December 4, 2023


I was sitting in the passenger seat of my dad’s RAV4, listening to a combination of heavy rain and Tracy Chapman’s Fast Car. It is not usually an appropriate song for Toronto traffic but at 6:30 at night on University Avenue there is not much going on. The soothing and melancholic melody seemed to fit the moment. It had been a long day, 10 hours at the hospital, and at least another hour and a half before we would get home.

Bandages covered my arms from a half dozen or so blood tests. Where they put in the IV was a dull cold pain as if they had left a small metal rod in the middle of my forearm. I looked back at my red and black backpack sitting on the back seat. It contained two fantasy novels, a Dungeons and Dragons adventure guide, my gaming laptop and over 100 capsules of an experimental drug that might just contain the cure to my cancer. ”

The full story of my cancer journey from diagnosis to now is a long one. It involves a huge cast of characters. There will be a grieving mother terrified of losing her baby boy, a stoic father who somehow manages to always be there despite starting down a new career path, a fiery older sister, a new brother-in-law, 13 doctors and dozens of nurses. Like any good cancer story, it is full of drama, tears, pain, blood and vomit (thanks, chemo). The problem is that it also spans four and a half years. The short version of the story takes about 20 minutes. So I will give you the short, short version.

The cancer is called rhabdoid sarcoma; it has no risk factors associated with it and no genetic predisposition. In short, it is entirely random. It is an extremely rare cancer that mostly affects children. I was 21 when I was diagnosed. The first thing that the doctors told me was that they were unsure of how to treat an adult with this disease, so they decided to try the treatment they use on children and see if it worked. Unlike other medical treatments which are toned down for kids, chemo is actually far harsher. Kids, it turns out, are a lot tougher than adults.

The prognosis was very close to terminal. The tumor was in my pelvis and was almost the size of a basketball. Deciding to accept treatment was a gamble, a roll of the dice; there was no guarantee it would work. Treatment involved nine rounds of chemo, 28 rounds of radiation and three major surgeries. It also required another three corrective surgeries and a half dozen or so procedures.

My first surgery lasted 22 hours, and I almost bled out tw
ice. They took out my tumor but also took out my bladder, prostate and a bunch of my intestines. It also left me with back problems, nerve pain and a bad leg.

During recovery, I had to learn how to walk again, which I now manage to mostly do without a limp. I almost died of an infection, and one of my wounds opened up. It took three months for it to close again.

After all of that my cancer decided that it didn’t very much feel like going away forever, thank you very much, and decided to set up shop in my lungs. This required lung surgery. They got the cancer out and only had to take a little bit of lung. A year later they found more cancer in the same lung, and so the surgery had to be repeated. For those of you who smoke, let me tell you, your future is not particularly pleasant.

A year and a half after the last surgery, I was feeling good. I had finished my first year at Conestoga, I was starting to date again, and then I was told that the cancer had moved into my other lung. My oncologist gave me two options. A third lung surgery, or an experimental drug that could potentially “cure” my cancer or, at the very least, stop it from spreading and growing. I opted for the experimental treatment.

Now I take eight pills a day, four in the morning, four in the evening. The side effects are relatively mild, a little nausea and some heartburn. I do, however, have to go to Toronto more than I would like, every two weeks. The trial also involves a lot of blood tests but it still beat surgery.

There is not much I can say about the drug I am taking – clinical trials are like that. I can say that it is designed to target proteins in rhabdoid sarcoma and related cancers. Without the protein the cancer cells break down and die.

It does, however, make a normal life difficult. I am 25 now and my life is the furthest thing from average that I could imagine. On the surface it is not that different. I look like a relatively fit guy somewhere between 25-30, I’m bald (thanks, chemo), which is a bit abnormal but my beard helps make up for it. A physiotherapist might catch my slight limp but that is about it. Below the surface, however, things are different. My body is a patchwork of scars. There is the big one which runs from my sternum down my stomach to my pelvis and curves into my groin. I have another on my butt that split open following my first surgery. The one on my back is from my two lung surgeries, the one on my chest is where they put the power port in and there is one on my stomach.

More noticeable than the scars is a plastic bag which hangs off my stomach. It is my stoma. My urine goes into this bag. It also is one of the biggest sources of body shame you could imagine. I say one of the biggest because I used to have two stomas. Thankfully the other one, which dealt with my more solid waste, has been reversed. The only reminder of it is the scar on my stomach.

Unfortunately, the surgery that restored my digestive system also gave me several digestive problems. There are a lot of foods which give me problems now that never used to, which means I spend more time on the toilet than I would like.

All of these things make it hard for me to do normal things. Working out, for example, is hard when you have a weak leg, and stressful when you’re constantly worrying if your shirt is covering your bag. It only takes one person openly staring at you as if you are some sort of freak from a low-budget horror movie to turn you off of the experience.

By far the most difficult thing is dating, which, if I am honest, is already one of the hardest things to deal with in life. For me, I don’t just have to worry about the normal stuff like “how much affection do I show?” or “how do I ask her to be exclusive?” I have to find a way to tell someone, “Oh, I have cancer, and a bag of urine attached to my stomach and a few other problems.” Just thinking about it is nauseating or maybe it’s the pills.

The worst part about it all is the isolation. Nobody understands what it is I am going through. If you go through a breakup people have an idea of how that feels; people know how to react. When you are battered, bruised, scared, exhausted and living with a disease that could kill you, nobody knows how to react.

At this point you must be thinking, wow, this person’s life sounds rather unpleasant and he sounds rather miserable. You would be wrong. Amazingly, despite all the things I have to deal with I am genuinely happy. How could I not be? At the end of the day I am alive, and there is a chance my cancer will be cured. Here is to hoping the dice fall in my favour.

2 responses to “Living with Cancer

  1. To our Dearest Scott, first thing we want to say is, you are the bravest, most awesome person that we know now or will ever know. Nobody (except your Mom and Dad and Sister and Brother-in-Law) know the pain and suffering you have endured, but, what stands out, Scott, is your happy smile and your gentle soul.You are our inspiration, our pride and our joy. We love you with all our hearts,and we will always be here for you, cheering you on. We know that you will always meet the next challenge with a cheerful attitude. You are our ROCK!! Go Scott!!
    Grandma and Papa.

  2. Hi Scott,
    I am sorry for all the pain and suffering you had to go through, and I deeply admire your courage, resilience, and spirit.
    You are an inspiration for us all and I have the feeling that you will be ok in the end.
    You are also a naturally gifted writer.
    Keep up your good spirit and keep writing.
    God Bless You and your family !
    Best wishes,
    V. Gosav

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