Hi guys, so this blog just does not fit who I am anymore, and hasn't for a very long time. I miss her, the mom of 2 babies running along like a turtle and binge watching Smallville in our small condo, spending my abundance of free time with my mom's group homies or crying over the natural growing pains of my young marriage. The summer I lost my vision, everything changed. My vision came back, but I did not, not in the same way. Lately, I have been doing incredibly well physically, emotionally I have embraced my chaos, and I have turned the page to a new chapter in the novel of my life. I invite anyone who somehow ends up here to come on over to my new website...
Www.OliviaKristinaYoga.com
The new blog is up, just check out the menu, soon there will be a store, art gallery, and live schedule with info on my yoga classes throughout the Inland Empire. I doubted myself for so long, but the only one that hurt was me. We get one shot at this beautiful, crazy, blessing called life. So get up, put one foot in front of the other, and never give up.
Tuesday, June 27, 2017
Tuesday, January 5, 2016
Wednesday, May 20, 2015
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.
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
absorbed
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.
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
Daily Sustenance
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
Happy Father's Day to every Father...
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
Observe
Suffocated by
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
I fight!
Until the void smothers
my stifled scream and
the salty water rushes in
Crushing my heart
Saturating my mind
With the sting of salt
Purified
The stone where hunger
once lie now cold
Metallic and bitter
I sink
The surface ever further away
Moonlight filters down and
my eyes are wide open
I breathe and
Observe.
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
I fight!
Until the void smothers
my stifled scream and
the salty water rushes in
Crushing my heart
Saturating my mind
With the sting of salt
Purified
The stone where hunger
once lie now cold
Metallic and bitter
I sink
The surface ever further away
Moonlight filters down and
my eyes are wide open
I breathe and
Observe.
Saturday, March 15, 2014
Infused
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...
Content.
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.
Sunday, October 6, 2013
Acceptance and Closure
For the last 5 years of my short life the third weekend of October has meant just one thing to me, serving as Team Captain of the NF Endurance Team at the Long Beach Int'l Marathon. If you are a long time friend, you may be surprised to read those words without them being highlighted in yellow and followed by a seemingly preposterous amount of exclamation points. You have probably just now realized you haven't recieved any emails or social media alerts from me encouraging you to join us, to get off the couch and on the course, or to consider monetarily supporting the Children's Tumor Foundation in quite some time. I have recieved numerous emails from team mates and supporters asking for this year's plan. I kept saving the emails into a folder to respond to once I had a better answer, but no answer ever formed...
The truth is, I simply do not have the energy and stamina to participate in an endurance event anymore...
I have not deluded myself into believing anyone was waiting with bated breath for me to finally address this issue, but I feel the need to specifically respond as a form of self-acceptance...
The fact is people with NF get sick. We get really fucking sick. We don't fundraise for kicks, we are terrified to be the next person on the NF Memorial page. It is why we see so many NF Moms doing the leg work, literally, because a lot of us just can't run. I have been upset about not being able to participate in the NF Endurance Team for quite a while now, and enough is enough. My life is filled with joy and beauty, and so rather then lament my inability to continue on one path, I am saying a fond farewell and finding another.
To every single one of you who have donated in my or JT's name, shown up to cheer, run or walk for us, been a teammate, a friend, a supporter... Thank you. Being a part of this team has been the motivation I needed at some of my darkest moments. When I felt helpless, it gave me an avenue to fight for myself and my son. I loved every second of it, and this Sunday when the Long Beach Marathon happens without me there in bright yellow for the first time in 6 years, I will try to simply be happy for the memories in my heart.
To each of you who contacted me and went unanswered, I apologize. I am still here, and will continue to be a part of the search for a cure in any way I can for as long as I can, just not through running.
To those of you still on the course, run strong friends, be grateful for every step you can take, and NEVER GIVE UP.
Sunday, May 12, 2013
Happy Mother's Day to Every Woman
I am confident in myself in large part because I am blessed to have been shaped by several amazing women over my short 30 years. I love each of them for what all women are: Creators, lovers, whimsical, mysterious, vulnerable, strong and beautiful. Mother's Day is for every woman who has ever born pain with a smile, bent down to help another woman's child, cooked for so many people she ran out of dishes, stayed up late enough for the kids to finally pass out so she could steal hushed kisses from their Father, or simply kissed him right in front of them because her greatest hope is for her children to know how to love as fully as she does. I have an abundance of amazing women in my life such as these, and to every woman who chooses to take on the role of Mommy... Happy Mother's Day.
Wednesday, April 3, 2013
My hero...
Eight years ago my rambunctious 2 year old was diagnosed with Neurofibromatosis Type 2. I wish it had been the first time we learned of it, but JT is actually the 5th person in our family to carry this devastating genetic disorder that causes tumors to grow on any nerve ending in the body. We have lost my Grandmother at age 42, my Uncle at just 27, and my own mother at 39 when Jt was a toddler. She loved him so very much...
JT was diagnosed when his eye doctor noted retinal hamartomas of both his eyes. The tumors leave him blind in one eye and impaired in the other. JT has been put to sleep for MRIs every 6 months since then to track his nervous system for any new tumors or growth. Last year we were told he is now developing the hallmark brain tumors of NF2 known as Vestibular Schwannoma. As these tumors grow they cause deafness, facial paralysis, and severe coordination difficulties which are often exacerbated by risky treatments that serve only to buy him time.
5 years ago JT and I got involved with the Children's Tumor Foundation. JT takes pride in training to run with the NF Endurance Team each October in Long Beach, and to date we have raised over $10,000 toward vital NF Research!
Now we want to ask our friends and family members to join us as we embark on a new fundraising opportunity for CTF with their Racing for Research program...
On April 20th JT will have the amazing opportunity to join GMG racing and the Pirelli World Racing Series at the Long Beach Grand Prixe to help raise awareness in his role as a NF Hero!!
JT is incredibly honored to participate, and we would both like to ask our family and friends to please take a moment to donate in his name to CTF in support of this amazing opportunity! Every dollar helps, and we thank you with all our love for your ongoing support in this battle!
Remember to never ever give up!
JT is super excited to serve as a Nf Hero at the Long Beach Grand Prixe with CTF's Racing for Research team! Please take a moment to visit his page, share, and donate if you can. It is the support of our community that is Fueling the Cure!
Thursday, March 28, 2013
Reckoning
I have been languishing in a state of survival while taking the chemotherapy Votrient for the past year. My most recent MRI report contained a word I have a love-hate relationship with: Stable.
Have you ever woken up and decided to be someone else?
Last year I woke up and I was not a runner anymore.
I didn't have long hair anymore.
I couldn't allow my children to go to public school anymore.
I refused to do math while trying to eat anymore.
I refused to hate myself for being born broken anymore...
Anymore...
I changed, maybe for the best... maybe not.
Then I came here, to my blog, where I used to see a blank page as a personal challenge, and I stared at the title and thought, "How can I continue to be the Fabulous Running Mommy if I do not run anymore?
Anymore...
Yet, here I am...
I go to Crossfit almost every day and leave covered in sweat with a smile.
I chopped my last remnants of hair, dyed it blue, and dared the world to argue.
I gave up spending my mornings in pajamas and brought my children home to educate them the way I see fit.
I grew tired of my mind always being slowed down by disease, and started reading novels worthy of my time again.
I found that I have value beyond simply existing.
I have known that at some point I would need to rectify my past and current states of being. That is where I am now.
For now...
I am taking a break from the pile of pills I was swallowing every morning.
My mind is clear, the future seems promising, and I am learning what it feels like to believe I am not dying more then living.
I continue to run.
I run my life, I run my home, I run forward... but never in circles.
I would say I am back... but I never left.
Have you ever woken up and decided to be someone else?
Last year I woke up and I was not a runner anymore.
I didn't have long hair anymore.
I couldn't allow my children to go to public school anymore.
I refused to do math while trying to eat anymore.
I refused to hate myself for being born broken anymore...
Anymore...
I changed, maybe for the best... maybe not.
Then I came here, to my blog, where I used to see a blank page as a personal challenge, and I stared at the title and thought, "How can I continue to be the Fabulous Running Mommy if I do not run anymore?
Anymore...
Yet, here I am...
I go to Crossfit almost every day and leave covered in sweat with a smile.
I chopped my last remnants of hair, dyed it blue, and dared the world to argue.
I gave up spending my mornings in pajamas and brought my children home to educate them the way I see fit.
I grew tired of my mind always being slowed down by disease, and started reading novels worthy of my time again.
I found that I have value beyond simply existing.
I have known that at some point I would need to rectify my past and current states of being. That is where I am now.
For now...
I am taking a break from the pile of pills I was swallowing every morning.
My mind is clear, the future seems promising, and I am learning what it feels like to believe I am not dying more then living.
I continue to run.
I run my life, I run my home, I run forward... but never in circles.
I would say I am back... but I never left.
Wednesday, October 17, 2012
Long Beach Marathon 2012!
Well here I am 5 years later, a little older, a lot slower, and very happy. This year the NF Endurance Team hit the Long Beach Int'l Marathon, and I was there to serve as a Team Captain for my 5th year in a row. I doubt that really surprises anyone, but the real icing on this year's cake was my Dad ran the 5K with me! Yes, he put down the cigarettes, laced up his running shoes, and used his long lean legs to lope just a bit in front of me all the way to a huge finish! I was so proud of him, he really is built to be a runner and I hope he continues to RuNFor a Reason... ME haha, ok and JT. Speaking of JT, my amazing lil' man once again smashed the Aquarium of the Pacific Kids' Fun Run along with his friend and teammate Haley Cruz. The kids did a wonderful job, and Mica did her part shaking her yellow NF Endurance Team Bell as loud as she could while we all cheered JT and Haley to a strong finish!
I met several new friends, and we welcomed another family into our close-knit team. Team eNouF kicked fundraising booty this year, and it was great to meet another group of passionate people working hard for a cure.
On top of all of this, my parents booked an amazing 2 bedroom suite overlooking the quiet gray pacific. In between networking and team duties, we were able to sneak away "just us 6" for some much needed family time. Paul worked hard all weekend loading, unloading, carrying, setting up, and just generally helping wherever he could. As I said during my talk at the annual Team Pasta Dinner, thank you Paul, you are my best friend and I love you. (awwww, mushmush)
So to conclude... yes finally... it was a wonderful weekend, I was able to see people I adore, raise money for a great cause, cross a finish line with my Daddy and cheer for my only son as he did what he does every time, make me so incredibly proud of who he is.
You can check out an article I was interviewed for in the Long Beach Press Telegram here: http://www.presstelegram.com/ci_21720894/long-beach-marathon-participants-had-reason-run
You can see our fundraising page, and if you are so inclined, we are of course still taking donations. In fact, we will be until a cure is found HA
http://ctf.kintera.org/faf/home/default.asp?ievent=1008232#.UHT6awtqmOw.facebook
And finally, you can see all the photos I took here! Why are my children painted as zombies?? They sat for a make up session to earn Momma some free tickets to a Zombie Festival! Minions come in handy these days...
I met several new friends, and we welcomed another family into our close-knit team. Team eNouF kicked fundraising booty this year, and it was great to meet another group of passionate people working hard for a cure.
On top of all of this, my parents booked an amazing 2 bedroom suite overlooking the quiet gray pacific. In between networking and team duties, we were able to sneak away "just us 6" for some much needed family time. Paul worked hard all weekend loading, unloading, carrying, setting up, and just generally helping wherever he could. As I said during my talk at the annual Team Pasta Dinner, thank you Paul, you are my best friend and I love you. (awwww, mushmush)
So to conclude... yes finally... it was a wonderful weekend, I was able to see people I adore, raise money for a great cause, cross a finish line with my Daddy and cheer for my only son as he did what he does every time, make me so incredibly proud of who he is.
You can check out an article I was interviewed for in the Long Beach Press Telegram here: http://www.presstelegram.com/ci_21720894/long-beach-marathon-participants-had-reason-run
You can see our fundraising page, and if you are so inclined, we are of course still taking donations. In fact, we will be until a cure is found HA
http://ctf.kintera.org/faf/home/default.asp?ievent=1008232#.UHT6awtqmOw.facebook
And finally, you can see all the photos I took here! Why are my children painted as zombies?? They sat for a make up session to earn Momma some free tickets to a Zombie Festival! Minions come in handy these days...
Wednesday, October 3, 2012
My Inspiration
This weekend I will return to the Long Beach Int'l Marathon to serve as co-captain of the LB NF Endurance Team for my 5th time. When I reflect over the past five years I see a lot of ups and downs, but more importantly I see a permanent change I have made within myself. I have been filled with positivity, with motivation, and with a sense of community that comes from fighting side by side with others who live through the same battles, and much worse even, every day. I am inspired by people who go through so much more and do so much more then I could ever hope to do. These amazing people in our NF community fill me with hope and propel me forward on every course I have ever raced. I know that when I am spending time in the Hello Kitty Cave, or taking time off to just pretend our problems don't exist, these NF Warriors are still out there. I hope they all know when they need time to take a step back from the community to focus on their own families, as I have over the last year, that I will do my best to have their backs as they have mine. Every time any of us lead a support group, reach out to a newbie who is terrified by a recent diagnosis, lobby for research funds, run or walk to fundraise or donate out of our own pockets toward our shared goal of curing this devastating disorder, we are all supporting this amazing community that is the only silver lining to this damn thing we all live with every day. Together, that is exactly what we do... We live. We breathe, we love, we share, and oh yes we fight just as surely as any other family. So on race day these are the people in our NF community who consistently fuel my drive by supporting me directly as well as inspiring us all...
Jimmy Jackson... Now many of you are lucky enough to consider Jimmy a close friend, because he has a way of making everyone feel like his friend. I don't know how many times Jimmy has stepped up when needed to keep the NF2 Crew functioning and happy, but he took over for me when I couldn't handle the strain of moderating such a large group, and he helped everyone get along as only he can, with simplicity and kindness.
Tracy Galloway... Tracy's daughter was diagnosed as a teenager and Tracy has made it her mission to save her by any means necessary. This woman learned more about NF in one year then most of us who have been involved over 20 or even 30 years have! She asks specific questions, and if there is no answer she asks why not? She steps up to help in any way she can constantly, whether it is as a friend or in a professional role. She is efficient, intelligent, opinionated, and just one hell of a woman.
I will only name one more person, although there are so many more, and that is Bob Skold. He works at CTF for the NF Endurance Team, and has gone above and beyond to fill that role over the years. He has run over 50 marathons for the cause, as well as an ultra marathon or two! He is modest, he rarely can answer when I ask what his finishing time was, instead focusing on all the people he is intent on helping via his role on the team. So imagine my surprise when I was lucky enough to line up at a starting line with him one year and he left me in his dust! He has this elegant lope, and a steady determination that gets him across the finish line every time, whether it is a literal or proverbial race. The team has changed a lot recently, but Bob remains as dedicated as ever.
I hope each of you, Jimmy, Tracy, and Bob knows I am sending you love and gratitude from the pavement this Sunday. Thank you from the bottom of my heart for inspiring me every day.
Jimmy Jackson... Now many of you are lucky enough to consider Jimmy a close friend, because he has a way of making everyone feel like his friend. I don't know how many times Jimmy has stepped up when needed to keep the NF2 Crew functioning and happy, but he took over for me when I couldn't handle the strain of moderating such a large group, and he helped everyone get along as only he can, with simplicity and kindness.
Tracy Galloway... Tracy's daughter was diagnosed as a teenager and Tracy has made it her mission to save her by any means necessary. This woman learned more about NF in one year then most of us who have been involved over 20 or even 30 years have! She asks specific questions, and if there is no answer she asks why not? She steps up to help in any way she can constantly, whether it is as a friend or in a professional role. She is efficient, intelligent, opinionated, and just one hell of a woman.
I will only name one more person, although there are so many more, and that is Bob Skold. He works at CTF for the NF Endurance Team, and has gone above and beyond to fill that role over the years. He has run over 50 marathons for the cause, as well as an ultra marathon or two! He is modest, he rarely can answer when I ask what his finishing time was, instead focusing on all the people he is intent on helping via his role on the team. So imagine my surprise when I was lucky enough to line up at a starting line with him one year and he left me in his dust! He has this elegant lope, and a steady determination that gets him across the finish line every time, whether it is a literal or proverbial race. The team has changed a lot recently, but Bob remains as dedicated as ever.
I hope each of you, Jimmy, Tracy, and Bob knows I am sending you love and gratitude from the pavement this Sunday. Thank you from the bottom of my heart for inspiring me every day.
Monday, August 6, 2012
Tomorrow
Time rolls under my feet like asphault beneath my wheels on a road trip toward a horizon that seems so close it burns my flesh. The stench of decay settles wearily upon me, I take no notice of it. It was there the day I was born, and will undoubtedly follow me to the grave. Love expounds from my bloody heart, the day it lies dry the destination will have been found.
Will it be all we expect it to be? Much more, or frighteningly less? Why is my blog always so damn emo? If you know me at all you know a few things about me:
I never shut up. Ever. Right now I have simply exchanged speech for text.
I am highly opinionated, but only moderately educated, and slightly indignant.
I brake for tail-gaters. 'Tis true.
I brag about my children a lot, and when other parents don't, I wonder "Why not?"
I browse other people's blogs and wonder why I am not as fun, or fashionable, or talented, or motivated. I think that we all feel that way, but still feel slighted and unecessary.
Moderation is not in my repertoire of prior experience.
I long to have some sort of kitchy, stylish, up-cycled, mint-colored blog about all of Mica's newest clothes from Target and JT's latest fascination with losing teeth.
Tomorrow, I will be her.
Will it be all we expect it to be? Much more, or frighteningly less? Why is my blog always so damn emo? If you know me at all you know a few things about me:
I never shut up. Ever. Right now I have simply exchanged speech for text.
I am highly opinionated, but only moderately educated, and slightly indignant.
I brake for tail-gaters. 'Tis true.
I brag about my children a lot, and when other parents don't, I wonder "Why not?"
I browse other people's blogs and wonder why I am not as fun, or fashionable, or talented, or motivated. I think that we all feel that way, but still feel slighted and unecessary.
Moderation is not in my repertoire of prior experience.
I long to have some sort of kitchy, stylish, up-cycled, mint-colored blog about all of Mica's newest clothes from Target and JT's latest fascination with losing teeth.
Tomorrow, I will be her.
You may know...
Time rolls under my feet like asphault beneath my wheels on a road trip toward a horizon that seems so close it burns my flesh. The stench of decay settles wearily upon me, I take no notice of it. It was there the day I was born, and will undoubtedly follow me to the grave. Love expounds from my bloody heart, the day it lies dry the destination will have been found.
Will it be all we expect it to be? Much more, or frighteningly less?
Why is my blog always so damn emo? If you know me at all you know a few things about me:
Why is my blog always so damn emo? If you know me at all you know a few things about me:
- I never shut up. Ever. Right now I have simply exchanged speech for text.
- I am highly opinionated, but only moderately educated, and slightly indignant.
- I brake for tail-gaters. 'Tis true.
- I brag about my children a lot, and when other parents don't, I wonder "Why not?"
- Moderation is not in my repertoire of prior experience.
However, you may not know that:
- I browse other people's blogs and wonder why I am not as fun, or fashionable, or talented, or motivated. I think that we all feel that way, but still feel slighted and unecessary.
- Pretty much all of my favorite people are politically conservative, Atlas Shrugged is one of the best books I have ever read, and I <3 a="a" completely="completely" dr.="dr." in="in" laura="laura" lesbian="lesbian" way.="way.">
- I long to have some sort of kitchy, stylish, up-cycled, mint-colored blog about all of Mica's newest clothes from Target and JT's latest fascination with losing teeth.
- Tomorrow, I will be her. My blog will be coral... or was it mint?
Monday, July 23, 2012
La vita รจ bella!
I blogged this ages ago and for some reason it did not post, this is what happened when I had a reaction to the Votrient but was unable to get care because my Neuro-Oncologist, Dr. Barth, prescribed me a drug off label and then closed his office without any further instruction. Several people in my entourage (yes, I have an entourage) expressed dismay along with me, but then also anger. I want to clarify I am not angry at Dr. Barth, quite the opposite, I am grateful I was referred to him before his office closed. In the short time I was his patient he accomplished something no one has ever done for me or anyone in my family before... he went off-protocol and tried something different. There is no cure for NF, no true treatment, but he is trying. I will be his guinea pig any day. So this is how it worked out a couple of months ago:
So yesterday my impatience won out and I called Dr. Barth's office to explain the entire rash debacle. The receptionist sat through my diatribe about breaking out in a rash from the Votrient and nobody being willing to treat me because Dr. Barth prescribed the Votrient off-label, he then transferred me to 2 other people who listenened to the same spiel, until finally I was passed around to a Nurse Practitioner. Yes! She asked a zillion questions and then prescribed a small pack of steroids and said if that does not clear it up then to call back and they will figure it out from there. Score one for me! So I am starting the steroids tomorrow morning, but today was a long, itchy, beautiful day. Mica and I had 6 hours to kill in Riverside while waiting for JT to complete his weekly classes at the charter school. We parked in downtown near Mission Inn and spent the entire day exploring the library, Mission Inn, and surrounding statues and art. The day was an entire moment frozen in time filled with Mica's hair swishing in front of me, her sideways grin at her own jokes, and lots of slugbugs and tickle monsters. It was the best day I have had in so long, and my heart is just filled up to overflowing from plurp kisses and shared giggles.
Back to the present...
So yesterday my impatience won out and I called Dr. Barth's office to explain the entire rash debacle. The receptionist sat through my diatribe about breaking out in a rash from the Votrient and nobody being willing to treat me because Dr. Barth prescribed the Votrient off-label, he then transferred me to 2 other people who listenened to the same spiel, until finally I was passed around to a Nurse Practitioner. Yes! She asked a zillion questions and then prescribed a small pack of steroids and said if that does not clear it up then to call back and they will figure it out from there. Score one for me! So I am starting the steroids tomorrow morning, but today was a long, itchy, beautiful day. Mica and I had 6 hours to kill in Riverside while waiting for JT to complete his weekly classes at the charter school. We parked in downtown near Mission Inn and spent the entire day exploring the library, Mission Inn, and surrounding statues and art. The day was an entire moment frozen in time filled with Mica's hair swishing in front of me, her sideways grin at her own jokes, and lots of slugbugs and tickle monsters. It was the best day I have had in so long, and my heart is just filled up to overflowing from plurp kisses and shared giggles.
Back to the present...
I am still on Votrient, and now have a new neuro-oncologist who I really like. He seems modern and informed. He agreed to keep me on the drug, and I am feeling great. I plan to see stability or shrinkage on my next MRI scans in November. That is right, I said it, I spoke it, and it will be! Positive thinking may not change concrete matter but it shapes my perspective so that I can wake up with a smile every day. Why not? La vita e bella!!
Thursday, June 21, 2012
NF Endurance hits Long Beach 2012!!
With summer promising late nights of freedom mingled with long hot days of sunburns and blue pools, I turn my attention toward my favorite event of the year…Serving as Team Captain for the mighty NF Endurance Team at The Long Beach Int’l Marathon on October 7th! This year I have a lot to run for…
Now the last year has been a bit complicated and heart-breaking for me. While the swelling that threatened my vision has completely subsided, it did leave a small amount of cognitive impairment behind. What that basically equates to I have a harder time processing and applying the information. So I take things a bit slower, and ask people to write more often. It is a blessing that the only permanent damage done is a completely manageable. I am ecstatic to say that as of today every single tumor I have had treated with Gamma Knife is shrinking. Was it easy? No. Were there side effects? Yes. Do I blame Gamma Knife or Dr. Duma? No, I blame the fact that I have NF2. I made the right decision for myself, and would make it again. Now I am moving forward with my new neuro-oncologist and will finally meet him this coming week. I am feeling great and getting into a groove, ready to hit Long Beach with everything I can…
As time marches on I find that my son JT now has his own little spot on these updates beyond telling you all that he is fabulous, hilarious, and crazy smart… I now have to keep those who are in our circle updated on his tumor progression. It breaks my heart in a million pieces, but I am a mother and a wife, so I do what any of us would do, what many of us do, what you would do… I put on a smile and do what I can. I take it a day at a time. *Deep Breath* By doing Delayed Contrast MRIs, the doctors at NIH are able to see which areas of the Hearing, Vestibular, and Facial nerves are absorbing more or less contrast, telling them where miniscule tumors have begun to develop before they are even visible or measurable. We were recently told that JT has small areas of developing tumors on every nerve in his IAC (Internal Auditory Canal.) Now, the doctors say that right now there is nothing we can do but twiddle our thumbs. I say to heck with that, we can RUN!
The Children’s Tumor Foundation is the largest private funder of NF research. “How?” you may ask? By funding clinical trials, targeting medications that already have FDA approval for other uses, by using a stringent review process for all grants given, by educating the NF community and supporting NF Clinics. In all of these ways I have personally and repeatedly been impressed by the Children’s Tumor Foundation. If we are to find a cure sooner, rather then later, then we all have to throw our weight behind the largest vehicle we have, and that would be CTF.
So you have read enough? Are you ready to get involved and do something positive? Get it! Follow these steps:
1) Sign up with the team at: http://ctf.kintera.org/NFELongBeach2012
2) Register for the event at: http://runlongbeach.com/
3) Show up and Kick Ass!
Questions? Comments? Want to volunteer? Email me: Okamador@aol.com
Now the last year has been a bit complicated and heart-breaking for me. While the swelling that threatened my vision has completely subsided, it did leave a small amount of cognitive impairment behind. What that basically equates to I have a harder time processing and applying the information. So I take things a bit slower, and ask people to write more often. It is a blessing that the only permanent damage done is a completely manageable. I am ecstatic to say that as of today every single tumor I have had treated with Gamma Knife is shrinking. Was it easy? No. Were there side effects? Yes. Do I blame Gamma Knife or Dr. Duma? No, I blame the fact that I have NF2. I made the right decision for myself, and would make it again. Now I am moving forward with my new neuro-oncologist and will finally meet him this coming week. I am feeling great and getting into a groove, ready to hit Long Beach with everything I can…
As time marches on I find that my son JT now has his own little spot on these updates beyond telling you all that he is fabulous, hilarious, and crazy smart… I now have to keep those who are in our circle updated on his tumor progression. It breaks my heart in a million pieces, but I am a mother and a wife, so I do what any of us would do, what many of us do, what you would do… I put on a smile and do what I can. I take it a day at a time. *Deep Breath* By doing Delayed Contrast MRIs, the doctors at NIH are able to see which areas of the Hearing, Vestibular, and Facial nerves are absorbing more or less contrast, telling them where miniscule tumors have begun to develop before they are even visible or measurable. We were recently told that JT has small areas of developing tumors on every nerve in his IAC (Internal Auditory Canal.) Now, the doctors say that right now there is nothing we can do but twiddle our thumbs. I say to heck with that, we can RUN!
The Children’s Tumor Foundation is the largest private funder of NF research. “How?” you may ask? By funding clinical trials, targeting medications that already have FDA approval for other uses, by using a stringent review process for all grants given, by educating the NF community and supporting NF Clinics. In all of these ways I have personally and repeatedly been impressed by the Children’s Tumor Foundation. If we are to find a cure sooner, rather then later, then we all have to throw our weight behind the largest vehicle we have, and that would be CTF.
So you have read enough? Are you ready to get involved and do something positive? Get it! Follow these steps:
1) Sign up with the team at: http://ctf.kintera.org/NFELongBeach2012
2) Register for the event at: http://runlongbeach.com/
3) Show up and Kick Ass!
Questions? Comments? Want to volunteer? Email me: Okamador@aol.com
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