Craniotomy Practice! Getting Good!

As most of you know, I had my second craniotomy on September 20, 2017. To recap what led up to it, I had over a year of stable MRIs and a "relatively stable" MRI in the summer. This essentially means that there was something in there growing extremely slowly. We tried a clinical trial of chemo that we were all super excited about and it knocked out my immune system. I had to be taken off the trial and then we had to make some tough decisions. Ultimately, we chose a second surgery to see if we could get this small nodule out of there, analyze it, and hope for a more targeted treatment. Ten days later I was back under the care of the most amazing surgeon and human being I've ever met. 

Going into the surgery was very different from the first surgery. First, I knew what to expect. We knew the procedures, we knew the team, we understood the procedure. There was very little extra stress because there were fewer unknowns. Hell, the first time we didn't even know for sure that I had brain cancer. The fear of the diagnosis alone was paralyzing. 

Being a craniotomy veteran also allows for a certain amount of influence. I was able to request a lower dose and shorter duration of steroids, for example. I was able to request my same anesthesia team. I was able to advocate a little for a better recovery area and although they claimed they had no influence over this, the process was so much more pleasant than the last time, I have to insist that someone helped me out there.

There seems to be a time warp when it comes to craniotomies so the doctor and Jason seem to disagree on how long the procedure lasts, but apparently the entire process from prep to finish takes approximately 5 1/2 hours and the brain surgery procedure itself takes 2-3 hours. When I woke up in recovery I had these two awesome people with me, one was an anesthesiology resident and the other was a student. They found Jason and Kim and pretty much let them hang out with me the entire time I was in recovery until they could escort me to my room.

Due to my continued low blood counts, I had to have a bag of blood during surgery and two more afterward. I had never had a blood transfusion before and I couldn't help but wonder who this blood came from. So weird that they put someone else's blood in my body. When the student started the IV for the first bag that I was awake for, blood squirted out everywhere. I was worried sharks or vampires were going to rush in and Kim had her camera out like she was the paparazzi. Also, just so you know, the blood bags were labeled "tested for Zika." So apparently that's a thing now.

Once in my room, things went the way all recovery goes. I spent 2 nights of being woken up constantly. The people who come in are so nice and it worried me that I simultaneously wanted to hug them and rip their heads off. Of course, the steroids don't help with temperament.

A side effect of this surgery that I didn't have last time is vision loss in the left field. After the first surgery I did permanently lose the upper left quadrant (10 to 12 o'clock positions), but that is not something I've really missed. The only reason we know it's gone is because the optometry scan shows it. Going in for this surgery, the surgeon said that there could be more loss on the left side. I agreed that this would be ok. Apparently right after the surgery, when they woke me up, they gave me a vision test and I could see the same as before. Later that day and the next day I could not see anything in my left field, out of both eyes. Therefore, it is most certainly the case that the vision loss is temporary and due to swelling. I mean, come on. The man cut and scraped the entire tumor bed of any cells he could find that looked cancerous or necrotic. So, yeah, there is bound to be some swelling. It's now been a couple of weeks and I'm seeing better off and on. I've done some investigating and apparently not only is this common in these procedures, it is also common for the sight to just suddenly return. 

We saw both the surgeon and the oncologist on Monday for the first post-surgery follow up. The results were mixed. First, they were all extremely excited about how successful the surgery was: how completely they were able to resect the nodule, how much extra necrotic tissue they were able to take out, and how clean the scan looked with the resection cavity. The initial pathology showed 15% of a very small amount of tissue to be active tumor cells and the remainder to be necrotic tissue. Also, the tumor cells did not mutate. By my estimation, this is a mixed bag. The baseline expectation would be that the nodule would be mostly Glioblastoma cells because that's how GBM works- it takes over everything. Also, it's typical that if you do damage cells with chemo and/or radiation (which is where the necrotic tissue comes from), GBM can and does repair itself. 85% of mine did not repair themselves. Further, let's discuss mutation. When GBM is damaged, it will work hard to repair itself and often mutate to survive. In some ways we hoped for a mutation that would allow for more targeted treatment but in other ways this could be bad. What if it mutated into something extremely robust? Well, mine didn't mutate at all. So that's something I guess. We are now discussing the next line of treatment and for me the jury is still out. I need to do a little more research. The bottom line here is that 1) I still have brain cancer 2) I'm still working to make the environment it lives in as inhospitable as possible 3) it's still considered terminal, although people are living with it longer and longer. We go back to Houston for appointments on Monday and then I will have a break just to finish healing from the surgery for a month or so. I will work through the gripes and frustration of not being able to see clearly and I'll be able to hang out with more friends by asking for rides.