Starting Countdown
Wishing everyone a happy and safe Fourth of July. It's a day without treatment for me, so I wanted to provide an update. First of all, I can starting down the number of treatments I have left, which is now at 9 radiation sessions and possibly 1-2 chemo infusions. It's been a mixed week since my last update, but overall things are still manageable. Some days I feel pretty normal; other days I really struggle with appetite, eating and low energy.
The radiation machine (Elekta Infinity) - the system moves around me while I lay still on the table under the mask. I've been there 26 times, with only 9 more to go
Trying to maintain weight is the biggest challenge right now, and I'm on the losing side of it. I'm at an inflection point between "you look great" and "you need to eat." I've lost about 14 lbs at this point, and belts are a necessity these days. Eating continues to be a struggle, as there are several days where I don't have any desire to eat lunch or dinner. A breakfast of oatmeal and half a papaya is all that I'm able to do for some days. At this point, I just need to desire to eat something - doesn't even need to be tasty. The fridge is loaded with leftover soups (corn chowder, cream of mushroom and chicken, chicken with vegetables, etc.) that I can't finish off.
My medical oncologist said that things are pretty normal at this stage of treatment. He said the weight loss was to be expected ("not at all concerned") and same with the low energy. However, he decided not to give me another Cisplatin infusion, as the ringing in my right ear continues. Hopefully this is a temporary, and not permanent, side effect of the chemo. I've already had 5 infusions, so I think any more at this point is a bonus.
On the positive side, most of Thu-Sat was pretty normal. I had pretty close to normal energy and was able to keep a routine. For example, I did a 60 minute yoga class on Friday, which the doctor termed "ambitious." He was impressed that I did it, and I didn't even tell him that I successfully did crow and handstand poses. They took a little more energy than usual (even if I weigh less than before), but it felt nice to be able to do a class like normal. Friday night we went to Birch Road Cellars to do a wine event. I was not able to sample the "odd" wines, but I did get to enjoy the company.
These Spanish "wines" need to be agitated and look like a cross between a bowling ball and a lava lamp
Another positive is that the pain in my mouth and throat is a little better this week. This is probably due in part because I started taking more of the prescribed medications. I had managed pretty well the first few weeks with only taking the anti-nausea medication. However, I stepped it up this week with the corticosteroid, the prescription pain killer (vs. Alleve) and more mouth rinses - both the lidocaine rise and the Gelclair. It's a bit of a process to keep track of and make sure to take each of the medications in proper sequence before going to bed. They seem to be helping, so I'll continue to keep on top of the medications before the side effects crop up.
My medications
On the more challenging side, the cumulative effect of the treatments is starting to take its toll. There are times when the dry mouth gets worse and talking becomes painful. I need to have a water nearby to make sure I can have a conversation. My energy is now hard to predict as well. On Sunday, after meeting up with friends for brunch (hardly touched my omelette), I could barely stay awake that afternoon. Granted, Croatia-Denmark was not the most exciting game, but I napped throughout most of the match, only waking up to catch the penalty kicks. I'm not sure if the impact of the medications wore off and caused me to get tired or if this is what to expect going forward. I was fully awake during the Belgium-Japan game on Monday, which had a spectacular second half.
For those curious about my skin and facial hair, some more mixed results. Facial skin does look pretty good overall, but my neck is feeling the effects. It's much darker than my face and the skin is starting to peel. Keeping it moisturized (combination of Miaderm, Aquaphor, Cortizone) is key to staying comfortable. It's just starting to break. Interestingly there is asymmetry is my facial hair growth. There is modest growth on the left side of my face (where the neck skin is more irritated) while there is no growth on the right side. This is two weeks of not shaving.
