The Journey Begins

Thanks for joining me on this journey to survive and beat HPV Head and Neck Cancer. Here’s an overview of my experience up to the point I started this blog.

I’m 50 years old and in reasonably good health so I guess I always thought that this won’t happen to me but was wrong. It’s mind boggling how life can change so quickly. We can go from not having a care in the world to fighting for our lives in the blink of an eye. My plan is to document my fight here and emerge as a better, stronger person for having gone through it.

The Discovery

I’m an Army Veteran and was a Military Defense Contractor for 15 years. I had spent 12 of those years living and working in Middle Eastern countries. I had been at home in the Midwest working for a local company for about 6 months when I noticed a painless lump on the left side of my neck in mid March 2019. I showed it to my wife who kept insisting I go to the doctor. I felt great and was in excellent health so I nervously waited about 3 weeks expecting it would go away, but it didn’t.

When I saw the doctor on April 10th he set up an appointment with Dr Huang, an excellent Ear, Nose and Throat Specialist and respected surgeon in my area. I actually saw his Nurse Practitioner who took a biopsy of my tonsil which she felt looked suspicious. She then scheduled an ultrasound on the lymph node. I waited 3 days for the results, consumed by “what if” scenarios. The tonsil biopsy finally came back negative and I was so relieved. After the ultrasound showed that the lymph node was enlarged to 2.5 cm they scheduled a fine needle aspiration biopsy on the lymph node.

This entire period seemed to take forever. In reality it was around two and a half weeks but the waiting and worrying made it feel like months.

The Diagnosis

The lymph node biopsy was positive for Squamous Cell Carcinoma. Dr Huang called me at work to give me the news. I was in shock and went home early to break the news to my wife and ponder what comes next.

Since that day everything has been a blur. A CT scan and subsequent PET did not reveal cancer elsewhere in my body which was encouraging. The Doctor still felt the tonsil was suspicious and believed it was the source of the cancer. He scheduled surgery on May 21st which included a neck dissection in which he removed 19 lymph nodes as well as both tonsils. The result was 2 cancerous lymph nodes and tumors in both tonsil. The tumor in the right tonsil was actually larger than the left, which was surprising since there were no symptoms in the right side.

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This photo was taken a few hours after surgery. There is a drain tube that was removed 48 hours after surgery when I was discharged. The XH is Dr. Huangs initials ensuring they prepped the correct side for surgery.

They also biopsied the back of my throat, areas of my tongue and I think a few other places. I was a little foggy when he was explaining it all. Everything was negative except the tonsils and lymph nodes. Dr Huang said the silver lining is that the tests were P16 Positive which means it stemmed from the HPV virus. He explained that cancers caused by the HPV virus generally respond well to radiation and chemo treatments.

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This photo was taken 3 weeks after surgery. Dr. Huang did a great job. The scar is looking better every day. The nurse said jokingly, that as I get older and fatter the scar will disappear into the folds of my neck. At least I think she was joking.

The Neck Dissection really hasn’t caused any major problems. The left side of my face and neck were numb but it feels like i’m getting the feeling back in small areas every few days. The Doc says it should all return but may take months or even years. Currently my neck constantly tingles like when your foot or hand goes to sleep and it feels like needles.

The tonsillectomy however was another matter. This is something that I wish I’d had as a child. Swallowing was really rough. I ate a lot of apple sauce, pudding, mashed potatoes, ice cream etc. I tried to switch to solid food a little too soon which slowed the healing process and delayed my recovery. Altogether it was just under 3 weeks before I was comfortable eating solid foods. I started with scrambled eggs and oatmeal and moved on from there.

I got through it mostly on Tylenol but I was prescribed Hycet Liquid which is Hydracodone and Acetaminophen in a liquid form like a cough syrup. I used it a couple of nights before bed when it was really bad. It helped a lot but I would still wake up in the middle of the night with a dry painful throat and take a Tylenol.

The Cancer Treatment Plan

I was then referred to Oncology for radiation with Dr. Ferraro and chemo with Dr Gillison. I met with both Doctors who are terrific and very informative. Working together, they have a plan to treat me with 33 rounds of radiation and 8 treatments with Cetuximab. I will be seeing my dentist on June 10th to take care of the necessary dental work and extractions to start my treatments.

From reading so many others stories I am realizing that this is just the beginning of long and grueling struggle.

I am expecting that as a result of chemotherapy and radiation I will:

  • lose my sense of taste
  • lose my saliva production
  • lose extreme amounts of weight
  • lose my ability to eat and have to live on liquid supplements for a time
  • suffer extremely painful burns on my throat and neck
  • develop painful sores in my mouth
  • develop a painful and irritating rash
  • etc, etc.

People have described many more horrible radiation side effects for which i’m trying to mentally prepare. I’m sure that my expectations are mild compared to to the reality of all of these effects simultaneously attacking me.

I am understanding that there may be long term or even permanent side effects. I’m concerned about some of the long term side effects like fibrosis and inability to swallow and requiring a permanent feeding tube. I’ve read posts from people who have experienced these effects and hope I can escape them. My new normal after cancer will likely be different from my old normal. I’m optimistic and find encouragement in the success of so many others who have gone through this and shared their experiences through blogs and discussion board posts. I’ve listed some in the Resources link at the top of the page.

Until next time,

Dave

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