The Eyes Have it

I know I owe you guys an update, but quarantine is kind of a drag. I have an Ativan prescription that I can take as needed and if I'm being honest I've needed it more lately. The threat of cancer killing me was one thing. The chance of catching and dying of COVID-19 while fighting cancer is a whole other thing. Especially when so many people are either denying it's a thing and/or trying to reopen things too soon and cause a spike. **deep breaths**

So I've been avoiding updating you about my existenital dread because I know everyone has plenty of their own right now. But I don't want to worry anyone, so here's the latest...

Sometime around March 20th or so, I accidentally poked myself in the eye. I put over-the-counter eyedrops (Systane Ultra) in my eyes probably 50+ times a day. My GvH dries out my eyes and causes irritation, pain, and occasionally vision issues. And the drops cause gunk to build up on my eyelashes and eyelids, which is also an irritant. So I fuss at my eyes all the time... for like the last eight years. Poking myself in the eye was new, but not shocking considering how much I mess with them. But boy did it turn in to a whole thing.

It turns out my poke created an abrasion and it eventually got bad enough that I couldn't keep my eye open or tolerate any light. So I had to go see an eye doctor. During quarantine. Oof. I have since seen three eye doctors a total of ten times. At one point I had abrasions in both eyes (the second one due solely to dryness). I've been on five different prescription eye drops, three different over-the-counter drops, had multiple bandage contacts, switched to preservative-free Systane Ultra vials, and I have an appointment to get serum eye drops which are made from my literal blood. It's been a total pain, but the eye doctors are amazing and they're working to try to improve my eye GvH, so that's wonderful.

So now my eye abrasions are finally all healed. I get to stop the antibiotic eyedrop and reduce the frequency of the steroid drop. I'm going to try a medicine called Xiidra, which will hopefully help with my eye dryness. We may also try puntal plugs, which plug your tear ducts. At this point I'm willing to try just about anything, but also happy to have two weeks until my next eye appointment.

My last chemo treatment went okay. Weirdly, I had a reaction to my pre-meds, which are meant to keep me from having a reaction to my chemo.

One of my veins had a hard, swollen area AND I had a few hives!

But we switched the location of my IV and things went smoothly after that. I felt drained for about a week afterwards and spent a lot of time just sitting in our oversized comfy chair. My fingernails have gotten brittle and on a couple of them you can see lines that I'm certain correspond to chemo treatments. My other side effects have stayed about the same. No fun, but we're getting through.

It turns out, I only have one round of this chemo left to go. After that we'll wait a few weeks and then have a PET scan to see how things look. Hopefully the cancer has shrunk even further or disappeared altogether. Dr. Essell is hopeful that these treatments might be enough to keep the cancer under control for a year or two. That's our best case scenario. After that we'll have to look at other options.

At my last appointment Dr. Essell mentioned that at a recent conference he happened to have the ear of the Hodgkin's Lymphoma specialist at the Mayo Clinic. This guy is probably one of the world's top experts on Hodgkin's. And given this opportunity, Dr. Essell asked this expert amout MY case! The expert believes that even with my GvH, I may still be a candidate for immunotherapy options. So that's probably our plan for whenever the cancer comes back.

It's so frustrating to know that this chemo won't keep the cancer away forever. When you go through so much nastiness and worry, you want the payoff to be bigger. But after those really awful PET scans, I'm incredibly lucky we found something that has worked so well.