The Hard Road Ahead

It’s been a while since my last update or blog post.

This is mostly an update. Sorry no picture for this post.

While Christmas approaches we have been through a lot and are about to go through a lot more.

I was in the hospital last week for brain swelling. It’s the worst I’ve looked and felt through this entire experience. I lost feeling on most of the left side of my body. I couldn’t use my left hand (I’m left handed). Hand-writing and daily tasks became extremely difficult. I needed a STAT MRI which showed radiation necrosis swelling in my brain. It was significant enough that it was pushing on the other side of my brain and creating another mass-shift– disrupting the center line of the two brain sides of the brain. The results were the same “whooshing migrate” headaches I felt in April 2019 but also the loss of strength on the left side of my body. This included my face. Paige said it looked like I had been to the dentist. I had slowly noticed this happening but I had conflated it with another issue (taper off of another drug). After my MRI result discussion I was directed to increase my steroid intake, which should also help with the control of the left side of my body. Unfortunately, by this time the swelling was so bad it was causing serve nausea and I couldn’t even hold down water. So every time I took medicine I threw it up. At an appointment at the cancer center they took a look at me and sent me to the hospital for IV fluids and IV steroids. In the meantime they made me an appointment at Wake Forest Hospital for a surgical consult about a less invasive procedure to remove the dead brain tissue from the necrosis, which would stop the swelling. The appointment was set for Monday 12/14/20. I would have to improve by then.

To review, in June 2019 I received stereotatic radiation treatment to my brain to kill any remaining cancer cells possibly left there after my tumor removal surgery. One possible side effect is necrosis, or dead brain tissue. We’ve since learned it appears 15-18 months after treatment which falls in this window. My radiation oncologist said I appeared to be a “text-book” case of necrosis.
It’s not cancer but it does have its own serious issues that need to be handled. We known that I would probably need to have a procedure to remove this tissue but previous appointments were optimistic that this procedure could wait until a various time in 2021, possibly after COVID numbers went down. At the same time they also proposed a less invasive procedure called Auto-LITT that showed a potentially incredible recovery time. Two of my doctors recommended Wake Forrest for the procedure. A consult was set up for next Monday 12/14/20.
My hospital admission was set up with the express goal of getting me healthy enough in time to a surgical consult at Wake Forrest to evaluate me for this procedure.

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