Tuesday, May 31, 2011

memorable memorial day

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.

Thursday, May 26, 2011

hope and fear

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.

Wednesday, May 25, 2011

seattle

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.

Tuesday, May 17, 2011

graduation

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.)