Do you want some cheese with that whine?

I know that I've mentioned in past posts that the nurses are always looking for typical ailments that appear to happen in proton radiation treatments.  Sore throat is at the top of the list, followed by hair loss in the treatment area, dry skin, sunburn like feeling, etc.  Up until now, I've been able to answer "no" to all of those.

This morning, I was looking in the mirror and noticed that the temple area just in front of, and up from my left ear has no hair.  I had to laugh because it looks like someone had done it as a prank.  You know, those college days pranks when you pass out drunk and wake up with half of your head shaved and permanent marker all over your face.  I wouldn't know.  I never went away to college or did the frat boy thing, but if I had, I would have been the one with the razor and Magic Marker.

Then there is the sore throat.  

Protons emit radiation.  That's their job, and why I am going through this.  It is much less potent than Gamma ray, and much more targeted, but certain collateral damage is to be expected.  The tissue in your throat is very sensitive, and mine is burned.  One of the tumors was close enough that the radiation bled over and irritated the tissue.  To make matters worse, there is a matching spot on the very back of my tongue that is also burned.  The combination of the two has made it hard to swallow.

I've been dealing with the loss of chewing muscles on the left side for months.  I could chew on the right side with little or no problem, but the left are completely useless.  Chewing crunchy things like nuts or crackers started to become painful recently, so I shifted to softer foods.  

The real problem started a few weeks ago when those chewing muscles started to rebel and cramp up.  I think we all have had a leg cramp at some point in our lives, so imagine having a cramp in your face.  There's nothing you can do.  With the help of steroids, we have kept the muscles from cramping, but now they are in a clenched position, that makes it look like I'm growling with my left side and smiling with my right.  What this all comes down to is that I can barely open my mouth enough to put a spoon in.

I thought I hit the grand slam when I discovered that anything wrapped in a flour tortilla was the perfect solution to all of my eating problems.  It was going good over the past couple of weeks.  I was rolling some pretty tasty things like, Sardines with Louisiana Hot Sauce, chicken fingers with Hidden Valley Ranch Dressing, beans and rice with Heinz Bold and Spicy Barbeque Sauce.  You can get pretty creative when you have to.  Janine, my Nutritionist, is always preaching 25grams of protein per meal, with complex carbs, and plant based vitamins and nutrients.  Throw some raw spinach in with the wrap and I'm good to go.

Now, things have changed.  Eating has become nothing less than torture.  If I can actually open my mouth wide enough to get it in, it is painful to chew, and even more so to swallow.  It looks like for the time being, soup and smoothies are going to be on the menu.  The next step will be anything that I can get past my lips by way of a straw.  

I don't mean to use this as a platform to whine about my struggles, and generate sympathy.  Compared to the man in treatment #4, my struggles seem insignificant.  But, they are real, and each of us has to figure out a way to navigate through them.  

The other morning when we were delayed and began sharing our stories with other patients, a woman next to me said, "Thank you for sharing your story.  I've had cancer four times now, and none of them were anywhere near as bad as you have it.  Yours is a powerful story."  From my perspective, I don't feel I have it all that bad, but from hers, mine is worse. 

I wouldn't wish this on anyone, but at the same time, I can't help but seeing this as, as much of a blessing as a curse.  It changes everything.  The way we look at life, and love, and our fellow man.

I'm sure that even in that same room of patients, there are those who would disagree.  Those that would refuse to see any blessing, seeing only the curse.  I suppose this goes back to how we choose to start our days.  Everyday, we are given a choice.  Maybe the secret is in making the choice everyday, so that when a tragedy comes along, you're already prepared for it.

I had my second CT Simulation today.  After treatment tomorrow morning, I will meet with the doctors and nurses to review my progress through week three.  Hopefully, we will be seeing shrinking tumors, and healing tissue.

If I don't talk to you before then, have a beautiful and blessed Easter.