By a mile, this 'complication' was by far the worst as far as recovery and as far as life threatening-ness. (Like that word?!) Remember, the original meningioma (brain tumor) was there for probably years, if not decades. The fluid that built up 6 weeks after surgery, while not covering as large an area as the tumor, built up quickly. And kicked my ass. The whole story around it was more dramatic, and the recovery from the surgery was much more intense than the original craniotomy, if you can believe that. There's nothing that compares to this one. Visit the links above, or the links from April 2009 posts for a trip down memory lane with me.
Proton beam radiation, while in theory has less side effects than other forms of radiation, can still kick your ass. I learned the hard way. La-di-da, all was going well. Then right around mid June (around treatment 28-ish)...BAM. And it's still kicking my ass.
Decadron sucks.
4. The 12 Days Before the Craniotomy (Hey, isn't that song?!)
The anticipation. The medicine side effects. The calls from well wishers who sounded like I was off to a death march instead of getting a surgery that I really did need and really wasn't dreading. It was just a weird time.
Bet you thought this would be up earlier on the list. It's not, probably because I was so focused and prepared for this, unlike anything else that's come up over the last 6 months. As far as pain and recovery and fatigue: I wasn't really in that much pain, because I couldn't feel anything for at least two weeks after cause of all the anesthesia. And I got to sleep for as much as I wanted. And I didn't have to clean out the kitty litter. And I didn't have to cook or clean. And I was kind of in a cool fog, like a dream, most of the time. That was kinda cool.
Seizures right after the craniotomy, right after the hematoma and lingering through radiation treatments. They are being addressed, but any way you slice it, seizures suck.
Going into Dr. Shapiro's office to get my staples out I thought I was home free. Then he drops the bombshell on me - Grade II (atypical) meningioma. It should have been a happy day, instead I was totally blindsided. Now I had to deal with phrases like 'radiation oncologist'. Ick.
I actually could move this up as a 3 way tie. It was because I had the marker surgery 3 weeks after having the hematoma surgery. And 2 surgeries in a month is hard on the old bod. If I had this surgery done any other time, it probably would have been much easier. I had lots of swelling and pain that I wasn't anticipating. It's different for everyone, but for me, it really was painful.
See post about my other Decadron experience towards the end of radiation. And I'm still continuing to struggle with radiation effects after radiation is done. It's a lot harder than I thought it would be. I definitely have good days (like today) and days where it's hard to think and be around people and I generally don't feel well and am very fatigued. This will get better, but it will take time.
Leading up to the diagnosis and final confirmation of the meningioma diagnosis was an ordeal in itself. My husband is the best in the world.
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What a story! amazing! well, I had to know how you're doing and googling around got me to proton therapy site with your pictures on it ....with the most adorable angel! congratulations! You guys deserve the best!
ReplyDeleteBest wishes,
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