Tad woke up yesterday morning incredibly ill. He could not manage to keep his balance nor stop shaking.
We made it to our appointment at the oncologist's office thanks to a neighbor who helped me get him into the car but I quickly realized he needed to be in the Emergency Room at the hospital across the street.
For the next three hours I watched painfully as Tad got more and more pale, weaker then unconscious - as they pumped him with all kinds of fluids to help him come back to awareness and start to breathe normally again.
As this was going on around me I was being approached by a myirad of people telling me bits and pieces but mostly asking so many different questions that I shifted into a near-altered state: completely calm with a steady, deliberate voice. Among the interactions were someone giving me the contact information for the crematorium, someone asking if we preferred he be transferred back to Stanford since it's protocol to treat at the most recent hospital and someone talking to me about banking issues and death certificates.
My biggest torment though was caused by the incredible pressure of being squeezed between my promise to Tad to resuscitate him if he should go into cardiac arrest and the insistence from the doctors -- again and again -- that resuscitating him is not a good idea. Doctors rarely have an opportune time to discuss this (rushing into an ER, transferring to an ICU, etc) -and they also don't like it when the answer is not convenient to them. Tad's request is that I have him brought back to life in case of an accident and then, if his quality of life is completely zapped, I agree to have him unplugged. Doctors don't like to do this with patients who are fragile and who may not have long to live anyway.
One of them said to me snarkily: "Do you know what it's like to be intubated forcefully? Have you ever been intubated emergently?" Another simply said: "I'll do it but I'm sure I'll break a rib or cause him severe damage."
Tad did not have an accident and five hours after our arrival he awoke in the ICU, looked into my eyes and said, "Why are you so calm?"
The truth is I don't know.
I don't know how we find the strength to get through each day.
I don't know how we can possibly feel like we've never been happier and how incongruent that is with the fact that Tad is going to die.
I don't know how Tad has found the strength to stay alive and how he has "defied every bell curve" according to the doctors.
I don't know how we can get back to that sense of happiness when we suddenly feel overwhelmed by the sheer sorrow of the fact that soon I will be here and he won't, the fact that illness is mostly random and unfair and has struck ruthlessly in the deepest, most intimate part of our lives.
I don't know how much time Tad has left to live.
I don't know what happens to a person's essence after the body dies.
I don't know if I'll be able to keep Tad's love alive inside me in a year, five years or ten years.
I don't know.
Today he was moved to a General Medicine floor away from the starkness of ICU. Being in a small local hospital is such a welcome change after the giant teaching hospitals. When the RN walks in and calls me "Hun" then slips me an extra meal my heart skips a beat. I am assured that I was not crazy in my pain at Stanford because they were indeed keeping the sweetness of life out of nearly all medical interactions. That absence caused me so much pain during our month there.
We have begun talking to hospice doctors and looking at what kind of in- home care can be set up; how we can make Tad's life as long as possible and as comfortable as possible from the comfort of his beautiful little house and garden.
Last night my dearest friend John and his partner came down to spend the night and keep me company. They slept on the new, navy blue, sofa-bed I bought Tad for his birthday. Astra slept with me, keeping Tad's place warm for him.
Until he can come back home.
Wednesday, August 31, 2011
Sunday, August 28, 2011
the secret to life
I woke up very early Friday morning --two days ago-- thinking it would be the most painful day of my life.
Not only did I need to pack all of Tad's and my belongings, but I also needed to take my sweet, pain-riddled husband home to die. As I walked across the flawless Stanford lawns toward the hospital I found myself wondering where I would possibly find the energy to get myself through this tragic day.
But -- as my brain loves to forget -- life is rarely the way I think it will be.
The most difficult part of the day ended up being the waiting-game. Stanford took forever to do what they kept promising: finalize all of the discharge tasks. Planned for 2PM it actually happened at 7PM, a mere blink of an eye in Rigid-Institutional-Time but an eternity for someone with a death sentence eager to be home.
I discovered that the actual tasks of folding clothes, working with discharge staff, carrying food trays, fetching coffee were all quite soothing to me, pleasant even. However at one point I couldn't hold it anymore and my tears began to flow:
"I can't believe I am taking you home to die. This is too much for me. How did this happen?" I sat on the bed in a heap.
Tad looked at me with his gorgeous smile -- and a face of misunderstanding -- shaking his head and saying: "But that's not how I see it at all. I'm going home to live. Let's go live."
This waiting was nothing new. When the doctors first came by a few days earlier to deliver the bad news of the biopsy I was absent. Since the results were "complicated" they offered to come back at 1PM so I could be present. I was expecting the usual cancer-chemo, six-of-one, half-a-dozen of the other outcome but also knew it might not be good news. When I arrived at 1PM I notified the team and was told someone would be in shortly. That didn't happen. Each time I hit the call button the receptionist assured me that the oncologist was informed and would be there soon.
At 5:30 I went out to where I knew the doctors congregate and grabbed the first (no doubt unsuspecting) oncology team member, a tall, lanky Jewish-looking kid in his early 20's with expensive shoes beneath his white coat. I looked him in the furtive eyes and said: "I've been waiting four hours for the results of a life or death biopsy. I think it is highly unethical for you and your team to keep us waiting so long. Please do something about it now."
I must admit I was really grateful to see the Big Boss oncologist arrive five minutes later and equally grateful to hear his honesty -- something I had been seeking from big-shot doctors for months. I could see he and his lovely fellow were squirming as they told us that the leukemia was already active but the immune system just wasn't. They offered to treat again but told us it would probably be useless. The boss made some banal comments about living fully and enjoying the time left - only vaguely hiding his discomfort. When I told him I could see it wasn't easy for him he acquiesced and replied that he had this conversation "four or five times each week."
I asked him to describe to us what death from leukemia would look like. (It is in moments like these that I realize I am an optimist; I never really see disasters coming. Real frank black and white reality words -delivered with love- are what help me the most.) Much like my many friends who died of AIDS in the 80's and 90's he explained Tad may simply die of an infection that his leukemia-ridden body and the many anti-biotics can no longer overcome. Or because of the way the cancer weakens the circulatory system he may just have a brain hemorrhage and fall asleep - never to awaken. Unlike tumorous cancers however, the oncologist assured me, leukemia doesn't put pressure on your body in extremely painful ways.
He gave no indication of a time table.
Among our back-home tasks yesterday -including laying out pills, fixing the vacuum cleaner and unpacking-- was the simple gesture of filling the fridge with good stuff. I waited til dinner time when I know Trader Joe's is less busy and asked Tad what his wish-list was. He announced he was coming with me.
I suppose I shouldn't have been surprised. He had already jumped in his pick-up and gone to the hardware store for electrical tape to repair something. I began to get anxious when I saw that he wasn't coming back quickly enough. Images of the guys at the lumber company calling an ambulance to resuscitate him flashed through my mind. Then suddenly he came around the corner, the back of his red pick-up truck full of new plants and flowers he'd just bought at the adjacent garden center. Where he was getting the energy and feeling pain-free enough to do all this was a mystery to me. Just the day before he had been in a bed at Stanford Hospital buzzing again and again to get more pain relief.
At Trader Joe's we began filling up the cart with foods we rarely buy. It wasn't something we agreed on, everything just seemed appealing to us. Between UC being back in session and the surf season still active there were lots of young, half-dressed, cute things wandering around the store which, the usually mute Tad pointed out to me with relish. After I went through the frozen food section picking out our usual fare he insisted on going back to check. I went to the end of the aisle and watched him slowly walk along the giant freezer sinkholes carefully perusing each product with a smile. He came back with some kind of lemon/ginger-snap ice cream and fish sticks - things I would have never imagined buying for him.
Ironically Trader Joe's has played a key role in our couple. Just two blocks away from Tad's house - it's the little Ali-Baba cave I run to on a regular basis to make yummy meals for him - a devoutly non-culinary type. A big part of our love story has been me preparing meals and watching his pleasure as he eats them up. Compared to my life in France where this whole process took hours, these meals are usually short-lived and to the point - remnants of our Protestant heritage no doubt.
During the many months of hospitalization I began to realize how important these cooking and serving rituals had become for me. When he was gone I struggled to find pleasure in making meals. When he was here I found myself unearthing old techniques I had learned in cookery school back in Paris in my early 20's.
Suddenly while perusing the carbonated fruit-drink section my mind left the pleasure of the present moment and inched ahead to the future - the valley of the shadow of death. I burst into tears just as Tad came around the corner with yogurts and other goodies.
"Oh honey what's wrong?" he asked.
"I'm just thinking that sometime soon I'll be in this store shopping and you won't be here anymore."
He nodded silently, hugged me and wiped away my tears with deep love while two teenage girls walked by saying "Awwww..." with real empathy and a total absence of any teenage snarkiness.
Not to sound too dramatic - this moment was a mini-enlightenment.
There I was steeping in this blissful food-shopping adventure with the Man-I-Love who was finally free of hospital rules, gowns, gloves and vageuly sadistic RN's withholding pain medication. It was just a beautiful moment to be alive enjoying the purchases of each taste. Then suddenly I let my brain - clearly my best friend and my worst enemy - imagine something not real at that moment, something in the future. And I went from being completely content to being full of sorrow and fear. Then just as suddenly Tad flashed me his loving smile and I went back to joy. With his whole body he said, "I see you". Finally total strangers witnessed and acknowledged our suffering.
Those three minutes encapsulate some of the most powerful lessons of my life: the pain I cause myself by not living in the moment, the joy I feel even in the midst of huge tragedy, the deep soothing that comes from being acknowledged in my raw honesty by my beloveds and the healing power of being witnessed in our humanity by strangers - who suddenly become human.
After I calmed down Tad and I separated then moved to the check-out counter where the young cashier smiled and said, "You guys having a good day?"
We looked at each other and in unison replied "Not bad, thank you."
Not only did I need to pack all of Tad's and my belongings, but I also needed to take my sweet, pain-riddled husband home to die. As I walked across the flawless Stanford lawns toward the hospital I found myself wondering where I would possibly find the energy to get myself through this tragic day.
But -- as my brain loves to forget -- life is rarely the way I think it will be.
The most difficult part of the day ended up being the waiting-game. Stanford took forever to do what they kept promising: finalize all of the discharge tasks. Planned for 2PM it actually happened at 7PM, a mere blink of an eye in Rigid-Institutional-Time but an eternity for someone with a death sentence eager to be home.
I discovered that the actual tasks of folding clothes, working with discharge staff, carrying food trays, fetching coffee were all quite soothing to me, pleasant even. However at one point I couldn't hold it anymore and my tears began to flow:
"I can't believe I am taking you home to die. This is too much for me. How did this happen?" I sat on the bed in a heap.
Tad looked at me with his gorgeous smile -- and a face of misunderstanding -- shaking his head and saying: "But that's not how I see it at all. I'm going home to live. Let's go live."
This waiting was nothing new. When the doctors first came by a few days earlier to deliver the bad news of the biopsy I was absent. Since the results were "complicated" they offered to come back at 1PM so I could be present. I was expecting the usual cancer-chemo, six-of-one, half-a-dozen of the other outcome but also knew it might not be good news. When I arrived at 1PM I notified the team and was told someone would be in shortly. That didn't happen. Each time I hit the call button the receptionist assured me that the oncologist was informed and would be there soon.
At 5:30 I went out to where I knew the doctors congregate and grabbed the first (no doubt unsuspecting) oncology team member, a tall, lanky Jewish-looking kid in his early 20's with expensive shoes beneath his white coat. I looked him in the furtive eyes and said: "I've been waiting four hours for the results of a life or death biopsy. I think it is highly unethical for you and your team to keep us waiting so long. Please do something about it now."
I must admit I was really grateful to see the Big Boss oncologist arrive five minutes later and equally grateful to hear his honesty -- something I had been seeking from big-shot doctors for months. I could see he and his lovely fellow were squirming as they told us that the leukemia was already active but the immune system just wasn't. They offered to treat again but told us it would probably be useless. The boss made some banal comments about living fully and enjoying the time left - only vaguely hiding his discomfort. When I told him I could see it wasn't easy for him he acquiesced and replied that he had this conversation "four or five times each week."
I asked him to describe to us what death from leukemia would look like. (It is in moments like these that I realize I am an optimist; I never really see disasters coming. Real frank black and white reality words -delivered with love- are what help me the most.) Much like my many friends who died of AIDS in the 80's and 90's he explained Tad may simply die of an infection that his leukemia-ridden body and the many anti-biotics can no longer overcome. Or because of the way the cancer weakens the circulatory system he may just have a brain hemorrhage and fall asleep - never to awaken. Unlike tumorous cancers however, the oncologist assured me, leukemia doesn't put pressure on your body in extremely painful ways.
He gave no indication of a time table.
Among our back-home tasks yesterday -including laying out pills, fixing the vacuum cleaner and unpacking-- was the simple gesture of filling the fridge with good stuff. I waited til dinner time when I know Trader Joe's is less busy and asked Tad what his wish-list was. He announced he was coming with me.
I suppose I shouldn't have been surprised. He had already jumped in his pick-up and gone to the hardware store for electrical tape to repair something. I began to get anxious when I saw that he wasn't coming back quickly enough. Images of the guys at the lumber company calling an ambulance to resuscitate him flashed through my mind. Then suddenly he came around the corner, the back of his red pick-up truck full of new plants and flowers he'd just bought at the adjacent garden center. Where he was getting the energy and feeling pain-free enough to do all this was a mystery to me. Just the day before he had been in a bed at Stanford Hospital buzzing again and again to get more pain relief.
At Trader Joe's we began filling up the cart with foods we rarely buy. It wasn't something we agreed on, everything just seemed appealing to us. Between UC being back in session and the surf season still active there were lots of young, half-dressed, cute things wandering around the store which, the usually mute Tad pointed out to me with relish. After I went through the frozen food section picking out our usual fare he insisted on going back to check. I went to the end of the aisle and watched him slowly walk along the giant freezer sinkholes carefully perusing each product with a smile. He came back with some kind of lemon/ginger-snap ice cream and fish sticks - things I would have never imagined buying for him.
Ironically Trader Joe's has played a key role in our couple. Just two blocks away from Tad's house - it's the little Ali-Baba cave I run to on a regular basis to make yummy meals for him - a devoutly non-culinary type. A big part of our love story has been me preparing meals and watching his pleasure as he eats them up. Compared to my life in France where this whole process took hours, these meals are usually short-lived and to the point - remnants of our Protestant heritage no doubt.
During the many months of hospitalization I began to realize how important these cooking and serving rituals had become for me. When he was gone I struggled to find pleasure in making meals. When he was here I found myself unearthing old techniques I had learned in cookery school back in Paris in my early 20's.
Suddenly while perusing the carbonated fruit-drink section my mind left the pleasure of the present moment and inched ahead to the future - the valley of the shadow of death. I burst into tears just as Tad came around the corner with yogurts and other goodies.
"Oh honey what's wrong?" he asked.
"I'm just thinking that sometime soon I'll be in this store shopping and you won't be here anymore."
He nodded silently, hugged me and wiped away my tears with deep love while two teenage girls walked by saying "Awwww..." with real empathy and a total absence of any teenage snarkiness.
Not to sound too dramatic - this moment was a mini-enlightenment.
There I was steeping in this blissful food-shopping adventure with the Man-I-Love who was finally free of hospital rules, gowns, gloves and vageuly sadistic RN's withholding pain medication. It was just a beautiful moment to be alive enjoying the purchases of each taste. Then suddenly I let my brain - clearly my best friend and my worst enemy - imagine something not real at that moment, something in the future. And I went from being completely content to being full of sorrow and fear. Then just as suddenly Tad flashed me his loving smile and I went back to joy. With his whole body he said, "I see you". Finally total strangers witnessed and acknowledged our suffering.
Those three minutes encapsulate some of the most powerful lessons of my life: the pain I cause myself by not living in the moment, the joy I feel even in the midst of huge tragedy, the deep soothing that comes from being acknowledged in my raw honesty by my beloveds and the healing power of being witnessed in our humanity by strangers - who suddenly become human.
After I calmed down Tad and I separated then moved to the check-out counter where the young cashier smiled and said, "You guys having a good day?"
We looked at each other and in unison replied "Not bad, thank you."
Thursday, August 25, 2011
a new phase
Yesterday I was really looking forward to getting back to the hospice and spending time with T, a thick-bearded, Harley-loving softie of a man whom I had fallen in love with just last week. Sadly when I arrived he was no longer verbal. In just a short week his brain cancer had silenced him.
Then as I was walking from the hospice to the weekly meditation place I love so much I found a huge multi-layered, flower-covered, ad-hoc sanctuary on one of my usual street corners. According to one of the cards on top a 23 year old girl who'd recently graduated college and moved to San Francisco -- her favorite -- was struck dead by a bus while crossing the street.
When I think about how fragile a human body is compared to say a MUNI bus I'm amazed that some of us live to be in our 80, or 90's.
Yesterday Tad made the decision to not continue chemo treatment. Clearly he will not make it to his 80's. He will probably not see 2012.
The oncologists conducted a bone marrow biopsy and have found lots of leukemia in his bone marrow and next to no healthy cells in his immune system. The chemo has wreaked havoc on his bones but the leukemia just keeps coming back - the strange tenacity of simple living organisms. The docs offered to treat with more chemotherapy but insisted any successful outcome is highly unlikely.
The truth is I have been yearning to go home with Tad for a long time now. I have been yearning to sit and watch TV with him, to cuddle with our cat, to prune flowers in the garden, to feel the love that has held us through so much.
The excruciating truth I have to live with is knowing we'll go home together but he'll leave the house on a stretcher no longer to shine his beautiful smile in my life.
And I hate that we have no choice in the matter.
My loving dad told me how much he has watched Tad's love transform me; how much more loving I have become since entering this relationship. Tad is easy to love. And somehow by loving him and being loved by him - I have learned to finally love myself.
So many people comment on how lucky we are to have this much love, what a rare thing it is. I can't bring myself to believe that. What I do believe - and how I find hope - is that love continues beyond physical bodies. And in deep love are strange powers and properties that remain a mystery to me.
Each time I've stumbled in life the solution has always been some form of "More love" or more accurately "Love more!"
May we all continue to "Love More" even when our hearts are lying on the floor aching from loss or the anticipation of loss.
Then as I was walking from the hospice to the weekly meditation place I love so much I found a huge multi-layered, flower-covered, ad-hoc sanctuary on one of my usual street corners. According to one of the cards on top a 23 year old girl who'd recently graduated college and moved to San Francisco -- her favorite -- was struck dead by a bus while crossing the street.
When I think about how fragile a human body is compared to say a MUNI bus I'm amazed that some of us live to be in our 80, or 90's.
Yesterday Tad made the decision to not continue chemo treatment. Clearly he will not make it to his 80's. He will probably not see 2012.
The oncologists conducted a bone marrow biopsy and have found lots of leukemia in his bone marrow and next to no healthy cells in his immune system. The chemo has wreaked havoc on his bones but the leukemia just keeps coming back - the strange tenacity of simple living organisms. The docs offered to treat with more chemotherapy but insisted any successful outcome is highly unlikely.
The truth is I have been yearning to go home with Tad for a long time now. I have been yearning to sit and watch TV with him, to cuddle with our cat, to prune flowers in the garden, to feel the love that has held us through so much.
The excruciating truth I have to live with is knowing we'll go home together but he'll leave the house on a stretcher no longer to shine his beautiful smile in my life.
And I hate that we have no choice in the matter.
My loving dad told me how much he has watched Tad's love transform me; how much more loving I have become since entering this relationship. Tad is easy to love. And somehow by loving him and being loved by him - I have learned to finally love myself.
So many people comment on how lucky we are to have this much love, what a rare thing it is. I can't bring myself to believe that. What I do believe - and how I find hope - is that love continues beyond physical bodies. And in deep love are strange powers and properties that remain a mystery to me.
Each time I've stumbled in life the solution has always been some form of "More love" or more accurately "Love more!"
May we all continue to "Love More" even when our hearts are lying on the floor aching from loss or the anticipation of loss.
Tuesday, August 16, 2011
los angeles
Early into this adventure we were told by the very first oncologist that we would have to choose either Stanford or UCSF as a follow-up hospital since only they could perform the lifesaving transplant Tad will need once he is in remission.
Thus we moved to UCSF where after a few months we discovered they would not be able to transplant Tad. He has a complication that means his transplant must be done within an experimental protocol.
Suddenly we found ourselves searching for hospitals with that particular protocol.
We called many of the major cancer centers in America. Our team at UCSF tried others. Only one cancer center in the US was willing to transplant Tad: Seattle.
That is why we agreed to go up there at the end of June in order to meet with the team and discuss how to make that happen. We found ourselves living the most surreal of realities when the morning of our meeting Tad told me we needed to call 911. He ended up being rushed to the very hospital that may be able to save his life - and then spent 16 days there.
But while we were there we also discovered some of the downsides to being at that hospital: Tad would have to establish fiscal residency in Washington. He would have to transfer his Medicare to Washington at the risk of going through a period of transition without insurance. The other risk would be losing his home in Santa Cruz - the most stable anchor in his world.
So it was with some relief that one of the oncologists at Stanford informed us that City of Hope Cancer Center in the northeast part of greater Los Angeles has two patients with the same medical history as Tad and are interested in conducting the protocol.
This afternoon they called Tad to set an appointment for an intake!
This is immense news for us. Tad's insurance would not have to be toyed with, because we would still be in California. LA is much closer to his blood family in Arizona than chilly Seattle. And the cost of living there is lower - an important point since it will no doubt be a six month stay for both of us.
It's a strange thing to be given this news at a time when everyone is in "wait and see" mode.
The doctors, the nurses all come into Tad's hospital room and we talk about the day's aches and pains. We discuss the swelling in his ankles, his appetite and the present pain regimen. Vital signs are analyzed and everyone agrees he's doing quite well.
What we don't talk about is the fact that a body can only take so many rounds of chemo; the fact that Tad's leukemia may just come back after all this pain.
More than anything I want these people to tell me my future, to tell us our future with absolute certainty. That is the one thing they cannot do. They can only tell us the next step to take.
The discomfort of that is palpable.
This morning -- before the phone call -- I arrived in Tad's room, sat down on the bed, took his hand and without words simply wept. He saw my face screw up and began to weep too. Together we sat in gentle silence holding hands and crying while looking into one another's eyes.
Sometimes our sorrow is so big it can't be kept at arm's length any longer.
When we were done we wiped our faces in silence, declared our love for one another and had a great lunch of real, all-American hamburgers and potato salad followed by a rich Mexican flan.
Hamburger, flan, love and tears. What more could I possibly need?
Thus we moved to UCSF where after a few months we discovered they would not be able to transplant Tad. He has a complication that means his transplant must be done within an experimental protocol.
Suddenly we found ourselves searching for hospitals with that particular protocol.
We called many of the major cancer centers in America. Our team at UCSF tried others. Only one cancer center in the US was willing to transplant Tad: Seattle.
That is why we agreed to go up there at the end of June in order to meet with the team and discuss how to make that happen. We found ourselves living the most surreal of realities when the morning of our meeting Tad told me we needed to call 911. He ended up being rushed to the very hospital that may be able to save his life - and then spent 16 days there.
But while we were there we also discovered some of the downsides to being at that hospital: Tad would have to establish fiscal residency in Washington. He would have to transfer his Medicare to Washington at the risk of going through a period of transition without insurance. The other risk would be losing his home in Santa Cruz - the most stable anchor in his world.
So it was with some relief that one of the oncologists at Stanford informed us that City of Hope Cancer Center in the northeast part of greater Los Angeles has two patients with the same medical history as Tad and are interested in conducting the protocol.
This afternoon they called Tad to set an appointment for an intake!
This is immense news for us. Tad's insurance would not have to be toyed with, because we would still be in California. LA is much closer to his blood family in Arizona than chilly Seattle. And the cost of living there is lower - an important point since it will no doubt be a six month stay for both of us.
It's a strange thing to be given this news at a time when everyone is in "wait and see" mode.
The doctors, the nurses all come into Tad's hospital room and we talk about the day's aches and pains. We discuss the swelling in his ankles, his appetite and the present pain regimen. Vital signs are analyzed and everyone agrees he's doing quite well.
What we don't talk about is the fact that a body can only take so many rounds of chemo; the fact that Tad's leukemia may just come back after all this pain.
More than anything I want these people to tell me my future, to tell us our future with absolute certainty. That is the one thing they cannot do. They can only tell us the next step to take.
The discomfort of that is palpable.
This morning -- before the phone call -- I arrived in Tad's room, sat down on the bed, took his hand and without words simply wept. He saw my face screw up and began to weep too. Together we sat in gentle silence holding hands and crying while looking into one another's eyes.
Sometimes our sorrow is so big it can't be kept at arm's length any longer.
When we were done we wiped our faces in silence, declared our love for one another and had a great lunch of real, all-American hamburgers and potato salad followed by a rich Mexican flan.
Hamburger, flan, love and tears. What more could I possibly need?
Thursday, August 11, 2011
eight more days
Tad has had one of the least painful rounds of inpatient chemo since his diagnosis 18 months ago.
Only in the last 48 hours has he begun to develop real GI complications and severe bone pain. During a couple previous hospitalizations he was in ICU well before this stage.
He has been doing activities on the computer, keeping up with friends, taking care of administrative tasks and still maintaining civilian clothes. The last couple days were the first in which he could not get out of bed, gear up with his space-age face-mask and walk to the cafeteria or adjacent atrium.
Internally the oncologists have done a bit of research and determined, after boring a hole in his hip bone, that they have "destroyed all the leukemia" - the initial goal.
This is good news.
But it is dampered by the fact that it may not persist once his immune system rebuilds itself.
I was frankly quite wary when he shared this with me and only felt a bit relieved a few days later when I had had the opportunity to speak with an oncologist myself.
This very warm woman explained to me that this was indeed a good thing and that as always we have to keep playing the waiting game to see what will happen long term.
Some of the options include having him do a second round of this chemo, having him receive a bone marrow transplant if the leukemia stays at bay or having him go home and call it quits if there is no real lasting remission.
The same day the team shared the good news with Tad they also said they'd been in touch with a reputed hospital in LA where a patient has nearly the same medical complications he has and where they may be willing to do a stem cell transplant. This would mean NOT moving to Seattle for six months, NOT having to leave his house in Santa Cruz and establish fiscal residency in WA for insurance reasons. The hospital staff have since called us twice asking for more medical information. We are still awaiting a final yes or no as to whether they can offer us this service.
In the meantime we have changed attending oncologists and the whole feel of the oncology team is different. This one is led by a German woman who smiles, makes eye contact and introduces herself by her first name. On her first day she introduced all the team by their first name - which feels more natural to me anyway since most of them are half my age. She asks questions and asks permission to do the next thing ("May I listen to your breathing?" "Do you mind if I lift up your shirt?").
The feeling in the room is diametrically opposed to her predecessor who was here when we first walked in. We feel heard and seen by these folks; we feel like we have allies.
Contrary to the previous guy who asked "Have you tried City of Hope in LA?" (the hokey name for the otherwise excellent cancer center), this team contacted City of Hope and were able to deliver good news.
My own form of pain goes in and out. As I sit in an empty house in a high-end suburb I become aware that my career is on hold, that I haven't had a vacation in a very long time, that I have no real community down here and feel disconnected. Rather than stopping to remember all of the people around the world holding me in my heart I flail, I look for things to do, I try to find an answer outside of myself.
Sitting down and remembering love is often the most potent thing I can do for myself. Yet I keep grasping for answers outside of me. The former is just not very sexy, it's too subtle, too simple. It lacks drama. It's a gentle glass of good wine compared to the strong shot of whiskey I get from calling friends to hear me bitch and moan, or spending three hours on Facebook til something attracts my eye and distracts my brain.
The sweet oncologist tells us Tad has about 8 more days in hospital. My busy mind wants to write the next sentence; tell the next part of the story but we don't know what that is. So for now I'll leave it at that: Tad will probably go home in about eight days.
Only in the last 48 hours has he begun to develop real GI complications and severe bone pain. During a couple previous hospitalizations he was in ICU well before this stage.
He has been doing activities on the computer, keeping up with friends, taking care of administrative tasks and still maintaining civilian clothes. The last couple days were the first in which he could not get out of bed, gear up with his space-age face-mask and walk to the cafeteria or adjacent atrium.
Internally the oncologists have done a bit of research and determined, after boring a hole in his hip bone, that they have "destroyed all the leukemia" - the initial goal.
This is good news.
But it is dampered by the fact that it may not persist once his immune system rebuilds itself.
I was frankly quite wary when he shared this with me and only felt a bit relieved a few days later when I had had the opportunity to speak with an oncologist myself.
This very warm woman explained to me that this was indeed a good thing and that as always we have to keep playing the waiting game to see what will happen long term.
Some of the options include having him do a second round of this chemo, having him receive a bone marrow transplant if the leukemia stays at bay or having him go home and call it quits if there is no real lasting remission.
The same day the team shared the good news with Tad they also said they'd been in touch with a reputed hospital in LA where a patient has nearly the same medical complications he has and where they may be willing to do a stem cell transplant. This would mean NOT moving to Seattle for six months, NOT having to leave his house in Santa Cruz and establish fiscal residency in WA for insurance reasons. The hospital staff have since called us twice asking for more medical information. We are still awaiting a final yes or no as to whether they can offer us this service.
In the meantime we have changed attending oncologists and the whole feel of the oncology team is different. This one is led by a German woman who smiles, makes eye contact and introduces herself by her first name. On her first day she introduced all the team by their first name - which feels more natural to me anyway since most of them are half my age. She asks questions and asks permission to do the next thing ("May I listen to your breathing?" "Do you mind if I lift up your shirt?").
The feeling in the room is diametrically opposed to her predecessor who was here when we first walked in. We feel heard and seen by these folks; we feel like we have allies.
Contrary to the previous guy who asked "Have you tried City of Hope in LA?" (the hokey name for the otherwise excellent cancer center), this team contacted City of Hope and were able to deliver good news.
My own form of pain goes in and out. As I sit in an empty house in a high-end suburb I become aware that my career is on hold, that I haven't had a vacation in a very long time, that I have no real community down here and feel disconnected. Rather than stopping to remember all of the people around the world holding me in my heart I flail, I look for things to do, I try to find an answer outside of myself.
Sitting down and remembering love is often the most potent thing I can do for myself. Yet I keep grasping for answers outside of me. The former is just not very sexy, it's too subtle, too simple. It lacks drama. It's a gentle glass of good wine compared to the strong shot of whiskey I get from calling friends to hear me bitch and moan, or spending three hours on Facebook til something attracts my eye and distracts my brain.
The sweet oncologist tells us Tad has about 8 more days in hospital. My busy mind wants to write the next sentence; tell the next part of the story but we don't know what that is. So for now I'll leave it at that: Tad will probably go home in about eight days.
Wednesday, August 3, 2011
stanford day 13
I'm sitting in my apartment in San Francisco while Tad is lying in a bed in the basement of Stanford Hospital.
This hospitalization has been tough on us but not for reasons one might imagine.
Tad is doing relatively well. Normally on day 13 of a chemo protocol he is really sick - (think profuse sweating, abundant diarrhea, lack of appetite, confusion, loss of weight, etc).
But he continues to wear his own clothes (impossible when you're really sick), takes walks to the nearby garden and atrium, doodles on his computer, and talks with friends and family in person or by skype. He has some difficulties with his GI track mostly a sore throat which makes talking a bit painful. But what is usually a roller coaster is feeling more like a fast ferris wheel.
He is on a highly technical unit. There is a zone in front of each room where guests suit up and glove up. If he leaves he must wear a high-tech hexa-mask. We never see the other patients because they are so sick behind closed doors. Most of them have a family member in their room with them full time (in part because hotels are so expensive in the wealthy Silicon Valley). I get brief glimpses of these family members during my runs to the kitchen for ice water, to reheat a meal or to get a soothing pop-sicle from the freezer.
In the evenings I return to a big empty house in a very tony neigborhood that is generously on loan to me by sweet friends who just inherited it (Yes you guessed it: someone just died in it and not much has budged since her corpse and the hospice team left several weeks ago).
The team relate to patients almost entirely on a pathology level: each one comes in and asks a litany of questions, usually a list of symptoms that he can endorse. In this case he doesn't endorse any of them because he's not having the long list of symptoms that usually occur.
I know this sounds like a good thing but there is a more painful insidious effect which has taken me a while to identify: in the same way a passing woman can be seen for only one thing by cat-calling construction workers or an army enlistee is only seen for one objective by a drill sergeant so we seem to be seen for only one thing, cancer symptoms.
Unlike other units we've been on caregivers don't ask us about our relationship, how long we've been together, where we're from or what we do as careers. Unlike other units they don't share pictures of their kids or tell stories about the outside world: their latest vacation, or the marathon that caused them to be late for work.
Tad has begun to get cranky and my fuse is so short I have little patience and empathy for his crankiness.
Yesterday a nurse's aid came in for the umpteenth time (all gowned up each time) and asked if he had peed in the last 7 hours! When he replied he would appreciate it if she could group her questions together so as not to interrupt him so often she turned to me "Has he urinated since 3 PM?". I hate it when people use the third person in front of someone) so I told her to ask him. She did and he simply responded "I"m not going to tell you." She walked away.
On my way out I spoke to someone from the nursing team about it explaining that we're feeling prickly, hoping to smooth any wrinkles this might have caused. She replied, "Oh is this his first round of chemo?" - enhancing my feeling of not being seen.
The next day while writing in my journal in the backyard of my suburban nest it hit me: I need someone to see all of me, or at least more of me. I need a witness to my story. More than that I need to know these caregivers understand my story so that they can make the best decisions possible (and not reproduce the mistakes others have made in the past).
If I'm feeling this way it's safe to assume Tad is too.
I immediately found a nearby church on Google maps and contacted a minister for support - (I checked to make sure they weren't a gay-bashing congregation). I called the social worker at the hospital and asked for an appointment. I then called the hospital chaplain and did the same.
"I need to talk with someone who can see me with more than a medical brain," I started each time
I shared between gulps of tears that we need to be seen, we need to be sure we have allies who "get us", who get "the big picture". We need people who don't just use 10% of their being to relate to us but also people who are able to bring in their heart, their feelings, their touch.
Amazingly outside of these two people there are no mental health professionals available to see patients with cancer. There are two art therapy volunteers but they are not allowed in the rooms of immune-compromised patients (anyone with a blood disorder like leukemia). There is a massage therapist for $30/half hour but she is not allowed to touch patients with low platelets (most people with leukemia chemo). I offered to hold a circle of family members in the family room twice per week so that we could share our stories for more than two minutes in the tiny kitchen. The social worker told me that was a bad idea; I can attend the once per month group she facilitates.
Ironically they both recognized this is a common complaint they hear - patients not feeling seen.
They did offer Lorazepam.
Last night I couldn't fall asleep in my comfy familiar San Francisco bed for reasons that made no sense to me. My last cup of coffee had been at 3PM - a safe margin for me. I found myself wearing a bathrobe, walking in circles and praying aloud to some unknown god to heal Tad this time, to take away the leukemic cells.
This round is being presented to us as the last option.
I grabbed some relics off the altar in my hallway -- a photo of my grams, a Buddha sculpture from Tibet, a candle, an American Indian bear-tooth from a medicine man in Northern Quebec. I called in my dead friends and ancestors: Stephen Yelvington, Melanie Querre, my grandmas. And I sat down in tears in the middle of my living room to invoke and distill into one spell every drop of love I've ever received in my fifty years of life: Heal Tad. Take this away. Make it stop.
At this point in my life I know very little about anything. I sometimes wonder who I think I am to want one life spared in a world that is so full of suffering.
But I know more than ever that love heals. I hope it can heal cells across time, across distance, across lives.
This hospitalization has been tough on us but not for reasons one might imagine.
Tad is doing relatively well. Normally on day 13 of a chemo protocol he is really sick - (think profuse sweating, abundant diarrhea, lack of appetite, confusion, loss of weight, etc).
But he continues to wear his own clothes (impossible when you're really sick), takes walks to the nearby garden and atrium, doodles on his computer, and talks with friends and family in person or by skype. He has some difficulties with his GI track mostly a sore throat which makes talking a bit painful. But what is usually a roller coaster is feeling more like a fast ferris wheel.
He is on a highly technical unit. There is a zone in front of each room where guests suit up and glove up. If he leaves he must wear a high-tech hexa-mask. We never see the other patients because they are so sick behind closed doors. Most of them have a family member in their room with them full time (in part because hotels are so expensive in the wealthy Silicon Valley). I get brief glimpses of these family members during my runs to the kitchen for ice water, to reheat a meal or to get a soothing pop-sicle from the freezer.
In the evenings I return to a big empty house in a very tony neigborhood that is generously on loan to me by sweet friends who just inherited it (Yes you guessed it: someone just died in it and not much has budged since her corpse and the hospice team left several weeks ago).
The team relate to patients almost entirely on a pathology level: each one comes in and asks a litany of questions, usually a list of symptoms that he can endorse. In this case he doesn't endorse any of them because he's not having the long list of symptoms that usually occur.
I know this sounds like a good thing but there is a more painful insidious effect which has taken me a while to identify: in the same way a passing woman can be seen for only one thing by cat-calling construction workers or an army enlistee is only seen for one objective by a drill sergeant so we seem to be seen for only one thing, cancer symptoms.
Unlike other units we've been on caregivers don't ask us about our relationship, how long we've been together, where we're from or what we do as careers. Unlike other units they don't share pictures of their kids or tell stories about the outside world: their latest vacation, or the marathon that caused them to be late for work.
Tad has begun to get cranky and my fuse is so short I have little patience and empathy for his crankiness.
Yesterday a nurse's aid came in for the umpteenth time (all gowned up each time) and asked if he had peed in the last 7 hours! When he replied he would appreciate it if she could group her questions together so as not to interrupt him so often she turned to me "Has he urinated since 3 PM?". I hate it when people use the third person in front of someone) so I told her to ask him. She did and he simply responded "I"m not going to tell you." She walked away.
On my way out I spoke to someone from the nursing team about it explaining that we're feeling prickly, hoping to smooth any wrinkles this might have caused. She replied, "Oh is this his first round of chemo?" - enhancing my feeling of not being seen.
The next day while writing in my journal in the backyard of my suburban nest it hit me: I need someone to see all of me, or at least more of me. I need a witness to my story. More than that I need to know these caregivers understand my story so that they can make the best decisions possible (and not reproduce the mistakes others have made in the past).
If I'm feeling this way it's safe to assume Tad is too.
I immediately found a nearby church on Google maps and contacted a minister for support - (I checked to make sure they weren't a gay-bashing congregation). I called the social worker at the hospital and asked for an appointment. I then called the hospital chaplain and did the same.
"I need to talk with someone who can see me with more than a medical brain," I started each time
I shared between gulps of tears that we need to be seen, we need to be sure we have allies who "get us", who get "the big picture". We need people who don't just use 10% of their being to relate to us but also people who are able to bring in their heart, their feelings, their touch.
Amazingly outside of these two people there are no mental health professionals available to see patients with cancer. There are two art therapy volunteers but they are not allowed in the rooms of immune-compromised patients (anyone with a blood disorder like leukemia). There is a massage therapist for $30/half hour but she is not allowed to touch patients with low platelets (most people with leukemia chemo). I offered to hold a circle of family members in the family room twice per week so that we could share our stories for more than two minutes in the tiny kitchen. The social worker told me that was a bad idea; I can attend the once per month group she facilitates.
Ironically they both recognized this is a common complaint they hear - patients not feeling seen.
They did offer Lorazepam.
Last night I couldn't fall asleep in my comfy familiar San Francisco bed for reasons that made no sense to me. My last cup of coffee had been at 3PM - a safe margin for me. I found myself wearing a bathrobe, walking in circles and praying aloud to some unknown god to heal Tad this time, to take away the leukemic cells.
This round is being presented to us as the last option.
I grabbed some relics off the altar in my hallway -- a photo of my grams, a Buddha sculpture from Tibet, a candle, an American Indian bear-tooth from a medicine man in Northern Quebec. I called in my dead friends and ancestors: Stephen Yelvington, Melanie Querre, my grandmas. And I sat down in tears in the middle of my living room to invoke and distill into one spell every drop of love I've ever received in my fifty years of life: Heal Tad. Take this away. Make it stop.
At this point in my life I know very little about anything. I sometimes wonder who I think I am to want one life spared in a world that is so full of suffering.
But I know more than ever that love heals. I hope it can heal cells across time, across distance, across lives.
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