The Fabulous Running Mommy

State of the Brain Address

2012-01-21T14:58:00.000-08:00

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.

Non-Results?

2011-12-17T12:23:00.000-08:00

So every 6 months or so I get all morose and assume I am dying when I have my MRI's and am forced to see the images of my atypical brain and spine splayed across a huge computer screen at NIH. Sometimes I look and want to get upset, but it seems I would be overreacting given the general apathetic professionalism the doctors maintain. "Look, here is your brain, we can't count the tumors so just be careful mmmmkay? If you die, please be sure to let us know so we can replace you immediately. Now time is money, keep it moving." I ask what a spot is and they look at me patronizingly and tell me that is just more edema, don't worry, if it gets too bad we'll shave your head, saw it open and cut everything out. Now buh-bye, oh and make sure the nurse has your current payment information."

I seriously doubt any doctor actually knows the meaning of the word "stable." 3 months ago I had a brain MRI here near home just to check the "possible edema," you know that massive cloud of debris smashing up a huge chunk of my brain? I was told I was stable, I looked at the screen and remarked it did not look stable to me, but was promptly shooed away by a tech and told not to strain myself looking at the pretty pictures. Fast forward to this week at NIH where I was told the edema has now spread to both sides of my brain. This news was delivered with a practiced straight face, and I took it as such that I was meant to simply nod. At this point they tried to put me back on steroids and I started laughing. I told them oh we have done that, repeatedly, different types at different doses. They made me manic and unable to get through the most basic of tasks. Yet here we sit, with more swelling, so no I would rather not continue the crazy medication that is not working at all. I told him the medication I take for my eyes has helped tremendously over the last few months, and not that he had asked but I was able to see much better on it which to me signified less pressure. He nodded his assent and we shook hands and said good bye. At this point he went back to his life of delivering news to patients with an unreadable face, and me to mine in the corner of my couch.

I am home on the same medications I left with, with a most likely shortened prognosis, not that I was offered a prognosis or options beyond steroids. It seems odd to me that while the simplest of tasks can frustrate me to the point I want to cry and can't speak, going through the motions of neurological exams and results feels completely ordinary to me. So the doctor and I have that in common at least.

Change

2011-12-07T16:27:00.000-08:00

Before my eyes even open I smell the remains of a fire burning out and hear the roar of the sea nearby. Warm water laps at my toes and beneath is something as smooth as silk. I slowly look and see exactly what I expected, a vast expanse of black sand so smooth it cannot stick to the warmest of skin, running along a deep blue ocean without waves as far as I can see. The horizon is lined in pink and a soft sun you can look directly into warms me to the core. A deep breath draws in air, thick and sweet, without a hint of the ash the fire should have caused. The water begins to recede and an empty day settles on my chest. There are no numbers to count or time to pass here, no people who speak and nothing to need. Here I exist and nowhere else does. I remember things from before of course, but they seem of no consequence now. I do not ruminate or miss, I have left everything behind and live in a seclusion so thick that change seems both inevitable and impossible. A sigh escapes my lips and rather then explore all of the things I have seen before I simply lie back down and continue to exist. No dreams disturb me, for there is nothing to desire. No nightmares either, for there is nothing to fear. Each moment lies undefined and every step lacks depth. Finally, I place my finger on my lip and without further thought I bite myself as hard as I can. Warm blood trickles down and I realize I have not seen red since arriving wherever I am. I have not felt pain. Until now. Change has come.

Sleep & Run

2011-10-19T15:41:00.000-07:00

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.

Paring Down to Basics

2011-08-23T17:52:00.001-07:00

I have been procrastinating on writing this blog for days, a feat in itself as I am incredibly limited in my choice of activities. Paul has been taking me for Hyperbaric Oxygen Treatment in Irvine as per Dr. Duma's advice to hopefully heal this radionecrosis in my brain and get my life back. I am ridiculously blessed to have access to this level of care, the means to attain it, rides to get there, people to take me there and back and care for me. As I lay in my little chamber inhaling the oxygen and visualizing healing bright light helping my brain cells stitch back together, little voices nag at me with negativity, I cannot give in to them. I have to just be positive. I have to be a hippie and read the Dalai Lama and not eat meat and drink tons of water... if I don't do those things, I don't know what else to do. So I take my medicine and vitamins, and when I find myself doing nothing I get up and do SOMETHING... even if to most it is nothing. I've been walking after Mica around the complex on her bike, trying to cook a real breakfast every morning, and washing a few dishes. I take my time caring for the kids, read them extra books, tuck them in extra tight, and then try to squint through maybe one show with Paul before my eyes just can't handle the strain anymore and I lie with my eyes shut pretending such a slow day has actually tired me out when all my body wants to do is RUN.

Meditation, prayers, deep breathing... at some points I want to say cut the crap, let's get real, and just throw something!!! But I have people... little people... who rely on me to be their Mommy. I have Paul who is bearing just as much stress as I am... and I have myself. Yes, me, I am worth the effort. Even if I had no family, nobody to love me, I like to believe I deserve to try for me. So I will.

What that means for me... and for those in my immediate circle, is that as of now I am on a needs-to-happen basis. I am stepping down from my role as Team Captain of the Long Beach NF Endurance Team. I will be attending, and walking the 5K, and cheering for all of us as we fight together. My co-captain John will be handling logistics. He is awesome and I am really lucky to have my good friend running things so I do not have to worry.

My fundraising page will remain up but I am not going to be going out of my way to do anything right now, emails, organizing, all of it feels like a challenge. This thing in my brain is like a burn, and while I am trying to maintain that it WILL HEAL, as of now I basically have brain damage. I panic, I can't drive, I pass out, things confuse me. I would be able to deal a bit better if I could just get comfy with my Hello Kitty blanket and pass the time in bed playing with my family and watching TV, but Paul has to work, the kids have school, and I can't see the TV. I feel scared and trapped and will definitely be adjusting, and learning who really cares and sticks around by just keeping me company so I don't lose my freaking mind any more then I already am. I don't expect most people to stick around, it is how life goes. We all have our own issues, as my Uncle says, "A tissue for your issue?" We come into this world alone, and we leave alone, and the only way to be happy is to focus on how much compassion we can give, and not worry about how much we absorb. I constantly see people talking about how disappointed they are when people don't DO things for them, reach their expectations, care. All we can do is control our own moods, and every time we feel alone, give, because its the only thing that cures the human condition.

Yes, I am all wise and yoda-like now. I blame the meds. Meh.

So to bring this all together for those of you who do want to do something:

Come visit me, I love the company. Please excuse the mess, duh. Emails, texts, whatever, I am still here people.

If you are one of my kids' friends' parents, they are available for playdates and can use the escape.

If you pray to anyone, throw some in for me if you can and throughout the day if I pop into your head picture a bright white light cleansing and healing me.

As always you can donate on my fundraising page at... http://www.active.com/donate/nflongbeach2011/Olivia

NEVER GIVE UP

PS if you receive the link to this multiple times, my apologies, same goes for typos.

Inching forward without movement

2011-08-18T22:07:00.000-07:00

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

2011-08-09T23:08:00.000-07:00

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.)

JT is not my Uncle Eric

2011-07-20T10:17:00.000-07:00

We have been living in triage mode for the past week since being scared by the huge blotch of swelling on my MRI image at NIH. Now that I have been put on medication to control the situation and am able to look forward more then a week in my life, I have to deal with the rest of the news we received at NIH.

As self-centered as I have been over the weekend for personal preservation of my sanity, JT did in fact go to NIH for exams as well. Pretty much everyone in my NF2 family has started with spine tumors around the age of 9. I think all of us close to the situation had begun to mentally prepare for JT to have a spine tumor either this trip or in the next couple of years. Spine tumors are no walk in the park, and the idea of my baby's beautiful smooth brown back being cut into, the muscle being cut through, and his tiny baby spine being touched, makes me nauseous to the very pit of my stomach.

So on Thursday when JT saw the ENT at NIH he sat looking at his brain MRIs a bit too closely. I didn't like the look on his face, I didn't like how he kept switching from series to series throughout the scans, zooming in and out and rotating. Finally, he turned to us and told us that JT has an Acoustic Neuroma*. The ENT was very conservative with his diagnosis, stating that it could be a swollen blood vessel. Paul held my hand and held me back, because we have been together long enough that he knows what havoc "possible tumors" have wreaked throughout my life.

So I held it in, and I looked at JT and took a breath. I waited until we saw Dr. A the next day for our big final appointment, and I asked his opinion. Apparently, JT's hearing nerve is already swollen. That breaks my heart. Sometimes, these tumors grow on a nerve, other times like my own, they weave themselves in, making it virtually impossible to simply remove them. All of JT's hearing and balance tests came back great, and the images are so small, there is really nothing to do right now but wait for the next MRI to begin to gauge how aggressive this tumor is and what our response will be. Just waiting, and looking at my baby everyday wondering how long I will have him and how much he will suffer.

Every NF2 patient is affected completely differently, each genetic defect, each tumor, each treatment is completely independent from all prior history. That is what the doctors tell us. Those of us with familial NF2 have seen different. I have pretty much followed the same pattern as my Mom, and any regular Fabulous Running Mommy readers know that a recurring theme of mine is to remind myself that I am not my Mother. My Mother also had a brother, my Uncle Eric. I have fond memories of my Uncle Eric sprinkled with uncomfortable images that scared me as a child. My Great-Grandmother Leticia, who I called Titi, spent a large part of her life caring for my Uncle Eric and Grandma Norma as they lay in hospital beds in her home wasting away from NF2. She was

an amazing woman and dedicated her life to their comfort. I would visit, and I remember walking in as she situated my Uncle, and seeing his long pale limbs as she adjusted his blankets. He was so skinny, and completely hunched over from the spine tumors. Tumors that started at a very young age. He had eye tumors, and although imaging was not what it is now, he had Acoustic Neuromas at a young age as well. His eyes bulged from the tumors and he wore a patch over one, and I distinctly remember him being so tiny that when he sat in a wheelchair he didn't even fill the seat. He was as small as a child in that big wheelchair, with a grown man's mind trapped inside of him. He was fiercely intelligent, and in

his last years he found God through becoming a Jehovah's Witness. It filled his heart and although I have been told he was an angry person at times, I only remember him as loving and curious. When I was in 2nd grade the teacher called my name to go to the front office. For no apparent reason I thought my parents were pulling me out to take me to Disneyland. I was a ridiculous child, seriously. I was so excited, being called out of class was really special at that time, my parents both worked and I was happy to see them. I believe it was only my Dad who was there, which was a bit disconcerting, and he was way too solemn for a trip to Disneyland. Still, I was my usual chatty self, and talked his ear

off the entire way home, throwing question after question at him. When we got home I remember sitting on our white sofa across from he and my Mom, who was very quiet, and being told that my Uncle Eric had passed away. I don't remember any reaction, my memory goes blank for years after that. I knew what death was. My Grandma Norma had passed away a couple of years prior. I just remember being told he was gone, and knowing how young he was. In later years some of the blanks were filled in. I was told that at the service I was too young to attend all of his fellow Jehovah's Witness members from his hall filled the church, it was standing room only. His battle and faith were an inspiration to them all. To this day, knowing that about him, fills me with a pride for my Uncle who lived such a short and tragic life. He was only 27 when he passed, but he didn't curse his fate, he found God and filled himself with what he could. He never had a wife or children, o

r many friends until he joined the church. His childhood photos are slightly off, his eyes not quite staring straight ahead because of the tumors. Just like JT's.

JT is not my Uncle Eric. The fact that his tumors are starting to grow while he is so young does hint at a severe case, and that terrifies me to my core to look at my JT, my angel, and think of him going through the hell that is a severe case of NF2 before he even starts high school. Will he be deaf? Will he lose the rest of his vision in his good eye from the small tumor he has in that one as well? Will he have a paralyzed face and give me soft kisses that simply press upon my cheek without a pucker as my Mom's did? Will he struggle to communicate and make friends, and question the commitment of time involved in earning a college education when compared to the life span he may not be promised? Will he simply s

nap as I did and be lost, would he be lucky enough to find his way back as I did? Will he be able to work, and support a family, and have a wife who can handle having a husband she must care for? Will he have children and will they have NF2? Will he live long enough to see those possibilities?

And so it seems although JT and I live different paths, we end up on the same one for now. We simply can't worry about the future, we have to live for today, and love each other as fiercely as possible for as long as we can. Neither of us will be held back by long gone fears that really have no true hold over our current situation. We can learn from those before us, and be brave and filled with promise today.

*An Acoustic Neuroma is the hallmark tumor of NF2. These tumors grow bilaterally on the hearing, balance and facial nerves. They are why I am deaf and have horrible balance. They are why my Grandma, Uncle and Mom, as well as many of my best friends are Deaf. They are why so many of my loved ones and friends have facial paralysis and cannot smile. Treatment options include surgery, radiation, and hopefully medication if we all keep supporting research for a cure!

One Day at a Time

2011-07-19T12:17:00.000-07:00

The next time I have potential Gamma Knife damage on a huge area of my brain, remind me to see my Gamma Knife doctor before freaking out. This morning my Dad took me down to Newport Beach with my scary MRI CD in hand to see Dr. Duma. Over the weekend I had a few episodes where my vision on the left side of my left eye got a bit... wobbly. I saw a black spot at one point. My headaches have been much better on the steroids, but I am still just tired and nauseous all the time. Of course, its hard to be tired on steroids, so I have been exhausted while filled with pent up energy that has fueled my anxiety. I was ready to get information from Dr. Duma today about the huge area of swelling around my right ventricle, and expecting the worst after Dr. A scared the bejeesus out of me last week in DC.

Dr. Duma came in, looked at my scans, asked questions, and let his resident do a neurological exam. He then told me that when I had Gamma Knife in February he treated both ventricle tumors as well as the tumor running down the center of my brain, and that unfortunately a healthy area of my brain had gotten a bit too much radiation as well. I asked how this happens, he said it just does, it's a known risk. I asked if it was radionecrosis, and he said he does not like that term because it means brain cells are dying, and they are not. (sigh of relief) He said the entire white area is edema (swelling) and that I should continue the steroids for about another week and the swelling "should" absolve itself within the month.

Excuse me? Did I misunderstand? Last week I was told this was a really dangerous thing on my brain and I could be facing surgery. That my vision fibers were involved. I had already heard from Dr. A Monday morning clarifying that the fibers involved were directly related to the left side of my vision, which was scary because of the weird shimmering I have been having to my left.

Dr. Duma believes the swelling in the ventricle is causing small visual seizures. He also said it is time for me to get on anti-seizure meds because I just have a lot of tumors, and any of them could cause a seizure, but specifically for my current situation it is the best course of action. He said the modern anti-seizure meds are not a problem to take and I should do fine on them. I have to take steroids for one more week, and got some Xanax to calm the heck down. While Dr. A wanted me to MRI again in 3 weeks, Dr. Duma said if my headaches don't come back then 6 months is fine. I asked if for my own mental health and well-being we can just MRI in 1 month to be sure this issue is under control and he agreed although he really didn't think it was a big deal! I reminded him he wasn't walking around with this in his brain but he pretended not to hear me, HAHA, I am teasing, I love Dr. Duma. I don't blame him or Gamma Knife for this ordeal. I blame the fact that I have NF2 and countless brain tumors, and treatment is never going to be perfect. I will still have Gamma Knife in the future when possible and will continue to avoid surgery.

I asked what daily activities could potentially trigger seizures or problems. He then dropped the bomb on the Fabulous Running Mommy, he said hard exercise is not recommended for patients in my type of situation. He basically said, don't get red in the face, but that I can listen to my body and find my balance. No more marathons? No more speed miles? No more weight lifting? I'd rather be slightly chubby and be able to see my children grow up then hurt myself trying to attain a level of fitness slightly out of my body's reach, but the idea of giving up such a large part of my active lifestyle is a bit disheartening.

So, I was sent home with some meds and a smile, and told not to worry. I trust Dr. Duma's opinion because he is a Gamma Knife doctor and sees this all the time, and he said it generally resolves. I've been so afraid all weekend, I am having a hard time believing it could be that easy. My plan is to take my meds and rest until the MRI, and then take baby steps from there. One day at a time is all any of us can do, but a lot can be accomplished in a day.

This is your brain on Gamma Knife

2011-07-16T16:25:00.000-07:00

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.

Back Stabbing Steroids

2011-06-24T09:58:00.000-07:00

Have you ever had a friend who always smiles to your face, but you suspect as you turn they are raising their eyebrows at you? A friend you always come through for, but who always seems to be unable to return a favor? A friend who practically lives on your couch and in your fridge, but you're not even sure where their place is at? A friend you always invite, who never invites you? A friend who makes you fat?

Yes, steroids are my two-faced friend.

When we're getting along everything is fabulous. Steroids and I haven't spoken in so long, it took me this long to trust them again. I had no choice but to start a dose to control the post Gamma Knife brain swelling, and steroids showed up with a kind smile, offering to ease my pain. I started taking them yesterday, but as usual I had to wait for the steroids to catch up like a bad friend who is always late just because they "fell asleep."

Well I woke up and they came through! My head feels clear for the first time in a week. I'm up, I want to do my Insanity workout, cleaning, getting dressed, and taking the kids out for the first time all week.

I've told the steroids they can only stay for 1 week, and that should be fine, its only when they stay longer that the cracks in our relationship start to grow.

When I'm on steroids for longer they don't let me sleep, they keep me up all night thinking about nothing that matters. They make me want to eat non stop, steroids are my bad friend who wants to drive through In n Out at 2am knowing full well I am trying to follow the Elite Nutrition Program! After a while steroids make me paranoid, and I start hearing voices out of mistrust.

No, steroids are not my friend, but we can hang out for now.

I don't get headaches.

2011-06-23T14:57:00.001-07:00

I don't get headaches.

Sure, if I knock back a few too many whiskey and cokes I may wake up a bit foggy, but water and fresh air clear that right up.

Starting last week I've been waking up from a fitful sleep every morning with a stiff neck and killer headache. I kept ignoring it, blaming it on exercise, over sleeping, lack of carbs.

I stopped exercising. Got up on time. Ate some carbs.

Still, I wake up with a headache.

Over the last week the entire situation has worsened. The pain comes in waves, my temples throb, and my eyes feel heavy. It makes me nauseous and for once I have no appetite.

A week of firsts.

I don't get headaches.

My childhood was controlled by headaches. Not mine, my Mom's.

My Mom was an amazing mother, she had dinner on the table every night, kept our house immaculate, and faithfully watched Oprah every day. Her and my Dad were grossly romantic, I'd catch them stealing kisses or hear them giggling around corners. My Mom would get completely dolled up every day, with bright pink lipstick and tons of big 80's hair. She always had these crazy acrylic nails and her toes were painted bright enough to match. She was funny in a very honest way, she didn't try to be silly and witty like my Dad, she would just say things that happened to be funny and get mock-mad when we laughed at her. She'd lay out in our backyard covered in tanning oil with a big pink visor on reading Danielle Steele novels all summer, turning redder and redder and never reaching that elusive tan. She was strict and over-protective. She knew where I was every moment, what I watched, who I spoke to and even what I ate. She breathed motherhood. Then one day we were all out front of my house and my Mom was bending over to plant something in the little dirt area by our front door when she cried out and fell. My Dad reached her first, and the memory is unclear to me but my inner childhood video camera tells me she was holding her head. All I know for sure is that was the day everything changed for all of us.

She had a headache for the rest of her life.

She fought it, she fought herself, and she fought us.

The pills, the daily doctor office visits, the pain shots, coming home to an empty house and having no idea where she was until finally figuring out an ambulance had taken her... again. The hyperventilating and crying, and ultimately becoming bed-ridden as she hid herself away from the world. The divorce, the nursing home and her death.

She had a headache for the rest of her life.

I don't get headaches.

Long Beach NF Endurance Team Kick-Off!

2011-05-31T14:12:00.001-07:00

This year has been a bit challenging for the Fabulous Running Mommy. It went by in a blur of tumor growth, radiation, losing friends to the disorder and traveling all over for the best of care while still running and raising my family. I've been blessed with love and support, and somehow feel stronger for persevering through it all. Now with summer heating up my mind is turning toward my favorite weekend of the year... The Long Beach International Marathon on Oct 9th!!

Yes I am still running for a cure, and wont give up until we get it! The Children's Tumor Foundation has been growing, you can read about the specific ways we are accelerating NF Research here: http://www.ctf.org/NF-Resources/accelerating-nf-research-progress-through-strategic-planning.html. You can see that in the DDI program specifically CTF has invested $970k in developing potential drugs to treat NF. Those specific awardees have gone on to secure almost $4.5m in further funding from outside sources!

Reading things like this motivates me to keep running and raising awareness because I feel like I am actually making a difference, and I know that with our continued efforts I will live to one day see a cure for this horrible disorder. I want to be the 80 year old lady crossing a finish line!

My co-captain John and I have already started making plans for this years team, and we have set a goal of raising $10,000! It is a lofty goal that I know we will reach. We're kicking off our efforts with a fundraiser party on July 23rd! Check out the flyer and contact me for tickets, come out and support a good cause while having a fabulous time!

An Amazing Friend & Teammate

2011-05-17T12:09:00.000-07:00

Oftentimes when discussing NF I tell people that as challenging as it can be, if it weren't for NF I would have missed out on meeting some of the most awesome people I know. My friend Sarah Johnson is one of them! We met a few years ago when she first started running for the team in Long Beach, and over time she has inspired me with her amazing attitude.

Sarah has NF1, which is different from NF2. She does not have tumors on her hearing nerves like people with NF2, but NF1 can still cause tumors on any nerve ending as well as learning disorders. Having Sarah at our events each year is always uplifting, I have never seen that girl without a smile on her face and her enthusiasm is infectious.

Earlier this year I got a panicked email, Sarah was at work when she passed out cold. After being rushed to the hospital they found a large tumor on her brainstem! This was a complete shock to her, and a serious medical emergency. She was admitted right away and within a week she was having major brain surgery for the first time in her life. As soon as she was able to communicate again she was sending messages through her family to let us all know she did fabulously, thank God.

Now after having major brain surgery you would think Sarah would need months of time to recover before even thinking of running again, but within a month she was jogging and trying to get her strength back! She was actually upset that she wasn't as fast as she had been before surgery and frustrated by the speed of her recovery. I think most people would have gotten in bed and pulled the covers up over their heads, but not Sarah, she just kept pushing and training and recently she announced she will be running with us in Long Beach this year!

I am excited to see my friend, and proud of her for how far she has come in her journey. No matter what her finish time she will win because we all have to run our own race, and Sarah shows me that every day!

Check out Sarah's fundraising page and read her story:

http://www.active.com/donate/nflongbeach2011/SarahLB131

Understanding

2011-05-14T15:03:00.001-07:00

I am tired of being quiet.

I am tired of holding my applause.

I am tired of only singing in my head.

I am tired of politely smiling, while people carelessly ignore me.

I am tired of biting my tongue and,

I am tired of stifling my spirit.

I am loud, I am chatty, I am opinionated and I like myself.

Don't shush me, don't give me that look, don't sigh at me and don't condescend me motherf*cker.

***

I used to laugh really loudly and yell across rooms, now people always have to ask me to speak up because my voice has hidden itself away, afraid to be chastised for its' gregariousness.

When I witness an amazing feat my hands reach for each other and pause in mid air as I glance nervously around me to be sure I am not the lone clapper in a sea of assholes.

Jokes fly over my head when explained to my curious eyes only after the laughter has already completely died.

Everybody sings a song I know but cannot voice for fear of those looks, those "empathetic" tight-lipped head-cocked knowing smiles kind of looks.

Nobody's fault, not yours, and not mine.

Not a misunderstanding, not yours and not mine.

I understand perfectly.

***

An Inspirational Teammate

2011-05-11T12:29:00.000-07:00

I am so proud of Christy Vazquez! She is our first Long Beach NFE team member to get her fundraising started for 2011. Her long time boyfriend Gabe Rios has NF2, he has lost several family members to the disorder, most recently his sister Jessica who was only 28 years young. Christy's dedication to Gabe and his family is remarkable. Last year she shaved her head in solidarity with Jessica and motivated many of Gabe's family members to come cheer as she ran a full marathon for CTF in Long Beach! This year she is back, and once again running the full marathon with the goal of raising $2610 in support of NF research. She has dedicated this run to Jessica's memory, and I know she will make us all proud.

Christy has another reason to run strong, very recently Gabe proposed to Christy and she accepted! Everyone who knows them said the same thing, "FINALLY!"

You can check out Christy's fundraising page and make a donation here: http://www.active.com/donate/nflongbeach2011/teamrios

We interrupt your regularly scheduled blogging...

2011-04-29T09:13:00.001-07:00

My momentum has been cruising forward all week. I joined LA Fitness on Tuesday and ran a treadmill 5K in 23:53 the same morning. That night I came back with Valerie and we did Pilates, that class is no joke! Wednesday I went in with Sheila and then Thursday I ran 4 miles before sitting down for a personal fitness assessment. Apparently I need to drop fat and gain muscle if I want to hit my goals, so now I get to learn the correct way to do so. I've been on a fitness high all week, faithfully chugging my protein shakes, eating my fresh produce, and shunning all animal products possible. You may ask if I have a point... I do... I am proud of myself! Just this Monday I teetered on the edge of a downward spiral, but by sheer determination I turned it around, go me!

That is all. Carry on.

No More Hello Kitty Blankets

2011-04-26T13:16:00.001-07:00

One day can make all the difference if you give it no other choice. This morning I felt Mica crawl into bed with me, and wrap her tiny arm around my waist. Before I even opened my eyes I knew today would be a good day. The sun would be out, I would feel better, and I was going to the gym come hell or high water. I opened my eyes to find both JT and Mica right in my face, waiting for Mommy-Bot to get up and serve them. Instead I grabbed them and distributed a million kisses evenly among them both before popping out of bed and stretching. I adjusted my neck and felt the stiffness settle in, and when JT asked what was for breakfast my stomach growled warningly at me, but still I kept moving. I made the bed, got dressed, and hustled the kids. All the while the pain in my neck (brain stem!) began to warm up, but instead of giving in to it, I ignored it. Everything in the fridge triggered my nausea, so I just grabbed a protein shake and started chugging. After I deposited my ducklings at school I headed up to LA Fitness for the first time. My Bally's contract just ended and I was in the market for a new gym. An hour later I had signed up and was pounding away on a treadmill, hitting stop just as I reached 3.1 miles in 23:53. I sucked in air and my stomach lurched menacingly, but I just kept moving, down the stairs to the mats, and stretched deeply. When I left the sun was shining, a breeze was blowing, and I was right on time to grab Mica from class and get a huge kiss. Afraid to lose my momentum, I came straight home and mopped, cleaned the kitchen, and fed Mica, finally settling down right here and getting work done online. The pain is with me but I renounce it, taking away its power, and ignoring its pleading calls to lay on the couch with my Hello Kitty blanket. I have no time for Hello Kitty blankets, I have a life to live, and what a difference a day, and an attitude, can make.

Spring Cleaning

2011-04-25T13:20:00.000-07:00

Earlier this month Paul and I packed our bags, left our kids and dogs in other people's care, and booked a hotel room in Palo Alto so I could go through 3 days of Cyberknife treatments on 3 tumors in my thoracic spine. They looked like 2 on the first scans, but turned out to be 3, all facing each other with my spine in the middle. They had only grown slightly since making an appearance a couple of years ago, but that growth has been steady and measurable, so with Dr. Adler's help I got set up with his team at Stanford and had these suckers zapped. You may remember just last month I had 3 small and 1 long brain tumor all treated with Gamma Knife in Newport Beach, so after this treatment my grand total for Spring Cleaning would be 6 tumors in 2 months. Seriously? All of the treatments were outpatient, and Cyberknife specifically was very easy to go through. I called my treatments my "Radiation Naps." Paul and I even ran the Golden Gate bridge one afternoon after leaving the Cancer Center, and I only had about 3 days of nausea to remind me that anything had happened at all.

Now I am home, and it has been a few weeks. Paul is back to work, I am training for a 5K and the kids are ready for the end of the school year. My hair started falling out last month but as of now seems stable, however my scalp itself has a weird burn over it. It just hurts, and I can't pull my hair up or back, so I have given in and started sporting a loose soccer Mom ponytail. Every time I glance in the mirror I look sloppy, thrown together, and I am reminded of the truth I so studiously avoid, that the inside of my body doesn't look the way it is supposed to. That I am growing things from the inside out, and there is no cure, and if they keep growing they will slowly take over my brain and spine, and if I am lucky I'll have a sudden aneurysm or just go to sleep and never wake up, but most likely I can look forward to several years of being in a nursing home before I go. I get all of that from a sloppy ponytail. What can I say, its a gift.

Now over this weekend the nausea has come back, and I was hoping to loose a few inches of belly fat from it, but of course I am still hungry as always. My pot belly demands carbs even in the face of nausea. The nausea itself doesn't concern me, but then my brain stem started hurting. (You know you have NF2 when you say brain stem instead of neck.) Then my feet started cramping under again, and my head started ringing... louder than it always does. I whined to Paul that everything hurts, and he nodded sympathetically and went back to watching Smallville on tivo. I wondered aloud if MoFo could be swelling, or if maybe it was just the lack of sleep and abundance of junk food I had stolen from the kids' Easter baskets. Paul shrugged noncommittally, but he did gently rub my neck (brain stem!) until I relaxed.

I woke up slowly, and immediately realized the pain and nausea stuck it out through the night, and "I no feel good" as Mica would say. So I am most likely dealing with a bit of post-rad swelling, which could be a good thing because it means the treated area is reacting. I like to picture the tumor screaming a little as it visibly withers and dies. I'm wandering around half-heartedly cleaning my condo and spending too much time online playing Bejeweled, I can't face the world right now, it irritates me too much. I just can't with some people, I watch them and imagine what it would be like to have a normal life to take for granted and throw away as people seem intent on doing. To expect to live another 30 years (at least) and be able to hear and meet people and listen to music, and ride a bike without falling over, and wear a tank top without people asking what the hell is wrong with my back, and not wonder if a picture I just took will be put up at my funeral. What is it like to just live a typical life? To be asked how I'm doing and answer "Great!" without a hint of irony, to go an entire week without saying tumor, to spend a vacation somewhere other then the hospital, to cough without wondering if a tumor is causing it?

The fact is that this is my life, this is what I get, and I am doing the best I can with it. I fight, I run, I push, I write, and sometimes I yell and I cry. I am human and I am flawed. I'm not always a role model, but at my worst I hope to at least inspire people to question their perception of reality, and to remind people that life is complicated, but life is beautiful. We require pain to appreciate joy, and I may struggle but I am alive, loved, safe and blessed to know how amazing that is in a world like ours. The nausea will fade, but I never will.

From Cupcakes to Bikinis

2011-04-03T19:48:00.000-07:00

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!

2011-03-28T13:35:00.001-07:00

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.

Hair today, gone tomorrow?

2011-03-22T09:51:00.001-07:00

A month ago I sat with Dr. Kim at my Gamma Knife consultation with a list of questions. I don't remember any of them now, but I survived so I am pretty sure none of them mattered. I do remember very clearly Dr. Kim saying something, and looking over to Paul as he made a face at Dr. Kim. He shook his head as if to ask why he would say such a thing, and with an odd grin that only people who have sat through oncology appointments could really understand he relayed that I could possibly lose a large patch of hair. I remember my Mom losing chunks of her gorgeous hair after Gamma Knife. The parade of hair products that came along shortly after. Within a year she had given in and cut it all off. In time the bald spots grew fine baby hair, but her full head of hair never recovered. I thought it had something to do with some archaic version of Gamma Knife, but apparently the issue is related to how close to the skull a tumor is, as well as how large the area to be radiated may be. Dr. Kim was telling me that I could possibly lose my hair over the areas to be treated, which happened to be directly on top of my head spanning most of my crown and a large area of the front top. Really? Paul suggested a reverse mohawk, and I slapped his arm, Dr. Kim chuckled and shook our hands as he took his leave.

The following day I had Gamma Knife, and other then the pain it was mostly unremarkable to me. I remember feeling trapped inside my head, but I tend to feel like that a lot since I lost my hearing. The next few days my scalp burned, I had always dealt with the deep pain from the head pins, but this was the first time my scalp reacted. I stood in front of my bathroom mirror staring at my hairline, combing delicately near the treated areas and searching for signs of change. I always lose a lot of hair in the shower, so before washing my hair I reminded myself of that and purposefully ignored the thick strands laced around my fingers as I ran my hands through my hair's length. I towel dried gently and laid off the teasing. Everyday I tried to not look as closely, tried to ignore the continuous burning along my scalp. Finally, this past weekend I parted my bangs to french braid them to the side and as I pinned the braid into place a large white spot of skull stared at me from the area I had parted. I thought I had braided too tightly and quickly undid the braid, loosely redoing it and scruffing up the surrounding hair near the patch. When my hair was completely done I noticed a nickel size spot of hair missing on the other side as well. I ignored it, put on my lipstick, and enjoyed my evening.

Last night I finally let my hair completely down after a lazy day of purposeful avoidance. Most of my hair is the same as it has been since I had babies, very straight and flat with no volume. But now the front is just sparse, when I part my bangs any which way the line between the chunks of hair is just thick and glaring. The remaining hair doesn't seem rooted, each strand stands alone and weakly clings to my damaged scalp. There are 3 tiny, almost dime-size, patches missing. One above each temple, and one in the very front smack in the middle of my forehead. They are not noticeable unless I pull my hair to either side, yet. I don't know what tomorrow will bring but I have to hope for the best and prepare for the worst.

The way I see it I have 2 options. The first is to be incredibly dramatic and go all Rosemary's Baby

on my hair. Part of me is excited by the aspect of such a radical change, a larger part of me hated having short hair and remembers how easy it is to chop it off and how difficult it is to grow it back. Option two is to baby my hair, apply hair regrowth serum, and wear it up a lot until it

starts to fill back in. If any more does fall out then option 1 would really become more of a necessity because regardless of what Paul thinks I am not ready to rock a reverse mohawk.

By the way, I think it is absolutely infuriating that the hair has to fall out right on top because

if my sides were falling out I would already be rocking my new hawk...

Escape

2011-03-21T11:11:00.001-07:00

I'm surrounded by people and uncomfortable in a pair of heels I can't really balance in anymore. I try not to lean on Paul too much and comment to someone near us about something random, drawing them into a conversation. They say something, I tell them I am deaf and try to read their lips, but generally they look to Paul and he then explains to me what they said. My smile tends to be unharnessed and my mouth moves a slight beat quicker then my thoughts, so I enthusiastically reply and notice the person has a slightly confused look on their face. I remember to draw my volume from my stomach and not my throat and try to speak clearly, but they smile at me wanly and glance at Paul, waiting for his explanation. He tells them what I am trying to say and then we all stand awkwardly for a moment before they smile and escape.

We stand looking at yet another painting, and the man next to Paul comments to him. The two strike up a conversation and I try not to look as though I want to know what they are saying. I busy myself looking intently at a speck of dust and when I furtively glance at Paul he immediately tries to explain what they were discussing. I don't really understand what he is saying and as Paul tries to fingerspell it and put a 5 minute conversation into a 5 second nutshell his newfound friend excuses himself and escapes.

At some point Paul has to excuse himself to the men's room and I busy myself with my phone, I have no job and my few good friends know where I am so I fiddle around on facebook when I realize someone is standing near me and apparently talking. I look up with a smile and apologize for ignoring them, and explain I am deaf and didn't realize they were talking. They smile awkwardly and apologize for bothering me. I tell them they weren't bothering me at all and please to go ahead with what they were trying to say. They wave their hand dismissively, smile pityingly, and escape.

Paul comes back with a warm smile and his strong arms quickly wrap around my waist as his lips brush my neck and for just a moment I relax. Right then a girl in a fabulous dress appears right next to us, and I insist Paul asks where she found it. He tells her his wife is deaf but would like to know where she found her dress. The girl pauses for a moment to understand and then with a preschool teacher smile turns to me and tells me where she bought it, and then how beautiful I am. She then flashes Paul a sympathetic smile and escapes.

We walk around amusing ourselves, noting the conversations flowing around us, and both admit to being a bit tired at the same time. We escape...

St. Patrick's Day Goes On...

2011-03-17T13:11:00.001-07:00

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!

2011-03-04T18:47:00.001-08:00

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!

2011-03-01T12:38:00.001-08:00

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!

Experiencing Gamma Knife

2011-02-20T12:02:00.000-08:00

It has been a week since I had Gamma Knife at Hoag Hospital for the 5th time on the 8th, 9th, and 10th brain tumors to be treated. You probably assume I have yet to post because I was on my couch recuperating, but you my friend would be incorrect. I have been out running, doing pilates, shopping and playing with my kids!

Last Friday Paul and I made the drive down to Newport Beach at the crack of dawn. I was greeted by the nurses who know me all too well by now and led to my room. At Hoag Hospital Gamma Knife is performed in a separate building called the Advanced Technology Center. The halo placement, MRI's, and treatment are all done in one small building. It is comforting to be kept so close to my husband throughout the entire ordeal, without even having to take a trip to the huge, cold, main hospital.

Being an old hat at this entire thing I came prepared with no jewelry or metal on, and just changed out my sweatshirt for a scrub top to wear over my comfy sweats and monkey slippers. Within an hour the nurse had all my vitals taken and expertly placed an IV, and then suddenly the room was filled with people ready to get started. I felt the familiar panic rise in my throat at the thought of being put to sleep and having a frame hand drilled into my skull within the next 10 minutes. Before I was even directed to count I closed my eyes and directed my consciousness deep within me to a place only I can visit. A vast beach stretched before me, blue waves crashed down on powdery white sand warm from a light that just seemed to emanate from the horizon. The water barely lapped at my toes and the warmth seemed to seep into my pores, filling me with light until suddenly I felt a hot hand on my arm. I took a breath and opened my eyes to see everything framed by the halo around my head. Paul was at my side, as always, and I told him I felt like Magneto.

Slowly I came back to my surroundings and the heaviness of the frame set in. My head ached but I knew there was nothing to be done about it so I just tried to relax. I waited about an hour to be taken back for Gamma Knife, and the doctors told me I would be in the machine for 80 minutes. Again, the panic rose like bile in my throat as the doctors circled around me making adjustments, finally snapping on another piece of the halo that rocked my skull with several deep thunks. (thunk is a word now, screw you spell check.) They guided me onto the bed that lays in front of the Gamma Knife machine and laid me back until my head frame snapped into place. I took a deep breath and gave the worried doctors a reassuring smile. They knew that once the machine pulled me inside of it I would be deaf, blind and unable to move at all for the next 80 minutes, with not even a clock in sight to provide structure to the pain. I knew if I allowed the fear to set in I would cry, but there would be no escape and so instead I resigned myself to prayer.

The bed slid back into the dome of the machine and pulled my head at an odd angle until I was basically hanging by the screws and surrounded by darkness. I thanked the Goddess for the technology available, for the doctors I am blessed to be treated by, for my family who was supporting me, for my children who were waiting for me. I thanked Goddess for everything I could think of until I could not ignore the pain any longer and finally my eyes flew open to see nothing by layers of metal, and beyond only darkness. Had it been 15 minutes or 30? Was I almost done or had they even started? What if there was an earthquake and the machine ripped my skull apart? I had to stop, I knew sleep would allude me and instead brought my mind back to my beach. Within moments I walked along its sandy shore, stretching unendingly to a place I could never reach. Wisps of clouds in every color swirled far out over the water and I inhaled the crisp air wondering how long I could stay. I was not asleep, I simply chose to exist on my beach and not in that machine. I could feel the pain but I chose not to experience it. I was still afraid and worked actively to subdue my panic, knowing that just one rogue wave could crash my entire beach, drowning me in an unnecessary tsunami of fear.

Suddenly the horizon shifted and I realized I was moving, my eyes opened and the doctors surrounded me, releasing the halo from the Gamma Knife and offering a hand to help me sit up. I followed a nurse back to my room in a daze. I saw Paul and my Dad waiting with a casual ease that comes only from having NF2 in your family for the last 40 years. It wasn't like I had actual brain surgery, this was nothing to us. I tried to muster smiles for their teasing but really just wanted to have the halo taken off as quickly as possible. Time ticked by and I kept lapsing out of consciousness while wide awake. My mind was trying to escape my head. The nurses came in with empathetic hand squeezes and produced a power drill and rolls of gauze. Everyone helped me sit straight up and as the drill settled into the first screw my mind flew free and settled somewhere deep inside of me, where not even a beach of light could exist. There was only darkness and a keen awareness of a detached reality surrounding me. Warm blood trickled down my skull and as the 4th screw was removed the halo was lifted and gauze was quickly wrapped around my head. I opened my eyes and saw my Dad and Paul looking at me with bemused smiles. My Dad gave me hugs and left to go about his day. Paul went back to playing on his phone as we waited to be released. I laid back and pulled the scratchy hospital blanket up to my chin. I felt like the halo was still on, like I had never had it on, like I was still at my first Gamma Knife treatment, and already at my next. I felt like I could live another 10 years and felt like I was already dying, and already gone.

Before leaving we had a final conversation with Dr. Duma who told us he treated all 3 tumors involved in the cluster of tumors we were targeting. There was also a large tumor at the top of my skull between the hemispheres of my brain stretching straight back that was treated as much as possible. With all of the radiation so close to the surface of my skull I was warned I may lose hair. I remember my Mom's bald spots and just nodded in understanding. I smiled like I always do and we left. I could see Newport Beach as we drove out of the hospital parking lot but I turned away from it, it was time to head home.

I woke up the next morning expecting pain, and finding none. My head was sore like I had drank too much cheap wine, but within 2 days I was able to run a 26mn 5K on the treadmill. I just keep moving forward and forcing my body to follow along for the ride. I've had a few headaches, and every morning I comb through my hair checking for bald spots that have yet to form, but most of the time I just do what is expected of me, because there is nothing else to be done.

Bring It On

2011-02-07T10:21:00.000-08:00

This past weekend was the annual Surf City Marathon in beautiful Huntington Beach, and as most of you know I had been training for 2 months to break 2 hours in the half-marathon. Over the last couple of weeks I had several set backs, all tumor related and absolutely annoying. A spine tumor made it difficult for me to breath, and when I ran at the speed necessary to reach my goal time my ribs would cramp under painfully until I was forced to stumble to a stop on the side of the road, clutching my side and sucking in air. I realized breaking 2 hours may not be possible right now, but I had to at least do my best. Surf City is not an official NF Endurance Team event, but several of my friends on the team have formed the unofficial NFET California Dreamin' Team and that was all of the motivation I needed to put on my running shoes and paint that course yellow!

Paul and I left the kids with a friend and showed up in Huntington Beach for the expo Saturday. We met up with friends, grabbed our bibs and timing chips, and escaped for a margarita at Fred's Cantina. Later that night my friend John was awesome enough to host a dinner at his home, 8 of us crowded around his table for pasta and stories. As usual our collective health statuses left much to be desired, but morale was high and the wine flowed freely. By the time we all hugged good night I couldn't wait for race morning.

Paul, John and I actually went to the Santa Ana Artwalk for a bit after dinner to visit a gallery showing the work of my friend Tyoni who does my tattoos. Totally random bit of information, but it was fun and her art is beautiful. I just wanted to rip it off the wall and transfer it to my skin. After dropping John back off at home, Paul and I crashed his friend Fred's couch and caught a bit of sleep.

Before we knew it it was 6am, and I popped right off that couch ready to attack the course! I yanked on my Bad Ass running socks, comfy purple running shoes, my fave black running shorts, my Nike Sports band, my new running hat that says "Some girls chase boys, I pass them," a ton of Glide, and finally my bright yellow NF Endurance Team singlet. I cleaned up and smeared on sunblock, by 6:10 I told Paul I was ready to rock! We drove down to the parking lot and caught a shuttle right to the race. 20,000 people milled about, some stretching, others doing quick sprints to warm up. I shook my legs out and took a deep breath. Suddenly Paul noticed people moving and told me I better get running. I planted a big sloppy kiss right on his mouth, and took off running toward the start line.

Most of these major race events line everyone up in waves by declared goal finish time. I have done my time being in the back 2 or 3 waves, but not this race. As I jogged to my starting spot I passed thousands of runners crowding around pacing signs. 3:00, 2:45, 2:30... I stretched my neck and searched for the big 2:00 pacing group, but the line had already started moving and before I could get left behind I jumped in with the 2:04 pacing group. The leader was a young girl wearing a horrible blue plaid running skirt. As we crossed the start line I turned my sportsband on and set it to the chronograph. I breathed in deeply through my nose and forcefully out of my mouth and focused on the road ahead of me.

The first mile of a race is always interesting. There are always a few jerks who just refuse to stick to their wave group and walk right smack in the middle of the course, causing dangerous traffic for all of the people running at the correct pace. There are always people who go running by with the oddest running styles, one hand sticking straight out, feet dragging or even moving in circles in front of them like a cartoon character. As soon as you see them, they pass you and are gone. Surf City runs along PCH and the ocean breeze urged me on as I hit my stride. I felt a slight twitch in my ribs and went into denial mode, as I passed the 1 mile mark I noted 10 minutes had gone by already. I was 30 seconds behind my 9:30 pace, but the first mile is always a warm up so I was not concerned. As I set into a rhythm my rib cage flummoxed against my skin and I instinctively reached to hold the pain. I quickly realized that if I shoved 2 fingers right into the cramp and breathed deeply, the pain would recede until I could breathe normally again. Armed with this new tactic I picked up the pace, and every 2 or 3 minutes as the stitch came back I would roughly press it in with my fingers. Somehow I had become one of those crazy people running along with an elbow sticking out randomly. I could have cared less, as I neared the 2 mile mark a glance at my sportsband showed 19:30. I had run the second mile on pace and was feeling fabulous. I tried to relax and enjoy the scenery, forcing my mind to zone out rather then counting steps. At mile 3 the course took a sharp turn to the right as I knew it would, and until halfway through mile 5 it was all uphill. I love hills, I settled into a steady type of march and pushed onward. I thought back to the previous year when I had walked the half with my friend Giselle, I wasn't worried about my finishing time and knew it would be fun to complete the course together. I wished for a moment she was there again for the company, but knew that this year I had to run my own race. Suddenly the hill ended and I found myself at the top of a neighborhood looking out over a small inlet of water covered in a thick fog. It was beautiful, and as I turned downhill again I let myself fall forward with the incline, picking up my pace as the hill descended until I had again reached PCH and the course turned back to it's original direction. I was at mile 6 and almost at the one hour mark. I was about halfway there and starting to tire. I took my first drink of the race at the 6.5 mile hydration station, curving the little paper cup to my lips and sipping it down as it splashed all over me. I tossed the cup toward the massive pile of discarded cups and wiped my mouth with the back of my hand, all without breaking stride. I spotted the 2:04 pacing team again and fell in line with them. Every time I tried to pass them they ended up passing me again, until finally I resigned myself to their rhythm and fell in line. Its hard to describe miles 8-12 of a half marathon to anyone who has never done an endurance event. My adrenaline wore off, the caffeine ran out, and as excited as I was to run this race I was ready for it to be over. Instead of slowing down as my body wanted to, I knew I had to maintain or increase my pace for 5 or 6 more miles. At this point I started a meditative kind of thought process, urging myself forward and ignoring the pain that had settled over my entire body. Dull pain was expectable, and I welcomed it, knowing that pain is weakness leaving the body. Right around mile 10 the pain went from dull to sharp in 3 seconds flat. My left foot started to cramp and slowly curl in under itself. I tried to keep running for about 2 steps before I stumbled to the side and jammed my foot against a curb trying to force it to flatten back out from the painful ball it had hunched into. Within seconds I was loping along, trying to relax my foot and keep all of the tension in my core. I snatched the energy gel from my hydration belt... which is really the same thing as a fanny pack... I ripped the top off the package and squeezed the goo into my mouth, willing the electrolytes and potassium to relieve the cramp. I successfully ran another sub-10 minute mile and realized I was almost at the finish! At mile 12 my foot cramped horribly again, I again tried to ignore it but it curled under. I came to a halt on the curb, cursing like a sailor and shaking out my foot. I looked longingly down the course at the finish line, I couldn't make it out through all the fog but it still taunted me. I took a deep breath and just ran. I saw the pacing group and ran right past them. I couldn't even look at my time, I was too busy willing my feet to bounce off the road as hard as possible, propelling me forward against all probability. I was moving maybe around 9 minutes a mile but in my heart I was flying down that course. As the final stretch loomed into view spectators crowded the sidelines. Girls in hoola skirts waved signs that read "Nice Legs" and "You have stamina, CALL ME!" Children sat on their father's shoulders holding signs that said "RUN MOMMY RUN!" They all blurred into a line of color rushing past on either side as the big Finish Line banner came into view above my head and with a smashing step over the finish line I jammed my thumb into the stop button on my sportsband and looked down. 2:06. I sucked in air and accepted a medal and banana from volunteers. I stopped for the first time in over 2 hours and stretched deeply. For some reason I thought of the movie Bring It On. A National Championship team of cheerleaders goes back to defend their title, but a better team wins and after all of their hard work they earn 2nd place. As they accept their trophy they look at each other and say "Second place?" and with a smile they erupt in cheers and scream BRING IT ON! Bring it on, indeed.

I fought my way out of the finisher's holding pen and found Paul, I gave him a big sweaty hug and just pointed toward the beach. I ripped off my running shoes and hobbled barefoot toward the ocean. I walked right in and let the ice cold water numb my swollen feet before realizing just how cold it was and rushing back out. I ran back to give Paul a kiss then ran toward the surf again, this time letting the water reach above my knees and rush all around me. I took in the horizon and slowly withdrew from the waves. I stretched on the beach, not caring that wet sand stuck allover my skin. I went through my entire yoga routine right there, on the sand, with the water snaking up to my fingers as it reached out for me.

Finally I got cleaned up, and we found our way back to the team. We waited for everyone to finish and then said our good-byes. As always, when it comes down to the important moments in my life only Paul was left. We held hands tightly and headed for the shuttle. No matter how far I run, I always end up back at home.

Meal Planning

2011-02-02T16:18:00.001-08:00

I am going to start sharing our weekly dinner meal plan so you guys can get an idea of what the heck we eat to keep 4 different people happy in my household. Paul eats freaking everything, but is happy as long as he is full and has meat a couple of times a week. I don't eat meat or milk products in any form, but I love the heck out of egg whites! JT is not allowed to have dairy or processed foods. Mica loves milk, but has started rejecting meat and I limit her processed foods as well. With a little planning and research I keep us all fed and satisfied for less than $100 a week on groceries! I usually make a bunch of stuff, and grab other random things from the fridge, and then put everything on the table with serving spoons buffet-style. Everyone just eats what they want. So this is what is on my table this week:

Monday: Morningstar Farms Vegan Riblets for Mommy & Mica, prepared fried chicken from Albertsons for Paul & JT, potato wedges, sauted kale & breadsticks.

Tuesday: Leftover chicken for Paul & JT, Amy's brand curried lentil soup, vegan potato salad (just use vegenaise instead of mayo, TADA,) steamed broccoli, & rolls.

Wednesday: Awesome Brown Rice, Soyrizo Fajita Mix, fried plantains, burrito fixings (whole wheat tortillas, shredded vegan cheese, salsa, guacamole, shredded lettuce,) soy & flaxseed chips

Thursday: Sloppy Janes (made with tempeh, bell pepper, onion, garlic & tomato sauce) served on sandwich thins & sauted kale.

Friday: Pizza Night! We have pizza every Friday, I order a Vegan Berkeley from Z Pizza & then a regular pizza from wherever. Sometimes I just make my own with homemade whole wheat dough, some ragu, caramelized onion, vegan cheese, jalapeno and pineapple YUM.

WEEKEND: This weekend I'll be running Surf City with some friends from the NF Endurance Team, so that's it for this week. See, that was easy!

Recipes:

Awesome Brown Rice: Saute onion & garlic, add 1 -2 cups of rice and brown, add cumin, seasoning salt & black pepper, 1/2 can diced tomato & chilis, enough green tea to just cover rice. Cover and simmer til all liquid is absorbed, about 45mn. Top with ground almonds and bake til almonds brown.

Soyrizo Fajita Mix: Saute onion & garlic, add 1 or 2 chopped bell peppers, 1 pkg of soyrizo & a can of black beans.

Whiner

2011-01-28T14:30:00.001-08:00

Sometimes my body fails me, no matter how hard my mind pushes. Every run since my last has been consistently worse. I finally realized something is going on with my health, and have come to blame the thoracic chickens. I can feel them pressing into my spine, stunting my breathing and pushing my posture off even more than usual. On Wednesday I left my house with the intent of running 10 miles, and at mile 1 I was hobbling along gasping for air as my sides cramped in around me. 2 weeks ago I ran 10 miles in 94 minutes and was disappointed with that time, now I would kill to be able to run like that at Surf City. I am doing the usual, I took a day to rest, did some yoga, emailed my neurologist and called my GP. BLAH BLAH BLAH. My neurologist wants me to have an EKG and chest x-ray to rule out simple causes for my shortness of breath and cramping. I would agree, except that we already know I have 2 large growing tumors right there on my spine in the exact place that would cause this. Just prescribe me some steroids, let me deal with the 'roid rage, schedule me for Cyber Knife, and lets get this over with!

I am tired of my life being interrupted. Every time I convince myself I am normal I get a slap in the face from another tumor, taunting me with a list of things I wish I could do. I wish I could sit and talk to Mica, and teach her to read. I wish I could hear JT play guitar. I wish I could hear Paul tell me he loves me. I wish I could hang out in a group and get all the inside jokes. I wish I could walk without people thinking I'm drunk. I wish I could sit through Taekwondo without feeling like I'm on fire and having my legs fall asleep. I wish I could run forever and leave the pain behind me. I wish I could picture myself getting old with Paul. I wish I could snap out of this funk and stop being such a whiner, whining is really unattractive.

So there it is, and here I am. I can choose to wallow, or choose to leave it here in writing and let it go. Well I choose to wallow! No, I'm kidding, the day I lose my ability to look at the bright side is that day I know I have nothing left. Instead, I choose to let it go and do my best for the rest of the day. I choose to just keep pushing back, to stop wishing and start accepting, to live each day remembering that it is a gift in itself, to find joy in the smallest moments and sleep deeply knowing I am loved by my family, friends and Goddess. Whether I am complaining or smiling, the pain is still there. I may as well be in pain with a huge smile on my face.

Race Standards

2011-01-18T14:54:00.001-08:00

Surf City is just 2 weeks away, and I find myself measuring everything by race standards. Two weeks is really 2 more long distance runs. Food is seen as fuel and water as hydration. Everyone I hang out with drinks beer and I politely decline each offer, even when I rest my mind's eye is focused on my goal.

The first time I ran a half marathon I finished in I believe 2:35. I was happy with that time, because your first race is always a PR! After a few more mediocre attempts and a year of sluggish training runs I logged a 2:18 at San Francisco. I will never forget the feeling of running across the Golden Gate bridge and realizing I was flying. The hills of San Francisco fought hard, but that day I won. I have steadily improved since then, taking time off as necessary for life, but last month when I ran in Las Vegas and clocked 2:05 I knew a sub-2 hour half was within my reach.

Last week I finished my 10 mile training run in 94 minutes, just 4 minutes shy of the pace I would need to sustain to reach my goal. When I set out this morning for another 10 miler I had only one goal in mind, to improve on last week's time. I knew I may not hit 90mn exactly, but as long as there was forward momentum I would be satisfied. I started out strong, clipping miles at exactly 9:00 and 18:00, but by mile 3 my old friend Side Stitch decided to tag along for the ride. I tried to fix my posture, my breathing, my form... but every time I sped up to the necessary 9mn per mile pace my side cramped until I was forced to slow down and wait for it to subside. At mile 3 my stopwatch was already past the 30mn mark, and I knew I was in for a long 10 miles. I always chant to myself as I run. Usually I say "Pain is weakness leaving the body," or if someone passes me I say "Run your own race." By mile 7 I was telling myself "Just do your best," and praying I would at least be able to hit a 10mn per mile pace. On the shaded parts of the trail I would begin to perk up, but that mid morning hot sun was stalking me and I found myself dragging across a blistering half mile stretch of heat. I finally reached the end of the run in 1:45 and trudged back to my van unsure of if I was capable of breaking 2 hours at Surf City in just 2 short weeks.

I wonder why I even do this to myself? The last 4 miles of that run were incredibly miserable, and my back is in a series of knots and pain that are only going to stiffen by morning. I could stop, quit, give up and give in. How different would life really be? Then I remember that feeling on the Golden Gate bridge, I remember looking at my watch in Vegas and realizing I had clipped my PR by 13 minutes, I remember when I "ran" the full marathon in Las Vegas and saw all of my family screaming for me at the finish, and my kids running on their little legs with huge smiles, ready to cross the finish line with me. I remember all the friends I have made on the NF Endurance Team, the pasta dinners, the expos, the photos and the medals. I remember every race morning, the anticipation while the Star Spangled Banner played, barefoot men covering their hearts next to war vets running in camo and soccer Moms in tutus. All of the amazing people I have seen on the course, people getting married while running in Las Vegas, an 80 year old man passing me in Long Beach, the Pacific ocean in Surf City. I remember every finish line, how it seemed so unattainable, but the harder I worked the closer it got. All of those final stretches, no matter how tired I was or how long I had been limping, at every race I reached down deep into my gut and ran like I stole something for a big finish. At every finish there was a smile on my face so big my cheeks hurt because no matter how many thousands of people had crossed over before me, I had won my own race. I had done my best and never given up.

I never will give up, I'll run until I can't run anymore, and nobody can stop me. Not a cramp, not a stop watch, not the heat, and not the back pain. For all of my chanting there is only one that really matters, "Never Give Up."

Power Puff Girls & Chickens...

2011-01-07T13:06:00.001-08:00

This might be a bit lengthy, so grab a snack and get comfortable...

After having MRI's at NIH in December I sat with Dr. Asthagiri (the doctor in charge of the study)and went over my scans. His impression was that I am stable, and if you are a regular reader of this blog you already know how I feel about that. All of my tumors are growing slowly, but surely. Mofo, the brain stem tumor which I had treated with Gamma Knife last year, has supposedly not shrunken but stopped growing, which is great news in itself. Dr. Asthagiri is a wonderful doctor, but like any other profession there will always be differences of opinion. When dealing with NF2 it does not seem like anyone has the right answer, each of the doctors just do their best to prolong our lives with as little pain as possible. My regular neurologist is Dr. Duma, and I adore him. He has been my doctor since 2003, and before that he was my Mom's doctor. He saved her life at one point, and I will never forget that. Dr. Duma is the one who has helped me to form my long term care plan for NF2. We radiate any tumor that has the nerve to threaten me as soon as we are sure it is growing steadily. This differs from how most doctors treat NF2. The usual rule of thumb is to treat a tumor only when it is symptomatic. The problem that I have with that is once the tumor is symptomatic and you remove it, you do not necessarily recover everything you have lost. Most likely, it improves a bit, but you are forever altered, another chunk of your ability stolen by NF2. Over time those chunks become gaps, until you have nothing left to give. It seems to me that if you have measured growth of a tumor over several MRIs, then you know it is growing and may as well treat it while it is small and less dangerous. At this point another debate comes into play. Many doctors do not think people with NF2 should use radiation to treat their tumors. They say it does not always work, which is true. What they rarely mention is that surgically removed tumors can grow back just as easily as a radiated tumor can, and surgery has much higher immediate risks. The other issue is that by radiating the tumor it can become cancerous over time. In a healthy person with a random tumor that is a significant reason to have surgery rather than radiation. I personally feel it makes more sense for a person with NF2 to focus on immediate benefits and consequences, rather then delayed possibilities. Radiation is an outpatient procedure, and when used by the right doctors on the right tumors it can be highly successful. I have had 6 brain tumors and 1 spine tumor radiated, all stopped growing, and most shrunk within 6 months. Dr. Asthagiri explains this by saying every person with NF2 has their own tumor biology, and mine seems to be very susceptible to the radiation. He admits I have been very lucky. (really!?) This is not the case for all NF2 patients, unfortunately. However, I have to make my decisions based on my own history, which of course includes having watched my Mom have surgery after surgery, each one taking more than it gave. Every person in my family with NF2 has gone the surgical route, and every one ended up paralyzed, Deaf, blind, and dead before the age of 40. It seems to me that I at least have to try something different. It does not make any sense at all to follow the same path that has ended so badly before. So, against the advice of most doctors, I keep a sharp eye on every tumor and if it grows consistently I have it radiated while it is small. This method is at best going to extend my chances by a few years, and keep me running as long as possible. What we really need is a medication that targets the tumor's growth and stops them from growing or even forming. Otherwise the tumors will just play a game of Tetris in my head, building up slowly until there is not any room left.

In the meantime... after going over my MRI's with Dr. Duma yesterday we located 2 areas with tumors that are definitely growing and should be addressed now before they are too big to be radiated and would require surgical intervention. I am not having surgery, it is just not happening people.

In case you don't see the 3 headed blob floating in my head I made it easy to find. Several names have been tossed around for this 3 headed atrocity, but Cerebrus sounded too scary. The entire point of naming the little f*ckers (excuse my language Nana) is to make them less threatening. So meet the Power Puff Girls. They are going down. On previous MRIs these were 3 separate tumors, but with time they have grown and joined forces against me. I'll have gamma knife on 2 of them in February, but the area is too large to treat all at once, so I will have to have the 3rd radiated later on. Gamma Knife is amazing, and I am blessed to have it and avoid letting these things continue to grow or having a major brain surgery (although I totally need an excuse for a mohawk.) Gamma Knife hurts, they bolt a frame to your head. I am not looking forward to that, but it is only for a few hours and I will survive.

These are the Thoracic Chickens. When JT was just a baby I had a major spine surgery, Dr. Duma went in and removed every tumor in my entire thoracic spine. He couldn't even count them. Afterward my spine was as clean as I have seen it since I was a teenager. Now these f*ckers (sorry Nana) have the nerve to grow in on my nice clean spine. So every time I see them I think "Ain't no one here but us chickens." I added a chicken for extra emphasis on this point. Very scientifical. Anyway... these 2 tumors are actually working together to create a potentially awful situation. I will have them treated with Cyberknife sometime in February as well. Cyberknife does not hurt, it is the post swelling that worries me, but I will expect the best and prepare for the worst.

I was also momentarily diagnosed with a lung tumor, which on further investigation seems to be my heart, which is for some reason very large. Seriously. I then came home and opened my scans myself, and (mis)diagnosed my bladder as a huge pelvic tumor. At that point I just started laughing.

What else can you do?

Prepared

2011-01-05T11:13:00.000-08:00

There are four weeks left until I hit the half-marathon at Surf City for the 3rd year in a row! The NF Endurance Team does not participate in this event officially, but we will still have several mavericks running strong in their yellow singlets, including me of course! I have spent the last 2 weeks lounging with my kids, eating with my family, and running 5K distances on the treadmill. After finishing the Las Vegas half marathon in 2:05 in early December I assumed this all would be adequate to keep my fitness level strong enough to hit the ground running this week in preparation for Surf City.

I set out this morning on a 10 miler with a goal of finishing in exactly 1:30 at a 9mn a mile pace. I stepped outside the door and the cold air smacked me right in the face. I shrugged it off, assuming that I would warm up as I acclimated but by the time I dropped both kids off at their respective schools the chill had settled deep into my bones. There was no friggin' way I was going to run 10 miles with my breath frozen in my lungs! I headed straight for the gym, resigned to my fate of slogging out a tedious 10 miles on the dreaded treadmill. I cheered up when I realized I would be able to manage my pace more efficiently and even had lofty ideas of running an entire 13.1 miles as I watched Regis and Kelly on the big screen. I calculated in my head that if I want to run 13.1 miles in 2 hours, I need to run 6.55 miles in 1 hour, and cranked the treadmill up to a 6.6 mph pace. By the end of the first mile I was sweating, and at the end of the second I was already focusing on breathing correctly instead of hyperventilating. I took a water break at 30 minutes and accepted that I would have to scale back if I did not want to risk an injury. I ran another 30 minute increment, varying the pace in an attempt to squeeze in a bit more distance, and finally finished in exactly 1 hour at the 6.55 mark. I gasped for air and almost lost the bit of pineapple bread I had eaten just 90 minutes earlier. That seemed like a lifetime away as I held onto the bar of the machine and waited for my head to stop swimming. I finally cooled down, then trotted upstairs for some punishment. Not completing my goal mileage at race pace was a smart decision, I remember my knee injury all too well and do not want to repeat history. I still hate the fact that I fell short of a goal. I went over all of this in my mind as I went through my entire weight routine and cranked out extra leg-lifts. I did my best for today and left it all on the treadmill, all I can do is respect the distance and keep on running. If I add 15mn each week of January to the run I completed today, I still have a chance of breaking 2 hours in Surf City. No excuses, no whining, no tears.

Happy New Year (from yet another Mommy blogger)

2011-01-03T17:04:00.000-08:00

Happy New Year to any of my readers who are still left after such a long break! My last post left me feeling creatively exhausted. I took some of my most intimate feelings and just let them explode out of me. It was cathartic and terrifying at the same time. My feelings have shifted over the last few months and I have had a harder time pointing out the silver lining in every situation as I usually do. I have come to accept that the darkness is just another part of me, but never will I allow it to control my daily life. Fear is no doctrine to blindly follow, it only extends suffering that cannot be avoided in the first place. With that in mind I thought of the resolutions I set for myself at the beginning of 2010, and am happy to say I met every one!

I broke a 25mn 5k, at Long Beach with the NF Endurance Team
I broke a 2:30 1/2 marathon, by far in 2:05 while at the Las Vegas Rock N Roll Marathon
I wore a bikini over summer and felt proud to do so
I continued to avoid the consumption of animals, and decided shrimp does not count on occasion!

Now I am excited to look forward into 2011, but have a healthy dose of trepidation keeping me on my toes. While reviewing my 2010 goals what struck me most was how selfish each goal was. A resolution tends to be selfish by concept, but there is no reason that with so many goals all should be focused only on myself. With that in mind I am anxious to reach my 2011 New Years Resolutions over the coming months:

Break a 24mn 5k (I did this in 23:47 this morning, but want to translate that performance to an official race!)
Break a 2 hour 1/2 marathon (I'm looking at you Surf City!)
Get my body fat percentage to 15%
Spend more time pursuing hobbies with the kids, to be measured as at least 2 specific activities a week each or together.
A financial goal (specifics of which are "none of yo bidness")
For our Long Beach team to raise $10,000 for the Children's Tumor Foundation this year.

What are your New Year's Resolutions?

Existence

2010-12-06T10:24:00.000-08:00

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?

Issues

2010-11-18T12:34:00.001-08:00

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.

Elapsed Time

2010-11-10T14:39:00.000-08:00

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.

NF Endurance Team at Long Beach 2010!

2010-10-19T10:52:00.000-07:00

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!!

The Demise of the Tooth Fairy

2010-10-08T22:42:00.000-07:00

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 2 Weeks Until Long Beach 2010!!

2010-10-04T10:54:00.001-07:00

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 http://www.ctf.org/NF-Endurance/team-fundraising-dollars-at-work.html 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: http://www.active.com/donate/nflongbeach2010/Olivia

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.

Vegans Eat This, Not That!

2010-09-25T15:32:00.000-07:00

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!

A Very Un-Fabulous Day

2010-09-23T18:49:00.001-07:00

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!

The Rules

2010-09-22T11:07:00.001-07:00

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.

Wednesday

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!"

What do Vegans eat?

2010-09-21T14:39:00.000-07:00

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!)

Monday

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

Tuesday

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!??)

Just Keep on Swimming!

2010-08-19T15:49:00.000-07:00

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

Who We Are

2010-08-11T20:26:00.000-07:00

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.

The dead don't cry...

2010-07-30T13:09:00.001-07:00

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.

My Mom's 45th Birthday

2010-07-07T09:25:00.000-07:00

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.

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

Uncle Ed

2010-06-23T13:54:00.000-07:00

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

A Leader is a Dealer in Hope

2010-06-22T10:00:00.000-07:00

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...

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

(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!

Til Monday...

2010-06-11T15:10:00.000-07:00

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.

The Demise of Mo Fo and his Evil Twin

2010-06-08T08:25:00.001-07:00

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.

Happy Birthday Mica!

2010-06-02T13:39:00.002-07:00

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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Mo Fo the Brain Tumor

2010-05-25T16:27:00.000-07:00

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.

2nd NIH Visit

2010-05-07T08:29:00.000-07:00

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!

I'm Deaf, NOW WHAT!?

2010-04-16T15:39:00.001-07:00

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?

2010 CTF Patient Forum

2010-04-13T12:22:00.000-07:00

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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Portions

2010-04-07T15:17:00.000-07:00

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.

JT's First Run!

2010-03-29T12:45:00.000-07:00

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?

Day 3 = 3 LBS?

2010-03-17T10:49:00.000-07:00

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!

Bikini Mentality

2010-03-16T12:21:00.000-07:00

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!

Breathe

2010-02-25T19:50:00.000-08:00

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.

And so it begins...

2010-02-03T08:47:00.001-08:00

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.

Why I Run

2010-01-22T15:18:00.001-08:00

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.

Kale Hummus Bites

2010-01-15T19:34:00.000-08:00

After reading several books on factory farm conditions and exposes on the food industry I cut meat out cold foturkey one bleak December day in 2008. I am a food person, I have never been the kind of girl that orders a salad for dinner, or even lunch. I refused to sacrifice flavor and enjoyment, so the experiments began. From the good (pesto pizza!) to the bad (cold potato soup?) my kitchen has become a bit of a science lab of sorts. My newest creation is a combination of 3 simple ingredients: crackers, hummus, and kale. Enjoy!

Hummus:

in food processor combine:

3 drained cans of garbanzo beans (chick peas)

3 tablespoons minced garlic

juice of 2-3 lemons

2 tsp sea salt

1/2 cup of olive oil, or more as desired.

(Process one can of garbanzos at a time to ensure no garbanzo is left unturned, drizzling olive oil through the funnel as you go to maintain creaminess. )

Kale Chips:

Thoroughly wash and dry one big bunch of kale. A salad spinner works best, but you can also leave the kale in a strainer covered by a cutting board or plate for a few hours. Tear kale into bite sized pieces and place in bowl. Drizzle with olive oil, sprinkle liberally with parmesan, sea salt and pepper. Using hands, mix kale until all pieces are coated, shiny, and sprinkled. Transfer to 2 baking trays, spread kale out evenly in a single layer. Bake at 350 for 15 mn and remove to cool. Kale chips are delicious and addictive. My kids even gobbled them up after another hesitant stare at their insane Mommy. Kale is only $1 a bunch at the farmers market, and is one of the best food choices a person can make.

Plating:

Set out chosen crackers (I use garlic herb toppers), dollop a mound of hummus, and then place 1 crispy kale chip on top!

Simple, healthy, full of protein and cancer fighting kale! These are the types of foods I eat, and the reason I have maintained my choice for so long. I hope someone else is able to enjoy it as well!

Just keep moving...

2010-01-05T15:35:00.000-08:00

I have been allowing myself to bounce between wallowing and denial over the last month. On normal days I sleep in as much as possible and pop the anti inflammatory that masks a bit of the pain. On holidays, or any time my children start to suspect a crack in their Mommy, I suck it up and play house for them. Paul has felt the weight of the situation more than anyone, as I try to sleep at night and am restless from the cramping I toss, turn, and sigh. Paul is the one who reaches over and just strokes my back gently for a moment before falling into a deep sleep, his limp hand warm and heavy.

I finished the medication my doctor suggested, which helped when I took it, but I refuse to take narcotics daily. Instead I have allowed myself a break from anything not absolutely necessary. JT and Mica had their 2 week Winter Break, and we spent the entire time just existing together. Waking groggily late in the morning, eating as we felt like it, and looking up in surprise from the couch when Paul returned home from work. I didn't run, or even think about carbs and crunches.

At some point I knew the holiday would end, and yesterday when the alarm went off at 7:30 I was pretty sure that it had. I had the kids off to school, completed a 6 mile run, and cleaned the house all before noon! I felt invigorated and accomplished, and even though the cramping still plagued me I knew it could not control me. Only what you allow to control you will do so, and I am done being controlled by pain and fear. I have 4 weeks until my next race, the 1/2 marathon at Surf City. I can either cancel and sit in pain and depressed, or push myself and cross that finish line in pain and elated.

*Never Give Up*

Happy Holidays!

2009-12-13T22:23:00.001-08:00

Make a Smilebox photobook

So Now What??

2009-12-09T12:33:00.000-08:00

I woke up this morning in the now familiar way, my legs felt heavy and my back was throbbing like someone was punching me in my spine. I struggled to turn over, and saw Mica's hair peeking out from the comforter. I pulled her close, ignoring the tightness that seized my back as I slid her warm tiny body against mine. Finally I woke her with kisses and pulled myself out of bed, breathing deeply until the pain washed away. I left it behind me and shuffled out to start my day.

Sheila came for me right on time and she drove us quickly to my doctor's office, pausing at all the speed bumps and helping me out of her truck. After a long wait, and once again explaining what was happening to me, Dr. Hanson called Dr. Adler and they spoke. Such a simple event took me days to orchestrate.

So, yes the tumor is swelling, and I was put on oral steroids. I cringed but then remembered to be thankful I was dodging getting the steroid shot in my spine. Then Dr. Hanson said he was putting in an order for the steroid shot through the insurance to be done next week. *joy* I took the information and put it in my pocket to be processed at a later time. A prescription form was scribbled on and I was told to come back next week. I am now taking prednisone (steroid), an anti-inflammatory, darvocet, and prilosec to keep my stomach calm from all of the dope they are pumping into me.

The plan is to shrink the swelling with oral and then injected steroids, and hope the pain all goes away. Hopefully I will then be able to give the tumor time to shrink from the Cyber Knife treatment I already had on it. If the pain and weakness persists, then I will have to have the little *ucker out.

Now I am home attempting to have some semblance of a normal day, whatever that means.

Attempted Follow Up?

2009-12-08T18:04:00.000-08:00

My awesome girlfriend Sheila helped me get the kids situated today, then took me to my doctor's office for my emergency follow up appointment. The plan was to go to my GP Dr. Hanson's office at 12:30, and he would call my neurologist Dr. Adler for further instruction. We arrive at his office to be told he was actually at the clinic and had already left for the day....... ????? I told the girl my husband called and scheduled an emergency follow up with him, so why would he be at the clinic and then leave? Sheila drove me to the clinic to see the other doctor in the group, only to find out he is a Physician's Assistant and unable to do anything. Dr. Adler said he needed to speak with my actual doctor, not a PA. I told the PA well then call Dr. Hanson and have him call Dr. Adler. They had us wait, and then insisted I just come back tomorrow. I told them I was switching doctors, that is absolutely ridiculous. I cannot walk, I am in intense pain, I can't take care of my kids, I could have permanent damage if this is not handled in a timely manner. They told me if I switched doctors this entire process would take even longer, and basically I have no choice but to wait another day and go back tomorrow. I finally gave in and picked up the Darvocet from the pharmacy and started taking it. It relieves some of the cramping and makes the pain more bearable. Sheila is a huge help, she is going to take me back yet again tomorrow morning, and hopefully then I will finally get some answers!

ER Trip for Tumor Swelling

2009-12-07T16:23:00.001-08:00

I debated whether or not to share this post. I tend to keep my ongoing health issues private with my family and the NF2Crew. I don't want to be the sick mom, the friend with a disease, the Deaf girl in the class. I am more than that. I am a wife and mother, a student, a writer, a runner, a friend and a daughter. I don't wake up everyday and think of myself as disabled. When I share about my journey with NF2 my intent is to inspire donations to CTF for a cure, share experiences with fellow NF2ers so they can get the help they need, and offer a blog where other people can become educated about the personal side of NF2. This blog is not for whining. There is no whining allowed. So, I debated whether or not to share this post...

Back in June of this year I had CyberKnife on a tumor in my lumbar spine at Stanford with Dr. Adler. On my last day of treatment I ran 3 miles, joined my husband back at the hotel, and had a nice glass of wine. As we made the long drive home I told Paul how incredible it is to treat a tumor on my spinal cord without major surgery and recovery. I assumed that was the extent of the experience, and came home to focus on running a marathon. Over the last 2 months I have had some ongoing pain and cramping in my lower back. My MRIs were reviewed, and no change in the tumor was noted. I carried on as usual, until over this last weekend. My lower spine has become so stiff, I was able to touch my toes a month ago, suddenly it was excruciating to bend over to wash my face. Lifting my legs to shave, carrying Mica, sitting up straight... one by one normal things became painful. I contacted my neurologist at Stanford and waited for a reply, which I knew would take time since it was the weekend. Today I woke up in considerable pain and planned to go to my general doctor for xrays to rule out an athletic injury. Then at about 10am I developed a horrible migraine. I was nauseous, dizzy, and my entire lower body felt like it was cramping inward. The pain radiated in shocks throughout my lower waist and upper legs. Friends took my kids, Paul came home and took me to the ER.

I just got home, the doctor in the ER convinced me to take darvocet for the pain, which obviously breaks my no pain medication rule. Pain medication is evil, I believe that pain should be dealt with to as much of an extent as possible. Today, the pain won. X rays ruled out athletic injury, and other testing ruled out kidney problems. Dr. Adler got in touch with us and said it sounds as though the tumor is swelling from the radiation. Sometimes, they swell larger before they shrink. I knew this was a possible side effect, I just didn't know how bad it was going to hurt. The tumor is most likely causing congestion in my spine. Tomorrow I am to see my regular doctor, and Dr. Adler will call and create a plan with him to deal with this. As of now the suggestions include a steroid shot into my spine or surgery to remove the tumor.

I'm home alone now, my skin is pasty and the pain is throbbing quietly, as though patiently waiting to break through the darvocet. My children are with friends, but my intelligent sensitive boy is already asking questions. He even asked his teacher at school. It breaks my heart to think of how I will care for them tomorrow. I don't want to be the mom who parks her kids in front of the TV while I sleep away the pain. So I wont. I still have a choice. I have finals next week, I will finish them. I will play board games in bed with the kids if I cannot walk around again. I will run Surf City in February, even if I have to hobble. I've had my eye on that medal for way to long to let some stupid tumor mess it up. These things may sound trivial, but they are the pieces that make up my life.

*Never Give Up*

Evil is Relative

2009-11-19T12:53:00.001-08:00

There have been noticeable lapses of blogging lately, obviously! My excuse is that I am saving all of my writing juices for my philosophy class. The last paper I posted here I only got a high B, I was so ticked at first. Then I grew up a little and reviewed my paper, and realized I was free writing as though it was my blog instead of following simple college paper structure. I hope to have rectified that mistake in the following paper! I still need a title, suggestions?

In Thomas Aquinas’ Summa Theologica, he begins each philosophical discussion by stating the most common objections people have given to the evidence he will present as the body of his work. In his discussion on “Whether God exists?” Aquinas lists the first objection to God’s existence as the existence of evil in the world. If God is infinite and good then evil would not exist. Evil does exist, and so God must not exist. Aquinas objects to this in the conclusion of this article with a reply that God’s goodness is so infinite, “that He should allow evil to exist, and out of it produce good.” I agree with Aquinas that the existence of evil does not disprove the existence of God, but for different reasons. Those who say evil is rampant in our world are usually defining evil by their own perspectives rather than as the natural occurrences they are. When events are inescapably defined as evil they occur by the hands of Man, and not God. Man is arrogant, and his chosen descent from common sense to religious dogma has led him further from God allowing the world to seemingly appear as evil. Evil does not exist, but God most definitely does.
It is natural for each of us to define the world through a filter made of our own experiences. When something horrible or seemingly cataclysmic occurs we are quick to characterize the event as evil. What seems evil to one may be justice to another. Evil is relative to the person defining it. A woman who is raped would label her attacker as evil, but in reality he is mentally ill because no mentally healthy person would rape another human. A storm which devastates a community may again be labeled as evil when it is truly a simple random act of nature. Any individual act of evil can be delineated as nature, whether physically or psychologically. God set nature on its course. Nature allows pieces to fall as they may, and it is incorrect to ascribe the events that cause us grief as evil rather than natural.
There are no definite statements in this world, there are always variables. When an entire group of people commit horrible offenses it is difficult to say that it was simply a natural occurrence. If a group of men rape a vulnerable woman it is very improbable that all of them were mentally ill. Most people would define babies being tortured and murdered during ethnic cleansings as evil. They ask themselves why God would allow these atrocities to occur, and conclude that God must not exist. When people choose to turn away from God there is an absence of Her, and events we describe as evil may occur without a natural explanation. The greatest gift God gave us is free will, and we return the favor by blaming Her for our own actions. These are not actually evil acts, but unnatural acts. God does not allow evil, people do.
It is Man’s arrogance that has assumed to conceive of God’s intent, and written a script to meet his own needs. Nobody knows God’s purpose, and to assume so is ignorant. All we can do is have faith in God, and not the politics of religion. The further away from God we walk and the closer to flawed dogma we follow the more heinous and animalistic our actions become. It is reason that separates us from animals, and that was God’s gift to us when he gave us free will. When we dismiss reason, and are ruled by greed, the result is a bleak outlook which most of us presume to define as evil. It is the exercise free will, not evil, which has led us to the present state of the world.
Evil does not actually exist. Bad things happen due to nature, man, and free will. When those things occur man tends to classify that which does not suit him as evil. There is no such thing as cold; cold is simply the absence of heat. Likewise, there is no such thing as evil; evil is simply the absence of goodness. Evil is a degradation of goodness, therefore it could not exist without the ultimate good to call its opposite. That ultimate good is God. Likewise, man is separated from God by degrees, and the further away from Her a person may be the more readily their actions will be definable as evil. So evil actions may occur when there is an absence of God, but evil itself does not exist as an entity to oppose God. If something does not actually exist, than it cannot prove that something else does not exist. Evil does not exist, and so God does.

Awkward...

2009-11-12T12:43:00.001-08:00

I have vague repressed memories of my awkward years, as everyone else does. Being called Olive Oil and Chia Pet, girls driving by me as I walked home alone and yelling profanities at me, being bullied, picked on... jumped. Then going home and being caretaker to my Mom while my Dad worked out of town for days at a time. I have come across so many people who whine about their pasts, when the truth is we all have painful moments scarring the space between the happy ones. I matured past the point of being bothered by the ignorant, and rejoiced in aging past the need to conform. No more awkward haircuts and hurtful nicknames, suddenly those people who tormented me for years on end disappeared, washed away in time. I found myself surrounded by other adults who couldn't fathom spewing hateful rhetoric at a strange little girl, and yes I know I was a bit strange. I attracted other positive people, and moved forward and away from my childhood. Or so I thought...
This morning I sat in my philosophy class, 5 minutes late as always, following a captioned discussion of Aquinas on a laptop. The professor was discussing how Aquinas used earlier philosophers' works, uncited, to prove the existence of God. This semester is more than halfway over, and for the first time, he asked us to form into groups of 3 or 4 to work as teams on a specific topic. Suddenly I was in 6th grade PE again, and I held my breath as the professor actually chose team captains and told us to split up on our own. I glanced at my captioner with a smile and looked at those grown adults sitting around me. Every single one avoided eye contact with me, and the girl sitting closest to me actually stood up and walked to the other side of the room. At this point I saw the professor glancing back at me, and around the room, noticing as well that people were scattering away from me like I was the Big Bang. Everyone in the class can see that I am Deaf, and that I have to sit with my captioner who is plugged in and stationed in a way that she cannot move, and yet still every single one moved away from me. This class, who was just discussing how it is possible for a perfect God to co-exist with evil, abandoned me like a pack of prepubescent boys afraid to catch cooties. I could see the professor making his way toward me, and I saw in my mind's eye how he would walk up and announce that I needed a group, forcing an already formed group to come sit with me, and everyone would turn and then again avoid eye contact with me. I told my captioner I would text her later, grabbed my notebook, and walked out of class without a second glance.
As the door fell behind me the cold fall air hit me in the face and the tears that rimmed my eyes dissipated. I walked with purpose to my van and allowed myself to sit for only a moment, attempting to absorb what had just happened, and reminding myself that it was absolutely ridiculous, and I am not in 6th grade anymore. "I'm not Josie Grossy anymore".... I'm not Olive Oil anymore! I am not the one with the problem, an entire class full of adults, and not even one was kind enough to include a classmate with a special need, that is the problem. The difference is, now I am old enough to see that. Unfortunately, it still hurts, and now I can't go home to my Mom and lay next to her in her bed as she watches Oprah, expecting my Dad to walk in any moment with his million dollar smile. Instead I have a husband with strong tattooed arms, and adorable children to climb onto my lap and tell me they love me with eskimo kisses.
I can't help but long for my childhood anyway, scars and all.

NIH Results

2009-10-23T11:31:00.000-07:00

Paul and I flew to NIH in Bethesda, MD so I could take part in the clinical study of NF2 being conducted by Dr. Asthagiri. My Nana flew in and spoiled my kids rotten, so I was able to focus completely on the trip. We left Sunday before sunrise and as the plane began it's descent into Maryland all we could see were golden leaves. I guess that is what Autumn is actually supposed to look like.

I had MRI's done by a high tech MRI, saw an ENT, a neuro opthalmologist, and finally on the last day sat with Dr. Asthagiri to go over my NF2 history. Luckily I had already emailed him a timeline, my memory is foggy, probably by choice at this point. The neuro opthalmologist saw what could be a tiny hamartoma in my right eye, we are going to watch it. The ENT thinks my choking episodes may be related to my reflux and recommended prilosec. The MRIs were incredibly clear, and Dr. Asthagiri was able to show me area by area how many tumors I have. I don't know if the MRIs were just more accurate, or if I have had growth everywhere, but everything seemed huge. My vestibular schwannoma which I have had treated with Gamma Knife are still stable, but the huge double blob at the top of my head made me cringe. Looking at my spine, I have a bunch of tiny, unassuming growths. The doctor assures me there is no need to worry. I know there is no point in correcting him, each of those tumors will grow. I know full well as of today I am just fine, it is the future those tiny tumors represent which I fear. At the very top of my spine, maybe even near my brainstem, was also a small tumor deep inside. This was my first introduction to this particular tumor, and my stomach twisted even as I smiled and nodded politely at the doctor. The lumbar tumor I had treated with Cyberknife looks larger now rather than smaller, but that could be from swelling. I've had cramping and pain, but attributed it to... I don't know... running 26.2 miles? So we will wait 6 months and reevaluate that tumor, if it continues to grow, I am looking at yet another spine surgery.

There is nothing I can do right now, or any decisions to be made. Like most people with NF2 all I can do it wait, and try to keep looking ahead. I can't crawl under the covers, I just have to shake it off and keep running.

Fall out...

2009-10-13T13:26:00.000-07:00

My stove is sticky, my laundry is in a huge pile, my kids are eating Top Ramen (again), and my acrylics are ready to fall off... I have a midterm, a paper due, and a week long trip to pack for. I have been so focused on this marathon, and supporting the team, that my home has fallen apart a bit. I wouldn't be too worried, except that my Nana is staying here with the kids while I am gone next week, and as Tish pointed out, this place should be as clean as a hotel... um how about a motel?

Instead of really accomplishing much today I have puttered, sipped coffee, and moved piles around. I am really good at reorganizing piles. Go me! However, I did get my marathon wrap up emails out to both the team and my supporters! I also found out that I was mentioned in the Long Beach Press-Telegram's write up of the Long Beach Marathon! Front page! I plan to play the "I ran a marathon" card for another day, and yes that does include wearing my medal everywhere.

Now I must peel myself off of this desk and actually accomplish something concrete before Paul comes home. If he gives me the look, I'll just wave my medal in his face.

26.2

2009-10-12T11:09:00.000-07:00

26.2 Miles. I have a newfound respect for the distance. Yesterday morning at 7am in the cold beach air I found myself looking out at a sea of runners. Everyone was facing one direction and I noticed a few old guys with their hats over their hearts. Our National Anthem played itself out in my head, and before it could finish I joined the thousands of people around me applauding. The NF Endurance Team had gathered bright and early. We all huddled together, a splash of bright yellow pumped and ready to run. We hugged our volunteers extra tight and wove our way to the start, flashes went off everywhere as the mass began to move forward and onward. Most of the team took off individually, everyone running their own pace and fighting their own fight. My friend Beth and I had made a pact to get each other to the half-marathon point, where she would finish strong and I would continue into the unknown waters of a full marathon...

The Might NF Endurance Team! Love all my family representing! I had family there from Las Vegas, San Francisco, and San Diego!

A marathon is a mental battle, after 3 or 4 hours of steady movement, you start to feel every little thing on your body and you get.... BORED. Around mile 15 my knee started to click with every step. By mile 16 I was unable to put any bounce in my run at all. I tried to focus my mind on the goal, but finally settled into a painful shuffle that most people would not define as running. Those people can kiss my butt. I told myself I would speedwalk for 5 minutes, then I would run, only to find it was not possible to run. I can push through any pain, but I knew if I ran my knee would just collapse.

My doubts started to eat away at my intent. As the miles slowly dragged by I started to calculate my finishing time in my head. I passed Holly and then Jen, they were coming the opposite way, at least an hour ahead of me! I was so proud of them! I had wanted to finish in 6 hours, and was now looking at a 7 hour finish! I searched longingly for each mile marker, and obsessively checked my stop watch, as though it would somehow make a difference. As mile 20 creeped up I saw Beth on the horizon! She came back for me! She had finished slow for her time too, her broken foot had held her back, but she came to keep me company for a mile and called Paul to tell him to come as well. After Beth headed home I kept pushing, looking over each hill for Paul... and then around mile 23 I saw his bright yellow CTF shirt and almost actually ran, imagine that. I wanted to cry but there is no crying allowed in running. I hugged him as tight as I could and we started walking together. I talked his ear off, filling him in on all of the inconsequential things I had seen over the last 6 hours. He held on tightly to my hand and I just thought, this is why I married him. He is my best friend. I wouldn't want to be here with anyone but Paul.

Finally, like a mirage, I saw Val and Shaleyah standing near the turn for the final stretch. I stopped to get hugs and used the energy to take off running, I saw my family cheering like crazy near the finish line. Paul said you could hear them a mile away! I reached them, grabbed my kids, and said RUN! Mica tottered on her little legs trying to keep up, my Nana jogged next to me and JT held on tight to my hand. I could feel Paul right on my heels, supporting me as always. All together we crossed that finish line! Suddenly it was over, they handed me a medal and everyone was taking pictures. I felt tears rim my eyes but blinked them away, no crying allowed!

Finishing the full marathon was an amazing accomplishment, and I raised over $3500 for CTF! It is not too late to donate, you can click the collage of my family I have lost to NF2 on the left to visit my Active Donation Page.

Thank you to everyone who came out to support me!

I finished! The clock time is for the 1st wave, my official time 6:50:30!!!

But wait! This post wouldn't be complete without thanking Bob Skold!! We had a blast this weekend and I totally talked his eyes off with my hands... he loved it HA! He said I always have a story... tis true!

The Examined Life

2009-10-06T13:21:00.001-07:00

I left my flash drive at home and am at lab, wanted to be sure I didn't lose all of this work and thought I would share my FIRST DRAFT (just fyi for my Dad and his red pen) below. Comments etc are welcome thanks!

It was Socrates who said that “The unexamined life is no kind of human life.” The most important word in this statement is obviously “life,” and in order to make stipulations regarding life it must first be defined. Life is the act of living, and the act of living is to exist in the physical world. The physical world is what we perceive through our senses combined with the subsequent interactions between our minds and the matter which surrounds us. Socrates specifically refers to human life in his statement. So he is referring to a distinctive type of life and not simply the act of existing. Any animal is capable of life, but let us assume only humans are capable of reasoning and thinking. Apparently, being a healthy and intelligent human being is not good enough for Socrates. He says that on top of this your life is only worthwhile if you examine life itself. By saying “The unexamined life is no kind of human life,” Socrates is insinuating that a life without philosophy is similar to an animal life. He is saying that those who choose not to delve into the meaning of life itself are simply going through the motions of life without experiencing it in full. Every human that is born experiences life regardless of whether they examine it as they do so, and each of these lives is just as meaningful as the life that Socrates supposed we all should live
At the age of seventy, Socrates was put on trial for atheism and corrupting the youth of Athens. He had developed a way of questioning erudite men who thought themselves to be knowledgeable and leaving them with no choice but to admit ignorance of whichever topic they had originally assumed to be knowledgeable of. He would advance upon a philosophical question by asking first for the unwitting victim to linguistically define an elusive topic. For example, while discussing how virtue is acquired with Meno in Plato, Socrates first coerced Meno into attempting to define virtue. Socrates knew Meno’s answer would be easily disproved, thereby undermining all other points in Meno’s argument. Upon eliciting a response that he desired to further his argument, Socrates would pick out detail after detail within the argument to prove his point further. Often his conclusion would have nothing to do with the original question. In the case of his discussion with Meno, Socrates guided Meno through a frustratingly ambiguous dialogue, and finally left him with the answer that it is impossible to inquire into the actual nature of virtue. He left Meno, and all others present, further perplexed then when he began. He reached no conclusion and left a trail of angry men in his wake.
This pattern of dialogue is now called the Socratic Method and led Socrates to his trial. At the trial Socrates gave a rousing dialogue later known as the Apology. He was found guilty despite his clear defense. As was the way in ancient Greek democracy he was again allowed to speak, and suggest an alternative sentence from the prosecution’s proposed sentence of death for the jury to choose from. Rather than feign repentance for his incessant questioning Socrates said that, “The greatest good for all mankind is this: to everyday discuss excellence and all other thing you hear me discussing, examining myself and others, and that an unexamined life is no kind of human life…” In the moment that Socrates made this statement it had the right meaning and legitimacy attached to it. However, like most other philosophical musings, the statement that “The unexamined life is no kind of human life,” does not equally apply its’ truth when taken out of context. In this situation the context would be that of the trial, and Socrates defending himself. Outside of the context of Socrates’ trial the insinuations attached to this statement bear little resemblance to reality.
Socrates was always beginning his dialogues by proclaiming to know nothing. In the Apology he even explained that a wise man is only wise because he is aware he knows nothing. So Socrates spent his entire life searching for nothing, and therefore accomplished nothing. The man did not earn a living or provide for his family, he took no pleasure in physical gratification, and he left behind a clouded legacy which can only be found by reading the works of other men. He was unafraid to die because he firmly believed that all of the things he held in high esteem, such as ethics, truth, and knowledge, existed in their purest forms only in the realm of the dead. During the course of his dialogue with Meno, Socrates led a young boy through a simple geometrical puzzle, and imposed the correct answers on this boy until the boy believed he had solved the riddle independently. Socrates claimed the boy already knew the answer because he learned it before being born, while his soul resided in the world of the forms, and was simply shown how to recollect the answer by Socrates. The conclusions Socrates draws in the story are so ridiculously unjustified. His belief in the ability of Man to recollect and not learn is a wild assumption without any merit. Why would he make suppositions about death when he abhorred making assumptions about life? His intent was obviously to inspire those around him to use common sense to reach ethical conclusions, but his arguments were flawed and contradictive. He spent his entire life mired in these arguments, and as he debated the technicalities the true meaning of life seems to have flown right past him.
The life of a human is precious, no matter how they spend that life. If a person is born with an exceptionally low mental acuity and therefore unable to wax poetic on the intricacies of virtue or knowledge, their life is no less meaningful then that of the self proclaimed genius they live next door to. There are decent people all over the world who work hard everyday, come home with dirt under their nails, and tuck their kids in tight every night. Many of these people do not take the time to examine their lives, they are too busy living it to obsess about the meaning of it. Life is for the living, and Socrates was wrong to believe that any life could possibly be unworthy of living. Every person has their place in the world, and if they all solely focused on examining life in the way that Socrates suggested, nothing would ever be accomplished. So while the world may be a better place for the existence of philosophy, it equally benefits from all other studies and actions as well. To live the human life requires not just the examining of life, but also the living of it.

Costume Benefit a Success!

2009-10-04T17:38:00.000-07:00

Saturday night I dressed up as a french maid and tottered on my biggest heels to South Forty for the CTF Costume Benefit! I like to think that fun was had by all, and we raised $211 for CTF!! Groovy Myra won the Most Creative Costume, Masked Anthony won for Scariest, and Gypsy Willie took home the Sexiest Prize! Thank you to all my awesome friends who came, drank and learned a bit about NF!

Now that I have the party behind me I am focusing on the marathon, which is exactly one week away! I'll be leaving home Friday morning and working hard all weekend to run the NFET expo booth and support the team in any way I can! I'm looking forward to having a brand new medal to hang over my bed!

Bebu Moto Moto 433

Myra, Jolene and Anita as the Pink Ladies,
there's Paul in the back and George Lopez snuck in for a shot!

D-A-R-C-I lol

Fred & Willie with Miena and I

My BFF Adria as Erykah Badu!

Darci, Adria, Beth, Sharice, Ann Marie and Daniel

Jarrod, Corey, Paul and Anthony

Back to Basics

2009-09-30T10:51:00.000-07:00

For the last week my blog has sat empty, hiding her face in shame. I just can not rectify quitting the full marathon with myself. At night I toss and turn, unable to see myself finishing a half in my mind's eye, instead I remember the split off point at Long Beach last year where the full marathon runners wearily continued on while us half marathon runners sprinted to our easy finishes. Back then I thought those big-calved people in nike running shorts downing clif shot bloks were absolutely insane, and by the time many of them finished I was at Boston's slamming potato skins and beer. This year is different, I am different, and I have to run the full marathon.

The naysayers started in on me several months ago, and the doubt manifested itself in my sub-conscious, rearing it's ugly head in the depths of my longest runs. Never before had I stumbled to a halt mid-mile with trail left before me, but it seemed like every training run I did I took on the weight of a marathon and forgot to focus on the mileage at hand. How did I allow myself to look away from the horizon? Usually I know what to tell myself to keep running past the breaking point, but my voice was drowned out by my pulse beating ever harder in my head as my mileage climbed higher. No music, no complex issues in my life I need to work out, no time to find a challenging new trail, and a pile of laundry awaiting me at home just made every run feel lethargic... slow motion... even boring. I longed for the last mile as I started the first, and forgot to enjoy everything that happened in the middle.

As I have rested my knee and focused on shorter runs over the last 2 weeks I have realized how much I missed running, and why I set out on this journey to begin with. I can't just give up, I have come too far and worked too hard, I expect more from myself then being a quitter. Come race day I will cross that damn finish line at 26.2 miles. I may have to run and walk intermittently... but my yellow CTF jersey and I will finish!

(and if I ever try to quit again you people have to slap some sense into me!)

Live to Run Another Day

2009-09-22T10:42:00.001-07:00

In our family we have a tradition, on your birthday you are the big bad boss. Everyone has to do what you want, and you don't have to lift a finger... for the entire weekend. Last night in a moment of sudden genius I turned to Paul and informed him that for my birthday he would be running a few miles with me. He begrudgingly obliged.

This morning after dropping the kids off, we laced up our running shoes and took off at a steady pace. I felt my pre-birthday wine sloshing in my belly, and the heat beating down my shoulders... but with Paul alongside me I was content. We covered just 2 miles, a perfect first run for Paul, and as we walked back to our place my knee started to swell. As we contorted into yoga positions I kept glancing at my knee, unrecognizable from just an hour earlier.

26 miles is incredibly far, and I will finish a marathon. There is just no way I can run that distance 3 weeks from now. My body is not ready. I have no choice but to drop down to the half marathon, and continue to train for the full marathon at my next race in Las Vegas.

As I type this I want to delete it, I want to put my shoes back on and run 20 miles right this second, proving that I am not a quitter. Everyone who runs a marathon has doubts, but I have to be realistic and recognize the difference between doubts and an injury. If I attempt the full marathon chances are I wont make it the entire way without seriously damaging my knee. I want to live to run another day. I am not quitting, simply granting myself an extension.

I sincerely hope I am not letting any of my supporters down! I will still run the half marathon, and then be prepared to cheer on all those full marathon NF Endurance Team warriors as they cross that finish line. I'll never give up...

The Knee Plan

2009-09-18T12:01:00.000-07:00

This week I went for 2 slow runs, only 4 miles each, and each time around mile 3 my knee started to click. By the end of my run yesterday my knee had swollen again, and I knew if I wanted any chance at running the full marathon in 3 weeks I had to do something! I called Dr. J, he is my sports chiropracter and treats me pro-bono because he is absolutely awesome. I hadn't seen him in a while, life had been in the way, but he welcomed me with a warm smile and explained exactly what was going wrong with my knee... When you lay your legs flat with your feet flexed your knees should point straight up. Unfortunately mine point slightly in, some people's point out, everyone is different. As my feet strike the ground my knees bend slightly in, causing friction and tension to build along my outer knee, which is where I have the pain. Dr. J made chiropractic adjustments to my legs to train the muscle to move correctly. I can't exactly explain what he does, but when he starts working I can feel the difference. After making several adjustments he taped up my knee with K tape and sent me home with instructions to run with the tape on and take it off after 2 days.

I'm going to keep taking short runs when I can throughout the week, and rest in between. Next weekend I will try to run my last long training run and finally knock that 20 miles back! 20 miles sounds nothing less than daunting right now, but I know I can do it!

10 Signs You're a Fabulous Running Mommy!

2009-09-14T08:17:00.000-07:00

1. You wear a fanny pack and insist on calling it a "Hydration Belt."

2. Even on a beautiful day you are stuck running on the treadmill.

3. You own biker shorts you've had since the 80's.

4. You absolutely love the race expos and spend time there... shopping.

5. Your fastest mile is 8mn on the treadmill and you are insanely proud of it! (as you should be!)

6. You tried following a marathon training schedule, but the long runs were longer than your preschooler's schoolday.

7. You "accidentally" leave the timing chip tag on your running shoes for a week after the race and sport it at the gym.

8. You want to scream at the young girls on the race course... "It's a sports BRA it goes under your shirt!"

9. You call your girlfriends when your Runner's World arrives, and let your subscription to Marie Claire run out.

10. When you get back from a run you... start laundry, do the dishes, feed the kids, make the beds, clean the bathrooms, have a shake, take a shower (with the baby), go to Target, go to a birthday party, stop by Trader Joes, come home, start dinner and have a big ass glass of wine!

I will...

2009-09-12T08:31:00.000-07:00

I'm sitting at a bus stop approximately 14 miles from my house. I have dirt smeared across my calves and salt extracting from my pores, but that doesn't bother me. All I can focus on is my knee, which is swollen and throbbing. At 10 miles into a planned 20 mile run with Jen and Holly my entire body felt good, but my knee digressed. What started as a dull ache became a sharp stab of pain with each step until, finally, I admitted defeat and stumbled to a stop. I told the girls to stick to the pirates code, they protested but I assured them I would survive. As they continued on without me, braided ponytails swinging neatly from side to side, I plopped onto this cement bus bench. I attempted to extend my knee and sucked my breath in sharply, waiting for the pain to subside, before calling Paul to come pick me up.

I wouldn't watch 3/4 of a movie, or return a book to the library after only reading half. Nobody likes a quitter, and as I hobbled over to climb into the car I looked longingly at the unfinished trail stretching toward home. I know I need to rest my knee, ice it, and slowly build my mileage back up. If I had limped through the rest of today's run, I would have no doubt sustained an actual injury and been completely unable to run the full marathon in Long Beach. Along with the nagging pain comes the self-doubt. How will I run 26.2 miles? It is so much further than I first estimated. My mind battles within, slinging comebacks at every complaint. Only .1% of the population finishes a marathon in their lifetime, and I am so close, there is no way I can stop now. I will finish the marathon... I will sell all of the tickets to the benefit I am throwing... I will pass my classes and transfer to a university... I will reach each and every goal I have set, and when I reach them, I will continue to set more.

*NEVER GIVE UP*

CTF Benefit Costume Party!!

2009-09-11T08:39:00.000-07:00

5 weeks to 26.2!

2009-09-08T11:58:00.000-07:00

As most of you know I was born with Neurofibromatosis type 2, a genetic disorder that causes tumors to grow throughout my brain and spine. I've had numerous surgeries and radiation, and lost 3 family members to the disease, including my Mom. My son JT has NF2 as well, and is my hero! At age 6 he is already visually impaired, but he never let's it stop him! He is obsessed with breakdancing and Michael Jackson, and uses sign language to help me wherever we are at.

Last year I joined the NF Endurance Team to raise funds for NF research and fight back! The NFET raises awareness and research dollars that enable treatments and a cure for neurofibromatosis.This year I am serving as Team Captain at the Long Beach Marathon, and am trying my hardest to bring as many people affected by NF together as possible for a day of running and celebration!

The Long Beach Marathon is now just 5 weeks away, and I will be completing my first 26.2 mile full marathon! If you have read my blog you know I have been struggling with the heavy weekly mileage during training, and have had doubts. I was thinking this morning that training for this marathon is so much like having NF2! It is a constant uphill battle, and I need to be prepared not just physically, but mentally. When I prepare for a surgery I go through a very similar process, working out to increase my muscle strength, and controlling my emotions in the face of an impending struggle. With at least 5 serious surgeries in my past, I know I am capable of running this marathon! After all, it's better than brain surgery!

So as I continue to train, and push forward, I want to thank all of you who have taken the time to donate on my donation page or volunteered to help us out on race day! In a time when all of us are being more careful with every dollar, it means so much to me to still see people donating to such a serious cause. CTF is making great strides in the fight against NF, funding research programs and clinical trials as well as promoting awareness! I am proud to be a part of such an amazing charity!

My fundraising goal for this year is $5000, and as of now I have raised $1,830! So right now I want to ask each of you to consider making a donation and helping me get closer to that goal! Every dollar counts, and I greatly appreciate any size donation. Donating is simple, just CLICK HERE! If you are unable to donate online and would rather write a check, please email me and I will get you set up right away.

Food Labels

2009-08-31T12:37:00.001-07:00

2 years ago when I stopped eating meat I had several flimsy reasons which over time grew into strong convictions. If everyone in the world were vegetarian it would end world hunger... The fecal pollution from raising enough livestock for mass consumption is a huge part of global warming... We wouldn't eat our pet dog or cat, and all other animals deserve the same consideration... Cutting out meat and dairy, when done correctly, is healthy and promotes safe weight loss.

People always ask me if I eat fish, as though a fish is somehow less of a living creature than a frog or dolphin. There is the constant comment that "fish is not meat." Fish is indeed meat. The definition of meat is the flesh of a living creature, and it confuses me as to why people make a distinction between fish and all other animals. I am aware Catholics are allowed to eat fish on Fridays, even though they are not supposed to eat meat, and that is where the confusion has been bred. My Dad laments not baptizing me as a baby, as though it somehow contributed to my heathen ways, so maybe if he had then I would believe fish is not meat!

On top of not eating meat, I have chosen not to eat eggs or milk, but I do eat cheese because I am only human. Yes I am aware cheese is made from milk, I can only do so much people. Over the last 2 years I've also had the occasional slice of french toast, and once I popped a tiny shrimp in my mouth in Vegas when no one was looking (okay twice!) I felt worse for being a hypocrite then for murdering the shrimp.

That is why things are beginning to change. I had an omelet this weekend, and forced the image of an egg being a chicken's period out of my head. Then it happened, I ordered the seafood combination at Benihanas and enjoyed every bite of that shrimp and lobster. So I cannot call myself a vegetarian, and while some have pointed out I am technically still a pescaterian, I am just done with being defined by my food choices. The fact is that eggs and chicken really skeeve me out... I love pigs, they are intelligent and beautiful creatures (they also have the longest orgasm of any mammal, look it up!)... and beef just looks like bloody carcass to me. Lobster and shrimp have just never triggered my guilt switch, and instead of being a hypocrite I am just going to move on from the labels and eat what I want in moderation. That makes me a flexitarian, which is the new buzzword with all the healthy running mommas, I guess that is one label I can live with.

Longest.Run.Ever.

2009-08-21T15:02:00.000-07:00

This morning I had 15 miles on the agenda, and set off with my phone fully charged and fuel belt packed. I headed up 2 miles towards the dam that crosses the lake in the center of Bonelli Park. The directions I had copied from http://www.mapmyrun.com/ were specific, but as I trotted along I realized there were no street signs. I pushed away my nagging worries and continued on, but soon I was forced to stop, I had reached a fork in the road and again there were no signs. I followed my intuition and it took me in a big circle, I always was bad with directions. I went the only other way there could be and finally made my way over the dam. I tried to look out at the lake and absorb the atmosphere, my breathing was already getting raspy and I was only on mile 4. I passed a dead squirrel, it was keeled over and dead for no apparent reason, it's little buck teeth still sticking out. Ominous, but not enough to slow me down.

At mile 6 the run was finally getting started. I followed the road and my handwritten notes were right on. I passed street names I had scribbled along with mile numbers which I knew were slightly off after the extra half mile I had run. My pink plastic stopwatch showed me that I was staying on track with 11 minute miles, slow but perfect for long training runs. Suddenly I became conscious of the sun beating down on my chest and realized there were no more trees. No more trail. No more park. Just a long stretch of hot pavement quickly getting warmer in the late morning sun. I reached for my fuel belt only to realize all of my water was gone, and only 8 miles in to a 15 mile run. I felt the first pangs of desperation. The usual mental games I played with myself were of no help. Self doubt wedged it's way in and my thoughts were consumed... Is this the wall? At only 8 miles? I just ran 13.2 last month! How am I going to run 26.2 miles if I can't run 8? How many times does 8 go into 26.2... about 3 and a quarter... could I run this 2 more times? If I ran all the way home from here, I still wouldn't have gone 26 miles...

On it went, until I realized I was walking and not running. My first failed run, I was walking! I saw an office building like a mirage, in the middle of a random field. I walked in covered in sweat and found a bathroom. I just needed to refuel, wash my face with cold water, and get back out there! Moments later I was back on the route, and starting to feel better. I followed the street up as far as the directions told me to, then looped back down to look for the southern trail entrance, eager to see if the path back would have more trees and a better view. Only 5 miles left and I passed a little airport, I curiously watched the tiny planes lined up along the field. There were roadblocks ahead but after a slight pause I continued on, and soon saw a fellow runner coming back the other direction. We gave a slight conspiratorial wave and I carried on until I again came to another fork in the road. It was getting so hot, the water was giving me cramps, and again I had no idea which way to go. Frustrated, I kicked a rock and tried to fit myself into the shadow of a tree to cool off. One way was a dirt path and the other was paved, so I chose the paved and just as I started to run again, came upon yet another fork! One way looked like a trail, and the other just a camping area, so I followed the trail. As I left the dusty airport road behind me the trail began to snake closer to the lake. Trees were woven densely together on either side, and joined in an arch, casting the most the most beautiful fear-inducing shade I have ever gone through. I was alone, lost, and surrounded by leering branches but soldiered on. I kept telling myself to just stick to the path, in the general direction of my car, and never give up. I was falling farther and farther behind on my 3 hour goal, when again I came to a fork! I wanted to cry, running was not possible when I had no idea where I was going. I spied a car through above the trail and picked my way across a stream, my shoes drenched I ran to the road and I realized that again, there were no street signs, and I had no idea which way to go. I sat on a big rock and fought back tears, one snuck out and snaked its way down the dirt on my face. I started walking again, there was nothing else I could do, when I saw a streetsign! Somehow I was back on the north side of the lake on the long road that had taken me out past the airfield. I had no idea how, but realized I was about 3 miles from my car. I had to salvage this run, it was not a failure, yes there were setbacks but it wasn't over yet. The final two miles I ran and walked when I had to, when I crossed the dam again I knew I was almost there. As I walked the last stretch and saw the street my car was parked on I felt defeated and elated at the same time. I had run 16 miles and next time I'll know where I am going. Sometimes the trail wins, but that doesn't mean I lost.

Guilty?

2009-08-18T09:24:00.000-07:00

I woke up yesterday and stared at my ceiling planning my morning run. I laced up my running shoes, put Mica's hair in a beautiful braid, got in the van and drove to a park. As Mica played I sat on the bench, willing myself to head to the gym as planned, but my legs felt heavy as though I was sliding bricks along with each step. The sun bounced off the sand and absorbed the last of the energy I had mustered up over my peanut butter and banana earlier in the morning. Mica walked up and simply signed "home," not even my offers to push her in the swing could persuade her to stay. I held her tiny little hand in mine as we trudged back to the van and went back home. Another failed run, that was 2 in a row. Why did it feel like the sky was weighing me down?

Paul got home moments later from yet another day in court related to the bar fight he was involved in. He was so confident, I assumed there had been yet another postponement in the case. Instead he just said, and with a smile, that he plead guilty. I felt the air rush out of my body and the anger plump my veins...Why would he plead guilty when he acted in self-defense? It is just ridiculous to me. The other man initiated the entire fight, and we have a witness. Unfortunately the supposed victim was leaning toward testifying against Paul. This makes no sense to me, the man is in a gang. What kind of gang member testifies? Didn't he get the gang member handbook? Hasn't he ever seen the Godfather? ... Paul explained that the DA offered him a deal, no jail time, just a small fine and anger management classes. Paul is ecstatic that the entire ordeal is behind us, and I know I should be too, but suddenly I found myself crying. I just couldn't process the idea that Paul plead guilty, and it was over.

I don't have to fall asleep afraid I'll wake up to an empty bed one day. I don't have to worry about getting jail letters, and accepting collect calls, and driving to whatever hell hole my husband was assigned to each Saturday with JT and Mica in their most adorable outfits, waiting to get a hug from Daddy. Yes, I glad it is over, but I am just so angry it ever began. I'm furious that a person can just push everyone around them until they snap, and then be labeled a victim and recieve support from the court system. I am frustrated that Paul had to miss at least 6 days of work for court. But on top of all of that, I am really livid that Paul should not have been at that bar to begin with.

I never did get out for a run yesterday, I followed Paul around like a puppy dog to get some errands done, keeping him in my line of sight as though at any second he could still disappear. We didn't celebrate or even discuss the situation any further, but I slept better than I have slept in 6 months. Now I am heading out for a run, and I know I will complete it and go on to finish a marathon in 2 more months. No more quitting... no more worrying...

Donut Day

2009-08-09T11:13:00.000-07:00

Lopsided pigtails peek over my bed and a tiny mohawk outline creeps past my feet. Suddenly a puppy is excitedly licking my ear and JT and Mica bound onto the bed, jumping on me and signing D right in my face with unabashed expectancy... It's Sunday Mommy! It's DONUT DAY!!! Mica rubs her protruding belly and says I hogrey and JT sticks his lips out in mock sadness as though I haven't fed him in days. I tell them ok, tell Daddy it's time! When Daddy comes back in the door with that little pink box we're all ready and waiting with our pajamas and smiles. Those little piles of sugar may cost just a few dollars, but to us represent the end of another week together, and the beginning of things to come. Donut Day frames our existence and gives us permanence. Even if Daddy is at work all week, or Mommy has been sick, there at the end of the week is a routine that gives us all stability. That is what makes these 4 random people a family. Who knew a donut could be so powerful?

End of an Era

2009-08-06T18:41:00.001-07:00

So the next time I run a half marathon, someone please remind me not to take an entire week off to eat, drink and be... lazy! This week I had to break the bad habits that seem to form much quicker than good habits. My first day back at the gym I stepped on the scale and had gained 3 pounds! In one week! Why does it take 3 months to lose 3 pounds and only 1 week to gain it back? That little stab in the eyes has motivated me throughout this week and I already feel myself getting back into my groove. Eating this week has been excruciating, last week at one point I had about 7 pieces of pizza for dinner, dipped into 2 full containers of garlic sauce and washed down with a couple of beers! Not even light beer! So this week when I attempt to fill up on a normal portion size there is space left over and I am just plain hungry. Do I regret those 7 slices of red crushed pepper covered heaven? Not one bit! Nor the wine, plate of chile rellenos, or 2 bags of Doritos. The extra sets of reverse crunches that trashed my core today were so worth the potato skins and pazookie I added to my regular pizza and 2 pints at BJs. Pizza and beer seem to be a theme here.

Vacation time is now over, JT starts back at school Monday. With the school year comes early alarms, mostly vegan meals, hard workouts, and early bedtimes. Only 9 weeks until I run the full marathon in Long Beach! Oh my goodness I just counted that on the calendar and it is much sooner than I thought, I have a lot to get done, and I'll just have to do it without pizza and beer!

Daddy's Home

2009-07-30T09:31:00.000-07:00

Today is the last day my husband will be working out of town, at least for now. For the last few months we have lived separate lives. He wakes before dark, works 10 hour days on the steel, has beer with the guys and plays dominoes all night in their shared motel room. He eats top ramen and Jack in the Box, a maid makes his bed every morning, and twice a week he makes the 4 hour drive home to see his family. I have no idea where he is at most times, he showed me pictures from a Michael Jackson dance contest he attended the previous week, I didn't know he had gone. I married my husband to share a life with him, and when people ask me where he is I want to say he went to the store, not he is somewhere in Santa Barbara that I would need my GPS to find. When he visits I feel the limitations of his time, he yearns for sleep and I hold myself back, greedy for his attention. I settle for sleeping in his strong arms, his hands a deep dark brown from the sun, his cuticles gnarled and dry, his fingers swollen and at least one broken. He's too heavy and eventually he turns over, leaving me to stare at the outline of his shoulders and drift off pressed against the small of his back. I feel him kiss me good bye at 3am every Monday in the midst of my deepest dreams, and when I finally break through my sleep my heart drops at the darkness of our empty bedroom. The days he's gone are oddly normal, I've grown accustomed to his absence, which may be worse than missing him. When he comes home I jump on him, my legs wrapping tight around his waist and I inhale his scent as his unshaved face scratches my cheeks. He kisses me fiercely every time, but already I feel the clock tick. When he comes home tonight the clock will stop, but I will try my hardest to hold onto that feeling and not take his presence for granted. Our lives will intertwine again as naturally as they have the past 5 years, and maybe the next time I am irritated with him for leaving his clothes allover the floor I will stop for a minute and remember our empty bed, and just be glad his clothes are on our floor and not a motels. Maybe... maybe not...

Paul & his bed buddy Jeff, no more Monkey Bites, he's mine!

Happy 5 Year Anniversary Bebu!!!

For Mom, In Heaven

2009-07-29T12:20:00.001-07:00

What does Heaven mean to each of us? A state of mind, a physical place, an ends to a means, an eternal reward... July 22nd was my Mom's birthday, or would have been, how does that go? When a person dies before their time do they still get a birthday? Only those of us left behind experience the date and internalize it along with the list of other moments never to be lived.

When a loved one passes we placate ourselves with children's tales of Angels watching over us, although the Bible specifically lists Angels as uniquely created individual entities, and tells of a sleep to be had by us all between our final breath and the day of Judgement. No mention of magical dead people capable of hearing prayers as demi-Gods. As a non Christian I am free to create my own platitudes, but bristle at the hypocrisy of denying Christ(ianity) while simultaneously subscribing to random New Age mythology. It is religion I avoid, not God, so how do I rectify my spiritual needs without being guilty of writing my own religion?

Religion is a boundary Mankind relies on to enforce the moral restrictions we place on ourselves while meeting our innate need for an understanding of our existence. God must exist because we have a need for Him. Our relationships with God are as necessary and inborn to us as verbal communication. Verbal reasoning is proof of the existence of speech, as theology is proof of God. Just as there are a multitude of languages, each providing the necessary dialogue within its cultural context, there are a myriad of religions, each independently capable of religious satisfaction.

If each of these religions explains Death in it's own way, how are we to know which is correct, and who are any of we to call any of these incorrect? So if we take the religion out of Death we are left with only God, and in most major religions God has a place of existence beyond the physical realms of Earth. While some may be pantheistic there is still a common consensus among many major beliefs that this place, what I can only call Heaven within the confines of my own American cultural context, is the final resting place for those who have lived a decent life. Even the ultimate destination of reincarnation is to attain a level of wisdom as to escape the mortal coil and be released to another plane of existence, and is governed by the nature of our actions.

So we can justify a belief that only the good survive, in at least a metaphysical form, without sacrificing our spiritual independence or subscribing to a dogma that assaults our common sense.

When I ran those 13 foggy miles in San Francisco on Sunday I had scrawled "For Mom in Heaven" in sharpie on my arm. I can still see the remnants of ink stained skin. As I stepped off the Golden Gate bridge, which I had passed under by boat with my Mom as a child, I mentally whispered Happy Birthday Mommy. While I intellectually am aware that my Mom's soul exists somewhere far away, it warmed me to think that somehow, someway, she knew. Regardless of her place in Heaven, I know without a doubt she exists in my heart. As sappy and self gratifying as that belief may be I hold onto it in all the moments my soul aches for hers. I guess that is what makes me human.

(and yes, I originally spelled Heaven wrong and had to fix it, it was 4am and sharpies don't have spellcheck.)

San Francisco Half Marathon!

2009-07-28T09:54:00.000-07:00

I'm back! The last week up in North Cali was a wonderful trip. We were able to spend time with my Gramps and Nana, take the kids on the BART to the Exploratorium, and enjoy the clean air and limitless trails surrounding Moraga. I took a solid 8 mile run on Wednesday on a path that cut through fields and huge trees, I felt like a dog finally let off a leash and leaped through the entire run...

Paul drove up from Santa Barbara Friday, and we spent Saturday at the Health expo and walking around the city a bit. My Gramps owned an elevator repair company in SF for years, and as a child I would spend a week or two each year with him. He would take me with him to work, a perk of being the boss, and let me terrorize his secretaries all day with my constant pleas for attention. SF has it's own vibe, as though it exists on a separate wavelength, and I always enjoy a chance to visit. We headed back across the bay to the NF Endurance Team dinner where we were able to break bread with others who have stood up to fight against NF. We all hugged tightly at the end of the night, unsure of if we would find each other amidst the mass of runners the next morning...

4:30 AM, bright and early Sunday morning, I dragged myself out of bed and growled at Paul a bit before shaking off the remnants of a half-nights sleep and lacing up my trusty running shoes. I pulled my black hair into tight pigtails and smeared sunblock on my makeup-free face. Runners don't need makeup. Ok... maybe just a touch of water-proof mascara!

Paul and my Nana had come to support me and we were able to locate some of the team. I crossed the starting line surrounded by bright yellow CTF singlets! I gave my friend Bob a big hug and dropped into pace with Jill and Elise, who had finished half marathons before in 2:08! I planned to stick with them as long I could and then fall back as necessary, I worried their pace would make me burn out early but wanted to get as far ahead as possible... The course was scenic, passing typical tourist spots and running along the bay leading from the Bay Bridge to the Golden Gate. We got up the first small hill inconsequentially and the Golden Gate drew closer. I kept my eyes trained on the ground right in front of me, always worried my balance will cause me to fall. From mile 4.5 to 5.5 was a steady butt-burning incline, I kept taking 10 step walk breaks and then running to catch up. As we reached the top I choked out... no... more... hills!

We ran to the bridge and stared up at the huge towers looming above us, the ground was slippery with fog and the 1 lane course was crowded with excited runners of all ages. A quick clock check told us the hill had set us a few minutes behind schedule for our planned 2:20 finish. We put some pep in our step, dodging around slower runners and squeezing by on the sides. The bridge didn't have mile markers and we lost track of our distance, feeling as though it was the longest.mile.ever! Looking out over the bridge was like running inside of a cloud. We finally ran the entire bridge, over and back, and headed down for the final segment of the race.

We came up on a mile marker sure it was to say 9 miles, only to find I had already run 10 and was right on pace! Right then I saw Paul on the course cheering for me, I ran straight to him, almost knocking us both over with my momentum, and crushed my lips into his before staggering off to catch up with the girls. Paul snapped away with the camera and raised his fists in solidarity. For the first time I truly experienced a runner's high! I was flying, and felt like I could run forever!

Then in the final 2.5 miles, we came upon about 5 steep San Francisco style hills! All I could think of was the beginning of Full House, how the house is on that hill and you wonder how it doesn't all just slide right off. I hiked the first hill and flew down the other side, but by the second hill my high was long gone, and in its place were weights in my feet. It seemed there was not enough air in the entire city to fill my lungs as I forced myself up each hill, I tried to stop but the girls pushed me on, and after a gruesome 20 minutes Jill said we had finished the hills! I could see the finish line and from somewhere within me drew a reserve of power and ran full speed for the end. It was further away than I thought, but I could not imagine walking in after the distance I had already covered. There was no stopping now... I ran full force and as I stepped over the finish I stumbled to an awkward halt and tears threatened my eyes. I cleared them away and checked my stopwatch... 2:18!! I had finished in 2 hours and 18 minutes! I looked at Elise and told her, I think I died on the course and this is a dream! It was hysterical, I was dizzy and everything seemed surreal. Before I knew it Paul had found me and I was eating a banana and wearing my medal. In the midst of the insanity I forgot to take my official finisher's photo!! I can't believe it! But I think this sums up the extent of my experience...

After I peeled myself off the ground we found Nana and met back up with the team at the Finish Line Festival. We cheered on the full marathon finishers and then Nana took us to Sinbad's for cold Heineken, a fat grilled cheese, and a beautiful view of the bay.

Next stop Long Beach FULL marathon with the Nf Endurance Team as Team Captain! Yeah!!!!

Too Blessed to be Stressed...

2009-07-20T13:06:00.000-07:00

I did my last treadmill run today in preparation for the San Francisco half-marathon this Sunday! I am really pumped up, and despite my nagging self doubts I am anxious to attack that course. I just want to come in at or under 2:20. That is slow for most people, but I am running my own race. I did just have Cyberknife a month ago!

On my run today I threw in some hills and strides, then did plenty of stretching and core work after. I held hands with both of my kids and soaked up the warm... okay blistering hot.... sunshine as we left the gym. I love the feel of their tiny hands pressed against my palms.

I have a long day of laundry, cleaning and packing today, but am doing it with a smile, because I know tomorrow we leave for a visit with my Gramps and Diana in North Cali. Paul will join us on Friday, and the trip will culminate with the half marathon which I have dedicated to my Mom as her birthday is this week.

I feel blessed and grateful, which may make for a boring blog, but I wouldn't trade my life for anything today.

Gramps and his BFF Dave on a recent "fishing" trip!

Intent

2009-07-16T11:33:00.001-07:00

I stepped outside yesterday with the intent of running about 12 hilly miles, and was promptly slapped in the face by 90 degree weather at 6 pm. I started a slow easy jog down a flat shaded path, and just kept going until it was dark, cold, and my left knee started to click. I had covered about 10 miles. Instead of my usual feeling of accomplishment I could only focus on the fact that the flat 10 miles was incredibly difficult for me to finish, yet I want to make a PR on a hilly 13.1 mile course in just 9 days.

The longer I am a runner, and the more articles in Runner's World with women mentioning going a "slow" 8 mile clip that I read, the more I feel the strain of my own limitations rather than the joy of triumph over a difficult course. It is no longer enough for me to just finish, I want to be proud of the time on my watch as I stagger to the finish line.

These feelings of inadequacy have plagued me over the past 2 weeks, and Paul's answer was to tell me that I would probably have a very slow finish time in San Francisco because of the hills and I should prepare mentally for that. I just looked at him and said... you suck at this.

Screw a slow finish time, I am going to PR next Sunday. If I have to trash my legs in the process and spend the following week in an ice bath on oxygen and a diet of sharkees and protein shakes, well that is all the better to remind me the price you pay to reach your goals. I may not reach them as fast as others, but I will reach them.

Sicko

2009-07-15T10:22:00.000-07:00

Michael Moore is obviously a master of piecing random videos together to prove his point. I'm a liberal, and this movie was obviously biased even to me. I wasn't nodding along at his assumptions and finger-pointing, I was instead wondering at what point he would provide any real research and hard facts in his "documentary." Driving a bunch of sick 9/11 workers up to Guantanamo Bay and calling over a loudspeaker for health care does not prove anything but his famewhoring ways.

The entire movie tirades against the American healthcare industry, which is obviously as broken as our judicial system. I agree up to that point, and I also agree that the insurance companies see every health procedure as cash out of their money clips. I don't however think France, England, and Canada have these perfect Utopian societies where everyone loves each other and everything is free. (cue "We Are the World")

Yes, France has a national healthcare system and mandated paid vacation time, they also have a 45% payroll tax and a personal income tax rate up to 50% depending on your tax bracket. It's amazing what information Google can provide, I'm sure Michael Moore knows these numbers, but being that they didn't fit his agenda he didn't deign to include those facts. He spends a chunk of the movie asking random Canadians about their healthcare, and of course those random, mostly healthy people, have received adequate care in a timely matter. If he had stopped to ask someone with a chronic condition, such as NF2, he would find that Canada lacks much of the advanced technology we have here in America. Many Canadians have private insurance secondary to the national insurance which they attempt to use here in the States to receive more modern treatments.

I knew before sitting down to this movie that our healthcare system was broken, my own Mother was denied for necessary procedures multiple times by her HMO. I also knew that sometimes, the system works. Last month my neurologist suggested radiation therapy, and I chose to see another neurologist for a second opinion and then treatment at one of the leading medical universities in the country. I did not pay anything out of pocket, and have America to thank for that. Sometimes, our system isn't so bad, and when it works, we get the most advanced technology there is. On the other hand I have a friend Holly, who's medi-caid wont cover an Auditory Brainstem Implant or a promising chemo drug, even though she is already blind and facing complete deafness. (She has been forced to begin saving money for her own treatment, and has written a book which you can purchase in support here.)

So while I will continue to support the idea of Universal Healthcare for all Americans, I am just unsure of how Michael Moore having Cuban firefighters hug crying 9/11 workers has anything to do with that reality.

JTs Annual Neuro Opthalmology Visit!

2009-07-09T11:03:00.001-07:00

On Tuesday JT finally saw the neuro opthalmologist at Children's Hospital Los Angeles. It took several months to get him in to be seen by Dr. Borchert, and I was incredibly happy with the exam and information I received.

JT and I drove the hour long trip to Los Angeles on the same day as the Michael Jackson memorial, which of course was only a few miles away from the hospital. I was so worried about traffic, but that turned out to be unecessary. As we drove JT asked me if Michael was a boy or a girl. When I told him he was a boy, he said well then why did he look like a girl? How do I answer that?

So we reached the hospital and JT was a bit tense, he hates having his eyes examined, especially having them dilated. So of course I was tense as well and in full Momma Bear mode. The nurse who took us back profusely apologized for our relatively short wait, everyone was helpful and friendly. They took a full history on JT and communicated with me by typing on a computer in the room.

Dr. Borchert came in after a couple of hours and did not really speak to me until after JT had been examined, dilated, and then examined again. JT seemed to like him, and did not struggle with the drops at all this time! I was so proud of him, he took it like a champ. After the doctor and the residents shadowing him each peered into JTs eyes, he picked up a pen and wrote, and what he wrote in 4 minutes if more information than I have ever gotten in the last 3 years of biannual vision exams JT has had...

In JT's left eye is what appears to be a very small tumor called an astrocytic hamartoma. Dr. Borchert has seen these commonly in his NF2 patients. For now, it is not affecting his vision and is very small. It needs to be monitored as it could potentially grow.

JT has been legally blind in his right eye, possibly since birth. We call it his "bad eye" and he tells me it is broken all the time. Dr. Borchert is the first doctor to tell me he has what is called a combined hamartoma of the retina and RPE (retinal pigment epithelium.) This is incredibly rare, even in NF2. The rarity comes from the involvement of the retina as well as the epithelium from what I understood on Google! If you look closely at the photo in the center of the eye, you will see a large grey mass taking up most of JT's retina. It will stay the same size his entire life and continue to block 80% of his retina as it has since birth.

This seems like a lot of information, but technically it is just details on what I already knew. Neither lesion has grown and JT has adjusted very well to having limited vision.