Monday, May 23, 2011

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.





9 comments:

  1. Hmm, very interesting. Glad you are being so attentive and cautious, and that you have the Super Food Manager (Leslie) at your side. One day a time, eh? And are you still doing the dishes? Love you,Ms Robin... hugs LISA

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  2. We have so few dishes here, we just sort of wash as we go. But, I am trying! Thanks for your stream of well wishes, Lisa, via here and email...

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  3. Watermelon juice in with the vegie juice might help to ease your throat. Or as a chaser to rinse the throat with something it seems to like. Perhaps a liquid sandwich, with the vegies in between watermelon slurps.

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  4. Nancy's idea above sounds really good. I'm so glad you're around, Nancy! You have wonderful advice!

    Food Ideas:
    -Flan, custard, or "watery" rice pudding.
    -Mushroom broth. (Works really well with dried porcini mushrooms, celery, onion, carrot, miso, etc. Strain out all food particles.)
    -Creamed turnips or spinach

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  5. Oh...what about creme fraiche? It has a really smooth and silky texture.

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  6. Thanks for the advice everybody!

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  7. Hi Robin,

    Lisa shared your url with me. Just wanted you to know you have yet another well-wisher following your progress!

    Nancy Degnan

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  8. Hi, Nancy. Enjoying retirement?

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  9. Retirement is even better than I thought it would be, and I thought it would be pretty darn good!

    Nancy

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