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.