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.