Happy New Year! Welcome to 2011

Ultimately, I'm not sure why I stopped writing here in early August. Perhaps it was the valuable summer summer hours, perhaps I was feeling more pressure to write than I cared to have on me, or perhaps I grew lazy and uninterested in broadcasting the minutiae of my ongoing treatments to friends and unknown persons alike.

I don't know, and I suppose it doesn't matter. I'm here, writing today.

Today, the first day of 2011, a year I would not have guessed I would see when I had my original diagnosis of Stage 1 Melanoma back in 1997, nor in 2006 when I received my diagnosis of Stage 4 Melanoma. Here I am, worse for the wear, but still alive, still breathing and witnessing the strange events transpiring in the world around me. Here I am still in love with my partner JSP, and here I am, trying not to feel sorry for myself as my disease slowly claims my body, one region at a time.

Shortly after I stopped writing, I stopped with the chemotherapy. I felt that it was too drastically lowering my standard of living and not doing any noticeable good.

In September I was feeling exceptionally poor. I was starting to see my death as immanent as tumor growth was accelerating and my general state of being was very poor. I had lost weight, and was down to 117 lbs. I was on a pretty direct trajectory toward the end of my life.

My primary oncologist Dr. A. put me in touch with some doctors operating a clinic in suburban Chicago. The idea was to explore any clinical trials that they may have access to.

My mother and eldest sister drove me to Chicago-land in late September to consult with a doctor there. To my surprise, they this suburban Chicago clinic, Oncology Specialists, had access to the B-raf clinical trial. This is an extension of the B-raf clinical trial that was profiled very positively in the New York Times and other news outlet several months ago. It had been hailed as a game changer and the biggest breakthrough in Melanoma research in 50 years.

I started this experimental drug, PLX4032, at the beginning of October, and by the end of the month felt that this experimental treatment was having a dramatic effect on my body in terms of tumor reduction. In October I was required to spend a lot of time in Chicago, having lots of blood drawn and various tests done. Since November, I have only had to go to Chicago once every 21 days for testing and to pick up a new supply of the B-raf inhibitor drug. I felt better in November than I had in several months. Car trips to with family and flights to Chicago by myself went alright. I went in to work several days at the University during November and December, which illustrates how much better I felt during this time. My body felt better and I began to eat more and put some weight back on.

However, during this time, especially December, a signifigant tumor grew larger and larger in my throat. I made an appointment with Dr. Y., my Ear, Nose, Throat doctor to discuss my options. As this tumor grew, it made swallowing and breathing very difficult, and talking eventually became impossible. On December 17, 2010, after communicating with Dr. A., Dr. Y. and the clinical trial doctors in Chicago, I had a surgery at the University of Minnesota to remove some of the tumor from my mouth. The surgery was all done through my mouth, and when it was done I felt much better. Still, Dr. Y. told me massive amounts of tumor remains in my throat. I could speak again though, and breathe and swallow easier, so the surgery was deemed a success.

I go to see Dr. Y. again on Wednesday. Swallowing my B-raf inhibitor pills, 8 huge "horse size" pills each day, is becoming increasingly challenging again. The tumors in my throat continue to grow, seemingly unencumbered by the B-raff inhibitor pills.

The story with B-raf inhibitors seem to be that they work really well... for a while. Then, without any notice, usually three to six months later, your cancer seems to mutate again, no longer susceptible to the drug's action. The cancer finds another biochemical pathway and grows again unfettered.

I'm guessing that my cancer is getting to this stage, or soon will if it hasn't already. PLX4032 did wonders for me in October and November, but now I am entering my forth month on the clinical trial.

I wonder about the tumors growing in my throat and if I will need further surgery to be able to remain able to swallow and breathe. Before my December surgery, Dr. Y. spoke about putting in a permanent feeding tube to feed me and a tracheotomy (a hole in my throat) so that I can breathe. This is the solution if the tumors in my throat cannot be controlled. I can't even begin to tell you how much I would dread that extreme solution. My quality of life would be incomparably lower and I may have to enter a hospice for palliative care. I should know more after meeting with Dr. Y. on Wednesday, January 3.

So, there is the update, the bringing up to speed. It is not all sunshine and roses, and it is not all doom and gloom.

I would be leaving something out if I didn't mention that the coming of winter, all the snow, ice, darkness, and isolation have not taken their toll on me.

Since before the Christmas holiday, I have found myself sleeping unimaginable amounts. At first I blamed it on recovery from surgery. Then just general tiredness, but I have been sleeping... sometimes up to 18, 19, or 20 hours per day. I enjoy the rest, but I also know that all this bed-rest is making me weaker in the long run. With that I will sign off and go to bed.

Happy New Year, and goodnight.