52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer

Hey Remington,

Yes, the redness is fading. I'm 12 days out from the last radiation treatment and had my first follow up this past Monday. I was told it will continue to get better. My swallowing is pretty good. I have to cut everything small and can only chew on the non affected side without pain but I get the job done. I'll give the lemonade a try. I am able to slightly taste lemon merengue pie, just the first few bites have a mild lemon flavor then it fades. My plan is just to keep eating everything that does not taste bad. I had eggs benedict at a diner this morning and I could taste the hollandaise sauce. The taste was not as "intense" as I remember but I'll take what I can get. Bread tastes like paper so usually soak it, for example I am eating baked beans on toast a lot. I got advice to suck on zinc lozenges starting next week which has helped some folks regain taste sooner. Dry mouth is still bad but I have water with me at all time to sip.

Today I felt fairly normal for the first time in a while. I went for a long walk, spent 25 min at the gym just going through the motions lifting very light weights, and am preparing to go back to work Monday. I'm totally weaned off all opioids and just taking Lyrica for nerve pain in my neck and jaw. I'm still not at 100% energy level (maybe 50-60%) but like everyone has been saying it gets a little better each day. I have an appointment scheduled for a nerve doc to help with my shoulder that was messed up from the neck dissection, and another to see a PT person for lymphedema therapy for my neck. Also a hearing test to check if I lost anything since before the chemo. I did experience some ringing in my ears and sensitivity to loud noises but that is starting to go away now too. One day at a time until my July PET scan!

Smitty

A birthday, some milestones, and returning to "normal"

Today marks my 53 year on the earth, just shy of 6 months since I was diagnosed, and a little over a month since my treatment ended. I had several one month post-treatment follow up appointments scheduled for today but the President decided to attend his granddaughter's college graduation across the street from the hospital I needed to go to, so I rescheduled to avoid the traffic nightmare. So far my taste buds are still slowly waking up , I can eat most anything with small bites and a lot of liquid to wash it down, and I'm off almost all medications. In fact I gained back 20 of the 30lbs I lost and have to be careful not to regain the extra spare-tire of fat I had before. I've returned to exercising in the gym, I'm back to work, and started graduate school again today. My Wife thinks I'm going back into my normal activities too fast but I think I am doing just fine, and listen to my body when it tells me to slow down. I'll be in the woods this weekend hunting turkey and I'm shopping for a new bicycle to ramp up my fitness. If this monster decides to return I want to be in tip-top shape to fight it.

Swallowing is not 100% but I'll take what I have and continue to perform the swallowing exercises I was shown during treatment. Dry mouth is a constant and a water bottle is always at my side. My neck has mostly healed but is still tight and sore. I developed two superficial blood clots in my left forearm veins due to damage done by the chemo infusion but they are not the dangerous kind and I was told they will resolve on their own. I just need to take it easy at the gym. I'm grateful to be in good shape and good spirits and just living life again. So far so good. Next PET scan is in July and I'm not going to obsess about it and just enjoy one day at a time!

Thank you Russ. I’m so grateful to be on the mend. You were a big help to me on this journey.

Lymphedema therapy is helping

A little update just shy of 3 months after treatment ended. I had my 3rd of 8 scheduled lymphedema therapy sessions today and its really helping the swelling in my neck. It’s a 60 min massage specialized with techniques to drain the excess lymph fluid. Today they added Kinesiotape to my neck to gently help with lymph drainage. I also have exercises to do daily at home. My morning routine is getting longer -physical therapy exercises for my shoulder, speech and swallowing exercises, and now lymphedema exercises. I’m thankful for all the care providers that give me these tools to help me recover!. Next stage in this journey is first post treatment PET scan on 7/19.

Post-treatment follow up good to go and PET scan all clear

I had a few appointments with my care team and they all went well. Last week my chemo oncologist told me I'm no longer her patient. The chemo did not damage my kidneys, hearing is still ok, and all my blood tests are good and/or trending up to normal. I still have a little bit of "chemo brain" fog but much better than 3 months ago. Next the speech therapist told me to restart daily swallowing exercises which I stopped because radiation is the gift that keeps on giving, and my function could get worse as time goes by. Today my surgeon gave me the all-clear on my PET scan with no evidence of recurrence or spread. Next follow ups are with my radiologist and dentist in October.

My lingering side effects are moderate neck lymphedema, slight dry mouth (getting better slowly), some taste changes, and still having trouble swallowing bread without dipping it in something. I did discover potato rolls are easier to handle so that what I'm using for hamburgers and hotdogs loaded with condiments to make them softer. My left shoulder function is improving and other than doing pullups and shoulder presses I resumed most of my activities and exercises.

I'm very grateful and blessed to be in this position 14 weeks after my last radiation treatment.