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.

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.

August 26, 2011 - A Hurricane and a (Brief) Reprieve

Let me just say that I know that I haven’t been handling my miseries in a very commendable manner. I’m doing nothing but whining and moaning as I suffer the worst summer of my life. I suppose I should be looking at the positives and trying to take an optimistic approach but that’s just not working out for me. I’m also disappointed that I’m not able to write good things here as each day repeats the previous one. But that’s just the way it is.

Yesterday I had my RadDoc visit and sure enough he said I’m healing and was happy with what I’m doing to try to save myself (mouth feeding, dental care etc.). He also said the CT scan found NO CANCER. That bit of good news was expected so I didn’t have much of a reaction to it.  He still has no idea when I’ll stop hurting. So he put me on Oxycontin. I take that twice a day which I hope works out better than taking Oxycodone every 4 hours. Now I don’t have to get up at 2 AM to take pills.

About the reprieve – when the doctor was scoping my throat the numbing agent (Lidocaine) he uses in my nose trickled all the way down my throat causing me to cough a little because it tastes awful. However, it coated the most painful area of my throat so when he told me to swallow it was PAIN FREE!! I couldn’t believe it. One of my first comments was I wanted to go eat a Big Mac! Then I went and drank a whole bunch of my water because it felt so normal to do it. Pain free. First time since April that has happened.

That lasted all of about 15 or 20 minutes but I now have something else to try at home. I’ve been using Lidocaine at home but in a diluted manner. Now I’m going to try to squirt it full strength right on the sore spots. I can only do that 4 times a day or I suppose other damage will occur.

Finally I write this as a hurricane bears down off the Carolina coast. The storm will just miss us but still bring high winds and plenty of rain. I told my wife I was going to park myself under a tree that looks likely to collapse and put me out of my misery. Good luck picking out the tree. Instead I’ll just soldier on and survive to suffer another day.

“The secret of life is enjoying the passage of time.” That’s from an old James Taylor song. I think it’s profound. I also lived that way. I don’t anymore. I loved the day-to-day rhythm of life and used to find holidays and other variations from a normal week disruptive. “Celebrate the routine.” That was another saying I enjoyed because life was mostly made up of routine activities and if you don’t “celebrate the routine” you can’t enjoy the passage of time.

Enough BS philosophy from a sick old man. “Live each day like there’s no tomorrow.” That’s my new one. I’ll shut up now.

August 21, 2011 – I’m Food Obsessed – How’d That Happen?

My wife reminded me that I was never a foodie. She’d ask me what I ate for lunch or something and I’d have a hard time remembering. I just didn’t care. Now, I spend most of my day trying to figure out how I’m going to get enough calories into my body to keep my weight up. I’m hanging in there.

There’s really not much new to write about. Pain is the same when I swallow. I’ve been good at only eating by mouth for the past several days with my goal of getting rid of the feeding tube. I’m not sure if I’ll succeed. I’m also – again – going to try to wean myself off the narcotics. I’m not sure I can pull that off either.

Other than that I’m trying to stay active; I played 9 holes of golf today and I’m playing Tuesday night. It all wears me out though. After golf I needed to take a nap for a couple hours. My loss of weight and the cancer treatment leaves me with little energy.

Tuesday I have my CT scan. Finding out I don’t have cancer anymore will be a ho-hum bit of information since I’m suffering far more from the “recovery” than cancer now. I’ll see RadDoc on Thursday who will tell me (again) I’m healing (right) and after that I’ll continue to try to adjust to my “new normal.” I want to spend the rest of my time without a feeding tube and without narcotics. Then, whatever happens to me happens but I’ll be in some version of a normal state when it does.

Until next time – live every day like there’s no tomorrow.

August 17, 2011 – Well, That Didn’t Work Either

My throat was sore enough early this week that I asked for an appointment to talk about the possibility of my having thrush again. I had taken meds for it before with some good success. My doc was out this week so I saw a different one. He stated that for me to still have pain 12 weeks after treatment is over almost has to be thrush so I received another script for Diflucan. I took 2 on Monday as prescribed and by Tuesday my throat was somewhat better but not as much as I thought happened last time. So maybe it’s not thrush. Unfortunately I also regained my nausea and indigestion that I now believe I also had during the last treatment. Tuesday night was hell as I sat in a chair for nearly 3 hours hoping I wouldn’t throw up my beef stew that I had for dinner. With my stomach the way it was I think I ate too much. So now I have somewhat less throat pain but less ability to put as much food into my stomach. It’s always something; I can’t seem to win. I’m just not going to heal I guess.

I’ll finish the thrush script and return to my life as a sore throated cancer survivor who has to learn to live with this. Next Tuesday I’ll have my CT scan to prove the cancer is gone and then see my regular RadDoc on Thursday. After that I’m going to try to feed myself exclusively by mouth despite the pain so I can get rid of this feeding tube. As I said, I’m going to have to learn to live with my new normal. I have to be able to maintain my weight for a period of time (I think a month) before they’ll remove the tube.

If I succeed (not a certainty), it will free me up somewhat but I’ll need more variety of squishy food to keep me interested. I’ll need food I can take with me to the golf course or other places so I can eat if I’m gone for any length of time. This won’t be the ideal life and it’s not what I envisioned but for now I need to adjust to the facts as they are right now. I’ll be able to play golf again and not be so structured by my current food needs.  Wish me luck. I could certainly use a break.

August 13, 2011 – So Much Good Yet It’s Not the Whole Story

By almost every measurement this was a good week. Almost. Ever since Sunday I’ve made a concerted effort to feed myself by mouth more than I have in the past. I’ve eaten oatmeal, milkshakes, beef stew (sort of) various chicken soups, a bean soup, scrambled eggs with cheese, yogurt, ice cream, Instant Breakfast and probably other food I can’t think of at the moment. I can taste my food, I do have some saliva, I can swallow (with pain) and those are all great accomplishments. My body feels much better putting normal food into it instead of the chemo-crap that I was depending on for the past few months. My color is better too. I’m a healthier dude even though I haven’t gained any weight. I still eat one can of IsoSource (through the tube) and usually one can of Boost but mostly I’m trying to get used to eating again with the hope of getting rid of this feeding tube.

So what’s so bad about that? My throat is absolutely killing me. Each feeding session is fraught with a shaking body, a rapid heartbeat, a runny nose, pacing around, almost sweating, grimacing with every swallow and general misery as I go through each “meal.” I’ve increased my pain meds to 2 5MG every 4 hours (Oxycodone) but that’s not enough to kill the pain entirely. I don’t want to add more pain pills because it slows down digestion even more and inhibits my ability to eat. So I’m eating but it’s a major (and painful) chore.  My weight has stabilized but my energy level is still low and I wouldn’t call my daily life enjoyable at all.

I did some more research on cancer survivor websites today and there is no doubt that not everyone comes out of this with a semi-normal life. I’m not even sure the majority do. Some people have no ability to swallow, some still have a feeding tube after a year (likely my fate), some still live on IsoSource (with the same sickness miseries I’ve experienced) and on and on. Another common theme is that everyone’s doctors tell them the same thing: everyone is different, this will get better in time and they seem to have trouble acknowledging that some people really don’t get better. Or, they survived but their life sucks. I’ll call it success bias. Patients who come out of this eating well after 6 months dominate their thoughts regarding recovery so that’s what they tell their patients. Radiation damage continues to accrue over time with people losing thyroid function (one of three patients so I’m told), swallowing abilities, teeth and gums, scarring of the throat, voice problems and more.

So the bottom line is this:  I have no idea and no way of ever knowing how or if I’m going to recover.  Oh sure, everyone hopes for the best for me but nobody really knows for sure. I welcome the good wishes (“you’ll be fine, just hang in there”) yet I know the limitations of those hopes. Will I eat normally (or mostly normally) some day? Who knows. Will I start to lose swallowing ability even if my pain finally goes away? Will the pain ever completely go away or am I on pain pills until the end of (my) time? Nobody knows. So I continue to live day-to-day spending much of it thinking and cringing about food. I do get out. Today I walked a mile on the treadmill with some weight work afterward (light). I did yard work this week and shopped and did other errands. But I make no plans to do anything as each day seems to be a battle just to get to the next day.

But battle on I will and I’ll see what happens.

August 8, 2011 – I’m Supposedly Healing – You Could Fool Me!

I visited with my ENT doctor today. I wrote down all my questions and concerns and I knew I was upset when I had a hard time reading them off through a trembling voice. He listened carefully and checked my throat  and told me again that I’m healing. But, again, he can’t give me a timetable regarding when I’ll start feeling better so I’m pretty much where I was before the visit. Still, I’m glad I spoke with him.

Yesterday (Sunday) I decided to try and make it an entire day without using my feeding tube. I had chicken soup, eggs, Instant Breakfast, Beef Stew (mashed up), milk shakes and whatever else I may have forgotten. I ate everything. I increased my pain meds and used my viscous lydocaine some of the time to help me eat. Finally by evening I gave up and took in some Boost by tube. Today I mixed it up a bit more. It’s good to get a variety of regular foods into my body and I do feel better with regular food. I don’t know how anyone can live on just IsoSource and Boost or Ensure. It’s just not natural. My wife has created a variety of stuff for me to eat and I’ll continue to endure the pain and eat normally. But it hurts.

So going forward I expect my days to be much the same as the past two since I have no way of knowing when my throat will start to ease up and heal. I spend each day thinking about what kind of food I’ll eat and how and when I’ll eat it.  Trying to minimize the tube does give me more options even though I can get a milk shake (diluted) and chicken soup down my tube.

I did some yard work today and also went out of a few more errands. Water bottle in hand and I time things to make sure I’m home for pain med time as well as eating. It’s not a great life but that’s my life for the foreseeable future I suppose. I really, really look forward to bed time so I can be unconscious for about 8 hours.

August 5, 2011- Ongoing There Will be Fewer Postings

August 5, 2011- Ongoing There Will be Fewer Postings

Three days have gone by and there’s not much to write about. From now on there will be fewer postings on my blog since each day is the same as the one before. In general my new life is getting up in the morning and trying to figure out how to get some real food past my (seemingly) permanent sore throat into a stomach that also seems to be perpetually upset. Unless that changes I don’t have much else to say. I’m weak and feel like I’m one opportunistic illness away from being in medical trouble. I’m either going to get better or I’m doomed.

My wife made some great beef stew a couple days ago and I was soooo looking forward to eating real food. I took extra pain pills (I’m back on my old schedule in that regard) numbed my throat with Lidocaine and ate a good size portion of ground up beef, vegetables and potatoes. My stomach loved it – for about an hour. Then it started to feel like it usually does. Last night I decided to do the same thing and while I know I need real food, my stomach was severely upset for hours afterward. That’s my life right now. I just cannot catch a break. Today I’ll skip the stew but plan on trying again tomorrow with maybe a smaller portion.

That’s it for now. I’m extremely discouraged with my lack of progress with nobody really able to offer me any help. I see my original ENT doctor on Monday and if he has anything new to offer I’ll post it here. Otherwise I’ll try not to go more than a week without saying hello. Thanks for reading all these months and I’m sorry it’s not more of a positive blog. But it is an honest one.

August 2, 2011 – Another Day, Another……..Day.

Each day does feel like the day before now. I fight pain, queasiness, and boredom and I struggle to figure out how to get enough nutrition into my declining body. I’ve tried night feeding, day feeding, gradual feeding, frequent small feedings and every other configuration but the junk I’m trying to live on will only go in so much before my stomach rejects it. So, I’ve been forcing myself to eat more real food by mouth.

I get up and have an Instant Breakfast made with mostly half-and-half instead of skim milk and drink the whole thing. Then a few hours later I make oatmeal from one of those packets, again with half and half and eat that too. By then my throat is on fire so my next meal is usually the hated IsoSource that I let trickle down my feeding tube. Today I also ate about half a milkshake as well as some soup. My wife and I decided I need a more balanced diet instead of this high fat high sugar junk that is trying to kill me so she’s going to make some version of beef stew that I’ll eat the best I can.

I’m also trying to wean myself off these narcotics so I’m down to one 5MG Oxycodone combined with one 500 MG of Acetaminophen. I think that means I’m taking a homemade Percocet now. I’m also taking them every 5 hours instead of 4. I’d like to see how my stomach acts without any narcotic running through my body.  

From what I’ve been reading, many cancer patients seem to have trouble eating. Like me they feel full after a relatively small amount of food. I don’t know why I’m not hungrier and don’t know why my stomach rebels from a relatively small quantity of food but it does. That’s keeping my weight at a precarious level (still down about 20) but recent blood tests don’t show any medical issues from malnutrition so I guess I’m ok at the moment.

I’ll keep plugging away at this and can only hope that I’ll get out of this horrible rut I’m in. I’m trying everything I can think of. I see RadDoc tomorrow, my ENT doc next Monday and my CT scan on the 23^rd (to find out if cancer is gone; I believe it is). Until next time folks….live life like there’s no tomorrow because you never know when that will be true.

July 30, 2011 - Green Shoots of Hope My Ass!!

 July 30,2011 - Green Shoots of Hope My Ass!!

Here we go again. My throat is killing me today – and much of yesterday. It continues to stay damaged and enflamed despite being 9 weeks out of treatment. The two days it started to feel good were temporary. So today it’s back to almost all nutrition getting in via my likely permanent feeding tube. No oatmeal, no mashed potatoes, little drinking of anything.

Time to adjust to reality Ben. Your future is your present. Live with it. You have a permanent bad throat and will likely never eat normally again. On Wednesday I’ll ask the doctor point blank if he’s ever had a patient fail to heal for many months or longer. He’ll probably lie to me. Or I’ll be his first.

My anti-anxiety meds are working well. I have taken them at night and they relax me and I sleep well. I even managed to get pain meds in at 2 AM with some Boost so I still did a little feeding at night. My days have shown much less fatigue and much less anxiety since I now get a good night’s sleep. I no longer feel the need to nap all the time.  I’m less stressed but more pissed off about all this. That’s a good thing really. Anxiety displays hopelessness. I can live off anger. And I can live this way.

I use the feeding pump in the day time now to pump in a can of IsoSource over a period of about an hour. That hasn’t always helped my stomach but today I discovered something that did:  Diet Pepsi!! I know I raved about Coca Cola a month or so ago and that sort of wore off. But Coke has sugar in it and it added to my bloated feeling. Diet Pepsi(Diet Coke will work too I’m sure) seems to help flush my stomach so I can add more sludge at an earlier time. The caffeine is ok too. I’m ahead of schedule with food today so maybe I won’t lose weight.

On August 23^rd I have my CAT scan to find out if the cancer has really exited the stage. Despite my pessimistic and resigned attitude, I truly believe they got rid of the cancer. I’ll be a cancer survivor with a crappy quality of life. So be it. I was able to sit down and read for a couple hours straight today. I also went to the gym and walked on a treadmill and did some light weights. I’ve been too restless and impatient to do much of anything until now. The anti-anxiety meds and some partial acceptance of my future has helped. I can adjust to this. I have no other choice.

My wife says my mustache has grown in and looks thicker and darker than before. She might be right. My sideburn hair seems to be growing in too so I’ll let it grow. Maybe I’ll let my hair on my head grow long again and hell….maybe a pony taiI.! Why not? Time for a new look.

I  guess this blog is going to go through a transition from how I recovered from cancer to how to live a life after cancer completely screws up your life. When you get lemons……….

July 28, 2011 – Green Shoots of Hope

I know this has been a bummer of a blog for some time now but today I had a small victory. I ate an entire packet of oatmeal by mouth. Yep, that’s what constitutes a win these days.

I’ve noticed the past couple days that when I wake up my throat is remarkably low on the pain meter especially when I swallow. Today I decided to test it by eating more than an ounce or two by mouth. So I prepared the oatmeal with milk and numbed my throat with viscous lidocaine and away I went. Got it down. Eight ounces by mouth. Yippee!! My balky stomach didn’t even rebel too much. Unfortunately as each day has worn on my throat becomes more painful by evening but overall I still think I’m doing better than I was. My stomach continues to be a fragile thing and it’s causing me stress to no end. I decided that I’m suffering from anxiety causing all kinds of other problems (sleeplessness). I saw RadDoc today and he prescribed an anti-anxiety drug (Ativan). I’m going to take it an hour before bedtime and then go have a long sleep (I hope). My only concern (more anxiety!!) is that one of the side effects is…..wait for it…..an upset stomach. Just what I need. This could be another short term fix.

My night feeding by pump is becoming a failure. I have to sleep sitting up which is bad enough but each night the results have been worse than the night before. I was down to getting only one can of Isosource (started with 3 before my barfarama a week ago). Last night the pump didn’t work and I didn’t even care. I just went into the kitchen and stuffed the can into my tube the regular way and then went to bed. I need to sleep at night.

Emotions:  All my normal coping mechanisms of life have left me. My wife says I’ve lost my armor. She’s right. We spent much of life figuring out how to deal with the everyday stresses and challenges. I did pretty well. I took charge, became a good problem solver and never let much bother me one way or the other. It worked very well for me. Now I have NO control and NO coping mechanisms to draw from and hence the anxiety. I’m not sure I’ll ever get the old ways back. I’m a changed man no matter how this turns out. I’m just not sure it will be for the better.

July 25, 2011 - Two Decent Days

July 25, 2011 – Two Decent Days

I say decent days because I was able to take in enough food, my stomach didn’t rebel and my pain didn’t get any worse. Such is what a good day looks like now.

I had my endoscopy today and it didn’t produce any findings to be concerned about. My stomach problems are still likely caused by my pain meds and I've reduced them enough so my stomach is behaving. I also did some “Googling” today to find others in my “it ain’t healin’” condition and I sure did find them. It seems if your throat doesn’t respond in what doctors consider a predictable manner, they don’t know what to tell their patients:  “Everyone is different”, “some people heal faster than others” etc. I found postings of people with many more months of throat pain than was advertised and found equal numbers of people who have lost substantial weight due to eating problems. So, I’m not alone. I don’t necessarily feel better about that.

I’m going to focus on nutrition over pain management at this point. I NEED calories or I’ll just keep losing weight. I’ll use the food pump at night to pump in 2 cans of IsoSource and try to take in 4 others during the day. I’ll also continue to eat some baby oatmeal and other soft stuff to keep my throat from giving up completely.

Emotions:   I really am a mess. I’m very emotional and distraught as this moves forward – or whatever direction it’s going. I feel lost and often helpless and hopeless as each day mirrors the day before. I’m still searching for a purpose in all this and have to wonder if life will ever be good enough to justify what I’m going through. I just don’t know.

July 23, 2011 - Grinding On

July 23, 2011 – Grinding On

Last night I used the feeding pump for the first time in 2 nights and used a slower pumping rate as well as using one less can of “food.” It seemed to work – at least I didn’t wake up vomiting this morning. I’m still not taking in enough nutrients to sustain myself. My stomach remains in a state of uneasiness that nears nausea so any effort at feeding me is a forced activity based on my intellectual understanding that I need to do it. I’d rather be hungry!!

I put a call into my gastro doc and he’s scheduled an endoscopy for Monday morning to check for any blockage or any other problems. I predict he’ll find nothing wrong. He also told me to try to get off narcotics. Well, I was already trying that after my experience with the Thrush meds. I’m down to 1.5 pills every 4 hours instead of 2.5. I’m staying there because there is still enough pain to warrant it. He’s probably on to something about the pain pills but this is EXACTLY the “catch 22” I’ve been referring to. I’m screwed.

I feel sorry for my wife having to endure watching me wasting away. She just doesn’t deserve to have her life disrupted by trying to take care of a decaying and barely functional husband. She’s strong and healthy; she deserves better.

I don’t even think I’m a cancer patient anymore. No visual sign of it; the upcoming CAT scan (within a month I think) should prove that.  I’m now just a malnourished wreck of a man and there seems to be nothing that can be done about that. I appreciate all the kind words (“you’re gonna be just fine”) but I admit they sound hopeful but empty. But I also understand that there’s really nothing else for anyone to say. Nobody and I mean NOBODY really knows if I’m going to be ok.

On a good but totally unimportant note, my beard is starting to grow back in some places. My mustache which was almost gone is coming in darker and fuller again. The hair on my head never left but did feel thinner. It’s thicker now too. I want my stomach and throat back instead.

July 20, 2011 – An Up and Down Few Days

July 20, 2011 – An Up and Down Few Days

Gee, where do I start? I’ve been using this night feeding pump for 5 nights now and have adjusted to the process. It seemed to be doing the job of getting 3 cans of IsoSource into my stomach over a 9 hour period leaving me 15 vertical hours to get the other 3 in. At least until today.

I woke up around 6 AM again and detached myself from the empty pump container and went back to sleep feeling a little full but ok. By 9:15 AM I was violently sick. The most vomiting since the chemo days. Now what?

Back to that in a few……meanwhile I went to my RadDoc yesterday and asked if I had Thrush (yeast infection of the mouth) since my mouth and throat were so horribly sore. He said I didn’t but I talked him into prescribing Thrush meds anyway (nothing to lose). With these you take 2 pills the first day and 1 each day for 6 more days. Well, I took the first 2 pills yesterday and by this morning the pain in my throat and mouth was less than 50% of what it had been. I could talk again without pain or sounding like Donald Duck. I looked at my throat with a flashlight and could see the difference. Keep in mind I was busy vomiting during this same period. Again, now what?

The day wore on and I had a scheduled visit with a Gastrointestinal doctor (same one who installed my feeding tube) and I told him my tale of woe. He really didn’t have much to add to my “cure” except to tell me it was ok to have beer for calories and the fact that it might increase my appetite. He said I needed to gain my weight back. Well duh!!!! And if the vomiting continued I could have a blockage (based on the busy non-constipational activities that were also going on this morning, I doubt I have a blockage). This appointment was in the late afternoon and by that time I was feeling a bit better nausea-wise and was showing off my lack of a sore throat by drinking water without grimacing.

Tonight I ate Matzoh Ball soup (my wife makes it great) and ate it the normal way. Then I also had a can of Boost by mouth which makes today the most food I’ve consumed by mouth since Easter Sunday (my last real meal). My throat tolerated it just fine and my stomach has not returned to its previous behavior.

What to learn from all this……..well…..I’m glad I had Thrush early in my treatment so I could recognize the symptoms because 2 separate RadDocs 5 days apart said I didn’t have it ! Maybe I don’t and it was an amazing coincidence that my throat improved remarkably at the exact same time I started taking meds for something I supposedly didn’t have. And maybe I’ll wake up in the morning and my throat will again be on fire. We’ll see.

Tomorrow morning I’m going to try to eat oatmeal and see how it goes. Then it’s mashed potatoes and ground up veggies and other real food. I’m also not going to use the feeding pump tonight; I’ll wake up for pain meds and “eat” something then. Tomorrow is another day and I’ll see what I’m in for next. What a miserable ride this continues to be.

July 17, 2011 - Not Ready for Prime Time

July 17, 2011 – Not Ready for Prime Time

I don’t think I’ll try to socialize again until my health is better than it is now. I visited with some good friends the past few days and I just couldn’t get into the party atmosphere since I can’t eat, drink or even speak very well. Add to that a very low energy level. I’d rather be alone. Everyone is nice and supportive but I like feeling equal rather than like the sick friend. Maybe later.

I was hoping by now that this blog would be a chronological account of my recovery. Instead it feels like I’m documenting a trip to hell (with no return flight). Pain and digestion miseries continue. I’m now using a pump to deliver 3 cans of IsoSource into me as I sleep. It delivers at a rate of 2 1/3 ounces per hour (about the size of a few good gulps of water). I’m hooked up to it for about 9 hours. I could do 4 cans but then I’d be tethered to this thing for over 12 hours. The rest of the day I can try to consume another 3 cans in order to quit losing weight. So far today is the best day with 5 ½ cans. My stomach continues to feel “sick” and slow to digest so that’s the problem. Sleeping with this thing is working out (2 nights so far) although I have to limit my movements and sleep positions.

My mouth is really sore including my tongue and cheeks. It feels like I have Thrush; I had it early in treatment. My mouth is slimy, little bumps are forming on my cheeks again and I have more pain in more places including farther forward on my tongue. Last week’s doc visit didn’t produce that diagnosis so I have to try to do some serious convincing. It was a 6 day anti-biotic regimen last time. I want to try it again. I need something to show progress.

July 14, 2011 - I'm Malnourished. Who Knew?

July 14, 2011 - I'm Malnourished. Who Knew?

I met with a different doctor at my Radiation Oncology practice because I was feeling like I needed to check out my throat since it's not getting better. Turns out I still don't show any signs of cancer but my thoat is NOT healing as fast as it should. Why? Well, I'm malnourished (lost a couple more pounds recently). I referred to my "catch 22" a few postings ago and that's exactly what is happening. Now I'll be seeing a gastro doc and a nutritionist to try to stop the weight loss and get some calories in me so I can heal. What a mess.

Emotions:  I continue to struggle. I'm emotionally drained and the very essence of me has been ripped out of me. I don't feel like the same person anymore. Yesterday I told my wife that I feel like a plant. That's what I feel like.

July 10, 2011 - Trying to Find Good Things

July 10, 2011 – Trying to Find Good Things

I’ll try not to whine much today even though I’ve had no improvement all week.

Things that have NOT been a problem for me:

1.      Radiation burns on my neck:  I did have some during treatment but they were mostly treatable with cream and I’ve healed up nicely. My neck, if anything, looks better than it used to. I know I’m still sensitive to the sun and I’ll take care of that – if I ever get back out in the sun.

2.      Constipation – Even though just about every treatment and every medication “can cause constipation” I had no issues there (oh wait, I shouldn’t say that, there is still time). Milk of Magnesia seems to work for me. End of story there.

Things that HAVE improved:  Mucusitis. I’m producing much less of it now but it’s not 100% gone. I do have a dry mouth but that’s going to be life-long from what I was told early on so I can deal with that.

Having said all that, I’m coming to grips with my new life as a stay-at-home sick slug. I imagine I’ve lost more weight with my appetite issues so this is my “new normal.” I was told I’d have to adapt to the “new normal” so I’ll give it a try. My “new normal” is to sleep a lot, eat what I can when I can and read and watch TV when I have the energy for any of it. I’m throwing in the towel on golf and music for the rest of the year since I can’t be sure I’ll ever be able to handle either again. I’ll wait for the promised improvement in health and energy before trying that again. For the most part, I feel like I could fall asleep at any time. So I’ll go now and  slide a bit of IsoSource into my sour stomach and then go nap. Life is grand.

July 7, 2011 – At Least the Hiccups Went Away

July 7, 2011 – At Least the Hiccups Went Away

That’s about all the good I can speak of today. I cut down my pain pills figuring they were a contributing factor for hiccups (so I hurt more) and only once did I take Thorazine. But hiccups – very disruptive and exhausting - are a royal pain so I’m glad they went away – for now I suppose.  A cancer survivor I communicate with said he had hiccups for 30 straight hours once. That was during chemo. I guess I shouldn’t complain.

My stomach continues to rebel keeping me from eating enough food to keep me from losing weight. It’s not so much nausea as a feeling of indigestion and fullness beyond reason considering how little I’m taking in. I’m not hungry like I was a week or so ago and any hunger pain also feels like very mild nausea. That’ll make you want to eat!! I’m back on IsoSource instead of my Boost diet so I alternate them to some extent. That may have helped with the hiccup problem too.

I refuse to weigh myself anymore since I don’t really want to know. I still take pain pills by mouth but regular food intake is still very minimal due to throat pain. My energy level is lower than last week (probably malnutrition) so golf went to the back burner again. I don’t do much except read, watch TV, sleep and feel lousy. This is not a lifestyle I would endorse.

As I’ve said many times:  This just sucks. I’m told I still have many months of this to go. It’s a new meaning of the phrase “life sentence.”

July 4, 2011 – Hiccups??!! Are You Kidding Me?????

July 4, 2011 – Hiccups??!! Are You Kidding Me?????

I noticed my stomach hasn’t felt quite as good the past few days with no nausea but just some general discomfort. Food hasn’t gone down (tube or otherwise) quite as easily but I was still getting it done. A couple days ago I had a bout of hiccups that lasted 15 or 20 minutes. They were sort of rapid-fire hiccups and I didn’t think much of it since everyone gets hiccups and they did go away. I had another event yesterday and they lasted a bit longer but still went away. Today I still had my stomach discomfort with more difficulty getting food down and still feeling lousy and then another bout of hiccups that lasted maybe 30 to 45 minutes. They went away again. An hour or so later they started again this time lasting over 2 hours. I called the RadDoc about an hour into it and told the doctor on call of my miseries and he said they do have to deal with hiccups sometimes. He also prescribed Thorazine, a known anti-psychotic drug which apparently also works on chronic hiccups. Unfortunately by the time I went to the drugstore it was closed for the holiday so I won’t get a chance to find out what this drug is going to do to me.

I’m very bummed out about this development. I just get somewhat comfortable with my level of pain and my slow progress toward recovery (at least I was maintaining food intake and my weight stabilized) and now this. I researched hiccups and oral cancer and my chemo treatment is sometimes implicated in hiccups but it’s been 6 weeks since I had any chemo so that shouldn’t be the reason. I have a hunch nobody will know why and I’ll be treating something with an unknown cause and a “who knows?” cure.

This disease and recovery just won’t let me go. This is not a good day for me.