Friday, August 15, 2014
My NF2 Journey has been a long and complicated one, just as my Grandmother and Mothers' cases were, and so my family has known the word Neurofibromatosis for over 40 years now. I have written extensively here on my blog about my personal and medical experiences mostly as a release, but also in the hopes that other people with NF can find even a smidgen of support. My blog is not meant to be taken as medical advice. What works for me, works for me. That being said, the following is a list of links to what I feel were the most pertinent posts as related to my own NF2 experience. I sometimes am contacted by newly diagnosed patients, or their terrified mothers, and I hope this post will serve as a landing ground for those trying to catch up with the Fabulous Running Mommy...
The Fabulous Running Mommy: You have to start somewhere....
The Fabulous Running Mommy: Mom
The Fabulous Running Mommy: Why I Run
The Fabulous Running Mommy: 26.2
The Fabulous Running Mommy: JT is not my Uncle Eric
The Fabulous Running Mommy: Experiencing Gamma Knife
The Fabulous Running Mommy: Hope Is All We Need (Tumor tissue testing)
The Fabulous Running Mommy: False Hope? (Dr. Barth's office closes just as I start treatment)
Small Business: Doctors going broke - Jan. 5, 2012 via CNN Money
The Fabulous Running Mommy: Take the Good with the Bad
The Fabulous Running Mommy: Reckoning
The Fabulous Running Mommy: Acceptance and Closure
The Fabulous Running Mommy: Infused
Previous to beginning Votrient, when looking at my scans over a period of just one year, you could definitely see tumor growth and new tumors on every single scan. Now, since starting Votrient, my growth has slowed to an immeasurable crawl! That is the absolute best news in the world to me, it makes my heart leap with hope! My brainstem doesn't feel as heavy and stuffy, my balance has improved, and my new neuro-oncologist, Dr. Minh Nguyen at OCOH in Newport Beach, is supportive of continuing this little one woman trial so long as the side effects remain tolerable. Several other doctors have viewed my scans and each has agreed they see a difference, even those who are (rightfully) skeptical admitted I seem to be responding to this treatment! So I am filled with hope as always, but realistic. This is not a cure, or a long term solution, this is just the best chance I have for now.
As of today there are 295 posts on the Fabulous Running Mommy, you can use the search bar to locate specific topics such as Cyber Knife or Bio30. Again, these are purely anecdotal, even my own opinions have evolved from some things I have written before. For example you can find detailed vegan recipes, and I eat whatever I can get down these days. As a writer and a human I am biased and flawed, we all are. I am desperate for a cure, a treatment, anything that could help me, my son, and so many awesome people with NF. We have lost so many people, even just in the last few months our NF community was hit hard by several deaths, all tragically painful and so young. I am 31 years old and have more brain tumors then I can count, brain damage from having had 13 brain tumors treated over the course of 15 years, I am deaf, experience intermittent visual seizures and blurred vision, moments of confusion, my once long hair is shorn tightly to hide the scars and bald spots, my spine has had chunks of bone removed in 6 different surgeries in an effort to reach the cluster of tumors that regrows each time, only to be cut open again in the next surgery, I have lost the grip in my left hand, cannot make it through a night without spasms rocking my body, I have completely lost my ability to develop natural hunger from a combination of brain stem damage and long term chemotherapy, and the list goes on yet, I am not even a severe case of NF2! Our community is filled with amazing young people forced to live in hospice care, scraping by on disability, paralyzed, deaf, blind, or even all three. We are always vigilant to vague symptoms that often lead to more surgeries all in the hopes that we can hold on just a bit longer for the cure. For every patient you meet that is doing well, there is another languishing in a continual cycle of surgery and recovery. We long for the freedom to live and love, without the constant shadown of NF threatening our simple existence. NF is a devastating disorder with no treatment that eats us from the inside out...
For this reason I invite my readers to share their own NF story with me, by comment or email, tell me what NF has taken from you, enough with the silver lining, our struggles are our truth, and the truth may very well set us free.
I've shown you my truth, now you show me yours.
Tuesday, August 12, 2014
I perch and observe,
Forever out of bounds
Always the passing stranger
With the inquisitive eyes and
You turn away.
My light shines bright
Like a moth you flutter ever closer
You bask in my glow and
Bathe in my electricity.
As light breaks
You hold up a mirror and dare to call my reflection your conquest
I am the mirror,
I absorb and guide the light, making your lies more palatable.
Where will you look and
What will you pretend
When I lay shattered and
My light is free for all
To see streaking away
Far far away
To a place with answers
To a place you cannot come without a soul
Where will you warm your hands,
When my heat exists in a realm
You cannot fathom,
Free from The never ending flow of ignorance
And here, you cannot follow me
You must find your own way, in
Another lifetime or so.
Wednesday, June 25, 2014
Combine a bag of frozen boneless skinless chicken with plenty of garlic powder and onion powder in a crock pot. Cover with water, or green tea. Cook on low until the chicken falls apart. Add a bag of prewashed kale, a can of Italian style stewed tomatoes, and a lot of Italian seasoning. Continue to cook on low until the aroma permeates your space, and the kale turns a soft vibrant green.
Sunday, June 15, 2014
I want to share something I have learned over time about the men in my life in honor of Father's Day... I have much more to learn about life, and men, but much of what I have learned has been from the men I am lucky to call husband, daddy, grandpa, uncle, or even friend. The men in my life don't speak as much as they listen, if something is broken they are going to fix it or die trying, you won't catch them crying over spilled milk because they're too busy wiping it up, they don't blame the world for their problems, they build their own world. The men in my life work with their hands, but don't let the grease and calluses fool you, they are intelligent and creative, they see things I would never think to consider. I've learned if I step back, and give them the space, they will amaze me every time. The men in my life have an unspoken code far older and more dignified then a bro code. They live by a code of morality and principals, they protect, support, and love their families fiercely, and know that being the head of a family is a life of both servant and king. They don't start fights, they finish them. They have strong opinions, and they will teach you about them not by words, but by actions and hard work. Happy father's day to my Daddy and my Bebu, my Gramps and my Daz, my brothers, my uncles, both Amador and Brito, and Happy Father's Day to every Father...
Wednesday, May 28, 2014
the waves of monotony
Crashing down over me
The shadow stretches far beyond
the ever spreading reach of Imagination
I am enveloped
My breath escapes and
I reach out!
toward what I hope
is the shore
Until the void smothers
my stifled scream and
the salty water rushes in
Crushing my heart
Saturating my mind
With the sting of salt
The stone where hunger
once lie now cold
Metallic and bitter
The surface ever further away
Moonlight filters down and
my eyes are wide open
I breathe and
Saturday, March 15, 2014
Iron drips and slinks deep into my veins while
those around me suffer through intravenous poison...
I prefer mine orally...
Later I'll scrub, wash, cook, organize, and rear...
But now I sit, swaddled in a clinic...
Alone, as usual.
Apologies fall like hail, pelting my dignity as I feign detachment from those who care not...
The pages of my book flutter along as I devour the world I've never seen beyond the bind...
Off tune 90's radio lilting through my mind...
Mouths move around me, eyes caught, awkward smiles and avoidance...
What's so funny?
Don't worry about it...
I'll tell you later...
Always put the greater good first,
Who decides what is good and
When is it my turn...
I'm selfish, self centered, and guilt ridden by self derision...
Filthy, crumbling, decaying tiles pave every beautiful room I leave...
Mumbling doctors and exhausted nurses the only witnesses to my purgatory...
Carve a smile on my tired face
Paint on beauty
Washes down the drain with...
Clumps of hair and...
Chunks of mascara and...
Memories that serve only to distract.