I write from a bedroom in New York City, listening to the roar of the city through the open window – the only apparent way of counteracting the overactive heater. A little global warming with your tea?
I have been in a strange limbo-land for the past few weeks, and I want to apologize to the many friends I have failed to call or write back. I don’t want to be in the position of having to guard my own time and sanity by separating myself from people, nor do I want to spend my life, whether it be short or long, in such a self-centered place.
I find myself in weary acceptance; other times, I’m so SICK of this $%^&! Sometimes I am overwhelmed with sadness. Often, I am spectacularly successful at not thinking about any of this at all. But I have been trying, in many ways, to focus my energy toward the pursuit of a long and happy life. Going to class as much as I could felt like a good way to keep moving forward and remain engaged with the world (though I did catch a disgusting flu from interviewing a patient in the hospital). Skiing at Mammoth, and Salsa and Bollywood dance classes were steps toward getting in better shape. Eating better and drinking less are part of keeping up my end of the bargain.
At some point during these past few weeks I came to a realization that I had made a long time back, but had forgotten when fear set in again: that at every stage, there are too many possible undesirable outcomes to plan for, and that the only way out of this stagnant swamp of sadness is to plan on the best case scenario. This doesn’t mean blind optimism. It means removing obstacles that stand in the way of the best outcome, and being prepared to redefine “best outcome” as time goes on.
Four consecutive blood draws have shown that my tumor markers remain stable, but detectable. The testosterone challenge test that I mentioned last time didn’t produce any fluctuation in my tumor markers, indicating that I am indeed facing a recurrence and not some freak endocrine problem. While PET-CT is not likely to be very sensitive nor specific in this kind of cancer, I had one anyway just in case. It did not show any widespread disease, which is reassuring despite the caveats.
Today I had my first appointment with Dr Bosl at Memorial Sloan-Kettering since I saw him under eerily similar circumstances in April 2007. It was unfortunately more confusing than clarifying, since his team does not interpret the recent CT scans the same way as Einhorn in Indiana or Quinn at USC. In short, they don’t see anything that they can point to and feel confident calling active disease. As a consequence, Bosl is recommending chemotherapy to treat disseminated (but not visible) disease, followed by an extensive surgery to remove any resistant cells plus any teratoma that is there. Einhorn in Indiana has a very different opinion, recommending a relatively limited (though still major) surgery to remove the growing nodule that he says he can see and believes to be the unique source of the increased tumor markers. These are radically different approaches, and imply radically different risks. I am still unsure what to do, and need to explore all of the ifs, ands, and buts of each approach, which will take some more time.
My family and I will be staying in New York over the long weekend, catching up with family and friends, and wholeheartedly enjoying our forced vacation. On Tuesday and Wednesday, I have appointments with the surgeons who will be on my case if I choose to continue here at Sloan-Kettering, and we hope to continue on to Indiana to meet with the surgical team there later in the week. Hopefully, a plan will have emerged by this time next week. The best plan. For now.
Thursday, February 12, 2009
Friday, January 23, 2009
A new chapter
I’m not really sure how to begin this entry, because I myself am feeling very detached from what is going on. I have reached the point at which it is too heartbreaking to repeat my bad news over and over again to all the people that I love, as I struggle to deal with it myself.
When the unmistakable Australian accent of my doctor emerged last Tuesday night from behind the blocked number on my cell phone, the rest of the world fell silent.
Two surgeries, eight rounds of “conventional” chemotherapy, and two courses of high-dose chemotherapy with stem cell transplant have failed to eradicate the cancer from my body. There is a small new lesion that has formed within the old scar tissue between my liver and my right kidney, and a very low, but significant new elevation in bHCG, a tumor marker found in my blood. There have been three successive blood tests that have confirmed this. They have also confirmed something positive: that the tumor marker is for the moment stable, and so does not likely indicate a rapidly-growing, imminently dangerous tumor. Despite this, the best oncological minds at USC/Norris, Indiana, and Sloan Kettering agree that this is indeed an ominous development and must be dealt with promptly.
I am in a very scary spot. There are so few people who have gone through this that decisions on what to do next are no longer being based on data, but on anecdotal experience and (semi-) educated guesswork. When I first found a lump (when was that? Even I’ve lost count…: April 2006), the chance for complete cure was something like 98%. That percentage fell to something like 80% at the next phase, then to something like 50% (depending on who you asked) before I relapsed and had to move on to the high dose chemo with stem cell transplant regimen. The chance for a cure is now probably much lower than that, though it seems that the paucity of data makes any number practically meaningless.
There are many possible next steps, but none will ever be satisfactorily confidence-inspiring. We are at a point where circle on the Venn diagram that contains the “curative” approaches has a lot of overlap with the circle that contains “palliative” measures; that is to say, it is unclear what, if anything, will rid me of this once and for all. There is little assurance that a plan designed to be curative would be any more effective than an approach intended to delay the inevitable. The clinical decision-making process in which my doctors and I have been engaged is too complex and convoluted to be fully described here, but that fact alone is really the point: there is no right answer.
That said, there is general agreement among my three teams of what their experience suggests provides the best hope for a cure: return my tumor markers back to normal by administering a new round of chemotherapy treatments containing compounds I have not been exposed to yet (taxol, gemcytabine, and maybe oxaliplatin), followed by a quite complicated surgery to remove both the new mass and as much of the accumulated gunk in my peritoneum as possible. Because of its truly unique distribution, this will likely require a team of surgeons from a number of different sub-specialties.
We are conducting a test at the moment that may or may not change my eventual treatment, but which hopefully at the very least will be amusing in the short run. It turns out that an elevation in LH, the hormone that in males drives the production of testosterone, can be misinterpreted by the machine as an elevation in the tumor marker bHCG. Not that there is any reason to suspect that I may have some separate endocrinological issue going on that would be making my LH go up, but in the name of dotting all the “i”s and crossing all the “t”s, I was given an injection of testosterone this afternoon. The idea is that while the tumor marker would be unaffected if it is indeed a tumor marker, if it decreases within a week of the injection, then in fact it was not a tumor marker at all but an elevation in LH, which would be suppressed by feedback inhibition exerted by testosterone. So far I haven’t felt any weirder than I already do considering the circumstances, but I am a bit worried to let myself out in public. At any moment I might go on a raping and pillaging binge, so watch out!
My life is completely up in the air. I don’t know where I will be getting treatment, nor how incapacitated it will make me, or for how long it will last. I don’t yet know what this means in terms of continuing with school. I don’t know if the stress school causes is a contributor to my illness, or if it is a motivating force that gives the direction and purpose I need to persevere. I don’t know if the independence I value so highly after two years without it is something to cling to, or whether it is more reasonable to retreat back into the protective comfort of home. I don’t even know what I am doing tomorrow morning. I don’t know. I just don’t know.
There was only one logical response to the shattering of my peace of mind: I threw a huge impromptu party last Wednesday night, and then flew to Washington DC for four days of celebration with family, friends, and two million other jubilant people.
Thursday, January 22, 2009
Pictures
Tuesday, August 19, 2008
Birthday post 2008
I looked out the window of my lab, down at the quad of the medical school. A line of second-year medical students was forming in front of a booth that had been set up to administer TB tests. Supposedly, I was a part of that group milling around down there, forming a nebulous line while exchanging beginning-of-the-school-year high-fives and hugs after having spent the summer apart, except that I didn’t know anybody to be high-fiving or hugging, and I have spent almost two years away from school.
As the summer has begun to wane and I look forward to finally re-joining second year of medical school, I have become increasingly worried about being able to keep up. It was daunting enough, before being addled by a flurry of pills and a slurry of secretions. Is it still reasonable to expect to achieve the goals I set Before? What future do I have to look forward to? Untrustworthy doctor? Med school dropout? Disgruntled lab tech? Disability recipient? Family mooch? There have been some pretty scary times over here.
I went downstairs and out into the sun. For a few minutes, I just stood there, sweating, alone in a crowd of people who all knew each other. And then one recognized me. And then I was introduced to someone else. We chatted. It wasn’t so bad. Say what you will about medical students (and I have), but I defy you to find another group of 170 people who are as social, energetic, and can-do as these people. I guess I can deal with that. I got up to the front of the line, and when the nurse asked my name, I started to explain that I wouldn’t be surprised if I wasn’t on the list because you know it’s complicated I’ve been … Oh. I AM on the list? Wow. OK. Great.
After lunch, the herd moved upstairs to the building where our cubicles are. Not that I expected to have one… oh wait. Look! It’s my name! On a cubicle! (this very well may be the first time in recorded history that anyone has reacted positively to this sight). And they had a new badge for me. There I am, peering out from a plastic card! I must actually exist!
A couple of days later, I am walking through the lobby of Norris, the cancer hospital where I was treated, and I see Evelyn, one of my favorite nurses. We exchange hugs, and hold back tears. She asks if I have time to come upstairs and meet a new patient of hers who just started his first round of chemo. Of COURSE I do. He’s in 3314. I know which way to turn out of the elevator. I know where to find the hand sanitizer. And when I see this young man sitting on the bed, hooked up to an IV, looking shaken but courageous, and when I see his mother sitting beside him, looking calm and determined, I know them too.
I can do this.
As the summer has begun to wane and I look forward to finally re-joining second year of medical school, I have become increasingly worried about being able to keep up. It was daunting enough, before being addled by a flurry of pills and a slurry of secretions. Is it still reasonable to expect to achieve the goals I set Before? What future do I have to look forward to? Untrustworthy doctor? Med school dropout? Disgruntled lab tech? Disability recipient? Family mooch? There have been some pretty scary times over here.
I went downstairs and out into the sun. For a few minutes, I just stood there, sweating, alone in a crowd of people who all knew each other. And then one recognized me. And then I was introduced to someone else. We chatted. It wasn’t so bad. Say what you will about medical students (and I have), but I defy you to find another group of 170 people who are as social, energetic, and can-do as these people. I guess I can deal with that. I got up to the front of the line, and when the nurse asked my name, I started to explain that I wouldn’t be surprised if I wasn’t on the list because you know it’s complicated I’ve been … Oh. I AM on the list? Wow. OK. Great.
After lunch, the herd moved upstairs to the building where our cubicles are. Not that I expected to have one… oh wait. Look! It’s my name! On a cubicle! (this very well may be the first time in recorded history that anyone has reacted positively to this sight). And they had a new badge for me. There I am, peering out from a plastic card! I must actually exist!
A couple of days later, I am walking through the lobby of Norris, the cancer hospital where I was treated, and I see Evelyn, one of my favorite nurses. We exchange hugs, and hold back tears. She asks if I have time to come upstairs and meet a new patient of hers who just started his first round of chemo. Of COURSE I do. He’s in 3314. I know which way to turn out of the elevator. I know where to find the hand sanitizer. And when I see this young man sitting on the bed, hooked up to an IV, looking shaken but courageous, and when I see his mother sitting beside him, looking calm and determined, I know them too.
I can do this.
Saturday, March 15, 2008
Regression
Since my diagnosis almost two years ago, I have felt justified in receiving more than I give. I remember the moment that I realized that I was about to have to call in all of my favors, to play all of my trump cards, and probably to rack up a hefty debt of goodwill. In a lot of ways, I really did need to be the center of attention. I relied on my doctors, residents, and especially nurses, to not forget ANYthing in their efforts to keep me alive, and to attend to my comfort 24 hours a day. I relied on friends to help me catch up on classwork that I was forced to miss, to buoy spirits in and out of the hospital, and to provide the souding boards I needed to come to terms with my illness. I relied on lovers to help me not to feel irrevocably damaged and undesirable, to provide intimacy in a life that had suddenly become all too public, and to bring tenderness to a time of sharp steel and sticky plastic. I depended on school administrators to give me the time and flexibility I needed to recover. The Physicians Aid Society covered thousands of dollars worth of medical bills. I have depended on the sympathy of co-workers to forgive distracted mistakes. In many ways, I relied on my parents for all of the above, and for too many other things to mention. I have been the beneficiary of the collective resources and goodwill of the entire society.
These days, I go to work; I play tennis; I do the laundry; I shop for groceries. There have been enough clear CTs and lab tests in a row that I no longer go to bed expecting that I might find myself back in the hospital the next day. But I am not out of the woods. Now that my life is back in my hands, I am only beginning to recognize dysfunctional behavior patterns that have emerged, or been strengthened, as a result of all that has come to pass.
I think that I probably went through a huge regression during this traumatic time. Children are dependent because they are children. It is also possible to become childish because of dependency.
Losing control of so much of my life meant that I felt justified in using the rest of it as I saw fit. I got used to doing what I wanted, when I wanted to do it, and feeling fine about ignoring the rest. Somewhere along the way, it started to feel like I deserved to be the center of attention because I’m ME, instead of because everybody recognized that their contribution to my well-being was vital. But recently having hurt many people I love with self-absorbed behavior, I am belatedly realizing that I cannot remain a black hole for people’s good will forever.
These days, I go to work; I play tennis; I do the laundry; I shop for groceries. There have been enough clear CTs and lab tests in a row that I no longer go to bed expecting that I might find myself back in the hospital the next day. But I am not out of the woods. Now that my life is back in my hands, I am only beginning to recognize dysfunctional behavior patterns that have emerged, or been strengthened, as a result of all that has come to pass.
I think that I probably went through a huge regression during this traumatic time. Children are dependent because they are children. It is also possible to become childish because of dependency.
Losing control of so much of my life meant that I felt justified in using the rest of it as I saw fit. I got used to doing what I wanted, when I wanted to do it, and feeling fine about ignoring the rest. Somewhere along the way, it started to feel like I deserved to be the center of attention because I’m ME, instead of because everybody recognized that their contribution to my well-being was vital. But recently having hurt many people I love with self-absorbed behavior, I am belatedly realizing that I cannot remain a black hole for people’s good will forever.
Monday, January 7, 2008
The Window
How normal life feels. Which is strange. After all that I have been through, how is it that I have reverted back to so many behavior patterns and thought circles? Most of the time, it takes an intentful effort to regain the perspective on life that came so naturally when I was ill.
In retrospect, life was simplified, essentialized. You know the feeling when you are splayed out of the bathroom floor, feeling like there is absolutely nothing, nothing, except your guts, your tongue, and the white porcelain of the toilet bowl? (No, of course not a single one of you has ever felt like that!) Though I didn't actually spend very much time feeling nauseous, I spent a lot of time in that kind of mental box. But I not infrequently found myself in another, much more beautiful place. With all the complexity of the world dissolved away, a kind of clarity would sometimes come to me. The wonder of the world, of love, of connection, would hit me so hard that I would cry with simple, quiet joy.
I remember that it felt like I had opened a new window to the world, and that having looked out once, I would remain forever changed. But as my life mercifully has become more normal, my emotional relationship to the world, sadly, has become more mundane. The window has become smaller, harder to find. But as I realize this, I realize how important that window is to me, and I realize that I get to choose what I let go of, and what I hold on to.
In retrospect, life was simplified, essentialized. You know the feeling when you are splayed out of the bathroom floor, feeling like there is absolutely nothing, nothing, except your guts, your tongue, and the white porcelain of the toilet bowl? (No, of course not a single one of you has ever felt like that!) Though I didn't actually spend very much time feeling nauseous, I spent a lot of time in that kind of mental box. But I not infrequently found myself in another, much more beautiful place. With all the complexity of the world dissolved away, a kind of clarity would sometimes come to me. The wonder of the world, of love, of connection, would hit me so hard that I would cry with simple, quiet joy.
I remember that it felt like I had opened a new window to the world, and that having looked out once, I would remain forever changed. But as my life mercifully has become more normal, my emotional relationship to the world, sadly, has become more mundane. The window has become smaller, harder to find. But as I realize this, I realize how important that window is to me, and I realize that I get to choose what I let go of, and what I hold on to.
Sunday, December 2, 2007
transition to reality
Transition to “real” life is going smoothly. I have decided to make LA work for me, instead of constantly being annoyed about it. The key is that I now have a great bike (thank you dad!). The best part is that it has a rack with a quick-release shopping basket, so I can get to Trader Joes and back without having to get all worked up cursing at the traffic jams in the parking lot. I don’t have to worry about getting parking tickets on street sweeping days like my colleagues, because I can walk the four blocks to work at Children’s Hospital LA (though I did get a jaywalking ticket the other day – is the LAPD really wasting time making the city even less pedestrian-friendly?) I realized that the last time I could honestly say that I was in shape was my senior year of high school when I was running track and cross country, and so I am making a concerted effort to make use of Griffith Park’s trails and tennis courts, a short bike ride up the hill.
It is eerie living alone after being taken care of for so long, but also liberating. I feel like I have more free time now that I have a job than I did when I was just sitting around recuperating. Obviously feeling healthy has a lot to do with it – go stem cells! I also notice that more always seems to get done when there is more to do (duh). Mostly, I spend my free time reading, as I try to educate myself about the incredible complexity and dysfunction of the American health care system. I bounce between The Social Transformation of American Medicine, Understanding Health Policy, and Fixing American Health Care. I am also reading The Female Brain (clearly applicable to any endeavor), a collection of short stories by P.G. Wodehouse, and I just finished The Right Stuff. Add this to a few hundred megabytes of scientific articles about the relationship between sphingolipid metabolism and cancer, and it’s no wonder I’ve got a crick in my neck. Which brings me to one of the inconveniences of living alone – it's just not that satisfying to give myself a neck massage.
And now for the bit you are all really here for, the gory, scary, life-and-death part: no news is good news. We are still in surveillance mode, where hopefully we will remain for the next few years. I had another CT last week, which was thrilling as always. I really think that if they are going to make people drink pina colada-flavored barium glop before scans, they should at least spike it with rum. It would go down easier, and everyone would be so much more relaxed. Since everyone arrives having fasted for at least four hours, they wouldn’t have to put much in to get the party started.
It is eerie living alone after being taken care of for so long, but also liberating. I feel like I have more free time now that I have a job than I did when I was just sitting around recuperating. Obviously feeling healthy has a lot to do with it – go stem cells! I also notice that more always seems to get done when there is more to do (duh). Mostly, I spend my free time reading, as I try to educate myself about the incredible complexity and dysfunction of the American health care system. I bounce between The Social Transformation of American Medicine, Understanding Health Policy, and Fixing American Health Care. I am also reading The Female Brain (clearly applicable to any endeavor), a collection of short stories by P.G. Wodehouse, and I just finished The Right Stuff. Add this to a few hundred megabytes of scientific articles about the relationship between sphingolipid metabolism and cancer, and it’s no wonder I’ve got a crick in my neck. Which brings me to one of the inconveniences of living alone – it's just not that satisfying to give myself a neck massage.
And now for the bit you are all really here for, the gory, scary, life-and-death part: no news is good news. We are still in surveillance mode, where hopefully we will remain for the next few years. I had another CT last week, which was thrilling as always. I really think that if they are going to make people drink pina colada-flavored barium glop before scans, they should at least spike it with rum. It would go down easier, and everyone would be so much more relaxed. Since everyone arrives having fasted for at least four hours, they wouldn’t have to put much in to get the party started.
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