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01 July 2012


After my last post, I called the neuro surgeon's office to schedule a follow-up appointment now that we know the tumor is not affecting my optic nerve. The scheduler was super pleasant, a far cry from what I'd become accustomed to from this staff, and while trying to figure out what day or time might be available that would work for me, she realized that perhaps I didn't need to come in at all. She said that she would have my chart pulled and the doctor would review the report and maybe he could call me to discuss things rather than me coming in. I was pleased and hung up and waited for someone to call. And waited. And waited.

Exactly a week later I was at work when my cell phone rang. It was an unfamiliar number but I answered it anyway. It was my surgeon. I quickly scrambled away from my desk to the break room in the off chance that the news wasn't good or that I couldn't keep what I was saying from revealing things to co-workers nearby.

He went over the neuro report that showed there was no impact on my optic nerve from the tumor and then he went through the three options for these sort of tumors again -- radiation, surgery, or wait and see. He explained, again, that radiation does not shrink these types of tumors, it only stops them from growing. Because mine is so large, it's off the table for right now. Surgery is an option but because of the size and location, the surgeon wouldn't be able to remove it all (it's near some pretty important things besides my optic nerve). After he removes what he can, we'd monitor the size through MRI scans and if what was left started to grow again, then maybe radiation would be an option.

Finally, the wait and see. We know that the tumor has to come out, or mostly come out, at some point, but given that I am 31 and the fact that I'm likely to live another 50 years (his words), waiting might be the best for now. I have another MRI planned for October, six months after the first one, and we'll go from there. If there's no change, then maybe we wait a year before another scan. 

I am not entirely keen on leaving this thing in my head, untreated so to speak, for a very long time but I understand that pushing it out a bit is probably for the best. We don't know what the tumor looked like a year ago, or five years ago, or even ten years ago when some of the small symptoms started but no doctor ever thought anything of them. It's possible that it could be in a dormant phase right now and not growing. And while the loudest voice in my head is screaming, "GET. IT. OUT." I understand his concern about needing a second surgery at some point in my lifetime. 

I am still pretty terrified about developing double vision or losing some of my peripheral vision but those are things that the surgery can cause, too. Things that might not resolve themselves in the recovery period afterwards. I know that double vision can be corrected and the important thing would be preserving my eyesight before I lose it completely, but I have always been a contacts wearer and having to switch to glasses that correct it makes me incredibly self-conscious. Or, I could end up having eye surgery to correct it. Wonder if they'd just completely fix both eyes to where I don't need any corrective lenses. (Ah, the vanity never ceases to amaze me.)

The surgical procedure itself scares me - an incision just below my hairline on my forehead, piece of skull removed, tumor removed as much as possible, skull replaced, week in the hospital, four to six weeks recovering at home - so delaying it, even just for a little bit, relaxes some of the anxiety. I have this contract job that, if all goes well, could become permanent towards the end of the year or beginning of next year. And then, after a year of being honest-to-God employed again, I'd be protected under FMLA for the surgery. It's not the most important thing but it's something that bounces around my thoughts. 

We are so grateful that so many people have been concerned about all of this and to be honest, I was pretty scared. I still am, but right now I just have to keep putting one foot in front of the other towards the MRI scan in October. 

1 comment:

  1. Whoa. I am sorry to learn that you are facing this. You are so young. Gah. You sound very put-together about it all. I am impressed.