May 13, 2019
5 lessons I learned during tonsil cancer treatment
BY Jeff Deatsman
MD Anderson is a very humbling place. When I was there for my tonsil cancer treatments in late 2016 and early 2017, I’d always see someone who was worse off than I was. That gave me a better perspective on my own situation. But surgery, chemotherapy and radiation therapy still took their toll, and some days felt harder than others.
Here are five things I learned from that experience.
1. Keep a “bucket list” of places to eat. When eating hurts and nothing tastes good, it’s hard to stay motivated to feed yourself. So I lost a lot of weight during treatment, despite drinking countless meal-replacement shakes. One reason was because swallowing after a tonsillectomy is pretty painful. And eating only got more challenging after I started chemotherapy and radiation therapy.
The first couple of weeks weren’t so bad. I noticed a slight metallic taste to my food, but I could still eat a steak and enjoy it. Just a few days later, though, I had a hard time eating a single chicken wing, and soon I was struggling to consume even 1,000 calories a day.
I worked around that by thinking about all the places I wanted to go once I could eat and taste normally again. It actually helped my appetite a little bit, because all of those things still sounded really good; I just couldn’t enjoy them right away. But it made me hungrier and gave me something to look forward to. I’m still working my way through that list.
2. Be patient with yourself. I’d been warned that the side effects of radiation therapy (such as red, painful, peeling skin) are cumulative, so they get worse as time goes on — and continue to evolve even after treatment ends. In a way, I was prepared for that.
But there’s also a way that I felt like once my treatments ended, I should just be done. I finished mine on Feb. 10, 2017. And afterwards, I was like, “OK, that’s over. Let’s move on.” But it didn’t quite work out that way. Because healing takes time. I wish I’d been more patient with myself.
3. Do your stretching exercises. I’ve never had lymphedema, even though Dr. Michael Kupferman removed about 35 lymph nodes from my neck along with my left tonsil on Nov. 14, 2016. I still have considerable stiffness in my neck from the surgery and radiation therapy, though, so I have to do stretching exercises twice a day.
The exercises won’t ever make the stiffness go away, but they will help manage it. I’ll probably need to do the stretching exercises forever. But they only take about five minutes, so it’s not a big time commitment.
4. Find strength in your support system: One thing that helped me stay positive was counting down the days until I finished treatment. Each morning, I’d text one of my friends that number. And within a few minutes, he’d text me back a list of famous athletes who’d worn it on their jerseys.
That may seem silly. But to me, the small daily connection with my friend was very motivating.
My wife also provided a ton of support: from cleaning out my neck drain after surgery to cutting up all the pills I needed to take into smaller pieces so I could swallow them. She sat with me during my chemotherapy treatments, put food in a blender so I could eat it, and so much more. She definitely deserved that bunch of roses I sent her on Valentine’s Day 2017 right after my treatments were over!
5. Appreciate the fringe benefits: Obviously, I never would have chosen to have cancer, but it did come with some unexpected benefits. For one thing, I used to be deathly afraid of needles. I would actually pass out sometimes just at the sight of one coming toward me. Now, I’m like, “Oh. Another needle? Whatever.” So that’s great.
I also didn’t totally mind shedding so much weight. I’d been trying to lose weight deliberately before my cancer diagnosis, and had actually succeeded in dropping about 20 pounds. At my skinniest, I only weighed about 172, so I’m glad I’m back up to a healthier weight for my height. Still, my older son joked that having cancer almost made me healthier, so I see my unintended weight loss as a silver lining.
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I wish I’d been more patient with myself.