Update from Ethan

I have been laid low lately by a mix of chemo-induced fatigue, depression, opiate withdrawal, and possibly a cold. I don’t know the proportions in the mix, but the result is that I have no energy to do anything. For the past 10 days straight I have spent 80-90% of the day horizontal, mostly lying motionless with my eyes closed, not sleeping but too tired to read or talk.

To address the chemo fatigue, I chose to drop two of the three main drugs for my most recent infusion this past Wednesday and only receive the one (Avastin) that is thought to have the least side effects. In hopes of recovering in time for my planned trip to San Francisco at the end of October, I refuse to put any other poisons in my body right now. The tradeoff is that it might reduce my already limited life expectancy, but I would rather feel better, if possible, for a shorter period of time than feel this bad for a longer period of time. In other words, I’m willing to trade quantity of life for quality of life.

To address the depression, I have started taking an antidepressant and seeing a counselor (although I had to cancel my meeting with the counselor today because I was too tired to go). I was reluctant to go on the antidepressant, because I am so sick of taking pills. I found this blog post relevant to the issue: http://well.blogs.nytimes.com/2010/06/21/bidding-farewell-to-ghosts-of-pain/

Opiate withdrawal: since June I have been wearing a Fentanyl patch. Fentanyl is a powerful narcotic pain reliever (100 times stronger per amount than morphine). I don’t need it anymore for pain relief, but the one time I tried to go off it before I felt so bad that I put it back on. One of my doctors (Dr. Whiting) suggested that it might be depressing my energy level and that I should try to get off it because I would feel better in the long run. Well, I hope he’s right because in the short run I feel terrible (and my run isn’t expected to be that long anyway). Reminds me of the heroin withdrawal scene from the movie Trainspotting (although I haven’t had any hallucinations – thank goodness because that baby creeps me out): http://www.youtube.com/watch?v=GgeDh1WCyeM

Cold: I have had a stuffy runny nose lately, but I can’t tell if I have a cold. That’s what’s so frustrating about my situation – there are so many variables and medications that I can’t tell what’s affecting what or what I should do to feel better.

On a typical morning recently, I wake up between 7 and 8. I usually sleep in our former guest bedroom, and Grace and Miles sleep in the master bedroom. Within seconds of waking, I remember that I have cancer and am likely to die in the not-too-distant future. This awareness of cancer and death curdles the new day like lemon juice in milk. I am so sick of the C-word (cancer) and the D-word (death). Every little ache and pain brings a cold rush of fear – is that the cancer acting up?

I hear Grace and Miles get up. I feel that I should get up and say hello to them, but I have no energy. I feel guilty for not getting up. I curl up in the blankets like a warm cocoon against the chill outside (the nights are getting colder here – it’s 40 degrees right now at 11:23 PM). I promise myself I will get up by 9:00 AM. I close my eyes but I can’t go back to sleep. I hear Grace and Miles leave the house. I open my eyes periodically to check the time. As 9:00 AM approaches, I dread trying to get up. When 9:00 AM arrives, I command my body to get up. No response. I silently scream “Get up!” and slowly stagger to my feet, my body screaming back – “No! You can’t do it! Lie down! Rest!” I stumble to the kitchen and prepare and eat the quickest warm breakfast I can think of: hot chocolate and half a toasted bagel. Then the moment of truth: to stay upright or return to bed. Those of you who know me well know that I do not lack willpower. I may be quiet, but I’m stubborn. But the fatigue is stronger than my will, and I return to bed. I promise myself that I will get up by 12:00 PM for lunch. And so the day goes…

I am so tired.

Tired of being tired.

Ethan