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.