Recovery can be a long frustrating road. Its full of ups and downs with a good setback thrown in every once in a while just when you think things are finally ok. Thats all the normal part of getting well. It will take a long time and yes, there will be many tears thru this whole battle. Recovery for many can take every bit of 2 years. Most of us were doing significantly better at 6 months post rads and even better at the one year mark.

Sounds like your eating is coming along. Thats excellent! Its very difficult to relearn how to eat properly again. You have done great with only losing 13 pounds in all. Be very careful with your nutrition and hydration. For at least the first full year after rads you will need to still take in at least 2500 calories and 48 oz of water every day. Your body has been thru alot and needs the extra fuel to rebuild itself. If you can get 3000 calories in thats even better. The better you do with nutrition and hydration, the better you will feel.

Hang in there, things really will improve. Before you know it you will be almost back to normal.




PS... Its ok to cry, everyone does at some time during this journey.

Week 5 thankfully is coming to a close. I had several follow up appointments this week starting on Monday with Labs, Speech, Dietician and Dr. Maura Gillison's nursing staff. Labs came back normal noting that electrolytes were normal and liver kidney functions normal. Speech and Diet released me and said my progress dictated the release. Nursing looked at burn area that hit me last week and took pictures calling me later that day to explain this was radiation recall. Rare but happens. Body for whatever reason thinks it is getting burned or delays reacting like it would during treatment. They made an appointment with Dermatology. That was the next appointment Wednesday and the radiation recall was confirmed. They wanted to do a biopsy to confirm but I had no peace about getting cut again. They prescribed corticosteroid creme and today the area is showing improvement and not as painful. Thursday was laser treatment for ulcer on tongue. This was number 4 and the Doctor was very happy with the progress. This is still the one area that has prevented me from eating full meals. He believes this treatment should take care of it and scheduled a 2 week follow up. He was honest and said he did not think we would be where we are today because of the severity and size of the ulcer. I am so thankful for him and procedure because I would still be suffering horribly without it. By Monday the pain should subside and I will see progress through the week.

Final appointment was a follow up with my original cancer surgeon who did the biopsy confirming HPV +. He was pleased with the progress, checked my throat and tongue and confirmed the tumor is gone. I will now see Dr. Old every 2 months and he will be my primary care MD at the James Cancer Center at OSU. So I have been eating small portions all week and picking at my wife's food. PEG is still the source of the majority of my nutrition. Weight is stable, energy abundant and attitude 180 degrees from the last update. We are pressing on.

Tuesday 09/03 will mark 7 weeks completed in post treatment recovery phase. I am working my way through the persistent tongue ulcer issues. After 5 treatments we are down to 1/4 the original size but the 1/4 brings incredible pain and discomfort at times. It restricts my ability to eat full meals and sometimes I can't eat anything. I have tried magic mouthwash on the ulcer, chewing on one side etc. but still prevented from feeling "normal" with eating. The laser treatments will continue and victory will come at some point in time.

Still battling with fatigue from time to time yet able to put in 6 to 8 hours a day working from home. Tuesday 09/03 I will begin transition to working in the office.

Radiation recall is under control and no longer a major issue. Area is pink but requires moisturizers 2 X per day.

Pain meds are down to 2 10mg oxycodone every 8 hours. This is down from 2 every 3 hours. Next step this week is to drop to 2 every 12.

Still unable to add weight. I have been able to maintain. Total loss is still at 17# from average.

Yes, "victory will come at some point in time" until then, praying that you hang in there. From reading your posts...I'm sure you will!
Best of luck on Tuesday when you return to the office.

Good luck and congratulations on returning to the office. Nothing like some familiarity in life! You are doing amazingly well. Keep up the good work.

Thank you for the encouragement. Somedays I feel like I should be further along. I have to remember make haste slowly.

It's not about how fast...it's about how much enjoyment you can squeeze in!

So week 10 is now behind me. Measuring progress and setbacks have become taxing because I am not where I thought I would be by now. I am thankful for the progress don't get me wrong. Since my last update
I have eliminated pain meds completely

Had difficulty sleeping at times

Lost 10 pounds while maintaining 2500 to 3000 calories

Gained 5 back thanks to Christine's magic shake and 4000 calories

Worked in the office for 2 full weeks including leading a few all day meetings last week

I am eating throughout the day albeit small portions. Use PEG 1 to 2 times a day just for extras

I made visits last week and this week to all of the medical team. All were pleased with progress,

Had another laser treatment to tongue and think it is 85% healed. Still sore and not able to eat on that side. Next and hopefully final treatment Wednesday.

Radiation recall on neck is gone but it does heat up sometimes

Fatigue is no longer an issue

Dry mouth is. Rinsing with Caphosol and taking a med to stimulate saliva.

PET is Tuesday and there is no anxiety- the result is sure in my mind and heart.

PEG should come out Friday when I meet with Dr. to discuss results.

My wife reminded me that Dr. Old told me 12 to 16 weeks for recovery to feel a sense of normal and up to a year to find new normal. I should have paid more attention to that and not strived to heal faster than the norm. This will be a life long journey I'm sure.

James, your recovery sounds like you are doing very well. I know the timing can never happen quickly enough for most patients. But you really are doing great!

Im glad you tried the chocolate peanut butter milk shakes and were able to gain back a few pounds. They arent the healthiest with alot of fat in there with the whole milk and ice cream, but they are high in protein and gets you some nutrients with the carnation instant breakfast. I really liked them, they felt soothing on my sore throat.

Congrats on the upcoming PEG removal. That is one big accomplishment! So is returning to work.

After everything your body has been thru, it can take 2 years to make a complete recovery. Thats not to say for the whole 2 years you will feel lousy. Just that you could see improvements in your sense of taste here and there up to about the 2 year post rads mark. Also, Ive been told by doctors it takes one month of recovery for every week of radiation. Give yourself some credit, you are making fantastic progress!!!!

Overall it sounds good James. There will be bumps in the road to recovery, sometimes setbacks, so don't get discouraged, and I was nowhere near where you're at this same time, but I still don't compare myself to others nor should others with me. I just happen to be a slow runner, and will get there also like yourself.