Well hell…
I love to write.. It feels good.
I like to think I am or was good at it at one time…
I’ve been published…in a nationally printed magazine, and as early as the fifth grade so in the local paper, so I imagine I ain’t so bad.
One problem is tho’ I tend to ramble a bit…very often a bit verbose.
Trying to be perfect, I express everything I want to say in fine detail.
Then, at the risk of not getting it just right I wait to hit “submit”…so things sit on my desk until they no longer relevant.
So, here is the Cliff Notes version of the Readers Digest version of the most recent blog attempt.
Please forgive the horrid grammatical and other errors…
Last January I was diagnosed with a brainstem tumor…
It is believed to be caused by a genetic condition called Neurofibromatosis-1 from my moms’ side of the family.
Its also believed to be benign, but benign just means it ain’t gonna break off and set up shop elsewhere in my body.
It’s still is choking the life oughtta me thru my brainstem… things like vision, taste, breathing, heartbeat, bowel control… all will degrade over time until I am completely without control…
Soooo…
Nf-1 has always been a fact of life for our family. But was mostly disregarded as a nuisance. Chalked up to a condition of mostly of cosmetic concerns…usually small fibroid tumors that from just under the skin…although other more serious tumors can and do form deeper in tissue…
The medical statistic says the chances were 50/50 that a child of an nf-1 parent would pass on the traight..(a genetic malformation at chromosome 17) … I happened to get it, my brother did not… out of my two daughters, my oldest escaped, my youngest did not.
Although she was diagnosed at birth, her mother and I never gave the condition much thot.. it simply was not considered much of a serious health risk..until a tumor made its appearance on my brainstem.
Until now, she was scheduled for mri’s every two years or so to be sure that there were no tumors starting in her head ..you see the lining between her brain and skull are a favorite place of nf-1 tumors to sprout.
Although my new condition doesn’t change the statistics for her developing any new condition, it certainly got the attention of her mother and I. As it turns out, that during periods of hormonal flux, (puberty, pregnancy, and menopause) there is an increased risk of tumor development so my daughters’ pediatric neurologist recommends mri’s every year instead of every two. (the idea that my daughter each has our own neurologist is unsettling)
January 08 - What the hell two for one.. we’ll have Mariah get an mri at UCSF while dads getting’ his… why make two trips? Hmmm...
Dads starting his radiation treatment because brainstem tumors are inoperable…
No surgery.. just radiation..
Chemo is an option.. sort of.. maybe later…more on that later…
So Mariah gets her freekin mri… and it’s all good. Right? Uhm, no.
Damn mri reveals a few things we find curious.. not specifically alarming.. but surely curious. Things that weren’t on previous MRI’s.
Sonofabitch.
MRI shows two “anomalies”…one on the optic nerve behind her left eye, the other in the optic nerve channel behind her right eye.
Doc says now we look at mri’s every six months,. (More frequent = elevated interest)
Sonofabitch.
My mother was sick with respitory disease for many years. Rarely did she ever complain. I regret deeply that I did not do more for her. We spent many holidays in hospitals…At the time I was oblivious to my insensitivity - what a fool I was…so young.
The thought of my child facing similar difficulties scares me.I am happy that she is getting the attention the situation needs in the appropriate time.
Had my tumor been discovered years ago, I would be blogging a different blog tonight.
The thot of her facing a shred of the nightmare I have terrifies me.
I have a headache now.
