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I had wanted to travel to Australia since I was in fourth grade, when I had a chance to learn about the amazing wildlife there. Finally, when I was 46, a bunch of us had put together a tour. It was great.
But one morning I woke up to see one of the friends, a doctor, sitting at my bedside, thoughtfully resting his chin is his hand. I looked around to see others in the room, looking concerned. One friend told me I'd had a grand mal seizure, and a local doctor was on the way. When he arrived, he looked me over, asked a bunch of questions, and said I could have a CT scan, but I could also just keep traveling. But if it were to happen again, I should go right in for the scan. We decided to continue the trip.
Something inside me knew I needed to check further. Fortunately, the trip continued uneventfully, but as soon as I got home, I went in to my doctor. He sent me to a neurologist, who sent me off for an MRI. There was something on it, so I went in right away for a contrast scan. Yes, definitely something there. The lab report suggested a glioma.
I had no idea what a glioma was, so I tried to look it up. The dictionary told me it was a tumor of glial cells. No help there. What little I could find was scary enough that I worried myself into a second seizure, which, along with the discovery of the tumor, led to prescription for anticonvulsants, which led to the discovery of my first-ever allergy (to Dilantin, only a mild rash, fortunately), so a different drug. That was Depakote. The doctor told me not to drive for several months. I had assumed driving was not a good idea, and had not driven since the first seizure.
The next need was to consider removal of the tumor. I am lucky enough to live quite close to UCSF, and everyone I spoke to steered me there. Actually, several of them steered me specifically to Dr. Charles Wilson. I called the number and asked for an appointment with him – and I got one! I had no idea how fortunate that was. When I saw him, he looked thoughtfully at the scans and said he'd recommend surgery. I asked if watch and wait would be a reasonable option He said yes, but it would be the less cautious approach. He thought he would be able to remove the entire tumor.
I went ahead and scheduled it: a date I remember easily, September 1, 1998.
The anticipation, along with getting used to Depakote, made the following weeks long and hard. Maybe being diagnosed with a brain tumor is one of the scariest diagnoses. It certainly scared me. But finally, the day came. We went up to UCSF. After a short wait, I was brought in and prepared (the prior week I had my head shaved, had another MRI, answered about a million questions, got lost in the endless corridors of the hospital, and waited a lot). This time, into the gown, into the space my husband couldn't enter. A resident doctor came along and gave me a sedative, after which I remember almost nothing until the recovery room. It was done, I was fine, the doctor had been able to remove all the perceptible tumor.
Soon after that, I got the diagnosis: Grade 2 oligodendroglioma. I also got the surgeon's letter to my regular doctor saying I was very likely cured. And a first visit with my wonderful neuro-oncologist who said this was great - I would probably live 10-15 years.
Of all I went through, those words probably had the most to do with the changes I have since made in my life. They mostly fit in the "don't procrastinate" category. Or a variation on that theme: appreciate your time – you don't know how much you have. So I focused more specifically on our personal financial planning, and also on the succession planning for the family business I was running then.
I took Depakote for two years. Its side effects included a greater need for sleep, so it wasn't until two years later that I launched the biggest change. I had always been reasonably active, but had also meant to get in better shape for years. No more slack in that schedule! I began working with a trainer; I started spending a half hour a day on a stationary bike. I found out I could actually run a bit. My husband lured me out onto a real bicycle. What that led to was amazing for me.
Since then I have ridden across the United States. Twice. I spent my 70th birthday in the Suwannee River park in Florida as I approached St. Augustine on the second cross-country trip. I reached the point where, when I was still commuting, I typically rode about 6000 miles a year. Now that I'm retired, it's more like 3-4000. I never would have thought...
I still have an MRI every two years. I have pretty much outgrown "scanxiety" since, first, I sort of think it's gone forever by now, and second, that I have made it to 73, quite a bit longer than the original projection.
I know I have been very lucky - if having a brain tumor can be considered lucky. But I also know that the way I chose to use my time as a result of the diagnosis made my life even better than it might have been without the diagnosis.
A couple of stories, if you want even more: Dr. Wilson showed up in a New Yorker article by Malcolm Gladwell entitled "Physical Genius" in which he, Yo-Yo Ma, and Wayne Gretsky were described as people who could do challenging things that very few people seemed to have the same innate ability for.
And when I spoke to my regular doctor about the seeming inconsistency between the two doctors' prognoses, he just chuckled and said, "Yes. One's a surgeon and one's an oncologist."
I would not have chosen this path, obviously. But it's ended up being good for