T-Shirts

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

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

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!

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

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!

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

T-shirt Idea

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

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

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!

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!

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

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

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

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

Chat/Conference Call

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

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

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! :-)

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!

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

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

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

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

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

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!!

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.