My radiation oncologist called this morning. Today is 4 weeks since my last treatment so he was calling to see how I am feeling and where I’m at since treatment. He’s very kind and just awkward enough that I know he’s dedicated a lot of his life to science and medicine. I feel very lucky to have the people I do on my “case” or “on his team”, but I guess if you gotta have this ridiculous, rare, inoperable brain tumor, the best case scenario is to have an interesting case that attracts the best doctors and researchers.
As I’ve mentioned in previous blogs, meningiomas are only diagnosed in about 6500 people in America per year (give or take), and they are typically benign, slow growing tumors that are actually pretty treatable. IF your tumor follows the rules and behaves like the benign, slow growing tumor it’s supposed to be on the covering of the brain. Mine however, ….kind of a pain in the ass as far as meningiomas go. It appears to be benign, but that’s based on the 3 MRIs and the 2 CT scans I’ve had this year because the damn thing is technically on the covering on my brain, but it’s way down underneath my brain near the brain stem. Basically my tumor is hidden as deep as it can be, giving the finger to the radiologists and doctors because there’s no way they can go in after it.
It also does not appear to be as slow growing as it’s supposed to be (based on the fact it wasn’t there 3 years ago), and as far as treatment goes, I only had one real option and that was the crazy radiation CyberKnife lasers. So my kind of brain tumors? Maybe 10 cases a year. (This being an anomaly thing is getting to be a pain. I’m over it.)
So I survived some pretty insane levels of radiation in relatively short order and I told him that I was doing alright. He asked if I was better since we started treatment. I considered the term. If “better”, “worse”, or “the same” were my options for a response I’d have to go with “better”. I told him I have less headaches now. He sounded pleased and asked if my follow ups had been set up yet. “Nope, how does this work?”. He said he’d set up appointments to see him, my neurosurgeon, and to have a new brain MRI all in the same day in about 2 months. I really love that everyone at Georgetown seems to get that living 2 hours away makes things a little tougher so they try to make it all happen together.
So how am I doing 4 weeks later? I do have less headaches, but the occasional pain spikes are still pretty intense. I still have spasms but they seem to have tapered back down into twitchy instead of feeling like someone was shaking me. I forget things and still have absence seizures and one of the most common things out of my mouth these days is “I’d really like my brain back”. But I am, for the most part, functional. The nausea during treatment was not fun, but that is tapering off now too.
I’m surviving. I’m still writing as much as I can. Both to share experiences and hope with present and future patients, and as a tool to get myself through this. I actually reached out this week to someone my hubs used to work with who is now is the hospital with complications from a different type of brain tumor. I think it’s important for tumor patients to connect and support each other. It can feel overwhelming as you make your way through something so big and hard, and often we feel very alone. I just love the thought that being sick gets you so much attention. (/sarcasm off. Anyone that has faced a tough health issue knows the truth.The world keeps turning and we’re staring at the walls. I used to have “Flowers on the Walls” by Eric Heatherly stuck in my head when I was in the hospital.)
Emotionally the last couple of weeks have been tough. Now that the immediate crisis has passed, I’m working my way through the emotions that come with the diagnosis of a brain tumor, possibly one you’ll have for the rest of your life. I also have the reality that this kind of tumor comes with an increased risk of breast, ovarian, uterine, and cervical cancers. I was able to hang out in disbelief for a while, but now I’m finding my way through everything else that comes before acceptance.
It’s a day by day thing. So if you ask me how I am, today I might say “I’m doing okay…..”.