In the past two months or so, for the first time since I was diagnosed with pancreatic cancer in mid-2017, I live with pain. Until now, I have been incredibly lucky that the only big discomfort I have experienced was during recovery from the Whipple procedure.
Some years BC (before cancer), while I was stuck in bed with the last and worst flu I recall having, my big toe, just one big toe, hurt so badly, so deeply banging away at me, that I imagined finding someone, anyone, who would whack it off with a machete. The amputation, I reasoned in the depths of my fever swamp, couldn't possibly hurt more.
These new pains come with the territory of cancer. I call them body pains and several scatter themselves around my torso and back, rearranged in different places on different days.
As the nurses taught me when I was recovering from the Whipple, alternating acetaminophen with ibuprofen every six or eight hours takes care of pain with a reduced chance of injury to liver or other organs that might occur using only one of the drugs.
Although it takes about two hours to kick in, it works for me. And I don't need it every day. Two or three and, sometimes, four times a week, I'm pain free until evening.
The thing about pain that is not of the pounding, big-toe variety is how wearing it is. It's not that you lie curled in bed whimpering. It's that it grinds you down and after a few hours you feel as exhausted as if you've run a marathon.
Thank the gods for acetaminophen and ibuprofen.
A couple of weeks ago when I mentioned these pains to the oncologist, he did not need to go into a detailed explanation of what was happening to me. I knew I had entered a new, later phase of the disease when he said he could prescribe an opioid for me.
My only experience with that kind of drug was more than half a century ago when I was in my early twenties. After a couple of days of unending abdominal pain that nothing would help, my doctor sent me to the hospital, tests were done and still, no one knew why I hurt so much.
Several medications proved useless so I was then given morphine. It was fascinating. I have no idea what happens to other people but for me, it did nothing for the pain. It did not get anywhere near even taking off the edge.
Instead, I just didn't care. I still recall lying in that bed thinking, “Oh, wow, that is the worst pain I have ever felt. What color is it? I wondered. Does it move from here to there and back? Or does it stay in one place? Is it round or maybe square? If I poke that place, will it hurt more?” And so on.
From time to time, there were some strange-looking pink animals up near the ceiling of my room, but mostly I was fascinated with how much I hurt, feeling only curiosity as though I were studying it in someone else, trying to figure out its properties.
I've forgotten other details but eventually, they took away the morphine, the pain subsided and no one ever knew what was wrong.
When I was caring for my mother when she was dying of liver and breast cancer, she occasionally asked for one of her pain pills. One day she seemed to be in enough pain that I asked if she wanted to try the liquid morphine the doctor had left with us.
“Oh, no,” she said. “I don't want to get addicted.”
Eventually, I convinced that in her condition she was unlikely to run down the block and rob the candy store, and we were able to control her pain until she had a hallucinatory experience and refused to go there again. She died soon after that.
When I had recovered sufficiently from the Whipple surgery, the nurses in the oncology clinic at the medical center taught me how to use the medications I would need to take for the rest of my life and how I needed to eat now that a bunch of my organs had been removed.
At that time, aside from some remaining, minor pain related to the surgery that would soon dissipate, I felt almost like a normal person. But one nurse explained that should there be pain at a future date, the center has an entire department devoted to pain control that I could rely on.
So when the oncologist asked me if I wanted him to prescribe an opioid, I declined. Given my own and my mother's experience, I'll wait until I need it.
I mention all this because when I made the decision three years ago to write about this cancer journey, I promised myself that if I would do it at all, I would always be honest, that I would not omit the hard parts and I would not sugarcoat it.
Sometimes I have a bad pain day. Usually that results when I think, in the morning, that it's not so bad and I can do without the acetaminophen or ibuprofen. Wrong! If it hurts in the morning, it always gets worse. But I'm a slow learner and still sometimes try to get through the day without the drugs. It never works.
Please keep in mind, that this is a report, not a request for advice. What I like about what happens in the comments on this blog is that often, many of you have thoughtful responses that relate to living with the circumstances we are stuck with. I believe that is valuable for all of us and I greatly appreciate it.