On June 11 I had an MRI. Due to Hospital scheduling changes… on a Tuesday. Weird and awesome. That meant I was able to see the doctor the next day. On June 12 I met with my neuro-oncologist. He liked the things he saw, basically. It’s difficult to approximate the size of what’s left. As is the case with most tumors, it is irregular and non-visible cells can regrow and reemerge from seemingly nowhere (as I well know).
There are a few “micro-hemorrhages” that are not uncommon with one of the drugs I’m on. They just require continued monitoring. They are currently not a big problem, we just want to ensure they stay that way. To that end, my next MRI will be in mid-August. I take my next chemo pills in early July.
I don’t have a ton of apprehension with upcoming treatments because I don’t feel bad (other than the occasional headache. Also, I guess my balance isn’t real great, my coordination leaves a lot to be desired, and I’m fatigued at times). But other than those things… It doesn’t necessarily seem like I’m going to jump from this state to professional athletics but I don’t foresee a ton of jumping from me in general. Considering my physical limitations that’s not a preferred method of motion. Something I can shuffle to, or maybe slowly walk to, may offer a better alternative. My neuro-oncologist would probably point out here that a lot of my cerebellum, a part of the brain that, among other things, controls coordination (coordinates coordination!) has been ravaged by tumors, surgeries, radiation, and chemo. Overall though, especially when adjusting to the situation, I don’t feel too bad.
PS Yes, there’s a post script to this post because that’s the kind of time line we’re working with. Shortly after I drafted this post I started getting headaches. Then those headaches persisted another day. The fact of headaches didn’t concern me as much as dipping in the back of my head in the same area that bulged out when the shunt went in (concave now and convex then). I contacted the doctor’s office but haven’t heard back yet. My concerns became less immediate as my headache started to decrease.
Here is my completely untrained medical opinion: I think the shunt is turned up too high. Naturally a body filters and drains cerebral spinal fluid (CSF). When the normal path was blocked an Endoscopic Third Ventriculostomy, an ETV, was attempted to create an alternative and natural path for the flow of the CSF. When the ETV didn’t work a shunt was put in place. Now that treatments have begun to shrink the tumor the normal passage, the ETV, and the shunt can all drain CSF. They seem to be draining too much CSF. If my doctor agrees when I eventually see him I’ll update. Until then, besides the occasional headache, overall things are good.
Update 7/1/19: A law degree does not a medical degree make (a jd does not equal an md)! According to the surgeon this area has been heavily trafficked so some of the flesh wearing down does not overly cause concern (at least not a lot more concern than brain cancer in general). The shunt does not suck in CSF like a vacuum cleaner. No matter the setting, the shunt just provides a path for the CSF to travel. Therefore, it doesn’t cause the creation of more CSF. Since I don’t have headaches regularly, and the headache I did shortly went away, the area will continue to get monitored going forward. Mostly the advice, as usual, except when it’s not, is to be a patient patient.