A few hours post-op
Today is pretty bitter sweet. It marks my 9 year Cancerversary... but with an asterisk. As I said in my last post, 9 years is a long time, 9 years with GBM is a lifetime. The excitement of making it this long is not what I was hoping it would be, but 9 years nonetheless, is quite the accomplishment and I am happy to be here. I am nowhere near done with this life so I hope you all aren’t sick of me just yet.
--
Surgery went off without a hitch! I’m sure everybody is super curious as to how an awake craniotomy takes place, so I guess I can go ahead and walk you through it as I am now a seasoned veteran.
I checked in bright and early (around 5:30am) and then waited.. And waited.. And waited until about 7am. Around 7am I was brought back to the initial surgery waiting area where I with 3 other patients all waiting to go to their surgeries. Once I arrived in this secondary waiting area I was greeted by countless people that would be involved in the surgery. So many introductions and the only people I really cared to see was the Psychotherapist that would be doing all the testing during the procedure and my surgeon. Both of which showed up and left shortly after. After meeting what seemed like a dozen or so people that would be in the room with me and filling out 3 different waiver forms for studies that they wanted me to take part in, it was time to get going. They rolled me back into what was a pretty straight forward surgery room. Lots of bells and whistles and a bunch of crap that Im sure was important, but I had no clue as to what it was or how it would be used. Since this was going to be awake and I would not be able to move my head for a long period of time, they first had me awake to set me up in a comfortable position laying on my right side (tumor is left frontal). Once I felt comfortable, that’s when they knocked me out and cut me back open. Once I awoke, I was a bit shocked not to see the psychotherapist I had already worked with and done all of my baseline tests with. I asked where she was and was told she had something she needed to attend to… I guess that was a bit hard especially with the new lady not quite as pleasant as was the original. I also quickly realized that my lower half was in a terribly awkward position and when you are literally strapped to the table, it is very hard to move around. Trying to get my lower half comfortable again was probably the the hardest part (oh and the sound of the machine they used for the actual resection reminded me of being at a dentist and listening to one of the drills they use *shudder*). Once I was comfortable again, we began doing tests as the surgeon requested. Most of them were based on my right hand and foot movement. Tap your toes, tap your fingers, move your foot up and down like you are driving a car. There were a couple cognitive tests, but not nearly the extent that I thought there would have been based off the previous meeting with the psychotherapist. At one point I began to feel some anxiety creep up with so many people walking around the room, so I *attempted* to meditate and was told I need to stay present. Guess meditation was not what they were needing at that point. Im not sure how long I was awake for the actual resection, but after what seemed like maybe only a few hours I could hear my surgeon saying that “Everything is looking good” and “I think we got it all!” These were both great to hear and that’s kind of all I remember. They put me back to sleep to close me back up and I woke up again once they were wheeling me back out. I was sent straight to the Neuro ICU and from there, the idea was to stay for a night or so and then transfer me to a regular room. Since I was doing so well with pain and there was really no swelling or residual symptoms (other than some nausea) I was released straight from the Neuro ICU after 2 nights :) Since then I have been home recovering and resting. The pain comes and goes, but I think I am rounding the bend and hopefully almost out of the woods.
I had my follow up appt. with my Neuro-Oncologist yesterday to discuss the surgery as well as the follow up MRI I did the day after my surgery. I am happy to report that they were able to successfully remove all the tumor cells and "with an exceptional boundary area." The pathology of the tumor sample came back and as expected, it was Grade IV Astrocytoma (GBM). A decent amount has changed since my first surgery and apparently the GBM that I have is now considered less deadly as the two most important bio-markers are both in my favor. The treatment recommendation will be exactly the same as the first time around with 30 days of radiation M-F and an oral chemo taken every evening right before bed. After the first round of high intensity therapies, I will get a month off. Once that month ends I will begin routine chemo (5 days / month) for up to 6 months (or as long as my blood counts will let me). I will also be getting much more into my integrative therapies / diet to combat this from every possible angle.
As I mentioned in my first post, this will no doubt be a double edged sword. I know what I am getting into (Good) & I know how much it will suck (bad). I am hoping you all stay with me through this and all the hard days that will no doubt come along.
--
Thanks, Thanks, THANKS! I was completely overwhelmed with all the love and support that I have been showered with. I have had so many people ask what me what they can do for me and all I want is for anyone readying this to tell those you care about how much you care about them. I was able to get through most of the messages via text / Instagram and since I no longer have Facebook on my phone, I am slowly working through those when I am on my computer. Having been able raise over $18,000 in a week was completely un-expected and totally mind blowing. All the prayers, vibes and anyone that held space was truly appreciated and felt. I might be doing this all myself, but I have an army of people behind me that are all on my team. I played QB and I am used to being the captain, so this is just another game to me :) You all are so special and love every. single. one of you <3
Comments
Post a Comment