September 21, 2018
I had an appointment with a neurosurgeon at 7:15 am this morning. The scheduling was more for him than me because he’ll be away for the next week. That gives me enough time to do all the pre-surgery planning that I need to do and get to all the pre-surgical appointments as well plus arrange for people to be here with me for a couple of weeks after surgery.
He showed me the MRI. My lesions are pretty scary looking. The 4 cm tumor is much huger than I imagined when I saw it on the screen. He says he doesn’t normally do multiples, but in this case he’s considering it depending on how well I recover after removing the bigger one in my parietal lobe. That’s good news and scary at the same time.
The surgery will be done a week from Monday, on October 1st. This is fast. Really fast. Actually kind of scary fast. I know they need to act quickly to get me on the road to recovery and prevent any further damage to my vision, but wow. Not that I want these things growing any more than they already have, but this is a little overwhelming even for me.
I’m being scheduled for a Visual Fields Test to see where the deficits are showing up and how badly they’re affecting my ability to see. Both the parietal and occipital lobes control/affect vision, particularly spatial vision. After that, there will be a separate pre-anesthesia consult, a surgical clearance from a PCP. There will be another MRI the morning of surgery after putting some special markers called fiducials on my head. This MRI will give the surgeon a 3D map of my head and brain so he knows where he is while removing the tumor.
The Neurosurgeon said that I should be functioning normally and I should be able to go home within a day or two of the surgery. My restrictions will be that I can’t bend over, lift more than 10- 15 pounds, hold my breath or strain doing anything, sleep with my head above my heart at about 30 degrees, all for a month after surgery. I probably won’t be able to drive for a while, either. I feel lucky to live somewhere that there are ride sharing services available even though they will probably get somewhat expensive depending on how many appointments I have while I’m recovering.
Telling my family is going to suck. This is scary shit. Even for me this is big. I need to get a handle on what is happening, what the rest of the planning entails, what the surgery and recovery entail, and figure out what I need to be at home afterward. Logically, I’m safer here than I would be anywhere else. Because I’m blind as a bat, I learned early to count stairs and generally memorize where stuff is in the house – like how far it is between my bed and the bathroom in the dark, or how to get out in case there’s a fire. It’s always been a no-brainer for me.
Seeing as I won’t be able to bend over, I’ll need to keep a bunch of things on countertops that I wouldn’t normally leave there like pots and pans. I won’t be able to bend over to load/unload the dishwasher, so it’ll be top-rack stuff only and wash the few other things that I use. I’ll probably use a lot of paper plates rather than mess with the real ones. I’ll need to figure something out for laundry. Someone will have to come in and take the trash out for me. I’m sure there are other logistical things that need to be worked out that I’m not thinking about yet.
Right now, I plan to go back to work after a few days. I know that sounds crazy. When I had the lumpectomy, my restrictions had to do with lifting my arms and nothing more than 5 lbs. My laptop weighs half that, if even that much. About week 4 of my leave I realized that instead of messing around on social media and not doing anything useful, I could have been working instead. The Neurosurgeon says that I’ll be back to “normal” after a few days. I’m going to give it a shot and see how it goes. If I need to go on leave I will. Some of this decision has to do with what a pain it was last time to get off the disability leave. It’s really just that it takes a while for the system to recognize that you’re back. So, if I feel wonky or am just not up to it, I can always still take the disability leave.
The hard part is that I just had family and a friend here for my lumpectomy in May and it’s going to be a lot to ask for any of them to come back so soon. I am really lucky to have some great neighbors who’ve helped out with cleaning and errands in the past that I’m hoping I can rely on again. My fear is asking too much of them an burning them out. Seeing as I’m assuming that I won’t be able to drive for a while, I’m glad that I live somewhere that I can get groceries and food delivered if I want or need that, so there’s some relief there, too. Regardless of the conveniences of living in a metro area, this all still sucks. In a very big way. My family is going to freak no matter what. I’m trying to be prepared for this, and I don’t think there’s going to be a way to be prepared enough.
As when I found the breast tumor, I’m glad we found this when we did. While they’re bigger than any of us expected, they’re still treatable. This puts me in really shitty statistically territory, but I’m trying really hard to stay positive about getting past this and there being a bigger hammer treatment that stops this disease in its tracks for the same 10-15 years other people get. Something has to work, right?