Well, it took me 1 week and 1 day after my surgery to get back home– and wow is it nice to be home! I have improved every day, and just being in my own space with my family has been rejuvenating!
The day before surgery I had pre-op MRI and lab testing. As part of the MRI they had to shave some patches of my hair and place small stickers around my head. In addition to those in the picture below there were 6 or 7 on the top and sides of my head.
The next day we got to the hospital for my surgery early in the morning. We met with the surgery and anesthesiology team. The plan was confirmed to go forward with an awake craniotomy– I would be awake for the entire surgery so that the team could make entirely sure that they left the parts of my brain that I need– specifically the parts that control my ability to move my left arm, where the tumor looked to be very close to on the images.
Prior to the surgery I drank a special type of medicine that would basically make the tumor, light up or fluoresce in the operating room under the microscopes. For the next 48 hours I then also had to be kept out of sun or bright lights because this medicine put me at higher risk for easy UV damage- like a sunburn. This meant that for the next 2 days I had to be completely covered with towels or blankets to avoid light on my skin– luckily I didn’t have to move too frequently, but when I did, it was a process.
The surgery was an overall excellent sucess. The vast majority of the tumor was removed, although a tiny part had to be left behind because it could not be removed safely in a way that would preserve my motor function. I had what is called the “maximal safe resection” – which is the absolute best I could hope for. Being awake for the surgery was not as scary as I thought it would be. During the beginning the anesthesiologists let me hold her hand, and I had calming medications that made everything more tolerable than even just the idea of it all had been before it started. They even allowed me to have sips of water during the surgery! When it was over I was transferred to the ICU- exhausted but relieved, and happy to be alive!
While the surgery left my motor cortex intact, the sensory side of things has definitely been affected. Luckily my hand feels pretty normal, but my left leg, side body and back are all pretty numb– I can feel some things, and it seems to be getting slowly better (or at least I am getting more used to it). However, because of these changes after the surgery I was pretty unsteady on my feet. I worked with physical therapy and occupational therapy, and when I was medically ready for discharge I still wasn’t quite safe to go home, which meant I was transferred to an inpatient rehabilitation hospital close to home to continue working on getting better at moving safely.
Luckily, the rehab hospital was closer to home and I was able to see the kids the first night I arrived. Over the next 4 days I worked hard- saw lots of improvements, and then was able to come home for real! What an amazing feeling it is to be home. I feel so lucky despite this whirlwind, and determined even more to keep moving forward!