Part 20. Bargaining
When I fell off my roof in 2006 and shattered my leg, I spent the next six months in a recliner in the family room. I had to take off from work for a few weeks. Luckily, the accident occurred on Christmas Eve and the surgery was just after New Year’s, so I didn’t miss too many classes.
But after the accident and surgery, I could no longer make it upstairs to the bedroom, so Nicole bought a recliner for me. I always hated recliners, even though I recognized its utility at this point in my life.
I camped out in that chair in the family room for that whole spring. Thanks to Nicole and a couple of good buddies at work, I was able to return to teaching. I missed only one class.
Here’s how it worked: Nicole unloaded my wheelchair and me at my office each morning. Just after noon, my friend Jon Roosenraad would come up from his office to wheel me down to the restroom. Either Jon or Mike Foley would wheel me to my classroom at five o’clock Monday afternoons, then I’d hobble to the front of the auditorium on my crutches. Nicole collected me and the wheelchair at the end of the day.
Mike had eye surgery then and had to wear an eye patch. I recall him wheeling me to my first post-accident (for me) post-surgery (for him) faculty meeting. “Jesus Christ,” I marveled. “Between us, we don’t even make one good pirate.”
At home, there was a downstairs bathroom with a full bathtub, but because my left leg was encased in a cast, bathing was next to impossible. Bathing required me to awkwardly sit on a stool in the tub with my leg poking out onto the toilet seat.
Rather than daily deal with such a hassle, I relaxed normal standards of cleanliness and decided to adopt a new regime of lower-intensity hygiene. I decided I would not become dirty. I don’t believe I ever became filthy or aromatic. I did wash my hair daily, though. (If I don’t wash my every day I feel disgusting.)
That was a terrible period. While on crutches, I fell a couple of times and felt the screws in my ankle ripping through my flesh. Eventually, the screws had to be removed because they were working their way through my skin. I hated crutches nearly as much as I hated my wheelchair.
I also was writing Outlaw Journalist, my biography of Hunter S. Thompson (available at fine websites everywhere) and because of my experience in a wheelchair, I began to understand what might have led him to suicide. He had been similarly incapacitated. After having led such a widescreen life, it must’ve been devastating for him to have to be so reliant on other people and to be so at the mercy of a body that betrayed him.
He was sixty-seven then, and maybe he saw a wheelchair as a death sentence. I was fifty-tw0 and knew that there was light at the end of the tunnel. I would walk again. But the wheelchair certainly helped me understand feelings of helplessness and despair.
So now, nearly a decade later — and in Massachusetts rather than Florida — I went through constant chemotherapy and daily radiation. I had no cast or clumsy wheelchair, but I found that, as before, I was too fatigued to maintain my usual cleanliness routine. What was the point, since I was in bed most of the time?
I had always been the first one up each morning, the one who woke the house. But now, Nicole took that job and I pulled myself from the envelope of sleep to the sounds of the kids downstairs.
I’d get up, take a Marine shower and put on my cancer armor (the sweat clothes) — no energy for a full cleaning in the morning — and go downstairs in time to see the kids off to school. Then I’d drive my old convertible to the cancer center, winding through the snowy streets of Hingham, listening to dumb-ass sports talk all the way.
My radiation appointment was at eight o’clock every morning and even though a gigantic blizzard hit Boston not long after I’d started daily treatment, I never missed a session. Fortunately, the biggest snow dumps came on the weekends, my days off from radiating my ass.
I was too weak to help with home maintenance, but Nicole and the boys shoveled the driveway and the front walk. I watched from the perch in my bedroom. My bed backed up against a window, so I could look out and yell encouragement to the boys. As they shoveled a tunnel to the front door with their mother, I noticed that the walls of this tunnel to the front door were taller than Charley.
Relaxation had always been difficult for me, but now I had no choice. My bed became my home and that window above my head was my connection to the world.
I wore my chemotherapy pump full time. I thought it would be uncomfortable when I slept, but I adjusted my holster to a spot above my junk so that I could sleep on my side. I also generally slept upside down in the bed: my head was down by the foot of the bed, so I would not breathe or snore in Nicole’s face. I turned against the wall and she turned the opposite direction. I’d often been exiled to the guest room because of my night noises, but owing to my condition, I was back in my bedroom.
No matter what position I adopted, there was no concern that I would lack for sleep. I was too tired to to be kept awake by my pesky chemo pump.
I expected to lose my hair; it didn’t happen. I expected to feel nausea; it didn’t happen. This really surprised me because I’d always been prone to motion sickness. (Just the thought of a Tilt-A-Whirl makes me want to puke. My sister Suzanne once sat between my pal Dennis Hamilton and me and got speckled from both directions.) On family road trips growing up, I’d often gotten sick. I remember tattooing the side of Dad’s New Yorker during a winding drive through Brown County, Indiana.
But this happened: The chemo brought a fatigue that descended on me like a blinding fog.
This was my typical day:
- 7 am: Wake, drag ass from bed, comb hair, drink coffee. Get in the car and Drive.
- 8 am: Radiation treatment at Dana Farber. Consume enormous numnbers of Lorna Doone cookies, more coffee.
- 9 am: Back home, post-radiation nap.
- 11 am: Awake from nap, try to read.
- Noon: Lunch.
- 1 pm: Post-lunch nap.
- 2 pm: Wake up, try to read again.
- 3 pm: Kids home from school, talk in bed about their day.
- 4 pm: Post-kids-home-from-school nap.
- 6 pm: Wake up, dinner.
- 7 pm: Post-dinner nap.
- 9 pm: Attempted television viewing and / or reading.
- 10 pm: Sleep.
On top of the fatigue, I discovered that my historic weaknesses were exacerbated. I’d had those mysterious pains in my forearms, wrists and hands. Pre-cancer, I’d come to the conclusion that those were symptoms of Lyme disease or Lou Gehrig’s Disease. Those weaknesses were magnified by my treatment. I couldn’t open jars, lift anything of consequence, or even turn doorknobs. I had to ask for help in order to open a bag of Cheetos. I was dependent on others for even these smallest of tasks.
And there was more:
In addition to the fatigue, the chemo / radiation juggernaut also brought me difficulty in concentrating. Reading was hard. Even watching television was hard. I could feel my mind wandering. I could not stay on point.
Fortunately, Savannah generally controlled the television in the family room. She preferred the Food Network and reality shows. I could kind of follow episodes of “Sister Wives” or “Naked and Afraid.” However, “Keeping Up with the Kardashians” drove me from the room.
I would have preferred puking to this. Because if I couldn’t read or watch movies or the news, then I was bored. And I despised boredom.
There were flashes of lucidity and I tried to make the most of those moments and started making notes for the book I hoped to write during my medical leave. It was slow going, but I was too tired to allow myself to be irritated by this frustration.
There was another weird offshoot of the chemotherapy that my doctors had warned me about. Certain feelings — textures, really — would be affected by the chemical assault on my body. They wanted me to maintain my weight and not alter my diet too greatly. So I still drank beer. But in the first few days after chemo, drinking beer was so uncomfortable, I had to give it up. The cold going down my throat was intolerable — as if I was tossing single-edged razor blades down my gullet.
If I had a chemo reboot on Monday, my senses were back to normal by the end of the week, so I could drink a couple of Bud Lights without pain by the weekend.
I’ve never been a lazy person, so chemo inflicted that particular malady on me. I was grateful not to lose my hair. I had a full, wavy head of hair — probably my only decent physical feature. I was lucky not to be vomiting all the time; that side effect skipped me.
But this fatigue crushed me, and since it was coupled with the inability to concentrate in any kind of sustained way to read and write or even watch television — that was its own particular kind of hell.
So that was my routine. I was cheered up daily by the techs in the radiation suite who asked me about the book in progress. They expected an update every morning, so I had to do something, no matter how it strained my abilities to concentrate.
And every Monday, I met with John Christopher in the chemo suite. He flushed my catheter and hooked up my new buffet of chemicals in the portable cocktail I wore on my holster and discussed his favorite rock’n’roll artists from Los Angeles.
That was my world: Dana Farber, my bedroom and my window on the world. The cars rolled by on Forest Avenue, the boys built snowmen and tossed non-threatening snowballs up to me at the window, and I laid in the bed, waiting for the next act.
I used to think about H.L. Mencken. The great journalist suffered a stroke and spent his last years unable to do what he’d done all of his life: reading and writing. To be denied those two pleasures . . . necessities . . . would be a fate worse than death
But I was discovering that I needed to adjust those elements on the worse-than-death continuum. Absent any cold, hard evidence, I began to think that there were fewer and fewer things on the worse-than-death side of the ledger. Just since my diagnosis, I’d moved “Keeping Up with the Kardashians” from one side to the other. Before, I would not waste a moment on that reality-show atrocity; now, if it meant time in the family room with the children, I found I could enjoy it in a perverse sort of way.
What would I live without?
If I had to lose a sense, which would I prefer? I already had a diminished sense of smell, but could I really live without that scent of orange blossoms on a hill on a Sunday morning drive through the groves? Could I lose my hearing — never again to hear music, Music (which is) is God’s voice on Earth, as Brian Wilson said. Sight? To never see again? I thought of my children and the grandchildren yet to be born, waiting for me. I wanted to see them, if only just once.
You cast about for all kinds of bargains when you think you’re near the end. What would I give up to buy more time? That’s all I wanted: more time. Suddenly, the things that were worse than death were few in number, if they were at all.