I have been at a loss for words for several days now, and am still finding it hard to find exactly the right thing to say. Over the weekend, my wonderful wife had arranged for a book reading at the local library. It’s for a book I wrote last year and it has nothing to do with cancer. In fact, it’s about a time when I was indestructible, had a goat-like constitution, and every day was filled with the optimism and certainty that an overabundance of good luck brings. Instead of indestructible, family members had to read the sections for me this weekend because the advancing prostate cancer has robbed me of my voice. The book, “Three Cents a Mile,” is a travel memoir about an around-the-world jaunt I took from 1978 to 1980 and all the wonderful people I met on the road. Judging from those who came to the reading, the book is terrific. The standing room only turnout and the faces in the crowd embarrassingly moved me to tears. Damn (hormone drug) Lupron. One couple flew in from Cincinnati. Some hugged me so hard I had to defend my cancer-infected back. Others whispered heartfelt compliments in my ears. Many dozens more watched on a Facebook Live channel my niece created, with the most distant viewers in Serbia and Papua New Guinea. I know this sounds like bragging, but the flood of comments online is almost intimidating to begin reading. In the many photos posted, I am smiling like a goober. And why not? This crowd was primarily made up of my old colleagues in journalism, and that to me was a mark of respect. It may be presumptuous to make that assumption, but I am holding it to my heart. Finding the right words to say thank you for all of that is daunting, but know that you all made me ridiculously happy for a weekend. I’m still grinning. I am aware that the turnout was spurred by more than my travel memoir. These folks are also aware of my cancer and its grim prognosis. I wouldn’t say it was a “pity” audience. I like to think that it was the closest someone will get to attending their own wake. And I am delighted with that idea. The sense of being at a loss for words was also due partly, I suspect, to yet another new drug. I’ve started wearing a fentanyl patch so I get a steady stream of pain killer. We are still tinkering with its dosage and trying to gauge its effect, but it seems to make me dizzy several times a day and may be affecting my focus. My family no longer allows me to drive the car. Part way through long newspaper stories I realize I have lost the thread and just give up. I can still breeze through the Monday crossword puzzles, but can barely dent the tougher Friday ones. And I am increasingly looking to my wife and kids to fill in the word or name I am searching for while talking. At this point in this blog I have to keep looking back at what I wrote to keep track of where I was going with this. I’ve forgotten how I had intended to wrap this up. It was going to bring the story full circle, but the idea is gone. Again, I’m at a loss for words.
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Cancer, I’m learning, can throw a nasty curve ball.
I took an afternoon nap about a month ago and woke up with no voice. I expected the issue to pass and so did my doctor. But weeks later I can still only speak with some effort in a hoarse whisper. It’s like that old Dad joke when someone talks too much through the TV show and you pretend to mute them with the remote. Only I’m the one who’s been muted. A more serious look into my throat determined that my left vocal cord is paralyzed. You need two vocal cords vibrating healthily to be able to make noise. My family is familiar with vocal cords. My wife Barbara’s bout with thyroid cancer ten years ago left her in danger of a tracheotomy because only one of her cords survived the disease and subsequent surgery. Her voice has slowly grown from a whisper to a nearly normal tone as the remaining cord grows stronger and compensates. This is particularly bad timing, however, since I have invited a lot of people to an “author’s reading” this weekend. I am the author. (The book is a delightful travel memoir entitled “Three Cents a Mile.”) And now I can’t be heard, not even with a microphone. The reading will be done by family members. The source of the paralysis is apparently a cancer tumor in my chest that is pinching the nerve leading to the vocal cord. That was a revelation to me because it was the first I heard that I had cancerous tumors in my chest. There is a temporary remedy to my voice problem. It involves a long needle either through my open mouth or through my neck to inject the vocal cord with a gel or another material to plump it up -- giving the healthy cord something to vibrate against. But it’s not happening before this weekend and I haven’t had a real conversation with the doc yet about the procedure and possible side effects. In the meantime, all my phone calls start with, “Can you hear me now?” My aging dog either truly can’t hear me or is using this as an excuse to ignore me. And my wife, accused in the past of not listening to poor ol’ me, is anxious to not give me an opening and is hyper alert. So much agita over the sound of silence. If you follow this blog, you will remember my daughter as the young woman who would not be put off by my inability to attend a Yankee game with her because of my worsening cancer. It had been her Christmas present to me. So she painted my head to look like a baseball and we had a grand ol’ time watching the game on TV. This won’t-be-denied daughter, Maura, has now turned her birthday into a cancer fundraising event. As she describes in her pitch, she has been haunted by the spectre of cancer in both of her parents since she was 12, first my prostate cancer and then my wife’s thyroid cancer. And she is grateful for the advanced treatments that have allowed her parents to live as long as we have. “As I'm turning 24 today, this year marks half of my lifetime spent focused on tumors, treatments, and tests. I am incredibly grateful to have had twelve full years with my parents from diagnosis to today - something a lot of patients and their families don't get,” she wrote. But my favorite part of her appeal is the F-bomb she drops on cancer. I’ve been wanting to say that for years. I encourage you to read her post -- and to donate. It’s what she wants for her birthday There will be no more chemo for me.
I’ve wrestled with how to deal with the unstoppable advance of my prostate cancer, and decided that more chemo is not the answer. And I am relieved at that decision. On the “weenie” side, I guess this means I am not “fighting” cancer like a tough guy. To heck with that. That bout is rigged. You just endure and last as long as possible. And the point of all this treatment is not just to live longer, but to live well. Living well has become more important to me than just hanging around. My wife, daughter and son have all said that this decision is up to me and they are good with whatever I decide. God bless those, including my unsinkably cheerful cousin Mary, who are enduring much tougher chemo regimens and will keep doing so. But chemo for me was never going to be a set number of sessions and then I would be done. It was scheduled for every three weeks for the rest of my life, which was estimated by my doctor recently to be about nine to twelve months. The nasty drip had succeeded in reducing the cancer in some areas of my body, but was not effective on the cancer in my skeleton, which my oncologist wanted to address with a second bag of chemo. He has urged me to consider the extra chemo. Stopping altogether, he has advised, could shorten my life even more. The cancer literature assures patients that stopping chemo does not mean giving up, but in my case there may be an element of throwing in the towel. I have been sick and getting sicker for more than a decade. There was the surgery, then the radiation, hormone therapy, experimental drugs, radioactive drugs, monthly shots in my stomach and quarterly needles in my butt among many other things. The side effects were tough on my body and my ego. They ravaged my plumbing, gave me uncontrollable sweats for years, made me gain weight, played painful havoc with my joints, turned my sex life a fond memory, and made going someplace overnight or even out for drinks with friends something to avoid. Those procedures and meds, however, succeeded in keeping me alive for twelve years through two jobs, my children’s high school and college graduations, and my final mortgage payment. It allowed me to be there for the harrowing crisis when my wife was struck by a car. Being alive and relatively healthy was a recurring theme at many Thanksgivings and made Christmases and July 4ths even sweeter. The nightmarish side effects of chemo, however, were in another category altogether and left me essentially housebound. It was taking a drastic toll on my mind and my spirit. Now without the spectre of chemo, there is a ray of hope that I can live better, do more, see people, go places, enjoy meals, and actually have fun. It seems every med I’m prescribed comes with the same warning: May cause fatigue, nausea and constipation. Or diarrhea. I even have a bottle of pills intended to end my months-long misery with nausea. Near the top of the side effects alert is that they “may cause stomach upset and nausea.” They did. At times I have to remind myself that they are intended to make me feel better, not worse. Pill bottles litter my house like beer cans did long ago. The little orange containers are not placed in any strategic order. Many I have just stopped using and they get left where I last shook out a pill from them. At times I am baffled about what drug I should take. My doctors seem to be baffled too, at times contradicting each other. There are a lot of opinions between an oncologist, orthopedist, radiologist, gastroenterologist and a nutritionist. The radiologist suggested using the oxycodone for help with stomach discomfort. The oncologist, who prescribed the oxy, made a “that’s ridiculous” face when I asked about it. (Sometimes the pill does help.) The oncologist says my type of chemo (docetaxel) is not causing my nausea. It must be the ulcers diagnosed in March, he insists. Gastro guy says of course the chemo is contributing to my bilious stomach and ending chemo might bring respite. (He wasn’t urging I stop chemo, just answering my question.) My son gave me a vial of pot oil drops, supposedly good for stomach upset. Not sure they work, but I know they don’t get you high. A bottle of steroids has gone untouched, the strategy for its prescription long abandoned. There is a small shopping bag of meds that I have given up on because they had the side effect of making me really sick. Plus, there are over-the-counter items to deal with the alternating bouts of constipation and diarrhea. Both which can make you fatigued. And nauseous. To add to the confusion, there was a seemingly unrelated incident, although I don’t think anything is unrelated anymore. I woke from a nap on a recent afternoon with no voice. Five days later, it’s still just a hoarse croak that can only be understood within several feet. Maybe the cosmos is tired of my complaining and has muted me. I will call a doctor after the Fourth of July, but am afraid he will prescribe another pill that will cause fatigue, nausea and constipation. Or diarrhea. 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. “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. |