Just a request.

[walter32799]

Got a call from Heath Shulers' office again today. The lady there wanted to know the name of the manufacturer, plus a little more info. Simple enough. Just key in "Cladribine" and "manufacturer", right? Oh, No! Trying it that way took me in all kinds of circles.
I finally tried an address listed below a site and fell into Selleck. After hours of searching, that was my site.
Yeah. I coulda called my pharmacy or Oncologist. But, I just was NOT going to let "Progress" beat me. It didn't either .

[anne]

I saw this today and thought of everyone who has to deal with our own "special" things Walter.
It is from the poem Invictus by William Ernest Henley - written in 1875. He had Potts Disease at 12 and had to have his leg amputated later on as a result.
The line that sticks out in my mind is below:
...
I thank whatever gods may be
For my unconquerable soul.

I think you will be able to relate to that Walter. I'm glad to see you here fighting!

[walter32799]

Thank You, Anne.
God most certainly blessed me with an "unconquerable soul". Since my wife and I decided this disease was NOT going to win, I've had my down days. But, I've found it easier and easier to pick myself up and keep going. The Spirit inside is much stronger than I ever dreamed, and I find myself smiling even thru the worst of those days.

[walter32799]

I down loaded and printed the application for assistance thru Johnson & Johnson this AM. I should be able to get it in the mail to my doc in a day or two. But, that means I'm actually gonna start Cladribine (Leustatin). A warning comes w/ this med for a person not to expose themselves to anyone w/ an infection, bacteria or illness of any sort. Now, aside from being as careful as I can be, how do I do that? My wife's an RN in a long term care facility. There's no telling, w/ contact w/ residents and family, what she might bring home.
Then again, w/ a little one possibly on the way, I want to be the best Dad I can. So, I guess it's tough choice time. Raise a kid riding drugs that keep me off kilter, or risk dying trying to get off those, or at least most of those, drugs. I know the answer. It's just scary.
Well, I trust God, and this is in His hands. I'll make sure of that.

[walter32799]

Well, the clinic in Johnson City called Friday and said we're not pregnant. It hit me much harder than I thought it was going to. My first idea was to do this for my wife. She wants a baby so badly. But, as the days have passed, I've found it difficult to see men w/ their children or parents w/ young ones. I guess I liked the idea of being a Dad more than I even let myself know.
I'm still going ahead w/ the form and, hopefully, the treatment.

[walter32799]

Had a visit w/ my Endocrinologist today. Aside from being worried about my Testosterone, since we hadn't tested my blood levels in over a year, he was very pleased w/ my condition. He got a good report from my Oncologist to tell me about. He is also working on my being able to get the hormone replacement gel cheaper. Currently, that knocks us back about $350 every time we get a refill. Sheesh!! No wonder those exec.'s drive Mercedes, Lambourghinis (sp?), etc..

[walter32799]

My Endocrinologist's office called this AM. Seems my Testosterone levels are low, and he wants me to increase the hormone gel from 3x per wk to 5x. The only worry I have about this is my poor prostate. One of the biggest side effects w/ this drug is an enlarged P gland, and I did have that problem on the previous, one tube a day, dosage.
Oh, well. I reckon I'm just gonna have to increase my Saw Palmetto consumption. It really does work, too .

[mojobone]

I'm glad you're still with us, Walt; I jes' want you to know we're still with you.

[walter32799]

Thanks, Mojo.
You guys have been one of my greatest support systems on a constant basis, and I really appreciate it. People praying for and thinking of me help strengthen my determination that this stuff will not win .

[walter32799]

Per my Pastor's request, I performed a song in church this AM. I chose the one that's going to be imbedded at the erdheim-chester.org site, "Best of All". It's metaphorically about God's being right with us, especially from the most frightening moment (diagnosis) 'til now, the worst days to the best. The chorus finishes w/, "Best of all, I feel Your arms around me".
It had been a long time since I'd been on stage for those folks, and it showed. I was a touch rusty. But, I did okay. Afterward, they gave me the warmest round of applause. Then, after our Pastor said something about all my wife & I have been thru, and that he hoped they'd be hearing more from me soon, they did it, again.
Now, I'm very skeptical and critical of myself when it comes to guitar and voice. This, though, felt very genuine. Got lots of hugs, handshakes and requests to perform again soon. I felt like they'd really missed me.
I'm not bragging. I would only do that about my looks and muscular physique . It sure did my heart good to feel that loved, though.