Update (after 12 radiation treatments)

Short version:

I have had 12 radiation treatments and my ability to eat has been greatly reduced.  Only very soft foods are possible now.  Nothing acidic or spicy, no coffee or alcohol, or it irritates my very sensitive mouth (salt is okay but I barely taste the salt; sugar tastes like salt so I use that sometimes). Plus, the chemo gave me acid reflux so I wanted to cut all these things out in any case. My pain is controlled by ibuprophen which, in general, works fine.  On the 1-10 scale, the pain is usually in the 2-3 range, if at all.   My mouth is dry or I have very sticky saliva, which often is easier to spit than swallow. I carry a spittoon and water with me wherever I go.  Chemo is coming this Friday.

Mentally and physically and vigor-wise, I am totally my usual self. 

Long version:

I have now had 12 radiation treatments (23 to go) and one chemo.  Friday is my next chemo.

The main effect of the chemo—beyond the problem with nauseousness, which was well controlled with zofran—was acid reflux.  I started taking prilosec to control it (which worked great), but also went into the full-on acid reflux prevention mode—raised our bed on the head end 4”, sleeping on my left side, eliminated all foods that tend to make it worse, started drinking tinctures of some plants associated with healing of the acid reflux (licorice root and slippery elm), etc. I will be more on top it for the second round of chemo since I know it’s coming…

It’s fascinating on some levels experiencing the effects of the radiation. The first thing that came was dry mouth/ sticky saliva due to the salivary glands being in the path to wipe out the tumor.  This happens to everyone with this treatment and the effects started after about a week.  For the first few days, I found the dry mouth portion very uncomfortable, but I have now settled into it being the “new normal” and it isn’t really an issue at this point (but I understand it can get worse).  I always carry water now.  And, because it is easier to spit than swallow, a spittoon.

Somewhere in the middle of the second week, my mouth became sore. Specifically, on the right side and under my tongue.  I take the “Stanford mouthwash” three times a day, which is a combination of tetracycline, nystatin, hydrocortisone, chlorpheniramine (antibiotic, antifungal, steroid, antihistamine).  I also gargle several times a day with  baking soda/salt/water.  I just added aloe vera in liquid form. All these things either prevent or ease the discomfort of the general tender mouth plus specific mouth sores or other problems (such as thrush).  But, every day the mouth gets worse, in any case.  I can only assume it would be much worse if I didn’t do these things.

So far, I haven’t had much pain as I have been carefully managing my food and drink.  For those who do 1-10 scales, I have had a background 1-3 for the last several days which is possible with the help of ibuprofen.   However, on two occasions, I have eaten something that has irritated my mouth, and my pain quickly hit 9. So, on my agenda is getting some heavier-duty pain pills ‘cause 9 is really not good.

Since the treatment began, I haven’t had any coffee or hard liquor. I have avoided red wine though I couldn’t resist a few sips of the Merry Edwards that Sandy brought when we went out to dinner on Friday. (Thanks, Sandy...even if I didn't get to really enjoy it.)  I did drank one full glass of white wine at a wonderful dinner that our friend Lynne cooked.  It went down ok but sucked my mouth dry.  Anyway, no more wine or Jim or coffee, former staples.  And, I don’t miss them, which is somewhat surprising to me. 

I can no longer eat bananas, and that bothers me.  I love my morning banana.  And, I assumed it would be something I could eat since it is so soft.  But, it has something in it that stings my mouth. Damn!  The good news is that I can eat my favorite food: potato. It's a great relief that it isn’t on the, now, very long list of things I can’t eat.  What I can eat:  mushy or soft things that aren’t spicy, acidic or otherwise a problem.  This morning, I had a scrambled eggs, mashed potatoes, rice milk and butter combo.  (I am severely limiting dairy but the reasons for that will be in a later blog.)  For lunch, a fruit smoothie and some noodles smothered in olive oil. Tonight, rice and beans.

The thing I love most right now is watermelon juice.  It causes no pain and tastes great.  A nice way to hydrate (along with my multiple glasses of water per day).

Speaking of taste, I still have it but it’s wonky.  For instance, I ate my noodles with some sugar, as it tastes like salt.  Salt doesn’t taste like much.

So, in sum, everything is ok now.  But, the near future is a bit on the scary side…That said—I heard you, Val!—I am going to be fully recovered and back to my old self as fast as any throat cancer patient can be.  So, yeah, it will be bad for a while but I will come roaring back.  On that you can depend.