The left side of my mouth no longer curls up into a smile. And my left eyelid doesn’t blink in unison with the right one. I had recently switched my cancer treatment from palliative care to home hospice care. The difference in those terms was brought home by my facial defects. My wife and I called the home hospice nurse because we suspected I might be having a stroke. After a couple quick visits and tests, the hospice staff determined it was Bell’s palsy, not a stroke. Bell’s palsy affects a facial nerve and is often a temporary situation. One of the hospice nurses, however, asked me, “What if it WAS a stroke? Hospice care doesn’t treat illnesses. We try to make patients comfortable while dealing with an illness.” In essence, she was asking whether I would have left hospice care to get treated for a stroke or let it run its course. I asked what the effect of the stroke could have been, and she replied I would likely have lost some bodily function, possibly become incontinent, likely unable to care for myself. “But that would have just made things harder for my family,” I responded. “It’s not like a massive heart attack that would take me out.” A stroke could result in death, she replied. The implication was am I ready for hospice care? Am I ready to let go? Hospice does allows patients to slip in and out of its care for treatment, with some limitations. I thought about what she asked, and concluded I am ready to let go. But there are no assurances that when you do let go, the disease takes you all the way. That could be distressing. She said the Bell’s palsy could have been brought on by my nodes enlarged by cancer squeezing against a nerve, and suggested some steroids that might reduce the swelling. It had a 50% chance of working, I was told. I said no to more pills that might or might not work, but would surely have a side effect. And, I thought, maybe the Bell’s palsy has come at a perfect time. I need a wry smile to face the world.
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Sleeping has become my major past time. Laying on my back against a hillock of pillows is the surest way to avoid the pain that comes from the least bit of pressure on my spine, where the prostate cancer is inching its way along. And since I always seems to have just taken a pain, nausea or dizziness pill with a side effect of fatigue, it can be hard to stay awake. Emerging from sleep is like trying to climb a slippery slope in loafers. I keep sliding back into that lovely little coma. After four or five failed attempts to stay awake, I often turn on the TV, just to prevent me from sleeping more. Of course, turning off the TV has its own impossibilities. So my two biggest time consumers by far are sleep and reruns likes of “Friends,” “Big Bang Theory,” “Bob’s Burgers,” “Mike and Molly” and watching Aaron Judge strike out. This is all done while lying down. When I struggle upright, it seems my head is too heavy for my neck. I want to topple over again or at least put my head in my arms on the table. Yeah, I’m pretty boring these days. The fatigue doesn’t just come from the meds. Food and drink remains an issue and it’s disappointing that I have pills to control nausea and dizziness (from dehydration), but no doctor is any longer trying to figure out why eating and drinking is such an effort for me. In March, when eating first became a problem, I was a hefty 187. When I left the hospital recently after being treated for acute dehydration, the scale read 153. This morning I was glad to see it had gone back up to 145. This week and next, my extended family has reserved a Jersey Shore house for a big reunion. I was going to take my daughter to nearby Monmouth Park horse track and show her how to read the Racing Form. I thought that would be a classy thing for a pretty woman to know. Instead, hauling my slumbering carcass to the shore seemed too much like “A Weekend at Bernie’s,” so I have stayed home and my family is shuttling back and forth between some beach time and making sure someone is babysitting me. I can tell the Lupron shots have stopped. Lupron is the hormone treatment, or more specifically the treatment denying the body hormones -- like testosterone, which the prostate cancer cells feed on. Suddenly I have to shave a lot more frequently again. There is an upside to all of this. While nearly all of the days are groggy, most days the pain level is on the lower end of the scale. And I congratulate myself daily on having ended my chemo treatments. It must be some kind of biologic mystery when a body refuses nourishment, is in need of food and water but forcefully expels it. If an experiment is needed, I can be subject No. 1. I had been having trouble keeping food and water down for several weeks. The water I did drink consisted of small sips during the day in the hopes that it would stay in me. At one point, however, my body decided nothing was welcome. Anything swallowed was quickly evicted. Not simply ushered back out, but evicted with a violence that lifted my knees off the bathroom tile floor. A doctor said to take an anti-nausea pill, but that pill was soon gone along with the gulp of water it rode in on. After two days of this, I knew I was in trouble. There hadn’t been a reservoir of fluids in my body to begin with, and now the room began to rotate around me like a carousel. I messaged my wife at work and didn’t even have to ask her to come home early. Within hours she had me in an emergency room. If the ER docs sought convincing that I needed something beyond fluids, I threw up several times on their guerney, right after they assured me that the latest bag of fluids would solve the issue. (I ended up getting fluids in that hospital non-stop for five days.) By day two, it was becoming a pill jamboree as they tried different anti-nausea potions, valium and other drugs, while I was still taking oxycodone and was wearing a Fentanyl patch for pain. The dizziness accelerated. Instead of a carousel in which the room spins left to right, the room was now spinning at times from top to bottom. I would close my eyes and peek out cautiously. The doctors never did figure out the cause of my body’s convulsive reaction. I did. Thinking of all the pharmaceuticals being pumped into me, I realized that the worst of the vomiting began when they doubled the strength of the Fentanyl patch. When I explained this to a doctor, she immediately yanked the patch. It took about a day for my body’s most violent reactions to subside. The vomiting largely stopped, aided by meds, but I remained too dizzy to stand. Daring to eat was still an issue. And the constant rounds of anti-nausea, anti-dizziness and anti-pain pills left me asleep for the bulk of those five days in the hospital. I didn’t really mind sleeping through those days, but it has been hard to recover. I’m still constantly exhausted. Forming thoughts takes effort and typing them out -- making the correct keystrokes -- is a struggle. Going back to fix a typo is often left for tomorrow. Food is still not my friend. (God, I hate Burger King commercials.) I have a cane now because my balance remains an issue, and I’ve been prescribed a wheelchair because I don’t think I could walk the length of a store any more. All this does come with perks, however. I now have a handicapped parking sticker to hang from my car’s rearview mirror. All those spots just outside the mall door -- they’re mine! It’s been exactly one year since my wife was broadsided on her bicycle by an SUV, and in that year she has made a recovery so remarkable it would make Marvel Comics’ Wolverine jealous. She not only cheated survival odds, she has taken on more than she had before the crash. While still struggling to get control of her brain, her eyesight, her broken jaw and her ability to walk, I believe she recognized that she had a short timetable to heal. She knew that she would soon be the primary caregiver in my cancer crisis. Today, she is sitting in a chair next my hospital bed where I’ve spent the last two days. Her breaks mean rushing home to take care of the dog and the laundry, which had been one of my jobs. Instead of me checking on her, Barbara is solicitous of me at all times. She has ferreted out support groups, second opinions, recipes I can stomach. There is an unending supply of soothing head rubs. (There is nothing as calming as a loving wife’s touch.) She even arranged a reading of my book at the local library with a reception after -- a reading she had to take over along with my son and daughter because cancer has now robbed me of my voice. On the morning of Aug. 6, 2016, I got a frantic phone call from my wife’s friend to say she had been hit by a car during their early morning bike-a-thon. “How bad is it?” I asked. “It’s bad. It’s real bad,” the friend answered. To gauge the enormity of Barbara’s recovery consider this: In those first few hours, a doctor could not assure me she would live. When it was determined hours later she would survive, doctors couldn’t promise that she wouldn’t be brain damaged. Anyone who saw Barbara’s battered face and body in those first few days had trouble recognizing her, and that recognition nearly always brought tears. When my daughter joined me in the ER, she was so shaken by her mother’s condition that she sank into a chair, shaking and sobbing. In those early days, family around Barb’s bed would report excitedly that she had squeezed their hands upon request. That was a really big deal. There were moments that verged on despair, like the evening weeks after the accident when she stood for five long minutes at the sink, unable to remember how to wash her hands. And there were moments of ridiculousness, like the kissing frenzy in which a hospital orderly was taken aback because Barb insisted on kissing her too. And her big waves of hello to perfect strangers in the rehab center hallways as we rolled her -- looking like a loopy pirate wearing a skewed eye patch -- in her wheelchair. God bless drugs. She tackled rehab like a linebacker, doing more than she was asked. Not only did she need to learn to walk again and manage stairs with a broken pelvis, she needed to rehabilitate her shattered jaw and her scrambled eyesight. But her determined rehab, I believe, was fueled by my deteriorating health. While she was still in a residential facility, I confided to her that my doctor had informed me that my prostate cancer had spread to my spine, hip and left thigh bone. He estimated I had about two years to live. Barbara would later tell me that she felt bad at the time because her rattled brain was having trouble remembering what I had told her, and she would have to ask me about it. But what she did understand was that our roles would soon be reversed, that she would be taking care of me. Eight months after being scraped off the road, Barbara returned to work as a journalist at Reuters. Four weeks later, she was back full time. Being back on the clock, she knew, would make it easier for me to stop working as I found the commute grueling and the day’s work exhausting. Her eyesight remains an issue. She is still seeing double from certain angles, but she can’t find the time to do the eye exercises needed to strengthen her sight. That’s because she does many of the chores around the house that I used to do. Her near death has become almost an afterthought as my prognosis sucks up all the attention. She should have had more time to recover, to get her eyesight repaired, to just soak in the affection and sympathy following such a traumatic event. She didn’t get nearly enough attention. So on this awful anniversary, Barbara, I am so grateful for your love, patience and care. I love you and I’m sorry that I’m not taking care of you. 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. |