Thirty years ago today doctors finally figured out what had been making me sick for the previous two and a half years: I had cancer of the spinal cord.
Two days before, my doctors performed a myelogram that revealed there was something amiss in my cervical spinal cord. At the time, they thought it was just a cyst. Turns out they were half right -- there were two blood filled cysts, one at the top and one at the bottom, attached to a cancerous tumor that had infiltrated my spinal cord so effectively that they were only able to remove about 80 percent of it after 15 hours of surgery.
The tumor was an anaplastic astrocytoma, also known as a grade III astrocytoma. It’s the most common brain tumor found in children but is found much less frequently in the spinal cord. The tumor was so intertwined with the nerves of the spinal cord that one was often indistinguishable from the other. According to my surgeons, their rule of thumb was to tug on a small piece, and if I kept breathing, to cut it out.
The cysts that they found were caused when the tumor bled at two different times. The first cyst, the one located at the top end of the tumor (right around the C4 vertebrae) is most likely was caused the stiff neck that I developed in April 1975, the first evidence that something was going wrong. The other cyst was attached to the bottom of the tumor, near the T4 vertebrae. The additional pressure it put on my spinal cord in was caused me to lose the use of my hands during the spring and summer of 1977.
At the time, there weren’t any chemotherapy drugs that were effective on the central nervous system, so excision and radiation therapy was the extent of the treatment available. There was less than a five percent chance of surviving for more than five years. Today, those odds aren’t much better, even with the development of new chemotherapy drugs. My parents were told I most likely would not live to finish high school.
The talents of the two surgeons who took me on were extraordinary. Although they ended up cutting out a great deal of tumor/nerve tissue, I was only in intensive care less than a day, and I walked out of the hospital five days after the operation. When I was released from the hospital, I took with me what would be the first of many tattoos, a series of blue dots tattooed on my upper back. These small tattoos outlined the area that would be subjected to 6000 rads during radiation therapy that I would get every day, Monday through Friday, for the next six weeks. The radiation treatments gave me an extremely raw throat, severe laryngitis, and left me with a nasty sunburn on the front of my neck during the treatment and for a time after -- it seems I was always chewing on a piece of Aspergum to try and ease the pain in my throat and rubbing creams on the skin to relieve the pain from the damaged skin. But I never lost any hair and I never suffered from nausea.
Although I had a pretty great freshman year after recovering from the operation -- I even spent the following summer in Germany as an exchange student -- the surgery and radiation weren’t enough to stop the progress of the tumor. I had a second surgery to attempt to remove the rumor on October 16, 1978, 362 days after I first was diagnosed with cancer. This second surgery was not the relative walk in the park that the first one was. The tumor had grown upward in the last year, and was now infiltrating the medulla oblongata, part of the brain stem. My surgeons were extremely aggressive in trying to remove it for good. Even though their actions caused me untold agony and suffering at the time (right after the surgery, I was totally paralyzed for 11 days, lost all feeling in and use of my right arm, and suffered from hypersensitivity in my left arm and right leg that were so severe that a puff of air or a tear landing on the skin felt like having a butcher knife plunged into me), their skills were among the best anyone could have asked for and bought me nine years of remission.
I had one more operation to treat the astrocytoma. On October 21, 1978 -- just over nine years since my previous surgery and ten years and two days since the tumor was first confirmed, not to mention five years past the time when I was expected to die -- I underwent another 12 hour surgery on my cervical spinal cord and brain stem. Thanks to the skills of yet another amazing surgeon and the use of hypnotherapy, I walked out of the hospital ten days later.
As you might guess, October is a tough month for me. Making it even harder is that my mother’s birthday is October 20, and it kills me that we had to spend so many of them either with me in the hospital having incredibly risky surgery or reliving the memory of her previous birthdays spent at the side of my hospital bed. She is the reason I lived through all of those operations, and I miss her so very much.
That insidious tumor that was discovered 30 years ago today changed my life in more ways than I can explain. There’s things it put me through that I’d gladly have done without -- the summer of 1984, spent in the hospital having surgeries to fuse my spine and stop a spinal fluid leak that cost me my left trapezius muscle and almost cost me my life when I developed bacterial meningitis twice. But there’s many good things that never would have happened had I not found myself battling cancer, including finding my niche in the developing field of online political activism at the dawn of the World Wide Web, and moving to Washington DC, where I met and married the love of my life.
All in all, it’s been a hell of a ride for the last 30 years. I’ve spent a great deal of it wondering why I not only beat the odds but blew away everyone’s expectations about what I would be able to do given the severe damage to my spinal cord. I don’t have any answers better than one a dear friend helped me find years ago during one of those late night at college, drinking with friends and discussing the meaning of existence discussions. When I asked him why he thought I lived when so many in the same situation had died, and he said, “To talk to people, to tell your story.” SO that’s what I do.
Thank you for listening. I hope to be able to retell the stories of my life for many years to come.