The end of one thing is only the beginning of another. My three year relationship with Amelie has drawn to a close. While this is clearly not a good time to be rocking the boat, I decided that the stress of the status quo was more dangerous than the risk of moving on. The breakup was very traumatic for both of us, and the outcome looks like it will be much less amicable than I had hoped. It was a difficult decision to come to, horrible to actually drop the bomb, distressing to know that she is taking it badly, and sad to think about all of the things about the relationship that I loved, and will miss. But it was the right decision, and I feel that I did it honestly and lovingly (even if she doesn’t). It is deeply saddening to lose such a good friend. I can’t afford, however, to dwell on it right now. I have to remain positive, and look ahead. I am on to a new phase in my life, with new dreams to be dreamt and new plans to be made.
To give Amelie room to move out and move on, and myself a positive, controlled environment, I have relocated to Palo Alto again for three weeks, and am currently doing round 6 of chemo at Stanford. My next round will be in LA starting February 5th, and I should be down there a few days before. If you are local (LA), be prepared for a party sometime the weekend of Feb 2-4.
My white counts mysteriously having bounced back up to practically normal levels, my doctors decided that travel wasn’t too risky, and so I was cleared for a whirlwind weekend trip to New York with my parents. While going to New York is always exciting, the impetus behind the trip wasn’t pleasant: we were there to attend a memorial to a dear friend, Jeff Hoyer, who unexpectedly died of a heart attack. Huge, wild, roaring with strength and intelligence and creativity, for me he embodied New York. His energy careens on through the pulse of the city.
Working as an independent computer consultant to support his real life as an avant-garde musician, Jeff didn’t have health insurance, and didn’t heed warning signs or his friends’ admonitions to seek help. My two cents: Schwartzie’s health care plan is BS. Somebody like Jeff wouldn’t have gotten employer-based insurance, and he wouldn’t have gone to see a doctor because the minimum $5000 deductible on the individual plan wouldn’t have done squat for him until he had a diagnosis. It is a huge barrier to care. There are lots of other problems with it, but now is not the time. I’m sure I’ll be in the mood one of these days.
Tuesday, January 23, 2007
Monday, January 22, 2007
going... going...
mangy rat phase
dad's idea: duct tape
test strip
mom's idea: lint remover
the inevitable midway photo op
the result
Thursday, January 11, 2007
Addicted to good news
It is hard to retain perspective. I am so used to things going spectacularly well that even moderately good news is a let-down.
Monday morning I showed up for my pre-chemo blood draw and appointment with my oncologist. Since the blood work takes a few hours to get analyzed, we discussed what the plan would be depending on the results. He told me that since my tumor markers had been so low the previous week, there was a possibility that they would have fallen into the normal range by today, allowing us to skip the cisplatin (the drug that causes the most short- and long-term side effects). When we came back from lunch, the nurse told me my results: the tumor markers had continued to fall! It took a few minutes for me to explain why I wasn’t happy with this apparently great result. While they have fallen, the markers are not yet low enough to consider lightening the chemo load, which means not only another cycle of feeling awful, but yet more permanent hearing loss.
I am learning a lot about medicine these days. I have often felt, as I am sure everyone has, that my doctors were trying to leave the room as quickly as possible. I have always just assumed that they were busy, and that since I was basically healthy, that it kind of made sense that they wouldn’t spend a lot of time with me, because they had more pressing matters to attend to. When I became a cancer patient, I immediately assumed that all of a sudden I was one of those patients who was taking up their time, and that I deserved every moment of it, and more. I realized today that despite the gravity of my situation, my case is still on the lower end of the danger scale. There is a huge amount that could go wrong, and does for a lot of people. Infection, secondary cancer (caused by the treatment), both at once… It is these incredibly difficult and complicated cases that motivate, and yes, interest, my doctors. Once my diagnosis was made and a treatment plan decided upon, there was not a lot left for the doctors to do, besides be on the watch for serious side effects, and plan contingencies if things go wrong.
The medical school system is set up to cultivate this interest in extreme pathology. We spend what has seemed to be a disproportionate amount of time learning about rare but terrifying diseases, as opposed to more common but relatively benign conditions. I think that this emphasis on the dangerous and uncommon is responsible for much of the dismissive attitude that many patients feel from their doctors. During my studies, I often have found myself wondering things like “how is it that I know about temporal arteritis, but I still don’t really know what causes a headache?” These days, though, I understand a bit better why the emphasis has been placed where it is. While they are common, most headaches just hurt; temporal arteritis can make you go blind. Somehow the vastness of the gap that separates discomfort from debilitation was less distinct when I was healthy.
On the other hand, I also understand better the value of the time we spend learning how to listen to and communicate with our patients. There are plenty of supposedly qualified people around here who are absolutely incapable of answering questions directly and clearly, which causes me to lose confidence in the competence of my medical team. This stress is profoundly disturbing.
I am also learning much about the boundaries of medical knowledge, and the difference between clinical work and what we are taught. My absolute neutrophil counts (the most important number for assessing my immune status) have been all over the place, and nobody has been able to give me a clear explanation of why. It turns out that nobody really cares! The bottom line is that since my cancer is potentially curable, they are willing to push my immune system to the point of danger, because the likelihood that a secondary infection would kill me is less than the danger posed by not finishing off the last bits of tumor that may be hiding out. So while it is frustrating and not confidence-inspiring that nobody can tell me why the cell counts are what they are, I am realizing that the point-A-to-point-B logic that we are taught in medical school is really just the first step, and that in the clinic, understanding the system is only useful if it helps the patient. It is being able to know when you need more information to make a good decision that is important, not being able to reconcile the results in front of you with what it says in the textbook on your shelf.
Monday morning I showed up for my pre-chemo blood draw and appointment with my oncologist. Since the blood work takes a few hours to get analyzed, we discussed what the plan would be depending on the results. He told me that since my tumor markers had been so low the previous week, there was a possibility that they would have fallen into the normal range by today, allowing us to skip the cisplatin (the drug that causes the most short- and long-term side effects). When we came back from lunch, the nurse told me my results: the tumor markers had continued to fall! It took a few minutes for me to explain why I wasn’t happy with this apparently great result. While they have fallen, the markers are not yet low enough to consider lightening the chemo load, which means not only another cycle of feeling awful, but yet more permanent hearing loss.
I am learning a lot about medicine these days. I have often felt, as I am sure everyone has, that my doctors were trying to leave the room as quickly as possible. I have always just assumed that they were busy, and that since I was basically healthy, that it kind of made sense that they wouldn’t spend a lot of time with me, because they had more pressing matters to attend to. When I became a cancer patient, I immediately assumed that all of a sudden I was one of those patients who was taking up their time, and that I deserved every moment of it, and more. I realized today that despite the gravity of my situation, my case is still on the lower end of the danger scale. There is a huge amount that could go wrong, and does for a lot of people. Infection, secondary cancer (caused by the treatment), both at once… It is these incredibly difficult and complicated cases that motivate, and yes, interest, my doctors. Once my diagnosis was made and a treatment plan decided upon, there was not a lot left for the doctors to do, besides be on the watch for serious side effects, and plan contingencies if things go wrong.
The medical school system is set up to cultivate this interest in extreme pathology. We spend what has seemed to be a disproportionate amount of time learning about rare but terrifying diseases, as opposed to more common but relatively benign conditions. I think that this emphasis on the dangerous and uncommon is responsible for much of the dismissive attitude that many patients feel from their doctors. During my studies, I often have found myself wondering things like “how is it that I know about temporal arteritis, but I still don’t really know what causes a headache?” These days, though, I understand a bit better why the emphasis has been placed where it is. While they are common, most headaches just hurt; temporal arteritis can make you go blind. Somehow the vastness of the gap that separates discomfort from debilitation was less distinct when I was healthy.
On the other hand, I also understand better the value of the time we spend learning how to listen to and communicate with our patients. There are plenty of supposedly qualified people around here who are absolutely incapable of answering questions directly and clearly, which causes me to lose confidence in the competence of my medical team. This stress is profoundly disturbing.
I am also learning much about the boundaries of medical knowledge, and the difference between clinical work and what we are taught. My absolute neutrophil counts (the most important number for assessing my immune status) have been all over the place, and nobody has been able to give me a clear explanation of why. It turns out that nobody really cares! The bottom line is that since my cancer is potentially curable, they are willing to push my immune system to the point of danger, because the likelihood that a secondary infection would kill me is less than the danger posed by not finishing off the last bits of tumor that may be hiding out. So while it is frustrating and not confidence-inspiring that nobody can tell me why the cell counts are what they are, I am realizing that the point-A-to-point-B logic that we are taught in medical school is really just the first step, and that in the clinic, understanding the system is only useful if it helps the patient. It is being able to know when you need more information to make a good decision that is important, not being able to reconcile the results in front of you with what it says in the textbook on your shelf.
Sunday, January 7, 2007
vacation
I apologize if I’ve caused some consternation with my lack of recent postings, but I’ve got to be in a writing mood to write, if you know what I mean. I am back in LA, beginning round 5 tomorrow at Norris after having spent three weeks at home in Palo Alto, getting treatment at Stanford.
It is difficult to be back after such a wonderful vacation. I doubt I have ever had such a long period so filled with old friends, laughter, and amazing food. My mother cooked up a storm. People came to visit from across the country (the fabulous Elena Byhoff being one of them, who specifically asked to be included in that way so that searching Google for “fabulous” and “Elena” would point to her – not that the rest of you aren’t special, you’re just less demanding). We threw a twelve-hour blowout house party on the 30th, complete with fire dancers, drummers, lots of great wine, and a healing circle. Walks in the woods, a trip to the beach. Playtime in San Francisco. Nostalgia in Berkeley. And finishing it all off, a three-day slow drive down the state with my family, staying in Paso Robles and Ojai.
Even the week of treatment that I did up north was relatively easy. Being able to go home at night made all the difference. Also, the side effects of the ACE regimen were not nearly as severe as with the POMB regimen. In fact, one of the side effects is apparently amnesia, because I can’t really remember what happened. I think I was mostly just bloated and blotto. Couldn’t really do… much… at… all… and thinking… was: slow. I also got Neupogen shots once a day for four days to boost my trashed immune system (recombinant G-CSF, for those who care and know what that is), which caused some nasty bone pain in my back and pelvis for a couple of days. This was expected, because the marrow in those big “flat” bones is where most of the immune cells are produced. I had a lot of good news: I am unexpectedly not severely immunosuppressed, which is a very good thing considering the gigantic holiday parties I went to. The even better news is that my tumor markers are within striking distance of normal! The reference ranges are around 10 (don’t worry about the units), and the markers had been in the thousands and tens of thousands. They were both around 35 last week, a huge drop! Does anyone else think it is strange that I had to request that my blood work be done? Don’t my doctors care to follow these things closely? OK, maybe it wouldn’t affect the treatment plan, and it costs money, but isn’t my peace of mind worth it? Sheesh.
It is difficult to be back after such a wonderful vacation. I doubt I have ever had such a long period so filled with old friends, laughter, and amazing food. My mother cooked up a storm. People came to visit from across the country (the fabulous Elena Byhoff being one of them, who specifically asked to be included in that way so that searching Google for “fabulous” and “Elena” would point to her – not that the rest of you aren’t special, you’re just less demanding). We threw a twelve-hour blowout house party on the 30th, complete with fire dancers, drummers, lots of great wine, and a healing circle. Walks in the woods, a trip to the beach. Playtime in San Francisco. Nostalgia in Berkeley. And finishing it all off, a three-day slow drive down the state with my family, staying in Paso Robles and Ojai.
Even the week of treatment that I did up north was relatively easy. Being able to go home at night made all the difference. Also, the side effects of the ACE regimen were not nearly as severe as with the POMB regimen. In fact, one of the side effects is apparently amnesia, because I can’t really remember what happened. I think I was mostly just bloated and blotto. Couldn’t really do… much… at… all… and thinking… was: slow. I also got Neupogen shots once a day for four days to boost my trashed immune system (recombinant G-CSF, for those who care and know what that is), which caused some nasty bone pain in my back and pelvis for a couple of days. This was expected, because the marrow in those big “flat” bones is where most of the immune cells are produced. I had a lot of good news: I am unexpectedly not severely immunosuppressed, which is a very good thing considering the gigantic holiday parties I went to. The even better news is that my tumor markers are within striking distance of normal! The reference ranges are around 10 (don’t worry about the units), and the markers had been in the thousands and tens of thousands. They were both around 35 last week, a huge drop! Does anyone else think it is strange that I had to request that my blood work be done? Don’t my doctors care to follow these things closely? OK, maybe it wouldn’t affect the treatment plan, and it costs money, but isn’t my peace of mind worth it? Sheesh.
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