One of the up sides of having ADD is my capacity to scan for and process lots of information. When I drive I tend to have my eye two or three steps ahead of my car. The down side of course is that I can be an impatient driver and riding with me can be pretty annoying. The best way I've found to slow down my mind is to stop and regularly meditate - but that's not easy when I'm buzzing past huge rigs at 75 MPH.
For nine days in mid-October Tad and I drove nearly 2000 miles to visit family and friends, to take in the beauty of the autumnal desert and to simply get away for a much needed vacation in Southern California and Arizona. The hidden goal that gave birth to the trip however was for him to say good-bye to members of his family of origin for perhaps the last time.
If all goes well the next few months will present Tad with a bone-marrow transplant (more realistically called a stem cell transplant) which may or may not rid him of cancer and may also kill him by replacing his immune system with someone else's. It's the most promising procedure for a long-term cure and the most fatal due to the many possible complications; the ultimate eye of the needle.
As we put more and more miles between us and the Bay Area I watched Tad and myself loosen up, laugh more, become curious about things around us. I watched us release the cumulative fears and obsessions we'd been building up around this phase of his treatment. I observed us as we temporarily let fade from our awareness the crazy-making fact that the ONE hospital offering the most promising clinical trial doesn't like Tad's insurance - or to be more specific doesn't like Tad's secondary insurance - the part that covers the 20% his other insurance doesn't cover.
Unlike many of my friends Tad is not without insurance; he actually has three different kinds of coverage! But after telling us they simply needed to speak to the insurer, the folks from the Seattle Cancer Center have now announced that they do not bill that insurer, or rather that they once did but they had bad luck so they'd rather not for the moment - the perfect response to make any level-headed person go bonkers.
In my attempt to make this road trip as relaxing as possible I decided to resist the insistent pull of my mind toward what was happening 300 yards ahead of our car and devised strategies on how I might possibly get around it. I decided to stop wondering why the person driving the light blue Chevrolet with Nevada license plates thinks it's okay to set up residency in the left lane and drive ten miles under the speed limit, keeping gentle pace with an 18 wheeler full of chickens. I know that if I focus on these things long enough my mind gets jittery, I feel some kind of mis-placed rage and I ultimately stop enjoying the beauty of the landscape, the music from the Ipod and the pleasure of driving in the open desert with my beloved.
The strategy I used for myself was taking a deep breath and simply repeating in my mind: "Just this". Not the baby blue chevy, not the 18-wheeler, not the question of whether we will get through LA before the bewitching rush hour deadline of 2:30 PM but...
just this...
just this....
just this.
It reminded me of a time when I was attending a silent retreat in Northern Quebec with American Indians. I actually fasted for ten days, and remained silent for four of those ten days while participating in various native American rituals. One day I took off for a long hike in silence and discovered a gurgling mountain river. I walked along side it and became so fascinated by it that I lost the path home through the thick woods. But I knew that if I just followed the river downstream it would take me back to a road that would take me back to my camp. Standing on one of the giant boulders looking downstream my heart dropped since I could see no possible road map. Much to my chagrin the rocks were not scattered in a terribly organized fashion! Yet I had no choice.
What I discovered was that all I had to do was focus on getting to the next rock and once I got to there, the next one seemed obvious. One rock at a time I made way back home. That rock-jumping experience was one of the big take-aways from my tree-huggers, touchy-feely retreat: take life one stone at a time and don't get too obsessed about the big picture.
Just this.
I don't know what the outcome of our present medico-insurance dilemma will be. I don't know if we'll get into the study in Seattle (we have an appointment on Friday to discuss it) or if we'll remain in San Francisco and get the less promising (but less fatal) autologous transplant in which the doctors will give Tad some of his own previously extracted immune stem cells.
When people or greeting cards tell me to "simply trust" - I admit that my first thought is "trust what?" or rather "Trust WHAT!?!?!?"
I can't really find the way to trust some benevolent god or angels or universal flow.
But what is clear to me is that I CAN trust "just this". I can trust that each day I have what it takes and Tad has what it takes to stay connected and remain hopeful for that day.
Not surprisingly our friends and family weren't really eager to say the ultimate good-bye to Tad, nor were we, truth be told. Instead of being a trip about sorrow it was a simple road trip about life, about saguaro cacti and giant orange boulders, about hummingbirds and mediocre novels, popcorn in front of the TV with family, barbecue ribs and apple orchard forays, chatting with friends and enjoying the journey.
It was a trip about just this.
[EPILOGUE: Since first posting this Tad had a bone marrow biopsy - a lovely procedure in which they bore a hole in his hip bone to take out a sample. It indicated some cancer activity in the blood meaning it's best that he get more chemo before getting a transplant. We called Seattle to see if we should come or stay and they recommended we come up after this next round of chemo. By then they will have had time to find a donor match as well. Deeeeeep breath....]
Tuesday, November 2, 2010
Friday, September 3, 2010
last night's dream
(Note: I wrote this blog early into Tad's chemo on Sept 3. His hospital stay is almost over and it was a rough ride. An infection migrated to his kidneys and liver around day 10 rendering him weak, confused, aggressive and -fortunately- mostly amnesic. He is better now. I discovered in that period that when my fear gets the biggest - I stop communicating with the outside world. Good to know for the future...)
Last night I had a lengthy dream about a former lover of mine and myself. We were involved in a complex adventure to get out of a country. Our escape plan included border patrol, trains, walls to climb and buildings to skirt. Our plan was genius and --it was quite clear to me-- would get us around and beyond all these obstacles. But in the end for reasons I couldn't grasp he decided to stay on the train just as we were supposed to hop off. He knew he was sick and that our escape plan would exact too much of a toll on his body. I wept as the train rolled away.
But shortly after hopping off, I suddenly found myself back in my home country in a fancy restaurant trying to explain my sorrow to acquaintances who just didn't understand.
Tad is back in the hospital for round three of chemotherapy - politely called "consolidation".
This is a good thing we're told: round two managed to put him into remission and consolidation will prepare him for the grand slam, a bone marrow transplant. The not so good new is we're also told that given Tad's particular make-up this final and necessary round can only be conducted in Seattle, Washington. For those unlucky souls who have yet to discover the beauty of the Pacific Coast, Seattle is about 15 hours by car from San Francisco.
Thus yesterday we found ourselves calling there to find out about housing, length of stay, prices, to try to understand what is covered by Tad's insurance and more importantly what is not. My mind began wandering as some sweet woman explained to me how certain insurances crossed state lines and others didn't. Within a short time my head was spinning with uncertainty. It's not impossible by any means but it may mean an expensive stay, for at least two months, away from our community, in a city we don't know. It's not clear to me how much I'll be able to stay there while Tad is undergoing all of this and how much I'll need to be in San Francisco.
Tad once told me (wisely) that it's important to look at the past, but just as important not to stare. As we cross this strange leukemia desert together I see that the idiom holds true for the future as well. It's important to look ahead and see the goal in the distance but it's equally important to come back quickly to the present, to our feet in the sand, the breeze on our skin, to one foot in front of the other.
What my dream reminded me of, a notion I like to leave out of my everyday thinking, is the painful idea that we may not get to our destination together. Cancer has already separated us in a way; he has it in his body, I have it in my heart. Occasionally this reality leaves us with a gulf of misunderstanding at times hard to overcome.
Then we have moments like the one we had two nights ago in which I put his hospital bed up high, turned down the lights, pulled the curtain to block out glances from passersby, put on Brian Eno's Airport Music and gave him a delicious massage to try to ease the throbbing headaches he's been experiencing this time around. Afterward we sat holding hands, watching a brilliant Swedish thriller that had me gasping like a school girl. In those moments we remember that we are still side by side in this journey, just living it from different angles.
In the final scene of last night's dream I get up from the table to go the bathroom only to discover that the toilet is in the middle of a vast, bustling, 19th century dining room full of elegant diners, all of whom can see me doing my business.
A lovely metaphor.
Here I sit with those normally-not-seen parts of my life in full view: at times I cry on the subway or while shopping for my weekly groceries. The good news is I no longer hear those old playground voices: "Boys don't cry", "Be strong", "What will people think?" I just sit and do my business.
It's just life folks. Go back to your meals.
Last night I had a lengthy dream about a former lover of mine and myself. We were involved in a complex adventure to get out of a country. Our escape plan included border patrol, trains, walls to climb and buildings to skirt. Our plan was genius and --it was quite clear to me-- would get us around and beyond all these obstacles. But in the end for reasons I couldn't grasp he decided to stay on the train just as we were supposed to hop off. He knew he was sick and that our escape plan would exact too much of a toll on his body. I wept as the train rolled away.
But shortly after hopping off, I suddenly found myself back in my home country in a fancy restaurant trying to explain my sorrow to acquaintances who just didn't understand.
Tad is back in the hospital for round three of chemotherapy - politely called "consolidation".
This is a good thing we're told: round two managed to put him into remission and consolidation will prepare him for the grand slam, a bone marrow transplant. The not so good new is we're also told that given Tad's particular make-up this final and necessary round can only be conducted in Seattle, Washington. For those unlucky souls who have yet to discover the beauty of the Pacific Coast, Seattle is about 15 hours by car from San Francisco.
Thus yesterday we found ourselves calling there to find out about housing, length of stay, prices, to try to understand what is covered by Tad's insurance and more importantly what is not. My mind began wandering as some sweet woman explained to me how certain insurances crossed state lines and others didn't. Within a short time my head was spinning with uncertainty. It's not impossible by any means but it may mean an expensive stay, for at least two months, away from our community, in a city we don't know. It's not clear to me how much I'll be able to stay there while Tad is undergoing all of this and how much I'll need to be in San Francisco.
Tad once told me (wisely) that it's important to look at the past, but just as important not to stare. As we cross this strange leukemia desert together I see that the idiom holds true for the future as well. It's important to look ahead and see the goal in the distance but it's equally important to come back quickly to the present, to our feet in the sand, the breeze on our skin, to one foot in front of the other.
What my dream reminded me of, a notion I like to leave out of my everyday thinking, is the painful idea that we may not get to our destination together. Cancer has already separated us in a way; he has it in his body, I have it in my heart. Occasionally this reality leaves us with a gulf of misunderstanding at times hard to overcome.
Then we have moments like the one we had two nights ago in which I put his hospital bed up high, turned down the lights, pulled the curtain to block out glances from passersby, put on Brian Eno's Airport Music and gave him a delicious massage to try to ease the throbbing headaches he's been experiencing this time around. Afterward we sat holding hands, watching a brilliant Swedish thriller that had me gasping like a school girl. In those moments we remember that we are still side by side in this journey, just living it from different angles.
In the final scene of last night's dream I get up from the table to go the bathroom only to discover that the toilet is in the middle of a vast, bustling, 19th century dining room full of elegant diners, all of whom can see me doing my business.
A lovely metaphor.
Here I sit with those normally-not-seen parts of my life in full view: at times I cry on the subway or while shopping for my weekly groceries. The good news is I no longer hear those old playground voices: "Boys don't cry", "Be strong", "What will people think?" I just sit and do my business.
It's just life folks. Go back to your meals.
Thursday, July 15, 2010
words
My motto lately has been "More silence, fewer words". I've actually stopped my own psychotherapy and begun working with a meditation coach. I see now that this has also impacted my blog.
The last three weeks have been mostly about sitting uncomfortably with Tad's immune system at Zero - the goal of chemo for leukemia. Then waiting for it to rebuild itself.
The first phase lasted a good 12 days, the second took about 3!
During these times of waiting it is very tempting to fill the wait with all kinds of words/thoughts/scenarios. I have found that the very best way for me to go through this is one day at a time allowing myself to only have thoughts and feelings about what is actually in front of me and not my scary fantasies.
Last night, quite unpleasantly, the staff sent us hiking. We no longer qualified for the more specialized-care bed of a chemo patient and were sent to the lower realms of the liver-transplant folks which was so calm it looks like it's about to go out of business. Tad has actually been on the 14th floor of a unit which has its HQ on the 11th floor but because they don't have enough beds they borrow 10 rooms from the 11th floor.
The highlight of the 30 days in hospital was a few hours of birthday party in the "Solarium" (think big corner office with lots of windows and ugly furniture) which we managed to turn into something almost warm and welcoming. Tad got special permission to get off the ward as long as he wore a face mask between the two worlds. Sweet friends came with cards, gifts and hugs.
The other highlight was actually a darker moment. Around day 10 we discovered that contrary to what we had been told, this was not round 2 of 3 but instead round 2 of 4. It seems that the misunderstanding stems from the previous doctor's declaration of remission being a bit premature. Apparently further data came back indicating that Tad's cancer wasn't entirely in remission. Thus this last round of chemo wass intended to eradicate it as much as possible - the absolute prerequisite before doing the "transplant" that will hopefully keep him cancer-free.
This "transplant" consists in giving Tad an immune stimulant in order to build up his immune system into a mega-immune system. At that point they will put him on a sort of dialysis machine and extract his life-giving stem cells from his blood. These will be frozen then re-injected into his body after Round 4 of chemo. They are the seedlings that are meant to keep him cancer free.
In essence the procedure has two basic principles: 1 - eradicate all immune system good and bad several times and let the good rebuild itself hopefully without the bad and 2 - give the good cells an extra boost by fertilizing them with your own previously produced good stuff.
We will know in about 2 weeks if Tad has achieved remission - this will be based on the results of a bone marrow biopsy to be conducted in 10-14 days. If he doesn't hit remission the doctors will elaborate a second strategy.
In the meantime we return to the slow sweet life of Santa Cruz: kitty, gardens, neighbors, friends, walks along the ocean, breakfasts in Seabright.
This stay will also include the highly-anticipated visit of my 13 year old godson and his parents from Bordeaux. He's looking forward to hanging out with Tad and me (and riding the rides at the Boardwalk!)
The last three weeks have been mostly about sitting uncomfortably with Tad's immune system at Zero - the goal of chemo for leukemia. Then waiting for it to rebuild itself.
The first phase lasted a good 12 days, the second took about 3!
During these times of waiting it is very tempting to fill the wait with all kinds of words/thoughts/scenarios. I have found that the very best way for me to go through this is one day at a time allowing myself to only have thoughts and feelings about what is actually in front of me and not my scary fantasies.
Last night, quite unpleasantly, the staff sent us hiking. We no longer qualified for the more specialized-care bed of a chemo patient and were sent to the lower realms of the liver-transplant folks which was so calm it looks like it's about to go out of business. Tad has actually been on the 14th floor of a unit which has its HQ on the 11th floor but because they don't have enough beds they borrow 10 rooms from the 11th floor.
The highlight of the 30 days in hospital was a few hours of birthday party in the "Solarium" (think big corner office with lots of windows and ugly furniture) which we managed to turn into something almost warm and welcoming. Tad got special permission to get off the ward as long as he wore a face mask between the two worlds. Sweet friends came with cards, gifts and hugs.
The other highlight was actually a darker moment. Around day 10 we discovered that contrary to what we had been told, this was not round 2 of 3 but instead round 2 of 4. It seems that the misunderstanding stems from the previous doctor's declaration of remission being a bit premature. Apparently further data came back indicating that Tad's cancer wasn't entirely in remission. Thus this last round of chemo wass intended to eradicate it as much as possible - the absolute prerequisite before doing the "transplant" that will hopefully keep him cancer-free.
This "transplant" consists in giving Tad an immune stimulant in order to build up his immune system into a mega-immune system. At that point they will put him on a sort of dialysis machine and extract his life-giving stem cells from his blood. These will be frozen then re-injected into his body after Round 4 of chemo. They are the seedlings that are meant to keep him cancer free.
In essence the procedure has two basic principles: 1 - eradicate all immune system good and bad several times and let the good rebuild itself hopefully without the bad and 2 - give the good cells an extra boost by fertilizing them with your own previously produced good stuff.
We will know in about 2 weeks if Tad has achieved remission - this will be based on the results of a bone marrow biopsy to be conducted in 10-14 days. If he doesn't hit remission the doctors will elaborate a second strategy.
In the meantime we return to the slow sweet life of Santa Cruz: kitty, gardens, neighbors, friends, walks along the ocean, breakfasts in Seabright.
This stay will also include the highly-anticipated visit of my 13 year old godson and his parents from Bordeaux. He's looking forward to hanging out with Tad and me (and riding the rides at the Boardwalk!)
Friday, June 25, 2010
life at UCSF
It's a good thing when one doesn't have much to report about living with cancer.
A really good thing.
Life in captivity at UCSF has proven to be much better than at CPMC our previous hospital.
Staff are just as competent (as far as we non-cancer specialists can tell) but they are also more multi-dimensioned, more human. They share with us little bits about themselves and are willing to have real conversations that go beyond white blood cell chat and platelet babble.
Karen showed us her tattoos, Angie told us about her house in Hawaii and the incredible hibiscus she found, Ramella told us how she misses the East Coast summer evenings.
They also have one more level of care that was lacking at the previous hospital. In essence Tad's care was in the hand of a brilliant CEO who appeared for five minutes at the end of every day and pulled all the strings in his absence. He was prompt, business-like, cordial but not warm. During the day the only non-nursing person we saw were interns who seemed to be precocious 16 year olds who regularly replied "I don't know, I'll check with Dr Baron."
At UCSF we never see our CEO and we never see the interns but we have an "attending" physician who's a grown up, proper oncologist who visits twice a day and is in contact with said CEO. He too is a clearly a geek and it pains me to see what a hard time he has making eye contact while conversing with us but he's willing to sit, to talk, to answer tough questions. Once he even revealed a bit about himself and his family.
Just as frequently we see Nurse Practitioners who also know a lot about the medicine and can have the all-important power to prescribe. They are a funny lot but the recipe seems quite simple: picture a physician, take away all the narcissism and add a heart. Voila.
Another subtle difference but an important one is the way we are recognized as a couple. The previous hospital was by no means uncomfortable with us being gay but it was simply tolerated. Here staff purposefully support us, openly express care for us as a family, regularly inquire about us as a loving unit worthy of respect and, dare I say, celebration.
To add a cherry to the cake we know several people who work at UCSF so it's quite sweet to have old friends pop in and say hello, lie down on the beds with us and watch some TV or bring us yummy stuff from the cafe.
The next few days will be the hardest. Tad's immune system is slowly disappearing because of the chemo. The last, most aggressive LEJ was given to him on Tuesday. LEJ is Tad's name for it: Leukemia Eradication Juice (I came up with Leukemia Obliteration and Vivacity Enhancing Tonic ie L.O.V.E. Tonic but Tad thought that was way too touchy-feely). On that day a nurse had to be present all day in case his vitals plummeted from the toxicity of the Juice. For the first time we saw them bring in a bottle using ALL the precautions (mask, gown, double gloves!). The worst thing he experienced was a throbbing headache.
What is clear to us now is that when Tad arrived for Round One, unbenownst to us, his immune system was already shot through with leukemia. His whole experience of chemo was far more complicated by multiple symptoms, none of which has reared its ugly head this time around. He will no doubt hit the low point in about three days (this is called the Nadir which makes me smile and think of Ralph every time I hear it).
As I write this I wonder how much his physical state coupled with our emotional states might have had an effect on these professional relationships. Perhaps the first team, like us, was far more concerned about Tad's death and simply didn't want to get too personal. Today when people walk into his room they find the two of us mostly relaxed, openly loving, reading, writing, watching TV, giggling, usually only crying when cards and other expressions of love arrive. The specter of his death seems to have taken a step or two back and we're all breathing a little more freely for it.
A really good thing.
Life in captivity at UCSF has proven to be much better than at CPMC our previous hospital.
Staff are just as competent (as far as we non-cancer specialists can tell) but they are also more multi-dimensioned, more human. They share with us little bits about themselves and are willing to have real conversations that go beyond white blood cell chat and platelet babble.
Karen showed us her tattoos, Angie told us about her house in Hawaii and the incredible hibiscus she found, Ramella told us how she misses the East Coast summer evenings.
They also have one more level of care that was lacking at the previous hospital. In essence Tad's care was in the hand of a brilliant CEO who appeared for five minutes at the end of every day and pulled all the strings in his absence. He was prompt, business-like, cordial but not warm. During the day the only non-nursing person we saw were interns who seemed to be precocious 16 year olds who regularly replied "I don't know, I'll check with Dr Baron."
At UCSF we never see our CEO and we never see the interns but we have an "attending" physician who's a grown up, proper oncologist who visits twice a day and is in contact with said CEO. He too is a clearly a geek and it pains me to see what a hard time he has making eye contact while conversing with us but he's willing to sit, to talk, to answer tough questions. Once he even revealed a bit about himself and his family.
Just as frequently we see Nurse Practitioners who also know a lot about the medicine and can have the all-important power to prescribe. They are a funny lot but the recipe seems quite simple: picture a physician, take away all the narcissism and add a heart. Voila.
Another subtle difference but an important one is the way we are recognized as a couple. The previous hospital was by no means uncomfortable with us being gay but it was simply tolerated. Here staff purposefully support us, openly express care for us as a family, regularly inquire about us as a loving unit worthy of respect and, dare I say, celebration.
To add a cherry to the cake we know several people who work at UCSF so it's quite sweet to have old friends pop in and say hello, lie down on the beds with us and watch some TV or bring us yummy stuff from the cafe.
The next few days will be the hardest. Tad's immune system is slowly disappearing because of the chemo. The last, most aggressive LEJ was given to him on Tuesday. LEJ is Tad's name for it: Leukemia Eradication Juice (I came up with Leukemia Obliteration and Vivacity Enhancing Tonic ie L.O.V.E. Tonic but Tad thought that was way too touchy-feely). On that day a nurse had to be present all day in case his vitals plummeted from the toxicity of the Juice. For the first time we saw them bring in a bottle using ALL the precautions (mask, gown, double gloves!). The worst thing he experienced was a throbbing headache.
What is clear to us now is that when Tad arrived for Round One, unbenownst to us, his immune system was already shot through with leukemia. His whole experience of chemo was far more complicated by multiple symptoms, none of which has reared its ugly head this time around. He will no doubt hit the low point in about three days (this is called the Nadir which makes me smile and think of Ralph every time I hear it).
As I write this I wonder how much his physical state coupled with our emotional states might have had an effect on these professional relationships. Perhaps the first team, like us, was far more concerned about Tad's death and simply didn't want to get too personal. Today when people walk into his room they find the two of us mostly relaxed, openly loving, reading, writing, watching TV, giggling, usually only crying when cards and other expressions of love arrive. The specter of his death seems to have taken a step or two back and we're all breathing a little more freely for it.
Friday, June 18, 2010
Same-same but different
It’s been four days since Tad and I stepped back into a hospital again – this time for Round Two of three month-long chemo sessions.
Many things are familiar: a button to push when you need help, a functional box where no matter what you do the furniture never quite flows, people coming and going all day monitoring what goes in and out of his body, oh so sweet nursing staff and slightly geeky, brilliant medical staff.
But things are also quite different.
Yes we are in a new hospital with new rules (for instance they don’t want me to pee in his toilet for fear the toxins he’s urinating might splash up and get on my skin!). Yes the view is less fabulous (we look out on a massive eucalyptus - covered hill with only the top of Sutro Tower as a visual distraction). Yes the names and faces are all brand new (somehow their oncologists seem a bit more capable of empathy and relatedness).
But what is mostly different is us.
Unlike the first hospitalization which started with Tad quite sick from a sudden bout with pneumonia which luckily clued us in to the fact that his white blood cells were rapidly turning into Borgs, this time around Tad is beaming with health. Two days before being admitted we were working hard in the yard, he was cleaning the garage, schlepping the green trash cans, porting heavy bags of mulch, digging and planting new plants. He was eating well and actively preparing for the one month absence. After a few days of struggling with depression in the beginning he had had the realization that he needed to stay busy and connected during his time home. And it worked like a charm.
It is not til now that I see how much the pain from the pneumonia (and some minor surgery he’d had two days previously) had profoundly affected the way he experienced his first round of chemo. It also deeply impacted me since there seems to be a direct connection between his experiencing pain and my squirming like a school girl, wanting to accost the first medically-inclined person who goes by to make it all go away NOW!
The down side, as he pointed out yesterday, is that he has to go through chemo with his eyes wide open this time, none of that slightly dulling experience of major analgesics to keep a gentle veil between him and reality.
We’re also different in that we know what to expect this time unlike the first round when every cough or spike in fever appeared– in my fearful brain—like the announcement of the last days.
I suppose the most obvious way we are different –and words suddenly fail me -- is that somehow we are perhaps more present to daily life.
The gentle rhythm we had developed during our one-month break seems to have a lasting effect on our life today. We seem closer to our tears and our laughter comes more easily. We are more loving, more tactile, more peaceful. We seem to be grounded in our love in a palpable way.
Our squabbles are brief and almost warm – like when Tad insisted on stopping at Kohl’s to buy new pajama bottoms during our frantic drive from Santa Cruz while I was dead-set on trying to get to the hospital at the agreed-upon time I had painfully extracted from the charge nurse.
(For those who like to know how stories end: We only arrived a half hour late after rushing by my place and miraculously finding parking IN FRONT of the hospital. But by then I was so agitated that I managed to lash out at the young man in Admissions who grunted his greeting at us and then again at the nurse who put us in a room with a loud, angry, middle-aged man who wouldn’t turn down his BLARING gun show on TV and complained loudly because we wanted to turn on the light. Fortunately they kindly moved Tad to his own room.)
If all goes well Tad will be out of the hospital on Bastille Day – all ready for another month of R & R and a visit from my 13 year old godson from Bordeaux.
In the meantime please call Tad now and then (415-514-5413), skype him (thaddeus67) or send him a card (Tad Crandall, Rm 1404, UCSF, 505 Parnassus Box 0290, SF, CA, 94143-0290).
Despite Luke Wilson's promises and the extra thirty bucks a month we both pay for the super fast 3G network, we can’t receive a single call on our cellphones in the hospital.
Many things are familiar: a button to push when you need help, a functional box where no matter what you do the furniture never quite flows, people coming and going all day monitoring what goes in and out of his body, oh so sweet nursing staff and slightly geeky, brilliant medical staff.
But things are also quite different.
Yes we are in a new hospital with new rules (for instance they don’t want me to pee in his toilet for fear the toxins he’s urinating might splash up and get on my skin!). Yes the view is less fabulous (we look out on a massive eucalyptus - covered hill with only the top of Sutro Tower as a visual distraction). Yes the names and faces are all brand new (somehow their oncologists seem a bit more capable of empathy and relatedness).
But what is mostly different is us.
Unlike the first hospitalization which started with Tad quite sick from a sudden bout with pneumonia which luckily clued us in to the fact that his white blood cells were rapidly turning into Borgs, this time around Tad is beaming with health. Two days before being admitted we were working hard in the yard, he was cleaning the garage, schlepping the green trash cans, porting heavy bags of mulch, digging and planting new plants. He was eating well and actively preparing for the one month absence. After a few days of struggling with depression in the beginning he had had the realization that he needed to stay busy and connected during his time home. And it worked like a charm.
It is not til now that I see how much the pain from the pneumonia (and some minor surgery he’d had two days previously) had profoundly affected the way he experienced his first round of chemo. It also deeply impacted me since there seems to be a direct connection between his experiencing pain and my squirming like a school girl, wanting to accost the first medically-inclined person who goes by to make it all go away NOW!
The down side, as he pointed out yesterday, is that he has to go through chemo with his eyes wide open this time, none of that slightly dulling experience of major analgesics to keep a gentle veil between him and reality.
We’re also different in that we know what to expect this time unlike the first round when every cough or spike in fever appeared– in my fearful brain—like the announcement of the last days.
I suppose the most obvious way we are different –and words suddenly fail me -- is that somehow we are perhaps more present to daily life.
The gentle rhythm we had developed during our one-month break seems to have a lasting effect on our life today. We seem closer to our tears and our laughter comes more easily. We are more loving, more tactile, more peaceful. We seem to be grounded in our love in a palpable way.
Our squabbles are brief and almost warm – like when Tad insisted on stopping at Kohl’s to buy new pajama bottoms during our frantic drive from Santa Cruz while I was dead-set on trying to get to the hospital at the agreed-upon time I had painfully extracted from the charge nurse.
(For those who like to know how stories end: We only arrived a half hour late after rushing by my place and miraculously finding parking IN FRONT of the hospital. But by then I was so agitated that I managed to lash out at the young man in Admissions who grunted his greeting at us and then again at the nurse who put us in a room with a loud, angry, middle-aged man who wouldn’t turn down his BLARING gun show on TV and complained loudly because we wanted to turn on the light. Fortunately they kindly moved Tad to his own room.)
If all goes well Tad will be out of the hospital on Bastille Day – all ready for another month of R & R and a visit from my 13 year old godson from Bordeaux.
In the meantime please call Tad now and then (415-514-5413), skype him (thaddeus67) or send him a card (Tad Crandall, Rm 1404, UCSF, 505 Parnassus Box 0290, SF, CA, 94143-0290).
Despite Luke Wilson's promises and the extra thirty bucks a month we both pay for the super fast 3G network, we can’t receive a single call on our cellphones in the hospital.
Saturday, May 29, 2010
home... with a glimpse of the future
It seems, when one has cancer, there is actually something really positive about medical staff coming and going all day long, poking and prodding, checking and verifying this or that.
We both thought that having Tad comfortably back in his home would be the healthiest possible thing for him.
But sitting at home, with post-chemo fatigue and knowing in a couple weeks it will be back to chemo hell again, makes it hard to really engage in life fully.
It seems easier for me than for Tad. I can whip up a daily list of things to do in a heart beat. I can keep my nose on my list and fill my days so that by evening I feel a sense of accomplishment. Clearly right now that's tough for him. The usual pleasures of gardening, going to movies, shopping and doodling on the computer have lost their appeal. And seeing him like this feeds my own fears that somehow it will hasten his death.
Curiously this is the opposite of our dynamic at the hospital where I tend to be the one feeling glum, goal-less and prone to fear while he - in the thick of the action - seems to be more upbeat, even on the most hellish diarrhea/fever/shakes/chemo days.
He will be back in the hospital in about two weeks. This time it will be at UCSF where we have already met the new oncologist, Dr Thomas Martin.
He laid out the plan for the next stages of treatment:
- One month in the hospital for a second round of chemo starting mid-June,
- Most of July at home for rest,
- Most of August in the hospital again for a third round of chemo plus a bone marrow transfusion - which may have to be done in LA,
- Most of September at home.
He was cautious to offer us statistics, possibility of survival, etc but he did hold some hope. He was cordial, purposeful, and visibly quite popular.
In the waiting room, unlike at the previous more posh hospital, we were able to meet with other people with leukemia. Because UCSF is THE leukemia center in the Bay Area people come from all over to get care there. Next to us was a 23 year old guy from Modesto. His mom explained he'd just finished recuperating from a bone marrow transfusion. He looked great.
This new oncologist explained the "remission" we've been so excited about has basically just got us to about one third of our goal. His job is to take us the other two thirds of the trip. He also explained that the original genetic information we'd received about this particular form of leukemia was incomplete. Further studies have shown that in fact Tad's cancer falls in the most difficult to cure camp of the three types.
Needless to say - we came home from this first encounter with a new doc feeling both hopeful and yet quite beleaguered and weepy.
Tad asked that I spend more time with him in Santa Cruz where I am enjoying the warm days (81 compared to 67 in SF) and doting on the vegetable garden which various friends lovingly kept on track during the last round of chemo. Since I am focused on preparing for the boards i.e. studying - it's easy for me to do.
The good news is we have to time to prepare for the next rounds. If you are willing to help out by being on a team of people who take care of Tad's cat, garden and house (and sometimes his husband) during the hospital stints please let me know. We hope to get a group of folks organized in SC who can share the burden.
We both thought that having Tad comfortably back in his home would be the healthiest possible thing for him.
But sitting at home, with post-chemo fatigue and knowing in a couple weeks it will be back to chemo hell again, makes it hard to really engage in life fully.
It seems easier for me than for Tad. I can whip up a daily list of things to do in a heart beat. I can keep my nose on my list and fill my days so that by evening I feel a sense of accomplishment. Clearly right now that's tough for him. The usual pleasures of gardening, going to movies, shopping and doodling on the computer have lost their appeal. And seeing him like this feeds my own fears that somehow it will hasten his death.
Curiously this is the opposite of our dynamic at the hospital where I tend to be the one feeling glum, goal-less and prone to fear while he - in the thick of the action - seems to be more upbeat, even on the most hellish diarrhea/fever/shakes/chemo days.
He will be back in the hospital in about two weeks. This time it will be at UCSF where we have already met the new oncologist, Dr Thomas Martin.
He laid out the plan for the next stages of treatment:
- One month in the hospital for a second round of chemo starting mid-June,
- Most of July at home for rest,
- Most of August in the hospital again for a third round of chemo plus a bone marrow transfusion - which may have to be done in LA,
- Most of September at home.
He was cautious to offer us statistics, possibility of survival, etc but he did hold some hope. He was cordial, purposeful, and visibly quite popular.
In the waiting room, unlike at the previous more posh hospital, we were able to meet with other people with leukemia. Because UCSF is THE leukemia center in the Bay Area people come from all over to get care there. Next to us was a 23 year old guy from Modesto. His mom explained he'd just finished recuperating from a bone marrow transfusion. He looked great.
This new oncologist explained the "remission" we've been so excited about has basically just got us to about one third of our goal. His job is to take us the other two thirds of the trip. He also explained that the original genetic information we'd received about this particular form of leukemia was incomplete. Further studies have shown that in fact Tad's cancer falls in the most difficult to cure camp of the three types.
Needless to say - we came home from this first encounter with a new doc feeling both hopeful and yet quite beleaguered and weepy.
Tad asked that I spend more time with him in Santa Cruz where I am enjoying the warm days (81 compared to 67 in SF) and doting on the vegetable garden which various friends lovingly kept on track during the last round of chemo. Since I am focused on preparing for the boards i.e. studying - it's easy for me to do.
The good news is we have to time to prepare for the next rounds. If you are willing to help out by being on a team of people who take care of Tad's cat, garden and house (and sometimes his husband) during the hospital stints please let me know. We hope to get a group of folks organized in SC who can share the burden.
Sunday, May 23, 2010
normalcy...or almost
Wednesday afternoon I joined Tad in Santa Cruz where he had finally arrived forty-eight hours earlier thanks to the loving Carl who agreed to fetch him in San Francisco and drive him home (during rush hour!!).
I had been looking forward to being there when Tad was finally reunited with his/our cat and garden but unfortunately I was in the Midwest attending a gathering with my family of origin.
I suppose it was silly of me to build up expectations: I had this fantasy that we would spend our month-long inter-regnum period (between two doctors) doing things that bolster Tad's health like daily walks, morning meditations, time in the vegetable garden, seeing friends.
Instead we came back to our usual routine of being quite domestic only --thanks to a mention from the doctor about being particularly vulnerable to bugs--we're even more domestic.
Tad is more tired than I expected. He can't put his hands in dirt - no doubt the single most healing thing he loves to do. He can't go near the cat litter box and has to be careful not to play too rough with her for fear of open scratches.
The first day he spouted his anger at the fact that he doesn't even really get a proper one month break: the next oncologist already has him down for coming to San Francisco to meet and do some lab work in a few days.
"I was planning on staying away from a frigging hospital for a month," he said to me.
The next oncologist is a bone marrow transplant specialist.
It seems the most promising procedure for long-term cancer-free living is a bone marrow transplant (many of which are done with one's own bone marrow cells causing a etymological conundrum in my opinion), a very painful and potentially lethal affair.
In essence people who get transplants instead of just chemo actually live longer with no sign of cancer returning after five years however they are more at risk of dying during the procedure than folks who just get chemo. The good news is that all of the data we see on AML are skewed by the fact that the median age of someone with this ailment is 67 years old (around 4% of people with AML are actually in Tad's age range).
So I keep praying that, in the same way he surprised everyone at the previous hospital by his robust return to health after chemo, he will surprise them all yet again.
But the part of me who fantasizes about some Hollywood version of Tad walking daily along the beach with me, sometimes twice a day, to slowly rebuild muscle mass, lung capacity, heart rate; the part of me that imagined some other version of Tad transformed by the specter of death into some go-getting extroverted super hero is letting go slowly and remembering how amazingly well he knows what is good for him. Right now it is lots of rest, reading and lying low. My job is to love him and calm my own fears that that might not be enough to keep him alive through the next round of hell.
I had been looking forward to being there when Tad was finally reunited with his/our cat and garden but unfortunately I was in the Midwest attending a gathering with my family of origin.
I suppose it was silly of me to build up expectations: I had this fantasy that we would spend our month-long inter-regnum period (between two doctors) doing things that bolster Tad's health like daily walks, morning meditations, time in the vegetable garden, seeing friends.
Instead we came back to our usual routine of being quite domestic only --thanks to a mention from the doctor about being particularly vulnerable to bugs--we're even more domestic.
Tad is more tired than I expected. He can't put his hands in dirt - no doubt the single most healing thing he loves to do. He can't go near the cat litter box and has to be careful not to play too rough with her for fear of open scratches.
The first day he spouted his anger at the fact that he doesn't even really get a proper one month break: the next oncologist already has him down for coming to San Francisco to meet and do some lab work in a few days.
"I was planning on staying away from a frigging hospital for a month," he said to me.
The next oncologist is a bone marrow transplant specialist.
It seems the most promising procedure for long-term cancer-free living is a bone marrow transplant (many of which are done with one's own bone marrow cells causing a etymological conundrum in my opinion), a very painful and potentially lethal affair.
In essence people who get transplants instead of just chemo actually live longer with no sign of cancer returning after five years however they are more at risk of dying during the procedure than folks who just get chemo. The good news is that all of the data we see on AML are skewed by the fact that the median age of someone with this ailment is 67 years old (around 4% of people with AML are actually in Tad's age range).
So I keep praying that, in the same way he surprised everyone at the previous hospital by his robust return to health after chemo, he will surprise them all yet again.
But the part of me who fantasizes about some Hollywood version of Tad walking daily along the beach with me, sometimes twice a day, to slowly rebuild muscle mass, lung capacity, heart rate; the part of me that imagined some other version of Tad transformed by the specter of death into some go-getting extroverted super hero is letting go slowly and remembering how amazingly well he knows what is good for him. Right now it is lots of rest, reading and lying low. My job is to love him and calm my own fears that that might not be enough to keep him alive through the next round of hell.
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