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A month ago I was diagnosed with tongue cancer. This is my journey of regret, joy, anger, and inter-species body modification.

The Diagnosis

It started about 8 months ago. I like to think of the me from back then as Dr. James, The Idiot. You see, I’m not a doctor, but I am an idiot who made a series of bad health decisions.

My tongue started hurting in February, 2022. It felt like a canker sore down the right side of my tongue. When it didn’t go away after a few days, Dr. James, The Idiot stepped in. His diagnosis: fat tongue. All that extra quarantine eating must have gone to my tongue and it couldn’t fit in my mouth anymore. My teeth must be slowly chewing it away while I slept. Treatment: lose that tongue-weight!

After thinking really hard about losing weight for a couple weeks, nothing changed. So I started looking for tongue exercises. Then a new thought hit me: What if my tongue got too strong? Surely a jacked tongue wouldn’t help my situation. Heck if my tongue got swole it might make things worse. So I abandoned my plan to do isolated tongue reps, and instead bought a nighttime mouth guard.

None of this self-treatment worked. If anything, my tongue hurt more. I had trouble reading to my kids at night, and had to tip my head to the side when eating to make sure nothing scraped the side of my tongue. Finally, almost 3 months after the pain started, I went to my doctor. The first thing he said when he looked in my mouth was: “Hmm… that looks weird. You should see a tongue doctor.” A few days later I saw a tongue doctor (or “otolaryngologist” if you’re feeling fancy). He took a look and said “Hmm… that looks weird. I’m going to give you some paste to try for a few weeks. Just slather it in the crater twice a day. If it doesn’t get better in 3 weeks we’ll take a biopsy.”

Wait. “Crater”? I realized that in all this time, these past three months of pain and anxiety, I had never once looked at my tongue. Dr. James, The Idiot had been too afraid of what he’d see. That night I opened my mouth, stuck out my tongue, and sure enough there was a big ole chunk missing. Dr. James was a fool for thinking tongue push ups could fix that.

I applied the paste for 3 weeks. The crater did not go away. But Dr. James, The Idiot decided my tongue felt better. So much better that I canceled the biopsy. I then spent another 3 months of pain and wishful thinking before I went crawling back to my otolaryngosaurus for a biopsy.

On September 7, 2022, over 6 months after I first felt tongue pain, 5 months after I diagnosed myself with fat-tongue, and 3 months after I declared myself cured, I learned I had tongue cancer.

When the doctor called with the results he was very calm. He explained that he thought the tumor in my tongue would respond well to surgery and that they’d do a CT scan to see if the cancer had spread to my lymph nodes. Given its size he was optimistic that the scan would be negative. Without promising anything he thought I could make a full recovery within a couple months, and be speaking normally within a year.

All told it was a very “favorable prognosis”.

The problem was Dr. James, The Idiot had jumped back in one more time. 4 hours before the otolosangeles called I’d taken a look at the biopsy results on my hospital’s web portal and read:

INVASIVE SQUAMOUS CELL CARCINOMA, KERATINIZING, MODERATELY DIFFERENTIATED, WITH ULCERATION.

Dr. James did not know what those words meant. But he knew anything written in all caps was serious. This wasn’t some shy “uh, excuse me, uh, invasive squamous cell carcinoma”. No, this was serious. ULCERATION! MODERATELY DIFFERENTIATED!

Dr. James doubled down. He googled “INVASIVE SQUAMOUS CELL CARCINOMA” and found “Skin Cancer Stage 4: the cancerous area has become invasive, spreading to other major parts of the body. Survival rate: 22.5%” By the time my otolarrygeologist called, I had convinced myself I was dying.

That night I couldn’t sleep. I kept picturing myself gone. My kids crying. My wife comforting them; raising them; crying alone after they went to sleep. And I kept going over everything I could have done to catch the cancer earlier. I hated Dr. James, The Idiot. I hated myself.

My wife is fond of a quote by Victor Hugo: “Even the darkest night will end and the sun will rise.” I took Mr. Hugo literally. After a dark and sleepless night, the sun rose and I felt better. I remembered the optimism my doctor had and began to quiet the regret and silence Dr. James.

Despite months of ignoring pain and avoiding doctors, the cancer was not that advanced, nor that aggressive, and there was a good chance that it would respond well to surgery. I felt incredibly lucky and the next 7 days until my scheduled surgery date were some of the best days I’d had in a while. My life shrank down to a series of pre-operative appointments and spending time with my family. I had lunch dates with my wife, baked with my daughter, and helped coach my son’s soccer team. It was really nice.

Over that week I also learned more about the cancer. I learned that the doctor would only describe the size of the tumor as either “more than 50% of my tongue” or “less than 50% of my tongue”. He conceded that it was probably “significantly less than 50%” and was pretty confident that I would be able to speak after the surgery. With time and therapy I would likely sound very similar to how I do now.

However my post-cut, weirdly shaped tongue could cause other complications that they wanted to avoid. He would make a game-time decision on whether or not to graft a section of my thigh onto my tongue in order to “smooth it out”. When I told my son this he asked, hopefully, if that would make me a cyborg. I said, no, it would make me a thigh-borg. 😎

A couple days before my operation I went into the hospital for a pre-op appointment. This is when things started to get serious. “Don’t eat anything the day of your surgery otherwise you might throw up during surgery and suffocate on your vomit. Don’t put any lotion or cream on your face the day of your surgery otherwise it might catch fire and burn your face off.” Oh crap. I asked… what about deodorant? Should I skip deodorant too so I don’t burn my armpits off? The nurse gave me a quick look — and I swear a quick sniff — and she said “No no, please wear deodorant”.

The Surgery

On the day of my surgery I went to the hospital with my stomach empty, my face #NoMakeup, and my armpits smelling like pure sport. I stripped down and put on the gown, trying my best not to flash everyone.

First the anesthesiologists came in and got my IV setup. The medical student trying to get my IV in was having some trouble. As the attending physician was talking the med student through it he, very smoothly, picked up my phone and put it in his pocket. At first I didn’t know what to do. Finally I interrupted him and said “Uh, excuse me… uh… I think that’s my phone?” He took it out of his pocket, looked surprised and handed it back. “Haha,” he said, “All these phones look the same. But I was pretty smooth, wasn’t I? You barely even saw me do it!” I laughed extra hard because this guy was about to put me asleep and I really wanted to wake up.

Next the surgeon came in, made sure I was all set, and signed my face.

They rolled me into the operating room and I fell asleep. When I woke up, my thigh was shaved, my tongue was covered in bandages, and I had tubes coming out of my neck. For the next couple days I tried to sleep as much as I could. Once the anesthesia started to wear off I grabbed my phone and used the camera as a mirror. It wasn’t pretty. My camera app agreed, and suggested I might get a better shot if I used portrait mode. It didn’t help.

The incision on my neck was pretty badass though. The cut goes from my ear all the way down the side of my neck. It follows the path some tough guy might trace with his thumb when he’s threatening to kill someone. So now whenever I see someone do that “you’re dead” move all I can picture is them saying “I’m gonna cut out your lymph nodes and cure your cancer, asshole. By the time I’m done with you, punk, you’re gonna be so cured, you won’t even know you were sick.”

I learned that the tumor they removed from my tongue was 3.7cm x 1.3cm x 0.9cm, or about half the size of a gummy worm. The flap of skin they took from my thigh was 4cm x 8cm x 0.5cm, about the size of one of those Trader Joe’s fruit leathers. And finally they removed 23 lymph nodes, or about 23 frozen peas. So half a gummy worm, a strip of fruit leather, and 23 peas. I know what I’m handing out for Halloween this year!

Trick or treat!

I was in the hospital for 2 days, and before they could discharge me they had to show me how to give myself blood thinner injections. The nurse told me to grab some of my stomach about 2 inches away from my belly button. She said the most important part when putting the needle in was not to go too deep. I had to stay in fat and not hit muscle. But then she looked at my pinch of stomach fat, and added “But I don’t think you need to worry about that.”

Card designed by my wife and available at her store supporting mental health: happii.today (Well wishes from my children not included)

The Recovery

When I got home everything was harder. My tongue hurt, my neck hurt, my thigh hurt. It hurt to talk. It hurt to eat. It hurt to sleep. I was under strict orders not to exert myself, but I barely had the energy to walk across the room. I wrestled with a fever that came and went. Sometimes I woke up in the middle of the night with blood dripping from my mouth staining my pillow.

It was sincerely awesome.

Every time I struggled to do something simple, I got to celebrate when I succeeded. Never in my life had the bar been set so low! My wife almost cried when she realized I could speak. When I put on shorts instead of pants and realized they didn’t rub my thigh graft painfully, I felt like the smartest man in the neighborhood. My kids cheered the first time I finished a bowl of cream of wheat. And everyone was way too excited the first time I showered.

It wasn’t all roses. I was limited to a “full liquid diet”. Which meant I could only eat things that were drinkable or almost drinkable (tomato soup, pudding, cream of wheat) — and definitely no breads or baked goods. My daughter loves to bake, but hates to waste food, so she has assigned me an important role I take quite seriously: baked goods trash can. It’s my responsibility to make sure everything is finished before she bakes again. And for weeks of my recovery I couldn’t do my job. In completely unrelated news, I’ve lost over 10 pounds since my surgery.

And, woo boy, are there a lot of tomato soups! It’s amazing! There’s your classic, your creamy, and your bisque. Maybe a little tomato basil soup or roasted red pepper for an extra treat. And the Cadillac of tomato soup: Campbell’s black-label slow kettle tomato bisque.

Campbell’s Black Label

After a hard day’s work of showering and wearing shorts, I’d kick back with a bowl of Black Label and a warm mug of beef broth.

Roughly a week after my surgery I went back to see my doctor so he could remove my tongue bandages. To do this he had to poke around my mouth a bit to snip the stitches that were holding the dressing to my tongue. My wife was in the room for moral support. To give you a sense of my pain tolerance, she noticed that I cried while the doctor was cutting the sutures. Only a little bit though. A single tear rolled down my cheek. Which is pretty damn poetic if you ask me.

During this meeting the doctor said that the skin graft wasn’t “taking” as well as he’d like. It would probably be fine, but he’d like to add something called “Integra” to help. Integra is a material that they sew onto my tongue to help it grow back. It is made from “bovine tendon collagen and shark glycosaminoglycans”. In other words once I got this grafted to my tongue I would be part-cow, part-shark, all thigh-borg. I would be unstoppable!

Shark Cow Thigh-borg courtesy of DALL-E

After I got home with my newest graft, a few of the sutures were poking my mouth, so I asked my doctor if I could cut them off. He said sure, just use scissors. Dr. James was back in action! I struggled for half an hour, but eventually was able to snip off two of the protruding sutures without cutting my tongue. I was so stoked I sent my surgeon a message:

I did it! (I think) I got that poky boi. I had to use tweezers and the scissors, and drooled all over myself — but success. I have no idea how you’re able to surgery on a tongue — that slippery guy does not want to stay still.

He did not respond.

Left on read by my doctor

Perhaps the highlight of this whole journey happened a few days ago when I was able to start having solid food again. That first peanut butter and jelly sandwich was heaven. For the rest of the day whenever anyone asked how I was doing I just said “I ate a sandwich!”

Back to normal

I started writing this post shortly after I got home from the hospital. It’s now been a few weeks and I’m having trouble finishing it. Physically I’m doing pretty good. I shower daily. I wear pants. I eat sandwiches whenever I want. Regular life has returned and the stream of little joys have dried up. Getting out of bed in the morning isn’t a show of strength. Carrying a conversation with my daughter isn’t an achievement. Cooking dinner and cleaning the kitchen is no longer an empowering step back to independence.

And I’m angry. Not at anything in particular. Just angry. The sort of anger that makes me sit and frown like that penguin picture.

That penguin picture

If I were 16, I’d probably put on some 90’s Pop Punk and run my anger out. But at 41 that doesn’t work anymore (I tried).

The anger bleeds out. My 7-year old daughter refuses to eat cereal for breakfast because she says the lactose-free milk still gives her a stomach ache, and I irrationally tell her “Fine, you make breakfast for the family next time.”

It’s a stupid anger. I know it’s stupid. I really have nothing to be angry about. I have a good life. My family is healthy. I don’t worry about money. I know this. But still I’m angry at nothing and everything. I’m angry at myself for being angry.

A few days ago I learned that the cancer isn’t completely gone. They detected something called a “Perineural invasion”. I don’t quite understand it. My doctor tried to explain. It’s something like a really small amount of cancer on my neurons. Not a problem yet, but that baby cancer might grow up and start a new tumor. And the neuron acts like a phone line or something so they don’t know where the new tumor could pop-up. I guess it’s like some kind of baby cancer making a phone call to a big daddy cancer. Maybe?

I will likely need radiation therapy. I have an appointment with a Radiation Oncologist next week when I’ll learn more about the treatment and side effects.

I’d like to blame my anger on this new development. Just me trying to cope with a new worry. Me being frustrated that I’m not out of the woods yet.

But this isn’t the first time I’ve felt this way. In fact this whole process has played out before. The first time was about 15 years ago when I was diagnosed with Crohn’s disease. Crohn’s is a chronic condition with occasional “flares”. When you’re in a flare you have to poop. A lot. Maybe 10–15 times a day. Often with high “urgency” — like hold onto your butt and run to a toilet fast.

I was in that first flare for about 6 months. At its worst I lost about 45 pounds — a quarter of my body weight — in a month. I organized my whole day around access to bathrooms. I’d plan ahead for any trip or business meeting. Sometimes I’d get dizzy and fall because my muscles were weak and my iron was low.

But, just like with the tongue cancer, I had a lot of good memories of that time. As the doctors narrowed in on the right medicine, I was able to eat more. My strength started coming back. Each day was a little better than the one before. I celebrated every pound of weight I put back on. I was almost giddy with excitement the first time I was able to take a trip to the local mall. And the first time I slept through the night without having to run to the toilet felt like I had superpowers. Every day was simple. There were challenges to overcome and I was chipping away at them. I didn’t care about next year or even next week. I was singularly focused on making it through each day without crapping my pants.

Eventually my flare ended. And regular life returned. Everything was easier, but also harder. And I remember feeling anger then too. And being angry at myself for being angry. My life back then was good. I had no reason to be angry. But still I was.

Being happy when I have a life-threatening illness, and angry once I’ve recovered? That’s some self-destructive bullshit.

So here I am again. I have a wonderful, healthy family without major money worries.. All things considered, I’m remarkably healthy. I’ve had two life-altering illnesses and it’s looking like both of them will at worst be chronic conditions I can manage without too much pain. I am lucky. But I am still angry. And I don’t know why.

So I’m taking one more note from Dr. James, The Idiot: I’m going to stop trying to think my way out of this. I’m getting Radiation Therapy for the baby cancer, and Speech Language Therapy to teach my thigh-borg how to talk again. And now I’ve added straight up therapy to help with my angry penguin problem. The journey isn’t over, but the future’s looking good.