Brain Surgery, Literally

In early February 2024, I went into Overlook Hospital for an in-patient EEG to see if we could 'make sure' the cav mal was the source of my seizures. I prepared for that hospital stay like I was going to die- I reread my estate documents, I took my Health Care Directive with me to the hospital. I organized all of Jackie, Sammy, and Pepper's medical records. I tried to do all the things I didn't get to do in December.

Those days in the hospital were long. In trying to ensure Jackie's routine was fairly unchanged that left only lunch time for James to visit me. I cried a lot- all on video EEG. I was very lonely and isolated but I didn't want to inconvenience anyone by asking them to visit and the few people that offered I asked them not to come because I didn't want people to see me like that.

After 7 days of the EEG test, my neurologist/neurosurgeon team decided I should get the brain surgery that we had been contemplating since December. I was also granted the ability to sit in the chair next to my hospital bed! I really wanted to see Jackie one last time before surgery and just in case I died (this was based on my own fear, not a described risk from my care team). At first, the nurses had to seek approval and I needed one of my doctors to agree she could come. Every time I spoke with someone about this, I would cry involuntarily. I hadn't seen Jackie since I went in to the hospital except for our daily FaceTimes. Thankfully, Jackie was able to visit me on February 10th (3 days before my surgery), but only for 30 minutes. It meant everything to me! James and I arranged for us to make Valentine's cards together and draw. Jackie also caught me up on some of the things I had missed. James and Jackie went to the toy store afterwards.

My neurosurgeon kept asking me what questions I had, but I knew I had to get the surgery and I didn't want too many details to scare me even more. In hindsight, the only thing that would have been helpful to know was that I would have 2 titanium plates in my head for the rest of my life. The plates cause me occasional headaches.

On February 13th, in a big snow storm (that cancelled school) I had a right frontal craniotomy to remove the 3mm cavernous malformation. I was unable to see James or Mom before the surgery because of the snow storm. We had an old fashioned phone call using the phone in my hospital room, I had memorized James' cell phone number to call. I went home 2 days later with 30 staples down the right side of my skull but behind my hair line. One of the amazing women on my neurosurgery team braided my hair in front of the incision line. I was back on my anticonvulsants. I was also back to making a whole bunch of doctors appointments.

I was very thankful that the surgery went well and happy that I could at least not worry about the possibility of another brain bleed, but I was still clawing my way out of the darkness towards the light. And I still hadn't started focusing on what I could learn from the experience.