Thursday, July 7, 2011

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

13 comments:

Ms. A said...

There's the reason you don't feel well... HOUSTON! Really hard to recover from that. Hibernate, hydrate and feel better soon. This place can really take it outta you!

Kay Dennison said...

Busy is a good thing -- it's just do tiring!

Thanks for coming by my blog!!!!

mom in rome said...

I would need a huge rest too...breastfeeding my first baby is killing me!!
I could fall asleep everywhere and anytime...

PⒿ @ $ € € ₦$ ₣®0₥... said...

I'm so sorry about your VHL and how poorly you're feeling since you returned from you trip. I'm glad you know to make yourself stop and rest.

Love reading about the foxes (even though they've relocated) and the raccoon babies.

Cinner said...

Sorry your feeling so tired, I have read up on your illness, I had never heard of it before. I do understand about not being able to do things. I pace myself too, but for other reasons. Sending prayers and hopes for better days ahead. hugs.

Arkansas Patti said...

Well "P" wrote my comment and better than I could.
I am so sorry you have been feeling so beat up and I agree that there is a need for a spokesperson for your disease. There is so little press on it and I am sure that effects the efforts to find cures. Your blog has opened my eyes.

ReformingGeek said...

Yes, these heat is getting old. I hope you are feeling better soon.

I'm glad the conference was beneficial, even if your friend put you on the spot. Ahem. SHAME on her!

Retired English Teacher said...

Take the time you need to recover. You have much left in you to give and enjoy. I can only imagine the physical, emotional, and mental drain you experienced by going to the VHL conference. I also can imagine how stressful it was to suddenly be called upon to speak. Take care of yourself.

p.s. I'd say VHL has a spokesperson. It is you. I had never heard of the disease and its devastation before reading you blog. Now, if only there were a cure for families who must deal with this.

I Wonder Wye said...

Thanks to all of you for your insightful and kind comments...blessings to you all...

marciamayo said...

You have still managed to have a rich and rewarding life in spite of the hand you've been dealt.

I'm in awe.

Looking to the Stars said...

Wow, what a beautiful person you are inside and out!
thanks for stopping by my blog :)

I have never heard of your illness, thank you for sharing about it. Knowledge is a powerful thing and thanks to you mine has been expanded.

Sorry you had to miss the party but glad you know your limits. Parties come and go, your strength and energy is more important!

I had to laugh about the yippie doxies. I have 2 mini doxies and I have discovered if I go out & see what they are yipping about, then talk to them (like "oh, yes I see that kitty, hes a pretty one, now leave him alone") then they are happy, shut up and come into the house with me :)

e said...

Get into bed with a mug of tea and don't do anything else until you feel like it. I hope you get the rest you need. I'm not having a stellar day myself, but that is a story for another time. Rest well.

Traci said...

I love Twilight Zone marathons! I once got in a fight with my dad on Thanksgiving (I was 17) because I didn't want to go to my aunt and uncles for Thanksgiving (which was always boring) I wanted to stay home and watch a Twilight Zone marathon.

Yum, deviled eggs. I need to make some soon.

I'm the same way about reading the book before the movie. Which is why I haven't seen Harry Potter yet, because I haven't read the books. They are at the end of a very long list.

The Help is speaking to me. It's quite an emotional book. I have so much that goes through my head when I read it. I think I need a blog post about it but I'm not sure.

You are a pioneer and a hero. I don't think most people who are, think they are. They just do what they need to do, which is what you do and in turn you're a pioneer and a hero. :-)