Houston We Have a Problem

I've fallen down a hole the past three weeks. Haven't been able to rebound from the Texas trip, and am spending the days resting and rehydrating. A lot. Even sent Excy off to a 4th of July party with a platter of deviled eggs. Hated to miss fun times, but it's taken me years to learn to stop and hibernate when I must, and not push myself and feel worse. What I lose, I don't regain. At least Sci-fi was running their annual Twilight Zone marathon, so the cats and I were able to enjoy our quiet evening...yesterday I got cabin fever so bad we decided to risk a movie. (Midnight in Paris - which was entertaining.) But now I'm down for the count again, and spent most of the day reading The Help. Always want to read the book before seeing the movie....

Critter update: Three weeks ago just before we left, Francis fox and Mr moved the kits into a deeper part of the woods. Usually she doesn't do this so soon, but those damn yippy dogs of our trailer neighbors (dachshunds) came over twice, and scared her, I think...it's not like her to not come back when they are settled, though, so I'm worried. Our neighbor who has a cattle farm behind us has seen coyotes, and the raccoons haven't been up, either, so I think that's what's up. I miss watching the kits grow, but would rather have them safe. Today a mama 'coon came up with three babies -- tiny ones -- so I threw out some dog food, as it's insufferably hot and mama needs to eat, and I'd prefer that than having them disturbing the bird feeders...If anyone needs a sure-fire recipe for keeping 'coons from digging up their flowers, I found one. You must reapply it after watering or the rain, until they get the idea the pot or patch isn't a good idea...it's far more effective than the expensive pellets, sprays, and liquids I've bought in the past. Though it smells awful, it doesn't overpower the flowers, for some reason.


On to the Texas posting:
the first leg of our trip was to MD Anderson in Houston for the VHL conference.* The medical conference was incredibly well set up. Maybe 50 patients and caretakers were there, and a panel of doctors. Having lived with this for 27 years, I knew most of what they had to say, but I was surprised to learn only 10,000 people have it in the US. (reminded me of the cartoon I liked in The New Yorker -- a woman is in a waiting room and replying to a man beside her that 'her disease is so rare, they don't even have a spokesperson for it'). Also, learned that since I can't handle contrast dye anymore they can do an endoscope of my GI to 'see what those tumors are doing'. Still no luck on the brain or spine, though. My doctors said that at this point, I'd know something was going on, before they'd see it on a scan.

The last hour of the meeting the facilitator, Joyce, who I've known since '92, blindsided me by sticking a microphone in my face and telling the group that I was now going to tell my story. Yikes. I don't mind speaking in public, and I am used to lecturing med students at our local teaching hospital, but I like a little warning. I was shaking so badly I could feel my lips trembling when I was through! Fortunately, Excy is a deft hand at handling the follow-up questions and elaborating when I skim over details. Afterwards Joyce tells the crowd that 'I'm a pioneer who has paved the way so hopefully their cancer journey with VHL will go more smoothly than mine.' I've always dreamed of being a pioneer, just hadn't realized I was...

A few folks come up afterwards to say they thought they had gone through the wringer until they heard my story...I have yet to meet anyone who has had full-blown VHL activity like I've had, but there were so many brave souls in the audience who have undergone a number of surgeries. Talking to other VHL survivors made me feel strangely optimistic and depressed. It was a very long day and after a mojoto and some Mexican food, I fell into bed to get ready to get up early and drive to San Antonio....

* if you don't know what VHL is, google vhl.org