forward: In 1997, a sainted woman whose husband died of VHL and whose young son also had it, began something called the VHL Alliance, a nonprofit dedicated to the dissmination of info on the disease and support of the study of it. Although it's a rare disease we are fortunate in that scientists and researchers want to study it b/c it can benefit those with other cancers, mainly brain, kidney and pancreatic. Today, J's efforts have evolved into a world-wide organization, and VHL Clinical Care Centers exist in certain states and throughout the world. VHL Alliance has raised money to fund the study of the chronic disease. Finding it was a ray of hope: talking to other VHL-ers and knowing you were not alone was priceless. Mine started fairly late, it usually hits during puberty, and it's rare when it doesn't run in the family -- not until 4 years ago did we know anyone else in my family were afflicted by it. I ended up getting involved with the Alliance enough to write a few articles for the newsletter and the script for their intro/fundraising video, and when regional meetings were in TN, we drove to them. I then hosted a regional meeting in AR. Through the contacts we made, Excy learned of NIH trials studying brain, kidney, and pancreatic cancer I could enroll in, and they accepted me the fall of 2001. Finally, after so many years I met NIH protocol. In exchange for being in research trials, medical tests and cares VHL related are free. We no longer had to try to coordinate all the tests and MRIs and find doctors to examine them. We had worried constantly about the things that were slipping through the cracks.
Our trip to NIH in October, I was nervous not only b/c it was the first time we had gone to NIH and we didn't know what to expect, but I knew I had another brain tumor that was beginning to manifest itself. I was prepared to be told it was time for another surgery and to go -- wherever they recommended (my surgeon at Georgetown U Hospital having retired). I was stunned when the surgeon came in, pointed out the tumor on a MRI, and said they'd operate the following Monday. Nirvana.
And it was the quickest recovery I've ever had. And, they listened to my plea and saved as much hair as they could, shaving up the bottom but leaving a 'curtain' on top to fall over the incision. Yes, I'm vain about my hair. I also know from the previous surgeries my head is now lumpy and caved-in in certain areas and I do not look 'cute' shorn. Some people can cue-ball. Others can't.
Because NIH is a research facility they are more attentive than a regular hospital -- more nurses per patient - and less hassled. But sometimes you have to put up with some odd stuff. I'd like to speak to the dim bulb who thought putting a patient just out of brain surgery in a vibrating bed would be a good idea. Its supposed to keep you from developing clots, but it was an awful night. I'd start out at the head, get shaken down to the foot, and Excy and a nurse would grab me under the arms and haul me back up to the head again. Geez. As I was being taken down the hall into the regular recovery floor, I saw the bed being wheeled out of the room, so I guess that disaster was averted for other patients. I've had several other surgeries there and have yet to be in that kind of bed again, anyway.
We had to stay over Thanksgiving, which we spent with our friend and my ex-boss, K. The drama was the day we were to leave. I had to get my stitches out first, and make the flight, and for awhile it looked like that might not happen. Finally a sleepy intern with the foulest breath in the world came in the room -- could knock an elephant over -- and breathed on me (I saw K. practically backing out of the room), and began tugging away, angry they just hadn't shaved my head to save him a few precious minutes of exertion. Ass. Women like their hair.
My head was super-tender when we got to AA -- the airline insisted they put me in some wheelchair that transfers you directly into the plane despite my protests I could walk to the nearby seat - and then they drop me. That further rattled the 'ole bean and it was throbbing by then.
So when a 'lady' knocked me in the head with her purse getting into her seat in the row behind us, I leaned forward and began to cry softly into my hands. Another woman on her row asked Excy if I was alright, and he turned around and said I had just had brain surgery. "I didn't hit her that hard!" The woman who had hit me piped up. Geez. I felt like turning around and asking if she'd like to try it again. Manky cow.
Getting home took forever, and when we finally did the house was a disaster. We had expected to be gone only one week, and the young house sitter apparently had stopped doing anything week #2 but throwing food down for the cats. The place was foul and stank to high heaven. The cats were cold and indifferent -- they were pissed to have been abandoned -- and I opened the windows and collapsed on the bed. When they realized we had not been gone on a vacation, they all came in and apologized and we spent the night covered in fur blankets. All was forgiven. It was bliss to be home again.
Next up 2006