November 25, 2011 – It’s Time to Shut It Down

I’ve reached the point where I believe I’ve fulfilled the purpose of my blog. It has given me a place to vent, kept my family and friends informed and, I hope, provided a place for other victims of oral cancer to understand what they might go through.

So what have I learned? Well, not as much as one might think. I did learn that I have a wonderfully loyal wife who did everything she could to keep me going when the going got rough. She was just great during my ordeal and I couldn’t ask for a better life partner. I learned that I could depend on good friends to care and take an interest in how my recovery was progressing. I wasn’t forgotten; at times they cared more about me than I did.

I also learned that my belief system was well thought out and survived the misery and trauma of treatment.  I never “found God” just because I might die. There ARE atheists in foxholes. I’ve been a non-believer for as long as I’ve been cognizant of what belief is. Now I know I always will be. I don’t think that’s either negative or positive, it is just how I am wired. I learned I’m not afraid of death for reasons I don’t know. It’s possible it’s because I feel I’ve done all I want to do in life and now I’m on a permanent vacation.

In addition, I never deviated from my belief that, for me, quality of life is FAR more important than quantity. I want to live well (however I define it) or I want to get off the stage. I also learned that the human body can take quite a bit of abuse and recover if you keep at it and don’t give up. As down as I was much of the time, I never stopped trying to heal myself.  Chemotherapy, radiation, various drugs with awful side effects, inactivity, weight loss and even a bad attitude were not enough to get close to killing me. The medical team did its job and I’m well enough to live a mostly normal life again at age 63.

It’s now been 6 months since my last treatment. What am I left with? Disregarding my previously mentioned muscle wasting condition (which is taking a toll of its own) I feel pretty much the same as I did before diagnosis. I have the same energy level, same sense of well-being and a general sense of good health. I’m back to being an arrogant jackass at times. What I’m stuck with is oral damage that affects my ability to taste, chew and swallow. The lack of saliva leaves my mouth in various levels of dryness as well as leaving me vulnerable to tooth decay (I brush at least 3 times per day now). My jaw is always tender and sore as is part of my tongue. My throat is damaged as well and I have to clear my throat more often especially after I eat.  I also snore which I rarely if ever did before (more saintly tolerance from my wife). My doctors say that any improvement in these areas will be in the first year after treatment so I have until next May to start to taste sweet things again (that’s the biggest taste loss).

So that’s all folks. I’m back to playing golf and performing with my band (the two major activities before I became ill).  I want to thank the readers of this blog for their loyalty throughout my ordeal. I enjoyed writing it but I sure didn’t enjoy the reason I was writing it. But life is for the living and I’m still on this side of the daisies so I’m thankful for that. I hope all of you enjoy good health and have a long and happy future.

November 11, 2011 – Things Continue To Go Pretty Well

The last two weeks have provided proof that I’m closer to normal than I have been since March. My band had its first gig last Saturday, I ate a Big Mac, had some pizza for lunch yesterday and have eaten a wider variety of foods as time has gone on. Taste is compromised but I can taste many things. I’m also back to playing golf on my regular schedule (about 3 times per week).

The band gig worked out better than I expected. I did sing all my regular songs plus a new one. I did………ok. I’m not thrilled but nobody threw tomatoes or had pained looks on their faces (bands can really see the reactions of the crowd very well) so I guess it was adequate. The establishment invited us back to play again.

The Big Mac treat was on a whim. I was coming back from somewhere recently around lunchtime and started to think of what I was going to have for lunch. McDonalds beckoned and I remembered that during my more lucid times during treatment I wanted a Big Mac. I don’t know why but I always did like them. So I bought one and brought it home since I wasn’t sure how well it was going to work out. I didn’t want anyone to see me eat it. I ate it slower than usual and it tasted dryer than usual (probably me) but it went well. I think that denotes progress of sorts.

Going forward I’m hoping I get a bit better in the swallowing, taste, and saliva departments but if I can’t get better, I hope I don’t get worse. Radiation damage being what it is, it could go both ways. I’ll settle for the status quo if that’s the best I can do.

And finally there’s golf. I play but extremely poorly compared to a few years ago. It’s not because of the cancer or treatment but because my legs are so weak. Golf as an activity is likely winding down since ineptitude in that sport deems it unenjoyable. We’ll see how it goes.

My postings in the future will be fewer and fewer unless something noteworthy comes up either positive or negative. This was quite a journey and one that I don’t look back on with any kind of appreciation. It totally sucked and I’m damaged because of it. My wife was wonderful throughout.  Unfortunately she has to suffer now because I snore at night due to my damaged throat. But I’m alive and life is pretty decent for the most part so if there is no recurrence, the treatment was the right decision.  Life goes on.

October 29, 2011 – Mmmm….Soft Cardboard with Tasteless Syrup….Yum!

Now that I’m back “out there” I’m being asked a lot of questions about how I’m doing and what I am experiencing. First of all, I feel pretty normal every day with the exception of my mouth and head. I’m sleeping well. I take no meds except for some aspirin before golf.  My daily energy is what it was before treatment.  I eat most things that aren’t hard or crispy.  My continuing problems include a dry mouth and limited taste in addition to some problems swallowing some foods. I haven’t really gained much weight despite my last posting to the contrary. The mouth dryness dominates my day. My mouth never feels “comfortable.” I also bite my tongue more often. Actually my tongue doesn’t feel that normal either. I’m sure all of this is due to radiation damage and by next summer I’ll know how much improvement I’m going to have and what I’m going to be stuck with. Other ongoing problems are a chronic sore and stiff neck and sore jaw.  I still worry about my teeth as well and brush, rinse and chew gum to keep decay at bay.

Yesterday morning I made pancakes for breakfast and flooded them with the usual copious amounts of syrup. I remember how sweet that meal is. But to enjoy it at all I have to think about what it used to taste like. Tasting by memory.  In this case it tasted like mushy cardboard. Not that I ever ate mushy cardboard.  This lack of taste affects my desire to eat so I have to force myself most of the time. That kind of sucks but it is what it is. I do get hungry though. I also get a craving for sweets every now and then but eating a candy bar or cookie doesn’t do any good. Chewing is also an issue for anything that’s not reasonably soft so in public settings I have to pick and choose what to eat. It’s either that or sneak away into a corner somewhere and gnaw away at a piece of chicken.

Another question I’ve been asked is if I would do it again (treatment) now that I’ve recovered pretty well. This comes up because I spent much of the summer hoping I wouldn’t wake up in the morning or wishing to be struck by lightning. The answer is yes but only because I’m doing pretty well. If the cancer returns or something else happens to me, I may look at it differently. As it is I still have a sense there is more (of something) to come either soon or not far off in the future.  I don’t know why. I’m getting old and have spent the last 5 or 6 years dealing with physical decline so maybe that’s why.

Band practice continues and we now have a gig next Saturday. It’s a new place for us so if it’s a disaster it will be the only time there. My vocals are still hit-and-miss so I may be mostly a guitar player. We’ll see.

October 20, 2011 - A Hamburger and Fries!! Wow!!

Yes, it’s great to be able to eat unhealthful food again. I seem to be progressing at a very rapid rate the past few weeks adding things I didn’t think I’d ever eat again. For lunch today I decided I just wasn’t in the mood for yogurt or scrambled eggs again so I ordered a hamburger and fries from PT’s Grill (a local hamburger chain). I was amazed at how well I was able to eat that even though I needed to wash it down with some extra liquid.  Since I wrote last week I’ve eaten the stated hamburger and fries but also garlic bread (soft but good) regular bread with butter,  5 peanuts (that didn’t work out too well) candy bars, a pecan pastry my wife made for another occasion, and some other things that seem to be going down easier than I expected. I’ve yet to try a deli sandwich because hard bread still seems impossible to me.

I think I’ve finally gained a few pounds. If I keep eating junk food I’ll probably pork up just fine – then die of a heart attack! I had a visit with RadDoc today and it was the best visit I’ve had so far as I was finally able to convey how well I’m doing. Most of my visits have been a litany of complaints about how miserable I was. From now on I’ll see RadDoc every six weeks and my ENT doc every 6 weeks alternately. So I’ll see each of them 4 times over the next year.

My band practiced again last night and I found that my new chewing gum habit is helping me maintain my voice. It’s not quite as croaky and it’s also a little deeper and richer that before my treatment. My voice was always marginal anyway as far as singing leads but now it seems to have a new fullness with a deeper tone. It sounds a bit like I would if I had a slight cold. We’ll see what happens down the road as my throat continues to heal. As far as guitar, I’m back 100%.

It’s great to feel mostly normal again and if my progress continues maybe I’ll get more of my taste buds back (still can’t taste sweet things) as well as more saliva to make eating more enjoyable.

October 13, 2011 – Pot Roast or Chicken Chewing Gum??

October 13, 2011 – Pot Roast or Chicken Chewing Gum??

No, I don’t believe anyone actually makes this kind of chewing gum but as I continue to progress by trying to eat anything that suits my fancy, I’m finding a real challenge eating meat. I chew pot roast or chicken and chew and chew and chew and nothing much happens. I need to add liquid or mix it with squash or mashed potatoes to make it easy to swallow. Imagine the driest chicken you ever tried to eat and you know what I mean. Sort of like rubber chicken I suppose.

I also ate my first wrap sandwich yesterday. That worked pretty well (but very slow) but I’ve yet to try anything with real bread, a roll or other “sandwich like” food. I may have to give up on things like hamburgers for a long time or maybe forever. Deli sandwiches too.

Speaking of chewing gum, I found a short term cure for my need to take water with me everywhere I go. Sugar free chewing gum produces enough of my limited saliva to keep my mouth in reasonable shape while I’m in a store or something. I went to a play on Saturday night but needed to sneak water in there. Too long for gum.

Last night my old band members came over for our first practice. That worked out pretty well considering we haven’t played together since April. My voice sucks but I could croak out some harmonies and did some vocal leads that were not good enough for public consumption. Maybe in time I’ll get my voice back – but maybe not.

In conclusion, I continue down the road to recovery. I feel normal most of the time now except for my constant dry and annoyed mouth ( I seem to bite my tongue and lips more frequently) and the challenge of eating and “oral hygiene” I have to cope with all day long. Food is still something like medicine in that I do it because I have to but I’m adjusting. I was told I would have to adjust to the “new normal.” I’m adjusting, I’m adjusting.

October 5, 2011 – “You’re Swallowing Better Than Most Oral Cancer Patients”

As noted in the headline, I had my swallowing test today and that’s what I was told. I don’t have any problem with aspiration and was also told I can eat whatever I’m comfortable with. I was pretty much doing that anyway so I’m glad I’m ok. Of course everything is relative and I still have limitations especially when it comes to spontaneity. Last night I was at a Focus Group event and they had small sandwiches and cookies. I looked at them and decided it wasn’t a good idea since it takes so long for me to chew, swallow, and clear my mouth of everything that collects around my teeth due to my shortage of saliva. Rinsing is almost always the minimum I have to do.  I have to “plan” to eat and clean up now which certainly will keep me from ever getting fat.

On Monday I saw my ENT doc and he said I should improve for up to about a year after treatment was complete. That was May. I also know from research that because radiation treatment is “forever” things could also get worse down the road.  But for the next 7 or 8 months taste and saliva as well as swallowing should improve. We’ll see how it goes. I can taste most foods now with the exception of sweet things. I also do have some saliva.

Back to eating. I have to add liquid of some sort (water or milk usually) to anything that is remotely dry. I usually start to chew something and then take a sip of liquid to help get it ready to swallow. However, water and milk are not saliva so even that doesn’t quite always produce the same result as you’d get from a normal amount of saliva being involved. But I end up being able to swallow it anyway. It just takes more time and more conscious effort. But progress is ongoing. I ate an English muffin one day – my first bread product -  and also ate a couple slices of leftover pizza that were in the freezer. Again, I had to sip along as I ate but I was able to eat them anyway. Breads are one of the toughest things to eat for those who are “saliva compromised.”

I’m playing more guitar again. My old band members are coming over next week for our first practice since probably February. I can’t sing well yet (and most of my friends are kind enough to remind me that I never could) but I’ll at least be able to add my rhythm guitar to the band’s sound.

Overall I feel much better. Fewer naps; less fatigue. My increasing muscle problem is worse and that will probably end my golf and music participation more so than any effects from cancer and the treatment. But this is a cancer blog and I’ve improved immensely in that regard.

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.