Friday, August 15, 2014

My Truth

Sometimes I don't remember who I used to be, and other times I feel a sense of longing for her, but more often then not lately I am simply content to exist as a free human. Memories and faces overwhelm me at times, they float detached from meaning, and I lean forward as I strain to put things into context. Sometimes I get flashes of a lost day, and I realize that it changes nothing now, and I simply release it back into the ether...

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

Update 8-15-14
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


Life marches forward for most as
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.

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