It’s hard to know what to say right now besides “Ouch.” The esophagitis is suddenly severe and it hurts a lot to swallow. Sometimes it hurts a lot even without swallowing (like now). It feels like there’s a river of acid running down the center of my chest, and a knot of pure pain at the center of my breast bone. At times the pain is so bad it makes me start shaking and crying.
Eating and drinking have become true challenges, especially eating. I get IV hydration three days a week, which compensates for how much less I’m drinking, but there’s no equivalent for eating. I got something called Skandishake which is an extremely high calorie shake, so if I can get down one of those plus a bit more, I’m at 600 calories for the day. That’s about the best I’ve been able to do for around a week now. The shakes are made of all sorts of things I really really don’t want to eat (like corn syrup), but at this point I have to get calories in at any cost or I’ll end up in the hospital.
I’ve become the slowest eater ever. I have to wait for the food to get closer to room temperature (whether it’s hot or cold), then I eat in very small bites. On a good day, I can eat 2-3 bites before the pain kicks in and stops me in my tracks for around 5 minutes. This morning, it took almost an hour to eat a bowl of oatmeal.
Dr. Lee said it’s “classic” esophagitis: burns and irritation in my esophagus from the radiation.
He raised the dosage I can take of oxycodone, which sometimes helps and sometimes doesn’t but always puts me to sleep (especially in combination with the anti-nausea drugs). Most of my time right now is spent either dozing, napping, sleeping or sitting in my recliner saying, “Ow.” And I thought I couldn’t really focus well before!
Because it’s so severe, Dr. Lee said we may decide next week to cut the radiation treatments short by three, giving me a total of 60 Gray of radiation rather than 66. My heart immediately said yes. My brain immediately said no.
The pain is extreme and I’m miserable (understatement). I also very much want a cure for this, and wiping it out with chemoradiation is my shot at that cure. It feels like a deal with the devil–“Compromise and I can stop the pain.” The truth is that cutting the treatments short won’t stop the pain right away… but each treatment adds to the amount of burn and irritation so eliminating treatments helps me switch from deepening burns to healing that much sooner.
I feel guilty even considering it. I worry that if something goes wrong down the line, I’ll blame myself for missing those three treatments. It’s an irrational worry because I missed one chemo and two radiations last time, the treatments still worked, and I have no regrets. I can say with confidence that the treatments worked because I was NED (no evidence of disease) for two years and this is a fast-growing cancer–there’s no way the mass in my lung is more than 6 months old (if that) at its growth rate.
My final decision? I need to trust Dr. Lee’s judgment. He said “60 Gray is a very reasonable dose.” He sees the mass every day in the pre-treatment scan, and he just got a very clear view of it a little over a week ago when they did CT planning with contrast. If he recommends stopping at 60 Gray, I’m going to trust him because esophagus damage from radiation can sometimes cause permanent side effects. He has the knowledge and is balancing more factors than I am.
If we decide to cut the treatments short, it would mean the last one is this Wednesday. My last chemo is Monday (assuming my white blood cell counts cooperate) so there is a good chance I’ll be done with treatments before the holidays, which I admit sounds like the perfect Christmas present.