Tuesday, September 7, 2010
This August 30th was the 20th Anniversary of the first time I had brain surgery. In 1990 I was the mother of a one-year old baby girl. Jon and I moved four times the year before that, because our apartment had been destroyed by the Con Ed Department Steam Pipe Explosion-a true New York City story. We had decided a lucky 15 minutes beforehand to take a walk with our then 4 month old baby girl, and because of our miraculous timing, we had been left unharmed…had the timing been different, that story could have been different…our next door neighbor was killed in her apartment. One morning after happily and finally being moved into the last apartment, I woke up and whacked myself in the eye with a phone…who does that? Guess I couldn’t wait to pick up the call. Phones in those days had a great deal more heft to them than they do now and I really felt that heft…I genuinely saw stars, and the next day I saw double. I called my eye doctor and described my problem, made an appointment, and barely made my way to his office. When I arrived, he did his Eye Doctor thing-he looked in my eyes, had me cover one eye, then another, gave me drops, then looked again. At the end of that visit I was prepared for the diagnosis, and he told me “There’s nothing wrong with you”. I said “How can that be-I can’t see? Is that an ophthalmological point of view or a neurological point of view?” He said “It’s an ophthalmological point of view.”…and off I barely went as I made my way home to begin my long research project to find out what was wrong with me. Little did I know on that day that that whack in the eye with the phone actually would serve as an alarm bell about a tumor in my brain that otherwise I might have gone years without noticing, but the swelling is what caused me to have tests that I wouldn’t have needed until perhaps it was too late to do anything. Little did I know on that day, that twenty years later that the project I was embarking on, would be such a long one, that the lessons would be so numerous. Little did I know on that day that many years later after two brain surgeries, many MRI’s, and many opinions I would discover that what I had was a very rare kind of cancerous brain tumor. What a long, strange trip it’s been. My oldest daughter is now 21…we just dropped her off at college to complete her Senior year, our youngest daughter is 14 and just started her first year of High School-we’ve moved several other times, most recently this year. This year in particular has been a difficult one, but it’s my hope to be able to pick up this blog where I left off last year, and to pass on the lessons that I’ve learned over the last 20 years. The education that I’ve received is not one that I would have chosen, nor would it be a school that I would have attended…but I did, and the information I’ve learned is worth others knowing. Beyond that, I just received confirmation from NYS, that BRAIN MATTERS INC. is now my official non-profit corporation…this took longer than I thought, and it’s still my hope to walk from my house to Massachusetts General Hospital next Fall to raise funds and awareness for brain tumors. I thought it would be this Fall, but between the stress of this year’s other events and some post radiation effects that slowed me down, coincidentally the paperwork timing and my personal timing worked out; even if I was physically ready to walk, paperwork-wise I wouldn’t of had everything in place. My reason for walking to Mass General is not only because that was where I went for Proton Radiation two summers ago, but because as someone who has seen many doctors and been to many hospitals, it was one of the best and most positive experiences I’ve had within these many years, and I’d like to give back what I can to them as I start on this next chapter in my life. As of my last visit this June, my tumor has not grown…that’s great news! The concept of being able to think more full heartedly about the next chapter in my life is not one that someone whose been where I’ve been takes for granted. I’m back, we’ve moved into our new house…I'm looking forward to the future. My hope is that by my sharing what I've learned during these last 20 years, that it may make it just a bit easier for someone who is about to face similar circumstances...even just a bit, and for me personally, maybe it feels like there's a reason for this School I've been made to attend. May The Force Be With Us All!
Labels: brain tumors, proton therapy, radiation therapy
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Nice that you're back. Glad you're doing well. Send along the new address when you can.
Glad you are back blogging!
You go girl! We're all tuned in!
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