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I'm still alive! Sorry I haven't posted for a while. The main reason is that I have been too tired after my last chemotherapy. I had chemo (the FOLFOX drug combination) about two weeks ago. It worked great to reduce my bone pain, which is now under control, but I was really out of it mentally for a few days and then had about 10 days of extreme fatigue. I've only started to feel better in the past few days, and I still don't feel great.
I have decided not to do any more chemo because I can't stand the fatigue, which makes my existence feel useless and pointless. I think people have trouble understanding this, but the fatigue is worse than the pain, because the fatigue robs me of my mind and thus my identity.
I have officially entered hospice care. However, that doesn't mean that I will necessarily die soon. To enter hospice care, you must be expected to have 6 months or less to live, but it's not like you're in trouble if you live longer. In hospice care, the focus shifts from treating the disease (which there was never any chance of curing in my case anyway) to treating the symptoms of the disease. In my case, the main symptom is bone pain, which we are currently controlling using opiate painkillers. However, we are also pursuing radiopharmaceutical treatment using samarium-153 (commercial name: Quadramet), which is supposed to help with widespread bone metastases like mine.
When people think of hospice care, I think we often picture someone close to death. And it's true that many people enter hospice care too late, after there is much chance to improve their quality of life. Nobody, including me, knows how close I am to death, but I am trying to continue living. Yesterday I played basketball and went to a movie with my beautiful partner Grace. Today I mowed the lawn and went out to dinner with Grace, my two sons, and my mom Kathy. Tomorrow Grace and I are spending the night on a nearby island at a romantic inn with an acclaimed restaurant. Next week I will start teaching my spring quarter course at the university.
As I've written before, I think the key to dying well is to live well as long as possible. However, it's not possible to live well when you feel too sick and tired to do anything or enjoy anything. That's why I'm stopping the chemotherapy. I would rather be able to enjoy the time I have left than have a longer time but be miserable.
It's easy to feel like you're letting people down by stopping treatment. Obviously, all else being equal, my family and friends would rather have me around. However, I think my family and friends understand my decisions. That's one reason that I'm writing this blog.
I'm also not pursuing clinical trials anymore. I found out recently that I am not eligible for the last one I was considering, which was in Washington DC. I've searched through all the clinical trials (http://clinicaltrials.gov/) and none make sense for me. That's fine. It's one less thing for me to worry about, and most clinical trials, especially early-phase ones, don't end up helping anyway.
I would like to thank all the people who have commented on this blog. I have been impressed with the thoughtfulness and sincerity of the comments. I especially appreciate the comments from those who have dealt or are dealing with cancer, either in themselves or loved ones. Although I wouldn't wish cancer on the worst person in the world, it is comforting to know that I'm not the only one dealing with these issues.
I have so much more to say, but it will have to wait for another day.
