held in the arms of gratitude

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

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

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

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

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

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

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.