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.

June 12, 2011 - 9:30 AM - This Just Sucks

June 12, 2011 - 9:30 AM - This Just Sucks

I said this will be an honest blog and this should prove it.

I woke up this morning about 5:15 and my first thought was: "Damn, I woke up." This was after a particularly horrible day on Saturday following a wonderful day on Friday. I’m just angry and disgusted with this entire process and told my wife I’m sorry I went down this road. I’m sick of it. I’m now over 2 weeks past my last treatment and I’m supposed to start feeling better. I’m not. However, I will say that I've noticed a pattern that I'll get to later.

On Friday I ate 5 cans of food all of which went down easily and I was hungry much of the time. I was feeling like things were looking up - again. Good day – again. I awoke Saturday morning about 3:30 AM and went to eat some more but after a couple ounces of sludge, I noticed I wasn't feeling as chipper so I stopped. Later that morning I managed to finish that can but felt worse with each passing hour (nausea again). By about 2 PM I tried to take in a bit of Coke and immediately threw up. A couple hours later I tried food again but barely managed half a can. The day continued with increasing amounts of nausea. I didn’t bother with any more food. In the evening I started watching a show with Joanne and took an anti-nausea pill and tried to take in more Coke. I sat there, started sweating and feeling even worse and finally headed to the bathroom where I purged from all directions. That was particularly pleasant.

Off to bed I went and in some ways slept better than I have in weeks. I woke up (unfortunately) still feeling lousy and have managed to pump in some Gator Ade, water and Coke with no ill effects. However, I’m so disgusted, angry and defeated that I was sorry I woke up this morning. That’s just the way I feel.

Now about the pattern I discovered:  I’m on Fentanyl patches for pain. I change them every 72 hours. On the day I make the change I’m usually feeling ok but still have some pain. About 12 hours later I notice less pain in my throat but more nausea or at least more stomach discomfort. That seems to peak at about 24 to 48 hours into the 72 hour period. I’m able to take in little food during this time and usually vomit at least once. Then I start to feel better again but the pain in my throat pain  causes me to take “breakthrough” Oxycodone. But I am usually ok with food during this time until the pattern returns with the next change. So I have the “2 steps forward, one step backwards” thing going but the one step back seems to be as large as the 2 steps forward.

I may write later if I’m feeling better (which I believe I will) but at this point I don’t give a damn how this ends. I’m sick of it. Life is NOT supposed to be like this. I know, I know, this too shall pass but it sure doesn’t feel like it ever will. Can you tell I'm pissed off?

June 10, 2011 - Ok I Feel a Little Better Today

June 10, 2011 – Ok, I Feel a Little Better Today.

Yeah, I was pretty down a couple days ago and while I’m not exactly jumping for joy kicking my heels together, I’ve pulled myself together enough to be more rational. I had many responses of sympathy and concern about my “down in the dumps” mood and it does help to hear from people. I really appreciate the support. I’m settling in to the reality that I won’t be eating normally for months and will have a very slow and boring recovery through summer and into the fall. My feeding tube will come out sometime after the leaf viewing season in New England is complete. Yippee.

My biggest issues today are mucous production (24/7 issue), throat and mouth pain, and a nagging low grade fever (99.4 – 100) that hangs around much of the time (the doctors don’t know why). The fever drains me but the mucous miseries keep me from doing much away from home; I need to be near tissues or a sink. I went to Wal-Mart carrying tissue and after a short time I have to slither off to the side to BBrrrrhhhaaaaacccckkkkkk into a tissue – then stuff the mess into a baggie I carry in the other pocket. So I can’t go to movies or anything that requires quiet time that’s for sure. So I’m miserable AND bored.

Speaking of mucous, remember during the movie Titanic when Jack was trying to teach Rose how to spit? Well Jack, I can “hock a loogie” like nothing you’ve ever seen before. It’s gross and I haven’t said much since my one posting but I never sleep more than an hour at a time without waking up to clear the debris from my throat. It’s like sleep apnea. I keep tissues at my side and a waste basket next to me on the floor. I usually fill it up (stock tip:  the maker of Kleenex). I also have weird dreams but that could be fever/pain/pain pill/ or lack-of-sleep induced weirdness.

The good news is I’ve had no nausea and therefore no nausea meds for 2 days. That’s a victory of sorts. As a result I’m back up to 4 or 5 cans of sludge which does help to maintain my weight. If I could ever get to 6 I think I might gain a few pounds back. We’ll see.

Oh joy…another weekend coming up. I’ll, um….get up…..um….stuff Coke down my tube…..um….shower……..stuff some sludge down my tube……..actually swallow some water just to make sure it still works (ouch!) and then….um……read the paper and then um……..well…..you get the idea.

June 8, 2011 - Week Nine is No Picnic

June 8,  2011 – Week Nine Is No Picnic

Another up and down week for me as each day seems to counter the previous one. I ate more yesterday than any time since I’ve had the feeding tube so that was positive. Last evening I visited my golf league group while they enjoyed their mid-season food-fest.  It was good to visit with everyone again and made me appreciate all the support I have here from my many, many friends. I was happy to see life at the golf course is moving along as usual. I can’t wait to get back to it – but I know it will be months.

Then there was today. I woke up this morning not feeling so well, put a bit of Coca Cola down my tube and proceeded to bring it right back up. Wonderful. I’ve also had a low grade fever (around a 100 or less) each afternoon and evening for the past several days. ChemoDoc sent me to get a chest X-Ray and urinalysis. Both negative so it’s a mystery. I’ve only managed to consume one can of “food” today negating all I managed to do yesterday. I wonder what tomorrow will bring.

Emotions:  Not so good. My RadDoc Nurse Practitioner (Debbie) called me this afternoon and I just about fell apart on the phone expressing my frustration. She’s been my main contact person throughout all this and encouraged me to understand this is all normal. It’s tough. Then my wife came home and I told her about the conversation and she feels terrible for me too. Joanne continues to be a rock of support throughout this ordeal so when I feel bad she feels bad. Then I feel bad about that.  I’ll soldier on but nobody should ask me if this is worth it at this point. I’m having a tough time right now.

June 5, 2011 - Two Steps Forward, One Step Back

June 5, 2011 – Two Steps Forward, One Step Back

That’s the way this weekend has gone. Saturday was the best day I’ve had in quite a while. I even went out for a brief retail visit with my wife. I ate some food the normal way although it was about 5 swallows of some soup. I took in more cans of sludge than any day since I had the feeding tube installed. Then this morning I got out of bed, felt ok, fed myself about half a can of Ensure Plus  - and barfed. GRRRRRRR!!!

That took care of much of my day as I took an anti-nausea med and slept for a few hours. This afternoon I’ve come around again taking in some pudding by mouth and adding more cans of “nutrition” throughout the day. I was, again, able to drink some Coke through my mouth as well. It’s now early evening and I just finished another half can of “food”; I’ll see how it goes.

In all, I’m getting better but the pace of improvement is frustrating – but certainly not unexpected.  As an aside, the pudding didn’t taste particularly sweet so I asked my wife to taste it. It’s very sweet she tells me. So we tried an experiment:  I took a small amount of honey just to see what it tasted like. It tasted like someone had salted the honey if you can imagine what that would taste like. So my taste buds are a mess. I can only hope that will improve in time. We’ll see.

The week ahead is totally dedicated to keeping weight on and continuing my efforts at normal swallowing. No doctor visits, just a week of trying to get better. This is the second week after the treatment was completed and after this week I’m supposed to start seeing more improvement. We will see. Is it October yet?

June 3, 2011 - "I Don't See Any Cancer."

June 3, 2011 – “I Don’t See Any Cancer.”

I have to say I would love hearing that said to me for the next couple decades. “I don’t see any cancer” is what my RadDoc said to me after scoping my nose and throat on Thursday. Of course that only means there is nothing obvious there. I’ll take that as a win.

I want real food. I say I want real food only during those times when nausea isn’t the dominant feature of my existence. And that isn’t that often. The “Coke cure” continued to work for most of the week but I still wasn’t able to eat enough to keep from losing weight. The last day or so has been a little better. No visits to the “gastric return lane” but I’ve had moments when I wasn’t sure if that would continue.

I saw both docs this week and will see neither one of them next week as I just have to continue with recovery.  I just take each day hoping I feel better than the previous day. I was already told I won’t see much improvement for the 2 weeks after treatment and I’m now 10 days from my last chemo and 7 from my last radiation. More to go.

This morning my wife and I decided to experiment with oatmeal and the feeding tube. I was thinking if it was liquidy enough it would work. It didn’t. I was able to clean my tube and it was back to IsoSource. I also started taking in Boost and Ensure as well as I have plenty of those left too. I just need to “tube” five cans of this sludge per day but even more would be better. I’ve only done five cans three times. I believe I’ve now lost about fifteen pounds. I’m going to do more research on PEG tubes and normal food as I know some people live their entire lives with this thing sticking out of their gut. I’m also swallowing a bit more. I ate some of the oatmeal and then drank (actually drank) my Coke the normal way.  Several swallows of each and I was done. Then it was off to floss and brush. My teeth can decay quickly because of the lack of saliva so flossing, brushing, and fluoride treatments are a regular necessity.

Going forward it’s imperative that nausea dissipates to a point where I can stuff more food into my body. Also, throat pain should start decreasing allowing me to start to reduce pain meds. Then everything should work better.  Not yet though. Still heavily drugged.  It’s still a work in progress.