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Six weeks ago, I had surgery to remove a large, surprise brain tumor. Now I’m a brain tumor advocate.
A little over a month ago, I was at Disney World, not having a very good time. Which is weird, because I really like Disney – I’ve been five times. I was nauseous, with a nagging headache. I tried to rally, but after slogging through the Jungle Boat cruise, I left my husband and 13-year-old son and made my way to the first aid area to lie down.
When the boys came to pick me up, I didn’t have the energy to walk to the parking lot. With the help of a Disney-provided wheelchair, we made it to our car and onto a nearby urgent care center. Staff at urgent care found nothing specific and told us to visit the ER if things didn’t improve. Overnight at the hotel, I was restless and muttered gibberish, not quite awake or asleep. At 6 a.m. I woke up my husband to go to Celebration Hospital’s ER. That’s the last clear thing I remember until a day later when I woke up in Florida Hospital’s Neuro ICU and was informed of the large brain tumor that had nearly killed me when it hemorrhaged.
But for the terrific doctors and nurses at Celebration Hospital and then Florida Hospital, the hemorrhage could have killed me on November 6, 2018. The situation had been so dire at one point after I had been rushed over to Florida Hospital, that a resuscitation kit was on hand when my blood pressure and signals of brain activity plummeted.
But for the terrific doctors and nurses at Celebration Hospital and then Florida Hospital, the hemorrhage could have killed me on November 6, 2018.
The Florida Hospital neuro-surgical team recommended immediate surgery to remove the tumor before it hemorrhaged again. My extended family across the country had already researched the team, and opined they were more than up for the task, and several had already made it to the hospital before I even woke up. I asked for the advance medical directive forms and did them all in front of the entire family, so we were all on the same page about my wishes should things go wrong (I joke that I’m actually a “German/Irish Potato,” but certainly didn’t want to live like a “vegetable”).
On the evening of November 7, the golf ball-sized tumor was removed during a two-hour surgery. Done and dusted. One humble life saved, a bad haircut, titanium plates, and some shiny head glue gained.
I was in Florida Hospital for the next week. My underlying good health supported a fast recovery from the surgery, but we had to wait for the pathology report, to understand what we’d ultimately be dealing with. I suspect it took so long because what was revealed is very rare: A WHO grade I ganglioglioma, usually found in children, when found at all. Grade I means it was so slow growing, I could have carried it for years.
Although this tumor had nearly killed me, it is considered “benign” and may never return. Ongoing observation is required, however, and I’ve started that process at Georgetown University Hospital Lombardi Cancer Center in Washington, DC, who are leaving nothing to chance. I have a follow-up MRI on December 28.
As soon as we had that pathology report, we drove the 12 hours from Orlando to our home in Northern Virginia in one day. My husband did get a speeding ticket. We thought about playing the emergency brain tumor surgery card, but ultimately, we didn’t feel like arguing.
The effects of my post-surgery anti-seizure and steroid meds made it impossible to even nap on the ride home. To pass the time, I called a friend and asked about brain tumor organizations, and was told about the National Brain Tumor Society.
The effects of my post-surgery anti-seizure and steroid meds made it impossible to even nap on the ride home. To pass the time, I called a friend and asked about brain tumor organizations, and was told about the National Brain Tumor Society. I looked them up, found them on Facebook, then I set up a fundraiser for Giving Tuesday on my phone. It ended up raising $2,200 in two weeks!
For the past six weeks, I’ve been extremely motivated and active. I attributed this to my new lease on life, but I learned from a fellow brain tumor survivor that my incredible energy was possibly due to steroid-induced mania. Either way, I’m in the midst of a wild recovery ride. I have learned is that recovery (for myself and my family) is not to be underestimated, although the amount of love and support received from family, friends, and co-workers has been beyond humbling and gratifying.
Thankfully, I feel like I’ve also been gifted back my brain as well as some basic human emotions after a year (at least) of increasing malaise and strange issues that, despite going to multiple doctors had never been connected to a cause.
About a week after getting home, I was surfing Netflix in a medication haze on my couch after a day of maniacally cleaning everything in sight (thanks, steroids) and yelling at people (thanks anti-seizure meds), and I landed on a Russell Brand performance that struck me. Mr. Brand showed a Michelangelo painting called The Creation of Adam from the ceiling of the Sistine Chapel. Some bright wonk noticed relatively recently that Michelangelo painted God sitting in a brain, with his finger stretched out to spark Adam into life.
Mr. Brand referred to this in relation to the recent birth of his daughter as the beginning of consciousness. However, this seems to me to also give a message about the seat of human potential, of all progress, innovation, and creativity. None of which is achievable without the human brain. Just one little thing we collectively take for granted. That I took for granted, and never will again, now that I have my brain back.
A weird and karmic post-script: There I was, sitting with the neuro-oncologist at Georgetown University Hospital for my first follow-up poring over nerdy data and reports. My phone rang – it was NBTS calling to talk to me about my fundraiser. I apologized and said I would call back. Then I looked for a pen to take notes on the steroid ramp-down protocol. The good doctor lent me hers. It was an NBTS pen.
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