Tomorrow I’ll be having my third and final cranioplasty. I’ve decided that this is going to be my last surgery no matter what I look like when it is over. I’ll consider it if my health is in danger, but I’m pretty tired of having my skull cut open and spending the next two months recuperating.
I’m having my titanium mesh removed and a preformed acrylic mold put in its place over my temple and orbital area where they had to remove my skull while taking out my brain tumor in January.
The craziest thing about the date of this surgery is that it is 361 days after I had the MRI that found my meningioma. October 30th of last year. About a week ago I saw a post in my facebook memories saying, ”Okay, whoever has the voodoo doll of me with the pin in the eye can take it out now.” Such a simpler time, when I thought I just had crazy migraines that were changing.
November 4th I got a phone call from my Neurologist on my way home from work. I didn’t answer because I was driving and he left a voicemail that he would call me back in a bit. I still didn’t think it was anything dire. My imagination wasn’t that big. He called about an hour later and told me that they found the cause of my pain on the MRI and it was a brain tumor. I’ve spoken to people since who were very upset about getting the news over the phone, but my Neurologist was very kind. He explained everything. We discussed different Neurosurgeons and chose one. He told me to come in anytime if I needed to and they would fit me in.
So now, a year later I have had one cranioplasty to remove the tumor (benign), one cranioplasty to fix a CSF leak, a staph infection which led to a month or so of home infusions of antibiotics (kind of like an IV at home through a port in my arm), six weeks of radiation where the steroids caused Cushing’s Syndrome (moon face, acne, and extremely painful joints) and now full circle to another cranioplasty.
I’m not really scared this time. By now it’s kind of old hat. Speaking of, I have several year-old hats that my mother bought me last year because she assumed I would end up like her after chemo from her breast cancer. I have not worn any of them. I do have two bald patches from the radiation, but my hair covers them pretty well.
So, instead of being scared, I have the expected frustration of having to go through this again, but the biggest thing I feel is relief that I will have time to rest again. It hurts after brain surgery, of course, but you get to give up control. I’m a control freak, or at least I was. When you have brain surgery, you aren’t responsible for anything. You can’t be responsible for anything, so you get to make other people responsible. I was the bill payer, the grocery shopper, the cook, the cleaner, even when my husband was out of work. Not anymore. We have gone back to sharing duties, but for the next 6-8 weeks, he’s going to be doing all the things I used to do on my own after I got home from work.
I have run out of inspirational things to say to people, but they continue to call me brave and strong. At this point it’s starting to feel like a long con, like I’ve become a professional patient. Maybe I’ve just grown used to it and things that would have been super shitty to me last year just feel like life now and don’t bother me. I don’t have one of those, “lucky to be alive,” dispositions. I’m not praising the lord for every breath. I just have had so much time to look at things while being driven everywhere, to think about things while sitting outside with my coffee at 3 in the morning when my steroids wake me up. Life is just an experience now and I’ve given up the feeling of responsibility for controlling everything in my life.
And now, I leave you with the inspiration for this post
Man, I wish I could imbed that video.