Trick or Treat!

I'm a busy bee today, Halloween is always fun and chaotic! This is JT's first elementary year in Halloween! I know you are thinking, so? But this is what Moms do, we count things down and notice every little first our babies go through. So I am taking cupcakes and Mica and we are heading over for JT's class Halloween party!

Sometime around last night I realized I was eating. This may not seem important, but this is the first time in a week and a half I haven't had to eat premedatively. I was at my Fabulous Mom's Halloween Party and was just grubbing on all the yummy treats, it was a bit uncomfortable having sprinkles stuck in the "hole" (you know, the one the tooth used to be in!) but I was still able to eat more than I have in the last 3 days combined! Yes I am proud of that! I am excited to finally be healing and will be up and RUNNING next week! YAY!

I need a referal to a dentist with small hands...

Ok so my oral surgeon took his gigantour hands and pried around in my mouth, no doubt ripping my gums even more... and then told me to come back again in another week, and still NO running! Then when I started asking questions he did that condescending doctor thing where they assume you are dumb and just give you simple answers, like "everything is ok." How is that an answer to "Why do my front teeth hurt?" Maybe because he didn't want to admit his freakishly large hands are the guilty culprit. I mean why, in the name of God, would a pre-med student with obnoxiously large hands decide to do surgery in a tiny area like the mouth?

That being said, I am super excited for the Fabulous Halloween Party today! My Mom's group is getting together for a costume party, complete with games, crafts, prizes and of course a pinata! Guess who got the pinata?

I finally have my post-op today! I plan on getting approval to start running again! I am not sure if it will hurt but I don't really care, I'll run anyway. My training plan this time is to get a good solid hill run in once a week on top of my regular long runs and quick runs. There is a great hill right by me, heading up Vineyard next to Redhill, then the little streets turning up from there all are short steep little hills. I'll run them until I can make it up without stopping.

Next week I am getting a video phone! I met Bill at my ASL group, he said his wife reads my blog (hi!) and told me about how VPs can help deaf people communicate better and emote more than relay conversations. Now I just need someone to call, who else has a videophone?

Running away...

This weekend was the longest weekend ever. A bunch of difficult things happened in my family, private, scary, and shocking all at the same time. Everyone is home and safe for now. I hate how anxious I feel when anything threatens our little family unit. I couldn't eat or sleep, or even relax to watch TV and zone out. I have to learn to just focus on the positive. Like how Mica has made up a sign for "Go, Diego, Go" and was really pissed off I didn't understand her made up sign! How JT pops up in the morning and runs off to school, his own little life already taken on it's own independence. I think it would help if I could just take off for a solid 10 mile run, but my gums are still not healed up and I have to wait another week! Once that week is up I will enjoy buckling down and getting ready for the Las Vegas half-marathon December 7th! See, I am cheered up just thinking about it. So when the anxiety puts my stomach in knots I will just pretend I am on a run, with nothing but cool air and open road around me, free from all constraints.

Day 4

I am somehow getting worse and not better! It's probably my lame attempt to wean off the vicodin, but I can't stay on that stuff and take care of the kids. Plus Mica had to wear a size 1 diaper I dug up in the back of the closet yesterday, so I am pretty sure I have to finally leave the house and do some shopping.




So Wednesday Clara took Mica to school and comes back with this art project the kids did. I said what is it? It's a tooth? She laughed and said no, its a ghost! To which Mica says, Boo! Paul comes home and I ask him, what does this look like to you? He answers sperm. Sperm. So obviously this playschool project is some crazy psychological evaluation tool, everyone who looks into it sees into their sub-conscious. I threw it away, I can't possibly keep every scribble the child does, don't judge me! She actually goes into the trash and brings it to me and tells me NO NO! Which is ridiculous and a little bit genious of her. She has never cared before about her random projects, but apparently she recognizes the power she holds everytime she shows it to someone and reveals their innermost secrets.

What do you see?

I'm alive...

... and I look like a chipmunk! Sorry no pictures this time. I'm not taking enough vicodin for that! The extraction went fine of course, no big, I woke up and Miena got me home. Wendy took care of me for a couple days. I am really blessed to have such good friends who can help me out! I am still sore and groggy from meds. It's kind of nice to just stay home and relax for a few days. I mean, did you know Tyra Banks has her own show? And Maury Povich is STILL doing paternity tests? Daytime TV is sick, seriously how do people watch it all day? Well today is my first day without nurse Wendy so I need to get back to reality. Paul told me not to worry about cleaning... he said it can wait til I can do it next week. I'm like gee thanks! He's actually been really helpful so I can't complain. I just can't wait to get the ok to start running again! Only 7 weeks until the Las Vegas half-marathon!

At least its not spine surgery...

I'm heading in to have my wisdom teeth removed and am actually really nervous! I'm being put to sleep and having all 4 out. You would think with all the surgery I've had this would be easy for me, but I'm a big baby. Seriously! I hate being put to sleep! I always have nightmares. The very first time I was put to sleep at age 9 for a spine tumor removal I remember them putting the mask on me and telling me to count backwards from 100. As I counted back my vision became tunnel like and slowly the darkness faded in, I felt like my consciousness was falling backwards into my body and I could see the light getting smaller and further away. It was a cavernous, domed, pitch black existence I fell through and as I slammed down into a black glass pool of water at the bottom I suddenly woke up. When I woke up I was in the worst pain of my entire short life, I had been opened and violated, and was too young to compartmentalize the pain. I remember being transferred from the gurney to my bed in the pediatric ICU, they lifted me with a sheet and I felt searing hot pain rip down my entire back. I'm pretty sure my wisdom teeth removal wont be so dramatic!

Halloween Party Pics!

I went as a witch! I made the skirt!
Paul went as DEATH, love the guyliner!

That's my BFF Adria! She went as Glinda the good witch/Princess/HomecomingQueen LOL
They had food, always a good thing!
I've known a lot of these girls for a LONG time!

Eating My Way to Recovery

I think I have gained 5 lbs since the race! I have been enjoying being a complete slacker. I completely gorged myself at In n Out the other night, and have had a glass of wine with Tivo nightly. I ran just one 2.5 mile hill run on Wednesday, it felt great actually! I have a 15 miler mapped out for later today, and that will be it for a while since I am having my wisdom teeth extracted Tuesday. Once I recover from that it's back to the routine to get ready for Vegas December 7th! For now I am going to just go finish off a loaf of homemade pumpkin bread!

MRI Results!

After a well deserved day off I am back! With good news, no less.

I finally recieved my MRI results! Let me catch you all up...
Propolis information

I receieved an email from my neurologist's nurse which said my MRIs showed I am stable!! WHOOOOOO! That means no growth! I have had no new neurological symptoms, and I am free to run and live for another 6 months at least! No needles, no surgery, no steroids, nothing!

Now it would be unfair to assume it is completely due to the Bio 30, because before Propolis I was younger and having babies. Pregnancy and breastfeeding trigger hormones that "could" trigger tumor growth. Over the last year I have obviously not had a baby or any pubescent hormonal surges. I still personally feel the Bio 30 is helping and will continue to take it!

Thanks everyone for the prayers and positive thoughts!

I Ran Long Beach!

I'm home already! It was a long 2 days!

The Hyatt was so gorgeous and we had a beautiful view!

It felt great to escape for a couple of days with Paul and meet the Children's Tumor Foundation NF Endurance Team! All of the people I met were absolutely wonderful, and it was inspiring to see so many come together for a common cause. I was the only person with NF2 there, but CTF did an awesome job organizing everything, and everyone was so determined and had only good intentions.

I met this girl Jenny who has NF2 but was told she has NF1 and NF2, which isn't really possible! She is the sweetest thing and I will definitely be keeping in touch with her!

The course was beautiful and I passed the time thinking about the long NF2 journey so many of my family and friends have suffered through. I realized that without NF2 my life would be completely different, and I love my life, so what is is what is meant to be. I prayed and envisioned my Mom hugging me at the finish. I know she would be so proud. No, I don't believe she was watching. I can't stand to think she may still be attached to this life, she is somewhere so very far away from all of the pain of this world. But today a small piece of her ran 13 miles!

I have video of my "big" finish and will get it posted as soon as I can, blogspot wont let it load right now!



Paul was incredibly supportive, as always, and helped out with anything he could. He really motivates me to be a better person and while I was running I found myself praying. I was just giving thanks to God for all of my blessings, and I know Paul is a wonderful blessing in my life. He's pretty lucky to have me too of course! He is out helping a friend right now but has promised me a leg rub, glass of wine, and Desperate Housewives tonight! How lucky can a girl be?

My Daz came!!! He is really into sports so I loved knowing I made him proud by finally being athletic at something! I didn't even trip! He seemed really interested in the race and said 19,000 people raced, including an 80 year old man!

To top it all off Paul bought me a beautiful cloche with a bow at the hat store! What did you all really think I had left my girlie side behind?

Thank you so much to everyone who donated and supported me! This is the beginning, not the end!! I plan to run the half marathons in:

Las Vegas, December 7, 2009
Surf City Huntington Beach, February 1, 2009
Rock'N'Roll Marathon San Diego, May 31st, 2009
San Francisco Marathon, July 26th, 2009


I will only actively fundraise once a year, but donations for NF2 research are always gratefully welcomed. You can visit CTF for more information!

2:37 baby yeah!

I did it! It was fun and hard and sweaty but I ran 13.1 miles and didn't stop the whole way! More details and pics to come!

I have...

Strep throat. Seriously bad juju. I'm running anyway, I can rest after. I've worked way too hard to give up now. I'm in tears, my throat is swollen stiff, hopefully a solid 10 hours and tons of warm liquid will help so pray or meditate for me please!

On the bright side paul found me an adorable purple cloche with a bow on the back!

*cough* *cough*

I'm freaking sick!! Yesterday my throat was a bit raw, and when I whined to Wendy she said my voice totally cracked. Usually I dig the whole deep throaty voice thing, but not this weekend! Not when I've raised over $3000 and am running 13 miles at 7 am! I have worked so hard and had a fear I would either hurt myself running or get sick. My friend Cherish who is running too hurt her ankle! OMG I just right now found out my other running friend Jennifer's son swallowed a quarter! What's with the bad race juju?? My awesome mother in law made me green tea with honey and lemon. Side note: I hate tea, I hate honey, and I hate lemon! I know I'm weird but whatever. I choked down 2 cups and it helped a bit, but as of now its becoming a full blown sinus infection. No way am I quitting, I will load up on sinus meds and nasty green tea and suck it up. So if you come down to the race watch for me stumbling in at the finish with a swollen puffy throat and a huge smile on my face!

Who is Ryan Reynolds?

I just read on Perez Hilton that Ryan Reynolds is running the NY marathon in November to raise money for Parkinson's Disease. At first I thought who the hell is Ryan Reynolds and how did he get on Perez Hilton? But then I vaguely remembered he had a movie and married Rebecca Romeign Stamos. Either way there was a link to read his letter about why he is running and I thought it was hilarious so thought I would share.

I have a busy day ahead of me, getting ready to leave for Victorville to spend the night with my Mother-in-Law before we head to Long Beach!!! Yeah! I am so excited! I will be blogging updates from my sidekick, so check back in over the weekend and come Monday I will be adding Long Beach Half Marathon to my tiny "list" of completed marathons!

NF Endurance Team Newsletter!

I was recently interviewed for the newsletter, check it out!

Recently on my Mom's group we were sharing our pictures of ourselves as children, here is me at age 3! I know, Mica looks just like me!

My Glass is Completely Full!

I was reading through my own blog earlier and noticed that it can be a very depressing blog! That was not my intention at all when I started this. I am a fighter, I am a runner, I am strong... I am not a whiner! In person I am incredibly positive, I think that my blog has given a home to all of the fears I would rather not lay on people. In normal daily conversation I don't sit and talk about how much something hurts, or how angry I am at anything. So my blog has become a place where I just dump all of my issues. I am going to make a conscious effort to have a more positive impact through my blog. I am still going to express myself here, after all it is my blog, but I will try to balance it with more positive news. Because seriously, I am blessed! I have a husband who adores me, a nice home, gorgeous sweet little babies, a lot of good family and friends... that is more than 95% of the world can claim. I actually read a forward once that said if you have a personal computer, your own car, a stable home, and food on the table, you are literally one of the top 5% wealthiest people in the world! That is something to think about. I may have this disease, but I also have health insurance, and access to intelligent doctors and modern technology. So the glass is definitely more than half full, it's overflowing!

I still do not have MRI results!!!

Every 6 months I have my brain, thoracic, cervical and lumbar spine all scanned with and without contrast. The scans are then supposed to be sent to my neurologist, and the radiology reports are supposed to compare the current tumor measurements to past reports to find if I have had any growth. About a week after the exams I pick up my own copy of all 4 radiology reports for my own files. This all sounds SO simple doesn't it? Then why... why for the love of GOD, is it so hard for professional MRI facilities to follow this protocol?

I used to have my MRIs done at Millenium Imaging here in Rancho Cucamonga. They would burn me a CD with all my scans to take with me to my neurologist appointment. In August of 2007 they sent me all the way to Newport Beach to take up my doctor's time with a blank CD! I was so irritated! Then I go back, and they give me a CD with only the brain scan! It took them 2 weeks to finally just send a correct CD with all scans to the doctor. The next time I needed MRIs in February of 2008 I went back, but I spoke to the office manager and specifically reminded them what needed to be done. AGAIN they sent an incomplete CD to the doctor. This was after I asked them to open the files and double check the CD before I left their office. They assured me all of the scans were on the CD, but they weren't!

So this time I went to Grove Diagnostics in Upland to have my MRIs. I told the MRI tech about all of the problems at Millenium Imaging, and she couldn't believe them either. Over 2 days I had all my exams done. Before I left I asked the tech to please make sure my old scans were sent over from Millenium Imaging so the radiologist could do a comparison in his report. This is completely standard protocol. A week later I speak to my neurologist's nurse, her office only received my thoracic and lumbar scans! Seriously!? Again!? I just couldn't believe it. I called Grove and they said they would send all of the scans immediately. I spoke to the nurse and she said she recieved more scans, but still didn't have the brain with contrast! So I go down to Grove myself and they are making this all kinds of difficult, supposedly they will contact the Doctor and send everything that needs to be sent. Why did I have to force them to do that to begin with? On top of it, I got my radiology reports, and the radiologist did not do a comparison! Millenium Imaging only sent over my brain scan. I went to Millenium Imaging and signed a release and hopefully now it will all get sorted out.

Why does it have to be so convoluted and difficult? As hard as it is to find a job, how do these people find jobs? You know you see them walking around with their jaw hanging open, eyes a bit glazed, and you just think who freaking hired these inept people? When handling people's medical information you would think they would be a bit more careful. I mean don't worry, no big deal if I don't know how many brain tumors I have growing right?

A lot of people have been asking me for an update and I will post here as soon as all of my scans are sent to my neurologist and reviewed.

Too blessed....

... to be stressed!

Lacking the Ability to Over-Hear

I'm always on the outside looking in. Even at home I see the banal remarks thrown around between Paul and the kids that I am always excluded from. If I ask what was said people tell me it was unimportant. One of the biggest challenges to losing my hearing is lacking the ability to overhear. In direct conversation I can usually figure out what is being said, its all the time that spans in between that leave me feeling disconnected from the world. Maybe that's why I have taken to running, and have found peace in my long meditative Sunday runs. There is nothing to hear or overhear when you run. In the start of a run my mind is bouncing around with random thoughts, by deeper into the run my thoughts have settled into a creative rythm, and I finish the run with a sense of renewal.

I could have opted to have tried for an ABI when I had one of my VS treated before, before I lost the rest of my hearing. I just don't really know any people who have succeeded with an ABI at a level that warrants going through the invasive procedure. I would rather wait, and trust that one day the ABI will be improved and I will be able to hear in some form again. In the meantime I have to learn to accept long boring dinners where everyone's mouths move silently as their eyes avert from me, in rightful shame for completely excluding me. I have to learn to accept the voices my subconscious has created for my kids, and just hope that one day I hear them laugh for myself. Always hope...

Weekends!

I love the weekend! We work so hard all week, just so that on the weekend we can relax and enjoy ourselves. The kids run wild on their barefeet, random blankets are strewn around the house, netflix movies pile up on the table to be returned. I find time to go for a long run, and as I leave the house a sense of complete calm and freedom take me, and the wind carries me my entire route. I return and gulp down random vegetarian leftovers, some protein, maybe some veggie sticks. I love having no routine just for a day, and on the rare weekend such as this one when Paul has both days off the debauchery spans across 2 days like a deep stretch.

Today we'll watch Gone With the Wind... Paul has NEVER seen it! I know, we need to go watch it... right now!

The Perfect Run

I still have not gotten any word from my doctor or the MRI place about my results. It shouldn't take this long, its such a simple process, but it always does. I've been keeping myself busy running. I found a perfect run on Wednesday, 5 miles, lots of slight hills, culminating in one super steep hill I almost had to crawl up before reaching the top and gazing down at a beautiful view of North Rancho. I sped down the other side and felt like I was flying.

Today my friend Crystal is coming over and should have all the pictures from my bday! I will post them as soon as I have them!