Surviving Stage IV Tonsil Cancer - 7 Years and Counting

by Debbie Pepin

Editor's note: Our Guest Blog Post today is from Debbie Pepin, a 7 year survivor of head and neck cancer. (tonsil) She shares her story from going to an annual health exam to being a cancer patient fighting for her life. 

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Healthy, happy and busy, at an annual exam my GP suggested I show my enlarged right tonsil to an ENT in February 2011. I hadn’t known that we have 3 sets of tonsils – the palatine are what people usually refer to that are on both sides of the back of our throat. The other two sets are the pharyngeal (adenoids) behind our nose and the lingual at the back of our tongue.

The great bedside manner ENT looked at the enlarged tonsil – yes this was the palatine (which I hadn’t had removed as most of my childhood friends had). “Tonsil stones” was his diagnosis. They are not uncommon and usually caused by bacterial build up. They are calcified materials in a tonsil. They can cause pain in the ears and throat, make it hard to swallow or lead to blood in the mouth. The patient can have an unpleasant breath smell. I had none of those symptoms. On the other hand, I wasn’t losing weight (be careful what you wish for). Cancer frequently shows up with unexplained weight loss.

“Clean it more – be gentle but use a long cotton swab. Be aware.” I saw him monthly for over a year with nothing changing – the tonsil stones did not change size and there were no other symptoms. “Just return to see me every six months” he said in June 2012.

Within two weeks of that appointment I went to clean the large tonsil and blood came out. I thought I had pushed too hard so I was extra gentle for a few days but the blood continued. I saw the ENT and he turned almost white. “I am going to biopsy it right now. It will hurt. I am so sorry.”

Two days later I got a phone call from the doctor himself. He was about to get on a plane for his annual family vacation. “I am so sorry. I should have biopsied earlier. I think it was caused by HPV and at least that treats easier but it will take weeks to get those results. Here is my recommended oncologist information….” I don’t think I heard much more of what he said.

The rest, as they say, is history. Decisions about how to proceed included considering robotic surgery (UPMC in Pittsburgh) which my more advanced stage – unsure of labeling – made impossible. MD Anderson as a cancer center leader and in Houston (vs. our Austin home) wanted me to agree to days of testing – most of which were to be duplicative of what I had done locally already.

My loving and scared husband dropped everything to research. But one day I awoke and said “enough. I want to sleep in my own bed. The treatments are going to be about the same. I want to call Dr. Steve at Austin Cancer Center and get going.”

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He had strongly recommended 40 radiation treatments and 8 weeks of cisplatin (chemo). In the end my husband became more proactive and insisted on only 33 radiation treatments (to keep it under the less harming 60 gray). My hearing made me quit the chemo after 5 sessions. I was hospitalized for my final three treatments.

It wasn’t a “walk in the park” as people say. I was scared. I was sick from just about everything. I lost a lot of weight very quickly. A special non-insurance supplemented nutritionist recommended Scandishake which probably saved my bacon from a feeding tube. I didn’t want to see friends. My neighbors didn’t even know.

There are changes now 7+ years post treatment. I drink a ton of water. I lost a good bit of hearing and wear hearing aids. My thyroid stopped functioning just about two years post treatment so I gained weight for no apparent reason (again be careful what you wish for). My teeth are very healthy considering but they hurt (neuropathy?) and I have to wear a night guard religiously.

I can do everything I ever did before and more. I try to remember how luck I am every single day but it slips away when I let minor frustrations win. I am human. I am lucky. I am strong!

I credit several things to my healthy survival –

1. My husband and I have been 3 times a week workout partners since we were dating (about to celebrate anniversary 27). I kept working out until I was just too weak. Frequently I still went to the gym with him and brought a book. It took work but my workouts are great.
2. I refused a feeding tube. I knew that swallowing would always be an issue and I realized that not needing to swallow at all would just prolong my recovery. My oncologist agreed reluctantly but wrote a weight on a piece of paper – handed it to me and said “if you get to this weight I am shoving in the tube. You will have no choice.” I came within .5 of that weight.
3. I never let myself spend a full day in bed other than the final three in the hospital.
4. I started a caringbridge.org journal online log to keep people informed which most of the time I completed myself.
5. My husband loved me unconditionally giving up his own life for mine. He was the best nurse I could have ever asked for even if he did cook onions once (for himself) and the smell sent me hiding in a faraway closet corner.
6. I wanted to live life fully including the ability to taste red wine. My lead doctor had said “sorry Deb but you will most probably not be able to discern red wine after all this.” My response was “yes I will. I will bet you.”
7. I agreed to have amifostine injections to both protect the kidneys from the harmful effects of cisplatin and to decrease dryness in the mouth caused by radiation.
8. I kept making plans for my future! Sure I had to cancel things, but as of January 2013 I was getting back in the saddle full steam ahead!
9. I held my own celebration party in June 2013 including people from all walks of my life. It was glorious – the only binding of the group was “me” – and everyone shared hysterical and heartwarming testimonials about me in their life.

Debbie Pepin

Your charge to action!

1st make sure your kids and grandkids and neighbor’s kids get the HPV vaccination https://www.cdc.gov/hpv/parents/index.html
2nd listen to your body. Do you own research.

3rd keep living life to the fullest every day.
4th believe you can do anything.

www.debbiepepin.com Now What Am I Supposed to Do: A Guide to Purposeful Aging. We are all aging and don’t know when the end will come. After the death of three parents in one year (2017) I knew I had to use my experiences to help others.

Everyone has a story. Love is all around us. Take good care!

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