New York, again

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.