July 1, 2011 - Compromises and Tradeoffs

July 1, 2011 – Compromises; Tradeoffs

The throat pain just became too much to bear so I gave in and started to take more pain meds. More pain meds means less pain but also less energy, poorer digestion, and general malaise. Pain pills are not perfect and to take enough to get rid of all pain means you’re a zombie. Compromises and tradeoffs.

Besides that the week wasn’t too bad. I played golf a couple more times and Joanne and I might tomorrow again if I can stay awake. I also did some yard work but nothing too strenuous and heavy. With the weight loss I just have little strength to do much besides some edging and raking. At least I’m doing something. I thought of going to the gym but without enough calories how can I expect to rebuild muscle? So I do what I can do.

Debbie, my main medical contact, had me look at my throat today with a mirror and flashlight. It is NOT a pretty sight. I don’t know why I didn’t look before but my throat is swollen, red and white, and just raw looking; no wonder it hurts so much. I’m told it’s healing. Ok, if you say so.

I’ve been eating at least one can of sludge per day through my throat and that’s after 3 pain pills and some lidocaine to numb my throat a little bit. It’s not a pleasant experience. I’m told I need to do this to keep my swallowing reflex from atrophying. I guess so but I’m able to swallow water so I’ll have to take their word for it. My thoughts are that it would be better to just do minimal swallowing (water) until my throat (which is allegedly healing) heals enough to it wouldn’t hurt so much. I hope Doctors know best.

As I wrap this up it’s obvious that my “healing” throat is dominating my life right now and it’s coming along on schedule (which means very slowly). Today is the 5^th full week after radiation treatment was completed. Feels like months. I was told it will be 3 to 6 months after treatment before I’m relatively ok. That’s a long time. I have a long way to go.

June 27, 2011 – Plodding Along Waiting To Get Better

June 27, 2011 – Plodding Along Waiting To Get Better

When oh when will my throat start to feel better? So much of my health is in good shape right now:  I have consumed 6 cans of Sludge (Boost/IsoSource) for 4 straight days now (easily too). This at least prevents me from losing any more weight (lost about 16 to 18 pounds I think up to now) but I’m freakin’ HUNGRY!! Everything smells good to me and I want food – but I can’t eat. It hurts like hell to eat anything and this really hasn’t improved in the past few weeks. I just take my pain meds by mouth (and apparently not enough of them). That, and water. That hurts too. I gave up eating anything else as it’s just too painful. Yet, when I’m not taking pills, drinking water, talking or using my throat the pain is minimal. It just shoots up when I swallow. Frustrating.

I’m finally producing less mucous which means I’m not awakened every 20 minutes choking on it. So I sleep better too; fewer naps (but I still take some). My energy level is adequate considering my damaged and weakened condition. I still have trouble concentrating on things like reading long stories or playing my guitar for long periods. I grow restless for the next thing to do – and there isn’t anything else to do.

As I said, other aspects of my life are coming around. I played 9 holes of golf for 4 days in a row. I suck at it but at least I’m out there enjoying myself. Tomorrow I’m back playing in my Tuesday night golf league and will leave right after to, yep, go home and consume more sludge and pain meds. I feel so close to being normal yet so far.
That’s the update. Tomorrow I see RadDoc again for another follow up. I’ll tell him my tale of woe and I’ll be told “it takes time” etc. Yeah, yeah, I know but I’m sooooo done with this already. But I do see progress in most areas so I’ll just keep on keeping on.

June 24, 2011 - Two Out of Three Ain't Bad

June 24, 2011 – A Plateau; Also Some Significant Progress. Fore!!!!!!

Yep, you read that right. I played 9 holes of golf with my wife and 2 other neighbors this afternoon (all women; why would men want me around at this pathetic level). I didn’t play badly either considering I felt as weak as a kitten out there. My energy wasn’t the problem, my loss of weight and muscle mass was. Soooo weeeeaaaaakk.  You need torso and leg strength to play golf and my legs have been deteriorating for years (prior muscle wasting problem) so this was just more of that. It was tough. And I am NOT ready to play 18 holes that’s for sure. It was great to get out there though.

My plateau? I haven’t eaten anything by mouth since my mashed potato adventure on Tuesday. My Wednesday pain was significant to the point I didn’t even want to take my pain meds by mouth. I still did all but one time. So I’d say no progress and even some regression since Tuesday on eating normally (I grimace just thinking about it). Debbie at RadDoc tells me I might be becoming “used to “ the pain meds. The answer to that? More pain meds. Screw that. I’m sick of this crap.  Two 5MG tablets of Oxycodone every 4 hours…..then I wait for more healing.

More progess? As of this hour (nearly 7 PM) I’ve consumed (by tube) 5 full cans of Boost which is a first this early in the day. I’ve only had a handful of other days (2 or 3) when I accomplished that. I expect to do a good job on can number 6 in a couple hours and that will be a FIRST for me since I started down this miserable road.  My stomach seems very receptive to more quantity for some reason. So to quote Meatloaf:  “Two out of three ain’t bad!!”

All in all it was a good day.

June 22, 2011 – Eating,….. Well, Hurts Like Hell!!

June 22, 2011 – Eating,….. Well, Hurts Like Hell!!

All good news for the most part but trying to eat in this condition is not for the faint hearted. Pain in my throat is now likely to be my biggest problem over the next few months. And, yes, it will take that long. More on that later.

Yesterday was a good day. I “ate” easily through my tube and took all my pain meds by mouth. I also went to the practice range and hit some golf balls for the first time. Then I chipped and putted a little bit. This weekend I’m going to try to play 9 holes with Joanne and if that works out, I’m going to try to rejoin my Tuesday night league starting as early as next week. I may be overly ambitious here. I have to see if I can survive 2 hours out there. This may or may not be a good idea but I need to start living at some point. I guess pain and fatigue will be my friend for a while.

Last night I decided I really wanted to eat some mashed potatoes. I’m REALLY hungry. Like other food before, I knew it would hurt but I’m so friggin’ hungry I just had to try. So Joanne whipped up some potatoes with plenty of butter (too much as it will turn out) and no salt or pepper and away I went:  In the mouth, move it around a little, swallow/grimace. Wash down with water, grimace. More potato, move it around a little swallow/grimace!! Repeat.  GRIMACE!! During all this I pace the floor, feel myself getting warmer, my heart races faster, a little perspiration – all signs of a man in pain. Joanne watched this go on and kept asking me if I was ok since I looked horrible doing this. Why we grimace when things hurt is beyond me but my facial expression must have been scary.

Well……..I am glad I ate those damned potatoes but I needed to back off on the butter. My stomach isn’t used to high fat food and about 2 hours into the evening I felt awful. No nausea but a sense of being “over full” and bloated. Blah. Also, last night my throat was back to producing prodigious amounts of crud and it hurt like hell too so I didn’t sleep well. I think I overdid it.  But I do NEED real food and this is the only way. Each day I’ll try to eat something just to do it. That is except for today. I need to back off and let my throat rest today. I have to remember that this is going to take time. I hate that fact but there is nothing I can do but let nature heal me in due time.

June 19, 2011 - Things Continue to Improve

June 19, 2011 – Things Continue to Improve

Last weekend I was ready to cash in my chips, kiss this world good-by, look for an easy exit and generally wanted out of my misery. I hope (HOPE!!!) that was the low point in my recovery. Meanwhile……….

I woke up at 6 AM this morning on schedule to take my pain meds and took them – by mouth. I didn’t really fall back to sleep because I had a better night’s sleep than in recent times (less mucous, less pain, less misery). I got out of bed after 7 and drank, yes drank a bottle of Boost. I then washed that down with swallowed water and followed that with some Coke down my tube (Coke is still a bit harsh for my throat). I read the paper for a while and then around 9 AM I went outside and mowed the lawn. I came in and showered, again took my pain pills by mouth and consumed (by tube) a can of IsoShure before heading out to Costco. I was home by 11:30 and it already felt like I had a better complete day than in months. And it was only 11:30.

The day has gone pretty well since. My throat suffered a bit from the abuse so when I tried to eat some yogurt it hurt a bit more than I liked so I didn’t do much of that. I’ll be nice to my throat the rest of the day but am happy with the progress I’m making. My burned out throat is my last battle. Once that heals I’m on my way. It will still be months.

I’ve quit losing weight as I’ve been able to handle 4 to 5 cans of “food” per day now. I’m still very weak but not as tired (no naps after my lawn work and shopping) so life feels better all the way around. The dreaded nausea seems to have left and my massive mucous production is way down (as is my tissue consumption). I think I’m ready to head to the practice green and do some chipping and putting (95 degree days are a disincentive however).

I hope this continues.

June 16, 2011 - The Best Day in Months

June 16, 2011 – The Best Day in Months

What a difference a couple days make. Today my new regimen of Oxycodone and anti-nausea meds seem to have stabilized me to a point where I was pretty functional. Maybe I found the right combination of drugs.
This morning I worked in the yard with my weed whacker (string trimmer) edging all my flower beds. For the day I also took in a solid 4+ cans of sludge plus Gator Ade and good old Coca Cola. I didn’t lose weight today.

I visited RadDoc this afternoon and much to my surprise he reported I’ve lost only 1.5 pounds in the past two weeks . Then I returned home continued my drug habit and then went out and raked up some pine needles. I came inside and drank (yes, drank) half a can of Boost before finishing it in the tube. That was a first in months.

Tonight I went to my monthly poker event, made a cameo appearance (45 minutes), and that was my first social encounter in two months. I even won $9. Then I came home and played half hour of guitar. My fingers were sore and my singing was weak but at least I had the motivation to do it. Damn good day.

Emotions:  I feel relatively good and hopeful again. I said this would be an honest blog so I don’t apologize for my previous two postings. I was miserable and very well may have other lousy days coming up and readers will likely hear about those too. I heard from a couple oral cancer survivors who recognized my frustration and assured me “this too shall pass.” I suppose I’ll still have my demoralizing days. I guess it goes with the territory where I am concerned. The reality of knowing I have many months of recovery to go will sink in quite frequently I imagine. But I continue to march forward.

June 14, 2011 - Catch 22

June 14, 2011 – Catch 22

First of all I want to thank my blog readers for rallying to my cause after my last depressing posting. Many of you sent your support my way despite my very negative analysis of the situation. This one might not be much better but I’m going to keep it honest no matter what happens.

Many of us older folks remember the book and movie Catch 22 (from the 1960’s). I think the premise was about pilots trying to avoid combat missions by claiming they were crazy but if they had enough sense to try to avoid flying combat missions than that proved they weren’t crazy. A classic “can’t win” situation.

Here is my Catch 22:  I need to eat to keep from losing weight but I also need to take pain pills because of my burned up throat. The pain pills nauseate me and wreck my digestion and keep me from eating much but if I quit taking them I’ll have severe pain that will prevent me from doing much of anything including eating. So what will happen first, will my pain subside in time for me to reduce narcotics and eat or will I starve to death. I don’t know. I’ve calculated I’ve lost about 20 pounds now and on my way to 30 or so. At some point my wife will outweigh me; six to eight weeks at current loss rates. In 3 or 4 months I’ll be on the back of a men’s magazine as the 98 pound weakling. I wonder if I’ll live long enough to weigh 98 pounds (I was about 143). We’ll see.

I’m off the pain patches (Fentanyl: gave me mucho nausea, vomiting and now a rash on my lower legs) and I'm back to only Oxycodone. ChemoDoc has me on a more rigid 3 times per day anti-nausea medication (Zofran), with a  4-times-per-day gastric “speed up” med (Reglan?) and 6 times per day of pain meds (1.5 to 2 Oxys every 4 hours). Other stuff on occasion too.

Emotions:  Disappointment, disillusionment, disgust, frustration, anger, sadness, fear (not of dying but of the slow miserable process of doing so), boredom…..that’s all I can think of. Even if I rally and this works out I wonder if I’ll ever feel the same again. I feel traumatized by this experience; sort of a PTSD kind of thing where I’ll have trouble enjoying life again due to this experience. I may never be the confident, somewhat arrogant, highly opinionated guy that reached age 62 in spite of his faults. Music and golf? I don’t know. Travel? What if I can’t eat normally (a likely outcome)? I just don’t know.