Week One Done

Just back from Chemo Day 2 (and Radiation morning 6) and all is well, pretty much. 

It’s definitely a “slow build” in terms of symptoms. My throat is a little more sore every day. Last night I briefly had trouble swallowing saliva – it didn’t hurt, but I just couldn’t work the muscles around “the blubber” as I’ve come to call the tonsil tumor. And I have persistent brain fog. I’m calling it “radiation brain” though Dr Kelly was quick to point out that “We are not radiating your brain.”  Derp, I know that, doc. Just saying I’m having brain fog from all the treatments. 

I’m a little more forgetful, and have trouble finding words sometimes. But I’m still working, for this week at least, and half of the next, then down time starts for real. No real pain to speak of, knock wood. But we’ve got a long way to go and I know it’s coming. 

Yesterday the doc asked if I was experiencing hiccups and I said no. But by the next day, bouts of hiccups started coming in waves, lasting five minutes, and then stopping. No idea what causes that, or if it’s any cause for concern.

People keep asking what music I get to listen to in radiation. But it’s only 10 minutes, so I just listen to what they have on, which is always bad 80s pop. I just sort of indulge in memories of high school dances. But today the tech asked if I had requests and I blurted out “Sly & The Family Stone!” He put on “Everyday People” and I wanted to dance with my body, but the mask held my head still, so it wasn’t much of a dance. I’ll start arriving with a request or two in mind.

My mental and sometimes physical energy is low, though I’m still walking three miles daily in our hills to keep the exercise up, although that creates a calorie burn I have to make up for. I’m not willing to give it up though, and doctors agree that it’s definitely worth it and I’ll benefit in the long run.

I’d say I’ve lost 50-70% of my taste sensation, and have been dealing with bouts of moderate nausea. When you’re queasy and food tastes like cardboard, it gets so much harder to eat, but at the same time my system is going “Hypermetabolic” which is why I have the high calorie goal of 2500-2900 calories/day. That’s a real challenge, but it’s also permission. Cream, butter, stock, cheese, peanut butter, ice cream, protein powder in everything. Take every opportunity to crank the calories. Bottom line is that if I lose 10% of body weight I have to get a feeding tube installed in my stomach and Amy will have to squirt bottles of Ensure directly into it. Let’s not go there, right?

I love smoothies the most – they go down easy and the sweet fruits are the most taste-able. Best way to get calories down quickly. Also apples with peanut butter.

I have three different anti-nausea meds and it’s been a bit tricky to sort out what to take when. One I can’t take for two days after chemo because they were already in the IV  drip. One is the most effective, but also causes the most constipation and it’s crucial to keep the flow flowing (have to rid of all this stuff in my system, and to not feel miserable). So I’ve learned to love prune juice, am taking Senna pills, and Purelax. If I take the strong med, I have to do more of those. And one “any time” med that’s fast acting but less powerful.

I’m sleeping more than I have in many years – 8 hours/night, plus a 1 hr nap after lunch most days). Going to bed at 11 feels just weird to me. I know it’s normal for most people but I’ve been a night owl as long as I can remember.

I’m not drinking at all now – stopped two days before radiation started.  Unfortunately, any boost I might have gotten from stopping is overshadowed by the other symptoms, but I know it helps, and having alcohol in my system is the last thing I’d want to add to this crazy mix of treatments and their symptoms.

Big picture: We’re right where we expect to be after week 1. Nothing unexpected. New challenges, but all do-able.