Fun With Cancer

It seems to be hip to not make resolutions which is why I’ve decided to make a New Year’s resolution. After all I’m very concerned about being a trendsetter rather than following the trends. Actually I don’t care whether anyone follows me. Others may march to the beat of their own drummer, but I’m standing off to the side playing the hurdy-gurdy, which is really the only instrument I’m capable of playing. I’m that musically inept. I realized I should just give up any musical ambitions when I couldn’t even play the didgeridoo. Now before I hear from all those angry professional didgeridoo players let me clarify that it’s like the piano: it’s really easy to play, but difficult to play well, but that’s another story.

I understand why making resolutions has kind of fallen out of favor. Do you even remember the resolutions you made last year? I think they’re like “the check is in the mail” or “yes, I’ll respect you in the morning” or “club soda will get that out”. Most people, I think, make resolutions under duress. They feel pressured to come up with something to show they’re really intent on putting in some effort in the new year and then they fall off the wagon or slip out of the harness or whatever the appropriate metaphor is within a week of the new year starting.

As part of being hip I’m going for the ultimate cliche in resolutions: I’m going to lose weight. Not surprisingly this all goes back to my cancer diagnosis. It’s now more than a year and a half in the rearview mirror, but when I check my rearview all I can think is that objects appear larger than they should. It doesn’t help that not too long ago I was struggling to fit into a pair of jeans and the button above the zipper popped off, pinged off the wall, and hit me in the eye. This is really a resolution I should have made last year, but I’d been through a lot in 2014 and went a little easier on myself in 2015. Maybe too easy. And it’s not like I wasn’t aware of this even a year ago. During my last round of chemo I looked at a picture of myself and thought there were two of me, and that one of us had swallowed the other.

Last week of chemo and fading in all the wrong places.

Everybody else who’s had cancer since before Hippocrates has lost weight, but me, being the iconoclast who marches to the tremolo of his own didgeridoo, had to go and gain it. The worst part is that two days after my diagnosis my wife put me on the bathroom scale and even though I hadn’t been on the scale in months I knew what my normal weight was. The cancer had eaten away at me to the tune of almost ten pounds. That actually sounds counterintuitive, doesn’t it? Cancer is when your cells suddenly go beserk and reproduce like rabbits on fertility drugs and even if they’re drawing resources away from other parts of the body you’d think things would at least even out. Maybe I’ll ask Hippocrates about that later. Anyway my wife decided to fatten me up. She said, “I want you to eat like a Hobbit.” If you haven’t seen or read The Lord Of The Rings Hobbits typically start each day with breakfast followed by second breakfast then elevenses, lunch, afternoon tea, and I don’t know what comes after that but basically the life of a Hobbit is an endless buffet. The problem in those early days is there wasn’t a buffet in this world that could tempt me. This was not the cancer or even the chemo, which I’d barely started at that point. It was the stress of being diagnosed with cancer and not knowing what chemo would involve. Facing an uncertain future I was metaphorically and literally shrinking. Then the anti-nausea drugs kicked in and suddenly my daily schedule ran something like this:

9:00am-wake up

9:15am-Breakfast (Six pieces of French toast smeared with chocolate spread and crushed pecans)

10:15am-Second breakfast (Two sausage biscuits)

11:00am-Elevenses (Granola bar smeared with peanut butter)

12:00am-Lunch (Liverwurst sandwich, chips, milkshake, cookies)

2:00pm-Afternoon snack (Another milkshake, or maybe a can of smoked oysters or an eight ounce bag of almonds)

Dinner would be cobbled together from anything edible that was left in the house. I think one night I ate an entire bag of flour mixed with soy sauce, a can of vegetable shortening, two sticks of butter, a package of hot dogs, and a block of frozen spinach. At least I hit all the major food groups.

It didn’t help that in addition to turning me into a vacuum cleaner with teeth the chemo made me really tired and gave me an allergic reaction to sunlight so there was no way I could keep up my regular level of exercise. My wife tried to get me to exercise and I tried to listen but it was kind of hard to hear her over the constant sound of chewing.

Cancer is the gift that keeps on taking. I didn’t just lose parts of my body to the disease. I lost my health, my happiness, my ability to say I never get sick and my belief that I have no allergies. I lost my hair and while it’s mostly come back it’s thinner than it was before. I just wish the rest of me were too. I could just accept that this is how I am now, but I refuse to let it define me. I am who I am, and I’m determined that this time next year there will be less of me.

December 8, 2014. I’m really not as cheerful as I look.

Recently I passed another milestone. It’s now been a year since my big surgery, the retroperitoneal lymph node dissection. In plain English they sliced me open from my nipples to my navel and removed all the lymph nodes from my midsection. When I was told I’d have to have the surgery I was devastated. I stupidly thought chemo would be the end of my treatment, that the scans would give me the all-clear and my life would return to normal. And at that point my life was returning to normal. The big surgery felt like a setback. It would mean more weeks of recovery. I hadn’t been able to swim since I’d been diagnosed and I was itching to get back in the water. Not literally itching because that might mean I had some kind of skin condition and shouldn’t be allowed in a pool used by other people but psychologically itching. The big surgery meant I’d have to forget swimming for at least a few more months.

Swimming for me isn’t just good exercise. Actually for me I’m not sure it is good exercise because I’m kind of a clumsy swimmer, but it burns some calories and works the major muscle groups. It’s very mentally liberating being suspended in water. At the pool I go to regularly I start every lap in the shallow end then as I swim across the pool it gets deeper and deeper. When I turn to go back I like to dive down, completely submerging my body. I like to go as deep as I can, all the way to the bottom. I sometimes wonder if this freaks out the lifeguards. Or maybe they don’t notice. Well, I hope they notice, but maybe they realize that as long as I’m down there doing the breast stroke everything’s okay. I admire lifeguards. It’s one of those jobs where a good day is one where absolutely nothing happens, so I admire their ability to sit in one place and do nothing for a really long time and not fall asleep. And it’s mostly adults at the pool so we aren’t subject to the mandatory ten minute rest period every hour the kids get. When I was a kid and went to the pool almost every summer day I hated that rest period. That ten minutes always seemed interminable and it never occurred to me that it was a rest period for the lifeguards too, and that for them ten minutes was barely enough time to smoke a couple of cigarettes and maybe have a beer, but that’s another story.

When I’m deep under the water it’s very peaceful. It’s as though all the problems of the world disappear into the silence of the depths and I’m alone to contemplate big questions. Do we have a purpose in the universe? Can we survive as a species? If you swim hard enough do you sweat in the water? How can I keep my goggles from fogging? Is that a hairball?

At least that’s what I could do before the chemo and surgeries. When I first got back in the water I noticed I couldn’t swim as many laps. And I expected that. I was out of shape. The whole experience had been physically draining and emotionally it wasn’t easy either. There were a lot of times when I could have exercised that I spent lying around, times when I just felt so down I wouldn’t even have wanted to swim if I could, times I didn’t even want to get up and walk. There were times when the flesh was willing but the spirit was weak, and then the flesh got weak. So once I started swimming again I knew I had some catching up to do. And after a few months I could see the improvement, but I still couldn’t dive like I used to. I couldn’t stay under long enough to touch the bottom of the deep end.

Chemo left me with lung damage. That was one of the trade-offs: I could either get rid of the cancer and have lung damage or, well, eventually the cancer would probably have spread to my lungs as well, but at least with chemo I’d have lung damage and still be alive. I just accepted that the depths would forever be off limits to me. It was hard to accept that I’d be stuck almost at the surface for the rest of my life, but at least I was still swimming.

In some ways my recovery has been so gradual I really haven’t even noticed it. After all I’ve been through I should be a lot more conscious of my body, but I’ve been so determined to focus on what’s wrong that sometimes I don’t even notice what’s right. Some things take me by surprise. About a month ago I had reached the wall of the deep end of the pool, turned, dove, and realized I was descending. I kicked, went about halfway down, then turned and came back up. I breached like a humpback whale and took a deep breath which I’m almost positive freaked out the lifeguards but then kept swimming so they could relax and continue doing nothing. I started pushing myself, spirit and flesh working in tandem. And a few days ago I did it. At the deepest point in the pool, the ten-foot mark, I planted my left foot flat on the bottom. I’m five foot six inches on a good day so that meant there was a four and a half foot column of water over me. Then I pushed off gently and glided back to the surface.

Cancer has changed me permanently but not every change is permanent. It’s taken time but I realize that some of the things it took from me can be taken back.

What a long strange trip it was.

People often celebrate big events in their lives—birthdays, marriages—on the anniversary of those events. They mark the day of each year and treat it as special, but these were big events when they happened. Marriage days are, for a lot of people, filled with a flurry of activity and there’s not a lot of time for the couple getting married to think of even enjoy it, which is annoying because it’s supposed to be about them. And I don’t remember much about the day I was born, but I’m pretty sure there was a lot of stuff going on with me being dragged from my womb without a view and getting slapped on the ass by the doctor–I told him, “Hey, you could at least take me out to dinner and a movie first,” but that’s another story. It isn’t really until the day after the big event that everything settles down and this new life can truly be appreciated.

This is what I thought as I approached the first anniversary of my last day of chemotherapy, the day when I could officially call myself a one-year survivor of cancer. I had my last treatment on September 22^nd, 2014. It wasn’t exactly a happy occasion. It wasn’t bad either, but it was complicated. Three months of my life had revolved around chemotherapy. That’s only a tiny fraction of the time I’d already lived but I’d quickly gotten used to the routine. I’d gotten used to the nurses, to the daily needle stick, the coolness spreading through my chest as the saline first rushed in. The boredom, tiredness, weight gain, the cold rooms, the allergy to sunlight, the swelling in my legs, and, hey, being stuck with a big needle I could do without, but it was all working toward killing off the cancer and that made it all tolerable. It even made it something I looked forward to. I thought, mistakenly, that chemo would be the last step. When I was first diagnosed my goal was to get to remission, but then at least one doctor told me I had “a good chance of being cured”. I’d never heard of cancer being cured—I didn’t even know it was possible, so that excited me. I latched onto that and made the mistake of thinking there’d be an end. There was a light at the end of the tunnel, but I made the mistake of forgetting that when I emerged I’d still be on the same track and that there’d be more tunnels up ahead.

I’ve forgotten most of what my last day of chemo was like. I’ve forgotten who the nurse was, what I did to keep myself occupied, what my wife and I did when I was finished. What I do remember, vividly, is leaving. There was a young man in the waiting room, skinny, with dark circles under his eyes, wearing a heavy shirt that was too big for him and a knitted cap over his bald head. He looked up at me as I was going out. I wanted to tell him things would get better but I didn’t want to offer that kind of false hope. Things were getting better for me but maybe for him they wouldn’t, and I didn’t want to shove that in his face.

It’s a form of survivor’s guilt. There wasn’t a single traumatic event that killed others and left me alive, but I’ve lost people I loved—people I sometimes think, in dark moments, deserved to live more than I do—to cancer. And so many others have died. What makes me special? Why was I so lucky? At least one doctor told me “If you’re gonna get cancer this is the one to have.” Actually testicular cancer is just one of some of the highly treatable types of cancer, but I still don’t know what the odds are or why they fell in my favor. Even when I talk to some other survivors I feel guilty. So many had radiation, multiple major surgeries, and chemo that went on longer than mine. My side effects were minimal. I had a few bouts of nausea—I didn’t even throw up—that were so regular my wife spotted the pattern right away and could make sure I took a magic red anti-nausea pill before they started. I was exhausted but could still manage to get out of bed every day. My immune system was knocked down so badly a cold could have easily turned into pneumonia but that never happened. The worst never happened. I listen to what others went through and I wish they’d had my experience instead. What I went through wasn’t easy, but it doesn’t seem fair that others had it so much worse.

And there’s a selfish side to it too. I think about what I lost. I think about the carefree innocence I had. Before cancer I really sort of felt invincible. I’d blithely wander into labs full of anthrax and bubonic plague and flesh eating bacteria and fix myself a drink and blow my nose with a napkin I found on the floor. That’s an exaggeration, but before cancer there wasn’t any illness that scared me because I could honestly say “I never get sick.” And there’s also the fear that, going back to the train metaphor and the light at the end of the tunnel, I may be in the light right now but I don’t know what tunnels are up ahead. The chances of my cancer coming back are extremely slim but I don’t know if this was just a battle or if I’ve won the war. I don’t say I’m “cured” anymore. I can’t be certain I’ve beaten the crab.

This is what I spent September 22^nd, 2015 thinking about. It was not a happy day. Maybe future September 22^nds will be easier to get through. Maybe farther down the track there are even days when I’ll forget I even had cancer. Even if the anniversaries are still hard it doesn’t matter. September 23^rd I celebrated. September 23^rd I put all those dark thoughts out of my mind. September 23^rd I sang, I danced, I walked in the sun. I celebrated the day after.

Portrait of a fool.

My wife and I sat in the crowded hospital lobby waiting. I was clutching a pager. When it went off we would be called to another, smaller waiting area because you can’t go into surgery without having to wait and wait and wait. An older gentleman sharing the curved row of seats struck up a conversation with us, and by “struck up a conversation” I mean “gave us a meandering soliloquy about his time in the pre-seventies country music industry”. I tried to convey to him with my facial expressions that I was impressed even though I didn’t know the names he was dropping from Shinola, but he only stared at the table in front of us, gesturing as he wove through his tangled memories. He talked about his good friend Jack Greene whom I’d never heard of, and who wrote the song “Statue of a Fool”, which I’d never heard of in spite of its being so popular when it was first released in 1969 that it was the Country Music Association’s Song Of The Year. “And then,” he said, his dark eyes brightening behind his thick glasses, “it stayed so popular it was Song Of The Year the next year too. Only song in history to ever do that.”

It seemed like an omen. Months earlier when my second orchiectomy was scheduled, then postponed because my blood pressure was so high a paper cut could produce a scene from Evil Dead II, then rescheduled, I’d come to terms with it emotionally by thinking of it as an end. Dexter had been cut away and with Lefty gone I’d be a proper gelding and the whole cancer experience could be put out to pasture. Except, as I keep reminding myself, there is no end. With any luck I won’t have to have any more bits cut away—although it will be at least several more months before the plastic port that was installed just below my right clavicle can be removed. And I still have scars that will probably be permanent, and be permanent reminders of the sharp divide in my life: before cancer, when I could take my health for granted, and after cancer. Now I can’t take anything for granted. “Statue of a Fool” broke records the year I was born.

I thought about that when the pager buzzed. It had buzzed earlier when I’d had to go back for my initial check-in, rattled off my name and date of birth, and been given a wristband—a procedure I’d been through so many times I didn’t even need to think about where I was going. A nurse led me, my wife, and a small group of other soon-to-be patients and family to an elevator then through familiar corridors to a familiar waiting room. This one was smaller, quieter, and with windows that looked out at buildings I pass every day on my way to work. I think I even sat in the same corner seat I occupied when I was in the same room waiting for my previous surgery. Then I was called back to the familiar pre-op area. The familiarity of everything really hit me when the same woman who’d taken my blood pressure before my previous surgery took my blood pressure then handed me a plastic bag for my clothes, a hairnet, a paper gown, and a pair of yellow socks. I have a dozen pairs of the same kind of socks. She slid the curtain closed to give me privacy. I didn’t need to be told what to do, but I sat down on the bed, still fully clothed, for just a moment.

I’ve always thought of myself as an exceptionally lucky guy. My friends have thought so too. Once a friend and I were evacuated from an apartment complex because a gas leak set off the fire alarm. We stood around the parking lot like a couple of yutzes wondering if the building might explode.

“If it does,” said my friend, “my super reflexes will allow me to duck behind a car before any of the explosion hits me.” Then he looked at me. “It’ll all just fly around you.”

It’s a memory that’s come back to me repeatedly because I’ve felt so lucky throughout my cancer experience. At the beginning one of the doctors said to me, “You’ve got one of the best cancers there is.” There may not be such a thing as a good cancer, but it could have been worse. That same doctor told me I had a really good chance of being cured. I’d never heard the word “cured” applied to cancer before, and I repeated it a lot before I realized it was giving me a false sense of hope. I can’t say I am or will be cured because that implies that I’ve reached an end, that there’s nothing else that needs to be done. For the rest of my life there will always be another pill, another procedure.

I looked around at the pre-op room, at the yellow socks, the gown that I knew from experience I wouldn’t be able to fully tie in the back, but I’d spend most of the next few hours lying down so I wouldn’t need to worry about my ass being exposed. I looked at the hairnet. And then I started to undress and put my clothes in the plastic bag. For a moment I’d been on the verge of breaking down. I thought I was okay, but then the familiarity of everything crashed down on me, and I thought, I don’t want to go through this again. Then I slipped the hairnet over the hair that, a few months before, hadn’t been there, and adjusted the paper gown as best I could. As I lay back I heard machines beeping. Soon I’d be hooked up to a machine that would beep and trace a similar pattern for every heartbeat. I thought about how grateful I should be, how lucky I was to still be here. And I felt like a fool.