Paul Simon wrote that line. It fits the paralyzing disequilibrium that took me over as I was handed a game-changing diagnosis of tonsil cancer. I wrote the following note on the subway home for the worst case scenario. Fortunately it has proved, like reports of Twain’s death, to be premature.
This is that maudlin letter you dread from someone who
believes you would actually
maybe like to have a farewell note:
If you get this I have navigated a dark corridor
descended slippery stairs
to black water’s edge
stepped into and pushed off waiting skiff
This calamity came upon me too unexpected and sudden to complete a proper memoir – you may be relieved but really, it would have been a good read. I’m not about to allow a newspaper to relieve my heirs of $900 for an obituary so please pass on this news to whom it may concern.
November 18, 2014
Lucy died this year of cancer – I saw her on Friday, she died Monday. Her husband Dick is fighting it as well, Wayne Klein, Ed Arnold, Herb Greecy, Stan Sharshall, Mildred Thompson, John Fenton, Tom Wells, all tucked into mortal coils of that awful finality. Donna has colon cancer, Genevieve Arnold died, Don Welch died, my Father died, his sister Murph and her daughter Phylis died, David had it, Lori died last year, Diane has it… according to John Robbins, these United States have the highest cancer rates on the planet, attributable in large measure, to the outlandish influence corporations have on state and federal legislators.
So with this ominous background… In June I noticed what felt like a hair in the back of my throat. I dismissed it as a new twist in my usual spring allergies. Months later I flipped on a flashlight for a look at my throat. I was appalled to see a prominent, gross growth hanging back there. I called my dental hygienist, asking if she had noticed. She asked me to come in. They thought it was tonsil with some kind of growth on it. Wouldn’t be overly concerned but do have it looked at. Made an appointment with Dr. Turton to get an insurance-required referral which took about two weeks, and one week later a cancellation got me in Tuesday November 18th.
Dr. Moore said, “Open,” and immediately, “It looks like cancer.”.. referred me to Dr. Patel, more waiting. Assistants Kelly and Martha called me in, examined with a mini-camera – I could see the monitor, looking at the tonsil and then down the nasal cavity (didn’t hurt as I expected but was certainly uncomfortable), macabre objectivity to see the throat, the opening/closing flap as she asked me to stick out my tongue or say ah… she was quite sure, it’s cancer, … in comes Dr. Patal, after one quick look says, “I’m 90% certain, a tumor – squamous cell carcinoma.” T2 (size) … 70% of those so diagnosed are still alive 5 years later (very good odds for cancer he kindly says but I am in shock).
Options – after biopsy confirms: surgery – if this happens it means less radiation/chemo, daily for maybe 2 weeks? All this needs clarifying. Total treatment 6 weeks from start which is after meetings to agree on strategy – “team” approach … Patel and Martha attempted to be supportive, kind, empathetic, Kelly a more distant technician. If nothing is done: 3 months? 1 year? Unknown time-frame but the disease will grow, “explode” and take my life!!! Results of biopsy in 2-3 days… from there meetings begin and treatment, hopefully over by January and it doesn’t exhaust our savings.
Side-effects: no hair loss but beard will fall out – weird, and weight loss but strategy to maintain, even a stomach feeding tube insertion as eating may become difficult (lack of appetite, sores in throat). Will also need physical therapy if surgery, if you don’t use’em you lose’em (muscles)… sounds like maybe a rough road coming up. Patel stared sympathetically at me, giving me the opportunity to emote, and asked how I feel… I was sort of at a loss but finally said, well, it’s bad news but ce la vie…. pause….what’s next? Now, 3 hours after being hit with this, I’m assuming a 6 week treatment then back to status quo, maybe a healing time. But they did say 70% not 100% so anything can happen. This of course awaits us all, death I mean, but as I told the dentist, NOT YET!
I keep wondering who to brief on this, no one but Cyndia my first reaction but then have second thoughts. I’ll just mull it over. It was hard to tell her that night, and hard for her to hear it.
The content of my mind-chatter of course heavily involves this unwelcome development but when I get into the now all that worry dissipates, I don’t have a problem NOW and yes there are things to do but worrying, when I catch myself I try to become the observer… when I’m successful it dissipates and I’m ok… I tell myself that i’m going to go through a rough patch with some chance of being among the 30% non-survivors… after all, I can’t expect much more than 20 more years anyway, hell, 15 according to social security guidelines… it comes sooner or later, I tell myself… helps some though the nagging fear returns.
Dentist called, encouraging, supportive… Clyde thinks they might be worried about being sued as it seems they should have spotted this, was so obvious when I looked with a flashlight… but i’m not interested in that… I could have looked much sooner too. I’m going to deal with what’s before me. The hygienist asked if I’d Goodsearched it but I said I was working on my memoir… she took that as fatalistic but that’s my current project. She said radiation dries the mouth and saliva protects teeth so that’s a side-effect to look into, see if anything can be done. Also supported the surgery-first direction if optional since it would decrease the amount of chemo/radiation.
Reminding myself to Goodsearch squamous cell carcinoma… notified Betsy, asking legal advice, Glenn due to anti-nuke obligations… went to probably my last Wednesday music jam for awhile… didn’t mention the Cancer – was pretty good jam, Emma and Stephanie have been coming and their singing is fine. Actually did one of mine, The Patriot,… did a Band song … it didn’t have chords so I just sang and that felt pretty good… the disease would intrude occasionally in my consciousness but not overly, more toward the end when Todd, John and I were just chatting. As it turns out the treatment schedule was not as imminent as I expected so continuing to attend jams… went to jams at Mark’s too… great fun… Mark and I went until 3:30 a.m.
During the night I wake preoccupied with it, fear… I take a breath, focus on that… seems a reliable way to dismiss the fear, transpose it into presence… some of it is telling myself that story, yes, going to go through a rocky patch here but 70% chance… like going in for a crown, more intense and serious (and expensive) but still, just a procedure… the main thing is switching from being fearful to observing the fear, usually a discomfort (pain) in chest and scary thoughts… observing, when I think to do it, usually dissipates or transposes.
Brother Dusty called last night, had a good talk. He sent a great snow photo. He also has a positive biopsy for prostrate cancer but confused by multiple negatives so they’re just keeping an eye on it. Maureen, Steve and Gus all sent supportive missives, Steve mentioning Jimmer’s completion of chemo and being ok – that was good to hear, that it can actually work. Willeye had a clever response also as did good ol’ Joe, made me drop a tear… went to Sandler Hudson Gallery today, inquiring into stored piece. Debbie said she’d get it later and I said I wouldn’t be available until mid-January, she asked where I’m going and I sheepishly told her, tearing up.
Disturbed sleep, trying to be the observer but not as effective as yesterday… fantasies and dreams not direct but obvious manifestations of worry. A 9 a.m. phone call scheduled a petCT scan for Dec. 4… I had forgotten they wanted to do those scans, head and full body so that must mean waiting those results before treatment. Next week is Thanksgiving so nothing prolly will happen then. I like having more time yet wonder whether the C. can be spreading….? I’m turning this over to the experts and getting advice from various people on second opinions, alternative treatment or accompanying traditional with alternative… Simpson Oil, derivative of pot… miracle drug according to niece Lisa… book recommendations from Glenn and Kevin… I keep thinking if the 70% is to be believed then to try some untested alternative, “snake oil” or not, would be fool hardy – it may actually be what it claims but I’m as yet unconvinced, not inclined to take that route. Most of the time i’m ok, much of the time doing something, like the memoir, music or running errands – but stabs of fear occasionally intrude and I remember, I have cancer… OMIGOD! Try to be the observer, dissipate it… stick to that strategy, like the song says, whenever you think to, take a breath, let it out…. here you are.
Dusty called just after I got the appointment… he was walking the dog and says it was cold cold and snowy, said he turned back toward home and now he’s walking into the wind… brrrrr!… makes ya wanna move … weeks of below zero weather… he said maybe the Dec. 4 appointment is a good sign, no need for urgency. I said I’d put it in that column… but I actually don’t know. Sister Gus called this evening… told a few jokes.
Sleeping better in terms of anxiety… it comes but is quickly met by awareness, being the observer. Watched a Tolle clip this a.m. where he equates ego with the unobserved mind. That’s a slightly new twist to me. It’s true that when i’m thinking about something I’m totally there (not here), like I was walking in the cemetery aware of being isolated, had a fantasy of a mugging and well into it realized/awoke from it… so it was only afterwards that I was aware and observant… during the fantasy I was “out.”.. unobservant, occupied by ego, unconscious… as Tolle says, keep NOW in the background.
Decided to create a list to send updates, asking people not to call me because my throat needs rest… tender from the biopsy… I don’t like repeating this story over and over to people is another reason. I’m always more comfortable writing an email than speaking on the telephone… my preference… shyness part of that.
Day 6 – 11.
Some impatience today (and yesterday)… panic attacks in the evening watching a movie then reading a disturbing book, Dog Soldiers… switched to some pleasant stories by James Herriot but even then mild panic attacks which is to say, fear not easily overcome with the observer. Wondering about the delay in treatment… are these folks on top of it? Cyndia on vacation this week but suffering a cold, maybe exhaustion, needs rest. Nug (me dog) has an engorged tick, tried to get it with tweezers but he got upset. Turns out not a tick – we have twin tumors, his quickly and expensively removed. Pretty much otherwise just awaiting the scan… Daniel (son-in-law, M.D.) dropped over this a.m. Had breakfast and I laid it out for him. The anxiety comes, as it has, in varying degrees of intensity, and I meet it with varying degrees of success but generally pretty well.
Day 12 – 16.
12/1: I called in late afternoon, Kelly confirming malignancy, saying Dr. Patel is talking about robotic surgery, probably early January. Wednesday next, 12/10, staff meeting after which, Thursday?, meeting or call with me to lay out strategy, answer questions etc; I was told two-three days for biopsy results but it was two weeks or more and I had to inquire. A glitch in their professionalism.
Folks from music, Kathy, Mark, Judy now aware of and supportive, Mark gave me a bottle of broccoli tablets which enhance synapses (?), Glenn recommended a book, Love, Medicine & Miracles. Kevin recommend reading Opus 21, a novel about someone with same kind of cancer. Dr. Ron there at the right moment more than once with the right suggestion. Janet recommending Qigong with testimonial that docs had given up on a patient who completely recovered with Chi and is envisioning healing, sister Patty has her group praying for me… all miracles welcome!, I say. Tolle is my reality-based strategy. Wing says studies have shown envisioning has a measurable effect. I like to think presence produces the same.
OK, so it goes on, day after day into the new year and all the way to summer 2015, thirty eight pages, so far. Early December I had a full body scan which showed spreading to one lymph node. This shifted treatment, ruling out surgery in favor of seven weeks of radiation with three chemo sessions over that period. December 23 I had the tube inserted, a procedure I expected was in-office but I was wheeled into the operating room just as I went under from the anesthetic and spent the night in hospital. My daughter happened to come to town that day so she and Cyndia visited. They said the room was really hot but I was shivering, seeking more blankets. When it was explained to me what the procedure was I was grateful not to have been there for it.
They inserted a tube down my throat and could somehow locate it from outside, cut an opening just the right size, passed the tube out to the point where it was mushroomed and thus more or less held in place. Features to allow pouring and plugging were added and voila! Good to go. But very creepy. The first few weeks it was sensitive, I had to hold it against my body to keep it from bouncing as I walked but by the end of treatment I was hardly aware of it. Removal in April, however welcome, was painful – a burly orderly had to work pretty hard but he finally pulled it out, by hand. The mushrooming end had to be forced out through the smaller opening. Ouch! The feeding tube’s function is as backup should treatment produce side-effects that preclude normal eating. It proved in my case to be a necessary supplement though I was never completely unable to eat.
Another pretreatment item was a visit to the dentist. I was led to believe that there was a good chance I’d need some extractions because once treatment began there couldn’t be any side issues. It was with great relief that my dentist pronounced extraction unnecessary. They fit me for “plates”, molds of my teeth into which I needed to insert a protective paste each night. Radiation/Chemo affect such that the part of saliva that protects teeth from decay is severely reduced. What saliva remains is very thick. Doing these plates each night turned out to be one of the most tedious aspects of a very tedious, sometimes painful regimen. Maybe because it was at the end of the day when I did it, exhausted usually. The dentist expected me to keep the plates on all night. I quickly discarded that idea, taking my chances. The paste was mildly distasteful and as treatment progressed it became ever more so, to the point of gagging. In fact I got to where I couldn’t floss or brush, so susceptible did I become to gagging with the least attempt. Dentist was pleased, and so was I, to pronounce the ol’ teeth in good shape later in May.
One last weekend before treatment began 1/6/15, and I was cautioned not to “party” since I’d need all the energy I had to meet this ordeal. I did attend a music jam, the last one for me of a regularly scheduled gathering until I cautiously felt up to it again in late April. I went in for the first day, had blood work and while awaiting results got the first radiation, about forty minutes (subsequent sessions ran about twenty minutes). Then in for the first chemo, a seven hour ordeal. Attached to an IV on wheels that allowed mobility, highly necessary as frequent urgent urination was definitely part of the deal. Fortunately chemo has evolved to where an anti-nausea substance is part of the “cocktail.” Anti-nausea pills were also available for the following days. This proved necessary only a few times over the three chemo sessions. At first I could read during infusion and I got as far from the ubiquitous and annoying television as possible. In later sessions I could only sit there lethargically, completely drained, dependent on friends and neighbors for transport. For the radiation I was fitted with a mask marked for the technician and strapped to the platform to hold me in place during “zapping.”
Cancer cells divide more frequently than healthy cells. This allows repeated radiation sessions to kill more cancer cells than other cells, for they are only vulnerable when dividing. You lose healthy cells too, thus the side effects. The seven weeks of treatment has become standard for throat cancer, to get all the cancer without killing you. But it seems to come close, I can testify.
I concluded after awhile that everything I needed to know was offered up by the staff or in the hand-outs but the emphasis was lacking that I needed. They repeated as a mantra – hydration, nutrition, hygiene, very important to attend to all three. The side-effects though, produced changes such that even ice cream tasted terrible. At first I just couldn’t eat properly and soon I was experiencing the results. Psychologically this meant awful dreams, nightmares, despair, pessimism, suicidal fantasies. I thought of giving up, withdrawing from treatment and clearing up my “estate.” I ran this by Dr. Saba, the oncologist whose emphatic response re-ignited my survival instinct. “So your food tastes like cardboard, eat it anyway. This is your one shot.” That week I noticed blood in my urine and reported it. Bloodwork revealed a severe potassium deficiency. So I sat with the IV once again, seven hours. But the next day I felt re-energized, realizing the obvious, that mood, how you feel, is highly affected by what you eat, or don’t eat.
This was the first of several crises during treatment. The next was when I became so constipated, no BM for over a week. Doctor Beitler, the radiologist, recommended a laxative made from senna, failing to mention that it’s important not to use it too much, to avoid developing dependency. The bottle had a warning on it however. Also he suggested a softener. Doctor Saba recommended Pepto-Bismol, a gentler, more natural product. I tried the softeners, no luck. Senna was next, no luck, even doubling the dose. Adding Pepto-Bismol and drinking some apple juice seemed to do it. In fact it over-did it. Now I had the opposite problem.
Normal things, like listening to Garrison Keillor while cooking, or looking at a movie, were becoming high irritants. After fleeing a movie Cyndia was watching, The Hobbit, I climbed into bed, very discouraged, fearful, feeling once again like I couldn’t deal with this stuff. The Tolle ideas that had helped earlier with anxiety weren’t up to meeting this challenge. But lying there I realized, I can’t just passively accept this deterioration. I got up and ate a whole banana, hard as it was to eat anything, knowing that bananas tend to produce constipation – it worked, the diarrhea was almost immediately gone. My spirits lifted along with it. To an extent. All through treatment I had disturbing dreams and dream scenarios where I was doing repetitious, meaningless acts as though it were super important that I keep repeating them. Every hour, sometimes more frequently, I had to get up to pee. I would get into bed and say, OK, I’m warm (it was winter), I’m comfortable, now rest. This despite fits of coughing sometimes, very sore and sensitive throat and tongue, “sunburned” neck, beard loss, hair coming out in clumps (though I didn’t completely lose head hair). I had to shave to be fit for the mask and it didn’t grow back for months. Still have no hair under my arms and the beard is skimpy.
A throat specialist coached me to do daily exercises. She said that side effects can produce an inability to swallow properly, getting fluid into the lungs and risking pneumonia. White fungus-like accumulations grew in my mouth and throat and there was frequent rinsing and gargling necessary to keep this at bay. At first I tried to keep up my regular routine, songwriting, blog writing, political cartooning, reading but gradually it became a full-time job, doing the hydration, nutrition and hygiene, along with rest. I could hardly speak toward the end and had to limit conversation, avoiding answering the telephone, relying on email – and of course it was just then that my email program crashed and I had to rely on a very clumsy alternative. The kindness and concern of friends and relatives astounded me during this period. I appreciated this but also, in the worst periods, avoided as much as possible contact with other folks. Because I just had no energy for it and also because I was worried about exposure, with my lowered defenses, to colds and flu etc; Somehow, fortunately, I avoided all that. I was determined, while I could, to take Marta into treatment. One day I saw a woman carrying an infant rush over to a trash can and throw up. I carefully avoided her and others on the train who could pass on their ailments. Eventually a pre-arranged list of my neighbors took turns transporting me to treatment, as I became so weak I couldn’t do the walk nor driving myself.
I doubt that I’ve communicated the enormity of my nightmare, now mostly passed. Anxiety, fear, dread psychologically, along with physical discomfort, stress and pain. And I’m of course not alone. When I would sign in for treatment in the morning there were others waiting ahead of me, and soon behind me, a steady uninterrupted stream, all day. Some holding up better than others but all affected, worn down, sometimes to extreme fatigue. One day one person was on a gurney awaiting transport to hospital and this seemed hanging over all of us if we slacked off in our regimen. We were told that it really hits the third week and gets worse right up and beyond the last treatment (where you were awarded your mask as a mark of completion). This I can attest, was absolutely true. The staff, doctors, nurses, technicians, were all fabulous, nurturing and empathetic, coaching and encouraging all with a good-natured humor. The chemo team rang a bell for my last treatment and insisted I do a little dance. I felt in good hands from day one. Of course they’re not gods, they make mistakes, have bad days and there are often long waits for brief meetings, lots of picking and sticking, blood tests, throat tests, scans, the rigorous treatment, depression and fickle weather, parking, transportation malfunctions… all often a trial. But it sure feels good to come out the other end alive.
Through a non-profit called Immerrman Angels I was assigned a mentor who had been through the same treatment I was about to undergo. Mike was an incredibly articulate guide who helped me navigate. His emails always cheered me up and helped me keep in mind that this too shall pass. I naively expected maybe two weeks of recovery after treatment ended February 27. Mike cast serious doubt on this estimate. By late April I began to attend music jams again but had to leave earlier than previously. My voice was easily strained but as it came back I noticed that it was now a step lower in register and, as others would comment, sounds amplified compared to before. I need an afternoon nap most days. My endurance is less but improving. In late May it was a grand thing to hear Dr. Patal say, “You don’t know how good it makes me feel to tell you that your scan results show zero cancer.” I am apparently one of those susceptible to this viral form of cancer. I asked him whether, since I’m susceptible, isn’t there a high chance I’ll get it again. He said, “Very unlikely.” I suppose the incubation period is longer than I probably have left to live.
It took the longest time for the pain in my throat and tongue to clear up, still not 100%. That and taste are the lingering issues. It isn’t that I can’t taste food, it’s that so much tastes really bad and the slightest seasoning puts fire to my tongue. For a long time I could only eat bland hot breakfast cereals. For some reason I could tolerate, even enjoy, cheese grits all through. Now anything cheesy, potatoey is good. I’ve had pesto and quiche to good effect recently, even pizza. Over the past two months I’ve seen great changes where a little salt was fiery to where today I had some salted almonds and they were fine, some onion on a veggie hot dog. Soon I might be back to the wonderful jalapeño. But food invariably disappoints me, looking like what it is but never living up. I was told that I could lose as much as 20% of my taste permanently. We shall see. I’m interested in coffee once again and it is almost as it used to be. Maybe this is an opportunity to rethink some food choices. I’m vegetarian but still eat dairy and sugar. I’ve lost nearly forty pounds, something I could never seem to do under my own volition and I am determined not to backslide. I can drink a little wine if I water it down. And until my eating is closer to normal I’m still supplementing with energy drinks leaving me those, water and coffee, so far, as the only thing I can really drink. With this gradual return to normalcy (near-normalcy), I expect my harsh ordeal of the first half of 2015 will fade into its measured place, with everything else, in the great field of being – insignificance.