September 29, 2011 – One, Two, Yank!.....Ouch….Feeding Tube Gone!!

I feel free! My feeding tube was removed yesterday despite some push back from my gastro-doc. And yes, he just yanks it out. He wanted me to consider replacing it with a button (just as it sounds) in case my swallowing test (next week) shows I might have future swallowing problems. Well, I already have problems and if it gets so bad I can’t even drink liquid nutrition anymore, then I’ll worry about that when the time comes. So it was a good morning and I’m no longer tethered to this “food crutch.” The (PEG) tube was necessary though. Anyone with oral cancer who gets through the treatment without a feeding tube is some kind of super hero.  Either that or they had about 60 or 70 pounds to lose. The pain and swallowing problems were just too great.

This morning I celebrated by eating an entire bowl of cereal and fruit the regular, normal person’s way. That is without using an immersion blender to turn it into mush. It took only a little longer to eat than it might have a year ago but eat it I did.

So I had the feeding tube for 4 ½ months and now I have a healing “bullet hole.” The stomach itself is supposed to heal in 24 hours so that’s about now. The external hole might take a few days (unless I’m unlucky – which does happen) and I need to wear a bandage over it.

Yesterday was doctor day with 3 appointments. My second one was with my dentist. I had my teeth cleaned and lucky for me all the discoloration I was noticing was just that. No decay, no cavities. I just have to brush after I eat anything which is a pain. I now have a travel toothbrush which I’ll carry everywhere.  I also use Biotene teeth products for everything (brushing, rinsing, dry mouth spray etc.). I guess that will be a lifetime change for me.

My third visit was unrelated to oral cancer. I visited my neurologist about my muscle wasting condition and I appear to have a bit of neuropathy now too. I won’t turn this blog into a discussion about that but down the road it will probably be my bigger problem if cancer doesn’t return.

All things considered, I’m doing much, much better than my summer experience. I take no more pain pills and other than some sleep issues I’m starting to live more normally. I’m playing guitar again and can only hope my voice will return to its previous pedestrian sound. I’m playing golf but that will never return to my glory days just because of overall weakness due to the muscle problems I mentioned. I’ll play as long as I can but the end of golf is definitely sooner rather than later.

I just re-read much of my blog; I’ve never done that before. I had a really rotten June, July, and August. I’m not sorry for anything I wrote as it reflected exactly what I was feeling and experiencing. I’m just not sure a future oral cancer patient should read it. Too scary.

September 21, 2011 – Starting To Eat Better and Better

Tonight my wife made meatloaf, sweet potatoes and green beans. It was a good dinner and I ate it all. Admittedly, the meatloaf had to be a little softer than usual and the beans were pureed. It’s all good nutritious food that keeps me healthy. I could taste much of it too. I’m lucky there. I’ve heard of worse problems regarding the sense of taste for some people.

I’m still not gaining weight but I’m getting all my calories through eating now and have plenty of variety to keep me healthy. I don’t enjoy eating yet though because I have to add water with each bite of food (especially the dryer stuff) and I’m still having swallowing problems. I still have some pain (much less now) and some difficulty in the swallowing process itself but I think I can keep myself alive without the feeding tube. Unfortunately my RadDoc wants me to have a swallowing test done first and that’s not for 2 weeks. The damned thing is starting to annoy me now and I’m ready to move on.

My energy level is better (fewer naps) and my attitude is better although I’m still not sure if all this pain and misery was worth it. I suppose I won’t really know until several years go by without problems – and a life that I can say has a high degree of quality. The jury is out.

Tomorrow is my birthday; I turn 63. We’re going to try going to a restaurant and see how that works out. I’ll be looking for pasta with some type of cream sauce. Then I have to find a bathroom and take care of my dental hygiene. This lack of saliva creates a need for constant vigilance regarding keeping teeth clean. This is a nasty disease with lots of side effects from the treatment. Dental problems are just one of them. I’ll be seeing the dentist every 3 months from now on. Just one more thing.

Well that’s it for this episode of “Cancer Place.” I hope I continue to improve and don’t run into any speed bumps along the way. I’d like to gain a little weight too.  Later.

September 16, 2011 - Still Improving And Starting to Play More Golf

My energy level has (in general) been better so I’m back hacking it up on the golf course again playing 18 holes now. My bigger issue out there is my muscle wasting problem and not my oral cancer or recovery. No golf skills left. No leg strength. In other news, I have much less pain on my tongue (down about 60 – 70%). I can chew gum now (aids salivation). My throat is also showing signs of coming around as well. I still eat mush and am still not exactly enjoying my meals yet but there is progress. After playing golf today I tried tuna salad. That wasn’t a good idea. I can’t swallow it very well. Solid food will be a long time coming I think.

Tuesday I see RadDoc and I’m definitely going to request the feeding tube be removed. I’m tired of it and I’m able to sustain myself with regular eating so it needs to go. I’ll feel freer without it I think and maybe it will improve my attitude – which I admit badly needs improving. I’ll say this, despite my fatalistic attitude, I’ve never stopped trying to recover and survive. I just haven’t done it with any class. I guess I’ve never been good at pretending I’m feeling positive when I’m not. I had a miserable summer – and I said so. I’m still not sure what kind of future I have but I’m still here so I’ll give it a shot.

I have to say my wife continues to take good care of me doing her best to create mushy meals of normal foods so I can get the right nutrition. That and putting up with a “jerk” of a husband qualifies her for sainthood. Regarding food, I still don’t eat enough but when you don’t enjoy the process of eating, it tends to limit the activity. A sore throat, difficulty swallowing, and food that all tastes blah doesn’t lend itself to binging.

Some of you may have seen NBC news Thursday evening where they talked about the increase in oral cancer from the HPV virus in young women. They are the fastest growing demographic for this disease. Not good news.

September 8, 2011 – Progress But Another Setback….Sigh…!

It’s always something isn’t it? I didn’t write for a week because there just wasn’t much to say. I’m still feeling ok because of eating a good balanced diet but each meal continues to be a chore combined with some torture. However, my throat seems to be about 20 to 30% better overall with evenings being the worst time for pain. Yet, there’s progress I guess.

Then, of course, I was brushing and flossing my teeth the other day and couldn’t help but notice some dark spots around a veneer and a crown that I don’t remember seeing before. Tooth decay is a problem for those that have limited saliva and even though I was flossing, brushing and giving myself fluoride treatments daily, it apparently wasn’t enough. So I’m seeing my dentist on Monday to assess the damage. I sure as hell don’t want to lose my teeth but I may need to brush etc. literally immediately after I consume anything. That’s rather limiting in itself. One more burden to bear.

My energy level has improved somewhat but I still have these “crash periods” where I just want to sleep. Today it happened about 10:30 AM and I slept until 1PM. Some days I don’t nap at all.  One day it was 5 PM. I still sleep well at night. I’m told the fatigue problem is a result of the cancer treatment and could last awhile. That’s one reason I enjoy staying at home. I don’t want to be somewhere committed for a couple hours only to want to fall asleep on the spot.

Yesterday morning I did play 18 holes of golf for the first time since April. I survived without incident (didn’t fall asleep or anything). I also drank a Boost half way through the round, and drank a Dr. Pepper (didn’t really hurt too much) and even ate some soup at the pro-shop restaurant when I was done with golf. It was my first outside food since April. It was a good day.

Finally, I listened to our old 3 minute audio sampler from the band I was in. For readers who may never have heard us here is my website with the audio sampler that will start automatically: http://bbagby.webs.com and I admit listening to it made me very sad. I really enjoyed playing in a band and because of throat damage from radiation I may never sing again. I can still play guitar but have yet to generate the same level of interest. It’s a real loss for me. I’m going to try to play anyway just to see if my interest comes back.

Overall life isn’t quite as bad now as it was. Better days to come?

September 1, 2011 – Happy New Month!! I’ve Had Flashes of Improvement.

Where did summer go? Mine was spent in a fog of pain, fatigue and depression. Now I’m having brief moments of improvement in both mood and energy. I’m not getting all excited about flashes of improvement since I usually return to my regularly scheduled misery before the day is over. Actually, I’m finding I feel the best right after my “slurry” breakfast of cereal, fruit and milk mid-morning (all mashed together with an immersion blender). After my evening meal I’m usually back to pain and misery. But at least part of the day I have less of that so that’s a good thing.

Acupuncture – eh….I don’t know. On Tuesday I gave in and gave acupuncture a try. It wasn’t an unpleasant experience. Indeed, the needles weren’t bad except for one or two that ached a little. But did I feel like this was something that was going to contribute to my recovery? Not really so I’m done with that. That and Reiki and other “treatments” from the alternative medicine universe require as much faith as organized religion and I’m just not like that. So I continue waiting for time to heal all wounds. That’s not working either of course but…..

I’m using my feeding tube minimally now and will discuss getting it removed today when I see RadDoc. The only thing I use it for now is IsoSource and Cola (and water). I think I’ll have to wait until my throat gets a lot better though because IsoSource ends up being my nutrition of choice when my throat is too sore to tolerate drinking anything including water. As it is now I’m getting 80 to 90% of my nutrition by mouth. I’m eating chicken as well as beef (ground up and heavily liquefied) in addition to potatoes and vegetables and pasta and fruits. I can chew pretty well. I actually tried a few crackers yesterday (with PLENTY of added water). I’m definitely receiving a balanced diet now which is giving me my “flashes of improvement” in energy and physical appearance as well as color. I look a little better now. I still can’t gain any weight even with extra ice cream and other stuff. As it is, too much fat still sickens me so I may have to settle for a stable weight where it is and not presume I’ll be able to gain. I never have had an easy time gaining weight but could always lose it without too much trouble.  I would prefer not to lose any more though.

So much for today’s posting. I’ll keep at it every 5 to 7 days unless something major occurs causing me to think it’s worth writing about sooner. Meanwhile, live each day like there’s no tomorrow.