Life After Tonsil Cancer: How One Woman Learned to Love Food Again
Lisa Reed was diagnosed with an aggressive form of tonsil cancer in 2007 at the age of 42. Although many cases of squamous cell carcinoma in the head and neck are linked to human papillomavirus (HPV), Lisa’s cancer was not. And the treatment for her cancer type was much more complicated than other forms.
Despite the odds, Lisa is thriving in remission 11 years after her diagnosis. But losing part of her tongue during treatment meant she had to relearn how to enjoy food, which involved getting reacquainted with her blender (turns out you can drink pot roast — and it’s not bad).
HealthCentral spoke with Lisa about her cancer journey and love for food; she hopes her drinkable concoctions will inspire others with head and cancer to rediscover their taste buds with a recipe book due out in May 2018 from the Head and Neck Cancer Alliance.
HealthCentral (HC): How were you diagnosed with tonsil cancer?
Lisa Reed: I kept feeling like something was stuck in my throat that I could not swallow. After many visits to a local ENT [ear, nose, and throat doctor] with zero results, I finally got her attention when a finger-like growth appeared on the left side of my throat. I swear, everybody thought I was a hypochondriac and a drama queen, but I was persistent that something was wrong. She scheduled me the next day for an outpatient surgery to biopsy it and send it directly to pathology while I was under.
[The biopsy ended up testing positive for cancer.] Long story short, the ENT removed [the whole thing] even though [she was supposed to leave it if] it was cancer. The [follow-up oncologists] had nothing to look at. A high dose of radiation was recommended since they were not sure if the ENT had left clean margins. When I say high dose of radiation, I mean brutal dose.
HC: What was the hardest part of your diagnosis?
Lisa: Preparing yourself physically and mentally is a feat in itself. You also find yourself hiding behind a fake smile as to not worry your love ones. Putting up a front is exhausting.
For me, though, breaking up with food was without a doubt the hardest part. You feel as though you have been dropped into a foreign land where you don't speak the language. You are forced to learn how you fit into this new life you are suddenly thrust into. Not having the same energy or abilities you once did is frustrating.
But then, on the other hand, life takes on this whole new meaning. It's a transformation you go through. I found myself evaluating life and its meaning: How do I live my best day today? I was given roughly a five-year life expectancy. At first, I was devastated — but then I saw it more as a strange blessing. It's like getting permission to only have to live in the moment. There was a calming beauty in that. I didn't have to make long-term goals or plans, or even worry about retirement. I was living for the day, and in doing so, I really soaked it all in: the way the sun felt on my face or how much I love when the wind blows through my hair, the birds singing and how the daffodils bloom faithfully in the earliest of spring.
HC: What have you learned that could help someone else in your position?
Lisa: Practicing good nutrition and getting plenty of rest is vital. The body does its best work when at rest. It does have the incredible ability to repair itself if given the proper tools and cooperation.
No one knows your body better than you, so pay close attention to anything out of the ordinary. Even if something seems silly or insignificant, in many cases it is an indicator of something else going on.
Take your medications as prescribed and if you are in pain, speak up. Pain management is extremely important to be able to function.
It is always a good idea to have someone accompany you to appointments, if possible. For one, you are on medication that can leave you with serious fatigue. And we don't always catch all the information being given to us. Having someone else there to take notes is extremely helpful.
Last but not least, allow yourself a pity party if the mood strikes. Get mad — get really mad — if you like.
HC: How did you find success in making your food delicious again?
Lisa: When I had the feeding tube, it was easy to juice many different super foods. Taste wasn't a factor since it went directly into the tube.
But, let's face it: Food is the center of our lives. We gather with friends and family over food. We celebrate and entertain over food.
Nothing tasted the same once I was able to eat [again after losing part of my tongue during treatment]. I was working off of gravity, so I was only eating what I could drink. I basically lived on smoothies and milkshakes.
Once my energy level improved, I began to experiment in the kitchen. I began with soups. Things I once loved, I could not stand for a while, so I had to think outside the box. I researched nutrition and decided to use more herbs for flavor. I had a hard time swallowing meat, so all my soups had to be of a drinkable consistency. I found I could swallow lobster bisque. I also learned that drinking milk with my meals helped me swallow thicker consistencies. Also, I found out a pot roast meal was actually delicious even though I had to put it in a blender.
My body actually guided me along the way. It was craving healthy, delicious foods, and the more I took notice, the better I felt. In turn, it motivated me more to try anything and everything.
HC: What was it like to hear the news that you are in remission?
Lisa: Besides the first day I learned of my cancer, I never really thought about dying until that day [I found out I was in remission]. I have to admit, I was a nervous wreck. But honestly, it was bittersweet. My fiance left six months earlier, saying he wasn't prepared to watch me die. Cancer had taken its toll on him. I couldn't really blame him, though. We saw a beautiful life ahead and cancer was not part of the plan. I called my two best girlfriends in tears. They didn't quite understand my tears until I was finally able to blurt out, "I made it!"
As I have proven, I am a survivor.
Interview has been lightly edited for clarity.
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