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I don't want to give the impression that life with terminal illness is all doom and gloom. In fact, that's exactly the opposite of the point I want to make: the key to dying well is living well as long as possible. I have just had a very fun week and one of the best vacations I've ever had.
My partner Grace and I just got back from a week on Maui without the kids. Our son Miles was with Grace's parents and my older son Seth was with either his mother (my ex-wife) or my mom. This was the first time that Grace and I have taken a vacation - just the two of us - since Miles was born. For all the parent couples out there, I highly recommend doing this occasionally. Given that our kids are the most wonderful in the world (as are yours, I'm sure), our lives tend to revolve around them. But I think that taking some uninterrupted time to focus on each other is not only good for your relationship, but good for your parenting. Happy parents make better parents!
Grace and I went snorkeling (which I really enjoy), relaxed on the beach, visited the neighboring island of Lana'i, watched humpback whales (and heard them singing while snorkeling), hiked on a 10,000-foot volcano, took a zipline tour (with ziplines up to 1200 feet long), got massages at the spa, and ate good food (including an eight-course tasting menu at the best restaurant on Maui to celebrate Grace's birthday). We had long conversations, some serious and some not, laughed, said "I love you" a lot, and told stories from our pasts that the other had not heard before (yes, we still have some of those). I was so happy that I could barely sleep at night.
All of this goes to show that you can still enjoy life with the knowledge of a terminal illness. But it also highlights the difficulty of the decision that I face now that we're back. I mentioned in my second post ("Weighing the Options") that I skipped my last round of chemotherapy so I could enjoy the trip to Hawaii. I feel strongly that was the right decision, because I felt great (after Sunday). The fatigue and sick-to-my-stomach feeling from the chemo disappeared, although it was replaced by pain in my bones. Still, I'll take that trade, because the bone pain can be controlled with painkillers (at least so far) and I still feel like myself, whereas the fatigue and sick-to-my-stomach feeling can't be controlled (as far as I can tell) and I don't feel like myself.
A note about the fatigue: I think people try to understand side effects of treatments with reference to their own experience, which is natural. But chemo fatigue is not like normal tiredness (and Avastin nosebleeds are not like regular nosebleeds, as I discussed in my last post, "Quantity Versus Quality of Life"). With normal tiredness, you can take a nap and wake up less tired. With chemo fatigue, I can lie down and close my eyes (and I often do), but I usually can't fall asleep and I don't feel rested when I get up.
So the difficult decision is whether to restart chemotherapy next week. I feel good right now, but how long would that last without treatment? From what I understand (although it's hard to get doctors to talk about such things), it probably wouldn't be long before either (a) the cancer would spread to other organs, perhaps liver or lungs, which would eventually lead to complications and death; or (b) the pain would require sedation into unconsciousness, which would lead to death, because I do not want to be nourished artificially (e.g., by feeding tube). Side note: according to Ira Byock, hospice doctor and author of "Dying Well: Peace and Possibilities at the End of Life," patients dying by refusing to eat or drink typically report that they do not feel pain, hunger, or thirst (other than dry mouth, which can be assuaged).
Or I can restart chemo and return to feeling sick and tired, but perhaps buy myself some more time. Whether that's worth it depends on some known unknowns (to channel Donald Rumsfeld, http://en.wikipedia.org/wiki/There_are_known_knowns): How sick and tired? How much time? A known known, unfortunately, is that the cost of chemo treatment increases over time, as the toxicity accumulates in the body, whereas the benefit decreases over time, as the cancer adapts to the drugs.
Those aren't great options. Which is the least bad? I haven't decided yet, but I need to decide by Tuesday (4 days away).
