Progress?!

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

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

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

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

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

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

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!!

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.