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...
Monday, July 25, 2011
Tuesday, July 19, 2011
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.
* * * * * * * * * * * * * *
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.
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.
Wednesday, July 6, 2011
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.
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.Thursday, June 30, 2011
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.
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.
Sunday, June 19, 2011
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."?
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."?
Monday, June 13, 2011
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.
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.
Tuesday, June 7, 2011
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.
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.
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