I saw Dr. NeuroSurgeon again the following Thursday (a week and 2 days) after I was discharged from the hospital. There are a few more details I’ll write about separately, regarding my hospital stay, but let’s stick with this narrative thread for the moment…
Before I left the hospital, they had scheduled me for a follow up visit with Dr. NeuroSurgeon for 8am. In Boston. On a weekday. Fair enough - challenge accepted. I was so relieved to be leaving the hospital that day, with the "not urgent" pronouncement from the radiologists, that I was willing to deal with the misery of Boston morning traffic. Which was good, since I didn't have much of a choice.
As it turned out, my (recently retired) dad was available to drive me, which made things a little easier. It was a rainy, gross drive, but we made it *just* on time, and I settled into the very spacious, very clean, quiet waiting room. I was once again struck with gratitude that, whatever it was I was dealing with, it was not as bad as the folks around me seemed to be facing. The waiting room, while not overly full, was noticeably populated with folks facing major mobility and cognition challenges. I didn't have to wait long before I was brought back for the obligatory check in, and then I met with the doctor.
It was nice to see Dr. NeuroSurgeon again - he is very personable, easy going and easy to talk to, and he doesn't get too swept up in jargon.
He told me a few more details about the "thing" on my brain:
- While I was really clinging to the word "meningioma," one also might call it a tumor. *sigh* okay.
- It is the size of a ping-pong ball... This really threw me off, because the folks at my local ER told me it appeared to be only a couple centimeters, and I liked the idea that it was so small. A ping-pong ball seemed much MUCH larger. Dr. NeuroSurgeon said "smaller than a golf ball," but that somehow didn't seem to make me feel better about it.
- It is ON, not IN, my brain, which feels like an important distinction.
- However, it is ON the section of my brain that controls speech - "high value real estate," according to Dr. NS. As someone very comfortable with expressing myself verbally, this upped the ante a bit more. While it's not impacting me right now, the notion of losing that faculty remains very daunting... though not insurmountable, if I focus on the positives.
- He showed me the image and I snapped a picture with my phone (thus the picture shared on the blog).
- We feel fairly confident that it's a meningioma because a) I'm female, and they impact women more than men, b) I'm in the general age range they most often present, though a little young, and c) there are no indications (via bloodwork, etc.) of other more scary (read: cancery) issues. Meningiomas are most often benign, though they are occasionally not. The only way to confirm 100% that the thing is benign is through pathology. (In my head, I thought, "so we have to wait until I'm dead to see what the thing is?" and then realized that it could be removed and then sent to pathology. Duh.)
As we continued to chat, the doctor explained that we have 3 choices for moving forward.
1. Monitor and wait and see.
2. Remove it surgically.
3. Radiation.
As he explained it, radiation is the obvious and clear-cut worst option. It doesn't seem likely to provide resolution, plus it's invasive and unpleasant. So we take that one off the table and we're looking at 1 and 2... or, more accurately, a combination of both.
Back in the hospital, when we first met, he told me that the abnormality/meningioma/tumor would likely need to come out at some point. My interpretation of that was that it might NOT need to come out at some point, and if it wasn't urgent, and wasn't impacting me, then I might never need to have brain surgery and deal with this terrifying thing. Hurray and hallelujah - just a weird couple days and a brutal headache - no harm, no foul!
On this day in the clinic, though, he was more definitive that it WILL need to come out at some point. Exactly when... remains a little bit nebulous. When he showed me the picture of the thing, he pointed out that it is irregular in shape, which indicates it is active and likely to grow.
He did not feel that surgery was an immediate need, and we agreed to wait a few months for another round of images before we move forward. He seemed to be saying we might wait a year or more to feel like surgery was the necessary move, but that we (I) might decide sooner to have it removed, just for peace of mind.
I agreed with him then, and I mostly feel fine about that choice today. I do feel, however, that I'll be after the peace of mind thing a lot sooner than it seemed like that day. I left there thinking, we do another MRI in June, maybe another in the fall, and then just see what we see...
But the longer I wait, and with every weird headache, ache, or pain that pops up, I am more anxious and scared. This entire ordeal is just so bizarre. The incongruity of feeling mostly okay, mostly no big deal, and then battling the invisible demons known as headaches, and/or suddenly remembering that there is some ping-pong sized gremlin attached to my brain... well, suffice to say, I feel on edge a lot.
And that's the basic gist of where things stand right now. We're waiting and seeing, and I'm taking every day as it comes, which, really, is all any of us can do in the best of times.
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