Fun With Cancer

I was diagnosed with testicular cancer June 17th, 2014. Life goes on.

Public And Private.

Source: Boston Globe

Public tributes to Chadwick Boseman, like the one in Graffiti Alley in Cambridge, Massachusetts, are a reminder that he was a public and very prominent figure. And yet he kept his cancer diagnosis private so that many of us who are fans were shocked by his death. I know some have criticized him for not speaking up, saying he missed an opportunity to educate the public about colorectal cancer and its changing demographics. It’s rising among younger people and Black people. I won’t repeat or even link to the critics but at the same time I will acknowledge them. He didn’t choose to get cancer, but he could choose how he responded to it. I don’t know why he chose not to talk about it but I know when I was diagnosed with cancer I didn’t want to talk about it, and didn’t tell anyone outside of a few people for three weeks. And when I did talk about it I joked about it because it was hard for me to admit even to myself, even after I’d started chemotherapy, that it was really happening.

There are a lot of reasons my own fight with cancer is different: I had a different, and much more treatable, cancer, and my own treatment was probably a lot easier than his. And yet I remember days when I didn’t even feel like getting out of bed. I was out of work for six months because my immune system crashed. He kept working, filming and co-producing Marshall, Black Panther, and two Avengers films. He was even confident he could finish Black Panther 2.

Also consider four major roles that help define his career, a career that was cut too short: Jackie Robinson, James Brown, Thurgood Marshall, and T’Challa, the Black Panther. There was some luck involved—in art and in life none of us can control everything—but he chose to portray four people, three real and one fictional, who are all legendary. He chose roles that contributed to discussions about race in the United States.

Respect his choices.

Hail and farewell Chadwick Boseman.

 

Know What You Need To Know.

Before your next doctor’s visit we would like you to take the following steps or be prepared for some new measures:

Please have a mask and wear it when you come to the doctor’s office.

If you have prescriptions please call ahead to make sure they’re refilled before your visit.

We have hand sanitizer available and ask that you please use it regularly, including

when you enter and exit the building.

Please use the automatic doors when entering and exiting the building.

Wear gloves or use your elbow when pressing elevator buttons.

Your temperature will be taken upon entering the building with a no touch thermometer.

Maintain a safe social distance of at least six feet or, in Montana, two shovelnose sturgeon.

If your doctor’s office is in Montana shovelnose sturgeon will be provided.

Please let staff know or consider rescheduling if you have experienced any of the following recently: coughing, fever, excessive sweating, shortness of breath, fatigue, loss of taste or smell,  an irrational fear of cotton balls.

Arrows have been placed on the floor to show walking directions. Please follow the arrows as they are there to help maintain social distance.

The shovelnose sturgeon are stuffed and lacquered. Please do not try to eat them.

Your privacy is very important to us. When it’s time for your appointment please don’t make the receptionist yell your first and last name more than twice.

You will have exactly one hour to solve all the puzzles and escape from The Mystery Mansion Vault. You can ask your guide, Jeff, for up to three free clues. Additional clues, however, will cost your team time and your chance at a free t-shirt.

If you feel feverish in the hallway between rooms C3 and C5 it may not be a fever. It may be the 6000 degree lava pit in the middle of the hallway.

Please follow the arrows around the lava pit. This will help you maintain proper social distance.

Personal items thrown into the lava pit cannot be retrieved by staff.

Tenemos que mover estos refrigeradores, tenemos que mover estos televisores a color.

Watch out for that bald guy wandering around with his mask on top of his head like a weird toupee. This isn’t an item of concern but, really, what is his deal?

We don’t need to tell you to maintain proper social distance from the guy wearing his mask on top of his head. You can figure that one out for yourself.

We are aware there are teeth marks on the shovelnose sturgeon.

If your doctor attempts to shake hands with you run away.

Telemedicine options are available.

Art Therapy.

It’s fun for me to take some graffiti and relate it to some aspect of art history even if, and sometimes especially if, any connection between the two is a real stretch or simply nonexistent since most, or even all, art comes from a mental leap. This time, though, I want to get more personal. I’m still contemplating my five-year cancerversary—and I know that’s a word I just made up, and I know that since “annus” is the Latin for “year” and “versus” is the Latin for “turn” and that therefore “anniversary” means “turning of the year” and cogito ergo something or other the word should be “annicancer” but that doesn’t roll off the tongue like “cancerversary” and this entire paragraph has gotten away from me and I should start over.

Back in June 2014 when I got the cancer diagnosis I spent two nights in the hospital. The second night I was taken up to a private room, and while the window basically looked out at a brick wall because it was in a wing that was a fairly recent addition I could walk down the hall to a window that looked down at a stretch of 21st Avenue I knew well. I sat at that window for a long time wondering what was ahead of me, looking down at places that held so many happy memories for me, and wished I could be down there. Really I wished I could be anywhere other than a hospital room, but there was something especially frustrating about being so close to places I’d not only much rather be but that I could imagine so clearly.

One of those places was the Sportsman’s Grille where I’d had a few beers. Really I’d had more than a few beers there–in college I did this Dylan Thomas impersonation. I’d imitate his voice and recite “Do Not Go Gentle Into That Good Night” and guzzle an entire pitcher of Gerst beer in between lines and sometimes, in another imitation of Dylan Thomas, do that three or four times in one night, which would amuse my English major friends and horrify my pre-med friends, but that’s another story.

The Sportsman’s Grille also had an upstairs pool room and it was the only place I knew–and still know–in Nashville that had a snooker table, which is larger than the standard table used for 8 and 9-ball. And I love snooker. It’s so unbelievably complicated it’s best played sober, although I think the reason it’s unbelievably complicated is because whoever wrote the rules had to be drunk at the time.

Anyway the Sportsman’s Grille was brightly lit that night and as I sat at the window, almost certain I could hear the click of billiard balls and maybe even a voice slurring, “Though wise men at their end know dark is right…”

The Sportsman’s Grille in that location is closed now, and the building is currently empty. There’s a billboard over it and someone, or, from the look of it, a couple of someones, added their own tags to the back of the billboard. They’re stark and simple although really well done, and I can’t explain why but it makes me happy to see them up there. I’m sure there’s a reason but I can’t quite make the leap.

 

A Shot In The Dark.

One of the ongoing joys of life after cancer is that I get to have my blood regularly drawn. Fortunately I have plenty to spare and, having recently celebrated five years since my initial diagnosis, I only have to give up a sample every six months or so before regular checkups with my oncologist. And usually it’s so quick and easy it doesn’t feel like they’re drawing blood so much as making a quick sketch of it. It’s a different nurse every time, although they all always tell me, “You’re going to feel a little stick,” I also get to make the same joke. When they slide the needle in and all I feel is a slight pinch I exhale and say, “I can tell you’ve done this before.” I mean it as a compliment and it always makes the nurses laugh, and of course making the medical team laugh is my top priority even though it should probably be my health. I also wish just once a nurse would tell me “You’re going to feel a little prick” so I could say, “You could at least take me out to dinner and a movie first,” but that’s another story.

Anyway the other day I went in to give up a blood sample and instead of the usual routine I said to the nurse, “So, first day on the job?” because it felt like I’d just had a piece of lead pipe jammed into my arm. Then I said, “Boy, that’s gonna leave a mark.” The nurse kept on with what she was doing so I said, “Are you using the whole fist?” None of this made any impression on the nurse, but she did ask, “Do you have any plans for this Fourth of July?”

“Well,” I said, as flashes of pain popped in front of my eyes, “I have just gotten a preview of the fireworks.”

Four And Aft.

It’s been nearly four years now since I finished chemotherapy. So far there’s no sign of it returning, which is good. I never want to go through any of that again, and I don’t take the fact that I’m healthier now lightly even though there were too many things I took lightly at the time, too many things I regret.

My last day of chemo, September 22nd, 2014. wasn’t the end of my cancer treatment—and technically it’s never-ending since I’ll need checkups and scans for the rest of my life, but it’s the anniversary I’ve chosen to mark because chemo was unlike any other part of the treatment, unlike anything I was prepared for. The first day I went in for chemo, in early July, I was terrified. What would it be like? What was the process? The clinic I went to put patients in individual rooms and as we passed by one with a bed I wondered, should there be straps? Will they knock me out, cut me open? Well, I thought, as we passed machines and bags of fluid and needles and nurses in crisp uniforms, it’s too late to ask now. I wanted to ask sooner but I also didn’t want to bother anyone, the same reason I put off going to the doctor about the pain in my leg that had been keeping me up nights for at least a couple of months, or why I didn’t even notice the swelling that was also a symptom of cancer, a symptom that, if I’d noticed it sooner, could have been treated with surgery. I could have skipped chemo entirely but I had to go through three rounds of getting toxins pumped into me because of the toxic combination of taking my health for granted and not wanting to worry anyone.

Last day. Don’t let the smile fool you.

When I was diagnosed my wife stepped up and took on a lot more responsibility than she should have, partly because she’s worked in the medical field and has a lot of experience and knowledge and partly because I acted like a complete jackass.

There’s a saying that tragedy plus time equals comedy. Most of us, I think, apply the word “tragedy” to epic events that affect large numbers of people, but tragedy can be quiet and personal too. Cancer was my tragedy and went into it joking. People would ask me about my diagnosis and I’d say, “It’s a funny story…” In the cancer clinic nurses would come in to give me injections and I’d ask, “What are today’s specials?” Or when one of my IV bags was empty I’d page them and ask for a refill. My second day of chemo I came in with the same IV from the day before, for convenience, and when they start giving me my cocktail—“Could I get three olives and a little paper umbrella?”—I got an intense burning in my arm and tolerated it for about twenty minutes. It wasn’t a macho I-can-take-this attitude. It was the I-don’t-want-to-bother-anyone attitude. When I finally told a nurse she had to consult another nurse who explained that irritation sometimes happens if they use the same vein two days in a row. It wasn’t anything to worry about but she had to remove the needle and stick another vein. In that first week I noticed my jeans were getting tight but I assumed that was normal and didn’t want to bother anyone with questions. It was my wife who noticed my right leg was swollen and told the doctors who believed it was probably just excess fluid but sent me in for an ultrasound anyway to rule out anything serious. When I started my second of three rounds of treatment I made jokes about losing my hair and chemo being boring because I didn’t want anyone to know how stressful it was to spend hours sitting alone with a needle in my arm. Sometimes I had to go to the bathroom, dragging my IV stand with me, and once wandered so far away from my room I couldn’t find my way back. A nurse recognized me and asked if I was lost. I laughed and said, “No, I’m taking the fifty-cent tour,” because I wouldn’t admit I was scared and confused. One morning when I was waiting to start treatment a nurse came out to tell me my white blood cell count had crashed and all I thought about was whether I’d still be able to go out to a baseball game while they checked with the doctor to find out if I could continue treatment with a compromised immune system. When I went out in the sun I developed a red, itchy rash and ignored it. My wife noticed and contacted the clinic to find out if sensitivity to sunlight was something to be worried about. It wasn’t, but my own lack of sensitivity was and resulted in a pattern I’d keep going through. It was a pattern of telling myself I didn’t want to bother anyone only to end up causing a lot of unnecessary trouble. It didn’t end when the chemo did either. I developed migraines which I tried to hide because I didn’t want to bother anyone. It turns out all I needed was medication but even at the time I asked myself, what if they’d been a symptom of something worse? And it’s taken me almost four years to understand just how deep, and dangerous, my denial was. It was rooted in a very firm delusion that if I pretended nothing was wrong nothing would be wrong, which, in hindsight, I know was making things worse. Contrary to the saying about tragedy, time, and comedy my cancer experience has gotten less funny as it’s slipped farther into the past.

The fourth anniversary may not have the same cachet as its odd neighbors but this one is still significant because I’m glad the cancer is gone, I’m glad it’s over because, in spite of the way I acted, it wasn’t fun, it wasn’t exciting, and most of the trouble I caused could have been avoided if I’d been more responsible, which is why, yes, I wish I could do it all over again.

Odd.

A year ago I said, “Ask me how I’m doing a year from now.”

So, how am I doing?

Even at the time it seemed stupid but when my second anniversary of being cancer-free came around I was in an emotionally very dark place. Cancer was supposed to change my life, but year two was when I started feeling that it hadn’t really changed anything. It’s not something I should complain about because my life before cancer was good and being able to resume that life, with a few small changes, was something I should have been happy about. I’ll always have the scars, but those are just skin deep, and a year after finishing chemo I was, physically, more or less back to where I was before I’d had cancer. And for most of that year I was fine, but as it went on, the closer I got to the second anniversary, the more depressed I felt about it. September 22rd, 2014, was my last day of chemo. When I was still in treatment I met and heard about people who’d been through cancer and their lives had gone on pretty much the same as before, which is a great thing. There is nothing better than to be able to say, “I survived”. And yet at the time I couldn’t imagine I’d ever be like them. Cancer had changed my life so suddenly and yet, in the middle of it, I couldn’t imagine life without it. I couldn’t imagine what lay beyond. My last day of chemo there was no fanfare, no great celebration. It was just another day at the clinic. I sat in a chair and let a nurse pump poison into my veins, just as I had so many other days, and when it was done I got up and walked out. A year later I hadn’t gone back to the clinic but there had been so much follow-up, so many doctor visits and consultations and new drugs that on September 22nd, 2015, I celebrated my survival even though I felt like I was still fighting cancer. And then over the year that followed, even though I had fewer doctor visits and no reason to think the cancer would ever come back it seemed even harder to accept that it was over. I wondered what “over” meant. On September 22nd, 2016, I looked back on what I’d been through and, difficult as it had been, all I could think was, is that it? The cancer, as far as I knew, was dead and life was back to normal. Was that what I wanted? Shouldn’t things be different? Why had I survived?

What a long strange trip it was.

Last day of chemo–and I couldn’t process it at the time.

Yet I said “Ask me how I’m doing a year from now” because I wanted to give myself something to look forward to. I was staring into the abyss and there seemed to be a strong chance I would fall. Instead I decided to jump.
There’s something powerful about the number three. Three is lucky. Three is the smallest odd number greater than one. The smallest number of straight lines that can create an enclosed space is three. There are three primary colors, three rings in a circus, three laws of motion, three Stooges, three blind mice, three sheets to the wind, three face cards per suit in a standard deck, three miles in a league, three little pigs, three wise monkeys, three men in a tub, the third time’s a charm, there are five stages of grief but you can skip two of them, and three basic particles that make up an atom. If you take any group of numbers, no matter how large, and add them up and the result is three, six, or nine then that number is divisible by three–something that’s obsessed me since I learned it in school. I can’t look at a zip code, phone number, or any string of numbers without figuring out if it’s divisible by three. If it is it makes me happy.
There were three months between my initial diagnosis in June, when I spent three days in the hospital, and my final day of chemotherapy, which came in three rounds, in September. I would have three surgeries–the first orchiectomy, a minor one to install a chest port, and a major one to remove lymph nodes–in the six months between June and December.
So how am I doing?
Every year, every day, every second that I go on takes me farther away from cancer. Maybe it will never be completely out of my mind but I don’t dwell on it like I did. I’m genuinely glad I survived. My wife, the main reason I’m still here, tells me that, according to the doctors, technically the anniversary of my being cancer-free is in December, when I had the last big surgery. I have my reasons for picking September 22nd as my personal marker. The day I finished chemo was a great day, September is when the season just starts to change, and, hey, I’m the one who had cancer. I get some say in this. And yet while I shouldn’t take my health for granted I’ve started to wonder if I’ll even mark the occasion next year, whether September 22nd, 2018 will be anything special, other than a Saturday, and I always look forward to those. Maybe by the end of year three I’ll have stopped thinking in terms of years I’ve survived and instead I’ll only focus on being alive.
So how am I doing?
I’m good. I’m great. I’m odd.

 

The Next Step.

IBEATCANCER

Within my first week of chemotherapy I got a port implanted in my chest. This would save the veins in my arm which was a good thing because, as I discovered on my second day of chemo, one of the drugs in my cocktail could not go through the same vein two days in a row without feeling like my arm had been dipped in gasoline and set on fire. The port also meant I wouldn’t come out of chemo looking like a drug-addled rock star which is kind of a downside..

The surgery to implant the port was done in July 2014 and was one of the easiest parts of my trip with cancer. The doctors gave me a local anesthetic which knocked me completely unconscious, the whole procedure took less than half an hour, and I woke up reciting lyrics from Pink Floyd’s Comfortably Numb.

I then got stuck in the recovery room for a couple of hours waiting for someone to tell me I was good to go while a man in the bed next to me kept demanding beer, but that’s another story.

It seemed like a good idea at the time.

It seemed like a good idea at the time.

For some reason using the port was also less painful than being stuck in the arm, and easier for the nurses who wouldn’t have to hunt for a vein. They’d just take the big needle and aim for the lump.

Even after I was done with chemo I still had to get the port flushed at least once every six weeks to prevent blood from clotting in it. And this wasn’t a big deal. It meant sticking a needle through skin so it did sting a little and then they’d pump saline through it and I’d get a cool salty taste in my mouth.

It was a reminder of what I’d been through but I didn’t need it. Several times I told the nurses I thought it was time to get it removed. One nurse told me, “There’s a woman I see sometimes who’s had her port in for twenty years.”

I hope that was a matter of choice rather than necessity. Or maybe, like me, she just kept putting it off.

I’m not putting it off any longer. If you’re reading this today, December 12, 2016, this is the day I’m getting my port removed.

It’s not the end. It’s merely another step. As the saying goes the journey of a thousand miles begins with a single step, but after that first step there’s another and another and another, unless you have freakishly long legs.

I’m still on a journey and hope to go many thousands of miles more.

Update: Thank you for all the well-wishes. I’ve been successfully de-ported.

 

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