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.