Monday, March 26, 2007
A month of recuperation
It has now been more than a month since my last chemotherapy treatment, and the once-incessant reminders of having been poisoned – crazymaking itchyness, neuropathic hand pain, a constantly runny nose, etc, etc, etc – have almost completely dissappeared. I am slowly getting used to my (relatively) hairless reflection, and am very much enjoying only shaving once a week. The most obvious physical feature that remains is my pot belly, which is about equal parts residual tumor mass and chub from sitting on my butt and eating rich food. I prefer to think of it as a wise plan to stock up on resources before my upcoming surgery, which will be a doozy.
Here’s the scoop: there is still a bunch of gunk in there, some draped over the top of the liver, some in the center of the liver where all the lobes and the vessels come together, a big glob down at the base of the pelvis between my rectum and bladder and up around my large intestine, and maybe some little bits scattered around along the posterior body wall. It isn’t clear from the CT scan who much of it is necrotic tumor, already killed off by the chemo but not yet cleared from my body, and how much of it is live tumor or teratoma, which could hang out for years before becoming a problem. Everyone agrees, though, that it needs to come out. The surgery will be long, difficult, and there are many things that could go wrong. To list them all would be unnecessarily terrifying.
With this knowledge, I have been maybe more than a little of a pain in the butt to my doctors, trying to evaluate who is most qualified to turn me inside out. One would think that it shouldn’t be too hard to find out how many surgeries of a particular kind a given surgeon as performed, but this turns out to be wishful thinking. As if that isn’t frustrating enough, it turns out that nobody has actually done a surgery like this before! Apparently, the locations of these tumors is unique in this type of disease. Normally, it spreads within the lymphatic system from the testis to the retroperitoneal lymph nodes, then to the hilar (base of the lung) lymph nodes, and then finally into the bloodstream, where it is disseminated all over the body. This is not what happened in my case: there was nothing found at the hilar lymph nodes, and nothing within my brain or any other organs, where it “should” have been found. Confusingly, though, there are tumors not within organs but ON their external surfaces, within my abdominal cavity. How did they get there? While nobody knows for sure, the signs are pointing to some of the lymphatic fluid having leaked out of an affected lymph node or vessel during the retroperitoneal lymph node dissection (RPLND) which I had done at UCSF last June. Apparently when the surgeon who performed that surgery found out, he was devastated. This is such a unique case that it has been presented a number of times at Grand Rounds both at Stanford and at USC/Norris, and should be written up as a case report when it’s over. My oncologist at Norris told me that his goal was to get me through this so that I could write up the case report myself, which I agreed to, providing that I get first authorship, and have him, the Stanford oncologist, and the UCSF surgeon as co-authors. Look out, JAMA.
It continues to be very difficult to decide where to get care. I am not yet sure whether it will take place at Stanford or at USC/Norris, and I have a couple of appointments over the next week to finally nail this down. At this point, it seems that both teams are equally qualified, insofar as the almost non-existent data shows. Again I am stuck basing a potentially life-changing decision on anecdote and opinion, which is quite disturbing.
In the meantime, I have been obstinately having a blast. Traveling with a wonderful friend, Maui was lovely and luscious and synaesthetic – the air danced, the water sang, the mountain shimmered, the lava spoke, the jungle felt happy. Six days were packed with adventure, partying, melting relaxation, and welcoming locals. We swam with giant sea turtles, saw both sunrise and sunset from the summit of ten thousand foot Haleakala, and weathered a fantastic rainstorm while camping on the edge of a cliff past Hana.
Refusing to let a return to the mainland slow me down, I then drove up to Lake Tahoe to spend a debaucherous weekend with reunited members of the UC Berkeley Ski Team. I did not get a single day of skiing in last year, and this was of course the first time this year that I have been able to get up to the mountains. Having been practically completely stationary for five months and still recovering from having my red blood cell count cut in half by the chemo, I was not at the peak of my skiing form, to say the least. But every burning turn, every winded pause, with trembling legs threatening to give out, was cause for celebration, and I spent the entire weekend with a stupid grin plastered across my face.
Here’s the scoop: there is still a bunch of gunk in there, some draped over the top of the liver, some in the center of the liver where all the lobes and the vessels come together, a big glob down at the base of the pelvis between my rectum and bladder and up around my large intestine, and maybe some little bits scattered around along the posterior body wall. It isn’t clear from the CT scan who much of it is necrotic tumor, already killed off by the chemo but not yet cleared from my body, and how much of it is live tumor or teratoma, which could hang out for years before becoming a problem. Everyone agrees, though, that it needs to come out. The surgery will be long, difficult, and there are many things that could go wrong. To list them all would be unnecessarily terrifying.
With this knowledge, I have been maybe more than a little of a pain in the butt to my doctors, trying to evaluate who is most qualified to turn me inside out. One would think that it shouldn’t be too hard to find out how many surgeries of a particular kind a given surgeon as performed, but this turns out to be wishful thinking. As if that isn’t frustrating enough, it turns out that nobody has actually done a surgery like this before! Apparently, the locations of these tumors is unique in this type of disease. Normally, it spreads within the lymphatic system from the testis to the retroperitoneal lymph nodes, then to the hilar (base of the lung) lymph nodes, and then finally into the bloodstream, where it is disseminated all over the body. This is not what happened in my case: there was nothing found at the hilar lymph nodes, and nothing within my brain or any other organs, where it “should” have been found. Confusingly, though, there are tumors not within organs but ON their external surfaces, within my abdominal cavity. How did they get there? While nobody knows for sure, the signs are pointing to some of the lymphatic fluid having leaked out of an affected lymph node or vessel during the retroperitoneal lymph node dissection (RPLND) which I had done at UCSF last June. Apparently when the surgeon who performed that surgery found out, he was devastated. This is such a unique case that it has been presented a number of times at Grand Rounds both at Stanford and at USC/Norris, and should be written up as a case report when it’s over. My oncologist at Norris told me that his goal was to get me through this so that I could write up the case report myself, which I agreed to, providing that I get first authorship, and have him, the Stanford oncologist, and the UCSF surgeon as co-authors. Look out, JAMA.
It continues to be very difficult to decide where to get care. I am not yet sure whether it will take place at Stanford or at USC/Norris, and I have a couple of appointments over the next week to finally nail this down. At this point, it seems that both teams are equally qualified, insofar as the almost non-existent data shows. Again I am stuck basing a potentially life-changing decision on anecdote and opinion, which is quite disturbing.
In the meantime, I have been obstinately having a blast. Traveling with a wonderful friend, Maui was lovely and luscious and synaesthetic – the air danced, the water sang, the mountain shimmered, the lava spoke, the jungle felt happy. Six days were packed with adventure, partying, melting relaxation, and welcoming locals. We swam with giant sea turtles, saw both sunrise and sunset from the summit of ten thousand foot Haleakala, and weathered a fantastic rainstorm while camping on the edge of a cliff past Hana.
Refusing to let a return to the mainland slow me down, I then drove up to Lake Tahoe to spend a debaucherous weekend with reunited members of the UC Berkeley Ski Team. I did not get a single day of skiing in last year, and this was of course the first time this year that I have been able to get up to the mountains. Having been practically completely stationary for five months and still recovering from having my red blood cell count cut in half by the chemo, I was not at the peak of my skiing form, to say the least. But every burning turn, every winded pause, with trembling legs threatening to give out, was cause for celebration, and I spent the entire weekend with a stupid grin plastered across my face.
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