What an experience that was. For anyone who has cancer, has fought cancer, or been with someone who has, you know how horrible of a disease it is and how hard it is to deal with. It runs in my family; my Grandfather died of it, my Uncle died of it, and my mother died of it. It was really just a matter of time before I was diagnosed with it also. No matter what lifestyle I lived, or what I ate, did or didn’t do…it was inevitable.
Now before you read on…some of the pictures below are graphic and may not be easy to look at.
My time came in 2020. As if the world entering a global pandemic wasn’t bad enough, I was diagnosed with Cancer in April. Specifically squamous cell carcinoma of the tongue and the tumor was growing fast. I first noticed it at the end of February and I thought I bit my tongue. A couple weeks later when I realized it needed to be looked at by a doctor, the world went into a lockdown and my family doctor wasn’t seeing any patients, nor were any walk-in clinics. Everyone was closed. I had to sit and wait even though the pain was getting worse day by day. Eventually, I had to resort to talking to a doctor via an online portal and I was referred to a Ear, Nose, Throat (ENT) specialist. They never called me so after another online consult, I was referred to yet another ENT. After a short video call with him and emailing him some pictures of my tongue, he called me back “Get in here now. ASAP”. I met him at his clinic and it was just him there. His clinic was officially closed due to the pandemic but he needed to see me in person and he knew right away what he was looking at.
While I was sitting in his chair, he excused himself (while the numbing agent he injected was taking affect so a biopsy could be done), so that he could call a friend of his at Princesses Margaret Hospital (PMH) in Toronto. PMH is one of the best cancer hospitals in North America (certainly the best in Canada) and the ball was set in motion for me to go there. That night I cried myself to sleep. This was it…my turn to deal with cancer and it was heartbreaking.
A couple weeks later, there I was at PMH with an ENT Oncologist, going over the positive results of the biopsy and discussing surgery. They would have to remove a small part of my tongue to get the tumor out and replace that material with some muscle from my thigh to support the remaining tongue. I would sound a tad different but no worries overall.
They would schedule the surgery ASAP but due to the growing pandemic, all surgeries had been put on hold. Did I mention that the cancer was spreading fast? While I was waiting for a surgery date, I had several appointments for MRI’s and meetings with my oncologists and the surgeons and it became clear that if the surgery wasn’t done soon, there wouldn’t be one at all, but instead a funeral. It was about two months from diagnosis to surgery. I knew it was growing fast but I was still expecting a decent recovery. I was wrong.
My surgery date was set for June 24th, 2020. By the time it came, I had lost nearly 30pds because I couldn’t really eat anymore and it hurt like hell. I was starving. Two months from diagnosis to surgery. It was a very long wait.
The surgery itself was 10hrs long and the surgical team was surprised at how much material they had to cut out. It was far more than they expected. They removed a few teeth to access my jaw, they removed all the Lymph Nodes in my neck, and they removed 80% of my tongue. I was only left with a bit at the very back. They also had to transplant at lot more muscle from my thigh to fill the void in my mouth. This ‘flap’ as they called it, would be essentially useless. I can’t use it or manipulate it, it doesn’t move, and it has zero sensation.
I was in the hospital for 12 days while I recovered from the surgery and while I was there I had a G-Tube installed in my stomach so that I could be fed. As it would turn out, I will never eat anything every again and this G-Tube is something I will have to live with forever so that I can use it to sustain myself. It would also have to be replaced every five months or so.
Now ordinarily when someone has a cancer related surgery, they are sent home for 2-3 months to recover before beginning any other treatments like chemo-therapy or radiation therapy. They gave me two weeks. Because the cancer so aggressive and had grown so much and spread into my lymph system, they didn’t want to risk waiting. So started the next chapter.
Still raw from surgery, radiation was five days a week for three months. It was nasty and before long the radiation poisoning and burns started. I was also to undergo three rounds of high dose chemo-therapy. I would have to be admitted to the hospital (after having my morning radiation done), spend the night while being pumped full of this chemical poison, and then go for my morning radiation treatment again the next day before going home.
The chemo treatment required a lot of blood tests before and after because it wrecks havoc on the body. By the time it came for my third round of chemo, and after weeks and weeks of radiation, by blood work wasn’t looking good. The doctors concluded that I wouldn’t survive the third and final round so obviously we skipped that one. The radiation would continue though. Nausea, some vomiting, constant fatigue, and lots of pain. I was left with some nasty radiation burns of my neck with open sores and some permanent hair loss in that area. Less to shave right?
Eventually the damage would mostly heal. Mostly. And the recovery process would carry on. I was referred to a couple speech therapists to help me learn to communicate because I was unable to speak. I had to use a note pad or an app on my phone to help me communicate with people. Due to the extensive material loss, the therapists were of no help and basically said I would need to write things down for people because I wouldn’t be able to talk ever again.
Cancer has become an indiscriminate disease but fortunately cancer medication and treatments have come a long way and survival rates have improved greatly over recent years. I was lucky also to have support at home. I can’t imagine going through this alone.
A little over a year later, I have learned to talk again…sort of. I’m still a bit difficult to understand (especially over the phone) but it doesn’t take long for people to figure out what I’m saying. Sometimes though I have to rephrase things to make myself understood. Basically, I sound like I have a mouth full of marbles or a couple tablespoons of water. Due to my swallowing difficulties, I often do have a fair amount of saliva in my mouth at all times which I sometimes have no choice but to spit out.
I was also told that I would never eat again after undergoing a live x-ray swallow test to see how well I can swallow. It starts off with swallowing water mixed with a radioactive dye (so they can see it on the x-ray) and they would make it thicker each time and see how far I would get. Well by the third solution, I was choking on it. It wasn’t even half as thick as a smoothie yet. Maybe as thick as the cream that you find in a coffee creamer.
At least I can still enjoy a beer but that’s one of the few drinks that I still enjoy. Everything else tastes horrible. I used to love coffee…now I can’t stand it. Juice? Nope. Soft drinks? Nah.
It’s been one hell of a journey and experience and I wouldn’t wish it on anyone. I knew one day I would have to face this but honestly I thought it would kill me. So far, I’m the only person in my family to be diagnosed with cancer and survive it. At least for now.
Now it’s on to the next adventure!