Friday, April 30, 2010

slice of heaven

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...

Wednesday, April 28, 2010

Day 10: a walk and a talk

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.

Monday, April 26, 2010

is that a rope or a snake?

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"?

Friday, April 23, 2010

reactions

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.

Thursday, April 22, 2010

keys on the table

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.