Thursday, October 31 was a wonderful, lengthy appointment with my oncologist. We discussed a LOT of things but what stuck out the most, and then my trial nurse repeated after he left was that I am currently “phenomenal.” This is somewhat paraphrases, but essentially my oncologist told me, “Two years ago, things weren’t looking too good for you and the median life expectancy at that point is 7 months (thankfully he didn’t mention that then!) but today you are doing phenomenally and I expect you to be my patient for a long long time.”
The next focus and goal for my treatment is continuing to step down the steroids and get back to infusions of the trial drug toward the end of November. In the meantime, I skipped a second infusion #10 because the trial drug would ramp up my immune system and the purpose of the steroid treatment is to calm down my immune overreaction in my brain (see auto immune meningitis post.) We also discussed a variety of options I have if I cannot successfully get off the steroid and have to leave the trial, but for now things look really great that I will be off steroids and back on anti-pd1 at the end of November. Happy birthday to me! I am honestly SO excited to get back to it! I was the first appointment of the day and it felt great to walk out of that building with good news.
Danny and I then had a lunch date and went paint color choosing for the outside of the house. I think we’ve decided so now we just need to write the check. Ugh! Our little house is going to look so nice, though!
I am in a wonderful group on Facebook made up of moms from the kids’ school. There was discussion about when the annual costume parade would be so I asked if someone would be willing to cheer as my kids passed and snap some photos because I knew I’d be at this appointment and miss. The kids came home full of excitement and both mentioned that a couple of the moms took pictures of them. I think they felt like celebrities! So sweet and such a blessing for my heart to know my kids were loved on after both expressed disappointment that I couldn’t attend their class parties. It’s tough to ask things like this sometimes because I worry that I might come across a) as an attention whore who is bringing up the cancer thing AGAIN or b) the conversation killer who is bringing up cancer again ruins the conversation about the times of parties and parades. I don’t mean to do either and my hope is that my friends know me well enough to keep moving in conversation and planning (while also doing what bossy pants me requested, of course!)
Danny and the kids carved pumpkins that night and went trick or treating. I was pretty tired and ended up having a focal seizure. I wasn’t on a therapeutic dose of anti-seizure meds, so I knew this wa s a risk. I was reading and all of the sudden the words turned to greek letters. I had no idea what they said. I was aware enough to call Danny over and verbally describe to him what was happening. It was odd but intriguing. Put a bit of a damper on the Halloween celebrations, but I think I will just up my seizure meds to a therapeutic dose and be fine. Call in to my neurologist and waiting for a call back.