Good Intentions

NIH, Erdheim-Chester Disease

2012-01-13T15:53:00.000-08:00

I spent another hour or so on the phone w/ the NIH yesterday being given directions, instructions, short cuts, etc.. This must be a very big facility. I can hardly wait to get there, experience it and meet all these great people. We leave 4 Columbia tomorrow, & fly out Sunday. Keep us in ur prayers.

NIH study

2011-12-06T15:51:00.001-08:00

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

2011-11-24T18:51:00.001-08:00

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

2011-11-14T17:29:00.000-08:00

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

2011-11-14T17:12:00.000-08:00

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.

2011-09-28T22:39:00.000-07:00

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.

2011-09-19T13:21:00.000-07:00

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

2011-09-10T18:22:00.000-07:00

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

2011-09-07T13:28:00.000-07:00

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

2011-09-07T13:27:00.000-07:00

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

Life?!!

2011-08-14T17:12:00.000-07:00

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!!!

2011-06-24T16:35:00.000-07:00

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

2011-06-09T19:31:00.000-07:00

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

2011-03-16T18:00:00.000-07:00

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

2011-03-01T21:25:00.000-08:00

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

2011-02-04T18:09:00.000-08:00

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

2011-01-21T17:56:00.000-08:00

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. :-)

Possible Transportation

2010-11-27T14:37:00.000-08:00

Less than a wk. after My Ophthalmologist's advice not to drive if there's any question about my vision, I found an agency that offers transportation to folks on Medicare. There's a $2 charge for in-town trips. But, the great thing is they'll take me to Asheville for a $12 round trip fee. That's a load off of my mind. At present, my wife either has to take me to the docs and rush to prep. for work after or, she has to get up on her day off and drive when she might not feel like it. That's happened enough that I've really begun to feel like a burden.
Don't know if my wife will go for the $12. Depends on how precious her day off and "me" time is.
Funny thing is, I once worked for this agency.

Day of the Oncologist

2010-11-18T17:31:00.000-08:00

Wed. was my day for an Oncologist visit. He had no idea what might have caused my stirring sensation a couple of weeks ago. He did say he wanted to continue with the MRI and CAT scans every 6 months to keep tabs on me. The latest MRI showed that I remain stable. Good word, Stable. :-)

Eye Guy

2010-11-04T11:00:00.000-07:00

Had an appt. with my Ophthalmologist Monday. Man, I hate having my eyes dialated! I was a little tired, which affects my vision more, now. So, I think I was a little off my usual impressiveness :-). It was the way he said "You're in the normal range". But, he was not alarmed. In 6 mo.'s I get to enjoy dialation, again. They're also going to check my optic nerve then. This is so much fun.
The news was good enough that my wife and I went to TGI Fridays for a nice lunch. Had the Santa Fe salad w/out Ranch dressing. Had the balsam Vinegarette instead. Was quite tasty!

Insurance and MRI

2010-10-24T22:10:00.000-07:00

My MRI results apparently show some thickening of tissue in my "Cavernous Sinuses", under and behind the brain I think. I'll find out exactly what that means Nov. 17, my next Oncologist's appt..
Since my Drug coverage is being cancelled, per CIGNA, we had to talk to my agent about new ins.. Well, wonderfully, I've found that, to be covered, we not only have to pay the standard charge for Medicare coverage, which does basically nothing, we now have to pay $154 for supplemental health and another $34 for drug coverage. Both monthly.
With our outgo and this new extra cost, I just don't get how we're supposed to get by. I'm looking for some work I can do on my meds. But, that's difficult w/ the side effects considered, and I cost a good deal of bucks and worry for my bride.
I'm beginning to have thoughts that she'd, in time, be better off w/out me. She could find someone w/out this stupid disease, who worked, added an income to the home and didn't cost a fortune in meds and dr.'s appt.'s to "maintain".
No. I'm not going to do anything stupid. My poor gal has been thru hell due to my presence in her life. Just seems like my absence would become a relief. Then again, there's nothing like loving her or being loved. Think I'll stick around. :-)

Me and My Big Mouth

2010-10-07T18:51:00.000-07:00

Well, thanks to my big mouth ( I called my doc just in case Tues. was a warning sign), I'm back for an MRI Tues.. Man, I'm getting tired of being the money siphon in our household. Sometimes I honestly wonder if my wife wouldn't be better off if I took the ascending elevator home. But, that's silly. I'd want to take care of her if she were sick, and I wouldn't love her any less. I'd be lost if she was taken from me, too.

Blue "Tuesday"?

2010-10-06T12:36:00.000-07:00

I had a very strange day yesterday, Tuesday. I awoke w/ the feeling that someone had their finger in my head stirring my brains rather vigorously. I'd had an injection that morning. But, Interferon rarely bothers me any more, thank goodness. I had changed my Fentanyl patch around 12:30 am on Monday. That's more than enough time to adjust to that, though. I spent the day off balance, w/ shaky vision, tired, forgetful and w/ that stirring feeling in my head.
Adding to that, at about 8:45 pm, I glanced at the clock and realized our Small Group would be letting out in 15 minutes. I forgot group!! Dang it! Probably best, though. Feeling like I did and having shaky vision at best, it probably wouldn't have been very responsible to get behind the wheel and maneuver those winding, dark, country, mountain roads. It'd be a nasty surprise for my wife if I came home dead or in cuffs (I'm sure Fentanyl in my blood would constitute DWI). Thankfully, today is a different day, and I'm feeling a bit better :-).

Ministry and/or Small Group

2010-09-05T14:47:00.000-07:00

I talked to our Pastor about using my experience w/ ECD as a ministry and/or Small Group to encourage others who've gotten, or may in the future get a frightening diagnosis. He liked the idea.
Right now, he sees it as a ministry for the ill. Well, I sure don't want a congregation member to get sick. I'm looking for Christian books on the subject. I think a Small Group will equip folks (victim and caregiver) to deal w/ the unexpected experiences; ie, cancer, Parkinson's, Alzheimer's, in life.
I seek to help them see that God is not inflicting them, that denying sickness a grip on their life can actually help lengthen it and that there is still life to enjoy. I want to help them see that there are others, loved ones, who are going through this difficult time, as well. These folks deserve to see a fight, not to watch this person they love just give up and leave them behind.

Herbs and Supplements Do Help. Not sure about Hemp. Tee-hee.

2010-08-21T16:09:00.000-07:00

I take a number of herbs and supplements for several reasons. This, though, is not my advice for others. I'm not a doctor and can't give such advice (Better safe than sorry).
Fish Oil, 1000 mg 2x/day- Good for the heart and I heard somewhere it helps protect the brain. Since one growth is around my pituitary, down around my carotids and back up into my orbits, I figure it can't hurt to take precautions. More info at http://www.realage.com/tips/choose-this-protein-for-more-mental-power?eid=8275 .
Ester-C, 1000 mg 1x/day- Boosts the immune system. Seems to help w/ drug side effects. Since Interferon causes Flu-like symptoms, kinda makes sense.
A good Multi-Vitamin, just to help w/ what the body might not get w/ my ever changing diet.
Saw Palmetto, 320 mg 2x/day-Since I use a Testosterone replacement gel, which enlarges the prostate, I use this for urinary and prostate health. It was advised by my doctor.
Folic Acid, 400 mcg 1x/day-Helps w/ energy level and cell production, such as in the stomach. W/ my meds and side effects taken into consideration, helping maintain the stomach's health seems a good idea. I eat lots of fruits, veggies and salmon. I want to make sure my body gains full benefit from these.
Magnesium, 250 mg 1x/day-Stronger, addictive pain killers can cause the water levels in the intestines to decrease, causing constipation. Magnesium helps the intestines to remain hydrated.
Vitamin D w/ D-3, 1000 I.U. 1x/day-Since D is vital for proper calcium absorption, and I have heavy xanthum involvement in my lower fibias and tibias, I figure doing all I can for my bone health is a good thing. Plus, it helps w/ any inflammation I may experience, thus, less pain.
Calcium w/ Magnesium & Zinc, Cal.-600+mg, Magn.-250+ mg, Zinc-10-15 mg in 2-3 tablets/day-My Endocrinologist found my Calcium levels to be low and recommended a supplement. The extra Magnesium, I figured, couldn't hurt, since I'm on Fentanyl.
Since Zinc's involved in eye health, and I have growth in both orbits, I take this as a kind of insurance policy for my vision.
Silicea terra, 6 pellets 1x/day-I've noticed an unusual body odor this Summer. This Cell Salt, recommended by a health food store, seems to have remedied this problem.
I, also, try to drink six or more ounces of hot organic green tea on my scheduled Interferon injection days. This seems to have helped w/ the remaining side effects since my body grew accustomed to the drug.

*This regimen works for me. Before anyone else begins such a routine, their doctors should be consulted and their advice followed.*

Z's becoming a too familiar letter!!

2010-08-03T13:33:00.000-07:00

Several times in the past few wks, my wife's actually checked on me to make sure I was still breathing. We normally hit the hay betw. 1 & 2 AM. So, I normally awake betw. 9 & 10.
Well, these times I'm talking of, I've slept 'til nearly noon or beyond. That's when my bride wakes me to make sure I'm ok. So, w/out her concern, who knows how long I'd have been doin' Z's.
I'm assuming it's the Fentanyl. But, why so erratic?
Not to mention, I'm missing "Rachael Ray"! ;-)

Good News in the Mailbox

2010-08-01T12:42:00.000-07:00

Received a very nice surprise in the mail Saturday. It was a reply from Johnson & Johnson about my application for assistance w/ Leustatin (Cladribine). I do qualify!!! Yay!!
It came w/ a form my Oncologist needs to fill out, though. Why not send it to him and save a step?! Ah, well. I got an SASE ready and mailed the package of to him.
...And the journey takes another step.

Med Sleep

2010-07-30T07:47:00.000-07:00

Geez!! The meds I'm on sure make me sensitive to zzz's. If I don't sleep for at least 8.5 hrs, 9-10's more like it, I just have the hardest time functioning, organizing my thoughts, etc..
Our dog was startled by a falling object last night. He's a Yorkie. So, he's a tad high strung anyway. For a 1/2-1 hr he continued to sporadically bark at, what turned out to be, a curtain rod.
I appreciate his alertness to the unusual. But, I'm an absolute zombie this AM. Thankfully, other than Testosterone gel, no meds today.

New Study

2010-07-26T11:32:00.000-07:00

Learned of a possible new ECD study. They'll be looking more at the history and progression of the disease in order to discover better treatments and a possible cure.
It's being carried out by the National Health Institute in Bethesda, MD, and travel, food and lodging will be paid by the NHI for each US patient. So, guess I'm going to Maryland late this year or early next. :-)

Road to a Bigger Prostate :-)

2010-07-09T16:20:00.000-07:00

Well, it seems my testosterone levels are low, and my Endocrinologist wants me to move up to 5 tubes of hormone replacement gel a week. Fine by me w/ one exception, the worst side effect w/ this stuff is an enlarged prostate.
Well, at least Saw Palmetto really does work for that. I'll just be taking a little more than the reccomended daily allowance.

Endocrinologists Point of View

2010-07-08T12:05:00.000-07:00

Had the priveledge of visiting my Endocrinologist Tuesday. He was very pleased w/ the reports he's been getting from my Oncologist. He was also very pleased w/ my current condition. Supportive he is of my interest in Cladribine ( little break in the "He was" theme :-) ). There was talk of increasing the hormone gel one more tube a week. But, that's, of course, depending on the results of my labs.
It really tickles me how I've, pretty much, done nothing but improve since that day, almost 3 yrs ago, God had a long talk w/ me. I put things in His hands that day, and the rest is recorded right here in cyber space. :-)

Lapse in Memory

2010-07-02T08:54:00.000-07:00

As I wrote in my other blog, "What's Their Problem", I'm confronted w/ a new "problem". I've received the forms to complete for assistance from Johnson & Johnson where the Cladribine (Leustatin) is concerned. This both frightens & excites me.
It frightens me because the drug comes w/ a warning for the patient not to be exposed to anyone w/ a contagious illness, because the infusion lowers the blood count. Thus, the immune system is pretty severely compromised.
So, I could die due to a side effect of the med. Hard to be an influential father as ashes in a jar. But, what kind of Dad will I be w/ my head not screwed on straight and my balance not so good, thanks to some of the meds I'm on now. I've been really torn about this.
Well, it's funny how God reminds me in His Word what I'm missing. I was reading Billy Graham's book, "The Journey", this morning and, what should come up the AM after my "Doubt and Fear" entry but, "Conquering Our Fears". Within four sentences, I had my fear eased. Dr. Graham wrote, "The opposite of fear is trust-trust in God and His unchanging love". There is also Psalm 118:6, "The Lord is with me; I will not be afraid".
Once again, I was worried, afraid and in tears w/out talking to the One Who knows me best and knows what's best for me.
I'll finish the application process, and the rest is in His Hands.

Progress?!

2010-06-28T20:17:00.000-07:00

Heath Shulers' office called again today. ,She needs a bit more info before she can put pressure on the insurance co. to cover Cladribine (Leustatin). One thing she needs is the manufacturer. Peace-o-cake, right? Wrong!! I keyed in "Cladribine Manufacturer", "Pharmaceutical maker of Cladribine", "Maker of Cladribine", even "I need to know what pharmaceutical company manufactures Cladribine", among other queries. But, each led me in the same circle of side effects, chemical structure, side effects. My scream of frustration could be heard by canine ears only.
I finally, after hours, tried a web address below the site link. Voila! There was all I needed at the Selleckchem site. This after I called my doc's assistant, gave her the name, number and info needed at Rep. Shuler's office.
Well, we at least got a connection established betw. our Rep.'s office and my Oncologist's. :-)
And, "progress" didn't beat me. This computer just doesn't realize how determined I can be. Go ahead! Mess with me! >:-/

Image Results

2010-06-24T21:41:00.000-07:00

Got the report back on my images. Doc says the disease seems stable, if not improved. They did find some Sclerotic growth on my spine. Apparently that's just a sign of age. Only problem is, I ain't old. I'm still 27, right?
Got my paper work, all my reports, from my doc. They go way back to around 2002 or so. I'd forgotten a bunch of that stuff. They are, however, all packaged and on their way to his office. Only problem I see is, since my image report is so good, they may see no need for Cladribine.
Ah!! Whatever. God knows what He's doing. :-)

Rising Blood Pressure

2010-06-19T19:16:00.000-07:00

Went in for the MRI & CT scan Thursday. Was there at about 1:50 PM and went back to financial rather quickly. That's where they told me my co-pay would be about $78 more than I had been quoted earlier that morning. Apparently they had not taken the CT into acct.
Then I was called back to the Radiology waiting area. Well, they had a battle w/ Medicare. They said the CT scans wouldn't help me. Now, that's a ridiculous statement. CT scans are a diagnostic tool, not a treatment.
It took about another hour. But, I was finally taken to the MRI machine at 3:30. I had a 2:30 appt. That's the lengthiest period of time I've ever been in that imager. I was in there for 45 minutes to an hour.
Then they hauled me out for the CT scan. But, I had to drink more Barium first, because the process so far had taken too long. I did get into the CT room quickly, though. Got the fun, lung burning, bladder warming dye. Then Got in the machine and that was done pretty quickly.
After fasting since 11 PM the night before, I climbed into my truck at 5:30 PM. A 3 1/2 hr visit w/ an 18 1/2 hr fast thrown in.
I did feel I had earned a treat after all this. So, I hauled it to Hardees to try their new Chicken Tenders. Boy! Those things were good. :-)
It felt really good to walk through the door when I got home!

Relieving News

2010-06-16T15:26:00.000-07:00

Got a wonderful phone call from my Oncologists office yesterday. Seems I qualify for assistance w/ my Interferon. After I use the six month supply on hand, I won't have to pay for that any More. That's pretty close to $300 back in the old bank acct. :-)

Busy Day

2010-06-15T18:39:00.000-07:00

Well, I'm set to have an MRI and CT scan Friday. My paperwork for my State Rep. is on the way. My wife and I head to Johnson City for the embryos Monday, scheduled for 11:30. All this, and I had to go back out and pick up my barium milkshakes. Topped off a day started at my wife's doc, and I don't know how many phone calls. STILL didn't get everything done. AAAAAAAAAEEEEEEYYYYYY!!!!

Images anew

2010-06-14T19:05:00.000-07:00

Well, got the news that I am to have an MRI of the brain done Wednesday, 6/17 and a CT scan of the upper torso 6/18. Only one problem. I have to reschedule the one on the 18th. I didn't catch that I have a physical at 8:30 AM. The CT scan is set for 9:00. I think I'm about to tick a Physician's assistant off.

Worries vs Determination, Hmmmm

2010-06-12T14:54:00.000-07:00

Well, I learned today that if I begin Cladribine treatments, I have to stop Interferon for a period. That worries me, because if the Cladribine doesn't work and the growths start again, can we get them stopped a second time? I wonder, too, how my body will react returning to Interferon after having a low blood count. It was difficult to adjust to with a healthy body.
I'm still willing and determined. But, wrestling with these new frets is troublesome.
I, also, have a new "experience". For about 5 months now, I've been having arm pain in my Humeri(?), Humeruses(?), bicep area of both arms any way.:-/ I like to do push-ups during my walks, and it became difficult when, suddenly, this pain started. I did nothing to cause an injury. There are spots in each shoulder which show up on a bone scan I had done in 2007. I wonder if the growth there hasn't progressed. I figured it would be rather stupid to take the chance. So, my doc is scheduling a full body bone scan and MRI of what brain I've got left ;-). We shall see what we shall see! I just need to focus on the fact that God knows what's best because He can see the BIG picture. I trust He knows exactly what He's doing, and I don't argue (He's bigger and stronger than me) :-).

Cladribine: Insurance Co.'s! Geez!!

2010-06-10T14:10:00.000-07:00

Well, the first news on the Cladribine is that, because it is an experimental drug, it isn't covered. Since less than 350 people have been diagnosed with ECD in 80 yr.'s, any drug they use to treat it is "experimental".
So, I've contacted a local paper and NC's state Rep. The paper had me write an editorial for starters, and Heath Shuler has called me and sent an authorization form for info about me from other agencies. I just need to determine what documents I have that might be useful in helping his office understand my case. I think I've got some pretty good ideas.

Cladribine: Chpt. II

2010-05-27T21:15:00.000-07:00

Got a nice list of sites from Drugs.com and some great ideas brainstorming w/ a friend of mine. Time to get to work.

Cladribine: The Battle Begins.

2010-05-22T14:55:00.000-07:00

My Oncologist said I'm doing great and was very pleased to hear that my vision has remained good, if not improved.
We discussed Cladribine, and he agrees with me that we should try it. He does believe we're going to have trouble convincing the insurance co. to cover it. The drug isn't exactly available at the discount store. It must be infused at a hospital, and one last draw back, I have to sign a release. It lowers the blood count. So, I could die of an infection. Yeehaw!!!
We did put in for it through their computer. They said it shouldn't take very long for a reply.
I've already begun looking for assistance from the pharmaceutical co.'s.
I have confidence all will be fine :-).

A Little More Info. and......

2010-05-19T10:30:00.000-07:00

Well, they didn't tell me that the price they quoted was for a 6 month supply! We found out when I received my shipment yesterday. It's $1700 regardless. But, we feel....better. Hope the rise in Blood Pressures didn't do any permanent damage :-).

My taxes paid for me to Pay THIS

2010-05-17T14:03:00.000-07:00

We found out from Cigna today that my Interferon is ready to be shipped out. Our Co-Pay for having a disease I didn't exactly beg for? $1076.13!!! FOR ONE STINKIN' MONTH!!!!!!
How do the insurance exec's live with themselves? And, how is this legal? Oh! The right lobbyist, the right politician, the right price. I forgot.

Hmm. I thought that all along

2010-05-17T10:25:00.000-07:00

I read an article in the local paper this morning about a study showing a link between Attention Deficit Disorders and pesticides used on fruits and vegetables. Ya know, I've been saying for a long time now that consuming foods that have pesticides, parasiticides, nematocides, not to mention artificial growth hormones, etc on/in them can't be good for humans. I mean, getting something in our bodies that kills living organisms? What are we? Duh! And, does the growth hormone know to rule us out
I do realize these products, by the time they reach us, are in small amt.'s. But, if we start putting these things in our bodies when we're children, and they don't all get eliminated from our bodies from the start, what happens when they add up in 30+ yrs.? Cancer? Downs Syndrome? Erdheim-Chester Disease (had to throw that in)? These things are not among those God intended for us to consume, and there's been a rise in the disease rate over the yrs. Hmm!
Yes. I realize that there are six billion plus people on this planet to feed. I also know that farmers are really painted into a corner trying to produce enough for the population, and that problem is compounded when pests, diseases, fungi, etc. are thrown in to the mix, not to mention waiting a couple or more yrs. for animals to grow to maturity.
I'm not saying I've got the answers. I have noticed how much healthier I am since I began eating as much "organic" as we can afford, though.
It's a huge, difficult problem. But, there's got to be a better way.
By the by, if you want to put me to the test, eat an organic egg and compare it to a regular egg. Try organic milk, then regular milk. My wife and I have noticed that organic milk can be kept and consumed quite a ways beyond its expiration date. Try that w/ regular milk.

Blogger Buzz: Blogger integrates with Amazon Associates

2010-05-16T15:43:00.000-07:00

Blogger Buzz: Blogger integrates with Amazon Associates

Judgement on Cladribine

2010-05-14T13:49:00.000-07:00

Well, I'll hear the verdict on Cladribine Thursday. Got an appt. w/ my Oncologist. Provided the possibilities are good, I just hope the insurance co. >:-( doesn't get in the way.
AND, since we don't need healthcare reform (ya know, it bein' Socialist and all), I wonder what a life is worth to a lobbyist and how much that would change if it were their life. It blows my mind how a persons conscience can allow them to choose such an occupation!

Headaches

2010-05-09T22:16:00.000-07:00

Hope it's not a problem. But, I've had headaches for the last seven days. Not bad. Just irritating and right over my eyes to the middle of the top of my forehead. It's probably just the pollen. It would be stupid, though, to leave them out of my next update w/ my doc, huh?
Took my bride to "The Chef's Table" for brunch after church for Mother's Day. She had the "Low Country Benedict" w/ shrimp and a grit cake. I've had it before. Mmm-mmm!! I had the Bacon, Cheddar and Tomato Quiche w/ Quesadilla soup. We left very satisfied as usual.
Oh! And Curry gave her a cute Mother's day card :-).

MARS?!!!!

2010-05-04T21:58:00.000-07:00

I don't know where this one should go. But, I have to say something.
Scientists are looking into Terra Forming Mars! We've worked really hard at being irresponsible with this planet and have done a good job. People treat Earth like it's disposable. When this planet is used up, we just go to K-mart and buy another one, Right? That shows how thoughtless humans are where the population in general is taken into consideration. But, the REALLY bad personality trait? Many of the occupants of this planet don't even care about the tremendous mess that's being left for their children. Many people won't recycle. They throw trash from their auto windows, drive Hummers and the like in spite of the economy, the price of gas and the worsening environment.
And we deserve the responsibility of civilizing another planet whose health we can ignore? Geez! We're even busy trashing up space with spent satellites, left over lunar landing parts, etc.
I think the human race has earned the right to sit right here on this rock until it can be straightened out and cleaned up. If we can't accomplish that, then, barring God's intervention, we deserve to flicker and fade out with this orb. We painted ourselves into this corner. Why should we be able to simply do the same to another world?

A Little Sweat'll Do Wonders

2010-05-02T13:00:00.000-07:00

Saturday, I decided it was time to get the yard ready for the improvements we want to make. So, I spread organic fertilizer, bone meal, blood meal and potting soil over our garden. I then borrowed my neighbors big tiller and went to work. I tilled the garden 1st, then the hill behind our house that I have plans for.
The party continued as I planted corn, beans, zucchini squash and a couple of 'maters.
Got some Hostas my neighbor gave me in the ground, too.
I'm tired and sore here on the following day. There's something about hard work and accomplishing a job, though.
Told ya this disease wasn't gonna beat me!

Eye Guy

2010-04-20T17:28:00.000-07:00

Saw my Opthalmologist today. He was very pleased and said I exceeded all his expectations, considering the mess he was confronted with on my first visits. I have either continued to improve or have stabilized. My vision is 20/25!
There is a young lady who underwent a surgery to remove a growth in her head, like mine. They then put her on massive doses of prednisone for growths in her orbits, which did nothing for her sight. The growths suffocated her optic nerves and she is blind. But, they also put her on a 6-7 month round of Cladribine and Interferon and the growths on her brain, heart and right (I think) arm broke up and disappeared.
I sent the info to my doc, and we shall see.

Fatherhood?!!

2010-04-17T14:18:00.000-07:00

We learned Thursday/Friday that Carrs in Johnson City, Tennessee has found embryos for us. I'm excited for my wife. Me, I'm scared to death. The meds I take often make me a clumsy oaf. I forget things and trip over my own two feet. I just want our child to be safe. I, also, want to be young enough for him/her/them to enjoy and for me to enjoy them. I'll be 49 in May.
I just wanna be a good Daddy!

Video clip

2010-04-14T12:04:00.000-07:00

Met with my Pastors' wife to go over the video clips' progress and exchange some ideas. We're shooting for informative, yet comforting and inspirational.
Things went very well, and I'm excited about where we're headed with it. We can even record a song on campus that my ECD group leader would like included on the site.
Man I'm excited!!

Wellbutrin, Dosage, Insurance, Formulary

2010-04-12T17:20:00.000-07:00

My Medicare Replacement carrier has decided my already generic anti-depressant is too pricey. My Family Physician had to barter with them to decide what they would cover. So, now, after 9 years of using a time released med. that never once gave me a problem, they have changed to a twice a day formula. It has to be taken 8 hours apart and not in the evening, because it will keep me awake.
Well, I start the med, and, on the second day of it, I begin waking up at 3-5 AM and can't get back to sleep (I stay up 'til 1:30 or 2:00 AM to be with my wife, as she works the 3-11 PM shift). After several days of this, I'm exhausted. So, I've taken matters into my own hands and cut back to one pill in the AM only.
I immediately began sleeping through the night, except for the dog waking me up for his nighttime grass watering missions. But, I go right back to sleep. So far, the reduction has not affected my mood, except for an improvement due to sleeping well.
It is ridiculous to change a med after 9 yrs of successful useage because of cost, especially when it was already the generic form!! Profit over health, I guess!.
By the way, the xanthum (ECD growth) in my head begins at my pituitary gland, affecting testosterone production, mood and thirst, in my case. The thirst is under control. But, I need hormone therapy for the others. Wellbutrin is, of course, for mood/depression, and I apply a testosterone replacement gel every other day. I'm an expensive item :-).

Homeward Bound

2010-04-09T20:46:00.000-07:00

Getting ready for a weekend trip to Columbia, SC. At least it's not Summer! It's my Bro-in-laws' birthday/retirement party, and I'm looking forward to seeing my family.
My nephew-in-law (:-) ) is participating in his Spring football scrimmage for the USC chickens, gamecocks, whatever lol. We'll be there for that.
Then Sunday morning, Moms' home cooked breakfast. Mm-mm!!
It is confusing making sure all my meds are packed along w/ the other necessities. But, I'm loaded for bear this time. Ya never know!

Another Rotten Night

2010-04-05T21:04:00.003-07:00

Saturday night I could not get to sleep. I tried counting backward by sevens, a little Flexoril, then a little Tylenol PM. Finally, at about 4 am, my lights went out. I was determined not to miss the Easter service at church. So, My wife woke me at about 9:30, and the rush was on. I did get some coffee down and a little yogurt mix I make, even got my supplements down.
So, we were about 1/2 an hr late. But, we made it to church for a wonderful service and then went to the Chef's Table for an Easter brunch. Very nice. Only problem is, the lack of sleep Saturday night left me rubbery legged for today. Made for a rough walk. But, we did have a nice day and began picking plants for redecorating our yard.

Progress :-)

2010-04-03T20:19:00.000-07:00

Thought this was worthy of entering, as it is exciting news for those of us w/ the disease and caregivers.

Dear ECD Global Alliance Members,

I wanted to share with you some of the hopeful things that are happening within the organization.
In the past couple weeks we have been contacted by three different research teams interested
in beginning new research studies on ECD.
One team represents a group of doctors we have been talking with for some time about getting
an ECD research project started. Last week we saw definite movement toward that goal.
The other two teams have contacted the ECD Global Alliance, unsolicited, to ask if our organization
would be willing to collaborate on a possible ECD study. Of course the answer was a resounding,
“Yes.” It might be that collaborations will be formed between two or more of these teams to
form fewer, yet stronger, studies. All of the proposals being considered are geared toward
learning more about ECD as opposed to clinical trial type studies.
We also hosted an ECD Global Alliance Medical Review Board this week.
It was very uplifting to listen to these ECD knowledgeable doctors talk about their work and
ideas related to ECD research. This group of doctors is certainly interested in learning more
about ECD so as to have the most effective and rational treatments available.
As all this is happening we are also making preparations to communicate out to the world that
we are prepared to award an ECD research grant of our own.
None of us can predict where all of this discussion will lead. Any studies that come to fruition
will take time, and it is impossible to know how many studies might be needed before meaningful
advances in the understanding of ECD can be achieved and translated into better treatments.
However, the fact is that researchers are interested in learning more about ECD, and since there
is now an accessible patient population available in the form of our organization, more possibilities
exist. This is all very promising and shows that “Together we can make a difference.”
Thank you for being part of the organization. Because of you all this is possible. If you are
interested in participating in a possible future study and wonder what you might do, the best thing
at this time is to gather together your medical information, including reports and CDs of scans,
biopsy reports, test dates, etc. If you need any help in doing this, please contact the organization
at this email address and we will do our best to guide you through the process.

This was sent to our members by Kathy, our fearless leader.

Visitation w/ the Physician

2010-04-01T12:22:00.000-07:00

Had a nice visit w/ the doctor yesterday. Had a prescrip. that they wouldn't authorize a refill on until I came in to the office.
So, while I was there, I had her check out my left arm. It's been giving me trouble when I drop to do push-ups or reach at shoulder level or higher. Felt bone deep betw. my shoulder and elbow ( Bicep, humerus....). Everything checked out, though, and she advised I lay off the push-ups for a week or so. Prescribed a cream for a rash I've been getting on my shins periodically ever since I had radiation treatments in 2007. Oh, and refilled my prescrip so I don't run marathons in my sleep :-).
Scheduled a full physical, since it's been a year and a half, too. I look forward to that. I just love the way they ask, "Is this uncomfortable", when they're checking a guys prostate. Duh! Yes, it's a tad uncomfortable. But, it needs to be done. I'm approaching 50.
Man!! That just doesn't seem possible. Where did all those years go?!! Wasn't it just yesterday that I was 21?!! I wouldn't go back, though. The years have been way too good to me. I might miss out on meeting my beautiful bride if I go delving into the past. Too high a price pour moi.
Then we had a nice lunch at Chili's, went to Home Depot, picked up my "drugs" and headed home to our little buddy. We had a really nice day.

This @#&%$*! Day

2010-03-30T20:55:00.001-07:00

What a day! I slept well last night and felt pretty good 'til about 3:00 today. I fell asleep w/out even realizing I had blinked. When I woke up, it's like someone filled my legs and body full of lead. It was only about a 1/2 hour nap. I wonder if exercise doesn't, at times, cause me to absorb the Fentanyl faster. 'Cause I have been exercising more and more vigorously. So, it's a thought.

11 Years!

2010-03-29T21:23:00.000-07:00

My wife and I celebrated our 11th anniversary Saturday. I got her a massage, and she got me some acupuncture.
We had Rizzoto crab balls as an appetizer. The restaurant treated us to a glass of champagne. Then, she had Red Snapper w/ asparagus & potatos. I had Lobster Ravioli w/ asparagus. We enjoyed a half bottle of Zinfandel, and then, we had a chocolate lava cake w/ some lovely decaf for dessert. Wonderful day!!
Oh! And, yes, there was a nice bouquet of flowers waiting for her when we reached our table.
Love that woman!

Couldn't Women do a Better Job?

2010-03-29T18:50:00.000-07:00

This is entered realizing full well that there are stand-up, courageous men on this soil.
With a war going on, the brats in Washington fighting like six year olds trying to make sure hard working Americans have little if any health care and our reps slowly giving our country away to anyone who promises to suck the life out of the U.S., I've been thinking. Women are smart, strong and cunning enough to play politics (in a good way). They should be running this country. With a certain wolf-killing republican taken into consideration, I think women would make better decisions, wouldn't let tremendous egos get in the way and wouldn't decide the best way to settle things is to hire innocent citizens to kill other innocent citizens. For Pete's sake, show some guts and fight your own fight.
By the way, why are so many people blaming Obama for an avalanche that piled up behind baby bush? Our current president inherited the mess that exists, and it's going to take him more than 15 minutes to clean it up and complete his other responsibilities.

Exercise

2010-03-05T17:04:00.000-08:00

Boy! There's a good deal to be said for exercise and illness. I was absolutely dragging earlier today. But, I refused to let it keep me down. I took our little buddy for a walk, did some push-ups, spent a few minutes on the ellipse and did a few other activities. I feel much better. Need to do that more often. :-)

Ophthalmologist & Time-out

2009-10-22T20:34:00.000-07:00

The ophthalmologist was very pleased today. My field of vision has improved along with my vision clarity and eye pressure. I do hate having my pupils dialated, though.
Starting Saturday, I'll be giving my wonderful bride a break from me. Family is coming up to give me a ride to Columbia. Wifey will be on vacation for four days and then meet me in Columbia, where we'll spend time w/ both our families and just alone together.

Oops!

2009-10-15T21:19:00.000-07:00

Oops! That date, 10/16, is a Friday. You could probably figure that out for yourself. But, I thought, " Better safe than sorry". :-)

Good news

2009-10-09T20:45:00.000-07:00

Gots some relatively good news in my In-Box today. Next Saturday, 10/16/09, Erdheim's will be the Charity of the Day at GoodSearch.com. The charity will be listed as either ECD Global Alliance or Histiocytosis Assoc. of Am. More attention and more curiosity!

Yoga follow up!

2009-10-07T08:52:00.000-07:00

Oh, man! I figured I'd be sore the day after starting yoga. But, my gosh, I could barely move. I did exercise, regardless, and it helped. But, Ibuprofen during the day did nada.
I finally took a muscle relaxer before bed and awoke feeling much better :-) .

Yoga

2009-10-05T11:27:00.000-07:00

Started Yoga classes yesterday, Sunday. Thought it would help my health, flexibility and balance.
I learned it's a good deal harder than it looks. Oh!, am I sore today!

T-shirts

2009-09-27T19:13:00.000-07:00

Found out there is going to be an Erdheim-Chester T-shirt to spur some interest. I've already ordered some for wifey, Mom and me. I'm excited about it. But, I'm hoping they'll be used to help with funding research.

Fentanyl

2009-09-24T23:06:00.000-07:00

The new dosage of Fentanyl is doing really well. Was just a matter of giving it a little time to get used to.

opportunities

2009-09-17T19:13:00.000-07:00

After attending our small group, I came away with new ideas last night. Two wonderful gentlemen suggested I call two major universities here in NC. The idea is to check on the possibility of speaking to medical students, informing them about rare diseases. Then they can enter the profession aware of such afflictions. I like that idea!

Long Time No See :-)

2009-09-05T14:00:00.000-07:00

Well, it's been a while.
Had an appt w/ the oncologist late Aug. Said I am doing VERY well and reduced my patch (Fentanyl) from 25 mcg to 12.5. Took a little gett'n' used to. But, I'm doin' fine. Jus' better not go more than 72.5 hrs before changing patches. Whoo!! Also, have another MRI scheduled for November. Didn't say anything about an Abdominal/Chest CT scan.
Found out Sept. is Histiocytosis Awareness Month. For anyone who may not know, Erdheim-Chester is a Histiocytic disorder. More info is available at histio.org or erdheim-chester.org.
Had a speaking engagement about ECD, rare diseases and how God has used this disease as a blessing to encourage me and others I get the chance to talk to. I am looking into a possible radio interview w/ a local FM radio station, too.
The engagement went very well, and the Manager of the facility kept paperwork both on ECD and procedures on how employees may donate a percentage of their income, even if they don't list the HAA (Histiocytosis Assoc. of America) as one of their charitable organizations.
I chatted w/ my ECD group today. We are looking into more ways to encourage public awareness of the disease. One of the ideas is a video and another a tee shirt. If anyone has an idea about the video, please let me know.

September is Histiocytosis Awareness Month!
Now is the time to tell the world about Histiocytic Disorders and we need your help!
We have designed a number of ways for everyone to get involved in raising awareness.
It's easy to use our newly updated Histio Awareness campaign materials to spread the word.
Let's work together to educate the public about Histiocytic Disorders and reach our ultimate goal of finding a cure!
Visit the Awareness Headquarters for details on how you can get involved today!

T-Shirts

2008-11-18T19:41:00.000-08:00

I think I'm gonna go with "It starts with education. www.erdheimchester.com " for the T-Shirts. I think people are going to be more encouraged to donate once they learn more about ECD. Come to think of it, donations come in many forms. The message I get is, since our disease is so rare, research isn't warranted. So, it doesn't matter. Who's going to miss a hundred or so people?
With this methane emitting from DC, we could use folks to write, call, E-Mail, donate, etc. They need to realize that we're people with families and loved ones. As we've all heard, "The squeaky wheel gets the grease". Personally, I don't think we deserve to die and leave broken-hearted people behind just because we have a rare disease.
So, LET'S GET SQUEAKY!!!!

Je ne compren pas

2008-11-16T10:43:00.000-08:00

Ya know. It's funny how family members (Mom not included) won't donate a nickel for research to cure a disease their own relative/in-law has, and it ain't the economy. My cause page at Facebook has been up for months, now. I've also sent out notices to my entire E-Mail list. I let them know about erdheim-chester.com, too. They can get more info, updates and/or donate on that site. What gets me is, I'm not asking for a bankroll. A dollar helps. But, guess who gets hit up for Girlscout Cookies or donations for some drive at school, and we have way less money to toss around due to my illness. With us it's whether we eat, have an abode and/or stay warm thru the Winter. Plus, we're not talking about some field trip or prize. My sight and/or life could hang in the balance with this disease.
Geez, I don't understand people!!

Results

2008-11-01T16:03:00.000-07:00

Pleasant surprise. My doctor was very encouraging and told me no new growth was found on my MRI/CT scan. He was pleased to hear how dedicated I have tried to be in my exercise routine.
My wife and I celebrated on the way home by having lunch at Appleby's.
Yummy (My wife, not necessarily Appleby's)! :-)

More Radiation!

2008-10-14T17:25:00.000-07:00

Well, went in for another MRI and Abdominal CT scan today. I'll get the results on the 22nd. I did find out the raspberry barium is my favorite so far.
I've been feeling great. So, I expect good news. :-)

Improvements

2008-10-05T10:58:00.000-07:00

I've really become focussed and been fighting this disease. I've been walking, running (a little), exercising and doing some weightwork. I've also checked into supplements and cleanses and been using them as much as possible.
I've been feeling tons better, stronger and happier. I still have some cleanses to go ( I have to try them one at a time due to lack of income). I'm very optimistic, though.

Off my Derriere!

2008-08-15T19:30:00.000-07:00

Finally got busy and made some phone calls about T-shirts, sponsorship and possible speaking engagements today. Man!! About time!

T-shirt Idea

2008-08-08T19:26:00.000-07:00

Quick Qu. for those of you who know .01% to 99.9% about advertising and getting people's attention. I have the idea for a T-shirt to create curiosity on the street or when I start speaking engagements. How is, "ECD, IT CAN'T HAVE ME", for the front, and, "IT STARTS WITH EDUCATION: ECD at www.histio.org" on the back. Or, "SHOULD A DISEASE BE AN ORPHAN?!!"-Front and, "ECD at www.histio.org"? Whatcha think? Oh! The rhyme on the 1st one is unintentional.

Brochure & Speaking

2008-08-04T18:30:00.000-07:00

The fearless leader of our chat group came up with a brochure explaining Erdheim-Chester in plain English. I got a copy today.
I've been working on contacts for venues and other opportunities. Hopefully it won't be too long now before I'm standing on my soapbox ;).
By the by, a new site that is up, thanks to my chat room cohorts, is www.erdheimchester.com. Very good site for learning about the disease, research and us. I'm very proud of the job my fellow combatants did.

Oncologist visit

2008-07-30T15:12:00.000-07:00

Once again the Dr. was pleased with my "progress" today. He did say the disease showed a very small amt. of growth, which led him to wonder about a thresh hold for the Interferon's continued success.
He also brought up my Hydrocephalus. The ventricles in my brain are larger than normal, and the exit for spinal fluid from my brain is smaller than normal. He is concerned about the possible long term affects of this, pressure from inside the ventricles pushing out. So, he is referring me to another neurosurgeon to discuss a shunt. Inside I sighed heavily, wondering if I hadn't been through enough already. Ah! God's gotten me through this adventure so far. Who am I to doubt that He can carry me to the finish? :-)
I asked him about Pegasys, a time released form of Interferon. He said, unless they found some remarkable progress through further studies, he didn't recommend a change at this stage of the game. Makes sense.
I am scheduled for another MRI & abdominal CT scan in mid October. The drama continues........

Gettin' it done!

2008-07-24T20:50:00.000-07:00

With my wife's family coming for a visit to celebrate her nephew's leaving to begin classes at Tennessee, I've been busy working on the house and yard. I do it a little at a time. But, I've been pleased with the amount of work I've been getting done. Finished the grass, planted a hosta, pruned a couple of trees and black berry bushes, then come the dishes and laundry. I sleep well!!

Pulled in two directions!

2008-07-19T13:37:00.000-07:00

I'm really torn about meds. The 3 mil. units of Interferon have been working well. But, it tends to mess up my days with my wife due to fatigue and light headedness. These other drugs, ie Pegasys, Interferon b-2, are tempting because of the potentially lesser side effects. However, if I switch meds at this point in the game, I may risk the growth restarting. I know! I do plan to talk to my Dr.. It's just that my appt. with him is 2 wks away.

More News

2008-07-18T14:59:00.000-07:00

Talked with my Oncologist's assistant today. He, the Oncologist, does not recommend lowering the dosage of my Interferon. I've been thinking about it and agree. If this level is working, why screw around with it? Also learned that I will likely be on Interferon for the rest of my life, which I plan on bein' a long time . I'm healthy and happy. So, I don't mind so much. My life is what it is for a reason. I don't argue with
The Big Guy. The way I look at it, He can make lemonade from rotten fish. I think I'll do my best to follow where He leads ;-).

Telecon & Endocrinologist

2008-07-17T19:32:00.000-07:00

The teleconference went very well. Dr. Kurzrock agrees with us that the most important thing is educating the public on these diseases, especially ECD. People go undiagnosed because, at times, doctors don't know what they're looking for and have never heard of the disease.
Turns out that, now that I've been on Interferon a while, I may be able to reduce the dosage to 1 mil. units 3 times a week. That would mean a huge savings. My last four syringes came in one shipment totalling $1008. It will still cost the same. But, I can stretch out the time between shipments. There are other drugs that may be effective, such as Pegasus. Interferon 2A and 2B are both useful in fighting the disease. So, if one is less costly, I may be able to switch and take us up one level in the poor house.
My Endocrinologist tested my hormone levels, and my testosterone is back up to normal. Funny. I felt that happen. One day it was just like someone flipped a switch on inside me, and I felt much better.

Bad Info

2008-07-15T15:53:00.001-07:00

The Tel Conference on the 16th actually has only 10 slots. So, I will report back with what I learn. :-)

Chat/Conference Call

2008-07-13T12:13:00.000-07:00

Dr. Razelle Kurzrock of MD Anderson in Houston will be giving her time for a Q & A in our chat room: http://www.chatzy.com/427437211406, on the 16th. She is THE Dr. as far as Erdheim-Chester is concerned and is one of two Dr.'s that discovered Interferon as useful in battling the disease. This is a great honor, and we are, needless to say, very pleased that she would take time out of her schedule for us.

Wednesday, 7/16 at 11:15 am to noon (Eastern Time)
E-Mail questions to garyecd@aol.com.

MRI Results

2008-07-09T21:13:00.000-07:00

Well, Doc says my MRI results from Tues., July 8, show "no appreciable growth in the orbits or nasal area compared to previous studies". I'm guessing, in doc language, that's good news. His assistant was extremely pleased. Actually, I'm sure it is good news. I just love the way they phrase things so that it sounds like a good report, but you're not quite sure . Seeing as how once people had about two years to live when diagnosed with this stuff, and I've KNOWN about something, in my head at least, for eight years, I'm doin' pretty darn good . We did discuss another full body bone scan. But, we shall see what ol' doc Friedman says.

The Fourth

2008-07-04T19:46:00.000-07:00

I've been feeling so much better. Interferon still leaves me a little groggy. But, otherwise I feel good.
My wife and I celebrated The Fourth together before she went to work (Double time pay!!). I grilled Italian, turkey sausage, baked a couple of taters, made some mixed veggies and had Ben & Jerry's Cherry Garcia ice cream. Too bad I can't have a beer! Oh, well. For me to have done all this a few months would've been quite an undertaking. It was great today, though.

Long time no see! :-)

2008-06-26T13:44:00.000-07:00

Hey, hey!Interesting little adventure this morning. I'll leave out the long part. But, I wound up getting the # of someone at the bigger newspaper in Western NC. I called the lady there, and they may, at some point, be interested in doing a story or series on Orphan Diseases, one of which is Erdheim-Chester. It's possible, and I certainly hope likely, that this would increase knowledge of these illnesses, then jack up funding and attention. She seemed very interested and asked lots of questions. I'm a writer, not an orator. But, hopefully I did okay and tweaked her interest. I've begun a cause at Facebook:http://apps.facebook.com/causes/97118?fp=fb003&recruiter_id=16154293 , and am looking into that writing I talked about.
On Monday, 6/23, the opthalmologist reported he is very encouraged. My vision is about 20/25 and has maintained that for almost a year. He asked permission to use me as a case study for an upcoming conference. I should get him some attention, huh? :-)

Ideas!

2008-04-08T13:35:00.000-07:00

A friend of mine in St. Louis suggested I set up inspirational talks at churches and such. He seems to think my attitude would help lift those who've had the unpleasant experience of a nasty diagnosis.
I like that idea and it lead to another. I have an idea for a "Southern Fried" book about my experience. I think it's important to be able to laugh even in situations that seem grim. Since I've refused to give any ground to my "inconvenience", I've found my smile again, have more energy and, in general have a better outlook. Low and behold, my health is improving. I'm able to have short bursts of running with our dog, "Curry". I've been trying to establish a routine of push-ups, sit-ups, a bit of weight work, etc.
The most important thing for me is to follow God's lead. I want to be about His work and help others the best I know how.

News w/ a dash of Hope

2008-03-20T21:07:00.000-07:00

Got some news from a friend of mine in Detroit who also has ECD. Apparently there's a new Laser surgery/equipment for tumors, especially behind the eyes. He called and got their info, then talked to them on the phone. They do believe the procedure can help ECD patients. It may be considered experimental by insurance folks. But, who cares? Don't think I can put a price on my life!!
So, I plan on calling them, in Indiana (A Dr. Shang), tomorrow, Friday. Will keep you up to date.

Chatter

2008-03-08T12:09:00.000-08:00

Went in Monday morning for a CT scan of my chest and abdomen. We'll get the results on the 11th. I feel peaceful about it. So, I think God's trying to tell me something there. 'Course, I've tried to give Him this burden, and He promises His yoke is light.
Found something sort of odd. When I inject Interferon into my thighs, it seems to relieve my leg pain quickly. Since it uses the circulatory system and doesn't depend on site, I wonder why this is. Not arguing, mind you. Just curious.

Dosage Change

2008-01-22T16:40:00.000-08:00

I adjusted to the increase quickly. It leaves me kinda loopy for an hour or so the next morning. But, then I feel pretty good (Coffee always helps, too :-)). My energy levels and mood are up.
Started seeing a counselor Mon., the 21st, and he helped a lot, too.
I'm already making plans for the day I have to ween myself off of these drugs.

New Dosage

2008-01-15T20:30:00.000-08:00

Whew!! This heavier dose of Interferon is just no fun at all. Went from 4 mil. units, 3 times per week to 5 mil. units, 3x/wk. I can see my body is going to need a little while to adjust. Been dizzy a good part of the day. I did manage to get a little housework done, though.

Blessed

2008-01-13T11:53:00.000-08:00

A friend at church this morning asked me how things were going. I told him I was feeling much better, but am worried about the stress of all the bills falling on my wife, that it would help if I could just bring in enough money to keep gas in the cars and/or fuel in the furnace.
That sweet guy pulled out his wallet and handed me a C-note saying, "Here. Put some gas in your cars". Like a sap, I cried.
I've said it before, and I'll say it again.
We are a very blessed couple. God takes good care of us.
I'm making a conscious effort to take more time in prayer to just say "Thank You, Lord" instead of asking so much.

What a Day!!

2008-01-02T11:17:00.000-08:00

Well, I remembered something I forgot that is just a wee bit important. We went to MD Anderson in October. While there, the world renowned Dr. Kurzrock wrote an order for me to have bloodwork done every 3 weeks. Some chemical they need to keep track of when a person is on Interferon.
So, I took the order to our hospital (closest place for me since I shouldn't be driving), dropped it off and promptly forgot about it. DIPSTICK!!
Now, I'm trying to fix the error. Thus, I start tomorrow, and faithfully follow my routine. Means I have to drive to the lab once every 3 weeks. On the other hand, I want my chances of survival to be favorable. So, I'll just have to be extra careful. My wife works 'til 11:00 pm and needs to unwind after work. So, she hits the sack about 1:30 or 2:00. I ain't asking her to get up at 6:30 a.m. to drive me 6 miles. She gets too tired as is, and I worry about her.
Oh, in case you're wondering, ain't no public transportation in Waynesville, NC.
I, also, got on the phone w/ MD Anderson and twisted their arm about working w/ my Oncologist here. Their Dr., Kurzrock, has seen several cases of ECD and reversed them. So, I want her involved.

Awareness

2007-12-31T15:18:00.000-08:00

Went to the hospital to pick up my Interferon today. While I was there, I went to my old work station to see my old buds. I always saw myself as a hard worker. That's the way my parents raised me. But, these folks just gushed about how they missed me. Next, I stopped by Urgent Care to say "Hi", and they did the same thing with hugs included. It's so nice to know I wasn't too stubborn to let God reach through me and touch someone else.

Only problem is, now I need someone to reach out to me. My disease does scare me a bit, and I get very lonely here by myself 'til my wife gets home. We're just gonna have to find out where the volunteer work is and get busy. "Idle hands....".

2007-12-28T18:12:00.000-08:00

By the by, I feel particularly blessed by this gift (song), "In America", God gave me. It describes how I feel about the Land I love and is dedicated to the men and women that put their lives on the line every day to keep this soil free. The country is the men and women that work, sweat and bleed to make this nation work, that are the backbone of this country, that this country would fall apart without. My heart is with you folks and our troops.
Bless all of you.
A special "Thank You" goes out to Casey Hurowitz of Hopeful Dreamer Music who took this song under his wing and worked his magic on her.
http://www.soundclick.com/members/default.cfm?member=walter327

Getting to know you.......

2007-12-28T16:37:00.000-08:00

Well, hi there.
First off I'd like to say, be prepared. I'm gonna have good days and bad. See, I've got the honor of having a rare disease called Erdheim-Chester Disease, (http://www.histio.org/, http://www.thedoctorsdoctor.com/). While my wife and I have decided we're in it for the long haul ( gonna give this crud my nastiest low blows and rabbit punches), there are still days when I wish someone would just take care of poor little old me. Readers will get both sides of the coin.
'Kay. We've become determined that this thing can't have me. It's met someone with a double thick skull and a steel rod for a spine. My family knows the story before this weekend before Christmas (some other time). But, since that miserable three days, when I truly thought I was going to die, I've begun walking hard and fast, stretching, running up and down our steps, no matter how unsteady I am or how much it hurts, and just generally refusing to recognize the presence in my body (Maybe if I ignore it, it'll go away :-) ). I've remained steadfast in praying. I mean, without Him I wouldn't have a wonderful, beautiful wife; a gracious, supportive family or all of the fantastic blessings that are so abundant in my life. He's the Bomb, I tell ya!! I have honestly felt much better, after getting over the soreness, of course. I think I recognize me in there behind them eyes, again.
Ain't perty. But, it's me. ;-)