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.
01 July 2012
14 June 2012
Sheryl Crow Wants To Be Me
I don't have the mental clarity to compose anything of use right now so I'll cheat and post this instead. I know that I linked to a more technical definition of what a Meningioma is before, but this piece seems like it's written for the everyday reader. Note to self: follow-up with surgeon ASAP. "Just ignore it and pretend like everything is okay" is not the greatest plan of action.
More real updates soon, I promise. The new job is taking up a lot of realty in my head these days and I haven't quite been able to turn it off yet and turn everything else back on (also see: avoidance of calling doctor to schedule follow-up).
More real updates soon, I promise. The new job is taking up a lot of realty in my head these days and I haven't quite been able to turn it off yet and turn everything else back on (also see: avoidance of calling doctor to schedule follow-up).
05 June 2012
Quick Update
The appointment yesterday was not quite what I expected. He focused mainly on the optic nerve function but didn't do an eye exam, which means I still need one. The good news: He does not see any sign that the meningioma is affecting my optic nerve function. I don't know exactly what that means in terms of me making a decision about surgery, but it's a small victory in the story.
There is still the chance that the tumor will grow or start pressing on my optic nerve and causing double vision or lack of peripheral vision. Those side effects may or may not correct themselves on their own after having most of the tumor removed. The surgeon mentioned that double vision after the surgery is pretty likely and that it may or may not resolve itself in the four to six weeks of healing time at home post-surgery. There are glasses I could get for the double vision or another surgery. That's a lot of unknown and my type A personality is struggling a bit with it all. I was hoping we'd have a more clear picture of what needed to happen.
After leaving the doctor's office yesterday, I got a call about the contract to hire job I interviewed for last week. I start today. I tossed and turned after 3:30 this morning and I'm sure I'll be tired later but I'm excited to have something, finally (!!). The commute is short, the pay is where I need it to be. Life may not be perfect but it's nice to have something good happen while I try and figure out everything else.
There is still the chance that the tumor will grow or start pressing on my optic nerve and causing double vision or lack of peripheral vision. Those side effects may or may not correct themselves on their own after having most of the tumor removed. The surgeon mentioned that double vision after the surgery is pretty likely and that it may or may not resolve itself in the four to six weeks of healing time at home post-surgery. There are glasses I could get for the double vision or another surgery. That's a lot of unknown and my type A personality is struggling a bit with it all. I was hoping we'd have a more clear picture of what needed to happen.
After leaving the doctor's office yesterday, I got a call about the contract to hire job I interviewed for last week. I start today. I tossed and turned after 3:30 this morning and I'm sure I'll be tired later but I'm excited to have something, finally (!!). The commute is short, the pay is where I need it to be. Life may not be perfect but it's nice to have something good happen while I try and figure out everything else.
04 June 2012
Funk
I cannot begin to express how grateful I am for everyone's concern and offers to help. It means so much to us that everyone is ready and willing to help if we should need it.
I'm stuck in the funk of not knowing what comes next, of not knowing whether or not the surgery will be scheduled or delayed or ignored or made top priority. It's so frustrating.
Today I see the specialist to get the in-depth neuro eye exam. Last week I picked up a disk with my MRI images to take to the doctor today. I came home and put it in the computer. Huge mistake. There is no amount of preparing or rationalizing that made me capable of seeing those pictures. That's one big tumor in my head, folks. If I had photo editing software, I'd crop a picture and post it here. Maybe I can figure that out this week. Because I'm all about sharing the gasping horror with those that I love.
I'm waiting on a call about a contract job that I interviewed for on Friday. News this afternoon maybe. Not totally sure I want the job if it turns out I'm going to have to quit because who wants a new employee that's going to have to have major surgery and be out for over a month? That sounds horrible, of course I *want* the job...I just don't want the mess of having to leave it should this turn out the way that I fear.
Feeling like a big coward all the sudden. Where did I put that courage again?
I'm stuck in the funk of not knowing what comes next, of not knowing whether or not the surgery will be scheduled or delayed or ignored or made top priority. It's so frustrating.
Today I see the specialist to get the in-depth neuro eye exam. Last week I picked up a disk with my MRI images to take to the doctor today. I came home and put it in the computer. Huge mistake. There is no amount of preparing or rationalizing that made me capable of seeing those pictures. That's one big tumor in my head, folks. If I had photo editing software, I'd crop a picture and post it here. Maybe I can figure that out this week. Because I'm all about sharing the gasping horror with those that I love.
I'm waiting on a call about a contract job that I interviewed for on Friday. News this afternoon maybe. Not totally sure I want the job if it turns out I'm going to have to quit because who wants a new employee that's going to have to have major surgery and be out for over a month? That sounds horrible, of course I *want* the job...I just don't want the mess of having to leave it should this turn out the way that I fear.
Feeling like a big coward all the sudden. Where did I put that courage again?
29 May 2012
The Limon
I have been mentally composing this post for a month now and I still don't really know how to start or how much to explain. So, here goes.
There is a fairly large tumor in the lining of my brain called a Meningioma. They are, from what I've been assured by the neurosurgeon, mostly benign growths that often cause no issues and in some cases can be left alone. I am only having minor issues right now but it is large and I am still young and it will, over time, continue to grow.
I have an appointment scheduled for June 4th for a neuro-ophthalmology exam because the tumor is encroaching on my optic nerve and the neurosurgeon wants to know if it's affecting my eyesight. Once the exam is done, I'll meet with the surgeon again to determine whether or not to schedule surgery now or put it off for a bit.
Ultimately, it has to come out. It's bigger than a lime but smaller than a lemon, though not perfectly round-shaped, and it's near some very important things in my head. The surgery scares me, the recovery scares me, the fact that the surgeon says he probably can't remove all of it scares me.
It is mostly likely not cancer and that's fantastic. But it's still an awful lot to accept and process.
There is a fairly large tumor in the lining of my brain called a Meningioma. They are, from what I've been assured by the neurosurgeon, mostly benign growths that often cause no issues and in some cases can be left alone. I am only having minor issues right now but it is large and I am still young and it will, over time, continue to grow.
I have an appointment scheduled for June 4th for a neuro-ophthalmology exam because the tumor is encroaching on my optic nerve and the neurosurgeon wants to know if it's affecting my eyesight. Once the exam is done, I'll meet with the surgeon again to determine whether or not to schedule surgery now or put it off for a bit.
Ultimately, it has to come out. It's bigger than a lime but smaller than a lemon, though not perfectly round-shaped, and it's near some very important things in my head. The surgery scares me, the recovery scares me, the fact that the surgeon says he probably can't remove all of it scares me.
It is mostly likely not cancer and that's fantastic. But it's still an awful lot to accept and process.
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