Second Surprise...1992, 1993, and '94

A few weeks after we had gotten back from our second London vacation, and having just been at Winrock 6 months, I was exercising after work doing a yoga pose when I fell over and began to experience that intensely dizzying sensation I had back when I had the first brain tumor nine years ago. Believe me, when you feel dizzy like that, you immediately know there is no way it can be normal. A few days later I noticed I was weaving while walking straight and my handwriting was going. I'm an editor and writer so I pay attention to the details. I went to a neurosurgeon recommended at our finest hospital in AR, where we had moved the previous spring. When I told him my background and that I had another brain tumor I was flabbergasted to hear what he said next: he'd stake his medical profession on the fact I didn't have another brain tumor. I insisted on an MRI. Excy had to go out of town to Ohio that weekend, and I went home that night and told him he'd better not, that something was going to happen. He had lined up all these meetings for the house he was designing and decided he'd better go but promised to turn right around and drive home. I got my MRI the next day, on Saturday. Sunday I had gone to the grocery and was putting stuff away when I had a seizure. I crawled up the stairs and lay on the cool bathroom floor. A friend called, and bless her, she came over and cleaned me up, and my parents drove down (I was in another town 30 minutes away) to take me to the ER, where they found my films, and confirmed I had a tumor (the size of a quail egg). They stabilized me and I spent the night at my parent's house. Excy drove home all night to see a pathetic little post-it on the door: I had a seizure and was going to the ER with my parents. Don't worry, I'd be okay.

On Monday the surgeon asked if I thought I'd be 'okay' for a week while he went on vacation (!) I said I didn't have any idea but I hoped so, I was in the middle of editing the annual report and a newsletter. But within days I was feeling so awful I was bedridden. When the surgeon returned, he informed us he didn't feel comfortable operating on me. Excy called my old surgeon in DC, this was on a Friday, and he said to get on a plane and they'd operate Monday. Boy was he mad when I saw him -- at me! He told me I'd have deficits for waiting so long. He was right. It was a difficult surgery, and I had to relearn how to walk and write. Eventually with PT and OT, it came back - I was just a little weaker on the right side. That was when he sat us down and told us I had VHL (von Hippel-Lindau), a rare cancer, and it was time to get kidney tumors operated on. And he was retiring, so he gave us all my files.

Because I had already been diagnosed, I couldn't go to the National Institutes of Health and didn't meet protocol for any studies they had then, but NIH was willing to read my films and make recommendations. I tried AR again, but the drs there didn't know more than I, and one said they were "thrilled to meet someone with VHL so they could study it." No thanks.

We ended up at the Cleveland Clinic, where I had partial nephrotomies of the right and then the left kidney. When I went back to have an operation on the left kidney they found that the right kidney had shut down, so had to go in and put in a shunt and basically get it kick-started again, and I had complications that necessitated having four minor operations. I was ready for them to just take the entire kidney but my surgeon insisted they try one more time because he knew I would have tumors in the future, and the name of the game would be to try to "run " on my own kidney power as long as possible.

Thus began the years of trying to learn as much as we could about a rare disease and find doctors who knew about it, and coordinating the myriad tests necessary for monitoring all the organs where tumors can grow (brain, spine, eyes, kidney, pancreas, adrenal gland...)...it was a challenge to say the least. Although I had health insurance from work, all the surgeries and trips and tests necessitated selling a truck, and a horse trailer, and the years from '92 until I got into NIH in 2002 were always a struggle....

Next installment: 1997: a dark 18 months that were the most challenging of my life to date...