I suggested to my cancer doc that I stop my chemo treatments. Then he suggested doubling them. I laughed. He didn’t. The chemo I have been taking had lowered my PSA (the element in the blood that indicates how much prostate cancer is being produced) and was effective at shrinking the cancerous lymph nodes in my neck. But it hasn’t touched the cancer in my bones, and the cancer continues to spread through my spine, hip and left thigh bone. The thigh bone is particularly worrisome because of the danger that it could shatter. So he wants a second bag of chemo to target the bones. To do that, however, he needs a biopsy from my bones. That means a bone scan, a CT scan, a PET scan, all which are necessary to locate the best place to extract the biopsy, guide the needle, and figure out what to do about whatever they find. There are about five things in that scenario that I don’t like, and nothing I do like. I objected that I want the periodic pinned-to-the-floor bouts of chemo-induced pain to stop along with the ever-present nausea. I want to eat and drink again without trepidation. The cancer doc, however, does not believe the nausea is being caused by the type of chemo (docetaxel). If I stop chemo, I will still be nauseous, he insists. He urged me to go back to my ulcer doc to get scoped again. Yet another invasive procedure. With these potential procedures piling up, I asked for a fresh estimate of how long I have to live. With my wife and daughter present, he said, “Nine months… Maybe a year.” Some may say that I have buried the lede, a newspaper term meaning the most gripping fact was not at the start of the story. But it seems wrong to highlight that point when it doesn’t seem real, although I know he said it. My wife even took notes. If I go through all the scans and accept the second sack of chemo -- which has the side effect of causing yet more nausea -- what difference would it make? “It would be incremental,” the doctor said. “Maybe another three months.” He added, “It depends on how much you want to fight.” There it is again, the image of battling or fighting cancer. Do we fight cancer or do we simply endure it as long as we can? Am I just being a weenie over some chemo-induced discomfort? Or am I right to not want to spend what time I have left lying in sterile hospital rooms for scan after scan, chemo drip after chemo drip? It’s a tough call, one I haven’t made yet.
0 Comments
“This is a brotherhood you do not want to join.”
It’s not the most inviting come-on from a fraternal group. But it’s also not one you can reject. “If you do have prostate cancer, you definitely want to be a part of this,” the group’s web site states. The Reluctant Brotherhood is a group that joined with other online support groups to form the Answer Cancer Foundation. They are wise men with advanced prostate cancer who have experienced the bone pain, the nausea, the medicinal dead ends, the clinical trials. They have dealt with the doubts, the exhaustion, the anger and so many other emotions that come with dealing with this shitty disease. “Technical talk and numbers are kept to a minimum and we focus on our emotional lives, which is something few of us are comfortable talking about,” the site states. But what I have found to be most helpful was the group’s second opinion. The weekly calls begins with as many as a dozen men checking in by phone from California, Minnesota, New Jersey, Australia and elsewhere. The moderator and co-founder, Rick Davis, sorts out who is on the call with the help of another member. There is good natured confusion since we are talking about men in their sixties and seventies who are not digital geniuses. But they know the issues that members of the brotherhood are confronting. They know the meds. They often know the patient’s doctor. They knew my doctor (reputation good). And they have questions that the doctor should be asked. When I told them I was considering stopping chemo, they suggested having my oncologist ease the dosage, use a different drug (they mentioned a drug that some find easier to cope with). They rated the effectiveness of different drugs for nausea, talked about medical pot that some found helpful and others found to be useless. Some relived their own miseries on chemo and said they were glad they hadn’t quit the regimen -- although one man said he wouldn’t do it again. They encouraged me to not skimp on the pain pills, something I find difficult to do. Here was expert advice that wasn’t from a doctor who had never endured the side effects of his prescriptions. They revealed several alternatives that I wouldn’t have trusted if I had read about them online. This group’s pedigree to evaluate treatments is unquestioned. These men are patients, but they are also very patient with someone like me, bewildered and in pain. They know what it feels like to want to throw in the towel. They didn’t say I shouldn’t. They just talked about coping. And they did it without anger at the cancer or their doctors or their rotten luck or faulty DNA. It may be a reluctant brotherhood, but there are times when any brotherhood is welcome.
I woke up, surprised to find myself sitting on a toilet, fully dressed, my head in my arms that were propped on a nearby sink.
Looking around to get my bearings, I knew I was at home. But I didn’t remember coming into the room. Or sitting on the toilet to take a nap. The after-effects of chemo sessions are always unpleasantly surprising, No two seem to be alike. This day was proving the rule. My last chemo was a few days ago and was followed by okay days and less comfortable days. Then, I was plunged into a world of hurt -- what my doctor’s office later described as a “pain emergency” -- and some other effects that verged on comedy. To quickly catalogue the misery, I woke with a searing pain in my right shoulder that during the day spread through my chest and later to both shoulders and my shoulder blades. It was so intense that I could not sit on a couch because leaning back against a cushion was like cuddling up to shards of glass. And there was this overwhelming fatigue, which in combination with my inability to sit back in a chair is where the laughs come in. Exhaustion was so overpowering that I couldn’t keep my eyes open. I would fall asleep while reading, watching television, staring at my dog. My head slumped forward to avoid falling back painfully on a pillow. At one point, I was writing a note to my doctor to say I had taken two painkillers, oxycodone, but the narcotic had no effect on the pain at all. I was alarmed and asking for help. But I dozed off while in the middle of writing this SOS. When I woke, I finished the note. But the note was being written in Memorial Sloan Kettering’s portal, and I had timed out in the portal. Consequently, I didn’t notice that the note went nowhere. My doc’s eagerly waited response -- hopefully a prescription for a stronger pain killer -- obviously never arrived despite my frequent checks. In the meantime, I was trapped inside my body, moving around the house occasionally in a vain attempt to find a room or position that offered some relief. Later that day I woke on the the toilet. Hours were spent at the dining room table with my head on my arms. Anything to avoid pressure on my back. I repeatedly drifted off gratefully off to sleep in this pose. The pain was easing a bit by nighttime, but not the fatigue, Trying to watch a Yankee-Red Sox game, I would see Michael Pineda wind up, but would slump forward before the pitch was called a ball or strike. I saw bits of every other inning. So my wife and I decided to watch the final episode of House of Cards (meh), thinking that would hold my attention. Later, with the show over, my wife went to bed and I channel surfed for a bit. I can remember hitting the off button on the remote, but it was like I turned myself off. I woke several hours later, my finger still on the off button, the remote pointed at the TV. Maybe you had to be there to get a sense of the ludicrous. But the zombie-like state, the pain emergency, and counting down the days to the next chemo all seems worse than the cancer. Other people have more grueling chemo regimens than I do. I know of people undergoing far worse. But for most people who endure chemo, it’s a cure. Chemo isn’t curing anything for me. It is squeezing a bit more time for me, maybe weeks, possibly months. Waking up on a toilet may be good for a chuckle, but increasingly I struggle with the idea that chemo is not worth doing. Writing about my cancer diagnosis is easy for me, maybe too easy. Talking about it, however, is more daunting and I try to avoid it.
But I recently got a taste of how talking about it can help. A friend who is dealing with the grief of a family tragedy has stopped by a couple times to check on me -- when I should be checking on him. The last time he came by, we sat in the shade in lawn chairs, our dogs close by. We chatted about someone we both know who is being ravaged by the disease ALS. This man has an unsinkably sunny disposition. He’s a marvel to experience. The disease has ended his ability to speak, yet he still smiles. That’s when I said I was having trouble being upbeat, cheerful, that I was unable to overcome the drag of daily pain, and of anticipation of what was to come. Not death. The ugly time between now and then. My friend understood immediately, and quickly dismissed my concern. “We can only be who we are,” he said. His dog shoved her way between the lawn chairs and nudged him for a rub. Our ALS acquaintance, he continued, was always a happy guy, outgoing, cheerful. “But that’s not me,” my friend said while massaging the dog’s head. “I don’t even pretend to try to be upbeat. I’m not that kind of person.” He smiled, a wry, weary thing. The pooch leaned towards me, hoping for more attention. As I obliged, this man said he had tried a support group, but it wasn’t for him. He did, however, make contact with someone who had experienced a similar tragedy. They have met and now write to each other weekly. This connection, however, has nothing to do with cheering anyone up. In fact, he said his messages to his new friend are all signed, “Fuck.” “On a particularly bad day, it’s fuck, fuck, fuck,” he said. At times we were both scratching the dog as we confided how difficult it is to escape a dark hole. My own grumpily aging pooch was asleep in the grass, intentionally out of reach. What does get the ALS sufferer down, my friend said, was when he talked -- by email -- about the effect of his disease on his family. Yes, I agreed, that’s the worst and the biggest concern. As much as I would like to be a ray of sunshine and keep my family laughing, it’s going to be an occasional thing. And for my wife who has to deal with my long silences and dark moods, I can only apologize. Fuck. I swallowed the large pill with a big gulp of water. While still swallowing, I felt a stab wound in my chest, followed by a second one in my back as the pill carried by the wave of water made its way down my throat. I braced myself on a chair back as a burning sensation lingered in my chest. What the hell was that? That, it seems, was the latest permutation of the never-ending side effects from my cancer treatment. I had just finished two weeks of daily radiation to alleviate pain in my spine and left hip caused by the cancer. The radiation treatment on my spine had extended up into the thoracic -- the chest -- area. When I told my doctor about the sudden problem with swallowing and pointed to where the problem was, he said quickly, “You have a radiation burn on your esophagus.” He predicted it would go away in about ten days. A second doctor who supervised the radiation wanted me to take a couple of prescription meds several times a day for two weeks. What I wanted to say was that no one mentioned the possibility of radiation burn on my esophagus when I asked about possible side effects. In the meantime, however much I may enjoy the taste of some morsel in my mouth, I now dread swallowing it. I also discovered that sending something hot down the gullet produced a particularly searing sensation. Chewing food and then spitting it out was a consideration, but I do need to ingest some calories. The scale says I’ve lost a couple more pounds. I can now wear shirts that I had put in the back of my closet because the buttons threatened people near me. And my pants are loose. This swallowing thing is the latest irony to one of my long-held life plans. After decades of trying with very limited success to not eat delicious things -- chocolate, cream filled donuts, bacon cheeseburgers, French fries, beer, etc. -- I had jokingly said that if I knew I had a certain period of time left to live I would gorge myself on those denied items and happily die a fat man. Instead of indulging myself, every item I’ve just mentioned is as appetizing to me as biting a cactus. Between the ulcers, the nausea from the chemo, more nausea from the radiation and now this, my doc is worried about me losing too much weight. A final irony. There is a family-sized bag of Cheetos in my cabinet that hasn’t been opened for months now. In an earlier period, that bag wouldn’t have lasted a week. |