As I mentioned in my first post, I need to make some decisions about my treatment. Here are the options as I see them:

Option 1: Stay the Course. Since last June I have received a chemotherapy drug combination called FOLFIRI every other week, except for a six-week break in the fall. The chemotherapy worked wonders as far as cancer control. I went from being in the hospital, very weak (I went from 160 pounds down to 128), on heavy-duty painkillers, and near death to being at home, able to take care of myself and my kids, and able to play basketball again. My mom moved out from Maine and took charge of my nutrition and I gained all my weight back plus some (hooray for mom's cooking!).

The downside of the chemotherapy is that I feel sick and tired all the time. The chemo drugs produce a variety of unpleasant physical side effects, but the biggest one for me is fatigue. My low energy level means that every small thing I do requires a big effort. Unfortunately the fatigue gets gradually worse with each round of chemo, until it becomes unacceptable to me (I can barely get out of bed and spend most of the day lying motionless, too tired to talk or read). That's where I was last fall when I decided to take a break from the chemo. I used the time to visit good friends in the San Francisco Bay Area (where we watched the SF Giants win the World Series!) and in Durham, North Carolina (where we attended two Duke men's basketball games at their famously raucous stadium). Unfortunately then the bone pain started to get worse, so I decided to restart the chemo.

That's kind of where I am again now. My fatigue was escalating through January, and I decided to skip a round of chemo so I could enjoy this trip to Hawaii with my partner Grace. But during this trip my bone pain has increased, and I've had to use more painkillers to control it.

So Option #1 is to resume FOLFIRI chemotherapy when I return. This is the default option, as I have chemo scheduled for Tuesday, a week from today. Unfortunately, even if I could tolerate the side effects indefinitely, FOLFIRI will stop working eventually as the cancer adapts.

Option 2: Change the Chemo. The other chemotherapy combination approved for my condition is called FOLFOX, which replaces one drug (irinotecan) with another (oxaliplatin) that has worse side effects, including peripheral neuropathy (numbness in extremities). I already have numbness in my feet due to nerve damage from either the cancer in my spine or the radiation to treat it, and I'm not eager to have more neuropathy.

Option 3: Try a Trial. I have done a lot of research on clinical trials for new experimental treatments. Unfortunately I have not yet found a good one for which I am eligible, but I am still looking. Many of the trials are in places where I would not want to spend a substantial chunk of my remaining time, away from my kids.

Option 4: Stop Treatment. When I asked my oncologists before, they estimated that I would live around 4-6 weeks without any more treatment. Of course, nobody really knows. If I chose this option, I would enter hospice care, which means that the focus of my medical care would shift from prolonging life to maintaining quality of life as long as possible. The irony is that patients in hospice care often live as long or longer than those who continue standard treatment, as discussed in Atul Gawande's excellent article in The New Yorker from last August:

Option 5: Death with Dignity. Washington, where I live, was the second state after Oregon to pass legislation (the "Death with Dignity Act" in 2008: that allows physicians to prescribe a lethal dose of medication, which a terminally ill adult can request and self-administer. There are many safeguards and conditions on the use of this option, as there should be.

Maybe in my next post I will talk more about how I feel about these options.

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Living While Dying

From the Family of Ethan Remmel

Ethan died Monday, June 13th, surrounded by his loved ones.


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