Tuesday, March 17, 2009

And... go.

The first time around, I had these gangly tubes sticking out of the inside of my left arm that waggled all over the place and made dressing and undressing an acrobatic activity. The next time, they moved the venous access more centrally, and I sprouted tubes out of my chest. While I could finally take a shower without wrapping my arm in an elephant condom, it was still stressful to try to keep it clean and dry. This time, I have finally achieved a true man-machine hybrid state: this morning, a port was installed. A chamber 2cm in diameter bulges out from under the skin on my chest, and is connected to my heart via a tube that loops over my clavicle and down through my jugular vein. When they want to inject anything or draw a blood sample, a needle pierces a thin layer of skin and enters into the chamber. Way less stress and maintenance. And completely badass.

I sit writing this the night before I start my third chemotherapy regimen. I am feeling strangely... good. All of the stress associated with figuring out what to do is in the past. Now all there is to do is live. Tomorrow I will go to the hospital. It will mostly be boring. Some of it will probably be uncomfortable. Then the infusion will be over, and I will go home. I'll probably feel bad for a while. I'll probably sleep some. After a while, I'll feel better, and we'll go from there. It's very simple, really.

Saturday, March 14, 2009

It's time

The past few weeks have been very difficult. I have never been good at pulling the trigger on making big decisions, and the decision of which course of treatment to pursue was as big as they come, because of the immensity of the consequences either way. There have been so many twists and turns lately that I have not had a settled moment until now to write. This entry is going to be long, I am warning you. You should probably go get yourself a cup of tea if you actually plan on reading it all. If you just want the bottom line, feel free to skip to the last paragraph.

After meeting with three different doctors at Memorial Sloan-Kettering in New York, my family and I flew to Indianapolis to consult with the doctors there, and then I went back to Palo Alto for a week to regroup. It kind of felt like my own personal Camp David. Away of the mundanities and distractions of daily life in Los Angeles, looking at a crackling fire and a dozing old hound dog instead of a hospital waiting room, I had the space to think. The thing that continues to make this whole situation so complicated is that due to what was likely a medical error early in my care, my case is literally unique, and so none of the data that is out there in the scientific literature is directly applicable. Reading the literature, talking things out with friends and family, and communicating with doctors in LA, Indiana, and New York, I did my best to get a handle on all of the whys, buts, ands, and what ifs of this very complicated case. I have had the immense good fortune to have doctors who have displayed not only amazing intelligence, but inspiring humanity. Though there have been moments of ego-driven hyperbole, there have been even more moments of humility and dedication. I think that I can speak for all of my family and friends who were involved in this effort that it has been a challenge to keep it together as we bounced, often out of sync with each other, between dispassionate analysis, fearful anger, lazy resignation, and blind, screaming frustration. I will curse this cancer for the rest of my days for having caused so much disruption in so many peoples' lives, but it is not so simple as that. I also I have it to thank for opening my eyes to the spectacular love and dedication that surrounds me.

I have been forced to think about parts of medicine that no patient should have to consider, but I have to admit are germaine to becoming a doctor (ahem... I hope that the instructors of my Professionalism and the Practice of Medicine course will be moved to excuse a number of absences):

I have learned that despite the advent of instant communication and information access, medicine sometimes seems in fact to be operating under the guild system, where an apprentice learns a craft from a master, and continues as part of a proud but covert lineage. It became clear that as my doctors extrapolated as best they could from the data points that each of them found most relevant, they based their interpretations on their own personal anecdotal experiences, which were largely dependent on where and with whom they had trained.

I witnessed five master clinicians, each the chair of {his} respective department at world-famous institutions, navigate the treacherous waters of communicating with a patient. They had to make sure that I and my family felt respected and autonomous while they pitched their strategy, not so adamantly that they came across as cocky, but not so weakly that I did not take them seriously; they had to be able to use data when I required it, without rigidly sticking to statistics; they had to find ways of expressing respectful disagreement with their colleagues while advocating their own approach; they struggled to find analogies that resonated with me, and then suffered the consequences when I used those same analogies to argue against them.

I grappled with some scary questions about the way medical decisions are made. To what extent were my doctors' opinions, consciously or subconsciously, formed by their own career goals, the financial health of their hospitals, the success of their clinical trials? To put it simply, who could I trust?

Out of that Camp David week in Palo Alto, a hybrid plan was wrangled that combined the Indiana and Sloan Kettering approaches. Nobody got what exactly what they wanted, except me. I got to take the more convincing Indiana logic and combine it with the more relevant surgical expertise in New York. I got to avoid the toxicity of chemotherapy, while having the peace of mind of a surgery that could end this saga once and for all. [Those of you who know the whole story know that I am making this WAY more rosy than it actually was, but you know what? It's my history, and I am having fun rewriting it.] I would definitely be able to stay in school, and I would get to spend a whole month catching up with all of my New York friends. It was a great plan. Too bad it didn't last. [Is living in Hollywood getting the better of me? I am really trying not to over-dramatize this, but seriously, it's hard.]

When I got a new measurement of my tumor markers, all this got thrown out the window. The numbers have increased only slightly, but enough so that the Sloan-Kettering team no longer feels that it is appropriate to do surgery. It's been two and a half months of dithering. Time is running short, as are emotional fuses on all sides. It is time to act.

Another flurry of emails, hours and hours of phone calls and office visits, and multiple anxiety-ridden freak-outs later, I have made my decision. While there isn't a best decision, this one is mine, and I am as at peace with it as I can be. My port will be placed this Tuesday morning, and chemo will begin on Wednesday at USC/Norris. I will be getting gemcytabine/oxaliplatin/taxol every two weeks for as many cycles as it takes to render me marker negative, plus two more cycles. I will be in the day hospital for one long day each two weeks, and then probably be some kind of miserable for a few days after, the miserable period probably getting longer with each cycle. My white blood cell counts will certainly drop, so I am going to need visitors to be healthy and to be sure to wash their hands. The chemotherapy will be followed by an extensive surgery at Sloan-Kettering to remove as much of the residual tumor mass as possible. I still don't know how this will impact my progression through medical school. I am scared about lasting toxicity from the chemotherapy, and I am worried about surgical complications. But I am ready to be as sure as I can be that I am done with this once and for all. This anvil hanging over my head (or rather, in my guts) just distorts my life too much.

It is time to stop questioning, and instead to focus our collective energies on ensuring the best possible outcome. As I enter this next phase, I humbly ask once again for your love and support.