To explain my annual MRI’s & the Results:NF2 is caused by a lack of Merlin produced by the body to stop tumors from growing where they’re not wanted. Merlin is the body’s home-owner’s association, and without it, thugs come in and set up shop along the brain and spine.These tumors are benign, mostly harmless, and they’re only dangerous when they start to infringe on their neighbors rights, like those filthy gang bangers and their loud ass rap music bringing down property values around here.All people with NF2 get tumors in both ear canals, which is where the cranial nerves run and why NF2 is so dangerous to hearing, vision, facial movement, and balance. But other than that, NF2 affects everyone differently; this is why it’s so hard to treat. Doctors have no set pattern to study. Tumors pop up on the lining of the brain, by the brainstem, on the spine, just hanging out. They may sit there for YEARS not bothering anybody, then decide to strap a bomb in a backpack, and blow up the local 7/11, causing sometimes, irreparable damage to surrounding areas.So what happens is, we monitor tumors with annual MRIs, which are compared to previous MRIs to check growth. Scans are kept digitally or, at worst, on CDs.Technology is awesome.Then it becomes a game of, ok, this tumor has grown more than this one but this one’s closer to something important…So when an NF2 patient gets a MRI result of “stable”, "no change", or "come back in 6 months", that’s the very best we can get. But an NF2 life is that annual gut-wrenching MRI result waiting game. Right now, I am winning the game!
Doing good. Today is day #10 of me not smoking. The absolute hardest time, when I really crave one, is after dinner. After any meal I want one, but dinner is the hardest. My new addiction: Yogurt covered raisins ;-) Very yummy, and I don't have to step outside to have one. Monday night, I will sleep over at the Baumanns house, and then bright and early Tuesday, we head to the airport, for our annual visit to NIH. It will be me, Craig & Garrett Baumann traveling together. Wednesday & Thursday will be MRI's, etc. I have an appt in the vision clinic, I hope I can talk the eye doc into updating my glasses prescription. Craig & Garrett will head home Thursday night. I will be admitted to the hospital for surgery Friday. Don't worry, it is a minor surgery. Dr. A is going to remove this annoying, bothersome tumor on the inside of my wrist. Geo arrives Friday evening; they have a room reserved for him at the Safra family lodge, on the NIH campus. I heard it is nice, anybody been there? If everything goes smooth (it will) I will be discharged Saturday, and we shall fly home. See ya next week ;-)
So, my cigarette cut off date is January 19th. I'm just supposed to taper off until then, since I can't/haven't/or-just-wont go the cold turkey route. I'm doing well on that, today I have had 1 and 1/2 of a smoke. It's evening, normally at this time of day, I've had 8 or more. Breaking my own personal rule, "assume nothing, question everything", I allowed myself to be under the assumption that this Zyban drug has Nicotine in it.....makes sense right? WRONG! It has zero nicotine in it. Zip. Nada. Ziltch. It is an anti-depressant! They use it in non-smoking programs, to curb the irritability, depression, frustration, etc., etc., that people trying to quit experience. Ok....how is an anti-depressant going to help me quit? Won't this just be going cold turkey, with the giggles?? WTF? When I got the Rx, the pharmacy told me, "you really can not drink with this medication". Well I know that! You aren't supposed to drink while taking ANY medication. You know I always do, I drink a minimum of 2 beers a night but usually much more, regardless of whatever med I am on. Yes I know, but spare me the lecture, I'm just being honest, even if it does reveal my weaknessess. ANYWAY....they are serious, you really can not drink with this med. Friday night I drank maybe 5 beers, and woke up Saturday morning with a horrible headache, the chills, and my whole body was sore. (don't say hangover, that is a joke, I have to drink WAY more than that to get anywhere near a hangover) That lasted all day Saturday, and then I could not sleep. Now, Sunday evening, the headache is gone, but my body still feels really sore. One of the listed side effects are "Flu-like" symptoms. Good description. Clearly, the alcohol enhanced that. And today my Zyban dosage doubles. Wonderful. No more beer? Maybe I will have 1 beer, just 1, before I go to bed.
I start Zyban yesterday, it is a smoking cessation drug. Before my insurance would approve the rx, I had to show proof that I am participating in a smokers-cessation-support-group. So I joined a phone support group. Hello? A PHONE support group?? Anyone else see the humor there? Actually, my program counselor seems pretty cool. So far I have had one 30 minute session with her. Geo answered the phone, and gave her a brief tutorial on the Captioned Telephone, now she is a pro at it, and we have another session this coming Tuesday. Wish me luck on this journey!
WHEN MY FATHER MARRIED MY MOTHER, SHE HAD 2 CHILDREN ALREADY, DAN & VICKI. MY MOTHER DIED WHEN I WAS 3. MY DAD WAS THEN A 50 YEAR OLD ALCOHOLIC. HE SOLD EVERYTHING AND DROVE TO CA, TAKING ME ALONG. HE LEFT DAN & VICKI. MY MOTHERS MOM ADOPTED THEM. OVER THE YEARS I ASKED ABOUT MY BRO & SIS MANY TIMES. THAT SUBJECT WAS TABOO, HE WOULD NOT TALK ABOUT IT. OR ABOUT MY MOTHER.
HE DIED WHEN I WAS 17 OF CIRRHOSIS. SO 19 YEARS AFTER SEEING MY SIBLINGS I GET A LETTER, FROM DAN SAYING "I THINK YOU ARE MY LONG LOST LITTLE SISTER. PLEASE CONTACT ME. BY THE WAY I AM DEAF." HE WAS IN VA BUT FLEW TO CA TO MEET ME. HE ALSO TOOK ME TO MY SISTERS HOUSE TO MEET HER & HER DAUGHTER,(MY NIECE - RHIANON, WHO IS NOW ON CREW) & THEN ON TO MY GRANDMOTHERS HOUSE. THEY ALL LIVED ABOUT 5 HRS FROM ME IN CA. I SPENT A SUMMER WITH DAN IN VA. I HAD NEVER SEEN A PICTURE OF MY MOTHER, HE GAVE ME MANY.IT WAS A VERY EMOTIONAL TIME. IN 1992, I HAD MRI'S & WAS DX'ED WITH NF2. I HAD ZERO SYMPTOMS UNTIL 1997. MY MOTHER DIED IN 1971, DAN & VICKI DIED IN 1995. ALL DIED DUE TO NF2 RELATED CRAP. MY MOTHER INHERITED NF2 FROM HER DAD.