Monday, December 6, 2010


This past week I have been at NIH in Bethesda, Maryland for my 3rd trip to participate in a clinical study of NF2. Each visit I fly out with Paul and have high-tech MRIs and see specialists for the smorgasbord of issues NF2 has gifted me with. I've swallowed barium mixed with pudding in front of a moving xray, had fluorescent dye injected into me as multi-colored lights were flashed into my dilated eyes, been timed as I used one hand to pick up quarters and place them in a cup, and been poked with many an IV by incompetent nurses who don't seem to know how to get the vein on the first try. After all of the tests on the last day I sit down to go over the results with the doctor in charge of the study. Dr. Asthagiri is friendly and empathetic, he makes looking at tumors in your brain feel like opening the mail, just another task in a busy day. I have been blessed in my NF2 journey. I may be Deaf, but I have so many NF2 friends my age who cannot walk, see, talk, eat, or even think clearly for all of the surgeries, tumors and medications they have been assaulted with over the years. The fact that I can run and do not suffer from facial paralysis labels me as "lucky" in the NF2 community, and I am grateful every day for that. However, on my biannual MRI results day I am not comparing myself to others, I am instead forced to look directly inside myself and see the army of tumors attempting to choke out my entire brain and spine.

Each visit I have only minimal growth, but that growth is measurable over time and as it stands now I have a 3cm tumor that looks ridiculously scary and intrusive embedded right in the top center of my brain. It has a tail winding back like a whisper the length of my entire head. The space between the 2 hemispheres of my brain looks disgusting, lumps of tumors clot together in trails, others stand alone in random places. MoFo has stopped growing and is stable, but has not shrunk, and is now surrounded by baby tumors all lunging toward my brain stem. After swallowing the image down I asked the Doctor to show me my spine MRIs. We went through each section, and it seems my spinal cord is barely dodging contact in too many places to count. After thoroughly reviewing the doctor told me that as of now I am stable.

STABLE!? (and here comes the rant, if you are having a nice day look elsewhere before I ruin it.) How the hell is having so many tumors I cannot count them stable? Is stable synonymous to "There is not a damn thing I can do, keep running until you lose every single bodily function one at a time, your dignity, as well as your ability to communicate and partake in life with everyone else, then die." or does it mean "Yup, you still have NF2 and there is still not a cure, and no matter how healthy you eat or how much you run this is something you cannot control so just go eat some chicken Mcnuggets and wash it down with some JB because you'll be dead before it matters anyway." OR does it mean "We see people way worse than you every day and so we are unable to validate your fears and concerns and instead want you to go home and pretend you will get to ever be normal, while everyone around you looks the other way and pretends the same thing while slowly distancing themselves from you so they don't have to cry when you inevitably die."

Now here comes the part where I end on a high note, but today I have nothing to give. I am just empty. I think it is particularly cruel to have watched my Grandma, Uncle, and Mom all go through this before it is happening to me. I know all too well what is about to happen over the next decade, and wish I didn't. I wish I could lie to everyone but I can't even lie to myself right now. I already feel apologetic for my rant, reminding myself that I am not the only one with problems, and I am blessed in my life. I have excellent medical care, am surrounded by a family who loves me, have a solid marriage with my best friend, children who make me proud, and friends who honestly care about me. Would I rather live to be a hundred but live those years lonely or in squalor? Isn't life about the quality and not the quantity? On most days I truly believe in my heart that the amount of time God decides to grant me is more than enough, but sometimes I am just not that magnanimous, some days I kiss my kids extra hard and think "I don't want to go." Why does everyone else get to live while I have to die? My parents, Paul, the kids, will all continue on, and I'll just be a picture on the wall. They'll only hang the ones of me now, bright and smiling. The ones of me in the end will be hidden, and eventually forgotten. Admittedly, we are all resigned to the same fate, it just seems my luck will run out sooner than most. I cling desperately to the hope for a cure, and strive to make a difference in each day I still exist.

What else can I do? What else should any of us do?

Thursday, November 18, 2010


There are two issues I really need to deal with on this blog right now: Nutrition and Fitness. The two have been working against each other for me lately. I run, I'm hungry and I eat. Or, I starve, I'm tired, I skip workouts. Neither is a healthy way to exist, and I have been floating back and forth between the them every few weeks. I need to find a way to nourish myself and stay active at the same time, and balance those needs within the context of the rest of my life without them taking over. I drive everyone around me insane, constantly overwhelming myself with miles, weights, calories or carbs. I remember telling my Dad (an admitted work-a-holic) that he should "work to live, not live to work." Seems I need to start taking my own advice.

Nutrition: I love to eat. I mean I know most living creatures do, but allow me this moment of self-absorbency and assume I really do love to eat more than the average person. Carbs are my secret lover, I eat them at every meal, and lately a lot of them. Unfortunately I am apple shaped by nature. I have girlfriends who are naturally pear shaped and hate it, but I always point out you never hear a man complain his wife's butt is too big! I am ridiculously skinny everywhere, but my stomach. Everything I eat goes right there. Every time I eat I am either under-eating and starving myself, or overeating and gorging. I know something has to change, and I think after years of struggling with my food issues I have improved to a point where I can listen to my body and respond to it's needs. As a vegetarian, I wont eat meat and that is not going to change. I also wont drink milk or eat cheese (awww, cheeeeeeese.) I have decided that for my own personal sanity, and waistline, I am going to eat eggs. Not even free-range ones (free-range is just an overpriced label the egg industry created to allow consumers to pretend they aren't supporting factory farming.) Egg whites, those mysterious little cartons above the eggs, are my friend. Low in calories and carbs, high in protein, and oh so tasty. Anyone who is vegan would shake their head in shame. Egg laying chickens are the worst treated animals in the factory farm business. I can't even go into it, and if you don't know about it yet don't ask. TRUST ME. Anyway, I can replace at least 1 carb a day with egg whites, and another with greens, and I feel my nutrition needs will be met with minimal animal consumption and maximum satisfaction. No calorie counting necessary!

Fitness: Today I hit the gym, and when I left I could feel the burn in every major part of my body. Every step I take feels strong, and my abs contract every time I bend to put a dish in the dishwasher. I love that feeling, so why is it so difficult for me to maintain a fitness routine for longer than 2 weeks without taking days off? There is not much to consider when it comes to this, I need to just stop quitting. Every Monday, Wednesday & Friday morning I need to be running then at the gym. If I absolutely have to miss a day because life gets in the way, then I work out the following day and pick back up where I left off. I love Nike, not only because of the Nike+ sports band, but because of their long-time motto: Just Do It. So cheesy (mmm, cheeeese) but so true!

By posting these decisions in my blog I have committed myself to them, and although I know nobody really cares, I still feel the need to meet the goals I set and am therefore more motivated to do so. My body fat percentage was 27% just 6 months ago, and through determination and sweat it is down to 17%! I have just 7 more percentage points to go, and nothing is going to stop me.

Wednesday, November 10, 2010

Elapsed Time

Every time I update my blog I feel the need to explain the gaps of time spanning between posts. I look at my most recent blogs and think how long ago they were written, in just 2 weeks they are already old. The days I have failed to blog seem lost, and I feel overwhelmed by the amount of seconds that have ticked by without review. The other day I was looking for a baby picture of Mica, but my computer crashed last year and I lost a lot of data. When I realized I actually don't have very many baby pictures of her my heart ached as though along with the files the memories had somehow been erased. My Gramps has several large boxes filled with undeveloped film, random photos, and projector slides. They hold images of acquaintances who's names we have forgotten, houses we don't recognize, and family who has long since passed away. Some are scattered across a table, others are tucked into albums no one ever looks through. Why does every moment need to be chronicled to maintain its existence? These moments have passed but still there is some unspoken rule about throwing away random memories.

Less than 2 months ago I turned 28, and gaped at all the time that has slipped through my fingers, void of any true accomplishment. Shouldn't I have stuffed every moment with meaning, achieved every career I wanted as a child, and saved enough money for a McMansion by now? I don't know where that time went, and when I look back at my blogs and photos the gaps represent chunks of lost time. People say they should have journaled, they should have filled out that baby book, they should have taken a photo of their child every day from the day they were born so as not to lose even one second of a life that is passing us by much too quickly.

When I lost Mica's baby photos, did those moments become irrelevant? If they exist solely in my heart then how are they any different then an idea that comes to mind? Her first year is now intangible and without proof, and I could easily join the ranks of people saying I should have written everything down or taken a photo of each day. Only while snapping away with the professional grade camera, a lot of parents are missing the moments that really count. My wedding doesn't have a lot of photos, but I clearly remember every time our guests blew bubbles and Paul would lean down to kiss me, fulfilled promises in his eyes. I haven't saved all of JT's school pictures, but I remember how tightly we hugged that first morning of preschool, and how he flew into my arms when I came back for him. I have a scant handful of baby photos of Mica, but when I close my eyes I remember her sweet scent and the firm feel of her curled into a ball on my chest, her toes barely grazing my belly button.

When I go I will take all of those moments with me, and any photos left behind will accumulate in a box no one ever looks at. Our memories will be stuffed into an album packed away in someone's garage, and maybe one day they will take the album down and not even recognize us, but feel too guilty to throw pictures in the trash and instead pack the album back away in a corner to be forgotten. Eventually the ink will fade and the moment will be lost forever. I am sure that day will come all too soon. No amount of photos, blogging, posting or journaling are going to slow down the sands of time. What has happened is gone, and being afraid of the future is no excuse for living in the past.

Tuesday, October 19, 2010

NF Endurance Team at Long Beach 2010!

This weekend the NF Endurance Team hit the Long Beach Marathon and painted that course yellow! Paul and I got into town Friday and met up with my fellow Team Captain John Sullivan as well as CTF staff member Joe Gunn just in time to get our booth set up at the expo. My parents kept the kids most of the weekend, and the rest of us focused on staffing our expo booth and representing the NFET.

Saturday night we finally packed it in and headed to the team pasta dinner. We had a great turnout and everyone had a chance to share their NF stories. When it was my turn I was a bit verklempt. I usually talk about having lost 3 family members to NF2, all of the tumors and surgeries I have survived, my concern for the future of my son JT who has NF2, and wanting to stay alive to see both of my children grow up. This year as I stood up in front of the team I could see JT and Mica watching me expectantly. I wasn't sure what I should or shouldn't say in front of them. My mouth moved and a few things tumbled out, but I couldn't say what I was really thinking. That I have convinced myself that if I keep running I will somehow outrun NF2, but when it comes to my children it is harder to stay so positive. I cannot imagine JT actually having surgery, or Mica having another Mom in the 2nd half of her life as I have Tish. I couldn't say that I run because I don't know what else to do, and that deep inside I feel it will never be enough. That every time I set another goal I am really just building another distraction. That I am scared. That when I run with the NFET, just for a little while, I am not so afraid. I have hope.

We met so early the next morning it was still dark and crisp, but surprisingly comfortable outside. We had all bundled up, but once we met by the lagoon we shed our outer layers and the bright yellow singlets appeared. Cameras flashed, people stretched, I could barely keep up with all of my incoming texts trying to get everyone to the correct spot. The sun started to come up and our marathoners had to head to the start to begin their journeys. One of our marathoners is my friend Christy, her boyfriend Gabe has NF2 as well as several people in his family. Recently his sister was diagnosed with cancer in one of her NF2 tumors. It was a shock to everyone, and Christy shaved her head in support as Gabe's sister lost her hair. Christy was not a runner before hearing about the NFET, and most first time team members choose to walk a 5K (an accomplishment in itself!) Christy committed to running the full marathon for Gabe and his family, and we all hugged her tight before she jogged off to the starting line. A marathon is an individual effort, for all of the team camaraderie and support our marathoners had, when the horn went off they were on their own. Soon the half marathoners left as well, including our TC John who has NF1 and walks the entire way on his cane, shoulders back and head held high.

Soon only the 5k participants and support team were left on the field. We said our good byes and headed to the 5K starting line. Team Haley members Robert and Susi Cruz snapped pictures and warmed up. Valerie and Shaleyah are two of my closest girlfriends who came down to do the 5K just to support me! I had met my friend Diana through a local Mom's club, and she had left her babies at home to come run in yellow with us! When it came down to it, like everything else in my life, it was Paul and I left standing together. Nobody else sees me through things the way he does, or knows me better than I know myself. As the crowd started moving forward we shuffled next to each other, side by side in silent support. Right before the start line, which sets off a timing chip attached to each runner's shoe, my brand new Nike Sports Band decided to malfunction! I broke away and tried to fix it, but Paul was carried off in a sea of runners and I could only see spots of bright yellow floating away in the crowd. I shook out my legs, noted that my watch read 8:32, and stepped over the start line.

The route was dense with walkers blocking the path and runners darting side to side trying to break away from the pack. I breathed in through my nose and out through my mouth, my heart rate already high from the excitement and adrenaline. Soon I came up on Paul's right side, I slapped him on the back and kept on running! I glanced back a moment later and saw him melt behind me into the crowd. This was it! After months of training I was on the course, and needed to run a 5K in under 25mn! Self doubt nagged at the edges of my mind, I kept imagining if I did not reach my goal, having to go back and get sympathetic pats on the back, and remarks about it being about the effort. My entire life I have been mediocre at everything, I am not uniquely talented in any way. I may not win the race, but I was going to reach my goal! I wove in and out of the walkers' paths, eyes focused straight ahead looking for any room to squeeze a few steps further. The path wound around but I did not take in any of the sights, all that existed was the pounding of my feet on the pavement pushing off beneath me, and my heavy breathing rasping in and out. I saw the 1 mile marker sign and noted it had already been 10 minutes. I was crushed. I was 2 minutes behind in just the first mile! There was no way to make up that much time in 2.1 more miles without killing myself. Then I remembered this was not a training run! I only had 15 minutes left, and I was going to give those 15 minutes everything I had. There was no room for doubt or negativity, it was time to push beyond my limitations and fly! My balance wobbled a bit and I ignored the fear of falling as I threw myself forward and let my heels hit my backside. The course had doubled over and I could see the elite runners passing back the other way, already almost done. Before I knew it I could see the 2nd mile marker! I immediately knew the first mile marker had been measured incorrectly, and by my watch I was exactly on pace, running under 8 minutes a mile. I could not believe my short, skinny legged, full of tumors, hunch backed self was clipping 8 minute miles! My stomach heaved, I thanked God I hadn't had the audacity to eat anything before this race and swallowed down the bile. My lungs burned, each breath searing through my chest as I tried to suck in air. The crowd had thinned out, the masses were behind me and those around me looked like me, regular people who could run! We weren't elite, we would never get an endorsement or VIP status from race officials, but we were just as proud, worked just as hard, and this was our moment! I turned a corner and saw yellow! Beautiful, bright, neon yellow, shining like bursts of the sun along the course! 2 tiny little bursts could only be my babies! There were my parents cheering like crazy people and taking pictures! I threw them a smile as I ran by, not even slowing for a high five, the finish line was in my sights. I thought I was running my fastest, but dredged up my last reserves and ran full speed over the finish line! I glanced down and my watch read 8:57! Exactly 25 minutes! Had it been under or over 25? I couldn't calculate, the edges of my mind were foggy and I realized I was hyperventilating just a bit. I took my medal and turned around to wait for Paul. 3 minutes later my breathing had already returned to normal and Paul came bounding over the finish line into my arms! With our medals hanging proudly around our necks we headed out to cheer on the rest of our team. As soon as I could get away on my own to the official race booth I looked my time up online... 24:36! I startled an entire crowd of people when I gave a little yelp and jump, and ran back to find my family with a huge smile on my face. I did it!!

I got back on the 5K course and found Valerie had already finished. I cheered on the rest of the 5K team and headed back to collapse at our finish tent. I saw my other 2 girlfriends Adria and Eileen had found our tent and were waiting with hugs and goodies! I rested for just a minute before heading back for the marathon course. I may have crossed the finish line, but we still had runners out there battling the half and full marathons. The course was blocked off and fenced around in a really confusing way, but Mica and I were able to see John cross the finish from behind the chain link fence. We yelled and cheered for him as loud as we could. He had finished all 13.1 miles, and it was obvious it hurt, but he just kept going and never gave up! I grabbed Paul and JT, we all 4 headed down to a good spot by the finish to wait for Christy with her family. That is when we finally found Master Kim's family! JT's taekwondo instructor and his friend Chris had signed up to run for the NFET this year, but we had been unable to find them all day. Now, just in time, we had found them! Chris had already finished and was recovering. Master Kim hurt his knee on the course and was gutting it out. Soon he came along, trying to run in obvious pain with a look of complete determination on his face, he crossed over the finish line and immediately took all the weight off his knee. Even with an injury, he never gave up, he had finished a full marathon!

Now the only one left was Christy, and we all waited expectantly for her. Gabe kept peering around the corner, worry edging his face every time a person in yellow turned out not to be her. Then, we saw her, with a smile on her face and still running strong, Christy came up the final distance and we all cheered wildly for her. She crossed the finish, and I knew that our team efforts were a success this year in Long Beach!

After a lot of hugs and packing up, we all said our good byes. My kids were passed out in the back before we could even hit the freeway, and even though I was exhausted, it was the best kind of exhaustion I've ever felt. Next up... VEGAS!!

Friday, October 8, 2010

The Demise of the Tooth Fairy

I knew this would happen eventually. I knew that no matter how hard I tried to stop him, one day JT would grow up. This morning he grew just a bit too much for my taste, I may have to look into shrinking him...

Two weeks ago I was rummaging in my jewelry box for a bracelet when I noticed JT had come up behind me and was picking through the pile of random things I had tossed onto the bed. I realized what he would find only a split second too late, and watched helplessly as he opened the tiny box that held all of his baby teeth. He stared into the box for a moment, and in that moment I am positive he knew the entire truth. Still, he hesitated, and asked me what was in the box. I tried to be dismissive and redirect his attention (pay no attention to the teeth behind the curtain!) but my Mommy tricks were of no use. He demanded to know why I had stolen his teeth from the Tooth Fairy? I told him the truth, obviously. After the Tooth Fairy takes a tooth, she gives it to the Mommy for safekeeping. JT cocked his head to the side as he absorbed this and then asked why the Tooth Fairy would pay for teeth she doesn't keep? I was backed into a corner by now. Literally, my jewelry box is in a corner. I asked him where he expected the Tooth Fairy to stash all the bajillions of teeth she collected each night, and confidently told him the Tooth Fairy had entrusted his teeth to me, and then I pretended not to understand any further questions. (Sorry, I can't hear you when you mumble!)

The day before yesterday JT lost one of his front teeth, and as always he placed it in a ziplock bag under his pillow before he drifted off to sleep. In the morning when he woke up the tooth was still there. I am ashamed to admit this Tooth Fairy dropped the ball. I completely and totally forgot about the tooth transaction. In the morning JT woke me up and shoved the plastic bag in my face with the tooth still inside, a bit petulantly actually, but I couldn't blame him. I grimaced internally before flashing a reassuring Mommy smile and explained that since he had gotten up to sleep with me in the middle of the night the Tooth Fairy hadn't been able to come. I told him he had to stay in his own bed all night. He snipped back that he had stayed in his own bed all the way until 4am as he stalked off to get ready for school.

Last night, I crept into JT's room at 2am and balanced precariously on an IKEA chair next to his loft bed. I slipped out the tooth and replaced it with a fresh $5 bill, then added the tooth to my little collection.

This morning JT walked straight up to me and announced that he didn't think the Tooth Fairy had really come. He said "You know what I think? I think you have been taking my teeth! Where are they? I want to see my teeth!" Like I had been holding them hostage? Finally, I let it go. I told him that I was indeed the Tooth Fairy. I expected him to be disappointed, but instead he looked pleased with himself, as though he had solved a great mystery.

Mica's teeth should start falling out soon, until then I plan on sleeping through the night and spending my spare cash on Starbucks rather than a creepy collection of baby teeth.

(Someone explain to me why I still have the teeth!?)

Monday, October 4, 2010

Just 2 Weeks Until Long Beach 2010!!

Just 2 more weeks until the Long Beach Marathon! As most of you know I am serving as Team Captain of the NF Endurance Team in Long Beach, and attempting to break a 25 minute 5K on race day! I am ridiculously excited and anxious, I cannot wait to paint that course neon yellow in support of NF research!
With only 2 weeks to go I am still a bit far from my goal of raising $5000 for CTF. Please check out to see how CTF is investing this money. Every dollar truly does count, and our collective dollars are what make a difference. It is amazing what we can accomplish by working together. I know if we work hard enough we will see a cure for NF within my lifetime.
I want to thank all of you who have continued to support my fundraising efforts, and if you have not yet donated this year I hope you can take a moment to visit my fundraising page at:

If you are free on Sunday October 17th, come down to Long Beach to cheer on the Mighty NF Endurance Team! Contact me for more details if interested.

Saturday, September 25, 2010

Vegans Eat This, Not That!

Yes, I totally ripped that off from a super popular book. It is a very simple diet changing premise, and comes in very handy when switching a typical recipe into a healthy & delicious Vegan meal!

Milk for baking and drinking = Silk Pure Almond Milk or Almond Breeze or SO Delicious Coconut Milk
Milk in cooking = Organic Soy Milk
Butter = Earth Balance
1 Egg in baking recipe = 1/2 banana, pureed
Slice of cheese or Cream Cheese= spread of Tofutti Cream Cheese
Ground Beef or Chorizo = Soyrizo, Trader Joe's is gluten free!
Burgers = Morningstar Farms Vegan Grillers
Sausage = Morningstar Farms Sausage Patties (have a small amount of egg, booooo)
Ribs = Morningstar Farms Veggie Riblets (these are so good, I had to include them!)
Ice Cream Desserts = Rice Dreams Mint Cookie Sandwich, Tofutti Cuties, sorbet, SO Delicious yogurt or ice cream (made from coconut milk!)

Finally, a day late and a dollar short, my meal plan yesterday:
Breakfast: Bowl of Trader Joe's quick cooking steel cut oats topped with ground flaxseed, cinnamon and sliced bananas.
Snack: Protein Shake & Trail Mix
Lunch: Almond Butter & Jelly on sprouted grain bread, side of broccoli
Snack: 1 leftover birthday cupcake with sliced green apples, then Wine Tasting with crackers (don't judge me!)
Dinner: Sweet Potato and Lentil Chili with homemade vegan cornbread
Dessert: Wine

Today I am behaving because tonight is my birthday party and I need to fit into a teeny tiny dress, so instead of allowing some eggs or cheese I have instead stuck to an extra day of my strictly Vegan diet, and I feel great!

Breakfast: 2 homemade vegan oatmeal cookies
Lunch: Simple Salad with organic vinaigrette, okay, and a tiny bag of BAKED Doritos!
Snack: Trail Mix and 1 vegan cookie
Dinner: at Hugos for my birthday!
Snack: chocolate covered apples at MBar while we watch a Burlesque Show!

Why am I still sitting here? I need to bust out the sequins and red lipstick!

Thursday, September 23, 2010

A Very Un-Fabulous Day

I know I promised to post my own "Eat This, Not That," and that you all have been waiting with baited breathe throughout the day for my little post, but today is just not the day. Today was one of THOSE days. So today you see the not-very-fabulous-running mommy's diet when I snap and need carbs. A lot of them. I am going to place the food in chronological order, along with its excuse.

Wake up to find the kids' lamp fell and shattered all over the carpet in their now pitch black room. The kids are still asleep from being up late for my birthday dinner the evening before, and all 3 of us need showers. It's also my volunteer day at Mica's class...

Breakfast: apple and 1 slice of cold leftover vegan pizza in the van while driving to Mica's school, an hour late.

Snack: Spent chasing 4 year olds and heaving them all across the monkey bars once they realized Mica's Mommy is a sucker.

Got home and received a text from my Dad that he lost a piece of JT's broken glasses (long, unimportant story.) JT is blind without glasses, need to get to Sears for a replacement, but no time to get there and back before JT gets out of school. In the meantime the dog bites Mica, and as I am punishing him Mica has an "accident."

Lunch: The rest of the cold vegan pizza, carrots, strawberries, a bag of trail mix, a half a pot of coffee, and the crusts off Mica's PB&J.

Get JT and get to Sears, no they don't have the frames, it would take a week to get them. Need to go to Lenscrafters.... forgot the prescription at home. Home... Lenscrafters... wait for my Dad who graciously covered the glasses since he lost the piece from the other glasses. 5pm, headed home to make dinner (planning Moroccan Couscous) and realize the kids' room is still pitch black. Swing by Kmart for a lamp... get stalked by weird little man who I finally turn and stare directly at, he then asks me if I speak Spanish and scampers away when I growl NO (in Spanish.) See a Lil Ceasars in the Kmart and grab a pizza for the kids, I'll finish off the Chana Masala.
Get to the car, JT spills the entire pizza on the passenger seat of my van. I snap and start yelling at him only to realize he burned himself, and I have to totally apologize and help him clean up. Saved most the pizza, get home, serve the kids and...

Dinner: Half a slice of pizza with (most) the cheese and ALL the pepperoni peeled off. The crust of 2 other slices. A large glass of white wine.

Dinner #2: Now if you'll excuse me I am about to finish off that Chana Masala with a Smart Bagel smeared with Tofutti cream cheese.

Dessert: Another glass of white wine with some dark chocolate while I watch Greys Anatomy and pass out!

Wednesday, September 22, 2010

The Rules

Naughty Foods: Carcass, duh. Milk, eggs, and cheese. Unnatural processed foods made mostly out of chemicals.
Anytime Foods: Greens (ex:kale, collards, parsley etc) Veggies, fruits, whole grains, beans, nuts & legumes.
Sometimes Foods: Vegetarian replacement foods, like veggie burgers and soyrizo. Foods with dairy byproducts like whey, casein, or egg as an ingredient.
Weekend Foods: The only weekend rule is no meat, enjoy, but remember everything in moderation!

Breakfast: Whole grain and protein
Snack: Protein Shake and fruit
Lunch: Whole Grain, protein, & veggie
Snack: Protein Shake and nuts
Dinner: Whole grain, protein & veggie
Dessert: glass of red wine and a vegan dessert treat!

Do your best and be proud of yourself for the steps you take. Nobody is perfect, and having a couple of slices of pizza doesn't erase all the nutritious food eaten throughout the week. Be realistic, sometimes you get invited to parties or restaurants where there are no perfect options. Make the best decision you can, then enjoy it!

Don't count calories, eat mindfully, chew thoroughly, stay active and eat only healthy foods.

Breakfast: 1/2 smart bagel topped with tofutti cream cheese and a Morningstar farm sausage patty. 4 strawberries.
Snack: Protein Shake & Banana
Lunch: Leftover Chana Masala and Naan (it was a big pot!)
Snack: Protein Shake and Trail Mix
Dinner: Birthday Dinner at my parents' house! Having zPizza's Berkeley pizza, a vegan creation I have been wanting to try
Dessert: Cupcakes! JT won cupcakes at a raffle and insisted on giving them to me for my birthday. They definitely contain dairy, but my Pookie gave them to me and I plan on eating one!

Tomorrow will be my own personal version of "Eat this, Not that!"

Tuesday, September 21, 2010

What do Vegans eat?

It has been almost 3 years since I read Skinny Bitch, and then announced to my family I was no longer going to eat meat. They all smiled at me patronizingly, assuming this would no doubt be another fad I was into for a few weeks before moving on to the next shiny idea. Unfortunately for them, specifically my husband, that was only the beginning. As I absorbed more information on the cruel treatment of factory farm animals, the antibiotics, steroids and hormones we absorb from the meat, and the history of vegetarianism in general, I only strengthened my resolve. After devouring Slaughterhouse by Gail Eisnitz, there was no turning back.

Recently I started allowing eggs and fish into my diet in moderation, and I have always clung to my cheese addiction without an ounce of guilt. Then I read Alicia Silverstone's The Kind Diet and realized what I have been missing out on. Why bother to limit my diet if I am not going to reap the benefits? By continuing to eat animal products I was still poisoning myself and slowing down my digestive track. If I want to truly live clean, I can't do it with a daily dose of dairy. By the time I turned the last page, I knew it was time to recommit myself.

Thanks to Facebook most of my friends and family are already aware of my newfound commitment, and most of them ask the same questions. They ask what I eat, and they ask how I do it. This week I am going to share everything I eat to give a realistic picture of a vegan diet. I will share my Rules tomorrow, they are also a great weight maintenance plan when paired with running (of course!)

Breakfast: 1 slice homemade vegan banana bread, 1/2 green apple dipped in natural peanut butter
After Work Out Snack: Trail mix and Protein Shake
Lunch: leftover quinoa with cherry tomatoes and fresh basil
Snack: Protein Shake
Dinner: Eggplant Chana Masala, brown rice, brussel sprouts, Naan

Breakfast: Trader Joe's quick cooking Steel Cut Oats topped with ground flax seed, sliced bananas & cinnamon
Snack: Trail Mix
Lunch: leftover Chana Masala and Naan
Dinner: Dine out at Chilis, Spicy Black Bean Burger topped with lettuce, pickle, tomato, grilled onion & ketchup with steamed veggies on the side! (who says Vegans don't eat!??)

Thursday, August 19, 2010

Just Keep on Swimming!

Last weekend we took a family trip to the lake, and I watched as JT determinedly swam a long distance to reach me at a floating dock. He cannot see without his glasses, has to wear goggles in the water, and is a new swimmer... so it was quite an accomplishment! He kept paddling, then looking up, and paddling again. He seemed to be getting tired and I kept yelling to him, "Just keep swimming baby! Just like Dory and Nemo! Just keep on swimming'!" He kept pushing, and soon he reached the dock all by himself with a huge smile plastered on his face.

The Long Beach Marathon is just 8 weeks away and we have already raised just over $1000 for NF research! Our team is growing by the day, and I am spending hours training every week to break my 5K PR (Personal Record!)

We still have quite a ways to go toward hitting my $5000 goal, but I know we can do it! CTF is the largest private funder of much-needed money for NF research and treatments. I refuse to give up hope that we will see a cure in my lifetime, and at the least J.T.'s! I know my baby boy is going to live a long healthy life because of the efforts we are making here. All we have to do is Just Keep Swimming'!!

If you have not done so already, I would ask that you take a moment to donate whatever amount you can on my fundraising page. Every dollar counts, and I appreciate your support more than you guys can know!
c_dory.jpg dory nemo image by ultradani

Wednesday, August 11, 2010

Who We Are

Is it wrong to visit your own blog? Today I sat and skimmed through some of my past posts and noticed that most are about NF2, my Mom, and fundraising. If my blog is a written series of my life, I don't want to be one of those people who defines themselves by what has happened to them, by a tragedy or by a loss. I am more than just the sum of my tumors, which sounds hilarious, but is honest. My entire life I have been teased, and I always assumed it was because I was weak compared to the other kids with my never ending health and family issues. Finally, I realized everyone feels that way sometimes. Everyone loses someone. Everyone has a tragedy. We all still wake up the same way each morning. I don't think about being Deaf everyday. I am sure at this point most of the people in my life refer to me as Deaf if I come up in a conversation, but I do not wake up and think about all the things I cannot hear. I just wake up.

Who we are and who we consider ourselves to be are not necessarily the same thing. I think of myself as a runner, and when Paul called me a jogger I cut him with the Hello Kitty Death Stare. I still call myself a vegetarian, but I eat fish now. I am a writer but can never seem to get past writing an outline for a novel. I have a lot of tattoos and used to be a body piercer, but I have a complete needle phobia. People comment on how skinny I am, but I hate my skinniness and want to be muscular like the women in the Nike ads. I don't let my kids watch Nickelodeon but let them watch horror movies with us. Like everyone else, I am a walking contradiction. All I know is I refuse to only be the Deaf girl with NF2, but don't know who else I would be if I wasn't.

By the way my Nani took the time to tell me how unfunny I am the other day, but I think I am hilarious. Maybe she's right.

Friday, July 30, 2010

The dead don't cry...

Every year my Mom's birthday comes and goes without a fuss. No cake to be baked, no gifts to wrap, no overpriced Hallmark card to put on the mantle. 5 years. It has been about
5 years since I have seen my Mom. I do not know her anymore. She is not here. I have memories that shift and fade each time they are recalled. I have photos of her with feathered hair that are small and rounded on the edges with a sepia tone, distinctly reminiscent of those musty 80's photo books we all don't have the heart to throw out. If I did throw one out, who would know? Who would it hurt? The dead don't cry. They don't care, or maybe they do but I have an odd habit of not assuming things.

What I do know, and remember in full clarity, are the discussions my Mom and I had about her impending death. Its an odd thing to know you are dying, and not some day when you are old and hopefully asleep, but soon and most likely in pain. Most things you always worried about begin to seem mundane, but what else is there to say? We talked about the past, but after a while there was no more past to discuss. We had lived the same story and were running out of time. So we talked about the future, about pain, and about death. We talked about it while laughing, and sometimes while crying, mostly while laughing. There are only so many tears you can cry before the only thing left to do is laugh. At one point I sat by her side, holding her hand and thinking about how for so many years I never let her touch me. I wondered how it felt not to be held at night, not to get hugs every day, to sit alone in a room for days on end waiting to die. I felt guilty, the situation was not my fault but still there the guilt sat on my chest. I felt afraid, that no matter how my life went in the end I too would be alone. She must have sensed my sadness, as no one else in the world could, and told me the most important thing anyone has ever told me.

My mother told me that when she died she was going to leave, and she would not be here to see me cry. She said she was curious to see what would happen when she went, but that the one thing she knew was that she would be undeniably gone. She did not want a funeral, she did not want people who never bothered to visit or call her to show up with crocodile tears. Too little, too late. She said "Life is for the living" and told me to live.

When she passed, I felt her leave. My soul wrenched skyward as though it longed to fly away too, my heart leaped out and as it fell solidly back into me I felt the deepest sadness I have ever known. My eyes closed and the blackness was all that existed, but my heart still beat, I lived. She was gone, and now I had to live without her. I cried good solid thick tears that splattered down onto my chest, and when I ran out of tears I wiped my face and said a prayer.

Life is for the Living.

Wednesday, July 7, 2010

My Mom's 45th Birthday

Summer is here, and my kids are running around like crazy miniature people enjoying the sun. To me summer means running hills in the heat, pool days with my kids, veggie burgers on my side of the grill, and planning for the Long Beach Marathon. This is my 3rd year participating in Long Beach with the NF Endurance Team, and it has become an annual priority for me. In between all of this summer fun, NF2 lurks in the shadows, and I can run as fast as I want but it always follows me. That is why it is so important to raise money for research, so we can develop a drug to help stop tumor growth, and in the long run CURE NF2!

July 22nd would have been my Mom's 45th birthday. Nobody should die so young they miss their 45th birthday. It is unacceptable. For all of the cheering, running, planning and attempts at motivating I can do, the one simple thing that it boils down to is I miss my mom. I miss her, and I don't want to go through the painful things she went through, nor can I fathom JT having to suffer as well. For a long time there was nothing I could do, but I truly am hopeful things are changing with the help of CTF and the dedicated researchers out there making amazing advances. So instead of just waiting for it to happen, I run. I run in hopes of grabbing your attention and encouraging you to support the cause in the one way you can.

On July 25th I will be walking the San Francisco marathon's 5K with my Nana in memory of my Mom's birthday. We will spend every mile remembering her, and missing her. I ask if possible for my friends & family to make a donation in her memory. Below is a link to my donation page, I appreciate any donation you can make and thank you for your continued support on this journey.

Wednesday, June 23, 2010

Uncle Ed

The world lost a good man yesterday. I came in from a run today and a serious Paul pulled me into our bedroom with bad news. It seems my Gramps and cousin Kenny had both called to let us know my Uncle Ed passed away yesterday after suffering another heart attack. I knew as soon as Paul said... "Your Uncle..." what was about to come. A flurry of images flew through my mind. The bear hugs he always gave. The dollar bills he would slip to me for each A on my report card, no words to explain, just a smile and a wink. His beautiful house in Hesperia with the huge yard, and how he would encourage me to run wild in his own little chunk of the desert. His faith in God, and the lively intelligent debates we would have over lunch in his kitchen. His 50th wedding anniversary party to my Aunt Cecilia... My Aunt Cecilia in their home, without him. My heart cracked and the tears crept down my sweaty face. My Aunt, one of the most beautiful souls I've ever know. A strong woman who stood behind my Uncle for over 50 years and would now have to walk without him. Her faith will carry her as it always has.

Aunt Cecilia and I last month, this woman is around 80 and still fit and gorgeous!

If there is anything I learned from my Uncle Ed, it is how a man who loves God carries himself. I may not have agreed with everything that his religion entailed, but I respected the dedication with which he followed it. He and my Aunt have been faithful Jehovah's Witnesses since before I was born. I've heard that in his younger years my Uncle was a bit more stubborn, but with age he settled into himself and showed me nothing but respect for my beliefs. We could sit and talk about anything... religion, politics, race... all three mixed together as they often are. He followed his interpretation of the bible as closely as he could, with my Aunt's gentle help of course. A God who created flowers and the color blue could not help but love a man like my Uncle. If he is not with God right now, then surely I do not know God.

I am blessed to have had him as my Uncle, blessed to have had the chance to learn from him and be a part of his life. I will miss him. I already do.

JT, Mica & Uncle Ed

Tuesday, June 22, 2010

A Leader is a Dealer in Hope

I cannot believe this year is flying by so fast! Before you know it the Long Beach Marathon will be upon us on Oct 17th. This year I am once again serving as Team Captain for the Mighty NF Endurance Team! I just built my new fundraising page including a spiffy new photo collage for this year's event and wanted to share it with you all, its at...

(You can always reach my fundraising page my clicking the collage on the left as well!)

I have had my heart broken too many times by this disorder. As you all know I have lost 3 family members, but I have also lost friends. Too many over the years to count. I often receive emails from all over the country, even the world, asking my advice as someone who has had this disorder in their family for so long. I do my best, and stay active in the community, knowing that these people I grow to love will most likely lose the battle much too young. Friends who are my age and just do not wake up one day. I am tired of waking up to find another friend has died, another friend has been told there is no more to be done for them, another friend cannot walk, or hear, and they live so far I cannot even be there to offer a hug. What I can do is tell their stories. By informing more people about NF2 we encourage more donations and raise more money for research. The best way I know how to do that is to run, and so I do the only thing I can.

I am setting a goal of raising $5000 this year. I know it sounds like a lot, but I truly believe if I put my mind to it I can achieve this goal. There are actual clinical trials for drugs that can potentially STOP TUMOR GROWTH going on right now! CTF is the largest private funder for NF research, so by running with them I feel I am doing the one thing I can to fight back. I have to do something, because doing nothing is just not an option anymore. I am asking all my friends and family to join me by donating any amount that you can. Every dollar counts, and together we make a strong team! Together we can actually make a difference and fight back!

Thank you so much to each of you who has taken the time to donate, volunteer, or just offer friendly support! Please feel free to share this link with as many people as you want, there is power in our numbers!

Friday, June 11, 2010

Til Monday...

One week blends into the next as I wait for the sun to realize its summer vacation. Gamma Knife recovery is a simple one, come home and wait for my head to not feel like its in a vise. Easy enough. The kids wander around the house aimlessly, sucking down countless popsicles and passing out for random nap times. All week I have rotated between couch surfing, leaving the house for small errands, and half heartedly cleaning up the messes Paul and the kids leave in piles for me to find. They have taken good care of me, Paul making me a drink while JT cleans up after Mica and Mica tries to tuck me in and bring the puppy to me for a kiss. Its been an oddly comforting time, and I've been able to settle into it and enjoy it while it lasts, knowing full well that come Monday, its back to kicking ass and taking names!

I've avoided eye contact with my Runner's World magazine, knowing if I flipped through it I'd want to lace up for just a quick jog. Instead I'm taking this entire week to do absolutely nothing! My headache has subsided almost completely as of today, yet still I've spent it in sweats reading and cuddling as time ticks by with no accomplishments to claim. My energy is building back up and just waiting to be released on my To Do list, so the sun better come up Monday morning because I have got things to do people! Summer means hot hilly runs, recruiting, fundraising and planning for Long Beach, extra ab reps, laps in the pool, and homeschooling the kids 3 times a week. But not today... today I make the list, and Monday I smash it.

Tuesday, June 8, 2010

The Demise of Mo Fo and his Evil Twin

After a night of tossing and turning, then finally dozing off late in the night, I woke with a start just after 5am yesterday. Paul and I quickly and silently dressed, I kissed my babies good bye and slipped out the door past Sheila on my couch. Paul drove the 45 minutes down to Hoag Hospital. I tried to catch a few more minutes of sleep but my eyes just stayed open, staring out at the sea of red brake lights in the morning traffic. Paul reached over to squeeze my hand, and all too suddenly we had pulled up to the recently built Advanced Technology Center at Hoag Hospital.

The ATC is a shiny new building at Hoag that houses a newer version of the Gamma Knife called the Perfection, as well as an MRI machine and state of the art exam rooms. On all 3 of my previous Gamma Knife treatments I had been wheeled back and forth around the main hospital for different parts, this time everything was within 1 small building and I knew almost every staff member. From my perch on the exam table I could see a reflection of the hallway, and soon I saw what could only be the Tish clicking her way in with my Dad right on her heels. Since I was a child and would accompany my Mom to appointments while my Dad worked, when my Dad showed up I would always feel a sense of relief. A deep trust in my soul that will always believe once my Daddy is here, everything will be okay. I realized I felt that way as soon as I saw the Tish as well.

Once I checked in things began to move quickly. My nurse for the morning, Tom, is also a runner and it was a great distraction to chat about running and different races we have done. He set me up for an IV and I felt the familiar urge to get up and run far away to a land with no needles. This time, I resolved to just breathe, and the IV went in without any mistakes or digging. Dr. Hseih, the anesthesiologist, came in and informed me of all the usual risks... that he was going to inject me with a chemical and I might never wake up, and asked me to sign a paper saying that was just fine with me. I signed and reminded him that during my last treatment I woke up to soon, he promised to work on that. I should really hope so, I thought. Dr. Duma came in to place the head-frame, and my family was asked to wait in the other room. Dr. Hseih appeared at my side and began to inject it into my IV, I felt the familiar panic at my chest and wanted to struggle, but reminded myself of the nightmares I've had in the past and instead just took a deep breath and let go... While I slept Dr. Duma used a power drill to screw a metal halo onto my head at 4 different points. 2 on my forehead, and 2 in the back of my skull.

What felt like moments later my eyes snapped open and I could see past the metal frame on my head into an empty room. I had only been out for 20 minutes, and only felt slightly groggy. My family came back and gave me those big doe-eyed looks and supportive smiles, then went back to their conversation. I am surrounded by people who are used to seeing me be cut open, and on the scale of things Gamma Knife doesn't even warrant a Get Well card anymore! Soon another doctor came in and took some measurements, he kept grabbing the head frame and moving it a bit roughly, my eyes narrowed and I felt the words in my throat but instead I just closed my eyes and waited until he was through. I was then taken for a quick MRI right down the hall before being returned to the exam room again to wait while the doctors set up the treatment plan. The head-frame was squeezing my head like a vice, but I knew that was the only way to be sure the treatment was precise and well worth the pain.

Finally it was time for the actual treatment, we were led like a procession down the hall just one more door to the Gamma Knife room. At the last minute I stopped for the restroom and pulled Paul in with me. Things were getting way too serious, so I made him pull out his cell and record me doing a little booty dork dance, rocking out with my head-frame. We were laughing hysterically when we tumbled back out and the nurse just smiled as she led me toward the machine. The doctors then informed me that Mo Fo has an evil twin. The treatment would last about 45mn versus the 20mn we were originally planning for, and both Mo Fo and his twin were going down!

Gamma Knife looks like an MRI with a dome at the head. I was asked to lie down toward the top and then slowly leaned back until I felt a clunk that rocked my skull a bit and the head-frame locked into place. Everyone said their goodbyes and exited the room. The bed began to mechanically slide back until I was inside the dome from about my chest up. The head-frame was rotated back at a slight angle, so that the weight of my head rested on just the 2 screws stabbing into my skull. It was uncomfortable, but I knew it had to be done and just closed my eyes. The dome I was locked into shot many tiny precise beams of radiation directly at the tumor in its shape while the head-frame kept my head in place. All of these small rays of radiation were individually harmless to the surrounding brain tissue, but when they all converged directly on Mo Fo and his evil twin, it mutated their cellular DNA causing destruction of the tumors. I could just imagine Mo Fo and his twin screaming in high pitched horror, "We're melting! Melting! What a world... what a world..." (um like in the Wizard of Oz duh) The treatment itself is painless and invisible, although it would be so cool if the Gamma Rays were visible!

After about 45 minutes the bed slid out and the doctors came in to help me up. I went back to the exam room for head-frame removal. For the removal you stay awake and although it was not painful I wouldn't say it felt good. An odd compression feeling happens as they unscrew the back screws, and I could feel the bones in my nose almost caving back. Soon all 4 screws were removed and as they lifted the head-frame I could feel warm blood trickling down. I was quickly cleaned up and bandaged with a Lady Gaga inspired head wrap, with attached ice pack of course. The IV was removed, and that was it!

I slept the entire drive home, came in and slept some more. My girlfriend Sheila is so awesome, she watched the kids all day and then at her insistence took Mica with her for a few more hours so I could just rest. I finally woke up a bit later in the day when Mica returned and tried to pet the puppy, but when I bent over blood started gushing from my forehead, and it finally happened, I freaked out. I started yelling for Paul and tears ringed my eyes. I don't like blood, who does? He rushed me into the bathroom and Mica followed us screaming bloody murder. There is no room for panic and tears when a toddler is watching, so I wiped away the tears that never fell and told her it was ok, Mommy just has a little boo boo.

I felt well enough to meet my parents for dinner at Wabi Sabi, where we raised our sake and plum wine and toasted... to my Daddy for his birthday, to God and technology, to my doctors, to life, and to love.

Wednesday, June 2, 2010

Happy Birthday Mica!

Today my baby girl Micaela turns 4, and after a hilariously fun Memorial Day with my parents and whirlwind day at Disneyland yesterday, we are back to the daily grind. JT's last day of 2nd grade is tomorrow, the puppy is walking and starting to play, Paul is getting ready to go back to work, my ASL class is over and summer beckons me to a hot beach. In less than one week Mo Fo is getting zapped with Gamma Knife, and I pray things go well so I can continue running instead of losing fitness and having to start over again. I guess I should be worried about bigger things, like Mo Fo himself, but honestly I am at peace with the situation.

As for Disneyland, we went on so many rides, watched Captain Eo, and ran around the park until finally collapsing for pizza and driving home right as the park closed. I had a dreamless sleep and today I am just enjoying the calm. Life is good, and while it concerns me that things cannot possibly stay this good for so long, I push away the worry and just breathe. However long I have, I am going to enjoy every moment of it.

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Tuesday, May 25, 2010

Mo Fo the Brain Tumor

My blog has sat idly as I've run mile after mile on the treadmill and pounded out reps and sets until I've lost count on the gym weight machines. I've counted calories and stopped drinking beer completely. My reward? I've lost 2" on my waist and no longer have to hide my belly with a belt. It feels great. Having left NIH knowing I was stable, I've been running each mile with a smile on my face, thanking Goddess, and empowering each yoga pose with positive light. I've been at peace with so many things I have struggled with, and have been deeply happy.

Today I saw my neurologist, Dr. Duma, to bring him my MRI reports and CDs from my NIH trip. While visiting NIH I was never shown my MRIs, and was simply told I was "stable." I wanted to double check everything with a neurologist familiar with my case, and assumed it would be an easy visit.

See that big white spot? That really shouldn't be there. Its a tumor. Apparently NIH and myself have differing definitions of the word STABLE. I've named the tumor to make things easier, please meet Mo Fo. Mo Fo is not new, he has been there, and was discussed briefly at NIH. I was basically told it was not a threat at this time or anytime soon. In fact, I specifically remember being the one that brought Mo Fo up, and being told not to worry... for now. At 1.3 cm Mo Fo is very small, but is pushing on my brain stem already. A surgery in this area would be "brutal" as Dr. Duma said. Luckily for me, I have chosen not to have surgery, and instead to be treated with Gamma Knife. A radiation therapy that uses Gamma Rays to destroy tumors. Mo Fo is going DOWN.

I've had Gamma Knife multiple times, on multiple tumors, and each one has shrunk. The procedure involves having a metal frame, called a halo, literally bolted to your head. No joke, once I woke up too early (remind me to ask for a different anesthesiologist) and saw Dr. Duma standing there with a Black & Decker power drill, which he had just used to drill 4 holes into my skull. While I am not looking forward to the halo, the accompanying headache, or the hours of waiting while awkwardly attempting to rest... it is still a 1 day outpatient procedure. I can handle anything for 1 day!

To add salt to the wound... both my Grandma Norma and Uncle Eric died of NF2, but specifically from brain stem tumors. They are tricky little bastards, known for literally choking people out. The brain stem is ridiculously delicate, which is why we have to radiate now while the tumor is only starting to dent the brain stem, rather than wait until it is fully pressing on it and there is no room for the inevitable swelling. People who have similar tumors and choose traditional surgery usually cite the fact that Gamma Knife can cause swelling around the tumor, but surgery causes swelling too so I am not sure why that would deter them. Either way, every patient has to decide for themselves, and I've decided to have Mo Fo treated with Gamma Knife. Dr. Duma said it needs to be done very quickly, my tumors have a habit of growing fast and if the tumor gets any closer into the brain stem then Gamma Knife will not be an option and I will be facing a horrible life-threatening surgery. Not going to happen.

So tomorrow when I run I am still going to have a smile on my face. Yes, Mo Fo has got to go, but at least I have the best options possible available to me.

Friday, May 7, 2010

2nd NIH Visit

I think I have finally recuperated from our recent cross country trip. We drove up to the Bay Area, left the kids with my grandparents, and then flew to Washington D.C. for my bi annual visit to NIH. I am participating in a study of NF2 by Dr. Asthagiri which involves me flying to NIH every 6 months for the next 5 years. On this visit I had MRIs as well as exams for swallowing, physiatry, and neuro ophthalmology. Everything went smoothly and the ASL interpreters helped tremendously, proving my studying has really paid off. On the final day of appointments Paul and I sat down with Dr. Asthagiri to go over my MRI reports. As usual I was tense and concerned, especially about the tumor in my lower lumbar which I had treated with Cyber Knife last July. It had been a small tumor low in my spine not causing any specific problems. However, I knew it would grow and have to one day be dealt with. If I didn't treat it with Cyber Knife then, I would be facing imminent surgery. I rolled the dice and went in for radio surgery. For several months all seemed fine, but then towards the end of the year I experienced some localized swelling and pain. This is normal and I tried to stay positive. I was unable to walk or bend at the waist, so my local GP worked with Dr. Adler at Stanford to get me on steroids for a week, which brought the swelling down temporarily. I was terrified that the damage was permanent, but over a few months the pain dissipated. So on this visit to NIH I was to be told whether the tumor had stabilized, shrunk, or grown. If it had grown it would need to come out surgically, which is pretty low on my list of things I want to do this summer!

So Dr. Asthagiri came in and told us that the tumor had indeed shrunk... from 1.4 to 1cm!!! That is a big change in less than a year! Paul and I are ecstatic of course. I avoided an entire surgery with an out patient, painless procedure. When I had the Cyber Knife treatment I took a nap, and went for a run right after, and now 10 months later the tumor is smaller! Cyber Knife is not a magical fix all for every person and tumor, otherwise all my NF2 friends would be having it. Everyone and every tumor is different, but for me, things could not have worked out better!

After our NIH visit we flew back to the San Francisco airport and drove home with the kids. We were so happy to be home, and at night I hugged my kids just a little bit tighter. We dodged a bullet, a tiny 1.4 cm bullet!

Friday, April 16, 2010

I'm Deaf, NOW WHAT!?

As I explained in my last post a huge chunk of my time at the CTF patient forum was spent learning about vestibular schwannomas, and the current status of their available treatments. VS can be life threatening if not treated correctly, but that is not why people focus so much on them when NF2 causes so many other types of tumors to be just as concerned about. Patients and parents who are thrown into the NF2 pit with a sudden diagnosis are almost always completely focused on and terrified of the idea of Deafness. Just the word Deaf can seem foreign and uncomfortable, oddly similar to death, and conjures up an entirely different culture of people than those of us in the hearing world. Having been hearing for all of your life, the idea of becoming Deaf seems unacceptable. People get angry, go into denial, cry, and fight back, reaching out desperately to every possible option that floats around the NF2 community. Chemo, implants, surgery, radiation... ultimately finding that most people with NF2 end up hard of hearing or Deaf. Fighting is definitely an option, but if or when the time comes acceptance is just as important...

So I ask, I'm Deaf, NOW WHAT?

1. Learn ASL. No excuses. I have heard them all, and for each one you can come up with I can introduce you to someone with problems much worse who has learned anyway. Learning ASL may seem pointless when no one else around you knows it. As you learn you will come into contact with more people who do, and build a social circle that you can communicate with freely. As you learn ASL try to sign as you speak so those in constant contact with you begin to naturally learn as well. Parents, go to ASL classes even if your teenager is in denial and refuses. In time it will pay off.

Places to learn: check with local community colleges, schools for the Deaf, and community recreational programs.

2. Take responsibility for your own communication. If someone is trying to speak to you in public, be prepared. Have a small pad of paper and a pen, or download a notepad program to your PDA. Just tell them "I'm Deaf, please write it down/type it for me. Thanks!" If they say no, and I hate to tell you people will, then they really aren't worth your time anyway, problem solved! (feel free to shoot them a dirty look and maybe stick your tongue out at them!)

3. For any doctor appointments, and this is SO important for the NF2 community, request an interpreter. If you don't understand ASL quite yet, request CART. (This is when a transcriptionist sets up a laptop and types on a screen for you. You can also request this at school!) They are legally required to provide this service for you. Do not allow people to treat you like a child, speaking right in front of you about you for 5 minutes and then writing 1 sentence to fill you in. If you are trying to rely on writing or *gasp* lip reading at any appointment, then you wont be treated equally. Respectfully demand accessibility, and report any medical personnel who does not comply.

4. Get tech savvy! Sidekicks, iPhones, Web Captel, video phones, ip relay.... text messaging is only the beginning! Make a few Deaf friends and ask for recommendations. You don't need anyone else to make phone calls for you, there are too many options to ever have to miss an important call again! Don't sit there next to your Mom or friend waiting for them to fill you in while they do all the communicating for you, you can use relay to call anyone, anytime.

5. Stand up for yourself. This is a recurring theme. Do not sit and be ignored in group situations. Do not let your family get away with telling you "nevermind" instead of filling you in. If you feel ignored, those guilty for the social snafu are most likely completely unaware. Speak up, you can even make a joke of the situation, but just let them know, "I have no idea what you guys are saying and can someone please fill me in?" 9 times out of 10 they will fill you in and then ignore you again if you allow them too, instead stay actively involved in the conversation. If you missed something, don't lie and pretend to understand, because people will pick up on it whether you think they do or not! If this sounds like a lot of work just to socialize, it is. Which is where those ASL skills and Deaf friends will come in handy! You might lose a few old friends along the way, but those who matter will stick around, and you don't have time for the rude ones anyway!

6. Get involved with Deaf Culture. I have heard countless times from people in the NF2 community that they don't think they will feel welcome within the Deaf community. You can define yourself however you want, but Deaf is Deaf. You can't hear. I have never once met a Deaf person who snubbed me for not being Deaf enough. In fact you will find the Deaf Community is an amazing hodgepodge of interesting people from all walks of life! HoH, CODAs, Late-Deafened, born Deaf, interpreters, ASL teachers, and even Mom's teaching their babies to sign are all active members in the Deaf community. Rent movies with Deaf themes, read Deaf books, learn Deaf culture history. As blessed as we are to be a part of the NF community, those of us who are also Deaf have the unique opportunity to explore an entirely different world! Deaf expos, Deaf coffee chats, Deaf Mardi Gras... the list is endless.

I am not going to lie and say going from hearing to Deaf is not challenging. I have my bad days when I miss certain songs, or just feel really left out in a social situation. The important thing is to allow yourself to embrace the challenge as well, and accept the person you have become. You choose your attitude every morning, why not choose pride?

Are you Deaf? What tips can you share for those still working on acceptance?

Tuesday, April 13, 2010

2010 CTF Patient Forum

This past weekend my husband and kids joined me at the 2010 CTF Patient Forum in Las Vegas. I was excited for months ahead of time, and so relieved that Paul's hernia surgery healed quickly enough to attend the symposium just one week after his surgery. Most of the weekend was captioned with CART services, enabling me to read everything said by the speakers on a large screen. CTF did a great job of giving NF2 its own attention. NF1 is so much more common it tends to overshadow NF2 at most of these conferences, which excludes and frustrates those of us fighting NF2. Still, out of 187 attendees I was the only Deaf person! I really expected there to be more, being that NF2 causes Deafness and it is an NF conference, but for whatever reasons the NF2 community did not show their strength in numbers. Those of us who did attend were very happy to be included and enjoyed visiting with others who are seriously dedicated to the cause.

CTF knew that those of us who came to learn about NF2 did not need or want to sit through hours of information on NF1 just to get a little attention at the end. That has been my experience in the past. Instead, the issue was dealt with by including a 4 hour break out session completely dedicated to NF2, featuring top doctors from HEI and Ohio State. I was mostly looking forward to "Complimentary and Alternative Medicine: Where is it headed?", but the speaker canceled at the last minute and instead the entire session focused on vestibular schwannoma. VS are the most commonly associated tumors with NF2, and are required diagnostic criteria of the disorder. These are the bilateral tumors of the vestibular nerves that cause Deafness, facial paralysis and balance deficits. If left untreated they can squeeze out the brain stem and even grow forward towards the eyes causing blindness, and eventually death. They are the major concern of almost every newly diagnosed NF2 patient, and this break out session did a great job of addressing the 3 current treatment choices available to patients: watch & wait, surgery, or radiation. Surgery was the active option of choice amongst every single doctor that spoke. We were told that irradiated tumors will simply grow back, and may even turn malignant at a later time. The opinion given was that most young patients would want to avoid radiation because of these possible complications. I commented that many people with NF2 don't have the liberty of worrying about possible complications 15 years down the road, we have to fight back now and consider quality of life if we even want to live that long. Radiation is generally outpatient and minimally painless, while brain surgery is a hugely painful and dangerous risk. I thought the doctors presented a bit of a one-sided perspective on the issue. They gave the rates of regrowth for irradiated tumors, but not for surgically resected tumors, which they did not mention tend to grow back as well. There is no right answer when it comes to NF2 and treatment, but both options are worthy of equal consideration. The doctors who presented seemed mostly concerned with hearing preservation and ABI placement, personally I am more concerned with survival.

That all being said, I appreciated all of the information presented. The doctors were highly educated men with an obvious desire to help their patients. As I previously mentioned, the entire discussion did revolve around vestibular schwannoma and hearing preservation, and I commented on this as well stating that while I obviously understand the need for VS discussion in an NF2 session I would like to have been informed about all of the other tumors we face as well. People with NF2 develop many different types of tumors and can grow them on every nerve ending in the entire body. VS and deafness tend to be the least of our worries when we have so many spinal tumors we can't even count them and are facing paralysis and death. None of this was discussed, but the need to discuss them in future sessions was acknowledged and agreed upon.

The Forum is an annual event, and having this NF2 break out session this year was a huge step for those of us interested in staying involved with research. In the short amount of time allotted the doctors managed to cover a lot of important topics, and I have no doubt that in subsequent years the topics will broaden and improve. If we as an NF2 community want to be given attention by the researchers and doctors, then we have to start showing up in force! Those who stay home, don't get involved, don't donate, and don't research their disorder for themselves are putting all of us at a disadvantage. Many of us are unable to do many things, but all of us can do something. If you want to be involved, but just don't know where to start or feel overwhelmed, you are not alone, and I am making it my business to be available for anyone who asks. There is strength in numbers, and together we can reach a cure.

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Wednesday, April 7, 2010


This morning I set out on a run to the gym, with the intent of working out there and then running back. It is a 3 mile trek, which makes a 6 mile round trip. It felt great to be outside, and at each corner I looked to the next in anticipation. Just one more mile, one more stop sign, 1 more bus stop, 1 more building... at each mini goal it felt as if I had finished something, when really I had a lot more to go, as well as the run back. Even once the entire work out was finished, and I was home drinking my protein shake, I realized I still wasn't done. Today's workout was only one of my three scheduled runs this week, and after this week is this month... and well, you get the point! So although breaking my goals into portions makes them seem more feasible, at what point can I say I have truly achieved my purpose ? Is that even possible, or would one goal simply beget another, like another corner to run past?

When Paul and I were dating we wanted to find an apartment that fit our meager income, and for weeks I knew I would finally be happy if we could just get our apartment. When we finally moved in we set our sights higher, and now we always say that when Paul becomes a Journeyman things will be great! I know there will always be something else to yearn for. Another goal, another obstacle, another setback, another corner to turn. Life is just a series of these segments, and at times the entire cycle can seem to stretch out endlessly, even pointlessly. When do I get to be happy? When do I finally arrive? For me, the answer is the path. When I run each step is fun, I don't only enjoy the run when it is finished. Paul may not yet be a Journeyman, but he loves going to work each day and I feel blessed to live the life we do. I may have health problems, but if I didn't it would be something else. I can't sit around waiting to die, when I am alive and well today. I can't waste my time worrying about something that hasn't even happened yet. I can't allow the inevitable happenings of life to weigh me down, I'm too busy running forward!

People ask me all the time how I deal with all of the stress in my life, and when I tell them I don't think my life is very stressful I am always met with an incredulous stare. I have a roof over my head, food on the table, a family that loves me, freedom to choose what to do with myself and usually enough resources to support those desires. What else is there to ask for? I take every moment as it comes and make a conscious choice to enjoy it. The day I stop doing that, I may as well die, because that is no way to live. I may not run another marathon, I may not break another PR, but today I ran, and that is enough for me.

Monday, March 29, 2010

JT's First Run!

I banished another lazy day today with a sudden fabulous idea. I was attempting to lace up my running shoes and simultaneously read Perez Hilton when I noticed JT laying around in his pajamas at 11am. I told him to go get his running shoes, we were going for a run. His first run! He hopped right to it and before I knew it we were jogging out of the complex for a 2 mile jog around the block. He took off fast and burned out early as I knew he would, but constant encouragement and cheering kept him moving. I told him if we do this often he can run with me at my next event, and he says he wants to run a marathon! I have no doubt one day he will, and I will eat his dust! I left my watch at home but we made surprisingly good time, and in way under a half hour JT sprinted the last quarter mile to give a strong finish to his first run! Go JT!

We will be running the NF Walk at the CTF Patient Forum next month! Who's in?

Wednesday, March 17, 2010

Day 3 = 3 LBS?

Day 3 of my Bikini Blitz meant a short tempo run, yoga class at PMAC and an 8mn ab routine. It feels great to be up and moving, ready to conquer the day! At the gym I jumped on the scale and I have already lost 3lbs in 3 days! That is no doubt water weight since I have been chugging water like a mad woman. I'll take what I can get!

Yoga felt great but reminded me that I need to also focus on my posture. I've had 5 or 6 spine surgeries now to have tumors removed all down my spinal cord. Each time they cut through my muscles and remove bone to get into the cord area. I don't have any rods or pins, I just have a general weakness in my entire back which makes it hard to stand straight, and impossible to put my shoulders completely back. In yoga today I realized I was rounding my shoulders forward in almost every position when I have been practicing my yoga alone. It hurts to force the correct posture, but I am going to do it anyway and hope that in the long run it relieves some of my back pain. Its better, and healthier, than popping a pill.

I'm sipping down my protein shake right now but need to get moving, Mica has gymnastics, then it is early day for JT, and we have a playdate then karate! The couch is looking fabulous to me right now but I refuse to give in.

Inspiration of the Day!

Tuesday, March 16, 2010

Bikini Mentality

Now that I know JT is just fine, and my lumbar tumor has miraculously stopped swelling, its time to take this blog back to its original purpose! I have been walking a fine line with my fitness, throwing in runs only once or twice a week, adding seafood to my previously vegetarian diet, and munching whole boxes of cookies at 9pm while watching tivo. I glanced at my calendar yesterday and realized I have just over 3 weeks until the CTF Patient Forum in Las Vegas!

The header of the event's website is a gorgeous gold with palm trees swaying on the horizon, an obvious reminder to expect gorgeous weather that weekend. Gorgeous weather in Vegas means one thing: Bikinis. Yes, after having 2 kids and countless surgeries I, with every other woman my age, still yearn to rock an itty bitty teeny weeny yellow polka dot bikini! Well, maybe not yellow, ew. Last summer I came so close! I even sported a tankini with minimal anxiety. This is my summer, and I started my plan yesterday.

Several people have asked what my plan is, and I wish I had some magical secret, but the truth is when I want to get fit I just focus on the goal and control myself. I have a handful of rules that work for me:

1. No coffee! It is dehydrating and addictive, makes your teeth yellow, and causes a crash at midday that tends to lead to a carb binge. Get up, splash ice water on your face, and get moving!

2. Hit the gym for cardio, weights, abs, then yoga at least every other day. In between workouts stay busy and on your feet! I try to have my workouts and all chores done by noon, its a great feeling!

3. Drink tons of water, and nothing else. I carry a big refillable sipper bottle with me at all times. The ones with the straws seem to make it the easiest to consume larger amounts.

4. Eat something small every 3 hours. Today I am spreading out: 1 packet of oatmeal with almond milk and flax seed, a rice milk and whey protein smoothie, an activia yogurt, a green smoothie, and whatever I want for dinner, but only a small salad plate worth. (and when I say whatever I want it means: vegetarian, nothing fried, avoid extra sauces and dressings)

5. No food after 7, allow ONE glass of red wine! I'm only human people!

6. No TV or couch time til after 8. Daytime TV is a brain drain anyway. Schedule a lot of social & volunteer activities.

7. Be flexible... we have pizza every Friday and I always order veggie pizza and have it cut into squares to maintain portion control. On donut day Paul always grabs me a blueberry muffin. If I really want something, I have it, but not the whole box. If you don't allow for tiny cheats you wont make it, you will freak out and binge within a week. This is not a diet, it is a mentality and lifestyle. No counting calories, just use common sense!

That's it! Its not so hard, I promise. Once you are used to it it just feels natural. I followed this for a long time and was in great shape, but I fell off the wagon. Well I am climbing back on!

Thursday, February 25, 2010


For the last month every breath I have taken has settled deep into my chest, weighing me down and crushing my every step. Everything beautiful seemed cruel and daily tasks became painfully redundant. The world stopped, and I wanted nothing more but to turn it back further into time when my son was a tiny baby full of promise and potential. Each night as I have tucked him in I've lingered just a bit too long at his bedside, planting kisses on his warm cheeks and whispering promises and prayers over his head. Today Tish and I took JT to CHOC to learn more about JT's brain tumor behind his right eye. Always a joy to be around, JT skipped into the MRI room and held his own sedation mask, pretending to sleep immediately and stealing smiles at the anesthesiologist. Everyone was smitten with him, his personality is infectious, and as he faded into twilight his hand dropped limply from mine.

He was heavily sedated this time around and struggled into consciousness, crying and shivering, only to fall back asleep sporadically over my shoulder. Time ticked by slowly and soon he sat up with that gorgeous smile, asking for a popsicle and apple juice. His tears already forgotten, we wheeled him across the hospital to see Dr. Loudon, his pediatric neurologist. Tish and I nervously sat passing the time as JT happily played on the floor. Soon it was his turn, I walked into the exam room and prepared for the worst...

Dr. Loudon swooped in with a smile and a firm handshake. I immediately asked what was going on with his eye, and Dr. Loudon looked at me completely perplexed. His eye? What about it? I asked if he had reviewed the MRIs yet and he said he had, and what was I talking about. I said his neuro ophthalmologist diagnosed him with a brain tumor behind his right eye last month and Dr. Loudon immediately brought us back with him to his computer and reopened the scans. Tish and I stood there awkwardly, stealing meaningful glances and assuming that at any moment Dr. Loudon would turn to us and say oh there it is. Instead, after taking a very thorough look, he turned and said he had no idea why his eye would be bulging because there is no tumor. He then suggested I find a new eye doctor.

What could I even say? The moment was ridiculously anticlimactic. I had a list of questions about tumor fighting drugs and radiation therapies, and instead was being referred back to a normal pediatrician to test for simple non-tumor related eye issues. My heart was exultant, but my head wont let the news sink in. If I believe it is true am I going to have my heart broken again? I feel vulnerable and suspicious, jaded by years of bad news I don't know how to be grateful for amazing news. We left the building and walked toward our van, laughing and chattering as though nothing had just happened. Nothing happened, the world never stopped, it was there all along, and suddenly I can breath.

Wednesday, February 3, 2010

And so it begins...

I am angry at the Universe. Angry at God. Angry at my husband, at the doctors, at myself, and at anyone around me who doesn't realize the sky is falling. This isn't about me, my anger is self centered and pointless. Right now I need to be the facade that shapes JT's perspective. The rock that teaches him resiliency. The lie that tells him everything is okay.

My son JT is the 5th person in my family to be born with NF2, and I had convinced myself that with technology advancing as rapidly as it has there would be some sort of treatment available before JT even grew a tumor. Everyone else in my family started growing tumors around their pre-teens. So why was my baby diagnosed with a brain tumor yesterday?

In November Tish and I both noticed JT's right eye was bulging. (If you are not up to date on why this is a problem you can catch up here) I fought to get him in immediately at Dr. Borchert's, and he was kind enough to squeeze us in after the rest of his appointments yesterday after 5. I sat quietly, assuming he would turn and tell me JT is fine and it was a case of over bearing motherhood. Instead he turned with a concerned look and asked when JT was going to have MRI's. He goes in the 25th of this month and the doctor said that is really good because.... JT has a tumor behind his eye in his brain. The doctor wrote, "[The tumor behind his right eye] swells when tired because blood vessels in the tumor drain slowly after lying down." He needs an MRI to find out the size and type of tumor. Tumors are named for the type of cell they originate from, and there are several different types of cells behind the eye. The doctor assured me that NF2 tumors behind the eye are generally benign and slow growing. I have been assured by doctors one too many times in my life to swallow his placations.

My concern is that there was a marked change in appearance in JT's eye from only November to New Year's Eve when Tish saw him and was immediately concerned. She hadn't seen him and the change was more apparent to her than to me, being that I see him every day. Until the 25th I have no real answers, and even then will most likely be advised to simply "watch and wait."

I am flooded with prayer promises and I cannot help but fleetingly think they are nothing but words to keep our empathy busy. How many prayers does it take to get an answer? Yet as I form the thought I pray for forgiveness for that weakness of faith. To this God whispers a hug, the God I know only loves us more when we are angry.

Now is not the time for childish suppositions of invincibility, now is the time for reality. Obviously JT has a complicated case of NF2. Developing tumors pre-pubescently generally means a person has a severe case, what does that mean for JT today? Absolutely nothing. What does it mean for him in a year? I cannot answer that. The worst part of NF2 is the idea that you are always broken but never really sick. He is not in pain nor is he going to have treatment any time soon. When faced with a challenge as a Mother I want to meet it head on, and instead I can do nothing but watch as my child grows more tumors and lives their consequences. I look at JT and I see his potential. He just scored in the 84th percentile state wide on the standard testings, he taught himself to spin like Michael Jackson on the ice in an hour his first time skating, he is ridiculously handsome and so amazingly special. I have a deep rooted and hopefully irrational fear that the Universe wants to claim him for itself, too bright a star to walk amongst us.

So I pray, and I feel that I am doing something, anything, rather than absolutely nothing.

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