Thursday, November 1, 2012

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!

Tuesday, July 17, 2012

6 months!

6 months today since I have smoked!

Saturday, January 28, 2012

Day #10

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 ;-)

Sunday, January 8, 2012

More on Zyban

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. 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.
No more beer? Maybe I will have 1 beer,
just 1, before I go to bed.

Friday, January 6, 2012


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!

Saturday, December 31, 2011

Happy New Year - 2012

Wow! 2012! Where has the time gone??
I am 44 years old.
In New Years of the past, I have always wished for
happiness, wealth, prosperity, success or some material thing that I coveted.
Hands down, there is no greater gift than Good Health.
(it only took me 44 years to "get" this lol)
If you have good health, any of the other things I mentioned, are more attainable.
Happy New Year everyone, and I wish you, and myself, Good Health for 2012!

Wednesday, November 23, 2011

Inconclusive (hate that word!)

It all started with a routine PAP smear,
in which the gynecologist noted that the Lymph node
glands in my neck, were "grossly enlarged".
(not good for a person with Lymphoma -
even if it is in remission)
So, Dr. Zu, my oncologist, ordered a PET scan,
to see the status of my cancer.
(PLEASE don't be back Cancer, I do not want you here!)
The PET Scan was inconclusive. WTF?!
Dr. Zu is "not convinced the cancer is back" BUT
is "concerned about my enlarged lymph nodes"
He said we will give it a month or 2, and if the swelling still exists
He wants me to have a biopsy ;-(