life with (out) tad

love letter(s)

2012-02-11T10:34:00.000-08:00

Dear Tad

I miss you. No. Somehow that's not strong enough.

I MISS YOU!!

Of course I don't miss our fights, your stubbornness (not mine of course), our disagreements on what to buy or not to buy, your determination that you couldn't live without a new truck. I miss the loving you. I miss the part of you that is perfect.

I miss the calmness I feel when you are around.

I miss loving myself the way I do when you are around.

Oh Tad - I wish I could love me as much as you loved me.

I am about to leave our house for a month and I am not sure it's the right thing to do.

I have been running around a lot lately - trying to numb the pain I feel from your absence. I know it's not the anti-dote. I've got pretty good evidence that in the long run it just makes things worse. Yet I persist.

In the desert there is no place to run. Picking myself up every morning, rolling up my sleeping bag and walking another 20 kilometers in silence will keep me from escaping. Or so I imagine.

I was going to take your ashes with me. But once I got them to slip into the backpack I realized I was just trying to take them as far away from here as possible. The same way I have put all our pictures in boxes stored deep underneath other boxes.

I don't really need to do that - it's just more escaping. So I left some yesterday on that beautiful beach north of town with the crazy crashing waves and the sheer cliffs. Of course the Pacific breeze blew them all back into my face.

I walked back through the hills my boots and jeans covered in minuscule bits of you my beloved and the cardboard box they burned you in. Tomorrow I will put the rest in our beautiful garden with the dahlias, the fuchsias and the cat poop.

I sent myself two Valentine's Day cards. I tried to trick my brain into forgetting Valentine's Day by being on a trans-Atlantic flight all day but a friend nudged me lovingly.

In them I wrote deep words of encouragement, I thanked me for being such a loving, courageous man walking around with a brilliantly shining broken heart.

Of course when the cards arrived and I read them at breakfast, your cat sitting on my lap, it was your voice; your voice coming back from the dead to thank me for all the ways I showed up for you, for us. Who knew I was still yearning for you to thank me?

Tad - cancer was easier than this. We had a goal, a battle. Mostly we had each other. This part of the battle is a lonely one - and I don't do lonely very well.

One silent step at a time.

With deep gurgling fountains of love,
Greg

PS Thank you for having been such an avid hiker - I found all the equipment I need for my trip tucked away in your shed.

dream number three

2012-02-09T09:52:00.000-08:00

I dreamt of Tad this morning.

I was walking up a grass-covered hill with a group of French-speaking friends. The place was a cross between the Marin Headlands (steep hill with a view on the other side) and the Plains of Abraham in Quebec City (wide expanses of grass with a few tourists here and there). Deep green hill on a majestic blue sky. When we got to the top of the hill (effortlessly!!) a small group of people were sitting around talking and enjoying the view of a huge suspension bridge in the distance and water below.

Suddenly Tad walks up from the other side and speaks to them - he is wearing his usual baggy shorts and a tank top t-shirt with a back pack over one shoulder. He has his beautiful pre-cancer body back: broad masculine stance, thick biceps, perfect baby-skin, massive thighs, dark shock of hair. The only difference is he now has a tatto on his right shoulder - a radiant, sun-like circle with beams coming out.
He looks up at me, makes eye contact and smiles. I feel that immense indescribable warm sensation I get from his gaze, our gaze -- a gaze only he and I can create, so different yet similar to every other gaze in the world.

Then his sweet cat woke me up to tell me it was time for me to fix her breakfast. I tried to go back to the dream but it was gone. Dream chasing at 6:30.

Now - later - I am trying not to cling to it, to replay it all day like a looped video but the temptation is great.

I am preparing my bags for a long hike in a place I don't know, with people I don't know, in conditions I don't know.
For two weeks.
In silence.

The only thing I do know is that the organizer is a man of principles, a man of love; a mentor who has been part of my life for two decades now; who spoke the eulogy in a small village church when my dear friend's cousin was viciously murdered.

At a time when I see clearly that I do not want to make a new life for myself, I do not want to move on to the "next phase" of my life because I do not want to say good bye to the last one -- I am choosing to do something frightening and mysterious. I am choosing to step deeper into the world of the invisible relinquishing a large dose of control (which is of course only my fantasized version of "control").

I see clearly that silence speaks volumes more than all the words and noise, that the invisible is far more sustaining of my essence than the visible, the mystery is immensely more wise than the predictable.

How long will it take me to really understand this? And when will I start living by it?

things that surprise

2012-02-03T15:53:00.000-08:00

It has been nearly five months since Tad died. Here are a few of the things that surprise me from where I stand today:

I'm surprised at how much I can enjoy life.

A few days ago I took the neighbor's dog for a long walk on a remote beach (said neighbor is by no means naive: she knows perfectly well that asking me to walk her dog twice a week is incredible therapy for my broken heart).

As we climbed over the beautiful sweeping green downs before hitting the beach I put Strauss's Last Four Songs on my player. Arly was beside herself with excitement. The smell of wild sage filled my nostrils. I peaked the first hill and got a glimpse of the rocky coast and the incredible expanse of blue the music swelled. I stopped and took it all in - weeping with some kind of joy/sorrow.

Words like peace, awe, joy come to mind to describe my inner state.

Now that I recount it I realize that at no point did I feel the cloying yearning to have Tad back here holding my hand or smiling over at me as we communicate silently about the incredible landscape around us.

This leads me to a second surprising notion:

I am surprised music and nature always come through

In this painful period where my crazy brain has been reminded against its will that we humans are temporary creatures I am amazed to see that some things are permanent.

Music, laughter, the smile of a child, time in nature, a hug, humble honesty…these are some of the things which never fail to deliver on their promise. These things always (okay almost always) manage to touch something deep inside me that is indeed permanent, that I feel goes beyond this fragile life.

I am surprised how I know which things Tad touched

As I go through my days I am aware which household objects were around when he was around. The bottle of ketchup he used to smother his fries is still there. The tube of toothpaste that's reaching the end was the one he bought for his last hospitalization. The ice cream in the freezer was the one I served him the day before he died. My brain is somehow keeping tally of which things in the house were here during his life and which ones are new since then.

As with every object I first feel the strong pull to keep whatever it is; to find a way to never throw it away somehow. I have now learned I can set things aside and give them time. After a few days I realize I don't need to keep certain object anymore - sometimes I realize I don't even like them.
Then I can let them go.

I am surprised I keep two houses

I am surprised by the fact that I still live part-time in Tad's house, still pay rent on a lease in his name, still pick up his mail and scrawl "DECEASED RETURN TO SENDER" on his bills. But more than that I am surprised at my capacity to give myself permission to keep this place. Well actually I haven't quite given myself full permission.

It makes no sense to me how this place fits into my "plan". I don't understand how it makes sense to live part time in one city and part time in another without being fabulously wealthy. Even though I paid an accountant who sat down to look at my financial situation and deemed it perfectly affordable - I still feel deep down that I'm not allowed this frivolous situation.

But here is what really surprises me: I am allowing myself to do something that doesn't make sense long-term but completely makes sense one day to the next. When I chat with my neighbors, play with my cat or walk on the beach -- all in Santa Cruz -- I can't find a reason in the world why I woudn't be there.

I am surprised people don't ask more questions

Having my beloved die in my arms feels like the biggest, most incredible event I have ever lived through. It surpasses all the major events of my life: exploring wildlife in South Africa, helping push through new legislation to protect patients, being published in fancy magazines, getting a masters in midlife.

Daily I tell people I am in mourning because my husband died of cancer a few months ago. It's the most prominent fact in my mind. I would be an impostor if I didn't say outloud what was filling up so much of my mind and body these days.

And yet I am surprised no one asks questions about it.

If the same thing happened to a close friend I would want to say: "How did it go?" "Was it peaceful or a struggle?" "What were his last words?" "Tell me what it's like because my spouse will die one day and I'd like to be prepared."

Then again - I have never asked this of any of my friends or acquaintances. (Though I did have long loving talks with my grandma in her sweet little house by the lake the year before she died - asking her to share her thoughts and feelings about it all).

I am surprised I have no attachment to Tad's ashes

The crematorium assured me that in exchange for his war-torn corpse which I reluctantly handed over to them - I would get a bag of ashes within 48 hours. It actually took them far longer than that causing me to sputter and blame for a good week. During that time I couldn't wait to get the ashes.

My beloved friend Carl took me to a houseware store to help me find a handsome urn while I awaited the return of what was left of Tad's beautiful body. So it is quite a surprise to me that I have no attachment to these ashes or the urn they sit in.

I keep them in a prominent place, with a few photos of him beside them, a sitting Buddha smiling peacefully, a candle and some incense which I light from time to time. But the truth is I feel no connection to them; they are nothing to me.

They are not Tad. They are not love. They are not a sweet touch on the hand and a murmur in my ear, "Could you bring me some more coffee please?"

I have decided to join some friends for a two week hike in the deserts of Southern Morocco. I will take Tad's ashes with me and leave them there. I will take the urn and break it into pieces to be used for potting in my garden.

I am surprised at how little compassion I have for myself

Yesterday I tried a new strategy during my morning meditation: I imagined a therapy session with myself. I sat down across from myself and lovingly asked: "So tell me: how can I help you?". Then I told my other self about losing my partner, about the pain, the loneliness. What I saw was that when I see myself with my therapist eyes I am amazed at all the good things I've done, all the positive healthy things I do daily to take care of myself. I am deeply moved by the other me's sorrow and the incredible enormity of what the other me has been through and is still here to tell.

Sadly during the day I find myself thinking I should be better at this, thinking I should be doing things differently, thinking I should have my sea-legs by now.

In the same way if I put myself in Tad's shoes, if I imagine for a moment that it is me with the cancer who has died I see how serene I am with that. I feel very fatalistic about the idea that I have lived a good life and that -if it were to come to this - I could say good-bye serenely.

But I can't accord the same serenity to Tad. I see his death as "premature" and "unfair". I see his absence as not part of the normal way things work and I resent it, lament it, blame someone for it.

I am surprised by the insidiousness of numbing behaviors and gratitude

A strange tragic phenomenon occurs with people who have severe depression. They actually attempt (or succeed) suicide when they start to get better. It seems that in the throes of mind-boggling depression they have very little strength to do anything but once they start medication and are on the upward slope they finally have the energy to do what they've been wanting to do for a long time: find a permanent end to their pain.

I am not suicidal. Far from it.

However I see that I am healing, I am getting stronger. And in so doing I see that I have the strength to do things I couldn't before.

For instance I am numbing more. I recently went out with friends and before I knew it I was drinking more alcohol than I ever would in normal times (a very moderate level compared to most people but a lot for me!).

I am purchasing more. I see that if I am not careful I could start spending in ways that are wasteful and unnecessary.

I am staying up more. I tried moving our bed into the office and putting the office in the bedroom. For various logistical reasons mostly having to do with a loud furnace it didn't work. So after repainting the death bed bedroom I put the bed back there. I now stay up late and watch silly drivel on television then find myself clicking it off at some single-digit hour.

In the same way I had my first fender-bender in the weeks soon after Tad died I got my first speeding ticket in my life this week. In all my years of mindlessly driving fast I had never been ticketed for it. Not so anymore.

And I am surprised at how quickly these various numbing strategies slipped into my life while I was looking the other way.

But an important good thing I see sneaking in as I gain strength is a deep undertow of gratitude.

Maybe in my new practice to be more compassionate with myself I should have started with this one.

I find myself wanting to buy cards, flowers and chocolates for the bevy of caregivers who spent time with Tad and me during the seventeen months of hell. I find myself wanting to stop at the various Oncology Units and give warmth and thanks to all the people who greeted us, hugged us, fed us and loved us day in and day out.

When I think about it I usually cry which could mean I'm not ready yet but I see the day is getting closer.

Ironically this week I crossed paths with Kelly one of the more proactive and loving nurse practitioners working with us locally. I glimpsed her across a busy avenue so I yelled her name and waved. She looked then turned and walked away. Later when I called to tell her it was me she apologized profusely. "I thought it was some straight guy making cat calls and hitting on me!" she said. I forget that women constantly get solicited in unsavory ways by men like me.

I am surprised how much I know what's good for me

I have spent a good chunk of my life not always knowing what is good for me.

Many times I have turned towards the mystery of what is behind door number two all the while seeing that door number one was wide open and behind it were an array of healthy things for me.

I am surprised that despite my sorrow and my fears that many times I do know how to turn to what is good for me.

I know when the clutter in the house is beginning to affect my serenity and I need to stop doing what I'm doing.

I usually know when it's time to pick up my phone and call another person, to let someone else's healthier brain help me pick over the details of the giant museum of memories that is my mind.

I know how to call my doctor when I feel sick, to stop and eat when I feel hungry, to let the tears come out when I feel sad/moved/overwhelmed.

I know I need to keep going to therapy each week.

I know I need to keep letting go of Tad's belongings that don't serve me.

I know I need to keep stepping into the mystery of nature.

I know I need to shut down my brain after a certain time by meditating, watching silly TV or changing the topic to something light and inconsequential.

This inventory may seem frivolous to some but to me this is huge. Self-care has not always come naturally to me. For years it never occurred to me that after a long hike in the rain or in wetlands I could actually take my socks off to dry therefore avoiding a cold.

I am surprised that my broken heart is actually an open invitation
to something bigger, something more alive
I know this sounds crazy.

When we walk around with a heart this tender, this fragile the first thing we want to do is bolt down a thick protective concrete shield to keep it from being hurt more.

We want to tell people "I'm fine". We want to wait til we're in the privacy of our own home to blubber til the drool comes out. We want to share few details with strangers because we don't want to burden but mostly because they're not intimate enough and our cave man brain thinks they might use it against us.

Fortunately my level of sorrow - and no doubt years of learning not to apologize for being gay - have made it such that I can't keep the cement cover on any longer.

When people ask me how I am I stop and identify - as well as I can - what's really happening for me. And it is difficult since it changes so quickly and comes so intensely these days.

What I'm seeing is that somehow this open vulnerability is leading me to something bigger. And I must admit I don't want it to go away - or at least not entirely.

I was planning on joining a group of friends on the beach of a small remote island in Southern Thailand. I've been there before and it's quite glorious in its simplicity and beauty. But at the last minute instead of booking that ticket I chose to join a group of 20 or so people who will hike in silence in Southern Morocco for two weeks.

I know this sounds masochistic. Let's call it the "road less traveled". I just have a hunch that - as scary as this is - it is the better place for me to deepen this living with an open heart.

I've already shared that I noticed that complete strangers offered me loving kindness during Tad's hospitalization in Seattle when I tearfully wandered the streets trying to find housing, public transportation vouchers, an open-hearted clergy and goodwill stores to buy clothing.

This experience is teaching that part of my brain which wants to have a Five Year Plan that I can just trust myself and other people each day.

Yesterday for the first time I got out on a sort of surfboard in the Pacific Ocean - a passion shared by a good half of the inhabitants of Santa Cruz it seems.

I am suddenly obsessed by the idea of getting back out in the water and doing it again. I feel like all of a sudden it makes sense to me why I see all those people walk, bike or drive with a surfboard over to the coast day in and day out, sitting for hours in the water waiting for the thrill of a good wave.

My next thought was: Now it all makes sense to me!! This is why I needed to stay in Santa Cruz.

finding the golden thread

2012-01-15T08:54:00.000-08:00

I don't know what the hell I am doing.

I keep waking up at night and this is what races through my mind.

I don't know what I'm doing.

The other day I broke one of Tad's rules and took the cat up to the City without putting her in the loathsome cage that makes her yowl non-stop. Surprisingly she rode calmly on the passenger's seat the entire trip.

Quite proud of my success, I went to pick her up for the ride home a few days later and she made it clear she was having none of it. I tried to remember Tad's instructions: "Get a towel - Show her you are the alpha." A chase scene ensued that finished with me on the neighbor's roof, several scratches on my arms and the silver ring Tad gave me for our commitment ceremony lost.

This final mishap literally brought me to my knees. In sobs I cried out to whoever could hear me: "I don't know what I"m doing. Tad tell me how to do this."

Whatever "this" is.

People tell me: It's a process; the "grief process"; like a manufacturing chain where bits are added station by station till a new product emerges.

People ask me, almost daily: So have you decided what you are going to do? Maybe they too see I don't know what the hell I'm doing…

I believe they ask me this because they want me to have some kind of structure in my life; they assume more structure will mean I'm feeling better, I've "moved on" - (another term I hear a lot). They do it because they care about me no doubt.

There's a more rare category of folks who ask me how I'm "holding up". I imagine this is a grammatical formula they use to recognize that this is not normal life but a struggle - an uphill rock of Sisyphus.

The fact is I don't know what people assume. I don't know what these phrases mean. I do know what my inner life feels like today.

1 - I know there is nothing to fix; nothing to troubleshoot. I can't just do something and this state will magically go away; it's here for a while. (Though god knows I keep trying to numb my brain for a brief moment through various compulsive time-wasters that get me nowhere.)

Hence I find myself pulling away from people who "know what's best for me", the bootstrap troubleshooters who have a clear idea about what I should do differently to feel better immediately.

2 - I know it's not yet time for me to start a practice working with people in therapy. In part because of the above: I need to be careful not to rush into some grand project simply to avoid remembering that my heart is tender.

3 - That's something else I know: my heart is tender. Let me repeat that: My heart is very tender.

I cry easily. Events of the day move me incredibly. Aggressive actions or words are unbearable. Majestic moments like a sunset or a field of wildflowers are ecstatic. Both bring me to tears. Simple gestures of kindness: a smile, eye contact from a cashier are like sitting in front of a hot fireplace.

I yearn for (and get) calm, loving exchanges with people. During these exchanges I describe what is happening inside, how I'm feeling, how I'm different from yesterday or not, what thoughts are niggling at me.

4 - I am completely spooked by medical environments. Going to the doctor brings up flashes of painful memories. Just hearing a story about a mammogram recently had my heart racing, my palms sweaty and I needed to get a drink of water. An encounter with a young insensitive doctor-in-training at a recent function had me outraged. She was immature and making light of her patients. I almost left the party because of my rage.

5 - I see the one thing I come back to -- in between hikes, talks, massages, therapy, time-wasting and tears -- is the "getting rid of". The golden thread that runs through all of it is the piles of stuff I feel the need to rummage through and slowly scale back trying as much as I can to give things away or take them to charity.

The last step feels impossible so I often recreate new piles then once in a while actually get the courage to take them away.

(When I read the above I find it curious I see the Golden Thread as the rummaging and throwing away. If I were a monk or a priest focused deeply on the invisible aspects of life I would no doubt see the rummaging as just a pretext and the real Thread as the journey my heart is on. In my material, non-monk world I give "stuff" top billing and only once in a while remember the slow subtle transformation of my heart.)

But I see that in cleaning out I am also creating a new house. In a way I'm nesting. My gestures are telling me what I'm doing with my life right now, my "mission" is preparing Tad's house for some future life for myself.

It surprised me to be back at my own house in San Francisco and doing the same thing: a chair I was saving because I thought it might look good in our future house, old motorcycle helmets from a previous relationship, clothes I haven't worn in years all ready to go to charity.

I'm actually finding great pleasure in transforming my two places into something more comfortable, something that meets the needs of my life as it is today.

At the same time it is a lonely process; all of it.

I yearn to have a loving family of origin or tight circle of friends who live nearby, who are calm and supportive, who drop in with meals and mostly sit silently while we go through things together. We laugh as we look at old photos and sometimes tell stories. When I cry they hug me then simply hand me a kleenex. They notice my lawn needs mowing and they stop by to cut it while I'm at the grocery store.

Alas Tad and I are both exiles - the ones that ran away to live our gay lives serenely. And our families are spread here and there busy with their own work-a-day schedules.

The other day I said to someone "I wish I lived in an African village where we help raise each others' children and carry our dead to the cemetery together". Except I want hot showers and good mattresses.

When I read back on all this I see I am wanting the world to do something counter-intuitive: I am wanting people to be close but not too close, to sit in my discomfort with me, to not try to fix things. This is generally not how the world works.

During the holidays I found myself relishing in holding a newborn baby in my arms. I looked into his eyes and felt so peaceful. I also felt Tad's loving gaze on us. I couldn't wait to hand the baby to him who I knew would be squirming in both excitement and trepidation. But there were no Tad arms reaching out to take him from me. All I had was his loving smile in my mind.

The moment was so simple and tender I began to weep in the midst of dozens of people reconnecting, socializing, eating and drinking. My mind was muddled: I both wanted people to see my tears, to bear witness to my sorrowful, tender heart but didn't want anyone to do anything about it.

One friend saw what was happening from across the room and stopped his conversation. He got up from table, crossed over and simply sat down next to me. Without saying a word he just leaned in and pressed his shoulder against mine. No words were exchanged but I felt his deep love and support.

In that moment that was all I needed - a simple loving acknowledgement of this difficult path I'm on, a lonely path, but one that is not out of sight from the rest of the world.

I am really surprised to see -- when I take the time to put words to all of this -- that I AM preparing a future. This lonely path is taking me somewhere. I'm quite sure of that.

Ironically the future is the one thing I am not uncomfortable about. Even if the present is rocky at times I feel deep down inside everything will be fine. This is the great lesson I received from chemotherapy, from leukemia, from fighting with insurers and doctors, from Tad's death and of course from Tad's and my love.

No matter how uncomfortable the present is I am going to be just fine.

learning to forget

2011-12-27T12:21:00.000-08:00

The most painful part of my story with Tad is the part where he dies. The part where he goes somewhere -or nowhere- and I don't. The part where he suddenly starts convulsing and struggling then stops. Dead. And all I can do is hold on for dear life, waiting for his pulse to stop and repeating to him how much I love him.

This may seem like an obvious fact - it's the culminating scene of nearly every Hollywood drama ever made - but it's important for me to note. That moment is so deeply and painfully engraved in my brain I find myself yearning to be free of its pull. And yet I also want to hold tight to it.

Separation has never been easy for me.

In love relationships when the other starts to pull away, I hunker down, I cling; start bargaining. Somehow I get to a point where I click into "need" instead of "want" as in "I can't live without this relationship." Animated in essence by the same drivel that filled the pop songs of my younger years, I forget that I am whole and capable when the other person pulls away, that I have a life and an identity of my own.

Needless to say this uncontrollable strategy of clinging usually serves to push the other person further away, bolstering my fear-driven pain.

In my friendships - and because of my bi-cultural status - I tend to have short-term but intense moments with loving friends around the world. Then we separate. I have incredibly fond memories of beautiful moments spent with lifelong friends in New York (John!), Paris (Matthieu!) , London (Fiona!), Dublin (Ross!), Bordeaux (Madina!), Bangkok (Geof!) which end with one of us getting on a train and leaving for an airport.

After those separations my mind does something funny: it tries to keep the relationship going despite the thousands of miles that separate us. I usually talk aloud to the absent-friend in my daily tasks. I make concerted efforts to maintain the connection with phone calls. This phase generally lasts a few days until my brain settles into reality and the fact that we are separated by an ocean becomes palpable.

Or maybe I just do it until the pain of their not responding with a presence, a voice, a smirk, a touch becomes too much for me. Maybe I stop talking to them simply because it hurts too much to continue the charade of magical thinking.

Pain. Pleasure. Pain. Pleasure.

This time it was not two weeks I spent with a friend but five and half years. This time it was not a friend but a lover, a life companion, a person who shared the mystery of ecstasy and the quotidian with me.

And this time instead of returning to my own place on the other side of the ocean - surrounded by my other language, my other circle of friends, very different sights, sounds and tastes - I stayed in Tad's world. I choose to stay there to this day despite my urges to bolt. I reach out and pet the cat he petted every day for eight years (who uncannily behaves a lot like he did). I go out in the garden and weed around the flowers he carefully planted. I sleep in the bed we shared for years, the one where he bled out on the sheets, where I changed his diapers, where he took his last breath - also the one where we made tender love, watched silly TV and read books til the wee hours side by side.

"Honey it's time to go to sleep - turn the light off.",
"But I'm reading" (actually asleep)
"No you're not - I just woke up and your book was on your chest. You were snoring.",
"No I"m reading.",
"Here let me just take the book and put it here on the table. Can I please turn the light off so we can sleep?",
"No, leave it -I'm reading."

I can't call or send emails. I can listen to old voice mails or look at photos but I choose not to - at the moment that hurts too much.

I have found myself looking for notes from him to me - as I rummage through the privacy of his office. I pick up pieces of paper and hope maybe there will be a love note to me, a reminder of his devotion to us. I read all of his diaries hoping I will find declarations of love and pining. But I don't. Alas he mostly used his diaries to write about difficulties he was having, including with me.

A few days ago I found a new diary, just a few pages jotted down on a notebook he'd bought in Paris - narrating parts of our long journey. There on the second page after a long description of the frenetic big city and his overwhelm he wrote: "...but thank God I have my beloved guide, lover, friend Greg."

Thank God.
Guide.
Lover.
Friend.

The truth is we both expected his death and yet we were sideswiped by it so there never was a formal moment of saying good-bye in that tidy way we therapists like to do it.

He was actually quite busy the last few weeks of his life. He worked diligently at finding, printing and piecing into collages photos of the important people in his world. First he glued his family back into the same configuration they were in before the Big Dispersion in 1977 when his mother died.

He pieced together photos of friends from all periods of his life: Arizona, the Navy and San Diego, the SPCA and Santa Cruz. Two days before he died he made a long list of all the people he wanted to invite to a party - this included people who had never met before, who lived in Europe, the midwest, Arizona, California. People who in all reality would never gather in the same room because of time, financial and social constraints. He grouped them all - he brought them all together before he died.

I can only imagine what a glorious gathering that might have been and what a painful separation would have ensued. I would have been talking to invisible people for days.

Mostly I keep communicating with Tad by talking to him in my head. Sometimes I cry and ask him to hold me in his arms (If I use my imagination can almost feel them around me, warm and strong). Most of the time I ask him for advice - admit to him that I don't really know how to do this grief thing very well.

(Today at the gym with my little brother in Iowa I quickly moved to a private corner, behind a small separation wall and curled up to sob to the thump-thump-thump music pounding in my head. But I didn't communicate with him. I didn't ask him to hold me. I just wept then - a few minutes later - went back to my workout.)

Pretty much all psychologists agree this is me simply projecting the voice of Tad I remember. This is me using memory and imagination to recreate something that is no longer there. Yet why does it feel so much bigger than that?

If I stop and listen, if I close my eyes and breathe, I ask him to just talk. His answers are usually quite prompt, almost immediate. They are incredibly loving and kind. Our conversations go something like this.

"Honey I miss you." (I usually start crying at this point) "It's so hard to not have you here anymore"
"I know baby, everything is going to be okay. I'm right here."
"But I don't know what to do sometimes. This is so painful"
"You're doing everything you need to do. Give yourself a break. You know that everything is going to work out fine - don't you?"
"Yes but I forget - I get scared. Then I miss you."
"I know. I feel it. I can feel everything."
"And I'm pissed off at you. You left left me all this stuff. Every time I pick something up it weights a thousand pounds and I don't know what to do with it."
"That was just me being human. I was scared so I accumulated stuff. Get rid of it. It's nothing. Just be happy. Soon you'll be dead too."
"How can I be happy without you here?" - I know as I say/think this that it is in fact not real, that deep down I know it is just my fear talking - "It's so hard without you."
"Well if you just sit still - you can see that you are not without me.You're not without anyone."

Leukemia and death made Tad so wise.

Just sit still he says: Not so easy - my brain is particularly bad at sitting still.

Lately it has been busy reconfigurng Tad's house so that - whether I have it for one month or one decade - it meets my needs and looks less like the place he died. My brain runs with a million different geometries some of which I actually physically attempt in the place. Move that sofa there, this table here. I've moved the bedroom into the office and the office into the bedroom. I have begun imagining ways in which I can mix and match furniture from my place in San Francisco with furniture from his house adding another layer to keep my brain running more laps.

Now single - my brain begins to weave incredible 100 mph scenarios each time a man begins a kind conversation with me. These scenarios almost always include a version where we become a new couple. The fact that I'm in love with another man and really not available does not enter into the brain's equation. The sweet guy at the coffee shop, the man who chat with me at the dog beach - I find myself wondering if it's the start of a new life, a new Greg. My brain completely disregards my gaydar telling me these men are straight.

In short my brain loves to imagine new possibilities - no doubt driven by that painful but unrealistic part of my soul that aches to go back to the way things once were.

Oddly I actually see my brain doing this. I see it running circles around me - like the ten year old boy with ADHD I once worked with who would literally run back and forth across the school courtyard three times between the moment I picked him up in class and the moment we arrived at my office.

But when I stop and take a breath and pronounce the words, "Tad I miss you" when I sit still as he tells me to do, then I understand. The sobs come bubbling up and I remember what I don't want to remember. I remember that I have stopped looking at pictures of his last few months on earth, replacing them with photos of earlier, happier, pre-cancer times. I remember that I am consciously pushing away the flashbacks of his last hour - a hauntingly irresistible tape I play on a loop like the plane flying into tower number two over and over and over again.

Ironically I realize part of feeling less pain, part of getting through this process is to remember less. My capacity to no longer remember the more painful parts somehow helps me move forward.

One of the most ground-breaking experiments in twentieth century psychology developed into a theory called "attachment". The experiment was very simple: a young child and mother are placed in a room for twenty minutes, the mother sitting in a chair, the child playing on the floor. At one point the mother is joined by a stranger. Then after a few more minutes the mother gets up and leaves and the unknown woman remains. Finally a few minutes later the woman gets up and leaves to be replaced by the mother.

The observations that psychologist Mary Ainsworth made in the 1960's from this study have had massive implications on how we see relationships. And as we learn more and more about the brain her discoveries are becoming even more essential.

In short the team of scientists were able to determine several types of reactions in the children - ranging from secure to anxious. These generally reflected the inner state of the mother which would get transferred to the absorbant child.

The ideal outcome for a healthy life is what's known as a "secure" attachment. If the attachment is "secure" - that is it feels safe, predictable, consistent, empathic, connected - the immature parts of the child's brain can actually learn to use the more mature parts of the parent's brain. The more solid person can help the other party learn to modulate their reactions and soothe themselves in times of fear or sorrow.

Long term this kind of positive deep connection can lead to what John Bowlby, the main theorist of attachment theory, called a "secure base" in the world - the recipient of the goodness begins to feel safer in general, more confident, better skilled at going out to confront uncertainty while knowing or remembering there is a safe place to retreat to. This generally results in that person choosing to surround him or herself with more secure, healthy people as well.

I see today that Tad's voice inside my head is that calm secure base. His is the solid "voice of god" the church taught me to listen for as a I child which always seemed to escape me; the voice of loving god.

It is extraordinary to me that a groundbreaking piece of psychology which continues to affect how we think about human behavior is simply a story about the joy of love and pain of separation. But the outcome is clear. If we love someone deeply and consistently, the beloved party is able to hold that love, to remember it, even after our disappearance.

It does not escape me that the most powerful, nurturing activity I engage in weekly is to sit with dying people in a hospice; to proffer them love. I also remind myself regularly of the uncanny fact that I began doing this volunteer work the very day Tad was diagnosed with the leukemia that was to kill him.

I see now that my biggest obstacle to remembering love, to holding onto the secure attachment is actually the material world. I see how difficult it is for my brain to remain strongly connected to the ephemera of love, serenity, and trusting life when the world surrounds me with solid, material things that seem so much more important. Bills, career, politics, injuries, hunger, war - these all seem to pull me away from remembering love.

Sometimes the most soothing thing I can do is to sit down and make a list. It's a very simple list and it starts with "This is who I am." Then I write.
My name is Gregory Rowe
I am 50 years old.
I love a dead man named Tad Crandall.
I am a psychotherapist.
I am bilingual.
I live in Santa Cruz and San Francisco, CA.

The list is always the same. The important part, the part that keeps me solid is the making of the list. The act of taking my brain out of the news headlines and thoughts of bills, out of the pain of Tad's absence and fearful thoughts of the future and simply remember:
This is who I am.

subsiding pain

2011-12-05T09:18:00.000-08:00

Something shifted for me during my trip to France; something profound and healing. As my caring friend John said, "It's like the dove has returned with an olive branch."

It took me a moment to remember the full Noah story since I was focused on the more popular symbol of peace and end of war: After a long time in the dark hull of the ark, being tossed around on waves, Noah sent out a dove that returned with a bough from an olive tree. He and his family knew that land had been found, that they were within bird's flight of a new life.

I spent my last day in France in Paris, an afternoon and evening with good friends from San Francisco, Dublin, and Bordeaux. It was nothing extraordinary: we gathered first in the apartment for drinks and chatter around a wood fire in the marble fireplace (no other source of heat in the chilly flat!) then went out for dinner in a nearby cozy Moroccan restaurant we had spotted that day.

While eating my yummy tagine of lamb and dried fruit, while bantering back and forth about silly things and our life stories a door opened. I just got a glimpse of life on the other side but it definitely opened. I didn't see where I might be living, with whom or how. But I saw a feeling, an atmosphere. It basically said "You've had a full life. The world is huge and full of possibilities. You can be whomever you want to be. " And scribbled in between those lines was a bigger message: "There is hope for you."

This is curious to me since I feel as if I have never been without hope. I have known ever since Tad's diagnosis that without him I will be okay. I will have a full life, a career one day, friends. Maybe I'll even find someone who will want to have a child with me, the child Tad and I couldn't have but wanted so dearly. But abstract phenomena like hope -- along with other messy stuff like love, awareness and anxiety -- seem to come and go in multiple layers, "like peeling an onion" as a friend says.

I see now that I probably could not have opened the door that last night in Paris if I had not had the first nearly three weeks in the southern town of Bordeaux where I mostly continued the same pace I had had in Santa Cruz.

I stayed predominantly anchored to my friend Madina's stone house in a residential neighborhood breaking my home-boundedness with short jaunts to the market, to the school to pick up Ella her daughter, to the hardware store. For some reason I found incredible comfort in fixing little things around my dear friend's house - a form of caregiving I suppose.

Breakfasts with fresh bread, salty butter and homemade jam, long hot baths with eucalyptus oil, bicycle rides around the bumpy cobbled streets, short trips to the station to pick up friends, tea with Madina's parents in the big house in St Emilion: this was the busy schedule of my stay in the Southwest.

When I look back I see that as the days went by my tears became less and less abundant.

During the flight over I cried probably a dozen times (I've learned to do it now in a way that looks almost as if I've just gone into a short meditation by placing my hand on my forehead just so). I so wanted Tad to be on this trip with me. I wanted it to be as beautiful as my last trip to France, the one where I introduced him to my circles there, where I showed him my old house, where we played dodge ball in the pool with my godson and his brothers.

Each time I saw someone new I wept again; something about being held in their arms, about Tad not being there in our arms, something about the physical presence suddenly making concrete the invisible love that binds us.

Around day four or five Madina and I went down to the river on a full moon and said good-bye yet again to Tad as we tossed some of his ashes into the churning muddy Garonne River right in front of his favorite fountain. Like the night he fell in love with that fountain, there were people sitting around talking, drinking, singing, enjoying the last evenings before the arrival of the cold winter temperatures. Like that night with Tad Madina and I got back on our bikes and rode home through the old quarter past the illuminated Gothic churches and the medieval city gates - only this time in silence and with tears in our eyes.

One morning I sat on the sofa in the living room, crying softly, yearning for Tad to be there when little Ella came downstairs. That whole week for reasons no doctor could explain this lively six year old had been having stomach cramps, some strong enough to send her home from school. She looked up at me and said "Gregory pourquoi tu pleures?" I told her I was crying because I missed Tad. She asked me this with the same tone of voice used two years earlier when she would wake Tad and me each morning by climbing into bed with us and barrage us with "why" questions.

The most memorable morning we awoke with her riding Tad's torso like a pony and him half asleep mumbling to me: "Greg - what's she saying?" As her perky energy slowly pulled me out of my slumber I looked up at her smiling face and focused on the words coming out of her mouth: "She wants to know why you have such a fat stomach?" ("Tad! Tad! Pourquoi t'as un si gros ventre?"). Needless to say Tad awakened immediately, fighting back with tickles to regain his dignity.

That evening while her mother bathed Ella she shared that she had seen me crying on the sofa. It seems my tears helped her to burst wide open with her own sorrow and tell her mother how much she misses having daddy and her in the same house together. How even though it's been two years she doesn't want to live like this; she wants things to go back to the way they were; back to life before separation.

From the mouths of babes....

Looking back I see another moment that helped push back the sorrow quite unexpectedly was a phrase from Matthieu my host in Paris whom I have known since he was fourteen years old. Now a 43 year old gerontologist he has been around quite a few folks living their last days on earth. His simple idea ran counter to everything I had thought about death: "Sometimes it's just not a good idea for family members to be there when a person dies."

This seemed anathema to my old fighting spirit born from the untimely deaths of so many friends in the 1980's: being with someone dying was ALWAYS better than not. In my volunteer gig at the hospice it seems we all more or less secretly hope we will be present when one of our beloved residents stops breathing. ( The likelihood of being there that one second when everything changes is statistically quite low. There are after all 86,400 seconds in just one given day). Plus I had begun sitting with dying people as a form of service the very day Tad got diagnosed with leukemia. Surely that was some kind of sign? Or was that just a coincidence?

I asked Matthieu what he meant. He explained that even though we all imagine death to be beautiful and serene most people's aren't very pretty. They're messy and painful, especially so for those who love the person. "It's like birth," he said. "We have this idea it's always a great thing but it can actually be really messy and bloody and traumatic."

I am aware now how much those words helped. The last six months of Tad's life were a constant struggle. The last ten minutes watching him fight to breathe were excruciating for me - even though both of our two friends present described it as peaceful moment.

I see today that I have not just been carrying immense sorrow at having lost the person I feel closest to. I am also the bearer of a certain level of post-traumatic stress disorder, what used to be called "shell shock" when soldiers came home from war in a stunned, apathetic state. The flashbacks, the numbness, the tears were all part of the complex package I carried.

Funny...I used the past tense. I think this is indeed the part that lifted. I am aware of it because it's no longer there.

While at Matthieu's the temperature plummeted quite suddenly and I was in the market for a wool cap to cover my ears. I stepped into a local Monoprix only to discover they were selling a knock-off version of a jacket I had lost a good ten years previously. Since buying my first for a reasonable price I discovered the style had become quite trendy and the price had gone up astronomically. Hence after losing it I gave up on ever having one again. In fact when it disappeared my boyfriend at the time seemed to have been the last person wearing it. Although he apologized generously I still held a petty grudge.

I came home from the store without a wool cap but instead with a new quilted jacket, much like the one I had worn so many years ago. When I arrived at the flat I called out to Matthieu to come see my new purchase. I was actually having a playful, retail-therapy moment, my first since Tad's death. Matthieu walked into the living room and immediately said, "Looks great. Oh that reminds me I still have that old blue quilted jacket of yours. It's a bit worn out but I'll bring it back the next time we go to the house in the country."

Not only did it delight me to discover that all these years I had been wrong about the jacket's whereabouts, but it was comforting to know that it had always been in Matthieu's possession. The coat dated back a good twenty years - fourteen more than my time with Tad. Its near re-appearance was a gentle reminder of the continuity of things, the coherence of my world even when it's scattered across two continents and two decades.

Today I am back in Tad's house in Santa Cruz. It feels more and more like my house. I am laying down my arms, resting from the weary battle. I am not pulled into deep sorrow when I see our yard, our bed, our cat, our photos. Instead I find myself smiling more, singing aloud even. And in the smiles I feel Tad's love.

That night in the bathtub when Ella wept and finally blurted out her deep yearning to see her parents back together, her mother had the wisdom to lovingly tell her she and Ella's dad would not get back together. I imagine Madina knew such words would not be easy for little Ella's ears yet in the long run this was the healthy response, one steeped in reality.

I see how --driven by my old childhood desire to protect the ones I love from pain at all cost-- I fought very hard by Tad's side to help him survive leukemia. I also see how I somehow fantasized I could keep him from suffering if I just fought hard enough. By handily transforming my own neurotic ball-and-chain into a sword and shield I mistakenly believed I could relieve him of any pain. And if he did suffer then it was my fault for not working hard enough.

I also failed to notice that my "weapons" do not entirely protect me from harm either.

I hope one day my beloved -whoever that may be- will hold me in his arms while I breathe my last breath the way I proudly did with the beautiful and valiant Tad Crandall. And already I pray that the inevitable pain he will suffer from this last act of love does not last too long.

the power of imagination

2011-11-25T09:35:00.000-08:00

I reach my leg under the little formica table and say his name to nudge Tad awake. Outside in the drizzle is a stunning 17th century farmhouse on a hill surrounded by handsome Cypress pines. He wakes from his slumber, turns his head and looks up at me from under the rim of his red baseball cap with those big green eyes of his. (I told him not to wear baseball caps in France because he looks like a tourist). He's smirking because he knows I've woken him up to show him yet another pretty house. He often gets tired of my distractability and shows his need to pull away and recharge his batteries by nodding off. This time he reaches his hand across and touches mine, with just a smile, he rubs his ankle up against mine out of the view of the other passengers as a way to say, "Yes dear. I love you. Now let me sleep." Then he lies his head back down. A big smile comes to my face followed seconds later by a slow gentle cry that brings fat tears tumbling down my face which I cover with my hand so other passengers won't notice.

The reality is: Tad is not here; he is not on this trip with me. The reality is: Tad is dead. And the power of my imagination is both the incredible joy it brings me by creating pleasurable images and the terrible sorrow it unearths when it reminds me that it is -in and of itself- just a mental image setting off bodily sensations.

(If I use my imagination just right I can even feel the particular texture of Tad's hands.)

As I rush across the French countryside in a long metal train I find myself wondering if those seventeen months of cancer even existed. Maybe I just dreamt them too. The long nights in hospitals, waking every time the nurse walks in to check his vitals, the constant struggle to to see if I can understand what the doctors "really" mean behind their multiple masks. Did I just make up that fight, those phone calls, the hollering matches, the tearful nights holding each other?

Was this too just my imagination?

What's clear is that I did not dream the part of the story where the leukemia finally killed Tad. I did not dream the day he stopped breathing in my arms after suffocating on his own fluids. I did not dream the view of his cardboard box coffin sliding into the square chamber of the cremation furnace. That I know is not my imagination.

He is dead and I am not. Can someone please give me the instruction manual for loving a dead man? Because I don't know how to do this.

I find myself wondering when it will stop. When will I get back to wanting to be in love with a live person? I guess I am already there - I want to be in love with a live Tad. He's the one who is unavailable - so to speak.

If I were to give a name to this state it would be "bittersweet" - every memory is like a sweet dark chocolate that I get to relish in then suddenly I hit the bitter, hard center of reality and it becomes unpleasant.

*   *   *   *   *   *   *   *   *   *   *

This is not my first dance with death; far from it.

I saw my first cadaver at age 12 when I went to see my cousin lying in a casket; shot dead during a hunting accident. I saw my grandfather's corpse before I turned 18.

But the long, ongoing dance with death similar to Tad's was when I was in my early thirties and was told I had a medical condition that could be controlled temporarily but never healed. It would only get worse and for years smart doctors told me I needed to prepare for my imminent death.

Then some brilliant team of scientists came along and discovered a drug that saved my life. It's pretty clear to me that none of the men in white saw it coming given the seriousness with which they conveyed their concern that I prepare my family and friends for my death.

Now that I am back in France I see how being here helped me deal with the reality of death.

When I lived here in Bordeaux I was restoring a 17th century farm house. One of my pleasures as a cerebral break from the exhausting physical work was to come into the city and do research on the history of the house and the families who had lived there.

The notion that this place had been there hundreds of years before me and the thick stone walls would probably be there many years after me somehow made my loss and fear of loss much more bearable. The old house with its multiple owners whose names populated the "cadastre" at the local archives put me and my own life in perspective. History is just a long story about dead people.

I grew attached to that house and had romantic images of being buried in the park out near the tiny 18th century chapel.

During this visit my sweet friend John and I went back to that house - now a bed and breakfast slash winery. I walked from room to room noticing the floor slats I had replaced, the sink I had installed, the paint I had slathered on the walls. I walked around remembering names and faces of people who had come and gone in those rooms.

At one point John intimated that this visit might make me uncomfortable (it is indeed a rather enviable place to have lived).

But the truth is I didn't feel any painful urges tugging at my heart as I walked through this old rambling place. It was a big part of my life. I shared it with someone dear to me and now neither is a part of my life and I feel quite at peace with that. It's that simple.

I wonder what it will take for me to get to a phase in my life when I can say to myself "Tad Crandall you were a big part of my life but you are no longer and I feel at peace with that. It's that simple."

*   *   *   *   *   *   *   *   *   *   *

While here a young Frenchman appeared to flirt with me in a way that stirred something. He was sweet and sexy and seemed smart (one or the other alone would be insufficient to prick my ears). As we began to get to know one another I suddenly began to feel nauseous. Without notice I became aware I needed to get to a toilet quickly. I proceeded to vomit profusely.

If I am to believe many Hollywood movies this vomiting was caused by severe emotion but according to my GP I simply developed a stomach flu, what the French call "une gastro". Needless to say it brought an end to any flirting. I took the prescribed medication, went to bed (alone) and slept for a long time.

When I woke up this morning I found myself thinking: "Tad knew every one of my physical and psychological quirks. How will I ever be able to meet someone who will accept me for who I am? There's no possible way I'll ever be able to invite someone new into my life."

Then I began to say aloud to the stone walls words that surprised even me: "Tad I can't believe you left me alone? Why did you have to go and leave me here? I'm really pissed off at you for dying!"

I had never felt anger about Tad's death before and I immediately thought of Kubler-Ross and her silly stages and how I was actually having one of them; finally an experience that someone had documented as normal.

*   *   *   *   *   *   *   *   *   *   *

Driving back from the airport where I've just dropped off Madina it occurs to me that most of life is about memory.

My capacity to drive a manual car after ten years of driving an automatic, to find my way around the unmarked Bordeaux suburbs, to remember how to negotiate a round-about at high speeds during rush hour - these are all based on memory.

How is it that some memories are so painful and others so warm?

The Nobel-prize winning psychologist Daniel Kahneman says that one of the reasons it is hard for us to measure happiness is that we confuse our feelings about our life with our feelings about our memories of our life.

And what worse his work has shown how something that has the potential to be a really good memory turns into a bad one when it has a less-than-happy ending such as a peaceful vacation that finishes with a harsh dispute over the hotel bill.

If this is true then we might surmise that most relationships will become a painful memory - because they will end in unwanted separation. It's a wonder we allow ourselves to have children, to open up to other humans, to find a mate!

It would no doubt make my memories happier if I believed that Tad's departure from this earth was the immediate delivery of his soul into the arms of a loving god. It would allow me to walk around saying how happy I am for him; how lucky he is to be with god. But I can't. I simply don't know that to be true.

What I do know (or at least feel very strongly) is that this painful sorrow, this revisiting of memories, this conjuring of loving images, this talking aloud to a dead man is all part of our love story. It is all part and parcel of the beautiful encounter between Tad Crandall and Greg Rowe.

I can't have the beauty and love without the pain.

*   *   *   *   *   *   *   *   *   *   *

PS When I put the new SIM card in my French phone I was served up a series of beautiful text messages from Tad so excited to be sharing his arrival first in Florence, then Rome, and finally Venice where he compared the throngs of tourists to locusts. These were from 2009 where we split paths so I could go back to the US. With the magic of telecommunication competition, the new company kicked in and all the messages disappeared. I stood in the phone store smiling even though it stung. "The temporary nature of life," I thought.

recalculating

2011-11-01T10:12:00.000-07:00

The gut-wrenching, painful memories are slowly letting go of me, no doubt tired of gripping my brain for so long. I no longer lie down in my bed and immediately think of Tad's corpse that was there less than two months ago. I no longer wander the aisles of Trader Joe's my eyes wet with sorrow my heart yearning to prepare him dishes he enjoys.

I vaguely remember the seizures that took him to the floor, the spontaneous bleeding here and there, the moments of exhaustion when I would struggle to move his 195 pound body from the bed to the toilet on his office chair with five little wheels as support.

I've been called "resilient" by many of my friends. I find myself wondering if this is simply a well-developed capacity to forget pain.

More and more what I do remember - actually it's not a memory, it's a new original thought each time. So let me start again: More and more what I hear in my head is Tad's loving voice encouraging me.

This pisses me off somewhat.

I always swore I would not turn someone into a demi-god just because they're dead. Death does not make us perfect; Tad was by no means perfect.

And yet what remains in my head is Tad's perfection. The voice that appears when I stop and listen is that of Tad so full of love that every word he utters is supportive and kind; reminding me not to "sweat the small stuff", to dive in face first, to relish it all.

This voice also delights me beyond belief.

It seems I have always only had one voice inside me: a strident, rather demanding, easily distractable voice. Tad's departure has left me with a new voice. A loving voice. Not permanently - I have to lean into it to really hear it. But it's there.

I can think of other departure's in my life where people left a negative voice in my head. These departures were mostly painful ones: separations, divorce. Then there are the many departures which have left no voice in my head at all.

Couples specialist Jonathon Gottman tells us it takes five positive bits of feedback from our beloved to balance out the damage done by one single negative message. Imagine the power our loved ones hold over us!

So perhaps it's possible that in the face of an incredible 18-month long human tragedy during which I received thousands of loving messages from my beloved that somehow I have been able to replace the harping voice from my childhood with a caring voice for my adulthood.

It's possible when we walk someone to the edge of the precipice with complete love that the gift we get in return is a loving voice whispering in our ear. I find myself wondering what I can do to maintain it - to keep it whispering til my own body stops functioning.

What if Tad and I had had a fight the day before? Would this all look different today? Is it possible that his last words sealed the deal somehow? When he looked at our friend Carl and slurred through the fog of what was probably a brain hemmorhage: "I am okay to die, where is Greg?" was he setting our love in stone?

It's almost as if I can finally hear the "loving voice of God" promised to me time and again by the elders of my childhood church. Only now God sounds vaguely like Tad on a good day.

I maintain a family plan with the atrocious AT&T until I can find a way to record Tad's voice mails for eternity (funny choice of words, right?). But ironically when I listen to them they don't really deliver on my hopes of rekindling something with him. They're rather disappointing.

The ashes don't really work for me either. I just assumed when the crematorium gave them back to me that I'd feel some kind of satisfaction like people on TV. After all I did give them a body - you'd think I could fetishize what is left of that body. But I can't seem to relate to these ashes in any way despite my efforts to keep them in a central place on my altar.

It seems the only thing that evokes Tad in me is a photo. I find I prefer the ones of him hiking in nature. I tend to reach out, to caress the surface of the photo when I walk by as if I were caressing his cheek and I say aloud, "Tad, I love you." In that moment he is there.

But finding Tadness is a tricky thing. I have been giving away a lot of his belongings, to his family, to neighbors, to Goodwill. I keep wondering at one point will I go over the edge and suddenly his world will disappear forever. Why is that sofa an important part of maintaining Tadness but not that chair? How is it I can't find anyone who wears size nine and half shoes - is this Tad telling me not to get rid of his abundant collection of sports shoes?

This kind of superstitious thinking can take me to strange uncomfortable places. A few days ago I was so altered by my thoughts and emotions that I ran into the car in front of me at a stop light. Fortunately the other driver was extremely compassionate. I felt a strong need to explain to her the reasons I couldn't stop crying had little to do with the fender bender- yet the words wouldn't come out; just sobbing. "My", "husband", "just", "died", "of", "cancer" got slowly pieced together and she put her arm around me lovingly. The strident voice immediately corrected in my head reminding me it had been five weeks and I should be more 'together' than this.

Ironically we had pulled over to exchange numbers onto the parking lot of the clinic where Tad once got his blood drawn. She had actually slammed on the brakes to avoid an emerging ambulance. I remember those.

After Tad died I thought my "job" was to:
1 - keep his belongings that are meaningful to me
2 - get rid of his belongings that aren't and
3 - start a private practice either in San Francisco, Santa Cruz or both.

I see now that this is far more complicated than I had ever imagined. Any task I engage in is potentially overwhelming if it happens to bring up emotional material. Needless to say just about everything in the above list brings up deeply emotional material. Some things I trudge through nonetheless but most of the time I simply stop and do something else, something not on my list.

Turning off Tad's telephone line, sorting through his office, redecorating his living room, repainting parts of the bathroom have all taken weeks. I went to see a clairvoyant who told me to let go of my goals for now so instead I decided to go get coddled in Bordeaux by my sweet friend Madina. Suddenly buying a plane ticket to take a break from my emotions was too emotional. It took me three weeks to decide on a date, an airlines and an itinerary!

I've begun attending a "grief group" (on top of grief counseling and therapy). One of the facilitators shared with me her impression that people grieving are doing an incredible amount of work, even when they are not working. This notion resonated strongly with me even though it was not clear what this "work" is.

Last weekend I attended a men's gathering - a gathering held in the very place Tad and I met and where this summer we had a beautiful commitment ceremony. While there I understood what this "work" is. It became clear while listening to a friend tell a story about getting lost with a GPS.

Imagine you've decided to take a month-long trip across country. Let's say you're driving from New York to Los Angeles. You don't have an exact itinerary but you have a pretty clear idea where you'll be each day for the next thirty days. But then, when you get to Missouri you suddenly discover for reasons beyond your control that you can't go any further. No matter how convincing you are, no matter who you know, no matter how smart you are - you are stuck all alone in Missouri. This notion in and of itself is overwhelming. Your whole relationship to Missouri begins to transform. But the more time you spend there the more the two end points take on a different meaning as well. New York becomes this place of memories; the sacred land of life events both happy and sad. And LA becomes the unattainable land of unrealized dreams.

Then the space between the two changes in significance. That nap in the rest stop in Ohio suddenly takes on new value as does that sweet Bed and Breakfast in Amish country.

The entire time your GPS keeps muttering "Recalculating", "recalculating". The poor one-chip computer keeps trying to figure out what the hell happened. Its sole purpose is to get you to LA.

And that is the "work" I'm doing even when I'm not doing any work: Recalculating.

The bunk bed in room one of cabin two at Saratoga Springs Retreat Center is no longer just a bunk bed - it has become a sacred temple built solely to celebrate the first time Tad and I made love. A ticket to Bordeaux isn't just a visit to my family on that side of the world - it's a bittersweet pilgrimage to what Tad called his "favorite memory ever". The garden he carefully constructed over six years now full of historical significance merits national park status - worthy of millions of visitors.

As I do all this recalculating work I wonder how long I need to stay in Missouri. At what point am I doing damage to myself just sitting and reminiscing on my years with Tad? How long should I stand staring at a photo of him? Was the timing right for me to have that sweet tryst over the weekend or was it too soon? Do I really love living in Santa Cruz or is it just a way for me to keep Tad's home intact a bit longer? Am I rushing back into the real world or am I lingering too long in the world of the dead?

I don't have answers to any of these questions. Actually I do have answers in my head but they keep changing. They are the subject of a gentle disagreement between the strident voice and Tad's voice. "Stay", "Go", "Linger", "Work".

But there is one thing I am dead certain of (another great choice of words): connecting with loving people always feels right, even if they can't talk about Tad or the events of the last year. The handsome guy at my favorite coffee shop, the gentle hug with my sweet neighbor who just got a cancer diagnosis - the same woman who told me I could call her day or night if I needed help moving Tad, lunch al fresco with my dear friend Carl, a support group of broken hearted widows...At times I find myself wishing it were the 1950's again so people could drop by unexpectedly with tuna casseroles or to refresh the water in the living room bouquet.

These encounters are the crumbs showing me the path out of Missouri and on to the next voyage. Actually let me recalculate: they are the bountiful, nutritious picnics laid out beautifully in pastures along the winding road that might take me back to my next departure point.

My "job" today is to feast and wander. And if I stop and listen to Tad-God Voice while I'm there, it's saying to me: "YES! Keep loving! Keep crying! Keep laughing!"

PS Apologies to my loving cousins in Missouri - it's not personal!

the way, the truth, the life

2011-10-18T15:05:00.000-07:00

This post is a continuation of my last one, a deepening of it. It is about mysterious concepts I struggle with now that Tad is dead. Please feel free to share your thoughts and feelings about this either in the comments or by email to me.

I woke up yesterday with a pounding thought: "There's no way he said that!! Just no way at all." For some reason I was thinking about the phrase "I am the way, the truth and the life" attributed to Jesus of Nazareth. And all I could think was "He did NOT say that!"

I am no expert on Jesus - in fact I'm not even sure if he existed. But if he did, it seems to me that he rarely made himself the center of attention. If this story of Jesus that changed the face of the world is a true one - then something tells me it's far more likely Jesus said: "LOVE is the way, the truth and the life."

I once found myself chatting with a Mormon farmer in a remote rural town in Southeastern Arizona, the kind of guy I rarely have the chance to encounter. Being the good Atheist-but-Seeking that I am I asked him about his Mormon god.

"My god is sitting on the edge of his chair just waiting for the opportunity to jump up and encourage me; to tell me what a good job I've done and how proud he is of me."

I was struck by this cheerleader version of a deity no doubt because it is so incredibly far from the one I was introduced to as a child.

The Reverend Lee Vandenburg of the First Baptist Church basically gave us an unwritten list of behaviors. Let's call them the "In" behaviors and the "Out" behaviors. If a congregant did the In Behaviors she had a ticket into heaven --and by extension the church community-- but if he or she (openly) engaged in those behaviors on the Out list she wouldn't make it into either circle. This seems like a simple, easy-to-understand formula - and not far from the beliefs of most religions.

As my childhood world became more and more chaotic - financial problems, marital conflict, separation and finally divorce - my family kept showing behaviors on the "Out" list. When the divorce was pronounced we were told we were not welcome in the community. Quickly though it seems divorce was struck from the "Out" list and we were allowed back - or did it have something to do with my grandfather, a church elder?

As I approached adolescence it became more and more apparent to me (and no doubt to others) that I was more romantically interested in my male friends than my female cohort. As the painful truth grew slowly less opaque - despite all my attempts to pray those thoughts out of my brain - I knew what I had to do. For years Rev VandenBurg had told us that homosexuals were an "abomination". If ever there was a bigger, more terrible "Out" list hiding somewhere in the wooden desk in his office I was sure my shamefully secret wet dreams were on it - no doubt along with murderers and criminals of the type that hung on either side of the crucified savior.

I wish I could believe in Jesus.

I wish I could feel his loving arms around me telling me that Tad is in a good place. I wish I could believe that God had arms and like the Dutch paintings that gave Jesus blue eyes or the American paintings that gave him a more Anglo-Saxon mien I wish I could see God as some big loving daddy sitting on the edge of his chair.

But I can't.

I also wish I could bring myself to believe in some heavenly place. I wish I were really certain that Tad is now sitting on a cloud up there feeling some divine mojo flow through him.

Not being able to locate Tad has been the most painful part of my experience of loss. I want to know where he is. I want to know he is safe. I want to know he is well-cared for. I want to know.

To locate: "to designate the site or place of, to define the limits of."

My logical brain, the one that was taught geometry and learned to scan maps and endless library catalogs and GPS screens, wants to pursue its old habit of situating. It wants to place Tad somewhere on an X axis then a Y axis then walk away serene.

But it's not that easy.

A few months before my beautiful grandmother died she expressed some worry about what might happen to her after death.

"I know I'm getting closer. I keep having more and more dreams of your grandpa. But I'm just not sure about things...", she said concerned.

When I gently prodded she explained she was afraid for her soul's future since she had not attended church in quite a long time. When asked why she said her experience of the various church communities in town was that the leaders were all hypocrites: "They all say one thing and do another," she said.

As a leader in our small community she had seen many things in her ninety-some years - and she was not prone to idle gossip. She was clearly speaking from observed experience.

"It just didn't make sense to me. So I stopped going. I found peace and love on my own."

That day I wondered aloud with my grandma if her life as a loving spouse, a caring teacher, a community leader, a responsible parent was perhaps a godly way to go through life. Perhaps her way --even though it didn't include adhering to all the behaviors on the lists -- was closer to god somehow. I saw that she felt some relief after this.

With hindsight it's safe for me to conclude from my conversation with her that the "In" lists these men drew up --yes they were all men-- were in fact unattainable even to themselves.

Carl Jung is said to have written: "The great religions of the world are mistaken in that the ask us to put faith before experience."

How could I believe in divine love if I had not experienced it?

Given the narrow-mindedness of my spiritual teachers it wasn't possible for me growing up to experience the love of god. I mostly felt critical scrutiny from God's messengers. If indeed this church community was "the hands and face of God" their gestures communicated something other than godly love, something more akin to intolerance, judgment, small-mindedness. Like a pining lonely heart on a first date - God held a checklist behind his back just waiting for a faux-pas that would allow him to reject me.

I didn't wait to be banished from the garden - I simply excommunicated myself.

One day Rev Vandenburg's daughter contacted me here in California where she too had moved. She offered to get together and talk. Having lived far from my childhood community of faith I was eager to sit down with another adult and talk about it, try to make sense of it. I also had some real questions I wanted to ask about her father's at times illogical behavior.

When she met me for lunch in a small eatery in San Francisco's hip South of Market, Dot.com alley I was excited to see she'd come with her husband and young daughter. As a general rule I enjoy the company of children and, I assumed, a triangular conversation would be that much more lively.

But once we sat down to lunch I saw the whole meal play out in a far different manner than what I had expected.

First she told me from the very beginning - quite tersely - that her father had died, that he was a GOOD man and his theology wasn't open for discussion.

Then I realized her husband was not going to participate in the conversation. He sat nearby mostly interacting with their four year old - allowing Anne and I to catch up.

As the meal moved along however it became clear even Anne was only partially engaged. She remained guarded never really opening up to me about her joys, her doubts, struggles or desert wanderings. Here I was sharing my wonderings aloud and she played her cards close to her chest. As the end of my lunch break approached I began to feel eager to leave; I felt uncomfortable like an elevator at rush hour.

After paying the check I got up to leave when Anne said to me, "Greg I want to know where you stand on your commitment to Jesus Christ."

Sideswiped! Her question opened up a slew of ideas - many of which I'd have been happy to discuss. I was just coming back to the US after living 20 years in a country vehement about the separation of church and state. I had traveled to Muslim, Jewish and Buddhist places and had loving friends from all those faiths; friends with whom I could have open discussions about life, love, fear and faith. I had just lost most of my community to the devastation of AIDS.

I mumbled something logical enough to cover my Good Boy-ass but open-ended enough to show her that I had expanded my idea of Jesus-ness.

As I escaped our lifeless encounter I felt the rage emerge. How dare she! Was this lunch no more than a notch in her Envagelical belt? I wondered if the church community she and her husband led in Southern California was paying her for those hours. Maybe I should have let her pick up the tab after all.

Fortunately as Tad got sicker and sicker we never had this kind of dynamic - with other people or between ourselves. Though we rarely talked about God or life after death we became less defended and more loving. As we got closer and closer to his death we became more open to love.

Our urges to find fault with one another (or to retaliate in the face of fault-finding) disappeared completely most likely brought on by the sudden leukemic fork in the road, the heretofore forgotten awareness that we are mortal. This constant painful reminder coupled with dire ongoing physical pain was enough for us to drop our human urges to bite back when we felt hurt and instead practice daily gentle kindness with one another.

During this time we noticed that other people's gestures of love and support - a hug, a card, a check, a tear - would open our hearts even more, setting off bouts of unusual tears, an inexplicable mix of sadness and joy.

Immediately after Tad died I felt an incredible love emerge. When everyone left me alone with him/it I actually made a short video of his body commenting on the various parts and my relationship to them. When I take the time to watch it I sob deeply but I also notice that in the film I'm laughing with such incredible love - a similar feeling I experienced after making love with Tad. Was Freud right? Was an orgasm just a smaller version of the incredible intimacy of dying together?

So from this long trek across a hot desert of deep sensitivity, of profound love and of excruciating loss - a voyage I began with my beloved and finished alone here is what I think I might understand:

1 - When my heart opens up tenderly -- with doubt, with fear, with love, with sorrow -- I can keep it hidden. But I also have the opportunity to share it, to divulge my vulnerability to others.
2 - When I am open and vulnerable with others and they respond with love, somehow I grow bigger, I open up more (and I have a hunch they do too).
3 - If I am around someone in my openness and they choose not to be open, I feel lonely, like an object instead of a full human being.
4 - If I stay open with someone and they stay open with me until the very end - after their death their voice joins the chorus of loving voices in my head.

In the same way I can close my eyes, touch myself erotically and suddenly find the very real wonderful smiling face of Tad; in the same way I can feel his very presence while climaxing, yelling his name, spouting love declarations to him (these are followed by long deep sobs), I can also feel him lovingly supporting me. I can feel him sitting on the edge of his chair eager to encourage me and cover me in praise.

Tad's voice has merged with that of my loving ancestors: my grandma's, Melanie's, Stephen's. It has joined the voice of angels.

I can't locate this voice through searching and thinking. Instead it comes to me when I sit quite still and let it permeate me from within.

What remains a mystery to me is whether this voice is just a composite of memories I simply store in my brain or whether it is somehow something coming to me from beyond these three dimensions. Like my ancestors who saw their crop suddenly ruined and - in order to make sense out of something so unpredictable and non-sensical - blamed the heavens, am I just finding a mental shortcut by attributing this to something meta-physical?

The truth is I have had many odd, inexplicable experiences in this lifetime - mostly around dying people. But those are stories I never tell anyone. They are so unusual and impossible to comprehend - in particular by the social scientist part of me - that my brain tells me people will think I'm crazy or better yet the eery events never really happened; they were just a dream I had.

But they weren't.

finding home

2011-10-06T13:22:00.000-07:00

When I was 18 years old - on the verge of breaking out, running away, blossoming into a bigger me -- I saw a Kalamazoo, Michigan version of the Broadway musical Pippin.

It's the fictional story of the son of Emperor Charlemagne who seeks happiness in sex, war, politics, money and power. At one point he collapses and wakes up to find himself in the care of a simple, loving widow who lives with her young son on a farm. As he regains strength he takes to her day-to-day life of milking cows, repairing the roof, tilling the garden, and raising her son. But after a time he decides he needs to get back to a more pulsating, glamorous life and leaves her.

Toward the end of the play, the narrator offers Pippin the opportunity to disappear into a glorious ball of light to never return, the envy of all who see OR he can choose to return to one of the phases of his life. Pippin chooses to go back to the farm.

The narrator is furious. He calls out to all the theater workers to take away the music, the decor, even the costumes. In the end the man, woman and child are standing in their underpants on a bare stage beneath a dangling single light bulb while the narrator defies them to find happiness without the dazzle and decor of life.

For years I walked the bustling streets of Paris on my way to school or work, singing the titular character's theme song:
"Everything has its season; everything has its time...
Cats fit on the window sill, children fit in the snow,
Why is it I don't fit in anywhere I go?
Rivers belong where they can ramble,
eagles belong where they can fly.
I've got to be where my spirit can run free.
I've got to find my corner of the sky."

And for years I followed in Pippin's footsteps. I wrote for famous magazines that adorned coffee tables in France, the UK and the US. I interviewed leaders of opinion in the arts, politics, business. I was flown here and there in first class by organizations who were impressed by the magazine titles I wrote for and whom I assumed had no idea how very un-important I really was. When the AIDS epidemic started taking potshots at my friends I created a non-profit and brought unconventional programs into hospitals, sat with Ministers of Health from various countries to influence policy, offered support to dying people who suffered extraordinarily. Back in the US I surfed the dotcom wave and helped change legislation nationally to protect people with disabilities.

And then Tad Crandall asked me to step into his yard (but not too far).

He asked me to cuddle his cat, to help him weed his garden, to wander in the garden shop to find the next addition to his yard. To sit and watch TV. He asked me to slow down, to stop fighting. I railed against his world. I thought it was pedestrian and narrow-minded, stifling and claustrophobic. But he never once criticized mine. Not once. He just stood by the gate and held it open for me with a generous smile.

On the other hand Tad was adamant we mustn't live together right away. He knew that too much of one person in his personal sphere made him irritable and unpleasant. He insisted we spend time apart on a regular basis. This allowed me to keep a foot in my turn-of-the-century San Francisco cottage and another in his sweet Santa Cruz trailer.

Despite all my ambivalence, I woke up every day and chose Tad. As months and years went by I continued to choose Tad. I chose Tad because no matter what issues I had with his sleepy, predictable day-to-day pace I saw that what flowed between us was simple, humble love.
No one had ever offered it to me this purely.

A few days ago a lovely friend visited me from San Francisco and I didn't know how to be with her. It was "one of those days" which I've discovered come and go where I can't seem to stay focused on the living and my mind wanders off to the dead, to the past, to the pain of loss. Being in my body is cloying and I find myself saying and doing things thoughtlessly in order to make the pain stop.

We went for a delicious walk to visit Tad's and my vegetable plot where I suddenly became aware of how un-present I was. I apologized and suggested we ride back up to San Francisco together so she could beat the evening traffic and I could sleep in my own bed. I offered this not because I had anything there to do but simply because staying where I was felt so painful.

This was my second time in San Francisco since Tad's death and unlike the previous trip it was actually soothing for me to find myself in my own apartment, with my own furniture, my art, my books...all mirroring my story back to me. I met with friends and we caught up, had a good laugh and dinner in some trendy new hotspot surrounded by fashionable twenty-somethings.

I walked back to my place smiling, thinking Tad would completely support me if I moved back to San Francisco - which at that moment felt like home.

But during my short stay I got to see just how much my mind loves the stimulation of the City - in particular the possibilities hidden behind each thought:

As I walk to breakfast I see the tramway go by and my mind knows that it could take me to the international airport. The idea that I can easily access planes to take me to different parts of the world is stimulating. Getting to airports is complicated from Santa Cruz. For years I've always looked at big-ticket items in terms of how many plane tickets they are worth: a four thousand dollar used car = three and a half trips to Paris.

The waiter in my morning neighborhood restaurant is handsome and nicely built and slightly flirty. Not overtly so - just enough to transform our mundane interactions about eggs and bacon into something a little playful with just a hint of possibility - setting up what a friend of mine calls "mental rainchecks".

The same goes for the posters I see of museums, plays and films.

The truth is I almost never go to see them - except perhaps when friends are visiting from out of town. But the possibility I may go is immensely important to me somehow. Just outside my door something exciting is happening and if I want to -- and I don't really want to right now thank you very much but but just in case I might want to -- I could go outside and take it in.

I live in San Francisco the way most people live in Santa Cruz. I walk or bike to most places. I shop and dine within a few blocks of my house. I spend evenings in local eateries with friends or quietly at home watching a movie. On very rare occasions I hop on the trolley and adventure downtown.

The major difference between Pippin and me is that he chooses to go back to the woman and her son. He doesn't say, "I'll take the slow-paced farm but give the woman leukemia and let her die." Santa Cruz would be a lovely place to move with someone, well, someone like Tad. Without him it feels frightening, like the quiet cul-de-sac that it is.

The beauty of Buddhism is it reminds me to slow down my mind, to let in serenity. The beauty of Christianity is it encourages me to always follow the path of love, to eschew all the do's and don'ts and just come back to love.

The Christian legend suggests Jesus came back to life after his physical death. Though I don't believe this I do believe that people who loved him deeply saw him. They felt him.

Now that Tad is physically dead I yearn to locate him, to find where he is and make sure everything is alright.

If I stop and settle into deep Buddhist serenity Tad resurrects. He comes back to me with his healthy body and gorgeous smile. He glows with love, the same way I've seen holy men glow in some exotic monasteries. He is pure love. And all he does is encourage me and love me and assure me that love is all there is. No matter where I am.

home from war

2011-09-28T07:07:00.000-07:00

I'm told there's a Tarot card that shows a man in a field about to plant a crop. Legend has it he is a soldier just home from war. Victorious he has been given a bag of seeds to plant as his reward. With the shadow of death on his face, he searches alone for his field, the place he will settle and begin to cultivate his crop; the place he will make a living despite everything he knows about death and destruction.

Since Tad's memorial where people came together and shared loving stories of his life my brain races with thoughts. Most of them give voice to the broken heart of that soldier:

"How is it possible I am still alive?! How can it be that kind loving people were killed in this battle and that I am left here to take in the beauty of the world!? How dare the Gods! "

"What kind of victory is this? I am left here alone with a few belongings and my memories. This is my reward? There was far more reward in fighting battles even if we lost one or two. Even if there is no more reason to fight."

"How can I possibly sit still when I have seen such horrors? I want to scream out at the inequities, the inefficiencies, the incompetencies I've seen. I want to warn the world of what's happening around them. I've seen the inside of a powerful ugly machine and it needs transformation."

"Who am I now that I am not a soldier? How can I sit and do something as mundane as planting seeds after I've visited the depths of pain and the heights of hope? How can I possibly find solace in something as simple as a seed when just moments ago I was saving a fellow soldier? Why wouldn't I prefer to be fighting other fights or simply numbing my brain with drink and food and sex so the excruciating scenes lingering there have less of a sting?"

"How can I know what I need from a field? They all seem appealing and yet none of them does. This one is near a city with the distractions of bright lights, money and power plays. That one is far from the crowd with the painfully beautiful silence of soothing trees and waterfalls. There is another in a completely different kingdom where the people speak another language and fight for different causes. I could go there."

"But I don't want to plant seeds. I don't want to grow a crop to have an income. I don't want to think about the future. I want one thing: to return to the battle field and lie down next to my beloved friend. I want to hold his head in my hands and breathe life into his lungs. I want to feel his heart beat one more time beneath my hand. I want to see his eyes flutter so I may catch one more glimpse of their green depths. I want to hear his laughter bubble up from some unknown place reminding me that the pain, the loss and the devastation were all worth it."

"I want to lie down beside him in the mud with my eyes closed while the wind covers us with Autumn leaves. I will lie perfectly still and no one will ask anything of me. My body will rest, my heart will mend and the dark memories will lose their poison. I will sleep through the long nights of Winter til Spring arrives and the crocuses and jonquils gently nudge me awake."

hearing voices

2011-09-21T11:59:00.000-07:00

A few days ago I looked around at all of the belongings in this house, I felt the incredible attachment Tad had to this place, his center. How could I possibly walk away from a world that was so carefully constructed and with so much love? I felt overwhelmed.

Yesterday it occurred to me for the first time that I could indeed put Tad's belongings in storage, that I could move back into my San Francisco apartment and that one day, alone or with someone else, I might have a weekend house somewhere full of his belongings.

Now this morning I find myself wondering if I am being too cold. Am I just shutting down? Shielding myself from the pain of sorrow, from the yearning?

I once saw a mare give birth to a foal with some a physical deformity. Rather than moving in to lick the spindly animal and offer her nipple she covered it with hay then moved to the farthest side of the stable as if they had not just spent 11 months inhabiting the same body. The gesture felt so cold to me but the Farm Hand assured me this was commonplace if the life of the foal was hopeless.

Last weekend I insisted on being registered for a two-day meditation retreat high in the hill's above Tad's house. It's a Buddhist group I am loosely affiliated with and they lovingly agreed to have me join in at the last minute. I spent hours in silence, then just as many hours sharing open-heartedly and weeping with other folks. We ate tasty vegetarian meals and spent lots of time outdoors in the trees, a mixture of soaring redwoods and craggly live oaks.

When I returned to Tad's house on Sunday - despite my pain of separating from this delicious moment and my anxiety at being back in his house alone - I became aware that something had shifted.

I have entered a new level of acceptance.

Part of it has to do with recognizing that my anger at the nurse the morning of his death had little to do with the nurse and wanting him to be comfortable. It mostly had to do with the fact that - despite the months of preparing for Tad's death - I really did not want him to go. In those last minutes of Tad's life he and I were indeed at odds despite all of the words of reassurance I had given him over the months. Tad had been quite preoccupied by the idea that if he died I would somehow be disappointed. He had mentioned how much people talked about "keeping up the fight" and how hard it was to speak honestly about wanting to let go. Again and again I assured him I supported him either way.

And yet that morning when he said numerous times and in a variety of ways that the gig was up and he was ready to die, I in fact wasn't ready for it. I did not want to stop our painful but familiar fight. I did not want to be hurled into a world surrounded by his belongings but not him, a world where suddenly I need to decide what is best for me.

I began grief counseling yesterday. I met with a woman from hospice who purposely asked questions to evoke Tad, to talk about the history of our relationship. She said the goal of short-term grief counseling is for us to work on the four main "tasks" of grieving:
- Accept the reality of the loss
- Experience the pain of the grief
- Adjusting to an environment where the dead are missing
- Emotionally relocate the deceased and reinvest in life

The first three made sense to me and felt like part of the process but the final task suddenly had me bursting into tears. Where is Tad? How is Tad? Why is he not communicating with me? Why doesn't he let me know how he's doing?

I know this is magical thinking - in the same way that I saw the face of my dead cousin tragically killed on the first day of hunting season- in the crowded halls of my junior high when I was 12 years old.

The truth is that during the first night of the retreat - a night of tossing and turning, sleeping and waking as I slept away from our bed for the first time - I did have a dream of Tad. I believe it is another reason why I am feeling ready to step more into my world and leave his behind.

In this dream Tad had his beautiful masculine body back, his broad muscular shoulders and his torso shaped like an upside down Eiffel Tower. He was behind me, pushing me on one of those rug-like mats that we used as children to go down giant plastic slides at the fun-fairs. His hands on my shoulders, he was laughing as he pushed me quickly making me a bit uncomfortable. The funny thing is we were not about to go down a giant plastic slide; we were racing across the parking lot of the supermarket of my childhood: Bueche's Groceries in Flushing, Michigan home of my father's father's father's father.

At one point in his playfulness Tad made a sexual comment insisting he wanted to do something right then and there. I blushed and insisted he couldn't do it in public: "People are watching!!" I said. He simply laughed and kept pushing. He pushed me right out onto Main Street then took a right turn up the hill leading to the house where I spent the bulk of my childhood years. The dream ended there as someone's cough in the dormitory woke me yet again.

Tad's and my relationship was constructed a lot around my learning to trust him. In appearance I was better skilled than he was for navigating the real world. I had lived abroad, created organizations, been self employed, graduated from grad school, navigated social circles that are far-distant from those of my childhood. I helped him get his first passport then took him to my beloved Southwestern France

( I once tried to distract him from pain asking him about favorite shared memories. He actually shared with me that his was a long summer evening strolling through the streets of old Bordeaux where I used to live and work, having dinner outdoors with my best girlfriend and her daughter then wandering along the quais in the moonlight. As he retold the evening I waited for the "punch line" - ie the dramatic moment which I had possibly forgotten. But there was none. This gentle evening walking, chatting, eating outdoors in public spaces -- a pleasure I had indulged in hundreds of times before meeting him-- was indeed his favorite memory of our time together.)

Tad took me down a path of serenity. He took me into a garden maze of minimal words, of deep intuition, of strong ethical boundaries. He had a keen sense of right and wrong and often raised an eyebrow or simply said "I'm not sure that's a good idea". That was enough for me. I know that sounds over-arching and a bit unbearable. But he did it so sparingly and from a place of deep wisdom and love - that I couldn't help but stop in my tracks.

Yesterday I took flyers of Tad's memorial to the local hospital then to the oncology office where we would go every Monday, Wednesday and Friday to get a blood test and then blood products when necessary (the fact that he was kept alive by other people's blood donated out of kindness did not go unnoticed). The nurses and other staff greeted me with love, generously gave me hugs, offered heartfelt compliments and concern about the way we walked through cancer with grace.

The most powerful of these was one of the nurse practitioner's who had been an ally for a long time. She always knew how to hold a professional container but fill it with visible affection. She helped make our visits to the oncologists more meaningful.

She took the time in the middle of her busy morning to come and see me in the waiting room where she said to me (more or less): "What I loved about Tad was his powerful voice. The way he spoke up and said his truth. Even in his pain and weakness he would speak powerfully - at times overriding what other people said and he did it with so much love. I love him."

(As I write these words Tad's sweet cat keeps climbing onto my lap and the keyboard, pushing her way into my world - refusing to take no for an answer.)

I knew what she meant. I used to call this Tad's divine voice - this deep wisdom that he tapped into and spoke from, one that cut through all my muddledness.

If today I stopped to listen to Tad's wisdom, if I just stop and let him push me on the mat across the asphalt and up the hill, I believe he is saying:
Love your life Greg. Take risks. Love others. I believe he is telling me that all these belongings that he loved to accumulate were just things. Now that he belongs to the ethers he sees they were just another way to cling.

Today Tad's voice is telling me above all else to love life and live love.

snake or rope?

2011-09-16T13:35:00.000-07:00

As each day goes by I sob with less frequency. Yesterday I only sobbed three times. Actually they were more like gentle cries - none of the big moaning sounds that were present just a few days ago and often made me wonder if I was disturbing the neighbors.

I am getting beyond the sorrow of Tad's death and slowly entering into the murky painful waters of his absence.

The first phase was more like a mild version of PTSD. For days I had flashbacks of his last few minutes, of him being carted out. I replayed those last 90 minutes of panic, then anger, then calm. Yesterday at the dentist's office I saw someone gag on one of those plastic sucking things they use to hose out fluids and suddenly felt a jolt as I remembered Tad coughing in my arms. At the doctor's office (yesterday was my big self-care health day) I saw an elderly man in a wheelchair struggle to get to the lab and remembered getting Tad onto the plane bound for Seattle.

The second wave of emotions is more of a longing ache, a gentle yearning. I find myself asking him out loud: "Tad where did I put my keys?" or "Tad help me understand why the cat is making that funny noise. What does she want?" or just looking at a photo of him and thinking "God I love you!".

With the ache also comes an element of relief. On my way back to his house in Santa Cruz after a full day in San Francisco I stopped to buy some take-away food in Silicon Valley at a market I know from Tad's Stanford days. I took a taste of the chicken Tikka Masala and had to have some. I found a spicy mandarin chutney to go with it. As I walked to the car I was aware that had Tad been there he would have turned his nose up and I probably wouldn't have bought it.

Perhaps this was co-dependency on my part. Perhaps I should have just eaten what I wanted whenever I wanted while he was still on the planet. But the more I thought about it the more it felt like the healthy concessions we make in order to nurture loving relationship. For us, marriage (or in our case non-marriage) was about knowing when to stick to our guns and when to find middle ground or simply let go entirely.

In the middle of my doctor-dentist day in San Francisco I suddenly felt absolutely and utterly exhausted. I felt like I hadn't slept in weeks. My dentist who is used to bubbly Greg couldn't get a word out of me.

It seems that right now the gentle slow pace of small-town Santa Cruz is more appropriate for my emotional and physical state.

My biggest struggle however is to not let my sadness be drowned out by fears about the future (the oldest neurosis in human history I do believe!).

In essence Tad's house is a sweet rental that is owned by a cooperative. All of the neighbors are homeowners and Tad was their tenant (imagine 90 landlords!!). Among Tad's many accomplishments is he managed to domesticate me! Over the years I agreed to get a vegetable plot through the city, a ginormous flat screen TV for the tiny living room, a water fountain for the precious flower-filled yard. As our love for one another deepened - then complicated by disease, caregiving and fear of death -- I spent more and more time in domestic Santa Cruz and less time in urban San Francisco. I literally go out back, lean over a picket fence and chat in the evenings with Ana, the sweet neighbor behind us.

Now that all the framework is still here but he is not I find myself in a terrible conundrum that haunts my sleep: how can I walk away from this beautiful nest we created? how can I put this carefully-designed, color-coordinated, heartfully-cherished household into a twelve by twelve storage unit until I have a better place for it all?

In an ideal world I would love to have both places. I would love to continue sharing my time between the urban stimulation of San Francisco and the sweet seaside sleepiness of Santa Cruz.

When I share this with friends the reply is systematic: Now is not the time to make big decisions. But at $1000 per month (or $33 per day) I feel like time is running out. Or rather, money is running out.

Part of me tells myself that this is just a game my brain is engaging in to play tricks on me. I've seen friends lose a parent and suddenly all they can talk about is money - far more than what is necessary. I can tell accounting is the best coping skill they can summon.

So is this whole thing a story I tell myself? Is this just another way for me to combat fear? Fear of the void? Fear of letting go completely? Fear of my own death perhaps?

I once heard a prayer I believe attributed to Rumi that reads something like this: "God help me to see that the snake I fear is simply a coil of rope and the treasure I seek is the necklace already hanging around my neck."

I woke in the middle of last night in a moment of calm and had the following thought: "Who doesn't dream of dying in his own bed while his beloved holds him tight whispering love to him through every pore of his body?"

I know I do.

ashes to ashes

2011-09-14T12:10:00.000-07:00

The funeral director who wanted the big fat check up front never called me back on the designated day. It wasn't until I called him and said rather harshly to the receptionist "I feel a bit like I'm being jerked around," did they set an exact day and time for Tad's cremation.

The fact that his body is still here on earth and only a short walk from my house was haunting me. I kept fighting this urge to ask if I could come see him; an urge that was only conquered by the memories of other dead bodies I've seen here and there. They can look rather frightening after a few days. I was so afraid that I might see something horrible that I resisted my temptation to run over there.

His continued presence on earth was part of the reason I had a bit of what can only be called a "meltdown" while I was up in San Francisco for about one hour.

I was growing overwhelmed by the presence of all of Tad's belongings. The sempiternal homebody, he loved to keep his house full of nice things. This was at times a source of dissonance between the two of us: "I feel a bit claustrophobic in your house" was met with "Well your house is just as full!" This may be true but at least it's full of MY stuff.

I had a hunch driving to San Francisco on a major highway would be a bit too much for my sensitive system so I had my sweet friend Geof drive me up there. Once we arrived he helped me carry my bags into my apartment, asked if I was okay being alone and left.

I sat down at my computer and received a reminder email of a game night being conducted down in Santa Cruz - a room full of people who may or may not have known Tad. I looked around my place and realized that I didn't have that soothing calm feeling I usually do when I come home. This notion scared me: If I don't feel good at Tad's and I don't feel good in my own little cocoon where can I feel good.

I began to weep (of course) then I began to be afraid of this idea that no place felt comfortable and started hyperventilating. I knew I needed to find someone to drive me back down to Santa Cruz or take the train. But I couldn't seem to walk. All I could do was lie on the floor crying and rocking back and forth.

I tried to catch the subway to get a train but MUNI was running late, my sack weighed a million pounds, I was overwhelmed by the crowd (truth be told I was strongly put off by all the outer signs of fashion and wealth that I saw around me - it all felt incredibly frivolous and vapid).

Finally my friend Gregg agreed to drive me back down here.

I went to the evening festivities where we played a crazy game called "Werewolf" in which we take turns being villagers and werewolves eating someone (in the case of the werewolf) then murdering someone out of revenge (in the case of the villagers). I recognize it doesn't sound very soothing for someone who had just felt his husband shudder for the last time three days previously but in fact it was delightful to be concentrated entirely on something silly and inconsequential.

Coming home afterwards to sleep alone in Tad's house for the first time was difficult but once I stepped into his house -for the first time- I thought I could hear him inside of me, a voice I'd been waiting for since he died.

I don't know if this is something I completely project or if I actually believe that dead people communicate with me. I have had some uncanny experiences in life which at times I explain away by ascribing it to the powerful unconscious and other times I feel there are things happening on a level that I will never really comprehend. Lots of people have tried to convince me that one way is the true way - alas I am a doubting Thomas. I need to put my hand in the open wound in order to believe. And even then - even when very strange things occur in my world that have no logical explanation they tend to lose their credibility with me over time: Did that REALLY happen or did I just dream that?

When we arrived at the crematorium this morning for the final gesture I was sure it was the right thing to do yet hesitant to even get in the car. If no one shows up the funeral folks just do it themselves but they offered to let us attend without failing to mention "Normally we charge for this." Fortunately a few close friends had expressed interest in going and that gave me strength to do this last final gesture before the crematorium gives me a bag of ashes.

In short we went down a corridor to a rather stark industrial room with a wall of buttons and lights and two giant ovens, one with a long cardboard box in front of it on a mechanical platform. Scrawled on top of the box, 15 inches above Tad's once luscious mouth were the words: Name: Vern Crandall, Date of Death: 9-7-2011.

I was a little peeved. He really disliked his proper first name and had only ever been called Tad (or Thad in high school) as far as I could tell. Every time a nurse or doctor would pop their head in a hospital room and ask for "Vern" the two of us would wince slightly. In reality he got more and more used to being called Vern as he approached his death.

As the unskilled funeral director with the bad hair dye blathered on about crematoriums and temperatures, length of burn time and the cremation industry in general -- visibly filling the silence with anything that pops through his mind -- I found myself fighting the urge to reach over and take the lid off the cardboard box. To look at my beloved's face one last time. To perhaps open one eye lid and take in the beauty of his green irises. I wanted to straddle the whole box and grab him, hold him in my arms, pull him back into this world somehow. I wanted to insult the man who had been keeping his body hostage for the last five days instead of letting me continue to wash it with rose water and speak sweet things to it day in and day out. I resisted all of these urges.

With hindsight the last three hours we were together -when I did those very things- were the most precious, the most serene. It took some boldness on my part to listen to my gut and delay the arrival of the dispatch team; to stop the machine of phone calls and arrangements and just name my need: to spend some private time with my beloved's corpse. Once I did our time together was delicious. I got to slow down the clock and simply let him go at a pace that worked better for me. When the two young guys came to fetch him I felt ready. Well not exactly ready. I told myself that I could cling to this body forever and although it felt counter-intuitive I had to let him go with them in order to begin the process of letting go.

And that's what this morning was yet again: an uncomfortable, counter-intuitive thing to do. But the part of me that was reminded again and again that life is short told me I needed to go. The loving parent voice inside me that took me years to finally develop assured me that in ten years I will be so glad I helped push Tad's body into the flames.

Even in my hesitations I however underestimated how hard it would be. Were it not for my friends holding me on both sides I believe I would have fallen on the floor. Today's tears in front of the oven were accompanied by a wrenching of my body, uncontrollable movements of my legs, my hands gripping and tugging on my sports coat with no real objective - just raw sorrow.

When we were done we stepped outside to a sunny Santa Cruz morning. Across the sunlit valley I could see cars driving along the ridge that could only be the UC campus. In between were trees, the cemetery, the memorial gardens, even a glimpse of the massive Costco. I turned around so I could see the heat rising from the smokestack. I wanted to imagine somehow little particulates of Tad floating into the breathtaking San Lorenzo Valley in front of me, the valley where he lived for the last 18 years. I wanted to imagine his particulates feeding the giant redwoods on the slopes and the fish in the bubbling river where I had left my Widower tears just the day before.

My friend Richard had offered to take me back to the out-of-the-way canyon just a few minutes upstream from Tad's house. We had been there before but this time, the day before Tad's cremation, we decided to go deep into the forest, forging our own path til we got to a remote part of the river most tourists never reach. We climbed down carefully avoiding the poison oak and any slippery shale parts that might send us rolling to the boulders at the bottom. When we came out of the redwood forest we were in a sun-bathed part of the river with giant granite boulders and rapids all around. We put on our bathing suits and water-shoes, put our belongings in a waterproof pack and carefully floated and slid down the river in the icy cold, spring-fed water. It was glorious!!

At one point I stopped to lie on a warm river boulder with the sun on my skin and water gushing at an incredible force on both sides. I looked up at the redwoods and the sky. And I devoted it all to Tad. I asked him to come take a look, to enjoy through my body what his was no longer capable of enjoying.

A familiar voice spoke up in my head and told me that talking to the dead was silly but the loving teardrops falling into the river told me otherwise.

hearing the silence

2011-09-10T11:12:00.000-07:00

I don't hear Tad's voice calling out to me anymore. I don't hear him saying: "Greggy - could you bring me some juice?" (Besides my Grams he was the only other person who got away with calling me Greggy)

When I stop all I hear is silence.

Worst of all I can't lean over and touch his soft skin, caress his cheek, hear his snoring, see his near-constant smile, or catch a glimpse of his beautiful green eyes.

I actually could do this if I wanted to. His corpse is only a half-mile from here, waiting in some chilled room to be cremated. I find myself wanting to hop on my bicycle so I can hold him one last time, tell him it's going to be okay. I have to purposely remind myself that his corpse is no longer him - and that it no doubt doesn't look very pretty now that he's been dead a few days.

My hunch is that it will take me months to learn to be at peace without him, to stop yearning for him.

During our illness people regularly said to me: "He's lucky to have you." In a way this made me angry because - though I understand the intention - it felt one-sided. I would respond "Thank you - and I'm lucky to have him." or "We're lucky to have one another." Another phrase I found myself saying a lot to the droves of people who spent time caring for him was: "He's easy to love."

This wasn't always the case - Tad could be gruff and prickly but particularly in these last few years Tad was just so easy to love, so gentle, so simple, so warm. Waking up in the morning next to him I nearly always got a smile and a warm greeting of "Good morning. Did you sleep okay?", even in the midst of severe pain.

I write these words knowing that oftentimes dead people become perfect in the eyes of the living, their mortal status suddenly wipes away any character defects and they become demi-gods. But this really was one of Tad's qualities. I was far from the only one who saw it.

Since his death his friends and I have dealt with handling what to do with his corpse. The funeral company here in town that runs the two cemeteries and the crematorium are no different from the ones I've seen all over the world. They bring you in, wear a maudlin face, tip their head to the side, mutter "I'm sorry for your loss," then try to sell you more stuff.

Our friends' presence gave me the strength to cut to the chase rather quickly, in essence saying "I gave you the body of the man I love the most in the world - now give me back some ashes and tell me how much I owe you."

After squirming a bit the relationship became what it really is: mercantile. We got down to business, signed the multiple documents, wrote the check (for $1736 for the most minimal cremation!!), made small talk while things were being processed and left.

My friends felt bad that it had become so business-y but truth be told I preferred the sincerity of the commercial exchange to the false empathy of the usual funeral exchange. When my heart is broken wide open like this I don't suffer insincerity very well.

Friends have been spending the night with me.

I can't imagine being alone at night right now. I woke up at 4 AM the second night having an asthma attack. Suddenly I couldn't breathe and needed to get some air. Cat hair can cause me to get tight-chested but this felt like something else. I can't help but think it has more to do with the fact that less than 48 hours previously my own beloved man, the man I cherish so deeply, basically suffocated in my arms in that very bed.

As I sat on the sofa waiting for my breath to return I got on my computer and was immediately contacted by Tad's little sister from Texas wanting connection, wanting information.

Like with everything these days I was hit by a hurricane of feelings - at times contradictory. I wanted to be alone to breathe through the tightness in my chest but I wanted to exchange with someone who knew Tad intimately.

I want folks to know that Tad has given me instructions to organize memorials - one in Santa Cruz, one in Tucson) and to distribute some of his things (and I feel a strong sense of duty to keep my promise to Tad and his family) and at the same time I just want to stay in this little bubble and not change a thing, not do any organizing, not contact anyone. In general I want to give people the opportunity to connect with me as the living thing that remains of Tad and at the same time I need to not be overwhelmed by too many solicitations. It's a gentle balance I try to find.

Some moments it feels good to chat with Tad connections and some moments it feels good to be alone. And my needs change on a dime.

My most difficult struggle since Tad died has been this haunting sense that I could have changed the end - I could have done something to make his death more peaceful, less of a struggle.

Tad had made it clear to everyone that he wanted to be resuscitated. Our agreement was that the medical team would try to save him in times of crisis and I would pull the plug if he were brain dead after the intervention. This legally binding request pissed off a lot of doctors who knew that Tad's cancer was terminal.

I had grown so used to vehemently defending this position that I failed to see that on the morning of his death he revoked that agreement three times. Three times he made it clear that he was ready to go and that -de facto- I was no longer to ask for him to be saved.

But as I heard the fluids building up in his chest and he struggled to breathe more and more I found myself wanting to call 911 or to have the nurse and our friends do something. I even said aggressively, "We need to turn him upside down so the fluids can come out!!"

Gently, lovingly Ann just smiled and told me that it wouldn't do much good - instead she turned his head to the side to allow some of it to flow out.

Fortunately the sweet Sally came by yesterday and helped me to see that in fact Tad had put an end to our agreement. Three times that morning he told me quite clearly that he couldn't keep going, that he was too sick, that it was time to die. Among his first words upon awaking were "I don't have many days left on this earth."

By saying he was ready to go he released me from my promise to have him resuscitated at all cost. Alas neither he nor I knew that the struggle would be so difficult. It only lasted a few minutes but during those few minutes he kept trying to breathe and couldn't. He pushed hard. He struggled. And it was unbearable for me. On the other side of that struggle came serenity - I felt his heart slow down after going a million miles an hour. I felt him relax.

It is possible Tad pushed through that in order to die. It is possible he was indeed controlling things.

I think maybe it is easier for me to be angry with myself than it is to be submerged in sorrow that Tad and his beautiful, beautiful life are no longer here.

in these arms

2011-09-08T08:47:00.000-07:00

In all the years I have been on this earth I have seen more than my share of corpses. Even as a child I remember seeing dead bodies at funerals. I'm almost incredulous when my middle age friends tell me they're enduring their first loss.

But in all those years I have never been present when someone actually dies.

Not until yesterday.

A short time after I wrote the last blog I went back in to check on Tad. He had told me he wanted to stay in bed - a notion that frightened me a bit since we both knew it was a sign of his body slowing down. At my prodding he ate a full breakfast then took all his morning meds. Truth be told he and I agreed to slip him a few extra meds beyond the hospice agreement - some antibiotics just in case he got an infection.

He told me he was going to stay in the bedroom because he was feeling "icky". When I asked for more details he said he had new pains in his limbs -which didn't surprise me- but also he felt nauseous and had a headache. He said he didn't feel good. His words were more garbled than they had been an hour earlier. This frightened him. I grabbed a bowl for him to throw up but he didn't - he said he couldn't. He had been sweating more that night than previously so I found a washcloth and tried to soothe his agitation by bathing him gently and holding his hand.

He told me, "If I'm going to feel like this I can't keep going. I want this to end."

I looked him in the eye and named it more explicitly: "You mean you are ready to die?"

When he said yes I assured him he had all my support. For months now he has been concerned that he will let his family down by dying.

The new symptoms frightened me. The pains in the arms were edemas caused by broken blood vessels much like the new blood clot on his tongue. But the headaches and nausea only made me think of a burst vein in his brain. His speech began to get more slurred - and he told me so.

"Something's wrong. I can't do this." He was crying, flailing and asking for help.

I called the hospice nurse who came immediately and assessed the situation. She stood by lovingly and told me that this was just part of the process.

I felt my Mother Lion come up and wanted to scream at her: "Do something!! Make this stop!!" But I didn't. I lied down next to Tad.

Later our friend Carl who I had texted to come to the house quickly told me that - while I was conferring with the nurse in the living room Tad --despite all of the heaving, the nausea, the unbearable pain, the difficulty speaking-- looked at him and with gestures and words said: "I (pointing to his chest) am OK (making the OK gesture with his fingers) to die (moving his hand across his adam's apple). How is Greg?"

Within minutes of this he began to have what some call a deathbed "rattle" - that is his breathing changed completely and he began developing an enormous amount of fluid. I personally have seen people stay in that state of rattling breath for days, even weeks. To that end the nurse had called in to have a hospital bed delivered to the house. With Jorge - the in home worker - and Carl we were imagining different geometries in the living room so that we could fit it in there comfortably. we were wondering how we could get Tad who weighed 200 pounds from the bedroom to the living room via the narrow corridor.

Then his rattle changed to a gurgle. There was more fluid in his system than I had ever heard before. All I could think was "he's drowning! we have to do something". This was the most painful part for me - all we could do was turn his head and help the fluids flow out of his mouth on the side.

I am torn between anger at the fact that the nurse didn't intervene more to keep the fluid from backing up in his lungs and relief because he had said more than once that morning "I am ready to go."

There was a moment of peace - but to get to it he had to go through the turmoil of gasping for breath until no air could be found.

I lie there next to him, my right arm around his chest, my left behind his head, my face against his shoulder while Carl and Jorge sat holding his hand and arm - the nurse standing lovingly behind them. I felt his heart accelerate wildly, I watched his jugular pounding just below my chin. Then we all got very quiet. His heart slowed down. At some point - some unknowable point - his heart stopped.

It was absolutely uneventful. No angels played trumpets. No spirit lifted from his body and floated upwards. His heart was beating one minute then it wasn't. I looked up at everyone and said, "I'm not sure but I think he's gone"."

The nurse searched for a pulse and finding none acquiesced. Carl burst into tears.

I have no words for what I felt - I am still not sure what I feel. I imagine the emotions will become more and more identifiable as time goes by.

For the next four hours I spent a lot of time with Tad - Tad's body. I'm not sure which it was. I took off his boxers and bathed him with a warm towel and rose water. I caressed him. I talked to him. Jorge and Carl made lunch and we all sat around him and had lunch telling stories about Tad, the sun filling the whole room for the first time in what feels like years.

I kept coming back to his gentle lips, the hair on his chest, his beautiful warm hands that loved to find mine and hold it -- I couldn't stop touching his body even though I could feel the temperature dropping, the sweat drying up, the color changing.

Amazingly all of this happened with sweetness and serenity. I went out into the garden to be away from him then found I needed to be near him some more. I called his dad first then came back in to get one more glimpse of his beautiful green eyes before I shut the lids. His pupils were enormous. Every time I came close I could swear I saw his chest lift - to pull in air - a movement I had scrutinized over and over again so many times. At some point Astra had climbed up on the bed and fallen asleep between his legs.

When the agreed upon time came the cemetery folks took his body away through his gorgeous garden in the bright Santa Cruz sun. When I mentioned I didn't want to be separated from his body Carl reminded me that I had every right to keep it there for a few days if I wanted; that we could send them back and have them come another time. There was no law stating I had to have him sent to the mortuary right away. I was tempted but I knew that I had to let go. I was clinging to a corpse - to a physical sensation - I was clinging to a Tad who was no longer. The sooner his body was gone the sooner I could start connecting with the Tad inside me, the one that will live with me no doubt til the day I myself die.

My friends are here - surrounding me with love and support. This morning we will go to the mortuary and begin the plans for the cremation. Tad asked me to organize a memorial here in Santa Cruz and another in Tucson where he was born. It's my deep honor to take his remains there and to represent the Crandall - Rowe family among the much larger Westmoreland - Crandall clan of Tucson.

Today our bedroom where I just spent a sound night is full of pictures of Tad and me as well as flowers brought in by Carl. The ring I gave him for our commitment ceremony is solidly fixed on my left hand next to the one he gave me.

I have many big decisions to make in the near future but for now I can relax. I went out for dinner with two of his friends last night and felt so much serenity not having to wonder about whether he was safe or not, whether we are at the right hospital getting the right care, whether he will live or die. It was sweet to just be out in Santa Cruz with friends - to come back to a world where in appearance no one is sick.

exhausted

2011-09-07T09:12:00.000-07:00

Every Wednesday for the last 18 months I have gone to sit with dying people. Well almost every Wednesday.

It's hard to get people to understand just how full I feel when I leave there at the end of the day. In essence my gig consists in welcoming with unconditional love a person or a family that have been told they only have a short time to live. I do this as part of a volunteer team in a beautiful spacious Victorian house with a nurse directing us. It is gentle and sweet and life-affirming.

You would think I would be able to find a similar sense of calm and love at home with my dear, dear partner.

But I can't.

I still wake up one or two times in the night to lean over and hear if he is still breathing. Since he has sleep apnea there are plenty of times when he's not breathing and - in the absence of any air sound - my brain concludes that the inevitable has finally happened. It only lasts a few seconds of course, if that. In that flash of a moment I get a glimpse of what it might feel like to no longer have Tad alive.

Just a glimpse. That glimpse is a mixture of pain and relief and devastation.

This morning Tad awoke and in his morning stupor told me with a loving smile: "My days are short here on earth. I'm not going to be alive much longer." I asked him how he does it, how he manages with a smile and he replied: "One minute at a time."

He and I both see that his appetite is going down and his fatigue is going up. We both see that his circulatory system can no longer hold the blood inside. We see that his nose bleeds, bruises, swelling, night chills and sweats are all due to the fact that his blood doesn't have any of its normal properties.

Sadly this causes him incredible pain, pain that even massive amounts of narcotics can't seem to attenuate. This is disappointing to me as I've always lived with the fantasy that pain is the one thing medicine can control. In numerous trainings and all the hospitals I've worked in over the years that is the one myth that keeps giving: "we" have the means to give people pain-free ends of life.

Tad's mental state is already slightly altered by the heavy narcotics - though he has lots of moments of clarity. I imagine that if we gave him enough drugs to actually make him pain-free he would simply sleep all day. As it is, we already counter the somnolence with a mild stimulant each morning.

So how do I find serenity? How do I transform this painful, overwhelming, tragic situation (that will end with me walking away and him a cadaver) into one where I sit by peacefully just beaming him love?

How do I keep my strong hold on love and life knowing that one day soon his body will be here but his personality, his essence will not?

And why is this so difficult to accept? Isn't death one of the most common things on earth along with birth, sex and illness?

I understand why we humans spend lots of time forgetting the fact that this body is only temporary. To live with that reality front and center every moment is exhausting.

circles

2011-09-05T23:01:00.000-07:00

The last two days of hospice were deeply marked by the kind gestures of the caring circles of folks who surround us.

Carl came by and lovingly made meals while Tad and I chatted separately with folks. Richard picked me up and shared with me his secret path down to a gorge and an incredible series of river rapids and tide pools where we soak in the San Lorenzo. Paula offered us some amazing Mexican food with a yummy apple cobbler. Ana dropped a little basket of organic vegetables on the front porch. Ron set himself up in the garden trimming, weeding and pruning for a couple hours. Lyse called from Quebec and let me blow off steam - then promised she'd call back each morning just in case.

The hospice social worker sat down with me for a generous two hours helping me devise some kind of work schedule for paid and volunteer workers so that I can let go of many tasks and simply be with Tad. The process alone was a painful one since it meant embracing our painful near-death reality with fresh eyes. Not surprisingly it also had me looking at some of my oldest, most deeply-rooted neurotic habits and how they're coming up like daisies in springtime.

In essence Tad and I spend our time in one of four different modes:

1 - Doing - Making meals, eating, getting meds, running to the store, answering the phone. This mostly keeps me going since Tad has developed a new overwhelming pain in his left leg that keeps him from being able to move around without wincing and moaning. Though - Tad being Tad he still insists on walking from one end of the house to the other rather than use a wheelchair.

2 - Talking about the situation - This is close to the above topic. We spend time talking about visitors, what time to do things, about pain, poop, pee, more pain and pills. We discuss whether or not to call hospice for help, what TV show to watch, what to make for dinner. This also includes talking about things like the "Transfer on death" order for the DMV, the unpaid bills or what to do with something after Tad dies.

Both of the above tend to happen easily and without a lot of thought. We're aware that Tad is dying but the focus is mainly on the little things of living.

3 - Checking out - This is generally done through some kind of electronic means. TV and DVD are the easiest for Tad. Internet black holes seem to work better for me (How many times can you research something new on wikipedia in a day?). Films are a great way to plunge into other people's story of tragedy and loss, joy and victory over evil. They take us out of our own thoughts.

4 - Talking about the big picture - We generally really take the time to talk about the big picture, the deeper look at what is really happening to us in two different modes.

4A - Positive - We find ourselves lying side by side, holding hands or caressing an arm and remembering how lucky we are to be alive. We kiss and feel the incredible love that has brought us this far. We talk about some amazing moment that moved us to tears from the day before or a phone conversation from someone who just found it. Curiously in the Positive department I would also add the tearful discussions about the unfairness of the disease or the fact that we will be apart.

4B - Negative - Once in a while we find ourselves in a dark place of anger or resentment - Tad can't seem to make meaning out of what's happening to him and begins to ask "why". Not in a way that calls for an answer but more to the world, to the gods as in "why me?!" or rather "WHY ME GODDAMMIT!!!"

The role of physical pain: what I've noticed is that when Tad is in physical pain it is much more difficult for us to be in 4A. We're grateful for hospice for finally having the courage to give him the level of narcotics he actually needs - instead of the dose that makes the doctor comfortable. But sadly after having one the war against a shoulder pain that has been dogging him for months, he developed an incredible pain in his lower left leg and the pain meds don't seem to get it.

As of this morning he is starting on a new medication that functions on the "neural pain pathways" (though I'm not sure what the other pathways are....seems to me all pain is neural at some point in its pain lifespan). He was beginning to get some relief already this evening.

He really would like to be more mobile before he starts to really go downhill. We've been told by several people that he will most likely get more and more tired, lose his appetite and energy then slowly just fall asleep til he dies. He seems quite determined to not do that yet. He still has about 80% of his usual appetite. He still gets up to go to the bathroom on his own. But today, unlike yesterday, his pain was so severe as to keep him from walking in the garden - despite the very attractive heat that has finally wound its way to Santa Cruz.

And one last thing....he IS eager to have a little pro-funeral fiesta. Doing anything on Saturday Sept 10? You may want to be in Santa Cruz for a little celebration. Tad and I figured we should do it sooner than later so that he is sure to attend.

PS There is one other way in which we manage our time - a fifth mode. It is often brief but it has to do with the arrival of beloved members of our circles. As soon as someone shows up and offers love or to do something loving we both start to cry. The mostly unsolicited demonstrations of love and concern almost always take us to a place of deep vulnerability and gratitude. What else could make us go so quickly to precious tears??

waiting for death with love

2011-09-04T10:03:00.000-07:00

Yesterday we woke to the reality that we were now home, no longer fighting an elusive enemy and knowing that in some undetermined time -- maybe days maybe weeks according to the doctors -- Tad will die.

We found ourselves sitting on the sofa with our morning coffee wondering "So what do we do now?"

In my own no doubt romantic version of End of Life I grabbed pen and paper and started a list asking him what people, places and things he would like to see or do. Fly to Hawaii? Take a drive around San Francisco? Have friends come by one at a time to say good-bye?

True to his beautiful simple self the list was very short: eat seafood on the wharf, go for a drive along West Cliff (he later struck that from the list). Mostly it was about living our life normally at home, tending the garden, going for walks, watching movies, eating yummy meals together (last night's mac and cheese with big chunks of roasted chicken was a big hit!), seeing the occasional friends who drop by....

But then later in the day he found himself feeling aimless again: Should we finish that tiling project in the kitchen? repaint the bedroom? buy something on credit?

His desires come and go. But one thing is very clear: sleep is not a welcome activity. Tad struggled to fall asleep the last two nights and woke up bright and early, perky as ever.

His mobility has increased since we got home. He can now -with difficulty - move from room to room in the house and even take himself out for a walk in the garden.

I found myself experiencing a similar sense of aimlessness. Besides the small tasks of emptying the urinal, making meals, washing up, counting pills... I too am without a bigger project. I tell myself it's not exactly the moment to be starting some groundbreaking new plan.

One of the ways my crazy mind copes with this aimlessness is by wandering frequently into some imagined post-Tad future: what will I do with all this stuff? should I rent a storage space? how long will it take me to get through the sorrow? where should I live? should I open a practice here in Santa Cruz? Or just move back to San Francisco completely and put an end to my five and half year flirtation with this community? should I go relax in France for a few months? what about the cat? how will I ever be able to handle the day she dies? I noticed myself tossing these scenarios out to various friends in the hopes they would tell me what to do.

Fortunately I know it is not time to make any longer-term decisions. Instead I actually calm my rapid brain by closing my eyes and taking my imagination to hokey scenes of beaches and palm trees, to memories of paradise I've experienced in my fifty years. It's a short respite from my crazed brain but it helps momentarily.

At different points of the day Tad and I had the opportunity to visit the palette of emotions that come with living such an intense moment of life.

Most of the hours were filled with calm, with smiles, with loving gestures.

Other times we moved through fear when we stopped and talked about the bigger picture of what's really happening to us: what will death from leukemia look like? (mostly more and more sleep until he dies in his sleep we're told), can we "shorten" the process if it becomes unbearable?, does it make sense to stop all the medications just because hospice's budget doesn't cover them?, should we really drop the masks, the fresh flowers and the other possible threats of infection?, is my burgeoning cough a virus and will it cause Tad to die faster?

Then there are --mostly unpredictable-- moments of deep sorrow: for instance standing at Trader Joe's (yet again) with my beloved friend Julia and bursting into tears in the frozen food section while she gently hugged and rocked me. I had a hunch it would be a tough visit and thus asked her to hold my hand while I shopped.

Then later at home crying together when suddenly from nowhere one of us uttered tearfully: "I'm going to miss you so much."

Sometimes we feel sorrow mixed with resentment when one of us says out loud the thoughts of injustice we mostly manage to avoid: "Why? Why this? Why now? Why us?"

I must say the main source of strength for me is and often has been Tad's capacity to lovingly smile. He's always had a rather cantankerous side to him and when this illness first began I feared that side would dominate. He truly amazed me by sitting through hospitalization after hospitalization with an incredible elegance: polite words for each caregiver, a playful smile even in his pain, thoughtfulness and concern for the people attending his needs. I see today how much this smile carries me; how much it helps me get through.

During a sorrow moment yesterday he held me gently caressing my hair while I sobbed and asked whoever might hear me "How will I possibly find love so dear again?" He responded that the incredibly sweet love I get from him is simply him mirroring my love back to me. In his mind's eye somehow his love for me is nurtured by my love for him and vice-versa - like a juicy vicious circle, only not vicious.

(There's a famous couples psychologist who actually observed and quantified the amount of loving gestures a couple may exchange. He became very skilled at predicting divorce by observing when the ratio of "Love gestures" versus "contempt gestures" fell below 5:1. He observes that "masterful couples" generally maintain a ratio of 25 to 1.)

The deeper calmer part of me knows I will be fine when Tad is gone. I know that I will go through the sorrow, the rage, the letting go at my pace. I even know - from having seen many friends die tragically young - that Tad's love, his essence will be a continuous part of my inner world.

While bawling in his arms wondering aloud how I'd get by without him, he took my face in his warm hands, looked me deep in the eyes and with a big smile said, "Are you kidding me?! You have a whole world to help change!"

Perhaps we humans stay in loving couples because they help us aspire to be our highest selves. I for one am deeply grateful to have had five years and 100 days with the beautiful and loving Vern Raymond Thaddeus Crandall - who has taught me so much about love.

At the end of the day the hospice nurse came by to check on us. Tad asked her if there was someone at the hospice who could help us make plans for a memorial service. I've often imagined how after the cremation I would gather the many people who knew Tad and actually hear from them how his love changed their lives. Then it occurred to me - why wait til he is dead? "What if we do it before you die?" I asked. In his usual modesty he sort of hesitated but I could see he was also intrigued by the idea of being surrounded by love - by having his love mirrored back at him by dozens of folks.
We'll see if the seeds germinate.

In the meantime my deepest wish is that his love lives long in all of our hearts and minds, and particularly mine ;-)!

This morning's angelic/diabolical smile!

PS - If you've managed to get this far I encourage you to leave a little note of love on here. It always helps us to be reminded of how much love we have around us.

home

2011-09-03T04:14:00.000-07:00

We are home now.
I woke up yesterday thinking it would be the worst day in my life. It was six AM so I called a dear friend in Quebec and cried for nearly 90 minutes: How will I find the strength to get through this day?? How does anyone find the strength to pick up their spouse at a hospital so that he can come home and die??

Once business hours came around I called the hospice organization and made sure that I would have plenty of support to get through this - assuring them this is not a situation with an elderly parent and plenty of siblings to share all the tasks. I told them he would have to die in the hospital if he and I couldn't be well supported by them - that I would need lots of people here to help.

They sort of reassured me. But more than anything Tad reassured me. He wanted to be home no matter what.

I must admit that my biggest fear - deep below the surface - was the simple idea of having him here getting sicker not healthier. How do you live with that? How do you maintain serenity in the middle of that?

I always thought during these many months of uncertainty -- wondering which treatment is best, which hospital or oncologist or even whether to treat -- that the pain would be less intense once the uncertainty was lifted. I was yearning for the serenity that comes from knowing either: 1 - he's going to get better or 2 - he's going to die.

Well now I have that certainty and it is no more comfortable. I still find myself wondering...just about different things.

Once we finally got home, got all the paper work and medication issues taken care of - we were able to just settle into watching back-to-back episodes of "True Blood". We actually declined the offers of support folks to come over. One friend dropped in and offered help. I found myself asking him if he would be willing to make us dinner (a wonderful Mexican dish another friend dropped off) and leaving us alone. He lovingly executed and went outdoors while we had dinner then came back through to collect the dirty dishes and wishes us good night.

* * * * * * * * * * * * * * * * * * *

It is 4 AM. I am lying in bed where Tad was just a few minutes ago.

He woke up to use the commode next to the bed and asked to go spend some time on the couch in the living room. For some reason the recent hospitalization created more pain, this time in his legs - hence he walks painfully and with a limp. But he was determined to get to the couch and sit up for a while. Within minutes he was back to sleep.

The hospice team seems to have finally found a level of pain meds that work to keep his pain at bay - a minor miracle in my book. My guess is that he has always needed a level that most doctors consider "dangerous" so they never actually had him fully out of pain. Now that the danger is no longer a danger - they can give him what he needs. He's a bit more chipper than usual but nothing radically different from his normal smiling self.

Tomorrow is another day.

i don't know

2011-08-31T22:00:00.000-07:00

Tad woke up yesterday morning incredibly ill. He could not manage to keep his balance nor stop shaking.

We made it to our appointment at the oncologist's office thanks to a neighbor who helped me get him into the car but I quickly realized he needed to be in the Emergency Room at the hospital across the street.

For the next three hours I watched painfully as Tad got more and more pale, weaker then unconscious - as they pumped him with all kinds of fluids to help him come back to awareness and start to breathe normally again.

As this was going on around me I was being approached by a myirad of people telling me bits and pieces but mostly asking so many different questions that I shifted into a near-altered state: completely calm with a steady, deliberate voice. Among the interactions were someone giving me the contact information for the crematorium, someone asking if we preferred he be transferred back to Stanford since it's protocol to treat at the most recent hospital and someone talking to me about banking issues and death certificates.

My biggest torment though was caused by the incredible pressure of being squeezed between my promise to Tad to resuscitate him if he should go into cardiac arrest and the insistence from the doctors -- again and again -- that resuscitating him is not a good idea. Doctors rarely have an opportune time to discuss this (rushing into an ER, transferring to an ICU, etc) -and they also don't like it when the answer is not convenient to them. Tad's request is that I have him brought back to life in case of an accident and then, if his quality of life is completely zapped, I agree to have him unplugged. Doctors don't like to do this with patients who are fragile and who may not have long to live anyway.

One of them said to me snarkily: "Do you know what it's like to be intubated forcefully? Have you ever been intubated emergently?" Another simply said: "I'll do it but I'm sure I'll break a rib or cause him severe damage."

Tad did not have an accident and five hours after our arrival he awoke in the ICU, looked into my eyes and said, "Why are you so calm?"

The truth is I don't know.

I don't know how we find the strength to get through each day.

I don't know how we can possibly feel like we've never been happier and how incongruent that is with the fact that Tad is going to die.

I don't know how Tad has found the strength to stay alive and how he has "defied every bell curve" according to the doctors.

I don't know how we can get back to that sense of happiness when we suddenly feel overwhelmed by the sheer sorrow of the fact that soon I will be here and he won't, the fact that illness is mostly random and unfair and has struck ruthlessly in the deepest, most intimate part of our lives.

I don't know how much time Tad has left to live.

I don't know what happens to a person's essence after the body dies.

I don't know if I'll be able to keep Tad's love alive inside me in a year, five years or ten years.

I don't know.

Today he was moved to a General Medicine floor away from the starkness of ICU. Being in a small local hospital is such a welcome change after the giant teaching hospitals. When the RN walks in and calls me "Hun" then slips me an extra meal my heart skips a beat. I am assured that I was not crazy in my pain at Stanford because they were indeed keeping the sweetness of life out of nearly all medical interactions. That absence caused me so much pain during our month there.

We have begun talking to hospice doctors and looking at what kind of in- home care can be set up; how we can make Tad's life as long as possible and as comfortable as possible from the comfort of his beautiful little house and garden.

Last night my dearest friend John and his partner came down to spend the night and keep me company. They slept on the new, navy blue, sofa-bed I bought Tad for his birthday. Astra slept with me, keeping Tad's place warm for him.

Until he can come back home.

the secret to life

2011-08-28T14:57:00.000-07:00

I woke up very early Friday morning --two days ago-- thinking it would be the most painful day of my life.

Not only did I need to pack all of Tad's and my belongings, but I also needed to take my sweet, pain-riddled husband home to die. As I walked across the flawless Stanford lawns toward the hospital I found myself wondering where I would possibly find the energy to get myself through this tragic day.

But -- as my brain loves to forget -- life is rarely the way I think it will be.

The most difficult part of the day ended up being the waiting-game. Stanford took forever to do what they kept promising: finalize all of the discharge tasks. Planned for 2PM it actually happened at 7PM, a mere blink of an eye in Rigid-Institutional-Time but an eternity for someone with a death sentence eager to be home.

I discovered that the actual tasks of folding clothes, working with discharge staff, carrying food trays, fetching coffee were all quite soothing to me, pleasant even. However at one point I couldn't hold it anymore and my tears began to flow:

"I can't believe I am taking you home to die. This is too much for me. How did this happen?" I sat on the bed in a heap.

Tad looked at me with his gorgeous smile -- and a face of misunderstanding -- shaking his head and saying: "But that's not how I see it at all. I'm going home to live. Let's go live."

This waiting was nothing new. When the doctors first came by a few days earlier to deliver the bad news of the biopsy I was absent. Since the results were "complicated" they offered to come back at 1PM so I could be present. I was expecting the usual cancer-chemo, six-of-one, half-a-dozen of the other outcome but also knew it might not be good news. When I arrived at 1PM I notified the team and was told someone would be in shortly. That didn't happen. Each time I hit the call button the receptionist assured me that the oncologist was informed and would be there soon.

At 5:30 I went out to where I knew the doctors congregate and grabbed the first (no doubt unsuspecting) oncology team member, a tall, lanky Jewish-looking kid in his early 20's with expensive shoes beneath his white coat. I looked him in the furtive eyes and said: "I've been waiting four hours for the results of a life or death biopsy. I think it is highly unethical for you and your team to keep us waiting so long. Please do something about it now."

I must admit I was really grateful to see the Big Boss oncologist arrive five minutes later and equally grateful to hear his honesty -- something I had been seeking from big-shot doctors for months. I could see he and his lovely fellow were squirming as they told us that the leukemia was already active but the immune system just wasn't. They offered to treat again but told us it would probably be useless. The boss made some banal comments about living fully and enjoying the time left - only vaguely hiding his discomfort. When I told him I could see it wasn't easy for him he acquiesced and replied that he had this conversation "four or five times each week."

I asked him to describe to us what death from leukemia would look like. (It is in moments like these that I realize I am an optimist; I never really see disasters coming. Real frank black and white reality words -delivered with love- are what help me the most.) Much like my many friends who died of AIDS in the 80's and 90's he explained Tad may simply die of an infection that his leukemia-ridden body and the many anti-biotics can no longer overcome. Or because of the way the cancer weakens the circulatory system he may just have a brain hemorrhage and fall asleep - never to awaken. Unlike tumorous cancers however, the oncologist assured me, leukemia doesn't put pressure on your body in extremely painful ways.

He gave no indication of a time table.

Among our back-home tasks yesterday -including laying out pills, fixing the vacuum cleaner and unpacking-- was the simple gesture of filling the fridge with good stuff. I waited til dinner time when I know Trader Joe's is less busy and asked Tad what his wish-list was. He announced he was coming with me.

I suppose I shouldn't have been surprised. He had already jumped in his pick-up and gone to the hardware store for electrical tape to repair something. I began to get anxious when I saw that he wasn't coming back quickly enough. Images of the guys at the lumber company calling an ambulance to resuscitate him flashed through my mind. Then suddenly he came around the corner, the back of his red pick-up truck full of new plants and flowers he'd just bought at the adjacent garden center. Where he was getting the energy and feeling pain-free enough to do all this was a mystery to me. Just the day before he had been in a bed at Stanford Hospital buzzing again and again to get more pain relief.

At Trader Joe's we began filling up the cart with foods we rarely buy. It wasn't something we agreed on, everything just seemed appealing to us. Between UC being back in session and the surf season still active there were lots of young, half-dressed, cute things wandering around the store which, the usually mute Tad pointed out to me with relish. After I went through the frozen food section picking out our usual fare he insisted on going back to check. I went to the end of the aisle and watched him slowly walk along the giant freezer sinkholes carefully perusing each product with a smile. He came back with some kind of lemon/ginger-snap ice cream and fish sticks - things I would have never imagined buying for him.

Ironically Trader Joe's has played a key role in our couple. Just two blocks away from Tad's house - it's the little Ali-Baba cave I run to on a regular basis to make yummy meals for him - a devoutly non-culinary type. A big part of our love story has been me preparing meals and watching his pleasure as he eats them up. Compared to my life in France where this whole process took hours, these meals are usually short-lived and to the point - remnants of our Protestant heritage no doubt.

During the many months of hospitalization I began to realize how important these cooking and serving rituals had become for me. When he was gone I struggled to find pleasure in making meals. When he was here I found myself unearthing old techniques I had learned in cookery school back in Paris in my early 20's.

Suddenly while perusing the carbonated fruit-drink section my mind left the pleasure of the present moment and inched ahead to the future - the valley of the shadow of death. I burst into tears just as Tad came around the corner with yogurts and other goodies.

"Oh honey what's wrong?" he asked.

"I'm just thinking that sometime soon I'll be in this store shopping and you won't be here anymore."

He nodded silently, hugged me and wiped away my tears with deep love while two teenage girls walked by saying "Awwww..." with real empathy and a total absence of any teenage snarkiness.

Not to sound too dramatic - this moment was a mini-enlightenment.

There I was steeping in this blissful food-shopping adventure with the Man-I-Love who was finally free of hospital rules, gowns, gloves and vageuly sadistic RN's withholding pain medication. It was just a beautiful moment to be alive enjoying the purchases of each taste. Then suddenly I let my brain - clearly my best friend and my worst enemy - imagine something not real at that moment, something in the future. And I went from being completely content to being full of sorrow and fear. Then just as suddenly Tad flashed me his loving smile and I went back to joy. With his whole body he said, "I see you". Finally total strangers witnessed and acknowledged our suffering.

Those three minutes encapsulate some of the most powerful lessons of my life: the pain I cause myself by not living in the moment, the joy I feel even in the midst of huge tragedy, the deep soothing that comes from being acknowledged in my raw honesty by my beloveds and the healing power of being witnessed in our humanity by strangers - who suddenly become human.

After I calmed down Tad and I separated then moved to the check-out counter where the young cashier smiled and said, "You guys having a good day?"

We looked at each other and in unison replied "Not bad, thank you."

a new phase

2011-08-25T17:50:00.000-07:00

Yesterday I was really looking forward to getting back to the hospice and spending time with T, a thick-bearded, Harley-loving softie of a man whom I had fallen in love with just last week. Sadly when I arrived he was no longer verbal. In just a short week his brain cancer had silenced him.

Then as I was walking from the hospice to the weekly meditation place I love so much I found a huge multi-layered, flower-covered, ad-hoc sanctuary on one of my usual street corners. According to one of the cards on top a 23 year old girl who'd recently graduated college and moved to San Francisco -- her favorite -- was struck dead by a bus while crossing the street.

When I think about how fragile a human body is compared to say a MUNI bus I'm amazed that some of us live to be in our 80, or 90's.

Yesterday Tad made the decision to not continue chemo treatment. Clearly he will not make it to his 80's. He will probably not see 2012.

The oncologists conducted a bone marrow biopsy and have found lots of leukemia in his bone marrow and next to no healthy cells in his immune system. The chemo has wreaked havoc on his bones but the leukemia just keeps coming back - the strange tenacity of simple living organisms. The docs offered to treat with more chemotherapy but insisted any successful outcome is highly unlikely.

The truth is I have been yearning to go home with Tad for a long time now. I have been yearning to sit and watch TV with him, to cuddle with our cat, to prune flowers in the garden, to feel the love that has held us through so much.

The excruciating truth I have to live with is knowing we'll go home together but he'll leave the house on a stretcher no longer to shine his beautiful smile in my life.
And I hate that we have no choice in the matter.

My loving dad told me how much he has watched Tad's love transform me; how much more loving I have become since entering this relationship. Tad is easy to love. And somehow by loving him and being loved by him - I have learned to finally love myself.

So many people comment on how lucky we are to have this much love, what a rare thing it is. I can't bring myself to believe that. What I do believe - and how I find hope - is that love continues beyond physical bodies. And in deep love are strange powers and properties that remain a mystery to me.

Each time I've stumbled in life the solution has always been some form of "More love" or more accurately "Love more!"

May we all continue to "Love More" even when our hearts are lying on the floor aching from loss or the anticipation of loss.

los angeles

2011-08-16T21:59:00.000-07:00

Early into this adventure we were told by the very first oncologist that we would have to choose either Stanford or UCSF as a follow-up hospital since only they could perform the lifesaving transplant Tad will need once he is in remission.

Thus we moved to UCSF where after a few months we discovered they would not be able to transplant Tad. He has a complication that means his transplant must be done within an experimental protocol.

Suddenly we found ourselves searching for hospitals with that particular protocol.

We called many of the major cancer centers in America. Our team at UCSF tried others. Only one cancer center in the US was willing to transplant Tad: Seattle.

That is why we agreed to go up there at the end of June in order to meet with the team and discuss how to make that happen. We found ourselves living the most surreal of realities when the morning of our meeting Tad told me we needed to call 911. He ended up being rushed to the very hospital that may be able to save his life - and then spent 16 days there.

But while we were there we also discovered some of the downsides to being at that hospital: Tad would have to establish fiscal residency in Washington. He would have to transfer his Medicare to Washington at the risk of going through a period of transition without insurance. The other risk would be losing his home in Santa Cruz - the most stable anchor in his world.

So it was with some relief that one of the oncologists at Stanford informed us that City of Hope Cancer Center in the northeast part of greater Los Angeles has two patients with the same medical history as Tad and are interested in conducting the protocol.

This afternoon they called Tad to set an appointment for an intake!

This is immense news for us. Tad's insurance would not have to be toyed with, because we would still be in California. LA is much closer to his blood family in Arizona than chilly Seattle. And the cost of living there is lower - an important point since it will no doubt be a six month stay for both of us.

It's a strange thing to be given this news at a time when everyone is in "wait and see" mode.

The doctors, the nurses all come into Tad's hospital room and we talk about the day's aches and pains. We discuss the swelling in his ankles, his appetite and the present pain regimen. Vital signs are analyzed and everyone agrees he's doing quite well.

What we don't talk about is the fact that a body can only take so many rounds of chemo; the fact that Tad's leukemia may just come back after all this pain.

More than anything I want these people to tell me my future, to tell us our future with absolute certainty. That is the one thing they cannot do. They can only tell us the next step to take.

The discomfort of that is palpable.

This morning -- before the phone call -- I arrived in Tad's room, sat down on the bed, took his hand and without words simply wept. He saw my face screw up and began to weep too. Together we sat in gentle silence holding hands and crying while looking into one another's eyes.

Sometimes our sorrow is so big it can't be kept at arm's length any longer.

When we were done we wiped our faces in silence, declared our love for one another and had a great lunch of real, all-American hamburgers and potato salad followed by a rich Mexican flan.

Hamburger, flan, love and tears. What more could I possibly need?

eight more days

2011-08-11T17:09:00.000-07:00

Tad has had one of the least painful rounds of inpatient chemo since his diagnosis 18 months ago.

Only in the last 48 hours has he begun to develop real GI complications and severe bone pain. During a couple previous hospitalizations he was in ICU well before this stage.

He has been doing activities on the computer, keeping up with friends, taking care of administrative tasks and still maintaining civilian clothes. The last couple days were the first in which he could not get out of bed, gear up with his space-age face-mask and walk to the cafeteria or adjacent atrium.

Internally the oncologists have done a bit of research and determined, after boring a hole in his hip bone, that they have "destroyed all the leukemia" - the initial goal.

This is good news.

But it is dampered by the fact that it may not persist once his immune system rebuilds itself.

I was frankly quite wary when he shared this with me and only felt a bit relieved a few days later when I had had the opportunity to speak with an oncologist myself.

This very warm woman explained to me that this was indeed a good thing and that as always we have to keep playing the waiting game to see what will happen long term.

Some of the options include having him do a second round of this chemo, having him receive a bone marrow transplant if the leukemia stays at bay or having him go home and call it quits if there is no real lasting remission.

The same day the team shared the good news with Tad they also said they'd been in touch with a reputed hospital in LA where a patient has nearly the same medical complications he has and where they may be willing to do a stem cell transplant. This would mean NOT moving to Seattle for six months, NOT having to leave his house in Santa Cruz and establish fiscal residency in WA for insurance reasons. The hospital staff have since called us twice asking for more medical information. We are still awaiting a final yes or no as to whether they can offer us this service.

In the meantime we have changed attending oncologists and the whole feel of the oncology team is different. This one is led by a German woman who smiles, makes eye contact and introduces herself by her first name. On her first day she introduced all the team by their first name - which feels more natural to me anyway since most of them are half my age. She asks questions and asks permission to do the next thing ("May I listen to your breathing?" "Do you mind if I lift up your shirt?").

The feeling in the room is diametrically opposed to her predecessor who was here when we first walked in. We feel heard and seen by these folks; we feel like we have allies.

Contrary to the previous guy who asked "Have you tried City of Hope in LA?" (the hokey name for the otherwise excellent cancer center), this team contacted City of Hope and were able to deliver good news.

My own form of pain goes in and out. As I sit in an empty house in a high-end suburb I become aware that my career is on hold, that I haven't had a vacation in a very long time, that I have no real community down here and feel disconnected. Rather than stopping to remember all of the people around the world holding me in my heart I flail, I look for things to do, I try to find an answer outside of myself.

Sitting down and remembering love is often the most potent thing I can do for myself. Yet I keep grasping for answers outside of me. The former is just not very sexy, it's too subtle, too simple. It lacks drama. It's a gentle glass of good wine compared to the strong shot of whiskey I get from calling friends to hear me bitch and moan, or spending three hours on Facebook til something attracts my eye and distracts my brain.

The sweet oncologist tells us Tad has about 8 more days in hospital. My busy mind wants to write the next sentence; tell the next part of the story but we don't know what that is. So for now I'll leave it at that: Tad will probably go home in about eight days.

stanford day 13

2011-08-03T09:16:00.000-07:00

I'm sitting in my apartment in San Francisco while Tad is lying in a bed in the basement of Stanford Hospital.

This hospitalization has been tough on us but not for reasons one might imagine.

Tad is doing relatively well. Normally on day 13 of a chemo protocol he is really sick - (think profuse sweating, abundant diarrhea, lack of appetite, confusion, loss of weight, etc).

But he continues to wear his own clothes (impossible when you're really sick), takes walks to the nearby garden and atrium, doodles on his computer, and talks with friends and family in person or by skype. He has some difficulties with his GI track mostly a sore throat which makes talking a bit painful. But what is usually a roller coaster is feeling more like a fast ferris wheel.

He is on a highly technical unit. There is a zone in front of each room where guests suit up and glove up. If he leaves he must wear a high-tech hexa-mask. We never see the other patients because they are so sick behind closed doors. Most of them have a family member in their room with them full time (in part because hotels are so expensive in the wealthy Silicon Valley). I get brief glimpses of these family members during my runs to the kitchen for ice water, to reheat a meal or to get a soothing pop-sicle from the freezer.

In the evenings I return to a big empty house in a very tony neigborhood that is generously on loan to me by sweet friends who just inherited it (Yes you guessed it: someone just died in it and not much has budged since her corpse and the hospice team left several weeks ago).

The team relate to patients almost entirely on a pathology level: each one comes in and asks a litany of questions, usually a list of symptoms that he can endorse. In this case he doesn't endorse any of them because he's not having the long list of symptoms that usually occur.

I know this sounds like a good thing but there is a more painful insidious effect which has taken me a while to identify: in the same way a passing woman can be seen for only one thing by cat-calling construction workers or an army enlistee is only seen for one objective by a drill sergeant so we seem to be seen for only one thing, cancer symptoms.

Unlike other units we've been on caregivers don't ask us about our relationship, how long we've been together, where we're from or what we do as careers. Unlike other units they don't share pictures of their kids or tell stories about the outside world: their latest vacation, or the marathon that caused them to be late for work.

Tad has begun to get cranky and my fuse is so short I have little patience and empathy for his crankiness.

Yesterday a nurse's aid came in for the umpteenth time (all gowned up each time) and asked if he had peed in the last 7 hours! When he replied he would appreciate it if she could group her questions together so as not to interrupt him so often she turned to me "Has he urinated since 3 PM?". I hate it when people use the third person in front of someone) so I told her to ask him. She did and he simply responded "I"m not going to tell you." She walked away.

On my way out I spoke to someone from the nursing team about it explaining that we're feeling prickly, hoping to smooth any wrinkles this might have caused. She replied, "Oh is this his first round of chemo?" - enhancing my feeling of not being seen.

The next day while writing in my journal in the backyard of my suburban nest it hit me: I need someone to see all of me, or at least more of me. I need a witness to my story. More than that I need to know these caregivers understand my story so that they can make the best decisions possible (and not reproduce the mistakes others have made in the past).

If I'm feeling this way it's safe to assume Tad is too.

I immediately found a nearby church on Google maps and contacted a minister for support - (I checked to make sure they weren't a gay-bashing congregation). I called the social worker at the hospital and asked for an appointment. I then called the hospital chaplain and did the same.

"I need to talk with someone who can see me with more than a medical brain," I started each time

I shared between gulps of tears that we need to be seen, we need to be sure we have allies who "get us", who get "the big picture". We need people who don't just use 10% of their being to relate to us but also people who are able to bring in their heart, their feelings, their touch.

Amazingly outside of these two people there are no mental health professionals available to see patients with cancer. There are two art therapy volunteers but they are not allowed in the rooms of immune-compromised patients (anyone with a blood disorder like leukemia). There is a massage therapist for $30/half hour but she is not allowed to touch patients with low platelets (most people with leukemia chemo). I offered to hold a circle of family members in the family room twice per week so that we could share our stories for more than two minutes in the tiny kitchen. The social worker told me that was a bad idea; I can attend the once per month group she facilitates.

Ironically they both recognized this is a common complaint they hear - patients not feeling seen.

They did offer Lorazepam.

Last night I couldn't fall asleep in my comfy familiar San Francisco bed for reasons that made no sense to me. My last cup of coffee had been at 3PM - a safe margin for me. I found myself wearing a bathrobe, walking in circles and praying aloud to some unknown god to heal Tad this time, to take away the leukemic cells.

This round is being presented to us as the last option.

I grabbed some relics off the altar in my hallway -- a photo of my grams, a Buddha sculpture from Tibet, a candle, an American Indian bear-tooth from a medicine man in Northern Quebec. I called in my dead friends and ancestors: Stephen Yelvington, Melanie Querre, my grandmas. And I sat down in tears in the middle of my living room to invoke and distill into one spell every drop of love I've ever received in my fifty years of life: Heal Tad. Take this away. Make it stop.

At this point in my life I know very little about anything. I sometimes wonder who I think I am to want one life spared in a world that is so full of suffering.

But I know more than ever that love heals. I hope it can heal cells across time, across distance, across lives.

stanford hospital - day five

2011-07-25T10:05:00.000-07:00

Stanford hospital wanted us to be in Oncology early Wednesday morning: "We need you here at 9AM." This meant loading the car with Tad's belongings for a month and slogging through crazy Silicon Valley morning traffic - an idea that makes me shiver with anticipation.

I called to ask for an extension and they never called me back. When after forty-eight hours I rang to get a reply they called back with a completely different answer because they hadn't really understood the question. The day before our arrival I finally spoke to a human being and got things squared away so I would at least know where we were going. I decided to pick my battles and not say anything about my feeling of not being respected in the face of this cavalier behavior.

So I was only half surprised when we arrived and the staff kept asking questions as if they knew absolutely nothing about Tad and our arrival there. This went on for about 48 hours.

Turns out in the three weeks between our initial meeting with the oncologist in an outpatient clinic and our arrival there - no one bothered to collect our files from Tad's previous hospitalizations.

When the attending oncologist finally came through for rounds and explained to us that it would be a couple days before starting chemo - Tad and I both politely but very firmly expressed our discontent.

(Keep in mind that during this whole time we're in a sort of basement room which is a bit dark despite the beautiful gardens outside, it's very technical in case of emergency despite the warm color and the flat screen TV, people have to gown up before coming in the room except me for some strange reason, and it sorta feels like very costly captivity - so you don't want to just come here to do crossword puzzles for three days).

Here's how I imagine the scene would flow in a normal setting:
Doc: "Oh I'm sorry to hear you're upset. Yes I think there must have been a mistake because no one told us about your meeting three weeks ago with Dr Medeiros hence we don't have your files from the previous hospitalization. We're sorry. Plus we like to have fresh data if possible so we're just going to run some tests then get started - it should only be delayed by about 36 hours. Please bear with us."

Patient (and/or charming husband): "Well that's a little frustrating since you've had at least three weeks to get those files but thank you for telling us. We'll be more patient."

Instead it went something like this:
Oncologist: (Extremely uncomfortable, looks down at the floor and takes two steps back).
Fellow: (another much younger doc getting trained in hematology-oncology jumps in as part of her schooling) "Well we're doing everything we can to help you. We just want to make sure we have the right treatment and for that we need a clear picture of your leukemia."
Tad (or me): "You mean it's not going to be the treatment we decided on three weeks ago with Dr Medeiros?!?!"
Fellow: "Well probably - but we need to do a bone marrow biopsy."
Me: "Tad just had one a month ago. So I don't understand - you're inferring it may be a different chemo. Who is our treating physician here?"
Oncologist: "Dr Medeiros" -- then the standard stuff about training hospitals and rotating staff -- and various other banal phrases he mumbles while looking anywhere in the room but at us...
Tad: "But I had a bone marrow biopsy done about one month ago"
Fellow: "You mean after you got your last round of chemo in Seattle?"
Tad: "No I never got chemo in Seattle."
Fellow: "Oh but I thought you were referred here by Dr Estey in Seattle."

I'll let you imagine the rest.

After this exchange and others similar to it I asked the very sweet social worker for some guidance.

She told me that the first few days are often awkward because the team rarely has the big picture of the patient, that documents rarely arrive as planned from other hospitals and that docs tend to have the very bad habit of thinking out loud - a highly anxiety-provoking way to work with new patients.

I kept thinking it wouldn't be quite so bad if 1) this weren't Stanford - arguably one of the best medical centers in the world and 2) these people weren't extremely well-trained and well-paid experts in medical care. If they can't get down a first encounter with a patient then who can?

As I speak to the social worker I become aware that this is about a very old wound: the feeling of not being seen for who I am.

Surely these folks understand we're both well aware this chemo might save his life but it also might kill him. Surely they get we've been through 15 months of hell living day in and day out with night sweats, chemo, diarrhea, fear.

They don't even need to know the more gory details such as the number of times doctors as imminent as them have told me that Tad isn't going to make it through the night or even better "Get your affairs in order", the medical euphemism for "You're not going to make it through the week/month."

What's missing from this picture for me is empathy: the willingness to stop - even for a few seconds - and use your imagination to wonder what the other person might be going through. In that short stopping and wondering before you put your hand on the doorknob - you take in the other person's reality for a brief moment and it changes the way you are with them.

I can't imagine these folks -with their incredible wealth of knowledge - don't have space left in their brain for imagination.

While we were at home in Santa Cruz we had in-home nurses giving Tad a saline drip at night to keep him hydrated. One of them had a beeper go off during our appointment and it suddenly occurred to me: "Oh of course he has other patients". The talent of this caregiver was that during those 45 minutes he was so present to us that we could almost fantasize we were the only patients in the world.

It lead me to wonder: why would it be in a caregiver's interest to make it clear to you through their verbal and non-verbal behavior that they have lots of other patients besides you?

* * * * * * * * * * * * * * *

I was told by a dear friend that I work best when I have a "bad guy" - a phrase that I didn't really want to hear but which seems to be true. I imagine this is one of my strategies for living with the painful reality of hovering death. At the same time I do know that gratitude is an amazing healer for me. So let me finish by sharing some of the things I'm really grateful for:

1 - I am grateful that Tad is in good spirits, is alert, is in a quiet room with a view of a garden and is surrounded by top-notch professionals who are clearly prepared for the period of sickness he's about to go through from chemo.

2 - I am grateful that the wonderful Scott and Emily have loaned me their mom's house down in Silicon Valley where I can sit outside in the morning and sip my coffee, do yoga, relax to the silence. I'm grateful for the gentle evening sunset light on the coastal mountains above us.

3 - I am grateful we have this opportunity against all odds to try to stop the leukemia again and not give up. I am grateful we have a team of professionals willing to take that risk even though they know it might kill Tad.

4 - I'm grateful for Sara who is house-sitting in Santa Cruz, Ian and Jeff who are staying at my place in SF. I'm grateful for Ron and Damien who visit and take care of Tad's garden, Kim and Jim who are growing vegetables for us for the Fall and for the many friends who call and send messages.

Maybe I should have started with the gratitude part...

living with dying

2011-07-19T14:09:00.000-07:00

Living with the stark reality of life and death has been an incredible discovery forcing me to see how I've spent inordinate amounts of energy denying it.

In my early twenties I made serious life decisions on a whim --and hurt a lot of people in the process-- in part because of my deep conviction that life would go on forever for others and for me.

This is perhaps not too uncommon for young people. But as a middle aged adult I see so many decisions in my life are based on the idea that I will continue to live a long time as will all the people around me. Maybe we will - maybe we won't. But it's definitely more comfortable to believe we will.

I hear people say things like, "Live every day to the fullest" and I resist the temptation to roll my eyes.

Yet here I am and here we are.

Tad's wedding ring came back from the jewelers where it got expanded and while we shared our pleasure we also had the discussion about what I should do with it if he dies.

With every voice mail that he leaves I go through a two minute wrestling match with myself: keep it or erase it? keep it? erase it? I have saved a dozen already.

I reach to touch his upper arm and remember the titanium piece holding his once broken bones together. And I wonder how it will survive cremation.

In one Buddhist tradition monks actually practice a form of meditation by which they are invited to imagine the corpse of someone they love being eaten by bugs; a centuries-old practice in reminding ourselves that life is ephemeral.

As Tad and I pack our bags and prepare to head to Stanford Hospital for another month of chemo, sickness and hopefully immune rebirth we are both aware that each go-around is harder on his body and less likely to render his leukemia remissive. We're both aware that the chemo itself might end Tad's life. And at the same time we see that the bone pain is getting worse and worse, the leukemia slowly eating away at his marrow.

Yesterday while coming home from meditation it occurred to me: if a doctor told me tomorrow that I have three months left to live I feel pretty sure I would take it in stride. I can't be certain of course but I feel I've lived a full, beautiful, love-filled life. I wouldn't exactly be happy but I feel like I would be at peace with this idea (as much as one can imagine the unimaginable).

So then the question emerges: why do I fight with every cell in my body the death of this man I love so dearly? Why do I want --more than anything in the world-- for him to continue living not too far away from me?

At the same time I want our life together to be stress-free. I want relief from the indescribable pain of powerlessness I feel every time he winces or moans from the deep bone aches.

Sometimes my own broken-heart-pain makes things so difficult I can't support him; I get curt and impatient. At times I imagine the only way we'll ever be free of pain and stress is for him to die. It reminds me of those days in the 80's when certain gay men got infected by HIV because they could no longer stand wondering when the other shoe would drop.

* * * * * * * * * * * * * *

I'm told the Jews who moved to Israel after surviving the Holocaust were not really listened to by the locals. Their stories of pain were no doubt too much for other people who were busy building a nascent country. I imagine this is true for Tad's and my story; that some people stay away because of the sheer pain of being around us.

And yet...

How can I convey the amount of sweetness, beauty and love we experience every day. When I try to explain it I find myself wondering if I'm selling my psyche a line of bullshit. Is this really true or do I just tell myself this to avoid feeling the incredible pain?

I think it's my mind playing tricks on me. What brain could possibly imagine immense pain and deep joy at the very same time? It is indeed a rare thing for us humans to experience! The beautiful Julia tells me this is one of the "cancer lessons" her dear friend taught her as she was dying: joy and pain as two sides of the same coin.

For some reason this morning I found myself remembering two classic phrases I often heard during my childhood Christian education: Peace on Earth (during Christmas) and Love thy neighbor.

It suddenly occurred to me that these are not some impersonal generic ethos for me to live by; these are concrete solutions to real-life issues right here, right now.

I can strive to find peace in my heart this very minute. I can actively love and be loved by those who surround me.

Despite my sorrow these two lead me to experience a third dictum: Joy to the world.

Joy to the world even in the face of leukemia.

going to the chapel (and stanford)

2011-07-06T12:59:00.000-07:00

Our arrival in the Heart Lodge - greeted by the oh-so-sweet Gregg

Exchanging vows in the presence of our community.

Tad and I made it to Saratoga Springs for the summer Billy gathering.

It was glorious: 95 degree northern arid heat, tree frogs, woodpeckers and other wild birds chirping and chatting throughout the day, cool breezes flowing in before nightfall, short dips in the giant hot tub or the pool, naps beneath the trees, long meals on the front porch of our cabin with loving friends.

And of course the peak moment of the event was our Sunday Celebration of Love and Commitment.

The Billys --as they are called-- are a community of men (and a few women) who came together during the early 80's to help support isolated men with HIV in rural Northern California. Since the AIDS epidemic took a decidedly less fierce turn in the mid-90's the community has developed into a tribe that chooses to come together every two months or so to share and play, to debate and explore, to breathe and meditate, to do yoga and make music, to nap and frolic and to eat really good food! Hidden far from view beneath the smiles, the hugs and the kindness are the other roles we play in the outside world: advertising execs, doctors, fundraisers, rabbis, therapists, priests, retirees, computer geeks, unemployed, activist, botanist, editor.

This is also the community that has participated the most in keeping money in our care slush fund as well as coming to the hospital and house for visits, offering massage and even preparing and freezing gourmet meals that have come in handy; all the perks of a church community without all the rules - except for the golden one! Their presence in our lives is unimaginably precious.

The summer gathering - the largest of the six - seemed the perfect place to celebrate our love.

And so we did.

About one hundred or so of the people present at Saratoga stepped out of their many activities on a very hot summer day to sit with us, to witness us, to bless us.

During the hard days of AIDS Gregg Cassin pioneered what would be called "Healing Circle" an event which brought people in pain together in the Castro every Tuesday night year in a year out. He lovingly agreed to organize and officiate the ceremony. Our talented cook Burt whipped up an amazing three tiered cake -(little did he know it was Tad's favorite: white cake with light cream frosting) - which John, a design whiz from LA covered in pink, blue and green foliage. The multi-talented Ilyas played the cello deeply and beautifully, handsome Tom read Walt Whitman heartfully, Joe gave us an American Indian blessing which Ezra matched with a simple, poignant Hebrew one. We began the ceremony by evoking our ancestors (especially our loving grandmothers and Tad's mom) and ended by exchanging declarations of love for one another, promises to one another and rings to seal the deal. The final gesture was a touching, hands-on blessing where everyone moved into send us on our way with love.

Unfortunately the huge swings in NorCal temperatures (mid-90's by day, low 50's at night) caused Tad's bone pain to get worse. He went from being perky and energetic at home to being mostly housebound and in excruciating pain during the gathering.

The morning of the event Gregg took me aside and asked me if I didn't think it was too much for Tad - he seemed so weak and in so much pain. Not surprisingly I had already asked Tad the same thing and he responded he was determined to do this. I told Gregg: "Don't worry he'll knock their socks off."

And indeed he did.

There is nothing like the soft loving voice of someone visibly caught in hand-to-hand combat with life and death to move an audience. The equal presence of deep love and potential death was palpable. We all knew it, felt it and it helped us all remember the pain of our many losses from the past but also what is important to us in our lives in the present.

Or at least that's what I THINK was happening since most of it was a fuzzy, buzzy blur of tears, sweat, laughter, fear and joy that kept my brain from processing - not a bad thing for my overworking grey matter.

What I haven't yet mentioned is that on our way to the gathering we stopped at Stanford to meet with the oncologist recommended to us by the Seattle doctors. He agrees that there is still a possibility of attaining remission and, though it will make for a rocky road, he is willing to give Tad another combination of chemotherapy. Tad has decided that he wants to pursue more treatment. The protocol will look a lot like the previous ones: five days of chemo followed by an immune system that bottoms out then regains strength as the leukemia cells die off. The protocol he is proposing is not the one that Dr Estey in Seattle recommended but it is one Dr Medeiros is comfortable with, has experience with, and a treatment which he has seen patients similar to Tad use to get rid of a stubborn form of leukemia. He will be in the hospital and in isolation for about a month and then come home while we wait for the results.

For those unfamiliar with the Bay Area, Stanford is almost equi-distant between Tad's and my house. It's a quick ride to San Francisco. So hopefully I'll be able to spend more time in my own digs. I'm praying they don't have the standard-issue, uncomfortable, fold-out beds for family members for those nights when I do want to spend stay over with Tad. Also a friend nearby has offered to let me stay at his mother-in-law's nearby house which he and his wife have just inherited.

So Tad's immune system is shot. He stays alive thanks to donated blood. We both know that something could happen and he could die very quickly - or do we? Can any of us actually grasp the reality of death before it happens? I don't think so.

What I know is that we are still in the game. Tad is still doing lots of things each day. He looks stronger and healthier than he has in a while. We're surrounded by incredibly loving people and as I said during my vows: there is no other place for me to be than by his side.

The delicious white cake covered in roses and wild flowers.

The community laying their hands on us "Avatar"- style!!

The exchange of rings - still getting used to wearing a wedding band.

The morning after - Tad, Bill and I - on the front porch of our cabin.

held in the arms of gratitude

2011-06-30T07:34:00.000-07:00

Tad and I met during a men's retreat five years and one month ago in a gorgeous valley in Northern California where lithium water gurgles out of the ground; a place called Saratoga Springs. We've tried to get back there several times since his leukemia diagnosis 15 months ago but each time he was too ill.

We've decided to return to Saratoga for the July 4th weekend since we've been experiencing an amazing period of respite from illness over the last two weeks (except for the two times he nearly fainted and scared the hell out of me and the moment of panic yesterday when the nurse suggested the implanted line that delivers blood parts and fluids directly above his heart may have shifted and no longer be in the right place - besides those little inconveniences...).

I imagine the relative absence of gut-wrenching symptoms is due to the fact that the last chemo is now nearly two months away and most of the toxicity has been flushed from his body. Also when the docs last checked his bone marrow, said chemo had done a good job at knocking the leukemia cells silly (but not completely gone). Three weeks ago he had a level of 8 or 9% of leukemia cells in his blood which for some patients is actually an acceptable level for a stem cell transplant.

We are heading to Stanford University Hospital tomorrow to meet with the oncologist recommended by the folks in Seattle (heretofore known as The Oracle). We will discuss a couple of treatment options in the hopes of getting back into lasting remission followed by a transplant. If Tad should decide this is what he wants of course it means more chemo and its consequences: loss of appetite, mouth sores, nausea, diarrhea, profuse sweating, loss of immunity, bone pain ie the trifecta times three to the third power. And of course we're being told that statistically there is more probability this won't work than the contrary. Not a simple decision to make.

Knowing that a storm awaits us has not made it easy for me to enjoy the relative calm of these beautiful summer days together in Santa Cruz. It's one thing to try to stay present with fears of some unknown cataclysm just around the corner such as an earthquake, global warming or I dunno...the rapture - it's quite another to know that a specific cataclysm awaits you. I dare you to stay in the joy of the moment. But after a few days we seem to have managed to let go of fearful thoughts of the future and settled into the serene life we love.

Tad has been rummaging through boxes of stuff, getting rid of accumulated junk - (a day I've been waiting for since we met!) Yesterday he had the radio in his car fixed while I took my car to the garage for a leaking something or other. We've been barbecuing, gardening, listening to music, watching silly movies (violent or graphic movies -- once his staple -- are now unbearable to him). Friends come and go, the cat keeps us amused and various nurses, social workers and physical therapists drop in now and again. Our life is sill punctuated by three visits each week to the local outpatient oncology unit where Tad receives blood parts donated by complete strangers which keep him alive. We've named this place the Vampire Suite.

We all know that this period may also be our preparation for the end of Tad's life. We were finally put in touch with a local palliative care team (palier in French = a landing on a staircase - hence this refers to care where the team meets you where you are at in your treatment). Unlike some of the local docs who appeared really frightened by how sick Tad had become and were recommending against any more chemo, the palliative care folks accept that Tad continue to be on a curative treatment plan while they surround him with the kind of supportive care he needs. It looks and feels a lot like hospice of course - and the truth is it's probably the same team - but there is no need for him to stop getting blood parts or to sign a "Do Not Resuscitate" order.

These broken fragile hearts of ours, ripped open by the arrival last April of noxious cells in Tad's bloodstream, are now enjoying the incredible beauty of living life here and now, of deep gratitude for each moment. We weep regularly in the face of a hug from a receptionist, a loving phone call from a friend or the memory of some beautiful moment from the last 61 months of life together. Astonishingly these are not tears of regret or bitterness over the cruel randomness of disease but rather gratitude and joy; rich, potent thankfulness for the many loving moments we've experienced and continue to experience.

So it only seemed fitting that I put back on the table a topic we hadn't mentioned for several months: a commitment ceremony. The wording is far less elegant than the more simple words "wedding" or "marriage" but that particular ceremony has been taken away from us by 50.5% of my fellow Californians who consider us second-class citizens and and somehow fear we will subvert the rite.

Last night as Tad and I prepared to curl up in bed to watch the totally forgettable "Get Smart"- a big bowl of popcorn at hand, Astra dozing at our feet and the IV pump ticking away - Tad gave me a ring he'd bought that day: a simple, slim, silver ring.

And so it's with immense pleasure that I announce (with Tad's permission) that Sunday at 4PM Pacific Time (7PM Eastern, midnight in GB and Ireland!), Tad and I will be wed in a ceremony officiated by Gregg Cassin.... Sadly none of our blood family will be in attendance. Tad and I have always had the fantasy of getting our two dads together because they are so much alike. It's clear to us they'd hit it off like a house on fire. But the very good news is we will be surrounded by some of the most loving, open-hearted men one could have the honor to meet. Just us and 140 of our best friends...

As an adult I had only actually attended weddings of influential people in France and Italy: aristocrats, famous people, wealthy heirs. It went with the territory of being a snob myself. These rituals were all about the clothes, the caterer, the house, the guest list. Then one day I attended my baby sister's wedding back in Michigan and it hit me like a ton of bricks: Weddings are about celebrating the love two people have for one another! They're a public acknowledgment and celebration where two people's deep attachment to one another and promise to take care of each other is proclaimed and purposely witnessed by their tribe.

It is in that spirit that Tad and I will celebrate the love we have for each other, an incredibly deep, mysterious love that has given us the courage we've needed to cross some rather murky waters.

Wherever you are in the world on Sunday July 3 I invite you to light a candle, take a bow, say a prayer or burn incense for the love that binds Vern Raymond Thaddeus Crandall and Gregory James Rowe.

May it spread to the world. May we all know peace and love.

a hard sell

2011-06-19T09:23:00.000-07:00

We have been home in Santa Cruz nearly ten days. Tad has decided he needs to be here to make a decision about his next treatment or whether to stop altogether.

It has been especially trying for me. As much as life in Seattle felt totally rudderless I at least had adrenaline from the adventure of having to do everything from scratch. Plus I had some relative structure: walk to hospital, check in with nurse, spend five or six hours with Tad, walk home from hospital. Shop, eat, sleep, repeat.

I am trying to find those things back here in Santa Cruz but there is something about the not-knowing that is painful and distracting. I have begun developing symptoms of depression: sleep patterns awry, dark thoughts, irritability. My mind has been reeling with what I think is the best thing to do and what life back in Seattle might look like.

Fortunately I have the wherewithal to remind myself the biggest mistake I could make would be to try to impose on Tad my idea of what is right for him at this most difficult juncture of his life.

Clearly I am not the only one finding this terribly uncomfortable.

One of the local oncology nurse practitioners who makes sure Tad gets the blood parts that keep him alive called me just as I was entering a spa to get a good soak and a massage (a weekly pleasure I enjoy in part thanks to the loving financial donations from friends and family):

- "Greg I don't how much longer we can keep giving him blood like this. We need a plan."
- "But Kelly we have a plan. Our plan is to give Tad two weeks to decide to treat or not."
- "Yes but we don't really have a treatment plan. He is no longer seeing the leukemia doc at UCSF."
- "Well no - we're not seeing him. But we're not not seeing him. We're figuring things out. HE is figuring things out."
- "But we need to have a doctor directing this. We can't just keep using our office to give him the necessary blood parts if he is not under the care of an oncologist."
- "Why not? They're keeping him alive. Besides your boss IS an oncologist."
- "Greg we need a plan. Soon. Can you just ask him?"

I begrudgingly agreed to talk to Tad and let him know some of the local caregivers were getting anxious. I also asked him, without wanting to influence, which way he might be leaning. He confided in me he was leaning towards treatment.

This reply set off a whirlwind of responses in me. My head filled with scary images of him being pummeled by chemo once again, of him dying in Seattle and me figuring out how to get him home. But I also had lots of calming images of me organizing my new life up in Seattle for the next six months: sub-lets, road trip, maybe a book project.

The next day the doctor from Seattle sent an email sharing the response he'd received from his colleagues at Stanford. Lo and behold, they are willing to do the same treatment here in California - only one hour away from Tad's house.

I sat with the news of the email for several hours before I shared it with Tad. I really wanted to deliver it with as much neutrality as possible. After all his mind was still not entirely made up.

The impact was huge: an incredible weight lifted from his shoulders and a good sob ensued. He could get the possibly life-saving treatment AND be close to home in case he dies. We would not need to move our household (kitty included) to the Northwest for him to find out if he can survive this disease.

Our joy however was short lived.

An hour later we had an appointment with Tad's local GP, a caring woman who has been a huge anchor for him for many years. The whole meeting took about one hour but the upshot is that she explained she'd had a long conversation with the (above-mentioned) nurse practitioner and they both agreed that the best possible solution for Tad is hospice - though she couldn't really explain to us what hospice care looked like.

"We think these oncologists are not telling you the truth. We just can't see how the treatment can work."

This whole exchange felt like a violation of trust. These caregivers are of course allowed to have an opinion but they were inferring that Tad needed to accept their opinion as the only truth. They also said "for clinical reasons" they may not be able to support him through the other decision i.e. getting treatment.

This last part is still a mystery to me and feels like blackmail. We will need to have more in depth discussions about this.

Tad felt like he had been hit in the stomach. His two closest allies til now are feeling they can't respect his request to take a two-week break, saying that they know better than the oncologists and inferring that if he doesn't opt for hospice that they won't be able to be the local point persons who support him medically.

(I'm going to linger on this topic of hospice and skip all the description about the rest of the day and the hours spent trying to get Tad back on an antibiotic he had got in Seattle but that the local doc doesn't want to pursue except now that she knows more details about what the folks in Seattle found she does want to pursue it only the insurance doesn't want to pay for it and needs a special dispensation and the pharmacy is asking us to pay $80 per pill for 20 pills because it's almost the weekend and they can't get hold of the insurance company but the social worker thinks she knows somebody at the insurance company and Tad is getting visibly sicker and sicker from some infection that looks a lot like the one that landed him in the hospital twice already and all the doc can talk about is hospice and I'm thinking that none of these people has had the experience I've had living in France where medical care is a citizen's right like postal service or access to a courthouse and that this is all so fucked up.)

Twenty years ago 80% of people with leukemia died quickly. Today new meds and new techniques are turning that statistic on its head. But it's far from perfect.

This in between-ness is why a good part of the last two months has been about this exhausting roller coaster wondering whether there is or isn't a treatment, whether we can access it or not, whether we need to move to a different state to access it, whether it's worth trying or not. Everyone has an opinion. And as long as there is one fairly credible doctor saying there's a chance of survival it's incredibly hard to take the other hospice opinion seriously.

I would be dishonest if I didn't admit that there are plenty of times when I simply want this to end. My conscious mind doesn't allow me to go into details about what that end might look like. If I stop and look at our life, at Tad's slowly deforming body, at the fact that he is more and more dependent on me to the point that being able to go spend a couple of days at my own place in San Francisco is nigh impossible - I find myself without any hope of a healthy outcome. Plus I've worked in hospice. I see how amazing it can be. But the folks who arrived at our door had already been through all of this miasma.

I've read the studies about how treated populations compared to similar hospice patients have vastly different end of life experiences and the more positive ones are experienced by folks in hospice. Folks in hospice live longer, have better quality of life indicators and the people who survive them experience less depression. But the study focused on patients who had wanted to keep trying even though the doctors all believed nothing would work.

During our conversation with Tad's GP it occurred to me it's really not easy to sell the hospice option to a patient, particularly a younger patient. In one case the outcome is absolutely clear, in the other it just isn't, there is a glimmer of possibility of living. Even though we know that the chemo option will be painful - it is familiar. We've experienced it before. And human brains prefer to cling to the familiar rather than venture into the unknown. And what could make an adventure into the unknown more frightening than the fact that we're absolutely positive it ends in death?

Plus we're a hopeful species. Romeo and Juliet remains one of the most compelling works in the English language because we hope beyond hope that their love will be victorious. We don't wish for them to "get real" and just accept the fact that no Capulet has ever married a Montague and it's 90% unlikely to happen. We love a good fight and we love to cheer on the victor. People easily get behind Tad and this struggle, they encourage him to keep getting treated inferring it's the strong courageous thing to do. I imagine rooting on Tad is an indirect way for us all to push back against our own inevitable death.

So just how do we compel another human being to say those most difficult of words: "I think I want to stop trying now. It's time for me to accept I am going to die of this."?

waiting and loving

2011-06-13T15:23:00.000-07:00

One of the most extraordinary characteristics of Tad Crandall is reflected in the fact that in the five-plus years we have been a couple he has never asked me to be or do something differently.

I'm not saying he's perfect of course. He can be cranky and moody. He uses words minimally and can get frustrated when I don't read his mind. There have been plenty of times when he's set limits with me usually by saying something like "I can't listen anymore" while gesticulating firmly that he's had enough. It's a bit abrupt but it's far less damaging than "You talk too much", "You need to talk less" or "If only you were less talkative" - all phrases that were written consistently on my report cards as a child.

In fact it's safe to say that Tad is the diametrical opposite of a nagger.

I wish I could say the same about me.

Little by little over the years -perhaps buoyed by a quality of love that I can only define as unconditional - I have learned to stop wanting him to be different. I stopped asking him to watch less TV, to eat healthier food, or, dear god, to not wear THAT shirt.

Perhaps this is the natural course of all couples: we learn to choose our battles, accept that some things are non-negotiable and simply let go. Hopefully - if we stay on the side of love - we settle into something peaceful and caring where we pretty much let the other party lead their lives as they will.

These days I spend a lot of time making sure I am not telling Tad what I think is right for him - even though it feels like it would lessen my anxiety.

In the coming weeks Tad must choose between:
a - moving to Seattle to obtain a treatment that may work but probably will not; a treatment that will definitely cause him all sorts of discomfort and challenge his already compromised immune system.

b - finding a treatment locally that may delay his death for a few months.

c - calling the hospice organization to establish a care modality that will help him die at home in as little pain as possible.

And as the gentle oncologist Dr Estey kindly told us during our final meeting with him in Seattle before getting back on the plane: "Of course making no choice is in and of itself a choice."

In the meantime my job is to wait.

More precisely: My job is to wait and love, to wait and hug, to wait and cook, to wait and garden, to wait and support.

Anyone who knows me knows the one thing I am absolutely the most unskilled at is waiting.

In the last three days my crazy mind has entertained -among other things- the following:
- sitting for the Washington state psychology board exams
- buying the house across the street from Tad
- writing a book about our experience of healthcare and insurance in America
- writing the doctor in Berlin who helped cure a patient with a similar profile and asking him if he will take us
- contacting a Santa Cruz socialite fundraiser for the Leukemia society whose name I saw in the paper and seeing if she can raise $100K by creating some kind of town-wide, reality-show-type, support party that saves Tad's life
- telling Tad to accept hospice
- telling Tad to accept treatment
- moving all of my stuff into storage to free myself of my rent in SF
- finding a sub-tenant for three months to free myself temporarily of my rent in SF

Some of these might be really good ideas. Some less so. None of them looms large enough in my heart and my mind that I am moved to actually make it happen.

Part of the lack of focus is simply due to the incredible brain-drain it takes to be a full-time caregiver. Recently an article was published explaining that part of the reason people in poverty have a hard time getting out is in part due to cognitive overload. So burdened are they by multiple problems that their capacity for reasoning literally becomes diminished and they either make bad choices or, worse, make no choices and end up paying high fees. This sounds incredibly familiar.

Ironically when my mind is racing through all of these scenarios I tend to forget love. I forget we're connected to this huge network of people who ADORE us; I forget the calming effect of the cards and phone calls, the checks and hugs.

I understand why money is so attractive to people. It's so concrete, so universally recognized. Unlike love I never doubt its value or its power to change my circumstances. Love is far more mysterious - and yet deep down I know it is a far more powerful currency.

The irony of our situation is that Tad has more energy and less pain today than he has had in months. The financial model for typical cancer care is sort of U-shaped: lots of spending in the beginning and end with less costs in the middle. I imagine we're in the middle of the U, hovering between treatments, between oncologists, between cities.

Hovering.

And in that hovering trying to remember love.

a quickie

2011-06-07T08:39:00.000-07:00

Upon discharge Evil Doc told us to stay and get two follow-up appointments in the outpatient clinic as part of Tad's care. They wanted to monitor Tad in case something went wrong with his line (the tubes coming out of his chest) and to give him blood parts if the leukemia eats too much of his own blood.

This was good news to me since it gave me time to find a cheaper flight and worked nicely with my secret plan to get Tad to finally meet Good Doc and hear firsthand what he is proposing as a treatment. After all that was the reason we had flown to Seatlle.

What no one mentioned is that the follow-up care in the outpatient clinic would no longer be "urgent" and thus not covered by both insurances. At the end of the day yesterday a woman from the clinic called me to tell me that the 20% out-of-pocket cost for one follow-up appointment would be somewhere between $600 and $1000.

(I must admit I was surprised to hear Evil Doc tell me: "I'll call you back later and let you know how much that will cost". My experience is that docs don't like to talk/hear about money - sorta like Club Med where you get tokens to buy everything.)

I told the budget watchdog woman that Tad and I couldn't afford this and finished with the phrase she didn't want to hear: "Thank you very much - when he starts to get sick we'll just go to the Emergency Room. Have a good evening."

I felt like I had been hit in the stomach. Ironically the woman in question was the one who had told me six months ago to not bother coming to Washington unless I had several hundred thousand dollars cash in hand. I got great pleasure from hanging up on her.

Two minutes later the nurse who works for Good Doc called me. She too had been made aware of the financial situation and was doing her homework. She just wanted me to know that Good Doc had agreed to waive his fee for the consultation with Tad if we could stay til Wednesday when he would be back in town and he was willing to write a minimalist lab order with only the necessities in order to lessen our costs.

Can't imagine why I walk away feeling like shit when I speak to one guy and walk away feeling so serene when I speak to the other.

going home

2011-06-06T08:24:00.000-07:00

I'm in my funky hotel room cum hospital housing near the university while the coffee drips. Undoubtedly my favorite time of day.

The sweetness is multiplied by the fact that I can hear my beloved Tad making repetitive little swooshy noises as he sleeps not far away.

It's so wonderful to have him out of the 14 x 14 sterilized room but knowing he has almost no immune system and two tubes coming out of his chest makes me a bit fearful of just about everything. The washcloth on the counter in the bathroom suddenly looks suspect, the dishes I lay on the table have become potential infectants.

We have two seats reserved on a flight back to SF in two days: Wednesday June 8. We will go down to Santa Cruz where he has decided he will make up his mind whether to pursue this one last treatment or whether to accept the leukemia has won.

I've been doing a lot of gardening while I at Tad's house over the last six months. I see the tenacity of living things. Just when you think you've rid yourself of all the quack grass, another one pops up and within a week they've spread back into your roses. Leukemia is not much different.

Two days ago I received a phone call that left me feeling incredibly serene. It was from Kind Doctor (as opposed to A-hole doctor who was our inpatient attending doc).

We hadn't really spoken since our arrival in Seattle. I asked this man --who had encouraged us to come up insisting he had solutions to offer us-- what to make of two VERY different prognoses. On the one hand he was saying there was hope of getting Tad into remission and yet Evil Doc couldn't seem to get us out of the hospital and into hospice fast enough. I assumed that new clinical evidence had emerged and suddenly made the picture less favorable, no doubt the recent bone marrow biopsy.

He began to talk to me about his philosophy of care. It felt like a line of shit so I tried to bring him back to Tad's biological markers: "Has something changed that you're not telling me about?"

He replied: "This has nothing to do with clinical markers. This is like asking me if blue is better than red. In one case you know the outcome. In the other we can't possibly know unless we try. It's how scientific progress is made. It's how something appears that wasn't there before. You've tried two treatments and they didn't work. But you haven't tried this treatment. It may work. If I were sure it wouldn't work I would tell you to go home and call hospice. But we simply don't know unless we try."

This brilliant gentleman who works with Nobel prize winners introduced himself by his first name and took 45 minutes out of his Saturday to chat with me.

"As you've been seeing it's actually hard to get into protocols. Researchers can't take any risks because the drug companies are afraid their meds won't get to market. So in essence we're almost discouraged from doing anything new - we just keep repeating the same old stuff."

Tomorrow our wonderful friends Mark and Cathie are coming to join us from Portland for the day. This morning we are heading to the SCCA outpatient clinic for the first time. One of the buses I take drives past it and my heart skips a beat each time - it is still that image from a Web site I discovered months ago back in Santa Cruz, our Emerald City.

In the next couple of weeks Tad will decide whether he wants to go through all of the administrative rigamarole to get back into that place or stay home and let the weeds slowly win out. For some reason this juncture feels immensely peaceful to both of us.

(Nota bene: Dr Estey AKA Good Doc is giving a talk at Stanford today and promised to speak to their chief hematologist about taking Tad on with the bold treatment. We will see what comes of that.)

and another

2011-06-03T15:05:00.000-07:00

After finally settling on a treatment and beginning to look for long-term housing for me, we have met yet another obstacle.

It turns out that the hospital will not accept Tad's secondary insurance which covers 20% of his care.

Til now they've been treating because he came in through Emergency. Starting next week he will begin getting curative treatment and thus will shift to another funding - one they don't like.

Once again I've been crying - a lot.

The up side is that because the treatment they are proposing is not strictly a protocol treatment he can actually get it anywhere in the US.

I personally feel like this is the best place for us. I've finally met caregivers who both know leukemia deeply AND are not stressed to the max. I feel completely comfortable leaving him in their care.

Tad on the other hand feels like he'd rather be closer to home, closer to his extended family if possible. After he received the news he was amazingly calm - whereas I walked across campus in a fog -- yet again -- of tears, overwhelm, a determination to raise hell, a rage at our healthcare system and a deep fatigue, a sense that I don't have the energy to fight another huge battle.

Once I got here Tad told me serenly, "It's highly possible this treatment doesn't work. If I'm going to die I want to be close to my home and my friends."

He assures me he's not ready for hospice, he's actually quite eager to see if this new combination works. At the same time he feels trapped in this hospital.

We're waiting for the doctor to recommend a local oncologist in the Bay Area who would be willing to work collaboratively with the Seattle folks.

We're also waiting for the antibiotics to cut through an infection that was caused by Tad's new Hickman line - a tube that sticks out of his chest allowing easy access to his circulatory system.

We may be Californian again some time next week.

another terrifying u-turn

2011-06-01T21:46:00.000-07:00

I woke up this morning with a list of things to do to make my life in Seattle stable.

While the laundry spun, I called a friend in SF and walked him through my apartment by phone as he collected affairs to over-night to me (when did over-night become a verb?).

Before heading out I did my usual chat with the folks here in the house -- the American Indian woman who's 23 year old son doesn't want to get treated for his leukemia, the 52 year old man with small-cell lung cancer who can't seem to get through the heart-wrenching feeling it's his fault, the mother-daughter-son trio who have been here for five months while a sibling has been in hospital fighting a very rare form of cancer. To be honest I mostly just listen...

When I called Tad to tell him I was on my way he informed me the oncologist had done his rounds and announced in front of the flock of interns that their hospital can't help us. Our only option is to go home. My head and heart spun like a tornado.

I hung up and immediately started making calls to the other oncologist, the one who had promised us a solution. Amazingly his team called me back.

I discovered in fact the truth lies somewhere in the middle: Tad does not meet the full criteria of any of the experimental drug trials - contrary to what had been promised to us before we even got here. However one of the protocols combines four drugs that are all openly available - it's the combination that is being studied.

This is in fact the combination the doc thought to be the most promising.

Thus we ended the evening with the same oncologist coming to the room (without his devotees) to explain to us the one option available. He described the many side effects possible and the protocol. He expressed his doubts that it will work but he is willing to try if this is what Tad wants.

This is what Tad wants.

He also gave us permission to go home and take a short break before we start the chemo. He warned that Tad basically has no immune system left (but it he says it's no worse than it was during the last three months when he was living at home).

So it seems we will be in Seattle for a while: Tad in the oncology unit and me nearby supporting him. It's cold and grey but the people are spontaneously warmer than San Francsicans (sorry fellow San Franciscans) and the medical staff are less complicated, more forthcoming.

memorable memorial day

2011-05-31T00:21:00.000-07:00

Yesterday was the first day I haven't felt like I am going to jump out of my skin, first day I haven't shed a tear all day.

The calming process started with me moving into cheaper digs then moving the furniture around to my liking (clearly not decorated by a homo!), finding a Trader Joe's nearby with my favorite comfort food, finding a meditation center within walking distance, getting to know other cancer family members and of course Tad's health continuing to get better and better.

The decision whether to go back to SF and get some of our belongings and a car was immensely painful. Staying seemed like the right thing to do and going did too. When you're living one day at a time with no obligations - there is very little to tether your decisions to. Everything seems in movement thus some decisions seem impossible. And so I've stayed put.

It is good to meet other people dealing with leukemia. There were times when I felt like we were martians.

It is good to become acquainted with my neighborhood (just west of the UW-Seattle campus) and all the little shops, bars, students and bikes.

It is good to have some simple rituals: coffee at the Ugly Mug, daily walk across campus past the huge reflecting pond, chat with folks in the community kitchen.

More than anything it is good to have Tad being cared for by people who visibly know this pathology forwards and backwards. This place is nothing like UCSF where people hemmed and hawed about transplant. Here it is very clear that we all share that same goal and that time's awastin'.

Tomorrow they will put in a new central line so that Tad can start getting chemo. They will do a bone marrow biopsy so they have a clearer picture of what's going on in the bones. They have him on a floor surrounded by leukemia and transplant patients. Even though all of the details have not been worked out - and there are some biggies -- it is clear that the team are moving him toward transplant - the only possible procedure to rid him of his leukemia.

The oncologists would not do these things if they didn't have treatment options, if they didn't think these options might get Tad into remission or if they thought he was too sick to receive treatment.

We've entered the world of clinical trials and these are rigid by nature. I'm beginning to see it's very easy to "disqualify" someone from a clinical trial if they have anything that is not perfectly in line with the protocol. As Dr Estey pointed out - some folks make it impossible to recruit because the inclusion criteria are so unrealistic.

One doc is a naysayer and unfortunately he is Tad's attending oncologist at the time (the badgering guy from ER who I already wanted to punch in the face). Normally he is one of many oncologists who do two-week rotations on the floor. With a little luck we're approaching the end of his two week shift.

I'm aware I feel less called to be polite and circumnavigational with these folks. I feel like by keeping the tone polite, by not asking cumbersome questions, by not speaking my truth I stayed with our previous doc far too long. And he possibly did irreparable damage.

A French historian made a name for himself when he began studying hospitals, prisons and sanitoriums. He wrote incredible stories of the power dynamics that infuse every relationship in these places. He suggested that something similar plays out all around us in society. He wrote so eloquently that it changed the way social scientists think about power dynamics today.

So let's see: One one side there is a man, lying down, physically tired, living with a sword of Damocles over his head, paying to be there, and possibly dying of a disease he can't possibly comprehend. On the other side is a handsome man, with a group of students following him around listening to his every word, he has no visible illnesses, he is well educated and well paid and he knows an incredible amount of minutiae about the disease that might kill the other guy. Oh....and he has access to the meds that might save the other guy's life.

You tell me: Any chance there might be a bit of a power differential in this picture?

You'd think this guy would be a tad more attentive to being accessible to the patient, open to questions, speaking in ways that are both kind and comprehensible, perhaps bending down to put himself at the patient's level...
Just sayin'.

PS We're secretly hoping we will get a short break between now and the beginning of chemo so that we can slip down to CA and collect some of our fave belongings. Some of the docs feel this is completely possible.

hope and fear

2011-05-26T23:20:00.000-07:00

The sub-title should be "The 99 Lives of Tad Crandall"

Tad has everyone surprised yet again.

I almost regret not having followed my gut and flown back to SF Tuesday night - since I felt so sure he would get better. At the same time - our policy has become: "No future tripping and no regrets"; a tough one to uphold at times.

The closest explanation for why Tad has these bouts of weakness, light-headedness and drop in blood pressure that go unexplained is that his intestines are highly sensitive due to the continued exposure to chemotherapy; they may even be semi-porous. Some stomach bacteria may be crossing into the bloodstream at times causing him to have infection-like symptoms. The docs recognize they may never know exactly but this is the best description that two infectious disease, two pulmonary and two oncology specialists have been able to come up with based on an astounding number of tests which have all come back negative.

In the meantime Tad has been getting stronger and stronger, eating full meals, having conversations with folks calling, skyping and visiting and watching television. He vacillates between a bit sluggish and loopy and playful and snarky; he still spends most of his time in bed but he has been taken off all of the apparati that might keep him in ICU as he readies himself to go to a General Medicine/Oncology floor soon and the staff ready themselves for a low-key, three-day holiday pace.

Today I decided to fly back to SF soon - no doubt tomorrow - and come back with a car and more belongings. This isn't exactly how we planned on getting to Seattle but it's the best we can do given the circumstances.

Our beloved Natasha has offered us a flat she owns up in Bellingham - a mere 90 mile drive from here if that is convenient. Clearly I can't keep paying for a hotel room for the next six months even if it's a cheap one.

I spoke to the oncologist who will be treating him and they suggested a bone marrow biopsy but recommended that we give Tad time to get stronger before starting any new treatment. They could feel our eagerness to begin and had to slow us down a bit.

One of the nurses from Santa Cruz called today to ask about him - a gesture that amazes me. I made a point to really express my gratitude for her warm support. She replied something I've said so many times before to others: "Tad is very easy to love. He brings it out in me, he makes me want to be more loving."

When I brought him this message he shared with me how impressed he is by my capacity to already have made lasting relationships with people here who spontaneously come by the hospital to check in on us. He spoke of how my smile brightens the room.

We've both come to a point in our lives where we can actually feel the love that surrounds us - it's palpable. And we're able to take ownership of the loving men we've become.

I told Tad that it's very clear to me that if he should die his love would remain a solid constant in my life. This seemed like a revelation to him - a huge, reassuring revelation. Something he was unknowingly yearning to hear.

As he continues to get better I have begun to panic about the immediate future: my $1100/month flat where I haven't slept in weeks, my health insurance that's connected to San Francisco, my lack of connection to a meditation community here...I know from experience that I only need to focus on the next right step. That appears to be buying one of those really cheap one way tickets to SF on the Saturday of Memorial Day when no one is flying.

seattle

2011-05-25T12:24:00.000-07:00

We arrived in Seattle two days ago for a 24 hour visit with the oncologist - the flight was a bit tough as Tad was weak but it went well all in all. At the hotel he began to feel worse. The next morning as I was packing to get us off to his appointment he told me "I think I need to go to the hospital" - words he NEVER speaks lightly.

Three digits later a slew of emergency medical professionals were filling the hotel room, checking this and that, asking him questions, prodding him. Our quiet little life was suddenly being taken over by plastic tubes, needles, probing questions. Even though I knew it would look like that - the abruptness of it, dare I say the violence of it was overwhelming. A tall dark-skinned fireman wrapped his arm around me while I wept.

Tad is in the ICU. More tubes, more cables, more prodding questions. The team here have not minced their words about the risks of him dying. They asked me not to return to SF where I was hoping to get my car and drive back up with a bit more preparation (I only have one set of clothes and am almost out of my own meds). I agreed to stay here but I am reluctant to take on all the doomsday talk since he has bounced back from moments like this so many times before.

Then again as the rapture predictor has once proven to us: who are we to think we know the future?

While he was being tested for every living creature that can invade a body, I was whisked away by Diane, my guardian angel here in Seattle and the mother of a young lady who survived Acute leukemia, to meet with the oncologist. This was actually another feat of boldness because as his coordinator told us, "I can't bill for this since a patient can't be both inpatient and outpatient at the same time."

Diane and the doc made it happen anyway.

In essence they have two more treatment options for Tad. The first one would get him back home after a week long stay in Seattle the second one would include a longer stay here. The first one has fewer side effects but is less likely to get him into remission than the second one.

Whichever option Tad chooses, the first goal is to get him back on his feet and functioning. And once again the doctors have found nothing. No infections, no bacterias, no vital organ problems - just a general fatigue, weakness, dehydration.

When we got to ER yesterday I was again assailed by doctors who were all talking about end-of-life choices and sort of badgering Tad. We once again found ourselves in the midst of a cultural tension between oncologists who are willing to keep treating if the patient is asking for it and hospitalists who find themselves at times keeping those patients alive.

Doc: "If your heart stops do you want us to rescussitate?"
Tad: "Yes - unless I'm brain dead."
Doc: "Well if you're brain dead you won't be able to change your mind."
Tad: "But Greg has medical power of attorney."
Doc: "But given the setting we have before us (His way of talking about Tad's cancer and treatment) you are aware that you have very few options and little chance of survival."
Tad: "Yes"
Doc: "So if your heart stops do you want us to rescussitate?"
Tad: "Yes"

I restrained myself from punching him or telling him to stop badgering. Even in the midst of extreme fatigue and weakness Tad was quite clear, his voice strong and adamant that this is what he wants. As he said to me when he and I had a similar conversation a few weeks ago: "Why would I stop now? I've come this far. It doesn't make sense."

I can already see that we are in the right place if Tad does survive this. These folks just know leukemia by heart and they are very pragmatic, constantly problem-solving, very patient-centered.

I am staying in a sweet hotel and I walk across the gorgeous UW campus to get here. Yesterday during my walk the sun came out and I was suddenly hit in the gut by the beauty of snow-covered Mt Rainer hovering off in the distance.

I'm scared. I am lonely. Clearly this is yet another American city where you're screwed if you don't have a car. I am afraid I won't have enough money to get by but I know that for now my job is to just sit and wait, to see if Tad gets better once again or not.

I come from a culture that was a bit more "Love the one you're with" than it was "Stand by your man". Standing beside Tad through all of this is without a doubt the hardest thing I've ever done -- and I've done a lot of hard things. I simply can't imagine how hard it is for Tad.

Just had a good cry. Tad asked for food and they've agreed to give him some. Definitely a sign of good health.

graduation

2011-05-17T13:14:00.000-07:00

The oncology team at UCSF has always made it clear to us that if anything dire happens to Tad we need to get him to UCSF as soon as possible. "Come straight here. Do not go to your local hospital."

So it was with a certain mix of surprise and resentment that I heard a doc I'd never met before tell me over the phone with absolute expediency that he couldn't possibly admit Tad once he had pronounced the fateful words: "I think I need to be admitted now."

For weeks we had been dealing with multiple side effects of his chemotherapy and I had been feeling that I needed more in-home care support. At the same time I wanted to respect both Tad's need to be home as long as possible and UCSF's non-chalant attitude about the whole thing. They had always contended that this was a mostly outpatient chemo and that everything would be fine. When I contacted them to ask how to manage this symptom or that they rarely had no solutions to offer.

We went in for a consult and Kelly, the nurse practitioner here at our local oncologist's office in Santa Cruz suggested in a moment of panic I take Tad to the Santa Cruz emergency department to stabilize him before transport to UCSF. And so reluctantly I drove him to Dominican Hospital where they announced to me that his blood pressure was non-existent and things were very touch-and-go.

They kept filling him with more and more fluids hoping he could maintain his blood pressure and his heart would stop beating crazily but to no avail. I watched as some strange machine heated a bag of red blood then pumped it into his veins in ten minutes - a procedure which takes 2 hours by drip.

The words "hospice" began to be mentioned here and there after transferring him to Intensive Care.

The "intensivists" (love that word!) recounted the all-too-common scenario they'd seen time and again whereby patients are promised extended lives by university oncologists then end up in the local ER. They resented having to be the ones who do a reality check with the patient. One of them even shared an ongoing joke about why coffins are sealed; the punch line had something to do with keeping oncologists at bay.

I made my case that Tad had actually been in this state before, at THIS stage of chemotherapy and the main difference being that all of the other times he had been in a very controlled, inpatient environment at UCSF.

I am not opposed to hospice per se but it seemed premature.

They continued the intensive care and kept calling UCSF in the hopes of getting some input. They were finally able to get a hold of his oncologist. While this collecting of information and deciding what to do was playing out - something much bigger was happening: we were being treated like real people with concerns and even opinions and I could see we were receiving the care of a wide net of people who knew Tad.

Tad's doc of many years came by to visit and along with the intensivist we had two half-hour conversations about pain management, end of life care, chemo, symptoms. At times they referred to me and my wisdom as the person who had been caring for him for weeks. Sometimes they even said "I don't know" which always reassures me. Twice his sweet, caring local GP had long conversations sharing her ideas and inviting our opinions and feelings then pulled away saying, "Okay, now I need to make some clinical decisions." It was very refreshing.

The local nurses who have been giving Tad transfusions for months began calling and coming by to visit. His local GP had to leave town but on her way to a mission in Uganda she called from Newark to check up on him. Even the folks from Seattle where we are headed for a consultation were calling to ask how he was doing, then how I was doing.

I went home that night and slept more soundly than I had in months. It occurred to me that I had walked away feeling fully confident these people had our best interest at heart. I also realized I had rarely had that feeling with the oncology docs at UCSF - only with the nurses charged with executing their orders. I had always walked away feeling that they were only sharing part of the story with me, the sense they were constantly dancing a distancing dance. Not surprisingly I got confirmations here and there that this was in fact true.

After a few days Dominican moved Tad up to a general medicine ward. At one point a man in shirtsleeves with a stethoscope entered the room, made eye contact, extended his hand and smiled. "I'm David. I was just checking up on the two of you." I felt immediately seen and expressed my concerns about infections in the central line and whether it was still necessary. I spoke openly and frankly assuming he was the RN. It wasn't til the end that I found out he was the attending doctor. (Did I mention that til then all of the docs had introduced themselves by their first names?)

In my journey through this foreign country called healthcare I had read all the signs and symbols and assumed that caring, smiling and forthcoming meant RN or Nurse Practitioner but now that I was in the land of caring medical professionals I mis-translated.

Today Tad is getting out of the hospital. His white blood cells have quadrupled in the last few days. He is stronger, more alert, able to eat full meals. His dad and step-mom arrived from Arizona last night and are keeping him company in his little hospital room. I'm at home making bouquets and prepping the house.

This morning I wrote extensively in my diary about how I can let go of the disappointment and anger, how it's important I not cling destructively to the resentment that some caregivers don't always meet up to my expectations (an old theme in my life).

With a breath I blessed them all and announced we're graduating from UCSF with gratitude for keeping Tad alive and we're transferring to the University of Washington Seattle. Ironically as I was doing this the phone rang. It was the UCSF oncologist's assistant calling to see if I had made sure the files from Dominican were being sent to Seattle. I kindly informed her that the folks at Seattle had already made the request and were on top of things.

We will know in the coming weeks what the new geometry of Tad's care will look like. I will share it here. In the meantime we're grateful for life and the abundant love that surrounds us every moment.

(While doing a 12 hour run to San Francisco last week to pick up mail and clean underwear as well as run various errands I bumped into a nurse practitioner buddy who's worked with people with AIDS for years. He countered with the common idea that this distancing is a "necessary protection" for healthcare professionals - a notion I refute. I believe we can keep our hearts open even in the face of life's harshest reality - that we all die. This would merit a longer discussion with friends over tea.)

pain, sorrow, love and joy

2011-04-18T23:25:00.000-07:00

Slow-acting chemotherapy has a good side and a bad side: it's slow-acting and it's slow-acting.

When Tad was getting heavy chemotherapy in the hospital he received several substances over five to 7 days then went into what became a familiar series of painful symptoms: loss of immunity, shivers, fevers, peeling skin on hands and feet, sores throughout the GI system (particularly entry and exit points), fatigue, weakness, nausea. When that was all over his immune system would bounce back, he would go home and proceed to lose all his hair.

All of it.

With his present regimen he has been having many of these same symptoms, generally at lower intensity, but sporadically over a period of five months - with a full head of hair.

In all, the assault is less severe in intensity but it is long, painful and relentless. The impact on the morale is at times unbearable.

In times of great discomfort Tad wonders aloud how long he can keep doing this; if it's possible to live like this much longer.

My fearful thoughts of him dying in the middle of the night have reappeared: I awaken, look over at him, look for breathing, see none and wait for it to start again. In those seconds --or perhaps milliseconds-- my mind races. No - my mind is electricity: shooting scenarios through my brain. Then he breathes and I go back to sleep.

The pain, drowsiness from pain meds, diarrhea, aches, nausea, lack of appetite are all causing visible changes to his body: tension in his muscles, hunching, weight loss, low energy.

At times I want to run away - to go outside and scream at the moon.

The other truth - one that I cannot omit - is that we have MANY beautiful moments.

I don't just spend time wondering how the cat will adapt to living at my house once Tad dies - I also spend lots of time cuddling her between him and me on the sofa or the bed. She keeps us smiling with her antics and has us wondering what the hell could possibly be going through her feline brain.

The gorgeous flowers in his yard aren't just a source of psychotherapy for me, a way to step outdoors, put my hands in the earth and no longer wince every time I hear Tad moan in pain. They are also a great distraction we use astutely to steer our conversations away from illness and death. We wander among them almost daily commenting on the progress of this dahlia sprout or that hoya vine, the necessity --or not-- to repot the camelia and the relentless pests on the new fragrant yellow roses.
Movies and TV aren't just a good sedentary activity for someone with low energy - they also help us tap into our humanity, help us feel the tears that we tend to keep at bay due to the constant work of staying ahead of symptoms.

A recent episode of Grey's Anatomy had me suddenly sobbing when one of the docs stood by and watched her beloved being carted in after a car accident. Somehow the hokey fact that she had broken into song brought out no snarky comments or critical thoughts but instead had me tapping into something deep and sorrowful that needed letting go. In these moments we connect deeply, Tad holds me in my sorrow, caressing my hair and calling me "Greggy". We fill the wordless moments with deep love.

Not surprisingly - shows with gratuitous violence and physical assaults have gone from being entertaining to unbearable.

The over-priced blender for which I once developed a healthy resentment seeing it as a waste of money and one more unnecessary gadget - has now become my favorite way to invent crazy smoothies as a means of slipping Tad protein powder, fresh fruit and fatty liquids - in a way that will trick his stomach into appetite instead of making it recoil with nausea.

Sunday evening I sat in a "heart circle" around a fire at the full moon - a very Californian ritual where we deeply listen and deeply share with peers. I spoke of my childhood, saying that my greatest gifts have emerged from my deepest wounds; they are like two sides of the same coin.

As I cross what is no doubt the most difficult period of my life - I am daily aware of the many gifts that come with it.

PS We will be going to the Seattle Cancer Care Alliance (aka Leukemia Central) toward the end of May - about one month after round five of the slow-acting chemo he's presently taking.

Did you feel the earth move?

2011-04-02T16:05:00.000-07:00

Or was it just me?

In the last ten days I have seen the power of what happens when I say "enough is enough". I've seen first-hand the power of reaching out to others and saying "We can't do this anymore."

Solutions came flooding in from both friends and professionals.

I'll start with friends: meals cooked with love, hand-delivered checks, beautiful get well cards, gift certificates to local spas, offers for free massage came from all directions!

Thank you Richard, Walter, Kaleo, David, Sunny, Xavier, Tony, Cathy, Lin, John and many others I can't remember.

Though we are unsure of how big of a slush fund we will need to get Tad to Seattle and pay rent there for a few months - we have already accumulated about $1600 thanks to gifts from loving friends! You can't imagine how much lighter I feel.

It feels like the first time in my life I have without any trace of shame or hesitation asked for and received money from others with simplicity and gratitude. I know some people can afford to give and others can't. It feels so good to just let it flow simply.

So if you can afford it - please send a check. If something happens that we don't need it - I will send the money back.

As for the professionals: the list of good deeds is long.

My RN friend Natasha and my hospice MD buddy BJ along with Tad's local GP all tirelessly helped us find a pain regimen that mostly got him out of pain.

The downside however was it got him into a state of complete dependency due to drowsiness, confusion, forgetfulness and mood swings. This caused a lot of distress in both Tad's life and mine. We actually had an appointment with a hospice team in the hopes of getting better pain management locally - but instead they wanted to set up hospice procedures.

Thank god BJ Miller (from my connection to Zen Hospice) recommended we connect with the Symptom Management team where he also works at UCSF. I wept after about three minutes with this new doc as it became very clear we were in the right place. He offered us concrete advice and tweaked the pain regimen. Within 48 hours Tad was both pain free and not loopy (or aggressive or disoriented or euphoric).

A woman called Donna at the Seattle Cancer Care Alliance whom I had contacted took it on herself to make Tad one of her personal missions. She performed the miracle of getting UCSF to send a copy of Tad's chart within days. (Natasha will tell you that just getting a chart from one side of Parnassus Ave to the other can take months!!!). Donna got one of their top leukemia specialists to take a look. His feeling is that the present therapy is good but that if it doesn't work he has two other therapies that may also do the trick. He's planning on seeing us for an initial consultation sometime in the next month.

And one last detail: Donna also informed me that as of January 1, 2011 certain clinical trials are fully covered by Tad's primary insurance without any out-of-pocket costs.

Diane, the tireless advocate-mom of a leukemic 24 year old girl who has become my AT&T lifeline, helped me get in touch with a doc at Johns-Hopkins in Baltimore. He informed me that the pain Tad is experiencing is not end-stage leukemia but simply a nasty unavoidable side effect observed in 1 of out 6 leukemia patients using Nexavar experimentally.

In the face of all this earth-shaking movement Tad has gone from being bent over in pain with no appetite or energy, with an appearance of what his oncologist thought of as "hospice" to being first loopy and in far less pain to now being almost never confused and out of pain 80% of the time.

Finally the UCSF oncologist --clearly prodded into movement by my "what next?" email, the other doctors' sticking their noses in and Tad's improved state-- has suddenly stepped back into the game.

I had written him a rather pointed email (my first to him) asking him to take a position on Tad's state. While Tad was in SF getting blood I got an unexpected call at home telling me he wanted to talk to me about my email. I agreed and the nurse cautioned: "But you better get up here fast because he might leave any minute."

He actually arrived at the appointment relatively on time and started using the future tense of the verb again. He did his usual inching away from us as the conversation went on but less so than before - with less discomfort. He agreed to communicate with the hospital in Seattle where Tad must go to get his stem-cell transplant. Though I still plan on keeping him under pressure via the valiant Donna.

I asked about the Seattle doc's proposal of two more possible medicines if this one doesn't work and almost choked when he went into Old Boy mode sharing that he and his colleague were "old friends" and "actually flew to a conference in Germany together just last week." Instead of choking however I assured him of my deep conviction that he is part of a handful of top leukemia experts and I have no doubt they will work together to get Tad to remission.

So there you have it - Tad's situation is still a mystery. No doc has any documented evidence of what his two meds do when combined. His future may still be quite short but there is some real hope, hope I've been desperately needing for some time.

Thank you all for being part of this journey.

our tsunami (though it feels more like Libya)

2011-03-13T18:34:00.000-07:00

Our latest update is below but first the part I never expected I need to write: we need help.

So here goes:

Dear family, friends, people who love us,

We could use your support.
- We could use some more get well cards.
- Phone calls are a bit too much right now but a simple voice mail on Tad's phone telling him how much you love him would be wonderful.
- Home delivered meals once in a while to give me a break would be so appreciated: http://www.dinewise.com/, or a local place http://www.freshprepkitchens.com/menus.php?page=menus
- Gift certificates at our local spa for myself would be such a welcome gift:
http://www.wellwithinspa.com/gift_certificates_index.html
http://www.teahousespa.com/about.htm - I am exhausted.
- We could use a small slush fund. We mostly have money to cover everything. Tad's insurance is really good - but there are definitely more expenses now than before. For my friends with some extra cash, can you send a check?
- If we get through the next phase - we will need to spend a lot of time in Seattle -- we'll need miles if you've got them. But til then - we'll take this one day at a time.

When Tad was first diagnosed people by the dozens insisted, "If ever you need anything please ask." To be honest I never knew what to ask for til now.

The most moving times for us are when people reach out and express love and support.
Thank you from the bottom of our hearts.
Greg

Now a (crazy) update

Tad is presently taking two medications: these are slow-acting chemotherapy drugs designed to stop the leukemia that couldn't be taken down by the usual, intensive, in-patient chemos he received last year.

Decitabine was first used against this kind of leukemia and showed results in early 2009 - Nexavar was found to be effective against his form of leukemia in June of 2010.

He was diagnosed April 9, 2010.

So in essence he is being kept alive and possibly being cured by two meds that weren't really being used for this disease just three years ago.

Such is the nature of inventions - suddenly something that wasn't there appears and changes everything. Our human brains take time to adapt to and make room for new realities.

Two days ago I spoke to our local doctor's team here in Santa Cruz because I needed some support on pain management for Tad. Before getting back to me they decided to call his cancer team in San Francisco to get more information on his health.

They called me back dumbfounded. The oncology nurse told them the EXACT opposite of what they're telling us: the medicine he's taking is not making him better and the symptoms he is experiencing which we believed to be caused by the chemotherapy are in fact caused by leukemia. Though the meds are hopeful he doesn't have much time to live.

Just last week when we sat in her boss's (the oncologist's) office he told us that for the first time in a very long time there was no visible leukemia in Tad's circulating blood - a very promising sign that the combination is working.

After a long night with no sleep, a "tsunami" on its way to Santa Cruz, several phone calls and some serious back-peddling from the nurse I came to the following conclusions:

- the situation is indeed dire - he could die at any moment
- we are using a last-ditch effort medication combination that may work and may not and with which UCSF is not comfortable at all (there seems to be no documented evidence of this combination even if each of the two meds has shown excellent and unexpected results).
- Tad is at high risk for anything that creeps and crawls
- the oncologists talk up the good points when they converse with us
- they talk up the scary disaster potentials when they converse with other professionals
- they work in a fear-based, litigious culture in which it is customary to share the bare minimum with patients and family
- thus when they shared the disaster scenario with another professional (who happens to adore Tad and has cared for him for years) they couldn't possibly imagine that it would be shared with us.

I once interviewed a medical historian for a radio show I was producing at the time. He told of how in 1982 a doctor from the illustrious Mayo Clinic called the Centers for Disease Control and said he had a patient who had all the symptoms of HIV. The only problem was the patient was a heterosexual female. The doctors at the CDC's told him: "That's impossible. Heterosexual women can't be infected by HIV".

Scientists live in an evidence-based world. They are taught to not have hunches. In order to survive their they must have two strong streaks: a) detail-oriented to the point of being obsessive-compulsive b) self-confidence to the point of being narcissistic.

As a man who listens to intuition and hunches a lot, I can almost date the moment when they lost hope and began to pull back.

As a man who was told for years I was going to die and then one day a drug came along and saved me, I am able to hold hope. We can guess at the future with lots of certainty but she can always surprise us.

Today it seems our difficulty lies in being cared for by people with very little imagination and thus not much hope.

Tad is in a lot of pain, has lost weight, is exhausted, has torrential fevers each night and yet is still smiling, joking, keeping up on certain TV shows and on the various plants poking their heads out of the ground in the yard.

As the sweet nurse at the local hospital said to him this week with tears in her eyes: "It's so easy to love you because your eyes of full of love."

I am down in Santa Cruz nearly full-time now slowly building a community and a cluster of wonderful regular rituals for myself: weekly walks on Seabright Beach with Ron, short walks to Peet's for coffee, bike rides to West Cliff to watch the surfers, meditation at the nearby Zen center.

I continue to prepare for my board exams though less ardently. It's been difficult to focus of late.

This week or next Tad will be getting the fourth round of Decitabine - this is the round at which it attains its full effect since it was designed to be used on elders with this form of leukemia who are too frail to get big guns chemo. We're hoping it will continue to suppress the leukemia and his immune system will grow back.

If it doesn't we're told there really aren't many options left.

And the beat goes on...

2011-02-12T19:06:00.000-08:00

Tad is in the kitchen doing the dishes. Dinner came after a leisurely afternoon with the two of us working in the garden - with him being careful to avoid putting his hands in dirt and to wash them well once he got in the house. After the dishes he plans on watering the orchids.

This burst of energy comes a little more than a month after the oncologist began introducing end of life language into our discussion and wondered aloud if Tad were "up for more treatment" or "ready to stop".

The medicine that appears to be doing the trick arrived after Tad did the footwork from his hospital bed to get it delivered -- footwork that, in my opinion, some healthcare provider should have done for him.

The result has been far fewer drives to the hospital to get blood parts (probably cut down by 300%), less fatigue, better lab results, less risk of exposure to any icky things on the planet and a general feeling of hope.

The downside has been ongoing, deep bone pains (the battle between leukemia and chemo plays out in bone marrow) which at times set off terrible, debilitating muscle spasms.

Chiropractics don't seem to work. The main remedy -on top of the mandatory but not-so-effective muscle relaxers and pain meds -- is lying down, breathing deep, applying heat and waiting for it to pass. This not always convenient when you're trying to increase the level of normalcy in your life. The pain spasms set off a downward spiral of discouragement, loss of appetite, and general disconnection from the world.

If anyone knows any good remedies - please advise. We're hoping to try acupuncture.

So here are the latest words of wisdom from the Oncologist/Oracle as of this last week:

1 - "You're sort of on your own with this new med - it's experimental and we don't have any data on this."

2 - "You have three options: the new med alone, the new med with half the old med and the new med with all the old med. Which do you prefer?"

3- Once Tad made his choice he replied: "That's probably the best solution".

4 - As he stood up to leave he said: "You're really tough" (the closest we've had to a pep talk from him in a good long time).

He also agreed - at our behest- to send a letter to Seattle to tell them to prepare for a bone marrow transplant. We hope to go up there for a consultation soon.

Yesterday we went to our vegetable plot to see how badly the weeds had taken over and to allow me to mentally prepare myself for the next Big Domestic Task. When we arrived we found not only that it had been weeded but that most of it had been tilled and one third of it planted in winter plants: broccoli, onions, kale.

I gently wept with a big dumb smile on my face, knowing which neighbors had kindly stepped in to offer us this gift.

As I go through this process next to my beautiful man I am less and less a believer in god. It seems quite clear to me that getting sick and dying is just one of the many things these bodies do. And when these bodies stop working, there will be nothing left.

Conversely what is also becoming more and more clear is that I experience an incredible mix of joy and tears when I see loving gestures around me, when kindness appears out of nowhere, when gentle support is offered.

And to me that is Godly.

Sink or swim...

2011-01-27T08:37:00.000-08:00

Last week Tad developed a G.I. problem and we had to have an appointment with the big Kahuna at UCSF. For the first time -- and in a fashion that appeared to be coming out of left field -- he began to introduce end-of-life language.

This seemed incoherent because he was telling us that the slow-acting chemo is actually doing its job of keeping the level of leukemia in check and quite low (around 7%) in his peripheral blood. Also in the same conversation he talked about the promising outcomes of Nexavar (the other name for the afore-mentioned Sorafenib) - a new med we are trying to get our hands on which was discovered to be effective against this particular form of leukemia just last year.

Not surprisingly Tad and I walked away from this conversation with different conclusions and after a few days finally called the hospital to get clarifications.

In a word here is the scoop:

- he is basically living with next to no immune system and could get a life-threatening infection at any time
- the leukemia could mutate at any time causing the chemo to become ineffective very rapidly
- he could start bleeding at any time and not be able to stop.

In essence - the second-to-last ditch med (Decitabine) is doing its job but it needs four to five months for its full effect. And the last-ditch med (Nexavar) is our last hope but hasn't been started and WILL have side effects.

Of course Walgreens has been pussy-footing around with the Nexavar script for over 10 days. When we finally took things into our own hands we discovered that in fact the manufacturer will only work with one pharmacy and it is not Walgreens. (You'd think Walgreens would have noticed this instead of just saying "It should be here any day now".) So yesterday, while getting a blood transfusion in our local hospital Tad called both entities and began to fix a corporate misunderstanding that has gone on for nearly two weeks.

The original script was actually written in November. It went through two insurance refusals first.

(This is just another of a string of mis-communications and mishaps we have had to manage in this piecemeal healthcare system that Congresswoman Bachmann just called "the best in the world" in her response-speech to the State of the Union address. Clearly she doesn't get out much. I can only imagine how complicated it gets for peoople without health insurance.)

I have just resigned from my two biggest volunteer stints and am living in Santa Cruz nearly full time - while still preparing for licensing exam number 2.

More than ever I am aware of my difficulties asking for help - or more precisely identifying what or how to delegate to others.

Lately Tad has been confused and in a lot of pain - the meds he takes for the pain make him a bit loopy and out of sorts at times. For the first time this week he was not able to drive himself to the hospital for his every-other-day intake of fresh blood. It appears to have been due to a medication mistake.

He and I have begun talking about having reminders and possibly people around him to help out - a notion he is not comfortable with. We've also begun our own painful discussion about what to do with his belongings and his ashes. Last night I cried myself to sleep.

Here are two of my favorite astrology columns for Tad this week:

1) "Are you concerned about finances, reviewing cash flow, considering consulting an advisor for help with taxes, assets, resources? Do not remain silent. Have at least one person you can speak with. Also, it’s time to consider end-of-life (you are not dying) preparations, so those who remain here on Earth know what to do. What do you want done after you die? This includes resources."

2) ""Turning toward the storm cloud, I lost sight of the bird." Let this haiku-like poem by Julius Lester serve as a cautionary tale, Cancer. You're at risk of getting so fearfully fixated on a storm cloud that you may lose track, metaphorically speaking, of a rare and beautiful bird. And the thing is, the storm cloud isn't even harboring that big a ruckus. It will pour out its flash and dazzle quickly, leaving virtually no havoc in its wake. That's why it would be a shame for you to let your perverse fascination with it cause you to get separated from a potential source of inspiration."

New Year - New Molecules

2011-01-07T10:56:00.000-08:00

It's been over two months since I've shared with family and friends our latest Adventures in Life with Cancer.

As of today life is pretty calm...though that hasn't been the case since my last post early November.

After our great vacation in Arizona and the day before we were scheduled to go to Seattle for a consultation - the doctor conducted a biopsy on Tad's bone marrow that showed cancerous cells, thus rendering him inelegible for the trial transplantation in Seattle. This also meant a lot of running around undoing all the running around I had done to organize this trip (even got Alaska Air to donate his plane ticket!!).

What this really meant was unclear to us. We had been told that if we wait long enough after remission that the cancerous cells would return so this didn't seem to be a big issue (it had been about six weeks). But apparently based on all the nasty chemicals with which they had bombarded his body, this Return of the White-Blood Cell Eaters was too early and not a good sign.

The doctors have put him on two new meds for which his cancer is naive (don't you love this medical jargon?!) and which, joy of joys, are slow-acting and can therefore be done at home pretty much.

So we've stepped off of the really nasty roller coaster of very high hills (a month of hospitalization with no immune system while being vulnerable to any kind of bug spiced up with loss of hair, a pinch of diarrhea and mouth sores) followed by a month of home rest, rinse, repeat to a more gentle roller coaster (mouth sores, night sweats, achy flu-like symptoms mixed in with symptomless periods).

We've gone from an E ride to perhaps a C ride.

This time around the more exhilarating moments have been caused by the hospitals infuriatingly difficult rapport with outpatient treatment for something this complicated. Though they swear up and down that this new protocol which consists of five days of one-hour IV's is "not rocket science" (their words not mine) and is easily done locally in Santa Cruz, their incapacity to coordinate with entities other than themselves is outstanding.

(When I finally got in touch with docs at Seattle to get him up there for the protocol they said to me: "We don't understand - it's taken eight phone calls with UCSF to get nowhere.")

Three days before our first appointment with a Santa Cruz oncologist for some simple blood draws and possible transfusions I called UCSF outpatient clinic just to let them know I was following the plan and wanting to keep them in the loop. An hour later I received a phone call from his nurse's boss insisting I get him up to San Francisco as soon as possible, swearing that he was at death's door and that he needed to be hospitalized immediately - successfully scaring the hell out of me. When I shared this info with Tad he simply said: "I'm staying here for Christmas and will be going to see the local oncologist as planned."

To be honest I guess that was more like an A Ride hill.

While I'm on a rant I feel the need to get a very painful incident off my chest; I've been gnawing at this for weeks.

After the Seattle disappointment Tad returned to UCSF for chemo through a process of calling in each morning to see if there is a bed available and whether today is the day we call in a sitter for the cat, stop everything for a month, tell the neighbors to start watering, throw the bags in the car and go to SF or not. After five days of this they finally found us a bed, we arrived and they put the long plastic tube in his arm that goes over to his heart (a PICC line). Then a "fellow", a sort of visiting doc, came in to announce the new chemo plan. The problem is he started off by saying, "Now I don't have all the details but we're shifting you to a new treatment that you can do outpatient."

By the time I showed up Tad was in a panic wondering what the hell was going on. A new doc arrived with the fellow (clearly feeling like he flubbed) --yet another face we'd never seen before-- and when I expressed exasperation at the whole implementation the first thing she found to say to me was "You mean Dr So and so." Apparently during my rant I called her and her colleagues Mr and Mrs - a strategy I use in order to stay polite when I am really angry.

Now one might think that a successful senior oncologist teaching at one of the best medical schools in the Western Hemisphere would have enough self-assurance to be able to see through a patient's family member's anger and discern that underneath is sheer terror and that possibly beneath that is immeasurable sorrow at the idea of losing the person they love so dearly.

One might think that this doctor would consider reaching out and putting a hand on said family member's shoulder, making eye contact, conjuring up a smile and saying "I'm sorry for the mix up - let's talk about finding solutions here."

One might think that this person with decades of training and experience, who is not ill and who is in fact paid dearly to be there had enough personal solidity to be able to hold the anxiety in the room in some form of compassionate way.

Instead she chose to correct my grammar and remind me of their proper title.

There...I'm done.

This week has been very sweet. Tad stays at my place in San Francisco, drives or takes a taxi to UCSF, gets chemo and blood, then comes home for a gentle evening in, watching movies and such.

In the midst of all this craziness Tad has had some seriously ill moments. One of the decisions he's made is that he prefers to get the autologous transplant here in San Francisco rather than trying to go for the more complicated donor-transplant in Seattle. As a reminder: the autologous consists in receiving one's own stem cells which got harvested during a period of remission. This has been known to create a cancer-free life for folks without the painful sickness known as Graft versus Host Disease, a complex syndrome in which your newly implanted immune system basically screams bloody murder and starts attacking the new house it doesn't recognize as its own.

Another piece of great news is that Tad's insurance company, after some serious medical nudging, have agreed to pay for a drug that has been recently shown to have some really good outcomes for leukemia. Sorafenib, a simple pill has only shown some anecdotal evidence of working well with leukemia patients but these anecdotes are pretty promising - so his docs have decided to give it a try. Upon appeal his drug insurance agreed to go for it as well - a promising outcome. In my opinion - based on what the doctors have told me- the insurers wouldn't pay if the evidence weren't compelling.

Truth be told the word "transplant" hasn't been mentioned a lot lately by medical staff, leading me to wonder whether we are still on a curative path or simply on a more "maintenance" path ie helping him live with leukemia for as long as possible while keeping it weak with nasty-ass drugs. I don't know if this is my fear speaking or if it's based on what I'm picking up. And I'm not sure if his providers know either.

What is clear to me is that we thought this would be more like an 800 meter sprint: get chemo, get in remission, get transplant, get back to life. The truth is it is much more like a VERY long marathon with pit stops for food and water but with long periods of pushing hard and painfully. I am slowly realizing that by getting back to my own life I am not betraying him (I passed my first round of psychology board exams early December and planning for round two early February). We are learning that it's healthy for us to spend time apart each week, to reach out more to friends for practical support, to sit with our fears and not always act on them.

Please know that your cards, phone calls, casseroles, offers to go for walks and hugs are ALWAYS welcome and quite clearly part of what keep us going every day.

Tad and I both went and got haircuts yesterday - his first in over 10 months. Here is a photo we took of ourselves.

From Tucson to Seattle

2010-11-02T13:04:00.000-07:00

One of the up sides of having ADD is my capacity to scan for and process lots of information. When I drive I tend to have my eye two or three steps ahead of my car. The down side of course is that I can be an impatient driver and riding with me can be pretty annoying. The best way I've found to slow down my mind is to stop and regularly meditate - but that's not easy when I'm buzzing past huge rigs at 75 MPH.

For nine days in mid-October Tad and I drove nearly 2000 miles to visit family and friends, to take in the beauty of the autumnal desert and to simply get away for a much needed vacation in Southern California and Arizona. The hidden goal that gave birth to the trip however was for him to say good-bye to members of his family of origin for perhaps the last time.

If all goes well the next few months will present Tad with a bone-marrow transplant (more realistically called a stem cell transplant) which may or may not rid him of cancer and may also kill him by replacing his immune system with someone else's. It's the most promising procedure for a long-term cure and the most fatal due to the many possible complications; the ultimate eye of the needle.

As we put more and more miles between us and the Bay Area I watched Tad and myself loosen up, laugh more, become curious about things around us. I watched us release the cumulative fears and obsessions we'd been building up around this phase of his treatment. I observed us as we temporarily let fade from our awareness the crazy-making fact that the ONE hospital offering the most promising clinical trial doesn't like Tad's insurance - or to be more specific doesn't like Tad's secondary insurance - the part that covers the 20% his other insurance doesn't cover.

Unlike many of my friends Tad is not without insurance; he actually has three different kinds of coverage! But after telling us they simply needed to speak to the insurer, the folks from the Seattle Cancer Center have now announced that they do not bill that insurer, or rather that they once did but they had bad luck so they'd rather not for the moment - the perfect response to make any level-headed person go bonkers.

In my attempt to make this road trip as relaxing as possible I decided to resist the insistent pull of my mind toward what was happening 300 yards ahead of our car and devised strategies on how I might possibly get around it. I decided to stop wondering why the person driving the light blue Chevrolet with Nevada license plates thinks it's okay to set up residency in the left lane and drive ten miles under the speed limit, keeping gentle pace with an 18 wheeler full of chickens. I know that if I focus on these things long enough my mind gets jittery, I feel some kind of mis-placed rage and I ultimately stop enjoying the beauty of the landscape, the music from the Ipod and the pleasure of driving in the open desert with my beloved.

The strategy I used for myself was taking a deep breath and simply repeating in my mind: "Just this". Not the baby blue chevy, not the 18-wheeler, not the question of whether we will get through LA before the bewitching rush hour deadline of 2:30 PM but...
just this...
just this....
just this.

It reminded me of a time when I was attending a silent retreat in Northern Quebec with American Indians. I actually fasted for ten days, and remained silent for four of those ten days while participating in various native American rituals. One day I took off for a long hike in silence and discovered a gurgling mountain river. I walked along side it and became so fascinated by it that I lost the path home through the thick woods. But I knew that if I just followed the river downstream it would take me back to a road that would take me back to my camp. Standing on one of the giant boulders looking downstream my heart dropped since I could see no possible road map. Much to my chagrin the rocks were not scattered in a terribly organized fashion! Yet I had no choice.

What I discovered was that all I had to do was focus on getting to the next rock and once I got to there, the next one seemed obvious. One rock at a time I made way back home. That rock-jumping experience was one of the big take-aways from my tree-huggers, touchy-feely retreat: take life one stone at a time and don't get too obsessed about the big picture.

Just this.

I don't know what the outcome of our present medico-insurance dilemma will be. I don't know if we'll get into the study in Seattle (we have an appointment on Friday to discuss it) or if we'll remain in San Francisco and get the less promising (but less fatal) autologous transplant in which the doctors will give Tad some of his own previously extracted immune stem cells.

When people or greeting cards tell me to "simply trust" - I admit that my first thought is "trust what?" or rather "Trust WHAT!?!?!?"

I can't really find the way to trust some benevolent god or angels or universal flow.

But what is clear to me is that I CAN trust "just this". I can trust that each day I have what it takes and Tad has what it takes to stay connected and remain hopeful for that day.

Not surprisingly our friends and family weren't really eager to say the ultimate good-bye to Tad, nor were we, truth be told. Instead of being a trip about sorrow it was a simple road trip about life, about saguaro cacti and giant orange boulders, about hummingbirds and mediocre novels, popcorn in front of the TV with family, barbecue ribs and apple orchard forays, chatting with friends and enjoying the journey.

It was a trip about just this.

[EPILOGUE: Since first posting this Tad had a bone marrow biopsy - a lovely procedure in which they bore a hole in his hip bone to take out a sample. It indicated some cancer activity in the blood meaning it's best that he get more chemo before getting a transplant. We called Seattle to see if we should come or stay and they recommended we come up after this next round of chemo. By then they will have had time to find a donor match as well. Deeeeeep breath....]

last night's dream

2010-09-03T06:56:00.000-07:00

(Note: I wrote this blog early into Tad's chemo on Sept 3. His hospital stay is almost over and it was a rough ride. An infection migrated to his kidneys and liver around day 10 rendering him weak, confused, aggressive and -fortunately- mostly amnesic. He is better now. I discovered in that period that when my fear gets the biggest - I stop communicating with the outside world. Good to know for the future...)

Last night I had a lengthy dream about a former lover of mine and myself. We were involved in a complex adventure to get out of a country. Our escape plan included border patrol, trains, walls to climb and buildings to skirt. Our plan was genius and --it was quite clear to me-- would get us around and beyond all these obstacles. But in the end for reasons I couldn't grasp he decided to stay on the train just as we were supposed to hop off. He knew he was sick and that our escape plan would exact too much of a toll on his body. I wept as the train rolled away.

But shortly after hopping off, I suddenly found myself back in my home country in a fancy restaurant trying to explain my sorrow to acquaintances who just didn't understand.

Tad is back in the hospital for round three of chemotherapy - politely called "consolidation".

This is a good thing we're told: round two managed to put him into remission and consolidation will prepare him for the grand slam, a bone marrow transplant. The not so good new is we're also told that given Tad's particular make-up this final and necessary round can only be conducted in Seattle, Washington. For those unlucky souls who have yet to discover the beauty of the Pacific Coast, Seattle is about 15 hours by car from San Francisco.

Thus yesterday we found ourselves calling there to find out about housing, length of stay, prices, to try to understand what is covered by Tad's insurance and more importantly what is not. My mind began wandering as some sweet woman explained to me how certain insurances crossed state lines and others didn't. Within a short time my head was spinning with uncertainty. It's not impossible by any means but it may mean an expensive stay, for at least two months, away from our community, in a city we don't know. It's not clear to me how much I'll be able to stay there while Tad is undergoing all of this and how much I'll need to be in San Francisco.

Tad once told me (wisely) that it's important to look at the past, but just as important not to stare. As we cross this strange leukemia desert together I see that the idiom holds true for the future as well. It's important to look ahead and see the goal in the distance but it's equally important to come back quickly to the present, to our feet in the sand, the breeze on our skin, to one foot in front of the other.

What my dream reminded me of, a notion I like to leave out of my everyday thinking, is the painful idea that we may not get to our destination together. Cancer has already separated us in a way; he has it in his body, I have it in my heart. Occasionally this reality leaves us with a gulf of misunderstanding at times hard to overcome.

Then we have moments like the one we had two nights ago in which I put his hospital bed up high, turned down the lights, pulled the curtain to block out glances from passersby, put on Brian Eno's Airport Music and gave him a delicious massage to try to ease the throbbing headaches he's been experiencing this time around. Afterward we sat holding hands, watching a brilliant Swedish thriller that had me gasping like a school girl. In those moments we remember that we are still side by side in this journey, just living it from different angles.

In the final scene of last night's dream I get up from the table to go the bathroom only to discover that the toilet is in the middle of a vast, bustling, 19th century dining room full of elegant diners, all of whom can see me doing my business.
A lovely metaphor.
Here I sit with those normally-not-seen parts of my life in full view: at times I cry on the subway or while shopping for my weekly groceries. The good news is I no longer hear those old playground voices: "Boys don't cry", "Be strong", "What will people think?" I just sit and do my business.

It's just life folks. Go back to your meals.

words

2010-07-15T11:03:00.000-07:00

My motto lately has been "More silence, fewer words". I've actually stopped my own psychotherapy and begun working with a meditation coach. I see now that this has also impacted my blog.

The last three weeks have been mostly about sitting uncomfortably with Tad's immune system at Zero - the goal of chemo for leukemia. Then waiting for it to rebuild itself.

The first phase lasted a good 12 days, the second took about 3!

During these times of waiting it is very tempting to fill the wait with all kinds of words/thoughts/scenarios. I have found that the very best way for me to go through this is one day at a time allowing myself to only have thoughts and feelings about what is actually in front of me and not my scary fantasies.

Last night, quite unpleasantly, the staff sent us hiking. We no longer qualified for the more specialized-care bed of a chemo patient and were sent to the lower realms of the liver-transplant folks which was so calm it looks like it's about to go out of business. Tad has actually been on the 14th floor of a unit which has its HQ on the 11th floor but because they don't have enough beds they borrow 10 rooms from the 11th floor.

The highlight of the 30 days in hospital was a few hours of birthday party in the "Solarium" (think big corner office with lots of windows and ugly furniture) which we managed to turn into something almost warm and welcoming. Tad got special permission to get off the ward as long as he wore a face mask between the two worlds. Sweet friends came with cards, gifts and hugs.

The other highlight was actually a darker moment. Around day 10 we discovered that contrary to what we had been told, this was not round 2 of 3 but instead round 2 of 4. It seems that the misunderstanding stems from the previous doctor's declaration of remission being a bit premature. Apparently further data came back indicating that Tad's cancer wasn't entirely in remission. Thus this last round of chemo wass intended to eradicate it as much as possible - the absolute prerequisite before doing the "transplant" that will hopefully keep him cancer-free.

This "transplant" consists in giving Tad an immune stimulant in order to build up his immune system into a mega-immune system. At that point they will put him on a sort of dialysis machine and extract his life-giving stem cells from his blood. These will be frozen then re-injected into his body after Round 4 of chemo. They are the seedlings that are meant to keep him cancer free.

In essence the procedure has two basic principles: 1 - eradicate all immune system good and bad several times and let the good rebuild itself hopefully without the bad and 2 - give the good cells an extra boost by fertilizing them with your own previously produced good stuff.

We will know in about 2 weeks if Tad has achieved remission - this will be based on the results of a bone marrow biopsy to be conducted in 10-14 days. If he doesn't hit remission the doctors will elaborate a second strategy.

In the meantime we return to the slow sweet life of Santa Cruz: kitty, gardens, neighbors, friends, walks along the ocean, breakfasts in Seabright.

This stay will also include the highly-anticipated visit of my 13 year old godson and his parents from Bordeaux. He's looking forward to hanging out with Tad and me (and riding the rides at the Boardwalk!)

life at UCSF

2010-06-25T09:54:00.000-07:00

It's a good thing when one doesn't have much to report about living with cancer.
A really good thing.

Life in captivity at UCSF has proven to be much better than at CPMC our previous hospital.

Staff are just as competent (as far as we non-cancer specialists can tell) but they are also more multi-dimensioned, more human. They share with us little bits about themselves and are willing to have real conversations that go beyond white blood cell chat and platelet babble.

Karen showed us her tattoos, Angie told us about her house in Hawaii and the incredible hibiscus she found, Ramella told us how she misses the East Coast summer evenings.

They also have one more level of care that was lacking at the previous hospital. In essence Tad's care was in the hand of a brilliant CEO who appeared for five minutes at the end of every day and pulled all the strings in his absence. He was prompt, business-like, cordial but not warm. During the day the only non-nursing person we saw were interns who seemed to be precocious 16 year olds who regularly replied "I don't know, I'll check with Dr Baron."

At UCSF we never see our CEO and we never see the interns but we have an "attending" physician who's a grown up, proper oncologist who visits twice a day and is in contact with said CEO. He too is a clearly a geek and it pains me to see what a hard time he has making eye contact while conversing with us but he's willing to sit, to talk, to answer tough questions. Once he even revealed a bit about himself and his family.

Just as frequently we see Nurse Practitioners who also know a lot about the medicine and can have the all-important power to prescribe. They are a funny lot but the recipe seems quite simple: picture a physician, take away all the narcissism and add a heart. Voila.

Another subtle difference but an important one is the way we are recognized as a couple. The previous hospital was by no means uncomfortable with us being gay but it was simply tolerated. Here staff purposefully support us, openly express care for us as a family, regularly inquire about us as a loving unit worthy of respect and, dare I say, celebration.

To add a cherry to the cake we know several people who work at UCSF so it's quite sweet to have old friends pop in and say hello, lie down on the beds with us and watch some TV or bring us yummy stuff from the cafe.

The next few days will be the hardest. Tad's immune system is slowly disappearing because of the chemo. The last, most aggressive LEJ was given to him on Tuesday. LEJ is Tad's name for it: Leukemia Eradication Juice (I came up with Leukemia Obliteration and Vivacity Enhancing Tonic ie L.O.V.E. Tonic but Tad thought that was way too touchy-feely). On that day a nurse had to be present all day in case his vitals plummeted from the toxicity of the Juice. For the first time we saw them bring in a bottle using ALL the precautions (mask, gown, double gloves!). The worst thing he experienced was a throbbing headache.

What is clear to us now is that when Tad arrived for Round One, unbenownst to us, his immune system was already shot through with leukemia. His whole experience of chemo was far more complicated by multiple symptoms, none of which has reared its ugly head this time around. He will no doubt hit the low point in about three days (this is called the Nadir which makes me smile and think of Ralph every time I hear it).

As I write this I wonder how much his physical state coupled with our emotional states might have had an effect on these professional relationships. Perhaps the first team, like us, was far more concerned about Tad's death and simply didn't want to get too personal. Today when people walk into his room they find the two of us mostly relaxed, openly loving, reading, writing, watching TV, giggling, usually only crying when cards and other expressions of love arrive. The specter of his death seems to have taken a step or two back and we're all breathing a little more freely for it.

Same-same but different

2010-06-18T07:32:00.001-07:00

It’s been four days since Tad and I stepped back into a hospital again – this time for Round Two of three month-long chemo sessions.

Many things are familiar: a button to push when you need help, a functional box where no matter what you do the furniture never quite flows, people coming and going all day monitoring what goes in and out of his body, oh so sweet nursing staff and slightly geeky, brilliant medical staff.

But things are also quite different.

Yes we are in a new hospital with new rules (for instance they don’t want me to pee in his toilet for fear the toxins he’s urinating might splash up and get on my skin!). Yes the view is less fabulous (we look out on a massive eucalyptus - covered hill with only the top of Sutro Tower as a visual distraction). Yes the names and faces are all brand new (somehow their oncologists seem a bit more capable of empathy and relatedness).

But what is mostly different is us.

Unlike the first hospitalization which started with Tad quite sick from a sudden bout with pneumonia which luckily clued us in to the fact that his white blood cells were rapidly turning into Borgs, this time around Tad is beaming with health. Two days before being admitted we were working hard in the yard, he was cleaning the garage, schlepping the green trash cans, porting heavy bags of mulch, digging and planting new plants. He was eating well and actively preparing for the one month absence. After a few days of struggling with depression in the beginning he had had the realization that he needed to stay busy and connected during his time home. And it worked like a charm.

It is not til now that I see how much the pain from the pneumonia (and some minor surgery he’d had two days previously) had profoundly affected the way he experienced his first round of chemo. It also deeply impacted me since there seems to be a direct connection between his experiencing pain and my squirming like a school girl, wanting to accost the first medically-inclined person who goes by to make it all go away NOW!

The down side, as he pointed out yesterday, is that he has to go through chemo with his eyes wide open this time, none of that slightly dulling experience of major analgesics to keep a gentle veil between him and reality.

We’re also different in that we know what to expect this time unlike the first round when every cough or spike in fever appeared– in my fearful brain—like the announcement of the last days.

I suppose the most obvious way we are different –and words suddenly fail me -- is that somehow we are perhaps more present to daily life.

The gentle rhythm we had developed during our one-month break seems to have a lasting effect on our life today. We seem closer to our tears and our laughter comes more easily. We are more loving, more tactile, more peaceful. We seem to be grounded in our love in a palpable way.

Our squabbles are brief and almost warm – like when Tad insisted on stopping at Kohl’s to buy new pajama bottoms during our frantic drive from Santa Cruz while I was dead-set on trying to get to the hospital at the agreed-upon time I had painfully extracted from the charge nurse.

(For those who like to know how stories end: We only arrived a half hour late after rushing by my place and miraculously finding parking IN FRONT of the hospital. But by then I was so agitated that I managed to lash out at the young man in Admissions who grunted his greeting at us and then again at the nurse who put us in a room with a loud, angry, middle-aged man who wouldn’t turn down his BLARING gun show on TV and complained loudly because we wanted to turn on the light. Fortunately they kindly moved Tad to his own room.)

If all goes well Tad will be out of the hospital on Bastille Day – all ready for another month of R & R and a visit from my 13 year old godson from Bordeaux.

In the meantime please call Tad now and then (415-514-5413), skype him (thaddeus67) or send him a card (Tad Crandall, Rm 1404, UCSF, 505 Parnassus Box 0290, SF, CA, 94143-0290).

Despite Luke Wilson's promises and the extra thirty bucks a month we both pay for the super fast 3G network, we can’t receive a single call on our cellphones in the hospital.

home... with a glimpse of the future

2010-05-29T15:35:00.000-07:00

It seems, when one has cancer, there is actually something really positive about medical staff coming and going all day long, poking and prodding, checking and verifying this or that.

We both thought that having Tad comfortably back in his home would be the healthiest possible thing for him.

But sitting at home, with post-chemo fatigue and knowing in a couple weeks it will be back to chemo hell again, makes it hard to really engage in life fully.

It seems easier for me than for Tad. I can whip up a daily list of things to do in a heart beat. I can keep my nose on my list and fill my days so that by evening I feel a sense of accomplishment. Clearly right now that's tough for him. The usual pleasures of gardening, going to movies, shopping and doodling on the computer have lost their appeal. And seeing him like this feeds my own fears that somehow it will hasten his death.

Curiously this is the opposite of our dynamic at the hospital where I tend to be the one feeling glum, goal-less and prone to fear while he - in the thick of the action - seems to be more upbeat, even on the most hellish diarrhea/fever/shakes/chemo days.

He will be back in the hospital in about two weeks. This time it will be at UCSF where we have already met the new oncologist, Dr Thomas Martin.
He laid out the plan for the next stages of treatment:
- One month in the hospital for a second round of chemo starting mid-June,
- Most of July at home for rest,
- Most of August in the hospital again for a third round of chemo plus a bone marrow transfusion - which may have to be done in LA,
- Most of September at home.

He was cautious to offer us statistics, possibility of survival, etc but he did hold some hope. He was cordial, purposeful, and visibly quite popular.

In the waiting room, unlike at the previous more posh hospital, we were able to meet with other people with leukemia. Because UCSF is THE leukemia center in the Bay Area people come from all over to get care there. Next to us was a 23 year old guy from Modesto. His mom explained he'd just finished recuperating from a bone marrow transfusion. He looked great.

This new oncologist explained the "remission" we've been so excited about has basically just got us to about one third of our goal. His job is to take us the other two thirds of the trip. He also explained that the original genetic information we'd received about this particular form of leukemia was incomplete. Further studies have shown that in fact Tad's cancer falls in the most difficult to cure camp of the three types.

Needless to say - we came home from this first encounter with a new doc feeling both hopeful and yet quite beleaguered and weepy.

Tad asked that I spend more time with him in Santa Cruz where I am enjoying the warm days (81 compared to 67 in SF) and doting on the vegetable garden which various friends lovingly kept on track during the last round of chemo. Since I am focused on preparing for the boards i.e. studying - it's easy for me to do.

The good news is we have to time to prepare for the next rounds. If you are willing to help out by being on a team of people who take care of Tad's cat, garden and house (and sometimes his husband) during the hospital stints please let me know. We hope to get a group of folks organized in SC who can share the burden.

normalcy...or almost

2010-05-23T08:06:00.001-07:00

Wednesday afternoon I joined Tad in Santa Cruz where he had finally arrived forty-eight hours earlier thanks to the loving Carl who agreed to fetch him in San Francisco and drive him home (during rush hour!!).
I had been looking forward to being there when Tad was finally reunited with his/our cat and garden but unfortunately I was in the Midwest attending a gathering with my family of origin.
I suppose it was silly of me to build up expectations: I had this fantasy that we would spend our month-long inter-regnum period (between two doctors) doing things that bolster Tad's health like daily walks, morning meditations, time in the vegetable garden, seeing friends.
Instead we came back to our usual routine of being quite domestic only --thanks to a mention from the doctor about being particularly vulnerable to bugs--we're even more domestic.
Tad is more tired than I expected. He can't put his hands in dirt - no doubt the single most healing thing he loves to do. He can't go near the cat litter box and has to be careful not to play too rough with her for fear of open scratches.
The first day he spouted his anger at the fact that he doesn't even really get a proper one month break: the next oncologist already has him down for coming to San Francisco to meet and do some lab work in a few days.
"I was planning on staying away from a frigging hospital for a month," he said to me.
The next oncologist is a bone marrow transplant specialist.
It seems the most promising procedure for long-term cancer-free living is a bone marrow transplant (many of which are done with one's own bone marrow cells causing a etymological conundrum in my opinion), a very painful and potentially lethal affair.
In essence people who get transplants instead of just chemo actually live longer with no sign of cancer returning after five years however they are more at risk of dying during the procedure than folks who just get chemo. The good news is that all of the data we see on AML are skewed by the fact that the median age of someone with this ailment is 67 years old (around 4% of people with AML are actually in Tad's age range).
So I keep praying that, in the same way he surprised everyone at the previous hospital by his robust return to health after chemo, he will surprise them all yet again.
But the part of me who fantasizes about some Hollywood version of Tad walking daily along the beach with me, sometimes twice a day, to slowly rebuild muscle mass, lung capacity, heart rate; the part of me that imagined some other version of Tad transformed by the specter of death into some go-getting extroverted super hero is letting go slowly and remembering how amazingly well he knows what is good for him. Right now it is lots of rest, reading and lying low. My job is to love him and calm my own fears that that might not be enough to keep him alive through the next round of hell.

phase one: nearly over

2010-05-15T20:02:00.000-07:00

While I was sitting at the airport waiting to embark on a flight to see family in Michigan Tad called me from the hospital.
"Are you sitting down?"
I could tell from the lilt in his voice that it was good news though one part of my brain did think "oh shit! what now?"

It's the same part of my brain that has a little mini-panic every time I call and can't get through by phone.

I know the signal isn't great in that room, I know he doesn't always hear his cellphone ring, I know he can't rush and grab it if he's in the bathroom. Still my first thought is: "There's something wrong."
So I was delighted when he told me he was going home on Monday.

This threw a little bit of a wobbly into our plans since I was hoping to drive him down to Santa Cruz myself AFTER my extended weekend visiting family and attending a wedding. A Monday discharge would make that impossible.

The star of this whole show is without a doubt Tad's immune system. It has surprised even the most seasoned doctors by its resilience. It has made liars out of a couple more who promised us hair falling out, possible opportunistic infections and a slow rebuilding of his immunity - at least three weeks. But the actual healthy results would be very disappointing to any decent disaster lover.

He will be back at the hospital in a month for a second round of chemo but in the meantime he gets to go back to Santa Cruz and relax, get back to living life.

We seem to have won the first battle even if we have by no means won the war.

I can still remember only a few weeks ago discovering my favorite moment of the day. Very early in the morning, just as I was waking up, in that 10 or so seconds that it takes me to step out of my dreams and into my real life I was able to both be awake AND not be aware that my beloved may be dying.

Then after this very brief hiatus reality struck. I reminded myself: Oh yes Tad has leukemia. And the pit of sorrow started up yet again.

How much our worlds can change in just a few weeks (and sometimes even in the blink of an eye).

murmurs of home

2010-05-12T08:31:00.000-07:00

The strangest thing happened yesterday.

Quoting a conversation with the oncologist two days ago, Tad will be staying in the hospital another two weeks so he can rebuild his immune system and gain strength. This would make it safe for him to be in the outside world without catching any kind of bug or bleed to death from a minor injury.

Then yesterday the infectious disease doc (the person in charge of managing the infections that come up while the oncologist blasts the hell out of his immune system) suggested he may be going home as early as this weekend.

She says that his immune system is rebuilding itself very quickly, unusually quickly.

The ironic part is that Tad presently has what is no doubt the most impressive symptom he's had since the beginning (well maybe second to the shaking shivers): nearly all of his upper body is covered in a splotchy rash that no one can explain and I'm sparing you the details in my description of the rash. It doesn't hurt per se, it doesn't itch, it just bubbles up and spreads.

Two days ago he was able to take a long hot shower, one of the great luxury moments he's allowed every few days. This consists in taking him off all the lovely tubes for about 20 minutes. The staff then wrap the catheter on his arm with a plastic bag, taping it sealed at both ends. Et voila!

After the shower I helped him dry off his back which was free of any rash at all. It was just on his arms, his forehead and his upper chest.

So yesterday I was quite shocked to discover when I lifted his shirt that it had developed across his entire back. I suggested we call the nurse to explain that this was becoming urgent and that perhaps something could be done to stop the spreading while waiting for the results of the biopsy they'd finally taken that morning.

When she arrived she didn't know what to do so we asked her to call the attending doctor and explain that it had doubled in size in less than twenty-four hours. Thrown off balance no doubt by our request and steadfast in her role to play bumper cars between docs and patients, she replied "Rash?, What rash?"

This only maddened Tad (and me). So we began to rummage for the doctor's business card which she had left with a smile and a "Call me anytime" the first time we met.

Apparently she didn't really mean "anytime". I got a human message service asking for a concise message. Who knew those still existed?

The nurse left and called the same doctor from another line. She came back to the room a few minutes later saying that the doctor was sure it was nothing serious and that she'd be in the next morning.

I've been told by some folks that I'm a bit too harsh on the staff which is no doubt true. At the same time we are clearly navigating systems in which there are many non-spoken rules - the very thing that can drive me around-the-bend crazy.

So we're still waiting to find out what the "Rash that Ate Manhattan" actually is and to find out if, in a few days, Tad will be back in his sweet house or still attached to a tube and a bag.

could be...might be...maybe is...good news

2010-05-08T17:42:00.000-07:00

Remission: noun, 1. (medical) the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity; 2. (theology) remission is the forgiveness of sin.

This whole little wrestling match with the dark angel of leukemia has taught us both to live one day at a time avoiding any possible future tripping, either negative or positive. For the last two weeks I've found myself saying to so many people, "You know we'll just have to wait and see. This isn't a time for making plans."

Thus much to my surprise it was with a bit of trepidation that I took in Tad's voicemail this morning: "I've got real good news. Call me back."

I actually heard the message as I was leaving the pool and was pretty sure I knew what he meant. I decided to go out for lunch first.

I played the voice message for my friend John who also immediately knew what it was all about. The day before the oncologist had told us he would probably be getting back the preliminary results of the second biopsy which would tell us if he had indeed blasted the cancerous cells out of the park or not. He also told us nearly three weeks ago that if we got to "remission" Tad would only need to have two more of these five week stints in hospital with chemo. He finished rather ominously by saying, "And if we can't we'll have a discussion to see where we go from there."

John was giggling with excitement: "Wow - that's such good news!! I'm so excited." Still I wasn't willing to go there for some reason.

Two weeks ago I had no logical explanation for why I would burst out in tears one moment and not the next. Why one song made me cry but not another. Why walking down 20th Street near Dolores Park made me cry more than say 14th Street. Why a friend's mention of the Monterrey Aquarium suddenly brought on tearful memories with Tad but not a mention of Greece.

So unpredictable was this whole emotion thing that I actually found myself saying the most surrealistic thing to my friend Ross: "I know that I just told you a whole litany of really tragic things and I have no idea why I did it with such a matter-of-fact voice or why in ten minutes I may start crying again."

(And I'm not the type to hold back tears out of shame or modesty.)

After lunch I called Tad and told him to wait til I got to the hospital so that he could tell me face to face.

When I arrived he said: "Your wish came true" with a funny smile.

I knew he was referring to all those times the first week when we sat in the hospital room holding each other, crying together and me saying, "I really don't want you to die. I hope we get to spend a lot more time together."

So what we now know is that -
1) quantitatively the cancer cells are no longer perceptible in his bone marrow and
2) qualitatively this leukemia is the genetically the easiest kind to knock out.

The difference between 'remission' and 'cure' however is vast and is measured in years. Five years to be exact. If after five years the little bugger hasn't started replicating like crazy and taking over his immune system again then he is considered cured.

As the definition says - remission is the absence of disease activity, not the absence of disease.

Inch allah!

the million dollar hospital view

2010-05-08T14:52:00.001-07:00

tornadoes passing in the night

2010-05-07T18:30:00.000-07:00

A few nights ago I had a dream - an unusual thing these days as I haven't had very deep sleep since the original leukemia diagnosis.

In this dream Tad and I were in a vast house with other people looking through giant picture windows out on the evening sky - not too different from the huge hospital window that looks out over the Golden Gate where we watch the orange sunsets every night.

In the dream we were looking at a huge storm brewing above a nearby city and suddenly I saw tornado clouds descending towards the earth, clouds I hadn't seen since my childhood in Michigan.

I warned everyone at the party these were tornadoes forming and we all needed to go under tables to protect ourselves. Miraculously the killer winds kept going past us but unlike in real life no windows burst, no objects went flying, no roof was ripped off. They just passed us by.

That was the end of the dream.

Yesterday after a rather long unwanted rant about how he felt trapped in jury duty the day before and how the judge was vindictive and how he almost didn't get out, our oncologist shared with us a bunch of incomprehensible geeky genetic information which he presented as "very good news." I could see from his excitement once again that all this scientific stuff really turned him on but I could tell from Tad's face that he too had misunderstood.

"So what does this mean in laymen's terms?," he asked.

"Basically it means that the genetic make up of your leukemia has the most positive prognosis."

That same day the infectious disease MD Dr Shelly Gordon, the feisty, brilliant kind of older woman you really want to have on your team, told Tad that he was actually overcoming his various infections quite quickly for someone who's immune system had been shot to hell by a constant flow of toxic chemicals for seven straight days (she didn't exactly say all that).

Indeed the diarrhea, fevers, shakes, and loss of appetite all seemed to have past. Right now he's dealing with a painful mouth and throat infection that they say is no doubt caused by antibiotics themselves (one of those fun fungal infections).

So though we are both showing all the symptoms of two people afraid to jump to any positive conclusions - we're both pretty happy that for now the tornadoes seemed to have past and we're both intact except for a few scratches here and there.

(Within the next 48 hours we should know from yesterday's biopsy if this first round of chemo actually kicked the cancer into remission or not - this information will have a big impact on what the next few months look like including the likelihood of whether Tad will be around to see the new Bay Bridge).

the bottom of the bell curve

2010-05-05T08:48:00.000-07:00

So medically this is the lowest point of the chemotherapy process.

This is the moment when all of Tad's immune system has been whacked out and he is vulnerable to just about anything.

It's true he is on three different intravenous antibiotics and an anti-fungal to help keep icky things at bay.

Ironically our emotions seem to be on the opposite end of the spectrum. The toughest moments were in the beginning when we first got the news, were being told to prepare for this or that ugly scenario and really felt powerless over the entire process.

When your immune system is being eaten by fast-dividing cancerous cells nobody stops to ask you if you want a man or woman doctor, if you want this hospital or that, if you want to talk about the different chemotherapy contents and the havoc they will wreak on your body. They just get you to the closest bed and the closest IV stand.

Even though Tad has been going through painful bouts of severe diarrhea and more fevers (without the shakes this time) we both feel more calm.

I'm not allowing myself to write the word 'optimistic' - but there is an element of hope.

Yesterday we spent some gentle time together just talking and cuddling. He finally let me take out the buzz-shaver and cut his hair --back to the military 'do he once had in the Navy-- in anticipation of the promised hair loss. For some reason I find inexplicable pleasure in doing this so I was delighted. While he had his back turned I bent down and slipped a swath of the curly brown hair into a rubber glove hid away in my pocket.

One of the nurses who's felt like a true ally from the beginning and has always kept an appropriate professional distance came in for the hundredth time and this time said almost in a whisper, "You two have what I have always dreamed of having in my life but could never find."

It was an uncomfortable path to feeling good about the deep love that binds us and is visible to others. This feeling is not unlike the one I have been experiencing each time I go to see the neighbor in the next room: an older gentleman, recently moved to the Bay Area, who was diagnosed with the same unusual form of leukemia. He is actually two days behind Tad in his treatment but I can tell from my visits that the whole process is taking much more of a toll on him. He is not as young, not as resilient perhaps. I walk away from his room both really sad to see how huge his struggle is yet optimistic because he shows me that things could be much worse for Tad.

(Now that I think about it - I don't remember ever having had this feeling of seeing someone's suffering as a conscious message about how good things are in my own life. I'm aware that many people do. I imagine unconsciously the fact that I'm usually healthier permeates the relationships I may have with folks who struggle.)

Yesterday I was broken-hearted to discover that our neighbor was actually moved to another room because he fell for the second time. It seems the chemo has caused dizziness and instability in him.

The next few days may actually take us back to the sorrow and tears. The doctor will be both delivering the news of the first bone marrow biopsy which happened two weeks ago yesterday AND share with us the initial results of the chemo from another biopsy he hopes to do today or tomorrow.

In the meantime I am simply being with what we have before us - not allowing my oh-so-fertile imagination to begin writing the rest of the story before it happens.

As I write these words the morning sun streams into my apartment hitting a bouquet of bright yellow tulips just so. For now it's sunny.

living ontologically

2010-05-02T17:08:00.000-07:00

A few weeks ago the most surprising thing happened: I woke up at 5 AM urinating in my sleep.

It probably goes without saying that this hadn't happened to me in a very long time; a sort of wake up call from the ethers. I made coffee and retreated to my living room to write down my very vivid dream. Cocktail party, shakers and movers, seduction, furtive glances, playful bon-mots; in essence it was reminiscent of my life in my 20's in Paris: .

For some reason while writing I found myself called to reach for Victor Frankl's "Man's Search for Meaning" which I opened randomly and began to read. The section was about living a "provisional life", one which is a sort of painful parenthesis on real life, a parenthesis with little meaning or goal. Frankl developed this notion by watching fellow prisoners in the concentration camps and their difficulty dealing with not knowing when their imprisonment would end. Heidegger I believe wrote about a very different way of being: ontological living i.e. living fully in the moment as if we may die the next.

As I was writing all this even though I was quite happy with my life I remember wishing I were living more ontologically, with more honesty and boldness, less hesitancy. I actually found myself going to fond memories of my own health struggles in the early 90's during which learned men in white coats assured me with absolute certainty that I would be dead before my 40th birthday. At that time I remember being so frank, so blatant, so present to my own life and the bigger Life.

Alas what my delusional mind had conveniently managed to omit from this memory were the many long moments of abject sorrow, long nights of crying myself to sleep from fear of pain and the unknown and the difficult awareness (both reassuring and frightening) of being absolutely alone in the face of certain choices concerning my health and my body.

Last night in the hospital with Tad through blurred vision I slowly came out of my slumber to hear my beloved struggling through terrible chills and with each deep breath uttering, "Oh my god; oh my god". Such was the pain of breathing in that state of what the nurses call "rigors".

He was freezing as he has been several times in the last three days and needed blankets. The nurse at his side on the other hand had one single goal in mind: get a proper reading of his blood pressure, a task which evaded her again and again for some reason.

I suppressed my urge to insult her and bark commands at her and instead got out of my foldaway bed, walked around her and began to cover him with layers of blankets. When I was done I lie down next to him pressing my warm body against his and wrapping my arms around his chest from behind. I held his shaking body in mine and whispered soothing words in his ear while she walked out the door. Though I believe it felt good for him to feel me there I actually can't be certain.

One thing I am absolutely certain of however is that only he could feel the pain. As much as I yearned for it to go away, as much as I wanted my own suffering (caused by seeing him suffer) to go away, I knew that in reality there was nothing I could do but be a witness to his pain.

This reality continues to be unbearable. I am a do-er, a person who does, a compulsive. I find solace in doing, undoing and redoing.

I would like to believe the many staff people working around him are doing everything they absolutely can to keep him healthy and help him survive this cancer. But the part of me that wants to do, the part of me that can't bear just sitting and watching, finds fault with them, wants to yell at them: Make it go away!! Don't just stand there - Make it go away!!

Today I'm living ontologically in a way I could never have imagined. There are incredible moments of bliss such as when we joke, look into each others' eyes, cry together or even this afternoon as I swam my laps in the gym slowly counting each breath in a way that felt so much more alive than two weeks ago. But then there are incredible moments of pain and learning to let go.

"God grant me the serenity..."

slice of heaven

2010-04-30T10:42:00.000-07:00

Yesterday was the last of a seven day run of being attached to a bag of chemotherapy. Now we wait while the little buggers continue to destroy Tad's immune system...and the cancerous cells that are colonizing it.

They keep telling us this may result in painful mouth sores, nausea, spikes of fevers, opportunistic infections, loss of all hair - among other things.

Tad's appetite is definitely waning particularly at night when even the smell of my Trader Joe reheated meals seems to bring him a wave of ick.

But one of the highlights of not having to have a tube with chemo pumping into his heart was that he actually got one hour of freedom from the towering IV rolly-thing allowing us just enough time to take a short walk yesterday.

Tad wanted to go to a coffee shop (namely Peets) but the nurse warned that the two block walk was too far away. She insisted we stay close to the hospital. It was a glorious sunny day in Pacific Heights so we walked along the hospital's edge taking in the lavender, ginger stalks, broom and callas.

With the warm sun pushing us along we decided to slowly wander a demi-block up Sacramento to Lafayette Square past porticos, mansions and sculpted shrubs. For a few minutes we sat on the edge of the park and Tad was actually able to touch grass for the first time in 12 days. People were lying out sunbathing higher up in the park despite the bracing cold Pacific breeze.

I was much more acutely aware of all the sensual pleasures of being outdoors than I am when I leave this place daily. I was vicariously living this reconnection with the non-hospital world. It was no doubt the fact that I was doing it with Tad that made the smell of lavender and rosemary stronger, the colors a bit brighter, the clouds a bit more puffy. Though I hold on to a fantasy of that first day when in a month we step back into his yard, see all the flowers that have appeared since the last visit, admire the burgeoning vegetable blossoms, I am also painfully aware that I might leave this place with an urn of ashes. I don't let myself feel that pain much anymore.

All we have is this moment.

We made our way back down to the hospital and once inside popped into the lobby cafe where little white haired ladies with shockingly red lipstick volunteer as part of the hospitals "guild" to serve simple fare to anyone who'll stop by, apparently as an ongoing fundraiser for the institution. Tad sipped a cup of coffee by lifting the face mask and I ate my first grilled cheese sandwich since childhood.

It seems funny to me that this 19th century tradition of "guilds" still exists in the corporate, big-stakes world of modern medicine. I just checked the hospital's Web site and noticed that last year this "non-profit" had a turnover of several billion dollars and a profit of some $500 million. If they'd distributed last year's profits among all the volunteers each one would have made $100,000.

When we got back to the room June the perky 40-something white nurse who always talks a couple decibels above social norms asked us where we'd been. When I told her "the park" she laughed and called me a joker. Then her face changed when she realized I wasn't joking. "Oh my god! Don't ever leave the hospital premises again!! He looks strong on the outside but on the inside he is totally compromised."

She joked about it again this morning when she woke us for breakfast with a slightly stern smile, "Maybe you're so tired because of that crazy walk you took." Then she broke into a long list of all the things that could have gone wrong.

Apparently our twenty minutes of blissful freedom were a serious risk. To me they simply felt like a slice of heaven stolen in the midst of this struggle.

This morning is all about trying to manage Tad's chills, fever and body aches and hopefully finding the organism that's causing them.

Such a small slice...

Day 10: a walk and a talk

2010-04-28T08:38:00.001-07:00

Yesterday was the best day and the worst day since this all began ten days ago.

Tad stripped down and I gave him a sponge bath standing up in his hospital room with the million dollar view of the Golden Gate Bridge and the Headlands. Hints of Little House on the Prairie surrounded by 21st century devices. Though he did get chilled since we were missing the potbelly stove to keep him warm.

He put on his favorite Santa Cruz shorts and a big sleeveless t-shirt, threw on a jacket and a face mask to keep out any bugs and we actually walked downstairs together for the first time (with the help of an elevator). Then we went outside! Walked right through the big sliding glass doors IV's wheeling behind us like a thoroughbred dog. An astute observer would have noticed the orange sticker on the drip with big black letters: CHEMO.

Despite the mask on his face Tad was able to feel the fresh Pacific breeze on his skin and take in the plants and bushes in the hospital gardens. It tired him out but he began stretching and moving his body to get the 10 days of bed kinks out of his muscles. It was glorious to see him swiveling his hips this way and that, raising his arms to the sky, loosening up his 43 yr old body all full of toxic liquids with strange chemical names that sound like unexplored foreign territories.

It was this same day that we had the "Here's what to do if I die..." Talk.

I had left a voice mail with Matt the social worker pleading with him to help me find the words to bring up this subject. I simply didn't have it in me. I think another part of our magical thinking is that if we don't talk about the post-humous plans then we can keep death at a distance. Matt called me back a few hours later telling me he had been with Tad discussing that very thing when I called.

A few minutes after my arrival, as I sat on the bed caressing his gentle face (post-hand sanitizer of course) Tad said to me: "I want to be cremated and I want my ashes to be put next to my mom's".

The idea that this beaming, loving man will one day be a box of ashes is unbearable to me. Six years after my grandma's death I still find myself yearning to feel the touch of her loving hand on my face, her grey-blue gaze looking deeply into mine. How do we find the strength to live without these things once we've tasted their deliciousness? How will I find the strength if he does die?

The thought of it reduced us both to silent sobs.

About six months into our relationship we went for a two day wilderness hike in a remote coastal area called King's Cove. It was a tough, exhilarating hike along coastal trails then up over the ridge and back down through forests and meadows. The next day to get out we drove along the coast and then up over rolling coastal hills sprinkled with cows and farms. We didn't talk for hours we were so full of nature. It occurred to me that that was unusual for me. I had always had boyfriends as chatty as me. I commented on it and he replied, "Yes sometimes I just need silence."

And that has been a key element in our couple. Where I would like sloppy, jump-up-and-down, puppy dog greetings I often get subtle glances, sweet smiles and after a time a long slow hug with a "Welcome home my love" whispered in my ear. It was disarming at first. Now I find it soothing.

So here we are talking about the logistical details of life after Tad, or at least life after Tad's body is done. And it is mostly painful silence, long sobs and gentle touch.

is that a rope or a snake?

2010-04-26T10:37:00.000-07:00

My spiritual practice teaches me to live one day at a time, one moment at a time, one breath at a time.

This has been an incredible gift for me, a man who has always lived his life tilted forward in movement.

It is particularly difficult when I am planning something for the future. How do I stay present while organizing that fabulous trip to Greece and Switzerland? How do I remain grounded while developing a professional project with budgets, timelines and deadlines? It's a hard balance to find: between projecting into the future then coming back to the present as honestly as possible.

But this gets worse when I'm projecting scary things into the future.

According to some studies this is what we do all the time with mini-thoughts and emotions. I hear something (usually about change) and I immediately without knowing it wonder about how that thing affects me, others and the future, even if it's only for a flash of a second.

So when the man you love is connected to two plastic tubes injecting noxious chemicals into his body it's not surprising that I project into a scary future. Not exactly a trip to Switzerland.

I've gone way beyond future-tripping over the scariness of the word "cancer". That was three lives ago AKA last Saturday.

Now I grapple with the scariness of chemo and leukemia. The documents we've been given tell us he will get mouth sores, nausea, lose his hair, fevers, opportunistic infections.

Thus every time I touch his beautiful face and it feels a little warm, I leave the present moment. Everytime he complains of an ache I wonder if this is the beginning of the end.

In a way if I'm just in my fear and projecting into some fantasized future that's not real, then I am already creating a distance from him, from myself and from reality. Maybe that's the pay-off: scary future-tripping allows me to not feel the unbearable pain of reality.

And then there are the mental excursions my imagination and I go on almost voluntarily, the what-ifs.

What if he..

Dies?
Gets really sick?
Can't pay his bills?
Doesn't say good bye to his dad?
goes into a coma?

What if other people....

don't get the opportunity to say good bye?
to spend precious time with him like I have?
don't get to hold his hand?

What if I...

Am not strong enough?
Can't stay present and lose myself in fear?
Can't get back to my own life?
Lose him for good?

I am aware that these mental machinations are only sources of pain.

Yet studies show that people who read the "in case of emergency" placards in airplanes are actually better equipped to handle an accident.

How do I find that safe place between preparing somehow (but for what?) and staying present?
How do I handle my panic for instance when I call and can't get through and I imagine the worst?
How do I live in "Now"?

reactions

2010-04-23T22:26:00.000-07:00

People react in unexpected ways when you tell them you're partner may die soon.

I was amazed that some people to whom I feel REALLY close suddenly stopped calling. Some family members have reacted with the usual reassuring words but no sense of any kind of compassion or real heartfelt emotion.

Yesterday at the vegetable plot a woman I barely knew came up to say hello and asked about Tad. When I told her what had happened I began to weep uncontrollably. This short ex-school teacher with torpedo breasts just took me in her arms and held me while I cried.

Then she asked who would be taking care of the garden. When I told her that I wouldn't be making it there for at least a month given the chemo regimen, she assured me she'd talk to other neighbors and organize a gardening team to keep our garden weedless and watered.

I pointed out that the irrigation system was broke and they'd have to water by hand. She replied, "Oh show me which part and I'll get it fixed for you."

Maybe it's easier for strangers to be more loving and forthcoming. Maybe family members are just too damned close to be able to respond that way - I imagine they are going through what we went through about 4 days ago: shock and disbelief, mixed with anger and refusal.

One of my neighbors was clearly still at a stage which Tad and I had both gone through a few days ago. Let's call it the I-bet-I-can-find-a-hole-in-your-diagnosis Stage. Based on an old email she sat me down and tried to convince me that the pneumonia diagnosis was probably caused by a specious lung fungus she'd heard about on NPR that is floating around and is mostly escaping the watchful eye of medical doctors. I had to stop her mid-theory and tell her that she had missed a couple of trains and I had all the info necessary to debunk her idea.

Funny how we get so attached to these other ideas. The second night I stopped the oncologist dead in his tracks and confronted with all my reasons why I thought this was a lymphoma and not a leukemia -- all purely based on Google blitzkriegs (lymphomas are easier to treat and cure than leukemia). He listened carefully then responded that maybe I was right but that if it was a lymphoma it was a very aggressive one. I finished by saying, "And maybe this is just the part of me that wants to refuse this reality."

He was kind enough to just smile.

So here I sit in a hospital room with a million dollar view of the Golden Gate Bridge in awe of how life can change so quickly. I haven't cried once today whereas yesterday I couldn't stop. I went from sobbing non-stop over the fact that the love of my life may not be alive in a month to a sort of deep serenity today: this is what we are going through and any future tripping is a vain endeavor that can only lead to pain.

Breathing in the mystery of it all.

keys on the table

2010-04-22T20:18:00.000-07:00

Today I took Tad's car down to Santa Cruz. I wasn't comfortable having to change two cars around every time the crazy city of San Francisco comes through to sweep the streets, a policy I can only imagine as a cash cow for the deficit-laden burg.
I also took his car down because I could no longer stand the pain of seeing his keys on the table in my living room even though he wasn't in my house.
When Tad is in my house, those three and a half days every two weeks that we call "shared custody of our couple" I see them looking up at me.
When he's there the fridge is full of good stuff I've gone out to buy at Trader Joe's with this incredibly maternal delight: I walk through the store literally asking myself over and over again, "what would he really like this time"?
When he's there I have a bouquet of cut flowers on the table in the living room right next to where he puts his laptop.
When he's there I am less of a busy-body, feel less the need to go out and be with people, to chat on the phone, to run around.
When he's there I read more. I breathe more slowly. I smile more.

I guess it's no surprise that I usually stop crying when I'm in that hospital room next to him. The fear that he might be dead in a few weeks dissipates. The tugging anxious feeling I get when I am out in the world goes away.

I spend entire days (and some nights) here not just because it takes a lot of work to put your life on hold for 5 weeks. Though I am here for that: for helping him with the paper work, the phone calls, the contacting family and friends, the finding someone to look after the cat. But I'm mostly here because I'm afraid that once they've blasted the hell out of his immune system with these chemicals that he just might not survive. Being in the same room with him - as much as possible - is my way of overcoming that fear.

Of course it makes no sense. I'm not going to get into a wrestling match with the grim reaper should he (or she) come by. If I give it more than a moment of thought I see that my being there doesn't keep death away even if I like to imagine that having a loved one close by somehow prolongs life through some kind of love-based immune stimulation.

No. My thinking is purely mathematical. If he is going to die I want to be with him as much as I can before he croaks. So if he is going to die soon a possibility our oncologist puts at 50% then I want to get as many minutes in now as possible. I am happy to spend more time away from him to balance this out in, say, ten years.

This is not a new feeling for me. Ever since the AIDS epidemic tore through my circle of friends like a weed whacker taking out the tall plants I have been far less patient. When I get stuck in traffic I sputter and spout because I feel like somehow someone is wasting MY time. The notion that hundreds of people are stuck in the same traffic jam and all just as unhappy means little to this part of my brain.

Life is short. I'm stuck. And I don't want to spend my precious hours this way. It is seriously near the top of my list of reasons why I don't do nine to fives.

We are getting ready for bed. Tad has just had his first shower in hospital since arriving here quite unexpectedly four days ago. (For the background info: he woke me up with pains that I figured were due to his strained work out the day before. He insisted the pain was more intense than work-out pains. I took him to ER where they said he had a mild version of pneumonia. I left for the day and said I'd meet him at my house that evening, only to find him still hospitalized and receiving a fresh batch of platelets - for some reason he had next to none. A whirlwind later - we landed in oncology with a leukemia diagnosis).

His feet and ankles are swollen from all the water they have to pump into him to keep the chemo flowing through his body. He is still in fine form, full of smiles and sassy comments. We are avoiding any talk of what life without an immune system might look like in a few days. And we're ready to sit down and watch a silly Italian movie that will transport us to Venice - a city he discovered this summer.