Just a request.

[walter529]

End of Oct., Beginning of Nov. we went to San Diego for the 1st global ECD Conf. & Family Gathering. It was wonderful 2 meet folks I've been chatting w/, & who've been supporting me since '07. Learned lots from docs abt progress & a relatively new med, vemurafenib, that's had some success as far as trtmnt. We're bak & talkin' it up!

[walter529]

Hope the holidays were great for all. Wonderful here!!
Well, the loss of balance & falling continues. I've messed up a shoulder, right calf & now my left foot. That happened in the last coupla wks. I was sleepy (BAD news for my balance) & had been down stairs. Coming UP stairs is kinda weird for me. THAT"S when I hafta watch it. Anyway, I fought the upstairs & headed into the kitchen. I've noticed I have a weird tip forward now, like when I'm standing still peeling fruit or washing dishes. So, I come upstairs & head toward the kitchen. I get this forward tip that's WAY off, I grabbed the counter HARD to try & catch myself (Actually left a coupla blood blisters on my 2 mid fingers, right hand), twisted & fell on my back. That's fine. But, somewhere in the twist I really pulled the outer muscles in my left foot. GREAT!! Now, I got a screwed up right leg & left foot. My right shoulder is messed up so that a cane is very painful. Trying to limp on two bad legs/feet is a trick.
I beat the odds getting this disease, fighting it, yrs expected to live beyond diagnosis, then beat the odds getting one leg, one foot & one shoulder injured, not to mention developing & beating vertigo, outlast the avg marriage (we're comin' up on 15 yrs )...and we haven't won the lottery?!! GEEZ!!! (Erdheim-Chester.org ).

[walter529]

Gee, I take long breaks!
We've now discovered, thru an MRI, that I actually have arthritis in my right shoulder. I can live w/ that. I just have to remember to play thru the pain, not give in to it. Can't let Arthur win!
A while ago, 3-4 mo.s, my vision went double. That bout w/ vertigo really messed me up. So, I now have prescription (prism) glasses on the way. One more thing I can't afford to forget to remember!
We're trying to get back to the NIH in Bethesda. I needed to get a biopsy to discover if I have a B-RAF gene that we ECD-ers often seem to have. It determines a possible future treatment if interferon stops working, Vemurafenib. That biopsy, from last Fall, obtained no diseased tissue. Go figure! So, I hope to go to an ECD conference, meet some chat room buds and stay for another round of testing w/ docs who can get a proper biopsy. They've had quite a bit of success w/ Vemurafenib. So, this info is important. Main problem is, this all takes about 9 days. My bride loves her new job, and I don't want to lose it for her. 2nd problem: Whatta we do w/ our buddy Benji for that length of time? Boarding's outta the question. Small dog syndrome. Maybe we'll have family vacation up here . WNC is gorgeous year 'round.

[Passionaterocks2]

Things aren't always what they seem to be. Know that you have prayers being sent to you from Georgia Passionate Rocks.
Healing in the wings for you Walter.
Be at peace , this storm will pass.
Things are not what they seem to be. Treatment will go well and you will have a good report.

[walter529]

Passion, I know things will go well. God's been w/ us the whole time. Can't miss w/ Him on our side.I do wish He'd give me a nudge in the direction I'm pretty sure He wants me to go. I got the idea to do local speaking engagements to help those who'd gotten a scary diagnosis, using our experience. I don't want to make any $$. I just want to reach out and help folks deal.
But, I've had 2 chances since '07, and one of those at our church. I just want to help, since I've been there! That's okay. All things in good (His) time. I may be wrong. He's used me well right here where I can talk to the whole world. There are bunches out of billions of people who have gotten the daylights scared out of 'em w/ a frightening word from the doc. Sitting here, I don't have to bug my bride for a ride, since I dare not drive much any more.

[walter529]

Picked up my new prescrip. glasses and, MAN!!, I can see. I know now we do actually have one dog, not two . I tried them on at the eye guy's place, and I was shocked. It's taking some getting used to. Never had prescrip.'s before. But, I like that my eyes work, again.

[themichaelscott]

Hi Walter,

If getting to the speaking engagements is an issue you might talk to the American Cancer Society. I'm a radiation therapist and the ACS provides a free ride service for some of our patients. You might ask if they could help you out or what they need help with. Most towns also have support groups where you could lend your support and experiences. From my experience (professionally and when my wife had biopsies), fear and anxiety of the unknown is the worst part.

I had a new patient start today that took 30 minutes just to feel comfortable getting on the treatment table. There is usually nothing I can say to break through the anxiety. Sometimes I think this is because I'm an employee so they think it's just my job to say "you can do it!" But radiation oncology waiting rooms are a support group in themselves. There is nothing like first hand experience.

I hope you find something that works for you.

Michael

[walter529]

Thanks, Michael. I will see what's available.

[walter529]

Hi, all, & Happy Fourth.
My new glasses are doing quite well. It's weird how being able to see has thrown me off balance a bit. I'll get used to it.
As a show of appreciation for those in our armed forces who keep us free and those who've died defending our country, I dedicate "In America", which I wrote & got a rough recording of before Casey Hurowitz worked magic on it, to show them how very grateful I am for their sacrifice. Casey here on Taxi did the publishing for me. I maintain hopes that it will be picked up by an artist so I can pay him back. They did an A #1 job.
God bless those in harms way for our sakes.
<a href='http://www.showcaseyourmusic.com/walter327'>Walter

[DanLuedke]

Inspiring song, Walter! Happy 4th and good luck with the new glasses!