Nodding Off

I’ve not been much of a napper for my adult life. I indulge in a nap perhaps once or twice a year, always to the shock of my family. I claim this not as a badge of honor; it’s simply my nature. I’ve always too much I want to do to lie down in the middle of the day.

No longer can I say this, however. This past week, I now nap all the time! 10 minutes of yoga? Time for a one hour nap. 25 minute walk through the park? Maybe an hour and a half dozing on the couch. Rally to fix up a little dinner to give my wife a rare break? Back on the couch for an hour, approaching bedtime be damned.

It’s not me —but it is me, now. My fatigue has become an unwelcome but frequent visitor. I don’t know if it’s the anemia (the cisplatin surrendered about 3 units of my blood to the ethers thus far), the cisplatin itself, all the cytokines kicked up via irradiating my mouth, the DNA repair and immune attention to clean up after all that radiation, sleep that is quantitively fine but surely qualitatively impaired, the 15# of fat and muscle lost to treatment, or some combination of factors, but this fatigue is the latest, and I hope last, of serious symptoms to arise.

On the one hand, I suppose it’s not too problematic. My body probably appreciates an extra hour or three of daytime rest to heal. Naps pass the time. They don’t seem to affect my nighttime sleep. What disturbs me, I think, is the loss of control. I expected the mouth pain, the skin radiation dermatitis, the issues eating, the weight loss. Somehow, though, I questioned whether my overly-energetic self would ever really get hit with such profound fatigue.

Suddenly, I find myself unreliable. If a patient wants to schedule a talk with me, I’m afraid to pick a time in case my brain has gone off-line. We need a STAT conversation with our contractor about the ever-bloating budget for the home we are trying to build, but I require a time cushion to build in an hour nap if we’re coming from the hospital. I’ve turned over all driving duties to my wife, who now has “chauffeur” added to her growing list of daily tasks. I don’t like this notion of having my brain suddenly possess an on-off switch which I cannot control. I feel powerless over my most vital organ!

I also wonder when I will regain my vitality. In the realm of exciting news, I have literally one week left of treatment. 4/5ths of one week, actually, for those scoring at home. Perhaps more exciting, we actually bought plane tickets the other day, to return a week from Tuesday. A month ago, I might have wept with joy to be so close to a return to Hawaii.

Now, my excitement is a bit tempered. My team this week made it quite clear that “being done” does not equate to “feeling fine.” The cellular destruction of the cisplatin and radiation will carry on another week or two, and actual healing often lags farther behind; good, for tumor annihilation, not so good for my mouth or energy. I realize that only part of my intense longing for home — literally, to the point of tears befitting a childhood homesickness, at times — derived not from the divergence between the literal flower-bedecked upcountry paradise in which we live and this grim Seattle winter, but from my deep desire to be back in the place where I feel like myself again. Back home, where no one causes me to suffer, where I enjoy instead of dreading food, where I sleep contentedly free of these cursed repeating dreams. That home, I realize, might not exist for a matter of weeks, perhaps months.

Again, though: I do not wish to complain. In the big picture, I would have bribed the Cancer Gods untold riches to be feeling as well as I do right now, 6 weeks in the books of this treatment. While I can moan about the various maladies I suffer, in reality outside of this fatigue and the breakdown between my ears and collarbones, I am holding up well. The rest of my skin, my joints, my immune system, and, most thankfully, my cognition, have carried on remarkably well. I’ve paid our taxes and reviewed every single patient lab and message as of these past two weeks, things I often struggle with in better times.

I also realize how much I could improve this experience via a better attitude. I don’t struggle to paint a brave face when facing outward to the public; but when alone or with my family, it’s all too easy to whine more than necessary. I just received a book on Princeton’s legendary basketball coach, Pete Carril; I’d helped a friend write one of its chapters. I expected little by way of new insights, it being a collection of player remembrances of the sort in which I was well-steeped from 4 collegiate years at the social periphery of the men’s basketball team.

To my surprise, though, I found the book to be inspiring. Coach Carril, already fading from his glory years during our stay on campus in the late 1980s, had been a bit of a punch line among us for his bad behavior and strangely callous treatment of many of his players. However, one part of Carril’s nature became clear, reading account after account of his former players: he not only liked toughness and full effort from his players, he demanded it. Real success, the kind that could actually be celebrated, could only come from complete and skillful effort, over and over. Anything less would be rebuked, often harshly; “pretty good” effort got zero credit. In this world of participation trophies and incredible sensitivity to everyone’s feelings, I have to ask myself: have we lost something in being so very nice?

Ultimately, I agree with what I take to be Carril’s dogma: if you’re not giving your very best — and making sure you are doing so with actual skill! — you’re letting the world down. It’s a hard lesson to attempt to absorb and reflect at this particular moment, when I’m uncomfortable, down, and hurting. It doesn’t go away, though. When I whine instead of share what is germane in my discomfort and soldier on with the best attitude I have available in my repertoire, I lose the opportunity to show my daughters that suffering may be inevitable, but misery is always a choice. I’d like to do better in that regard.

Sometimes, though, my very best is to lie down and sleep. The sun has re-emerged in this northwestern sky. I need to put calories in my mouth and take my daily walk. Then, most certainly, the couch will call me back for yet another nap.