State of the Brain Address

On Thursday Paul and I made the drive to Newport Beach to see my neurologist Dr. Duma. He has been my primary neurologist since I was a teenager, and I don't foresee that changing at any time. I trust him, we have a good rapport, and he has used Gamma Knife to treat over a dozen of my brain tumors without any major deficits. Tumor number 12 to be obliterated by Dr. Duma was my first treated tumor to have caused such serious problems as I have had over the past year. I consider that a damn good run. My concern now is that after my last MRI with him I was told the swelling was stable, when in fact #12's evil twin Lucky 13 was swollen and angry at the left side of my brain. For those of you keeping track that would be the opposite of stable. I wanted to see Dr. Duma myself for an updated opinion, a state of the brain address if you will. It was overdue, I mean I am a bit attached to my brain and like to make sure it isn't going to just explode or melt one day.

So I hobbled into the office... oh did I forget to mention I had an adverse affect to the medication that drains the fluid from around my optic nerves? Yes, it also depleted the fluid cushioning my joints apparently. Good to know, I found out the hard way when I sprained both my ankle and knee in one weekend. Ok carry on... so I hobbled in, we sat down with Dr. Duma, and his immediate concern was for my weight loss. The last time I saw him I mentioned food was low on my list of priorities these days and he told me I didn't look like I was hurting for food. Since then I have gone from 123 to 104 pounds. My family keeps saying I am too small, my girlfriends can't stop telling me how great I look, and I am just happy to be back in a size 2. Dr. Duma was only slightly amused, ordered another abdomen MRI and told me to eat more. I told him about my concerns regarding the imprudent use of the term stable when referring to brain damage. His response was that I seem to be doing fabulous lately, and that the swelling is just going to be a permanent irregularity we see on every MRI. He doesn't foresee any serious problems stemming from it. I said that may be so, but humor me, if this huge burn spreading across my brain does perchance become a problem, what are my options? He said that if necessary he would go in and surgically resect the offending tumors, that the option is there if necessary one day. He also pointed out that all of my other zillion tumors seem to be behaving right now, and as I had told him myself I am still seeing clearly even without the crazy fluid draining/ankle spraining medication that I relied on to see just a few months ago. He gave me a Medrol pack to help my joints recover, a prescription for physical therapy and of course the abdomen x-ray. At that point I was released back into the wild, free to live my life for another 6 months.

So now I am in a terrific mood. I am as healthy as I can be at this point, and on March 1st our little family of four is moving into a house! Yes, finally, we are moving on up. Life is good, fabulous really.

Sleep & Run

If I could describe the last month in one word it would be, "Sleep." I fall asleep early, wake up and hustle the kids to school, then fall back asleep until it is time to pick them up. I grab them back from school and try to catch up on the insidious pile of laundry tumbling out of the hamper, do a round of dishes, wipe the bathroom down and rearrange some pillows. Then I lie down exhausted and try to answer homework questions from my Hello Kitty cave before throwing together a dinner. Every day I feel a little better. Every doctor's visit I get news, some good, some bad. Nothing tragic and nothing life changing. Sometimes when I am at the store and JT is helping me find what I need I stop and look around and for the millionth time I wonder what it would be like to be them. The same answer generally bounces back at me, and it says I wouldn't want to be. I like myself, oddly enough I love my life. Besides if I wasn't me I wouldn't have the family I have, and I don't know anyone with a family I would rather have. That may be the irrationality of human nature speaking, but I am comfortable with that.

In fact I am generally very comfortable lately. People have disappeared, as I knew they would, and I just can't muster the empathy to care. I've had the same best friends for a very long time and they aren't going anywhere. My family has proven themselves, not that they needed to, but time and again they do so anyway. I am surrounded by people I trust and love. People who handle everything because they want me to just rest so I can get better. What more can a girl ask for? Probably a lot of things, but no matter what you get there is always something else to want, so I choose to just be happy as I am.

I was definitely happy last weekend at the Long Beach Marathon with the NF Endurance Team!! My fave weekend of the year (right up there with Christmas, don't judge, I love fudge and presents.) So our entire team kicked butt. JT did the kids' run with Haley, and smashed the mile in 9mn! Paul's little brother Thomas kicked the 5K's ass, I mean he is like 14 and finished in 21:30. I wanted to adopt him and train him I swear. Uncle Franky and I stuck together for the 5K, for my safety and his motivation. I yelled at him the entire last quarter mile, then we ran into Sarah Johnson, and I grabbed JT from the cheerleaders, and we all ran in as well as we could for a big finish. It felt wonderful and I was proud of everyone involved!

Now its back to life as usual, whatever that may be for me, it works.

Inching forward without movement

I am in no mood for verbosity, I am blessed to have a lot of people asking me how I am doing but not really able to see well enough to text and email everyone back. So I sit and blog, and share it in one place, and when people ask me I direct them to my blog to be read as they wish... or not. I am hoping by updating it often, and pouring all of my negativity and hope into one bright page I can barely see, to purify the rest of my conversations from excessive morbid tumor talk. I caught myself being a total Debbie Downer last week at my friend Val's bonfire. Looking back, I probably talked more about NF then anything else that day, and that is not the life I choose for myself, or the conversation I wish to trap people in. We all have our cross to bear, every person you pass has a story of heartache. Its the human condition, and I refuse to be defined by mine.

Over the last couple of weeks I have been attempting to adjust to my lack of vision. I can see, but it hurts to focus, and so I try to conserve my time spent doing anything that requires me to strain. So my follow-up MRI was done Monday, and Tuesday I sat down with Dr. Duma. He does not feel going blind is inevitable, because the swelling is contained and nowhere near my optic nerves. The swelling on the right atrium of my right lateral ventrical is just nuts. If I remember correctly from the Biology class I actually passed in high school, the right side of the brain controls the left side of the body and visa versa. So the vision tract fibers lie across the atrium, and the right side of the fibers are where the swelling is, so the left side of my vision in both eyes is affected. I can't see anything to my left, and people walking up on that side startle me, but the right side of my left eye is fine. So I have these two right-sided windows struggling to work together, with a chunk of blur and nose in between, and they are becoming increasingly sensitive to bright light. Dr. Duma now agrees there is some necrosis happening, which is when healthy brain cells start dying off from radiation spillage. Radionecrosis being the technical term. On my last visit he did not yet want to commit to that diagnosis and sent me home to just find my balance and hope the swelling went down. As of this MRI the edema is still a problem and not shrinking on its own. Dr. Duma doesn't want me on steroids long term, as they are just horrible to be on, and he believes pulses of treatment may help. So I'm back on steroids for 2 weeks, still on the anti-seizure meds for the small eye seizures the swelling is causing, Vitamin E and a blood thinner to promote blood flow and healing to the area, and have been referred to a doctor who does Hyperbaric Oxygen Therapy in Irvine. I know absolutely nothing about it yet, but I consult tomorrow, and will share what I learn at that point and if we are moving forward that route. Most likely, yes, because I trust Dr. Duma's opinion. When I chose Gamma Knife for all of these tumors I jumped on the ship, and I'm in, all or nothing. Dr. Duma has kept me running, breathing, and seeing this long, and prolonged my Mom's life by probably 10 years. No matter what I do these tumors will grow, it's the tumors, not the treatments, that are at fault. I refuse to be cut up and filleted until there is nothing left of me to move, and I am a flickering light trapped staring out of a corpse. Instead I do my best to be aggressive in my treatments while passing the time just like everyone else. I do laundry, read to my kids, play cards with my husband, cook us all dinner, have friends over. I push a button, I fold a shirt, I chew my food, and life inches forward. At times it is mundane, at others poignant, but mostly just normal. I sleep a lot, and nobody wakes me up. Paul and I don't really bicker. The kids try to do little sweet things without being asked, and together put a blanket over me when I fell asleep on the couch. Paul took two weeks off to just breathe with me, and sometimes I walk in to find him washing dishes. We watch movies in increments, until it hurts too much, and then both fall into bed and sleep as deeply as we can into dreams where life is abnormal, because nothing is broken. What would we do with life if there was nothing to fix or fear? What would we hope for, or learn from? When I wake up I am happy, my kids are usually tangled in our sheets and light cuts through my blinds warming sections of my legs. Moments are all anyone has, and I'd rather have mine then anyone else's.

Blur

The edges of my life are blurry, purpose and intent comingled with days empty of accomplishment. I squint at the TV or computer, and then struggle to focus on the sea of people in a store, before finally looking to Paul and seeing only shapes and movement as he squeezes my hand to reassure me. He teases me mercilessly, and I laugh as only we can, at the ridiculousness of being 28 and deaf, and increasingly unable to really see anything from far away or focus on anything up close, on my growing list of old lady ailments, at my inability to do most of the things I love, but my odd ability to constantly find new things to love, that are then taken away as well. We laugh as he talks and I cock one eyebrow in a very yoda-like way, as though I understand it all, even without having any idea what he just said. I look away and squint, he looks the same direction I do, and squints, and we both erupt in hysterics. Then there are the moments I panic, when I realize even if my body gets strong enough to run again, I would be terrified to run not knowing where I am at all times, and possibly nauseated by the bouncing horizon I used to direct my prayers toward and now have to sheild my eyes from. Then I remind myself I am overreacting again, of course everything will get better, I will run, and I will see. Maybe not quickly, and maybe not well, but jogging and squinting are fine substitutes. I push away the fear until it floats away and I am distracted by another thought, because if I let it rise up it might drown me, and I can't really swim anymore.

My MRI to check on the brain swelling has been moved up to Monday, because of the aforementioned vision issues. Last week I spent a couple of days with the kids and my Nana swimming at Harris Ranch. This weekend I am taking a family vacation to San Diego with my husband and babies to live my life the way I want to, like everyone should. I'm going to have fun, and Paul has promised to stick next to me so I don't get lost... again. I get to "see" some of my family in San Diego, stay in a hotel on the beach and follow my kids around Legoland for a day. Reading over this to edit before my Dad attacks with his virtual red pen (in my defense I CAN'T SEE)I realize that being ill has afforded me a sick sense of entitlement (pun intended.) Every day people tell me have a glass of wine, or just eat whatever you want, or go right ahead in line, or take a nap at 11am and leave the dishes be, just enjoy yourself, because you DESERVE it. It is a dangerous concept, especially when there are children involved. I wont have my children growing up thinking that when hard times come it is acceptable to just let life slip by. Blurred or not, life goes on, and we all make the best of it.

What kind of mother would I be if I didn't mention JT started 4th grade and Mica started Kindergarten this week, and they are both amazing and adorable and the lights of my life, and everything I do, I do for them (cue Bryan Adams song.)

This is your brain on Gamma Knife

My life is as stagnated as this blog. In 6 weeks I have gone from getting up early every day to run my house, care for my kids, bang out routines at the gym, hang with friends and cook fresh healthy dinners from natural ingredients... to laying on my couch with a neck pillow, getting my chores done in increments between dizzy episodes. My life was simple, but it was mine, and I want it back.

Last week I flew out to NIH for my biannual MRI's. I assumed these headaches would be explained away by a sports injury. I would continue to nurse my neck and take Excedrin, focus on yoga and jogging, and then slowly ease my way back into my routine, back into my life.

Instead I was told that one of the brain tumors I had treated with Gamma Knife has doubled in size in the last 6 months and introduced to this image...

The bottom images are 6 months ago, and the top images are now. The left images show the tumors themselves, and the fact that they look black inside is good, tumor necrosis has set in. However, the images on the right show the swelling and fluid around the tumors.

Yes, that top right image is my brain now... and no I am not on drugs. Doesn't it remind you of those old anti-drug campaigns? "This is your brain... this is your brain on... radiation spillage?"

Yes, somehow, radiation spilled into my brain and a huge area of it is crazy swollen. I have no further information until my GK doctor gets me in this week so I can show him the MRI's.

The doctor I see at NIH for the NF2 Clinical History Study said "I am afraid for you." Honestly, that is a bit disconcerting coming from a man who sees worst-case-scenario patients on a daily basis. Apparently the swollen area has a bunch of nerves that control... vision. Yes, my vision is now at high risk.

I can deal with a lot, and I will continue to do so. I cannot even fathom being blind and deaf but the idea terrifies me. I think of how hysterical I was when the power went out and I couldn't find Paul for a few minutes. Everything was pitch black and no matter how loud I called out I had no idea if anyone was coming for me. I sat down and curled into a ball until I felt Paul's hands touch me, and then I just hid in his arms until he lit a candle and shadows lit up the walls. How would it feel to never escape that darkness?

I have to deal with this as I always do, I compartmentalize, and put things away, and just don't deal with them. Dwelling on a hypothetical situation is a waste of time, and I have half-convinced myself that I am being dramatic, and that any day now I will get my life back. But as day turns to night and another day of baby stepping through my chores passes, I can't help but glance at the fear edging my mind as I go about my business.

So, I am on steroids to hopefully bring down the swelling. I am to see Dr. Duma ASAP and have another MRI in 3 weeks. If the swelling or radiation has spread, then I am proverbially f*cked. At that point we would discuss "options" and in the meantime I have been sent home to let my radiation... marinate? I am a total hermit as of now, I am afraid to drive in case I have a dizzy spell or just suddenly go blind. I am bored and feel guilty for trapping the kids when they should be out enjoying their summer vacation. I am consciously forcing myself not to lay all of this on Paul, and trying to do nice things for him whenever I can because I don't want our family to revolve around me, and also because he is an amazing person and pleasing him makes me happy. So today I rest, and come Monday I don't care how I feel I am going to get a little piece of my life back. One day at a time, I will get it back.

From Cupcakes to Bikinis

I should say that taking a 2 week break to do nothing but sleep, eat cupcakes and cuddle was a bad idea. In actuality it was genius, and definitely a great use of my time. Tomorrow reality comes crashing back in the form of Monday and I am ill-prepared to say the least. I didn't bother to get the kids back on schedule a couple of nights ahead of time, or to detox them from all the junk they have consumed. I am going to show up at their schools tomorrow and drop them off exhausted and filled with remnants of 2 weeks of cupcake sugar, then me and my pot belly will be escaping to the gym for some punishment. I have only worked out twice this entire time, and haven't even been doing my daily yoga. I look like a puffalump and if one more person asks me if I am pregnant I am going to tell them no I just went to the schmashmortion clinic but thanks for asking.I know all the cool moms are doing Insanity right now, but I am not good at following through with home routines. I have to get out of the house and once I escape you have to drag me back, so I will typically work out for up to 3 hours 3 times a week. I am still learning how to best use

that time, and becoming more efficient as I devour issues of Men's Health. Keep in mind this routine is the foundation, but I constantly change little things to avoid a plateau, keep my muscles guessing, and avoid burn out. Also, remember to always maintain proper posture, keep your belly button drawn close to your spine, and do every move from your core. Here is the current version, and it is rocking for me in a hurts when I sneeze kinda way.

Warm Up: Treadmill 5K in under 25mn

Weights: all supersets = Do every move 10 times, repeat that section 3 times without stopping.

Rest only after all 3 sets of 10 are complete before moving to next station. Please wipe your

sweat off the machine!

A. Medicine Ball sit ups on Bosu Ball

B. Go from laying flat to touching feet while holding pilates band

C. Lay in a pilates V shape and pulse hands near sides 100 times.

A. Chest Press on weight bench

B. Scoot to bottom of weight bench so lower body hangs off and do 10 of each: leg lifts, leg curls, bicycles, scissors, point toes high and flex feet up and down, lower into plank and pulse...

A. Incline Squats

B. Pulse 30 times on squat machine

C. Alternating lunges

A. Set resistance weight machine to a height right above your head, use rope attachment, face machine and holding posture grab rope and slowly lower to upper thighs, and slowly return to start.

B. Pulse 20 times near middle of move.

C. Roman Chair leg lifts, slowly

(how you feeling!?)

A. Free weight bicep curls

B. Tricep dips off edge of bench

C. Stretch upper back with resistance band

Ta Da! Part 2 is done... now...

Cardio! Cross Trainer for 1 hour (I am only up to 45mn) Start out at a comfortable setting (6)and move quickly for 2 minutes, once warmed up increase setting super high (13) and keep moving. You should feel like you are running uphill with bricks on your feet! "Run" for 3 mn, go back to first setting. Repeat this 2mn/3mn pattern for the entire workout. 2 "walk" 3 "run." Make sure you have a towel and water!

Stretch Now move to a mat for some yoga! 5 sun salutes, then stretch legs every way, then

back to sun salute but slowly, stretching deeply in each pose for at least 3 to 5 deep breaths.

When you come to stand up, exhale, lean down to touch your toes, as you slowly roll yourself back up inhale deeply and guide energy through your entire body. As your hands pass your head reach up and out, exhale, releasing all of the strain out to the universe and feel it dissolve. Continue this move as many times as you need to feel really cleansed and finally end in...

Namaste and thank God for the ability to work out like you just did!

Well that is what I do at the gym right now, putting it down motivates me to stick to it, and

maybe one of you will draw some sort of inspiration from it. Either way, if I actually stopped taking cupcake breaks and did this 3x a week for even 3 months I would be ripped! I am tired of

"woulda" and "coulda" so tomorrow it is on like Donkey Kong. I think that freakish heat wave earlier this week was the universe's way of reminding me it is almost summer and time to shed the winter layer! I don't want thinspiration, I want fitspiration!

Cupcake Break!

The lazy days of Spring Break have been a much welcome respite from the rat race of the school year. I've been sleeping in until 11, rolling over to find Mica still in her clothes from the night before passed out with her thumb hanging out of her mouth, and JT flung across my feet with his hawk half smashed down on one side, the puppies going nuts in their crate and my dogs curled up in little balls, not even glancing at any of us. At this point, Paul has been gone for 5 or 6 hours already. We've visited family, stayed up late watching movies, and drank way too much wine. Well I did, not the kids. When the days got long and the kids got bored I pulled out my Nook and we opened up Vegan Cupcakes Take Over the World. We have been gorging on cupcakes for weeks, and my pot belly is loving it...

First up on Mica's last Thursday of school I volunteered to bring the cupcakes for the "Green

Day Party." The teacher was hesitant because she doesn't allow any sugar, the party menu consisted of various green veggies with

ranch dyed green to dip, green sugar-free jello and some plain

chips. I knew something had to be done to save Green Day! I busted out my Nook and made... wait for it... 4 dozen Vegan & Sugar-Free Green Agave Cupcakes with Mint Chocolate Icing! Oh yes, I went there. I hauled them all in and they were a hit, with everyone but Mica who said they were gross. Then at dinner when

we played "high/low" her low was that "Mommy brought me a cupcake and I thought it was going to be SO good and it wasn't Daddy, it wasn't, and I was like

'

what is this what is this!!!'" Then she shook her head ruefully. Whatever Mica Stinka, everyone else devoured them and a

teacher with a diabetic husband took some home for him. My only mistake was using Mint instead of PEPPERMINT extract. Duh.

These are the only cupcakes we didn't finish, they dried out super fast, but they were unique!

Next were my attempt at self-control... the Sexy Low Fat Vanilla Cupcakes with blackberry

jam, a quick swirl of Chocolate Buttercream Frosting, and drizzle of simple icing and a few dark

chocolate chips for garnish. Mica added (non-vegan) pink heart marshmallows to hers but everything else was animal free, low fat, and delicious!

Most recently Mica and I got back to basics, enough of this low fat sugar free crap, am I right!? We picked up a package of vegan oreo knock offs and made Cookies N Cream cupcakes. They are amazing, modesty is futile, we added crushed cookies to the basic chocolate cupcake batter, and then more crushed cookies to the

basic vanilla

buttercream frosting, along with a tiny bit of almond extract. We piped the frosting

on to the cupcakes in huge, chunky creamy swirls and topped each cupcake

with half a cookie.

Spring Break is only half over, this year JT got 2 weeks and Mica got 1, but I made the executive decision to keep her home for the 2nd week as well. Her teacher agreed, she isn't missing anything but playtime at that school. No matter what happens to me in the coming years I'll always cherish the simple things I do now with my kids, and look back on these lazy cupcake days as some of the best, most fattening and delicious days of my life.

St. Patrick's Day Goes On...

How many years ago did my Mom die? 6... 7? I remember the day in spurts of clarity and rhythms of pain, but I cannot place it in context with any other events or dates. It was St. Patrick's Day, and Tish was making her corned beef and cabbage, which I was really looking forward to. My Mom had gone in for a simple procedure but had insisted I not make the hour drive with JT since I had been there a week before and was planning dinner at my Dad and Tish's. That's right, I was already living with Paul and JT was about 2. Mica was not even a pipe dream yet. I was young, in and out of community college, and just learning about providing a stable home for my baby. We were at the table eating, I was devouring a huge plate of meat and potatoes, my Dad took a phone call and mentioned that my Mom's procedure had not gone well. I was only slightly concerned, NF2 sucks and she had something new wrong every day for the last 5 years it seemed. I had spent years rushing off to hospitals only to sit and wait for hours, and assumed I could at least just finish my food. So I did, I sat and I ate that corned beef and cabbage. I chatted with Tish and took care of JT. Paul and my Dad probably talked about beer or work, I don't remember at all. After that everything is fuzzy. I know my mom slipped out of consciousness and into a coma, which she fought until they tied her down. I know the last person she saw was the owner of her nursing home. I know that her hands were really cold and I know that I got there too late. I don't know when my grandparents arrived, but they did. I have no idea who had JT. I think maybe a day even passed, but the only thing I really remember is the panic that rose in my chest when she actually died. Somehow I think I thought she would pull through like she had for so long. Instead I sat in a hospital hallway crying and everyone else disappeared. I can see all of it like a movie playing in my head, and then I am missing huge gaps of time.

Every year I avoid St. Patrick's Day in alliance with my guilt for letting my mom be alone in her last moments. Every year I count the years, I write, I spend some time on my couch just resting. I don't cry, I ran out of tears a long time ago. I never eat the traditional foods or wear green, I do the bare minimum of my Mommy duties as related to the holiday. I make sure the kids have green shirts and buy something pre-made for their potlucks, that is all I have to give, because I can't avoid the guilt every time I start to enjoy it.

This year something shifted, and I noticed it but chose not to acknowledge it until I was sure. When the potluck sign-ups came around I signed up to make green vegan mint chocolate cupcakes. I spent a lot of time on the recipe, shopping, and finally baking. I baked for almost 4 hours and when I was done there was green St. Patrick's Day glitter mixed with smudges of fudge all over and 4 dozen green cupcakes sitting pretty ready for the potluck. I helped dig out green shirts for the kids this morning, and realized I really should have bought new ones. I felt guilty again, but for dropping the Mommy ball, not for something that happened 6 years ago. I took Mica to class and instead of heading home I stayed and volunteered. While the kids had story-time I googled "vegan St. Patrick's Day" and my eyes immediately hit a corned beef and cabbage recipe. I jotted down the ingredients I would need and decided to make an entire meal out of it tonight with roasted red potatoes and Irish soda bread shaped like a shamrock. I don't think it happened at any one moment, but at some point I let go of the guilt and life filled the space it had been occupying.

Vegan Cupcakes Take Over my Kitchen!

Like many other bloggers the movie Julie and Julia has inspired me to blog through a cookbook. I saw the movie a while back, and every cookbook I have flipped through since made me think "I should make everything in this book!" Then I find a recipe that looks disgusting, or I just plain forget and never get started. I basically assumed I am a bit too ADHD to really make it through an entire cookbook. Paul bought me a Nook Color for Christmas and I just bought Vegan Cupcakes Take Over the World on it! There are a ton of amazing cupcake recipes, and suddenly it hit me that there is no such thing as a disgusting cupcake, and this would be the best book to do! As the book says, I could totally use a little more padding on my butt, and cupcakes seem like the best way to do so! Luckily, I have a little kitchen helper in Mica, so once a week we will take over the world with our cupcakes... or at least this blog...

This week Mica and I started out with the most basic chocolate recipe in the book as well as the chocolate buttercream frosting. Everything is vegan, but I admit we don't buy any special sugar. Apparently regular sugar is sifted through bone char!? What the heck? I mean seriously, I can only do so much.

I used no actual animal products and we are following each recipe to the letter. We took the recommendation of decorating with sprinkles and sliced strawberries, half of which we ate dunked in the frosting before it could possibly make it to a cupcake! We made a huge mess,

got sprinkles all over my kitchen, and slaved for several hours, but in the end it was so worth it! That night Paul begrudgingly took a bite and his face immediately changed when the taste hit his mouth. They were absolutely delicious, if I do say so myself. (and I do.)

*FYI I don't think I can post the recipes, that is like plagiarism, but there is this thing called Google that may help LOL

Another Almost Vegan Weekly Meal Plan!

As I was chopping sweet potatoes today I realized I had another weekly vegan meal plan to share! Well, it has eggs twice so it is not 100% Vegan, but there is no meat, milk, cheese, butter etc. If you wanted to be pure about it you could use tofu in the breakfast scramble and buy a vegan sausage patty instead of the Morning Star brand which has egg in it. The kids have been busy with dance and taekwondo, so I am in the habit of cooking everything in the early afternoon, then turning it off when I leave and simply reheating when we get home at 7. When I do this I am still able to get the kids in bed by 8! With meat dishes I don't think that would really work, but with vegan dishes a little heat and extra seasonings brings everything back to life!

The more meal plans I post the more you will notice I cook the same things over and over, like most moms, with the occasional wild card! This is what I set out on the table this week:

Monday: Soyrizo, bell pepper & black bean mix; heated corn tortillas; homemade guacamole; chopped romaine; Daiya vegan cheese; Dessert: TJ* Fruit Bars.

Tuesday: TJ Whole Wheat Gnocchi; marinara from Anthony's Ristorante; sauted kale; yam chips. Dessert: TJ non-dairy Mochi

Wednesday: Sloppy Janes (made with tempeh); chopped romaine; pickles; whole wheat thin-which for Momma, TJ whole wheat buns for fam; steamed broccoli.

Thursday: (not quite Vegan) Breakfast for dinner! Whole Wheat Pumpkin & Flax Pancakes; Morning Star Farms veggie sausages; hashbrowns; Reddi-Egg omelettes with Daiya vegan cheese.

Friday: Pizza & Family Movie Night!! Vegan Berkeley Calzone from ZPizza for Mom, Papa Johns for Fam. Popcorn & candy for everyone! (I'll be noshing on my fave vegan candy bar, a Mahalo**)

Other things I am cooking this week:

SO Delicious Coconut Yogurt with chilled quinoa and cinnamon

Falafel & hummus on pitas with cucumber & tomato for snacks/lunches

Vegan Cupcakes and Vegan Banana Bread

*TJ= Trader Joe's!

** I buy all my vegan goodies at Viva La Vegan, a new local vegan store that has saved me from having to go to Henry's every week!

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.

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!?)

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!

http://www.active.com/donate/nflongbeach2010/Olivia

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

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.

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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Portions

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.

Breathe

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.

Why I Run

I was recently asked to submit a blog post for the NF Endurance Team entitled "Why I Run." My response was posted today on the official team blog! Below is the complete text of the blog, the NFET Blog had to be edited for space, and it was edited by Emily over at CTF who I want to hire as my personal professional editor because she did a fabulous job!

I don’t remember a time when I did not know what Neurofibromatosis is. My earliest memories are of my Grandmother and Uncle in hospital beds at my Great-grandmother’s house. I would crawl into the bed with my Grandma Norma and she would bribe me with little cookies. She couldn’t hear me and was so skinny, but had the most beautiful Colombian accent. My Uncle was only 25 but as a child I thought he must be older than my grandfather, his crooked smile and patched eye only added to his character. By the time I was 7 they had both passed, and all I had were photos that still hang on my walls, fading with time.

My memories of my mother are much more complicated and expansive. As a child I watched in awe when she dressed and did her makeup, she was vain and beautiful. As a teenager I averted my gaze in fear as I helped her dress, her entire spine mottled by layers of thick scars across a back that was hunched over from being cut open countless times. The makeup was long discarded, her face drooped in uneven frowns, her eyes unable to produce the tears she so needed to release. 10 years. In 10 years NF2 took an amazing, vibrant, and crazy woman, and robbed her of her vitality, beauty and purpose. I assumed the same would happen to me. Every surgery, every scar, every tumor, I would one day relive and call my own. I vowed to live fast and die young, throwing sand in the face of NF2 and taking away its power. I had surgery after surgery and began to lose things I always knew I would. I was numb and in pain at the same time, I saw no other way to exist. My son JT was born and I knew he had NF2. It was confirmed when we found out he was blind in one eye from a tumor. I had more surgery, and then became completely Deaf. Soon after, my mom passed away. I was alone and surrounded by hearing people who only seemed to care about trivial things. I joined the support group my Mom had always leaned on, the NF2 Crew. I met other people going through the same things, and much worse. People who were still going to school, working, and accomplishing things without using NF2 as an excuse. I knew things had to change.

Then, I discovered running and the NF Endurance Team. An entire group of people with the same concerns and fears I had who were fighting back and inspiring others to do the same. My first event was the Long Beach ½ marathon in 2008. As the race started and people began to move forward I thought back on my journey. Each mile was another memory to embrace and leave behind, another NF friend I had met, or even lost. I proudly wore my bright yellow singlet, and crossed the finish line into the arms of my husband. I had accomplished something concrete by raising money for CTF, but I had gained so much more along the way… acceptance, friendship, and purpose.I run because it helps me to release the pain, I run because I know my lost loved ones are proud, I run to show others that you can overcome anything, but mostly I run because I can, and I never ever want to forget that again.

Never Give Up Hope.

Happy Holidays!

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