Adventures in ingestion

Short version

I am on a mostly liquid diet.  Things hurt that are surprising, but some things don’t hurt.  My relationship to food is completely different, but I am maintaining a balanced diet and haven’t lost weight.  I hope I made the right decision not to get a PEG tube in.  Leslie is wonderful as she helps me deal with my limited ability to ingest. I use drugs to help in the process.

My lover affair with watermelon is continuing.

Long version

As I mentioned earlier, a whole lot of people who go through this get a  PEG tube (feeding tube) before the treatment begins. Then, it is there when you need it in the latter weeks of treatment. But I read a lot about it and realized that my recovery would be much faster without it (but only if I could remain hydrated and nourished.) Plus, of course, there were a series of dangers with the PEG tube. Leslie—she’s a wonderful partner; I’m so lucky—said she was willing to cook and shop and experiment to come up with things that worked to keep up my hydration and nutrition. With her support, I felt I could do it. So, I decided against the tube.

It could, of course, be inserted later in the process, but the risk is higher.  All my doctors felt that I could do without—the Stanford doctor said only one out of four patients get one—so I felt pretty confident that I could do it.  However, my mistake was reading the 76 throat cancer blogs here.  The vast majority of these people got them installed, and virtually all of them said: “Wow, I am glad I had my PEG tube” or “Don’t even think about doing it without a PEG tube.” Most of them also had a later stage cancer than I did, but even the other stage 2 folks got them. Yikes!  Was I overconfident?  But I ran it—again—by both my oncologist and radiologist and both seemed to think I would do fine…So, I hope they are right. 

I have never thought so much about food in my life. Leslie is the one who thinks about food.  Generally, I just eat it. (And it’s fabulous.) And I do the dishes. Now, I like food a lot—don’t get me wrong.  But, I don’t cook.  If Leslie just disappeared (in a rapture-like event, for example), my nutrition would just plummet because I hate to cook.  It is a wonderful thing in our life that Leslie likes to cook and I like to do dishes.  And, Leslie is a wonderful cook, as most of you know. Again, how lucky am I?

Anyway, most people lose a lot of weight during this treatment—in the several dozen blogs I read, the range was from 15-50 pounds—whether they have a PEG tube or not. Malnutrition is a real worry and, often, reality.  I purposely tried (and succeeded) to put on several pounds for extra padding. So far, I am fine. I have had 16 treatments and I am still exactly where I started (149 pounds). 

Anyway, I can’t really eat any more—at least, as the term is generally understood. If it is a really soft, melt-in-my-mouth sort of thing, then maybe.  But lots of surprising things hurt to eat.  Leslie made a very nice broccoli/potato puree last night and it was a 5 in pain before drugging myself.  Who knew broccoli would sting? (The potato doesn’t sting.)

So far, the big winner in the food sweepstakes is watermelon.  If my mouth is a little sore when I start drinking the juice, it is less sore by the time I finish drinking it.  It is a miracle juice. 

To prepare for a meal, I first take lidocaine to numb my mouth.  At night—when my mouth is particularly sore—I add a vicodin and wait for it to kick in before eating.  This doesn’t eliminate the pain, but it makes it much easier to eat.  In any case, I gotta accept the pain in the process, or I might as well get the PEG tube now.  For those who like details, here are the things I have successfully ingested in the last few days in order from least to most painful.

·      Watermelon juice

·      Lots and lots of water

·      Coffee alternative (barley based) called Cafix

·      Miso/tofu

·      Strawberry shake 

·      Pear smoothie

·      Prune juice/Gatorade combo 

·     Gerber’s baby oatmeal (with butter) 

·      Scrambled eggs with very milky potatoes and grated cheese

·      Nestle’s strawberry “quick” with rice milk and protein powder

·      Metamucil and water

·      Yogurt/blueberry jam

·      Leslie’s juice concoction (hurts, but loaded with needed nutrients)

·      Bean soup/ yogurt

·      Avocado and mayo

·      Cantaloupe/ yogurt/ protein powder/ rice milk shake

·      Broccoli soup

If you have any ideas out there, feel free to suggest them.  We are like a little science lab here.  Next up:  does pea soup hurt?  Can I handle fish?  Stay tuned…

Well, you didn’t have to stay tuned long, as I didn’t post this before dinner last night. As it was, yes the pea soup was ok, but it really helped to use a straw so it was directed to the back of my mouth where there is less pain.  And, amazingly, this non-fish eater thought the fish was great.