hyper taste?, etc.

Hi all,

Just wraqpping up three weeks post from a very non-typical cancer survivor. From all I read and planned was that 3 weeks out I was expecting the effects of rads just starting to back off. All the other reported side effects such as mucous, soreness, pain, etc. would also be sprinkled around.

I have no idea why I am experiencing such unusually light side effects, I do believe in my heart all the docs, from the surgeron ENT, the MO , and RO, dossimetrist and medical physicists, did not get gun shy and back off the trigger.

Hopefully, knowing some do escape quite unscathed is good, something to hope for, not just some made up potential for an easier ride, is helpful. I surely do not intend in any way to make the suffering feel worse but rather that there are folks who do well.

This entire third week post tx has been very stabilizing and I'd say I am 90% fully recovered. The only side effects I have from cancer treatements is having lost weight,  very slight dried burnt skin on neck, and slight soreness in throat, mostly upon awakening. A little soda/salt gargle and a swish of Magic Mouthwash takes the sting off and on I go.

I do sleep a lot but it is not fatigue or even pure exhaustion. I do get very tired and will sleep 20 hour at a stretch but feel really recharged when getting up. Not like fatigue where you never feel rested, or exhaustion where you are so dead to the bone when going down. It is like a normal wake/sleep cycle except it is not 8 hours of rest but 16 or more.

The only other side effect is taste. Nearly everyone reports LACK of taste. The past week my taste has come back like a bullet train. Hyper sensitive and supercharged with flavors of all kinds. It is so strange since I have no recollection of anyone posting this sort of reaction. All taste is 100% and sodium is the sole thing that creates discomfort while I eat. Like tonight, I had a couple plates of fresh steamed jasmine rice, steamed zucini and moist meatfloaf with very minimal seasonings. It was absolutely delightful to eat. I could taste every subtle taste in all the food. Nothing off tasting or under flavored. Just very pure and clear - each flavor having its unique characteristics. Not complaining but what is this all about? All new to me.

A few weeks ago there was the PEG bruhaha and again, not having any intent to make any patient feel bad, stated I was not doing no PEG. Just as treatment ended, a deep sense of momentum, thrust, and mass built up and gave me some very strange asnd odd power. Rather than the next three weeks of the effects of radiation continiung to ravage my body, things stabilized and did not get worse the past several weeks. The main side effect was the horrible ulcers and sore and burning on my tongue. But even that did not get worse, it moved around and then little by little started shrinking. I would say about day 18-22 the sores really closed up, still leaving some pain but surely not what I expected or planned for.

Just continuing to be the one who like to stir things up. I thought I would add a few of my insights to what I think helped some of my rapid recovery. Remember everything I share is my own personal experience and zero based on science or fact, purely anecdotal.

1) Mucositis and thrush. My take on this early on was to be very aggressive in watching each new ulcer and sore. I burned out one LED flashlight then bought a small tactical unit to really light up inside my mouth and the back and down the throat. Many times everyday, surely at least half a dozen times, I would gargle with soda/salt to clear the light mucious and spit in the mouth area. Then the flashlight for a very detailed look at each and every sore, ulcer, patch and coating of ick. Early on I did two things. First, I would apply dry salt directly on the open sores. OUCHIE, OUCHIE, OUCHIE. Then I started to rinse with pure hydrogen peroxide and rinse and rinse until all the foaming was gone, a sign all bacteria was dead for the time being.

Thrush to me meant that something got pretty infected and imflamed and I may have come close a couple times with the onset of thursh and used Nystatin to stop it. Also, extra scrubbing of the sores and ulcers using a waterpik with that spoon scraper attachement worked wonders for spraying water right where i wanted it to go. I would mix salt/soda mix into the waterpik and use that to blast away at the wounded tissue. yes, OUCHIE.

I do believe being so watchful and proactive kept this as much to a minimum as possible. No stopping the onslaught of the ulcers and sores as they are the direct product of chemo and radiation. But by really really staying on top of it all, it could not spread or create more issues. That is my opinion.

Hydration for me was a weak point. I knew early on that staying hydrated was an issue so I requested extra saline IV infusions every week alongside the regular weekly chemo treatments ( I had a three week cycle and weekly chemo cycle througout). I would get full infusion on Monday and extra saline on Friday. Ireally believe that the extra saline helped me stay minimally hydrated.

Nutrition - What I did a bit different here was to load up on protein. Protein shakes all the time and then instead of water which caused burning I always had liquid Muscle Milk ready to injest. It was far more soothing as well as a constant source of protein. After all my reasearch I totally banned the notion of the ensure type supplements. When I read the ingredients I saw they are basically sugar syrup sprinkled with vitamins and some minerals.

The body tissues needs protein to rebuild no simple carbs. Calories are the same; 4 calories per gram of carb or protein. So to me there was no use for simple carbs and pure whey protein and BCAA were what I pretty much consumed for a few months. Actually, my weight is having some trouble stablilizing so I need to start protein drinks to generate the few more calories each day to get into the net gain column.

I'm sure there are skeptics laughing at every theory I put forth but it all makes sense to me. I guess I could just off-handedly just say I was one of the lucky onews but  I think that all the questions I put to every medical professional helped get a bit more attention and critical thinking from each to review my case with a bit more interest due to my own passion and education I had gained. Often times, I got positive comments about the knowledge and interest  I was taking in all the details of my case.  I feel it made a difference.

I wish there was more I could offer to the many who continue through recovery other than state it does get better, a generality to which there are always exceptions. At this point, all I can do is plan for the upcoming scans and find techniques to stomp out as much scanxiety as possible. Thanks to all for all the support I have received. I wish I could do more to pay back what I have been given here.