The Gong
I've finished the initial 7 weeks of concurrent chemo and radiation treatments! I now have at least 4 weeks of rest and recovery before I start the next phase of treatment, if any. While the treatments are done, I won't have any test results or scans for a few weeks, so I'll just have to assume that the protocol worked and things went according to plan. Besides knowing that the drugs took a toll on my body, there are other encouraging signs. I've been fortunate to have a fantastic support network, and I appreciate all the emails, texts and messages you've sent.
The last day of treatment didn't go exactly as I had planned. On Tuesdays, my normal routine is to get radiation at 11am, then do the blood draw / chemo infusion in the afternoon. However, the Elekta Infinity machine needed some service, so my radiation treatment got pushed back until 4:45pm. In hindsight, that worked out well, since when I walked out of there, I knew I was done.
Once again, I did not get a chemo infusion. I think my blood counts were on the edge, but the ringing in my right ear persists, so they did not want to continue Cisplatin with that side effect. The good news is that the fullness is subsiding, so the hearing difference between the right and left ear is getting less. Hopefully that is a sign that the tumor has shrank and the fluid that caused that fullness is draining. I have a hearing test later this week to see if that is the case. It feels like there is something moving in my left ear, so hopefully that's nothing serious. With no chemo infusion, I took the opportunity to get more fluids and take a nap before radiation.
There are many times when this is all I want to do
The last radiation session went just like normal. Aiday came back with me to see Treatment Room C, where I've been spending so much time. I was fitted with my mask for the last time; the therapists made some small adjustments; I closed my eyes and listened to three songs; and then they came in unclamp the mask. I was done! This time, however, the mask is coming home. (I'm still undecided for the best use, though.)
Last time under the mask for treatment purposes
After that, I made a follow up appointment at the nurses' station, and they said I need to bang the gong. This is a tradition at Northwestern when patients finish their treatments. I have to admit that I hadn't heard it before in the waiting room, so this was a little bit of a surprise to me. I think it was also a little bit of a surprise to the nurses that I actually have experience playing a gong (thanks to high school band percussion section). I gave it three really solid hits. Unfortunately, it so late in the day that there were hardly any people there to appreciate my virtuosity.
Throughout the day, I was encouraged by all the positive comments from my care team. Without prompting, they said I look really well, especially at the end of treatment. My skin is in excellent shape, I can still speak well enough, and my muscles haven't atrophied too much. At least my BMI is now in the "Normal" vs. "Overweight" range - for some reason it's included in some of the hospital visit summaries.
From the outside, things are normal. However, the issues I mentioned previously will be around for at least a few more weeks. The biggest challenge continues to be managing my mucositis and dry mouth. I feel like I have to have my medicines, sparkling water, and a spittoon nearby. At this point, I'm a little wary of any excursions longer than 1-2 hours. It alternates between no saliva and really thick, frothy saliva. This is actually now starting to affect my sleep, as I'm getting up every 1-2 hours to rinse and spit. It may be actually easier to take naps throughout the day than to try to get a continuous night's sleep. I'd still love to work out, but with the dry mouth and my discomfort in drinking water (thicker liquids are easier), I can't do anything too strenuous.
The home hydration has been really helpful. While I now have a needle attached to my port at all times and I can't sleep on my front (as I normally do), staying hydrated has improved a lot of things, including constipation.
Home hydration
As for food, it's a shame and feels wasteful that I have to throw out a lot of stuff. At least I'll have a fresh start fridge. For example, I met up with friends for Jeni's ice cream. I tried to order what I thought was an easy-to-eat and relatively bland flavor. It turns out that the watermelon frozen yogurt was incredibly tart. Half a spoonful was all I could take and the rest just melted before being trashed. Sadly, I think it's going to continue like that for a while as I have to try to see what I can eat and what I can't. I even had a dream where I could eat piece of melon. I doubt that would have been a "dream" a few months ago. It is challenging to have hunger pangs but knowing there is no real way to satisfy them.
At the very least, I have started cooking again. Not so much for me, but for Aiday, since she's not on the Ensure Plus / Benecalorie diet. The italian sausage tomato sauce and the beef and broccoli stir fry seemed to meet her approval.
I'm hoping to post more as my energy improves, and I have more developments to report. This may include the return of my razor, as this facial hair experiment will mercifully conclude shortly. I'm also hoping to include more of what I'll be eating and doing going forward. It's been a long summer inside the condo - I want to get outside at least a little bit.