For some reason, my brain must have blocked out what the healing process was like for me in 2010 when I had surgery. I don’t remember there being this much pain. I don’t remember feeling like my brain was sloshing around in mush. It’s hard to find a comfortable position to lay down. The only relief comes from laying in a very intentional way and via pills that make me feel like a zombie, inducing obscenely bizarre dreams. I find myself waking up in the middle of the nights, in a pool of my own sweat, confused about the dreams. They feel so real. I wouldn’t call them scary, just very uncomfortable and vivid. The kind that make you question reality.
I keep having to remind myself that this was not the same surgery I had in 2010. This surgery was hours longer and more complex than last time. I don’t know why I have set the bar so high for my recovery – as if there would be no pain and no suffering. This is brain surgery. It’s not a walk in the park.
I have to apologize, as I’ve probably given different narratives to different people at different times about my pain. I remember sending texts after surgery telling people how much pain I was in and I also remember sending texts telling people how the pain seemed to have gotten under control. And then last night we wound up in the Emergency Room in excruciating pain. 14 on a scale of 1-10. Yesterday afternoon I called my surgeon on the after hours phone line to ask about my increasing pain. He instructed us to head to the nearest emergency room and ask for a CT scan. He said something about how he wanted to be sure sure there wasn’t fluid leaking out of my brain I think? So gross! At the ER in Mason City the doctor on call ordered the CT scan and confirmed that there was nothing to be concerned about after reviewing it. She even called my surgeon at Mayo and they both looked at scan. They said there were some normal changes but nothing to worry about. After the scan, some bloodwork, and a lecture from my very patient doctor and tired wife about taking pain pills when Alicia tells me to, we were on our way home close to midnight.
As I type these words, I’m floating on zombie pills, not a care or a pain in the world for now – though I’m anxious for what the evening brings. Will I wake up in a pool of sweat – seriously disturbed by the events of a short oxycodone-induced dream again? Will Alicia have to wake up again worrying about me? Hoping we both sleep like babies tonight.
On Friday, March 8th Alicia and I rode with my mom to Rochester, where we met my dad at Mayo Clinic for a follow up appointment. This appointment was with Dr. L – a neuro oncologist. The neuro oncologist I was originally going to see (Dr. H) decided to move away to work at Mayo Clinic in Jacksonville, FL. I don’t blame her – it’s nice there!
I really like the new guy. He’s from the east coast. I like his accent. I think my favorite part about him was how he did not hesitate to reach for my hand several times during the consult and empathize with me as I attempted to make sense of all that is unfolding. Yes, there is so much hope to be had, but it is so terrifying.
The final pathology report from the tumor won’t be finished for a few weeks, but Dr. L shares information from a preliminary report. The cancer is a WHO Grade III Anaplastic Astrocytoma – IDH Mutant. Normally, I don’t get too excited when I’m told I have mutant grade III brain cancer, but this is good news for a few reasons. This is the same diagnosis as I was given in 2010. It has not progressed into a higher grade. Brain cancer is an asshole. It likes to grow blood vessels and tentacles and turn into a mind-eating, nausea-inducing, memory-devouring, terrifying monster. It is not uncommon for it to grow from a Grade III to a Grade IV tumor. My surgeon, Dr. B thought it looked to be high grade after the surgery on March 1st, so we were a little concerned that I may be potentially dealing with a Grade IV tumor this time. But we are not!
The preliminary report says that the tumor is IDH Mutant.
In a nutshell, IDH-mutant tumors respond better to chemotherapy and grow slower. Here is a link to one of those academic websites that explains more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6029820/.
After the appointment I made my mom and Alicia take me out to my new favorite place to eat in Rochester – Forager Brewery. It smells funny in there and I don’t think the beer is as good as my favorite North Iowa brewery, but the pizza is amazing!
We have an appointment again this Friday at Mayo. The plan is to meet again with Neuro oncology team and start talking more about when I will begin chemotherapy. I also have an appointment with my surgeon – hoping to get my staples out. I will also talk to him more about managing pain.
Alicia and I are also planning to stay in Rochester on Friday night after my appointments. One of my favorite songwriters – Charlie Parr is playing a show in town. Looking forward to some live music!
On Saturday we’re headed to Des Moines for a celebration of life honoring my friend Kathy Wennihan, who recently passed away after a lifetime of dealing with cancer. I’m really looking forward to visiting my Above + Beyond Cancer friends for an afternoon of hugs and memories.