The Last 96 Days

The last 96 days have been difficult.

(Don’t want to read this much? Just scroll down until you see “Day Number 96”.)

On October 1st, I woke up in a hospital without knowing what happened. I would learn that I had a grand mal seizure and that they had found a tumor in my brain during a CT scan. This had all happened when Nicki and I were in Columbia, Missouri for a few concerts and I was happy to be able to make it back to St. Louis the very next day.

We quickly contacted a neurosurgeon and began tests to help us learn more about the brain tumor in my head. That’s when I really started to hear the words that I was scared to hear, especially when said together – brain tumor and cancer. More specifically, the term I was hearing was glioblastoma.

Glioblastoma is a type of brain cancer that they were very concerned about. A type of cancer that would take my life in a year or slightly more if I were lucky. Soon, it was time for my first biopsy. As you may have read before, it went well. We were even able to rule out glioblastoma, but we were unable to get a diagnosis and the waiting game continued.

I haven’t written since then, mostly because it’s very difficult.

I truly enjoy writing, but the pressure in my brain makes it extremely difficult. I always have a headache, it just varies in how strong it is. My ability to read is affected by the pressure in my brain. At this point, some days I’m barely able to read at all, but most days I’m able to read for short moments of time, usually adding to at least one full hour that day. Other common issues I fight with each day are things such as struggling with word choices (ability to use / even remember what the correct word is).

All of these things make it difficult to write, and I truly miss it. Luckily today is a surprisingly good day in terms of my reading ability, and I’ve been able to read for longer moments of time.

That’s why I’m able to write today – and I have a lot to share.

After the first biopsy, I had learned that it was not glioblastoma, that was amazing. While I was in the needed waiting time, my difficult medical case was taken to a tumor review board and was looked at by many doctors from all specialties.

Soon, I began tests again. In total, I have had several CT scans, many MRI scans (I’ve lost count) and one PET scan. I’ve had enough MRIs to find them oddly relaxing, despite not being able to move for roughly an hour.

My medical case was updated with my recent test results and all scans and it was again reviewed by many doctors at the tumor review board.

It was still appearing to be cancer.

This time it appeared it may be a very rare form of lymphoma. This rare form is treatable, but would still most likely take my life in roughly three to five years.

Next up was my second biopsy.

My second biopsy had a small delay due to a common cold and ended up being scheduled for December 23rd. It all went very well, and I was able to leave the hospital on Christmas Eve and even made it to Christmas Eve mass.

Since then, it has been focused on waiting again…until yesterday.

Day number 96.

Yesterday I was finally able to hear results from my second biopsy.

…it’s not a rare lymphoma.

…it’s not cancer.

…it’s not even a brain tumor.

It’s a large inflammation in my brain and it shouldn’t have any effect on my life expectancy.

We don’t know anything else yet, but this is amazing! I can’t say thank you enough to everyone who has prayed for me and my family. I’m still trying to wrap my head around all of this.

The fight isn’t over, but it’s getting easier.

Featured image: Point Reyes National Seashore, California.