Waiting

I'm trying to be patient, really I am, but it has been over a week since my MRIs and still no word. No growth? Emergency situation? Could be anything. I've been on the propolis for a year, and if I have had no tumor growth during that time I will be ecstatic. If I have had growth I am not sure what to do. I will face that if I ever have to.

Last night I lay in bed trying to sleep, thanking the Goddess for all my blessings. I am truly blessed, I love my family and my life. Out of nowhere it occured to me JT will be 6 next month. When both my Mom and I were about age 9 we each developed a tumor in our T spine. In only 3 years I may have to face the idea of JT having a tumor? Inconceivable. Completely unacceptable. My heart is breaking and my mind feels fuzzy. Just the idea, I shudder. My mind's eye traces a scar down his perfect back, marring the smooth tan skin between his shoulders. I see him still and in pain, crying. I can't let it happen. Did my own parents feel this? I am sure they did, and this is exactly why no one wanted me to have children. I was warned, the pain, the fear, the terror involved with helplessly watching your own child be put through things grown men would run from... Now here I am for myself, and it has not even happened yet and I am already breaking to pieces inside just contemplating the possibilities.

They were all still wrong, I would never ever have traded this for not having JT. He saved my life, he gave me life as surely as I did him. Before him nothing mattered, everything was disconnected, I was only visiting here in this life and would have burned out like a lightbulb, dead inside with the world carrying on around it. Then JT came to be and suddenly, I breathed for the first time. He's my original partner in crime, my love bug, my baby boy. If he has to go through this, I'll carry him through it as much as I can. I just pray, with everything in me, that somehow, someway, the researchers make some sort of amazing breakthrough and my son will never ever know the violation of being cut open on an operaring table. So again, we'll face it if we have to, together.

Starting off the week...

Saturday I couldn't finish my 10 miles on the treadmill! I've been running or walking uphill everyday this week, it finally took its toll on me. I was exhausted trying to keep going after 5 miles, around 7 I finally just stopped. I hate that feeling, I failed to achieve my short term goal. I'll make up for it next weekend with a solid 11 miles on the street, no more long runs on treadmills. It is too boring, my mind runs in circles and I just can't get into a rythm...





This weekend was so fun! Saturday night a bunch of my friends joined me to party it up at a local club. We drank, danced, and ran around all night. We closed that place down and Paul dragged me to the car and got me home safe. Yesterday we did nothing alllll day, which is the best way to spend a Sunday.

Now it's time to start the week, off to playschool, then a playdate... then shopping, cleaning, baking, then cooking, more cleaning, some serving, baths and bedtime, a little more cleaning.... then I will finally relax!

A stolen moment...

Just got back from the gym again, ran 5 miles and then strength trained. I picked Mica up from the childcare. As I walked into the Kids' Club she ran on her chubby little legs to me, her exuberant face looking up at me with squeals of Mommy Mommy!! I swooped her up and she buried her face into my neck, wrapped her little self around me and popped her thumb in her mouth. Just that one moment, that small piece of time, makes every other day worth living. I'll tuck away the memory, and in the dark times I can pull it out and gaze at it, living in it and escaping from whatever may come. Mica is the first child born in my maternal family without NF2 in 4 generations. She is our little miracle, and I bury my greatest hopes in her. She has this amazing personality, a perfect mix of all my favorite people. She is mine, my baby girl, and moments like these are the images that make up my soul...

What if Megan Fox did wear Spanx?

I hate Megan Fox. Seriously, who looks like that? I have to constantly remind myself she has not pushed out 2 perfect and beautiful children, but something tells me if she ever does she will still look gorgeous doing it. Ok so I am being a hater, too bad, we all do it sometimes. At least I'm hating on a celebrity and not someone I know! I did a quick 2 miles at Redhill Park this morning, which has a couple nice little hills to push the stroller up. Then I headed to the gym and got on the elliptical until I had burned 500 calories, I pushed and it took about 40 minutes. Headed upstairs for strength training and was doing great until I was summoned by the child care girl to change a dirty diaper. Mica was not about to go back at that point so we are at home, and I'm sucking down lots of protein. Only 2 days until my birthday party and my little red dress, something tells me I will be wearing spanx. I don't think Megan Fox ever has to wear spanx, another reason I hate her...

NBC Pioneers Online Captioning!

Have you ever missed your favorite show and assumed you could just catch it later on the internet? Being deaf that is not possible, with all of the amazing technology available, major networks have claimed they just don't have the capabilities to offer captions for there online viewers. We have all known for a long time that is just ridiculous, of course they have the capability, they just didn't care! Now at long last NBC has stepped forward as the first major network to offer captioning on their website! Yes! You can watch full episodes of Heroes, 30 Rock and even Last Comic Standing WITH subtitles! Who is next? Come on ABC, step it up, we're waiting!!!

Read all about it here: http://www.tvjots.com/2007/09/nbc-gets-with-program-and-offers.html

Another Hill?

This morning I took Mica to her 45 minute playschool class and took off on a run. I raced down a local 1 mile hill then ran straight back up. It was a pretty steep hill so I felt a real sense of accomplishment as I jogged back to pick up Mica! I also wrote a letter for my fundraiser today to snail mail out to my contacts who are not online. Yes these people exist! No it's not my Nani, who is online all the time and plays casino games daily! Here is the letter, although I have raised my goal amount of $3000, I am still pushing to raise as much as possible in the next couple of weeks as I count down to my first fundraising race at Long Beach...

"Dear Friend or Family member,

As you probably know I was born with NF2, a genetic disease that causes tumors to grow throughout my brain and spine. The disease has left me deaf… I can no longer sit around a table and talk with my family… I have not heard music in 5 years, my head is filled with ringing and silence… I have never heard either of my children laugh…

NF2 has also put me through several difficult and painful surgeries. Worse, it has taken my Grandma Norma, Uncle Eric and Mom from me all at unbearably young ages. Even my son JT suffers from the disease already, he was born blind in his right eye. The only way to give JT and me a healthy future is to support research into drug therapies to stop the tumor growth associated with this horrible genetic disease.

Often times when family is afflicted with a painful disease we don't know what to do. We want to help, but don't know how.

The Children's Tumor Foundation is a great cause which focuses on finding a cure for NF2. We are very close to finding a drug therapy that can extend my life and give us true hope for a healthy future.

The NF Marathon Team is one of the tools the CTF employs to raise money. There are hundreds of runners participating in races all over the country. There are people with NF as well as family and friends on our team. I have been training and running for the past 6 months in preparation for the Long Beach marathon on October 11th, I will run 13.1 miles for a cure! I am asking you now to join me by donating in my name to CTF. Every little bit helps, and JT and I are forever grateful to all our friends and family who join us in our fight. Donating is easy, just write a check to "Children's Tumor Foundation" and return it with the attached slip in the pre-paid envelope!

Thank you all so much for your support, you can follow my progress as I run for NF2 at http://www.fabulousrunningmommy.blogspot.com/.

Love to All,

Olivia Hernandez and Family"

Another Day, Another Hill...

I am so sore! I am seriously turning up the heat this week and next with my training. Today Wendy and I did 6 miles, half of it was straight uphill! WITH the strollers! It took us forever but we finally puffed our way to the top, and the walk back down was a breeze. I would love to reward myself with some chocolate and something salty and gooey, but just for now I am eating pure. Veggies, fruits, whole grains... nothing processed or with preservatives until after the run. Let's see if I can stick to that! Actually, right now it's about 5, JT has to be at karate at 6, I've been at his allergist since 3 and have no time to make anything healthy! Looks like drive-thru to the rescue, when is somebody going to open a healthy fast food place!? I ate healthy all day AND did my uphill walk, I deserve something yummy!

Happy Birthday to ME!

Well I am 26 as of today. It has also been exactly 4 years since Paul first told me he loved me. What a long way we have come! I had a great birthday, and a fun pre-bday weekend in Vegas with my Dad and Tish. I skipped out on my long run to enjoy family time, but paid for it today with a difficult and sluggish 3 miles. I will be pushing myself all week, up until October 5th, in preparation for the Long Beach Marathon. After the 5th I will relax a bit and prepare myself for a 13.1 mile race!

As much as I love all the attention from having a birthday, after all I am an only child, they seem to be more bittersweet the older I get. I am only 26 but since I turned 25 I have felt as though I am "middle aged" if not past that. I think of my Mom at this age, and remember how her tumors started growing completely out of control around this point in her life. She went from being an active typical young Mom, to being completely bed-ridden within a few very short years. I am my Mother, I have felt that way for a long time. If you compare our MRIs at specific ages, we follow similar growth patterns. I am doing everything within my power to break the cycle, to stop the growth. I'm taking propolis, eating healthy (fat feeds tumors) and running to keep my body strong and raise research money at the same time. There is not much more I can do! I take that back... I can hope. As long as I still have hope, I am still winning the battle. So Happy Birthday to me, and "many more..."

In the Tube...

I finished the 2nd half of my MRI's today. It was so incredibly uncomfortable staying completely flat and still for 45 minutes straight for the thoracic study. My pace started to quicken and I glanced around the tiny tube which suddenly seemed infinitely smaller then when I had first entered. I knew there was nothing to be done, and no reason to panic, so I just gently breathed in and out, and willed myself to relax. I dozed off and on, lingering somewhere between the realms of dreams and consciousness, the mat vibrating harshly and numbing my thoughts. Suddenly it was over as quick as it had started, and I found myself stumbling out into the daylight to face reality. Dr. Duma will have results early next week, and I pray I have had no changes that would explain the creepy heavy feeling that has worsened throughout my entire left side. I'm drained today, tripping around the house, forcing myself to smile as I help with homework and serve up leftovers. A glass of wine and a good book call to me, but I have to wait until after bedtime, definitely don't want to be Drunk Mommy. At least I have another 6 months before I have to have another MRI, that is always a good feeling.

11 Miles to kick off a difficult week...

Even with my heels still all cut up, looking like I have a flesh-eating virus, I ran 11 miles yesterday! It felt really good, I was sore but in a good way after. Today I decided to walk Mica to school, it's almost 2 miles ALL uphill. It burned my thighs but the walk back home was a breeze! I am taking a well-deserved day off tomorrow. My mother-in-law is having a hysterectomy right now and I want to be available to help all that I can. She is a wonderful MIL, always supportive and loving. It is so hard not having my own Mom, but if she could have picked a MIL for me I know she would have adored Virginia. Tish too of course but that is a whole 'nother post! Why are you nervous Tish? I wont spill your business don't worry!!

Me and Virginia at Knott's Berry Farm!

Maybe I should go to medical school...

Yesterday I saw a gynecologist about my ovarian cysts. I have had a lot of pain where no woman should ever have pain, and an ultrasound turned up ovarian cysts. My neurologist said it could possibly be related to NF2, and more then a few women on the Crew have had similar problems. I waited a month to see this doctor. She walked into the room and told me everything was normal. I told her no, I have ovarian cysts. She said yes, that that was normal. I explained to her I have NF2, and that I was experiencing severe pain, and still she refused to do anything. I asked her what I should do for the pain, and she suggested pain medication. I am going to save my rant about doctors irresponsibly prescribing addictive painpills to patients when they are too lazy or indifferent to an ailment. Suffice it to say I very clearly explained to her I was not looking for a pat on the back or a sympathy prescription. I told her pain down "there" is not normal. She said yes, it is. I understand that cysts are not a huge deal, but given my descriptions of pain and my medical history she could have at least suggested monitoring the growths in a few months, the only thing she would write, repeatedly, was "There is nothing I can do." After driving all the way to Pomona and sitting in a dingy waiting room for an hour with a cranky 2 year old, she was wasting my time with this nonsense? I looked her right in the eye as I stood and told her I was going back to my GP for a "real referral." Why do people who have no urge to help people become doctors?

Today I had my lumbar spine and neck MRIs. I had a really awesome tech who was amazingly friendly! I always have to deal with supposed professionals who eye me cautiously because I am deaf but can speak as a hearing person. What reason could I possibly have for pretending to be deaf? The girl took me in and was ready with paper and a pen, being very thorough and making sure I was comfortable. After my MRIs I asked her to be sure to request my previous MRIs from the last MRI place I had been (a whole 'nother story!) so that they could compare my tumors, she chirped happily that it was already done! You have no idea how amazing it is to come across somebody in the medical field who actually acts without being instructed, it was great to be the patient and feel cared for!

I will have the second half of my MRIs next Thursday and then wait patiently for my neurologist to review my scans. Pray that I have had no growth and the Propolis is working! I don't know how to respond if it isn't... I spent the rest of today running errands but feeling very lethargic, MRIs are not painful or even intimidating to me in any way, but somehow they always leech all of my energy. I stumbled through the day with the kids and am looking forward to Paul getting home momentarily and sitting down to a big bowl of spaghetti squash, and definitely a glass of wine!

Dream of a Day...

This week has really gotten away from me. I thought I had just posted here "yesterday," and yesterday turns out to be Saturday! I finally see a doctor about my ovarian cysts tomorrow morning. I am nervous and trying to just stay positive. The next day I have the first half of my MRIs. My 26th birthday is in a couple of weeks, I hate that my MRIs coincide with my birthday! The idea of aging and traipsing that much closer toward my 30's, combined with the anxiety surrounding MRI results, leads to a bit of a stressful month. Around my age my Mom's tumors started growing out of control, there were so many growing at each MRI they couldn't count them all. My Grandma also had increased growth in her 30's. So while to many people 30 means a sense of accomplishment, of leaving behind the whirlwind of your 20's, to me it feels like an inevitable march toward a fate I would rather avoid. I don't want to be Debbi Downer over here, I know technology has improved tremendously just in the 10 years since my own Mom turned 30. That is why I run! To try to do my part in raising funds for research so we can cure NF2! I run so I can dream.... dream of a day I can wake up and not feel like a scythe is hanging precariously over my head... dream of a day I can watch my kids play and not wonder if I will live to see them grow... dream of a day when I don't have to stop myself from wondering who my husband will give his heart to when I am gone... dream of a day when the need for melodramatic morning blogs are unecessary, because my only concerns will be trivial and I will be ecstatic to live in normalcy. It will happen, and as of this morning all I can do is run, so that is what I am going to do...

I am still $75 away from meeting my fundraising goal! Even if you can only donate $10, that puts me that much closer to achieving my self-imposed quota! Visit my fundraising page: http://www.active.com/donate/nflongbeach2008/OHernan4

MudRun!

Should have been called Mud Obstacle Course! This thing was 6.2 miles of insanity! The course was 3.1 miles so for the 10k you had to do everything twice! It started with jumping over huge pipes and haystacks, then came to an incredibly steep hill, after that were a ton of small hills in succession with water pits in between! Then more huge dirt mounds that were so steep I had to slide down! Half of the 2nd mile was directly uphill, so steep we were at a total incline! We raced down the other side, hopped a series of 6' walls, then attacked a whole bunch more hills and water pits, some of which had tape over the top so we had to crawl underneath! The entire thing was punctuated by explosions and helicopters! We trudged up around the bend and realized we had sharp gravel in our shoes! We dug it out as best we could and then did it all AGAIN! We must be crazy! Most people just did the 5k, the other people on the 10k were mostly hardcore athletes who were way ahead of us. We finished second to last HA! I don't care how long it took, the point was we took each obstacle as it came, put one foot in front of the other, and never gave up! Reminds me of living with NF2 while being saturated with mud! The pictures show the easiest part of the course that went along the spectator space, trust me when I tell you these were the smallest hills and most shallow pits! We finished the run and got rinsed off by a bunch of firemen! My friend Michelle was there taking pics, check out her page for pics of her boys doing the kids Fun Run! I was so jealous they got cute little medals, I wanted a medal!

I'm home now and ready to do absolutely nothing for the rest of the day!!

My Love...

Last night Paul and I went and saw a muay thai kickboxing event at San Manuel Casino! It was really raw! There was one female fight and it was insane. I have never seen someone get punched straight in the face so hard in person before. I kept cringing and squeezing my eyes shut! Paul kept his strong arm wrapped around me the entire night, and later as I drifted off to sleep with our feet lightly touching I looked back on how we met...

I have actually known my husband Paul since I was 15 years old and a new student at Valley View High School in Ontario. I was a junior and he was a senior, we immediately hit it off and became the best of friends.

1998

Valley View

When Paul graduated I was there for every moment of it, in fact when he "rang the bell" to symbolize finishing the last of his work he kept the whole school waiting while someone found me!

1999

Paul's Graduation

My senior year was horrible! Paul had graduated and I had no one to hang out with anymore. I had my first brain surgery to remove a vestibular schwannoma on the left side, after 3 months of painful recuperation I returned to high school half deaf. The ringing in my head was so loud for the first 6 months that I could not use the phone or understand most speech. Paul stayed by my side through it all and would even sit on the relay phone with me as if nothing was out of the ordinary. It was such a lonely and painful time for me, and Paul was the best friend a girl could have. Even now I have the journals saved where I would doodle his name all over the edges! Whenever I was upset, I could drive to Paul's Nina's where he lived in the converted garage. Around the time I graduated and finally became single, I found out a girlfriend of mine who knew full well I liked Paul purposefully set her sights on him! He kissed her, and naively told me about it! He seriously couldn't grasp why I was upset, I swear men can be so incredibly oblivious! After 3 years of friendship I finally yelled, "I'm mad because I like you stupid!" and slammed down the phone!!! He called back and said well of course he liked me too! Our first date we went and saw the Blair Witch Project, he kissed me and the world swooned, or maybe that was from the camera shaking on the movie, either way I got sick as we left! For a couple of years Paul and I dated on and off, we never went steady, we were young and just having fun. Everytime something serious would happen, if I was hurt or scared, I could run to Paul. Eventually we lost touch for about a year, and when we finally saw each other again it was as though we knew it was fate. We had both been through unspeakable drama since we had been apart and had lost our innocence. In Paul I found a bit of who I had been before the pain, in him I found someone who loved me for who I had been and who I was now. 4 years ago this month Paul took me to the LA County fair, and as we stumbled off a ride and watched the fireworks overhead we embraced the love that had slowly grown over the years.

2003

LA County Fair

We moved in together within a month and were married a year later.

2005

Wedding Reception

Maggianos, Las Vegas

We have the kind of love people write stories about, I have no doubt we will last and know that come what may, Paul will always be the one I run to.

2008

2nd Wedding Anniversary

Deuce 40, Las Vegas

Procrastinator!

Ok I totally flaked on myself today! I was supposed to run and did not go! I will try to do it when Paul gets home. 5 miles today and tomorrow, then the Mud Run Saturday are it for this week. I am totally nervous about the Mud Run! I am going to have my little cousin take a bunch of pictures to post of me just covered in slop!

Today was Mica's first day of playschool, her friend Olivia from the Fabulous Moms is in her class! She was not having it at circle time and kept trying to escape until they started singing a song with hand movements. I noticed out of all the children she was the first to pick up the hand movements and I have no doubt it is because she is learning sign language. The concept of communicating by gesture is innate to her at this point. I really feel there are massive educational benefits derived from children learning sign language as babies. They are better able to express their needs at a younger age and have less frustration. Today was the only parent participation day of the class, starting Monday Mica is on her own!

Achieve

I woke up this morning expecting to be in a fair amount of pain from my run, but was surprised to find I just feel a little tight! With stretching and yoga I am feeling pretty good. I am excited to run 10 miles again and feel renewed in my running efforts. I just found out about a Mud Run this Saturday near me and am going to run a 5 or 10k sloshing through tons of mud! I am waiting to find out what my friend Jen wants to run, no way am I doing this thing alone! I have met a lot of great people since I have started running and it has definitely opened doors to some positive relationships. I am becoming more firm in my belief that if you work hard and focus on your goals, the Universe will help you to achieve and things will fall into place. Life will never be perfect, but there are clues along the path to guide you in the right direction. You just have to be willing to listen, or in my case look!

Only 6 more weeks until the Long Beach Marathon! I have raised $2,926 and only need $75 more to reach my goal! Every little bit helps. All of the $25 donations I have recieved have added up to a good amount. Every little bit helps, and together we each make a difference! Visit my fundraising page here!

10 miles!!

I was up at 6 am this morning, ok 6:30 I climbed back into bed for a few minutes, but I was out the door at 7 am! I made it 10.5 miles all the way through Rancho, Upland, Claremont, Pomona and finally into La Verne past Fairplex! It felt so good to be outside, the weather was perfect, and as Paul pulled up to meet me at 9:00 I almost wanted to keep running! Almost, but not quite! I am sure I will be sore tomorrow but right now I just feel like I could run forever... like I could run until we cure NF2... like I could run until all the ghosts of my pasts are left far behind... like I could run until all that lies before me is a bright and healthy future...