stanford hospital - day five

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?

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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

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.

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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)

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.