Cloud with silver lining - LIVING AND DYING WITH CANCER: Enduring "the good fight"

LIVING AND DYING WITH CANCER: Treatment, the “good fight” and accepting help

This is the follow-up to LIVING AND DYING WITH CANCER: An introduction to the year the world changed, published last month, with more monthly installments to come.

So, I had HPV-associated squamous cell carcinoma. The doctor who gave me the diagnosis told me that the “board” would review my case and determine the best treatment path.

I didn’t find this out until much later, but they refer to these boards as “Tumour Boards.” I love that name. A group of doctors with a wide variety of specialties get together and talk about the best way to treat someone’s cancer. I like to call that “a hive mind.”

They’re wonderful. When they talk to you about the tumours in your body now, they call them “nodules.” I thought that was so funny. It’s like calling a secretary an executive admin, or a stewardess a flight attendant.

There’s absolutely nothing wrong with those professions. A good secretary (like a good drummer) is invaluable, and they usually never get any of the credit. But I digress. I like “tumour board.” It is what it is.

The rad doc


Man chopping vegetables for cooking - LIVING AND DYING WITH CANCER: Enduring "the good fight"

The next time I met with someone was in April 2020. I met the doctor who’d be taking point for my treatment. She was the Radiation Oncologist. I’ll call her my Rad Doc, just because it sounds cool. We met via Zoom again. I explained to her that I was an anal software developer who thought in terms of yes/no, black/white and lots of details.

I told her, please don’t try and sugarcoat anything for me. That’s not because I’m brave, it’s because I hate cutting through the BS to get to the point. I tell all my doctors that. It has made my life so much easier, and I am probably just projecting, but it looks to me like it makes their life easier as well.

My Rad Doc explained to me what I had, where it was, and laid out a course of treatment that included radiation and chemotherapy. I’d meet my chemo doc later. I was to undergo daily radiation treatments (Monday to Friday) and weekly chemo treatments.

One of the first questions people inevitably ask me is, “What stage is it?” I respond with, “I have no idea.” I’ve met with quite a few doctors over the past couple of years, and not one has ever told me what stage of cancer I had. I’ve never asked. What difference does it make? That said, I did ask the $64,000 question: What are the odds?

I told her that both my father and mother died of cancer. I literally watched my father die, and I watched my mother wither away physically, mentally and emotionally. More on that later. They both had one thing in common. They suffered for a year, then they died. There was no way I was going to do that. I had this stupid fantasy in my head that I would do a Deadpool and take off as soon as it got bad. Seriously, that actually ran through my head. I didn’t want my wife to see what I saw happen to my mother.

After I asked what my chances were, the doctor looked down, began typing something and then shared her desktop. She said, “Based on your age, height, weight and current fitness, here are the numbers.” It took me a minute, but I saw that I had a 95 percent chance of being cancer-free when I was done with the treatment, and an 85 percent chance that I’d remain cancer free for two years.

Well, F@$# me. That wasn’t what I wanted to hear. I wasn’t going to die. I tried to wrap my head around it. My wife was happy. I’d told my co-workers, but I hadn’t told my family. There were too many unanswered questions. I had the answers now. I told my family I had bad news, but there was good news, too. From that point forward, it never entered my head again that I was going to die. The doctor didn’t seem concerned. After a while, you can read the demeanour of the doctors. So I did what I’ve always done in my life, just go with it. What other choice did I have?

A little more context, before I continue. While my wife was away, I learned to cook. Lily had done virtually all the cooking for more than 15 years. It had been a very, very long time since I’d cooked for myself. After a few months of fast food, pizza delivery and premade mail-order dinners, I started getting those food delivery boxes with ingredients and instructions. It was the perfect thing for me. No ambiguity. Everything was measured out, the instructions were specific. I learned to cook.

After I found the lump in my throat. my wife and I began to talk more frequently. One of the things we would do is talk while I was making dinner. I couldn’t wait for her to come home so I could cook for her. Since she’s come back from St. Louis, I’ve done virtually all the cooking and all the dishes. When I’d visit her in St. Louis, I could see the toll it took on her to take care of her mother 24/7. I knew she was going to come home and eventually do the same for me. I tried to do the best I could to take care of Lily.

My Rad Doc told me how the treatment would go. I would probably be OK for the first three weeks, and then it would start to get much harder. She said the last week of treatment would be the worst, and two weeks after that would be when I started to feel better. I made a vow to myself that I’d keep taking care of my wife for as long as I could, and she’d take care of me after that. I figured, if I could make it through three weeks, that would be good.

A positive career move


I’d previously eluded to a lucky break I got back in January. I’d moved to a new development team, and I was learning the Salesforce platform. It began to give me some hope. I wasn’t some old relic whose time had passed. I was an old dog, and I was learning new tricks. When I found out I had cancer, I felt cheated. All that hope went away. I felt that something good that was almost in my grasp was being yanked away, like Lucy pulling the football away from Charlie Brown.

I wasn’t surprised. That was where my head was. I’d been studying for the Salesforce Admin Certification for two months when I found out I had cancer. I was ready to take the test, but due to COVID, all the testing sites had been shut down. There were only proctored tests online. The earliest appointment was May 3, 2020.

My first radiation treatment was on April 29th. My first chemo treatment was on Thursday, April 30. Your first chemo treatment is the easiest chemo treatment you’ll ever have. Every one after that sucks. I didn’t feel all that bad on Friday. It hit me on Saturday, but by Sunday morning of May 3, I was feeling better. I signed in, took my test and passed. It may be the thing I’m most proud of in relation to my cancer treatment.

Putting up “the good fight”


Cloud with silver lining - LIVING AND DYING WITH CANCER: Enduring "the good fight"

At this point, I want to talk a little more about being a cancer survivor. People also talk about putting up a good fight: “You need to fight this thing, Marcel.” I didn’t fight cancer, I didn’t beat cancer, I didn’t do anything. All I did was not die. I didn’t fight, I endured.

I don’t like the way it sounds to say that I fought and beat cancer. What about the others that fought and died? Didn’t they fight hard enough? It’s not like that. At least, it wasn’t for me. It’s so unfair to the people who don’t survive. But I know my perspective is skewed. At that time in 2020, however, I was going to put up the good fight.

I’d go to my treatments by myself. Lily wanted to come, but they weren’t letting people into the hospital then. I went to the treatments by myself, and then I would come home, make dinner for us, do the dishes and sit on the couch we no longer have. A couch I’d virtually live on for four months.

It’s at this point when a crack in my downward spiral of self-pity began to show. I was in my car on the 80 freeway, thinking to myself, “Of course, I get cancer right in the middle of COVID. I must have the worst luck in the world.” But when I approached the Bay Bridge toll booths, there was no traffic. Something unheard of during rush hour. I chuckled to myself, “Well at least there is no traffic, ha, silver linings.” I didn’t realize it that time—it wasn’t like a switch going off—but I was beginning to see those lucky breaks that, up until then, I hadn’t.

It was more like sanding wood, or car paint, or shaping stones. It’s a gradual process. I hate gradual processes. They take patience. I’m too used to instant gratification.

So I went, day by day, to my treatments. Chemo days were the worst, because you had to sit in a chair with a mask on for more than five hours. I’d be at the hospital from 7:30 a.m. until 3 or 4 p.m. It was on my first chemo day that I became really ashamed of myself. When you go for infusion treatment (a fancy way of saying any treatment when they stick a needle in your arm), you won’t be by yourself. They have rooms with chairs side-by-side. In the UCSF hospital, there were more than 20 chairs each on three different floors. The first day I walked in, they were all full.

I thought I was special. I thought I was the only one who was unlucky enough to get cancer during COVID. Ha! If you’ve never seen anyone with brain cancer get treated, you should. It’s quite an ordeal. Most infusion centres have privacy curtains that can be pulled closed. Most of the time, people didn’t use these. If I bet every time that the person behind the curtains was getting treatment for brain cancer, I’d be in the black.

It suddenly felt that feeling sorry for myself was… selfish. I could see everyone sitting around me and suffering. I didn’t know who was going to live and who was going to die. I knew I was going to live. I didn’t want to make a big deal of my treatment. I felt I was the lucky one in the room.

And that was my routine. At around two weeks, I started having trouble eating. After three weeks, I’d stopped altogether. I kept cooking for Lily. I kept doing the dishes. Other times, I sat on the couch and stared at the TV. I’d gone on medical leave, so I had plenty of time. I was working for a company that had a six-month benefit that let me go through my treatment without worrying about my paycheck. I got lucky again.

I had all these illusions of grandeur. I was going to keep studying the Salesforce platform, I was going to watch all these Netflix series I had wanted to see. Ha! I got through one series after my first two weeks of treatment, but I couldn’t keep my focus, so I didn’t study. I didn’t do all those things I had time to do.

I sat on the couch. I watched the Food Network a lot. I watched disc golf on YouTube, and my mind wandered and I thought about my future. I didn’t like it. I was going to go through all of this treatment and end up back in the same place where I started. Unhappy. So I just sat there and endured. What else was I going to do?

Accepting help


Around week five, when I was making dinner for Lily, I almost passed out and fell down while taking the flautas out of the oven. I hadn’t hit the wall yet. I hadn’t turned into a hot mess yet, but I was done taking care of Lily. It was her turn to take care of me.

I kept going to my treatments alone. I was going to go for as long as could. I didn’t want Lily to have to take care of me, like she had to take care of her mother and I had to take care of mine. So I pushed more. In hindsight, it was probably stupid to do so, but on the other hand, it might have been good for me. Who’s to say? But after my last chemo appointment, I was worried about driving. I needed help.

Lily had to drive me to UCSF for my last radiation treatment. When I was done, they let me ring a bell. They gave me a certificate showing I made it. I even got to take home the mask they’d put on my head and snap to the table so I wouldn’t move. I like to look at it from time to time. Lily had sat in the car in the parking lot for over two hours waiting for me. I walked out of the hospital with my mask in hand, thinking that the worst was over. It wasn’t. This is when I truly began feeling sorry for myself.

Feeling sorry for yourself, in my opinion, is one of the most selfish things a person can do. I know, logically, that pain and suffering of any kind is relative, but that’s a cop-out. I first realized my selfishness when I walked into that infusion centre. It was so obvious. I didn’t start recognizing some of my other selfish behaviour for a few months. First and foremost was the selfishness related to my father’s cancer. When my father had cancer in 2000, I lived in the Bay Area and my brother lived in Southern California. He took care of my 80-year-old father.

He took him to his treatments. He drove over to their house at all hours of the night, when my mother couldn’t deal with whatever was happening. My brother was still working. He was driving all around Southern California in that horrible traffic. It nearly killed him. I don’t remember him ever asking for help. I do remember that I never once offered mine. The worst part is that it never even occurred to me to ask. How selfish was that? I was too wrapped up in my own petty problems that it never even occurred to me to help someone else, even my own father and brother. It’s one of my biggest shames in life.

It wasn’t until months into my recovery that I asked my brother for forgiveness. I’m still a selfish person. It’s one of the things I’m working on. It’s one of the reasons I decided to volunteer at the food bank. But I’m getting ahead of myself again.

The growth of gratitude


The word "gratitude" typed on typewriter - LIVING AND DYING WITH CANCER: Enduring "the good fight"

Eventually, we got home from my last treatment. The days and weeks went by. I didn’t feel better. I felt worse. Feeling good again wasn’t even a light on the horizon, so I grabbed onto that self-pity blanket of comfort and hung on tight. I had even more time to think about myself, my past and my future. None of it made me feel better. I either hated myself for the things I’d done, or winced at what my future held in store. What I didn’t realize, at the time, was that cancer saved me. That was my biggest, luckiest break of all.

Cancer kills people, but for me, it truly saved my life. I didn’t realize just how dead inside I was. I was the proverbial frog in the pot of boiling water. It had taken so long for the water to boil, I had no idea I was dying inside. I didn’t know it, but I was about to become a cliché. The luckiest break of all was that I had gotten cancer. How crazy is that to say? How pathetic of a life was I living that having cancer was better than not?

I didn’t know then, but I know now what a gift I was given. I cringe when I say that cancer was a gift. Ask the thousands who die each year if they think it was a gift. That’s why I said, earlier, that there’s no magic bullet here. How can someone be inspirational when it just comes down to blind luck?

The one thing that does make me feel good about myself is that I’ve begun to appreciate this luck without feeling guilty about it. I’m doing the best I possibly can to make sure that I don’t waste the gift I’ve been given. And that gift was gratefulness. For maybe the first time in my life, I’m grateful for what I have. I am grateful for every day, but I’m most grateful for the people I’ve let into my life.

When I finished my treatment in July of 2020, I wasn’t grateful. I didn’t feel lucky. All I felt was self-pity. I was done with treatment, but I had no idea if I was “cured.” I was going to have to wait until I got scanned in October. So I sat on my couch and waited to get better.

Cancer treatment is one thing. Recovery from cancer treatment is quite another. With treatment, there’s an end date. I know. They gave me a schedule and everything. There’s no scheduled date for recovery. Sometimes you think you’re never going to recover. With treatment, I knew all I had to do was last “X” many days. With recovery, you don’t know how long it’ll take. There’s a lot to be said for knowing the end date. It takes all the pressure off.

My Rad Doc told me the truth about my treatment, except for one possible exception. She said I’d start getting better two weeks after the end of my treatment. After two weeks, I was still getting worse. Two months later, I wasn’t any better, at least not in any way I was able to perceive. I began to wonder if I’d ever feel “normal” again.

This is the second in a series of monthly installments about the author’s journey through illness, so check back in November for Part Three.


images: Depositphotos

  1. Thank you, Marcel, for taking readers through what you saw, felt and learned in these experiences which you’ve come to see as a precious gift. The “hall of mirrors” of the infusion clinic, your recognizing when it was time to stop being “the helper” and tell your wife you needed her help now; the ordeal you describe at the end of this installment, of not feeling better when you “should have” according to the doctor.
    I feel enriched to have gone on a bit of the journey with you.

Your email address will not be published. Required fields are marked *