NIH study

It's absolutely official. I spent ovr an hr on the phone w/ the NIH Tues. We talked about the flight, hotel, transportation, and the fact that I'll be experiencing 31 tests in 4 days. That's ok. I'm still excited.

Sight for Sore Eyes

Good news w/out a definite reason. Over the last month or so, my vision's improved. I did need reading glasses to read the newspaper or books, etc., period. Now, in decent light, I've been reading the paper, doing the crossword, reading books, etc. w/out glasses. Yet, my MRI shows the disease is stable. Seems like the growth would've eased up on  my optic nerves for this to occur. I'm not arguing! But, I am curious.

DONATIONS & GIFT MATCHING

Dear Friend:
This is a wonderful time of year with Thanksgiving and the holiday season just around the corner. The ECD Global Alliance volunteer Board of Directors joins me in saying “Thank You” for your generous contributions and support. Your gifts are making a difference:
 Patient representatives come from 16 countries. We represent the largest group of ECD patients known to exist and allow patients and family members to connect with each other to share their experiences.
 The National Institutes of Health (NIH) has begun a natural history study on Erdheim-Chester Disease to understand the disease and its cause.
 The ECD Global Alliance web site provides information to help physicians, patients and families, including links to descriptions of all known ECD research underway.
 A $50,000 ECD research grant has been funded by the organization to better define the pro-inflammatory microenvironment inside ECD lesions.
 A new $50,000 ECD research grant will be funded in 2012.
 In 2012, research, advocacy and education are the priorities and your contribution and support will make a difference.
This holiday season please make a gift contribution to ECD Global Alliance and consider asking your family and friends to make similar gift contributions. You can make your tax-deductible donation online at www.razoo.com/story/ECD-Global-Alliance or mail your check to:
ECD Global Alliance P.O. Box 775 DeRidder Louisiana 70634
YOUR GIFT WILL BE MATCHED! Thanks to a generous private donation, contributions up to $50,000 will be matched until January 1, 2012. If you donate $50, the Global Alliance will receive $100 thanks to your donation and the matching donation. Please share this giving opportunity with your family & friends. It is a great holiday gift.
Supporting research is crucial to our mission. Your gift funds additional research projects and provides for the ECD Global Alliance to act as the communication conduit between researchers, patients and their families. Thank you for your generous gift.

NIH ECD Study

It is official. I've been accepted into the NIH study, and we'll fly out 1/15/12. The poking & prodding will begin Monday morning. I'll be getting bone scans, PET scans, CT scans, blood work, a stress test and even see a physical therapist for advice about exercises to improve my balance. That's just a taste of where they're going to take a peak. We're really excited and plan to also make a mini-moon out of a couple of the days. The Dr. has warned me that come Fri., I will be very tired. I'll get over it for time w/ my bride, though.

Love and Support, Very Important.

My wife juggled some things and figured out a way to get tickets to the Third Day concert this last w/e. It was one heck of a show. We were able to get our minds off of Dr.'s visits, MRI's, Interferon, Fentanyl, Life expectancy, etc. and relax together and enjoy some great music, sang ourselves horse, and joyously praised God. She even got CD's and a sexy T-shirt (for her) figured into the budget. We hadn't been together like that for a while, and it was absolutely great. I love my wife w/ a passion! I am a very blessed man. She knew I wanted to see this show badly. She loves me. She did what it took. I lead a very blessed life.
Thank You, Lord.

No News Is Good News, I Guess.

Well, it's been almost a week, and I haven't heard anything from the oncologist. So, I reckon I'm in the clear. I'd like to know what's up w/ my arm, though. It'd be nice to find a pain killer that works, too.

MRI nap time

I've had an unexplained pain for about the last month or so. It started under my scapula feeling like a muscle strain. So, I tried a heating pad, Aspercreme, Ibuprofen, warm showers, etc.. Nothing has helped.
So, I called my oncologist Thursday for a prescrip refill and posed a question about the pain. Well, guess who's going in for an MRI of his shoulder and upper arm. It's possible the disease has become active and begun spreading down my arm. Boy! One thing after another.
But, at least we're going to see Third Day at Biltmore toward the end of this month. They sing one of the songs, "Mountain of God", that reminds me of the day I was diagnosed, and we sat in the exam room holding each other and crying. "We must go thru the valley to stand upon the mountain of God". His strength thru our weakness.
Which reminds me. I've been writing like crazy lately. I think He's feeding me some pretty good stuff, too. Claim Me, Let Me Shine, Better Man, Thanks, You Spoke are some of the titles. I even have melodies for a couple. I sure miss those callouses. I have to build them up all over, again. I'll be working on both the callouses and the tunes.

A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

Finally got this published to inform the public a bit. A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

Finally got this published to inform the public a bit. A rare disease leaves man feeling blessed - Walter W. Comer - The Mountaineer

Life?!!

Don't worry. I'm not gonna go and do anything stupid or selfish. But, the road's end is beginning to look better all the time. I'm sick of feeling like a problem. I didn't ask for this damn disease, the meds or the side effects. But, it's looking like my trying to be responsible, honest and not risk a child's life is going to come close to ending our marriage, if not outright end it. If I'd croak it would solve many problems that exist in our life. If it wouldn't put me on the outs w/ God, whom I deeply love & do NOT want to disappoint, I could just stop Interferon and Testim. It wouldn't be any fun. The disease, however, would just do its job and get rid of one mouth to feed. I'm still here, though. So, God must still have work for me. That's ok. HE knows best.:-)
Yes. I still smile, enjoy warm, sunny days and time w/ my bud, "Curry".

Meds!!!

I find myself getting rather tired of the side effects of meds, especially Fentanyl, changing up on me. Changed my patch 2 days ago. Was really tired all of yesterday, my wife's day off :{. Got a good night's sleep last night and was still just as tired most of today. I'm very thankful for the aid my prescrips have offered over these yrs. But, I'll tell ya. I wish they'd find a better painkiller to wean me onto.
Found out at my last Oncologist's visit that Fentanyl is NOT the reason I've had a hard time controlling my emotions. Turns out it's actually the Interferon. But, MAN!!, if a show is touching or remotely sad, or if someone talks to me about a difficult time in their life, it is extremely difficult to hold back the waterworks!! Can get just a tad embarrassing!

MRI Time, Again

An MRI done in early May came back showing the pituitary growth is stable.
May 29, I reached 50. The docs didn't think I'd reach 49, maybe even 48. So, my wonderful bride threw a B-day blow-out for me. She's so great, and I'm so blessed. It was a celebration of life more than my B-day. But, I plan to see at least 75.
I think there are photos on her Facebook page (Kristine Comer).

Article

A friend from church brought me four possible publications to which I might submit the article. I'll have to mold it a bit differently for each mag/site. But, I have someplace to shoot for, now.

Endocrinologist visit and ECD article

The Endocrinologist was very pleased with my condition. He agreed that, after seeing my images in 2007, that he didn't think I'd live this long. They just don't understand how stubborn I am. :-)
Finished the article I've been working on. Folks like it. Hopefully I can get a magazine interested.

The Oncologist

The Oncologist was quite happy w/ how I'm doing. He's pretty impressed w/ my getting 90-100 hrs 13 of the last 14 patches (The one that was less was 89 hrs). But, we're not going to mess w/ anything new. He and I figure, why mess w/ a med that's working so well.
I've begun having pretty rough back aches, w/ no apparent cause, just below my mid-back. They started in my sleep Mon. or Tues. night and made breathing painful. The gels & creams do nothing. An hour or so w/ a heating pad eases or relieves them. Doc said not to worry unless they continue for an extended period (Folks have been paralyzed by ECD involvement around their spine/vertebrae). They have continued. But, I'm going to wait a month before calling him back about 'em. I'm going in May 11th for an MRI of the brain, anyway.
He also said not to worry about ECD in my jaw unless I begin having unusual pain in that area.

Long Time

Well, Christmas went very nicely. I didn't have any bad episodes, and my wife and I enjoyed a relaxed family Holiday very much.
I do find that the drive back to my wife's and my home after such a trip leaves me absolutely exhausted for several days. Could be the schedule change, the excitement, the expectation. Who knows? But, aside from being bothersome, it's no biggie. I recover from those after few days, and I'm the same old me, again.
I have ever improving news about my Fentanyl patch. I've moved to 96 hrs on a 72 hr patch w/ no big problems. As I approach the 96th hr, I get fairly sleepy. Other than that, I pull off 4 days w/out a hitch. That also means a 30 day prescription lasts pretty close to 40 days. Saves a little moolah over time. :-)