Hope in a Bottle

Well those of you who live in my life, as I see it, already know that I received a little bottle of hope 2 weeks ago by Fed Ex! Yes, I came home from errands with both children on my heels when Mica spotted a box on the porch. I had no idea what it was, and had to snatch it back as the minions attempted to rip it open. They watched expectantly as I ripped the box open and pulled out a plastic bag with paperwork... and a bottle of pills. I was perplexed, but then I saw the word VOTRIENT on the label and knew it was going to be a good day.

From the moment I met Dr. Barth, I knew good things would come. Through the testing, and results, and now getting such quick approval from Medicare for a drug that is not FDA approved for my specific use (it is actually used to treat kidney cancer.) Now I have been dutifully swallowing my little pills each morning, never missing a dose and "following the directions to a T." I have had no ill effects so far whatsoever! There was potential for loss of appetite, fatigue, hair loss, and headaches. So far I am only as fatigued as I usually am, no worse, and my appetite seems to have increased! (A complete coincidence and good excuse I am sure!)

We just moved into our beautiful new house with plenty of room for the kids. My family and friends have been helping so much, going out of their way to be supportive and jumping in to roll their sleeves up right along with me. I am beyond appreciative to the Universe for my current state of existence. This medication will not cure me, or even make all of my tumors stop growing and shrink. Do you know what it will do? What it has already done? It has allowed me to think that maybe, just maybe, Hope is not so unattainable after all. I already have it.

Hope Is All We Need

A few months ago I stared at an image of my brain splayed across a computer screen. As we all know by now, tumors congest every orifice and ventricle to be found. On that day I asked my neurologist to send me to a neuro oncologist to discuss what possible medicinal options I may have. (and I do not mean smoking weed!) In October 2011 I met Dr. Barth , who has treated patients in tandem with my current neurologist many times. At our consultation he had already reviewed my case and explained that he wanted to retrieve samples of tumors I had removed years ago from Hoag Hospital, and run tests on them at Clarient Laboratory to see if we could pinpoint a specific medication that may best target my own personal tumor biology.

There are many different types of tumors, derived from different types of cells, and relying on different pathways to feed themselves (from my elementary understanding!) Every person with NF2 has their own individual tumor chemistry. That is why while Gamma Knife has successfully stagnated every one of my 13 treated tumors, I have met people who did not have any response at all to the same treatment. There are over 400 different types of drugs that have the potential to stop the proliferation of tumor cells, and Dr. Barth likened trying random drugs to finding a needle in a haystack. He postulated that mapping my tumor DNA to decipher my unique tumor genetic code could lead us to a tailored medicinal assault to cut off my tumors' blood supply and theoretically starve all of them out. Now there are different types of tumors just in my own body, but Dr. Barth said it is likely that they all rely on the same pathways.

So this week I found myself in Dr. Barth's office waiting to see if he has had any luck in this ridiculously modern endeavor. Dr. Barth came in with a warm hug and then informed me that what he had to share was incredibly cutting edge, that nobody is doing this yet, that it is brand spanking new, and that I am literally his first patient and one of a handful ever to have this testing done. He then told me that the testing successfully told him which types of receptors my tumors are expressing, and with this information he has identified which medication has the best chance of potentially slowing or stopping the growth and development of tumors in my body.

Can we just have a moment of silence as we all absorb that information?

Theoretically, he has identified a medication that could SLOW THE PROGRESSION OF MY TUMOR GROWTH!!!!!!!!!

He then said he would understand if I am unwilling to try, since this is all so new, and I may not want to be a guinea pig. Are you kidding me? I was born to be a guinea pig! Einstein said that "Insanity is doing the same thing over and over and expecting different results."


My grandmother, uncle, Mom, and numerous friends and amazing people I have known have been born with NF2 and been hacked and radiated to death all in the pursuit of a tumor-free existence. They all basically became deaf, blind, paralyzed and alone, trapped in disease ridden bodies that gave out before their lives had even had a chance to start. I am willing to try absolutely anything different. Dr. Barth could tell me I may grow a third arm and I would do it!

So, the next obvious step was to ask, "What is it???" It is called Pazopanib, also known as Votrient. You all have google, so I'll let you research for yourself, but the only significantly reported side effect is diarrhea. Dr. Barth said this apologetically, to which I raised my hands in the air as to mimic the scales of justice and asked, "Brain tumors? Or diarrhea?" We all smiled in response as though the three of us in that room knew something amazing, and we did.

There is one caveat, Pazopanib is FDA approved for kidney cancer, not NF2, and insurance does not cover off-label usage of medication. I casually asked how much the medication costs out of pocket and was told $9,000 a month. A MONTH. Dr. Barth said I need to be prepared for a fight with the insurance company, and I told him I will win by any means necessary. I will write letters, appeal, file whatever papers need to be filed, and if Medicare will not approve me I will write GlaxoSmithKline ten letters a day with pictures of my children attached until they underwrite the medication.

I will get the medication, and it will slow these tumors. Bossy, aren't I?

Now, I feel the need to be realistic because a lifetime of reality has taught me that there is no such thing as an answer. Consider that: no answer is ever absolute, nothing is ever forever, and life by nature is chaos. Fairness does not exist. It is why I am not Christian, I cannot abide by a belief in judgement. Life is not fair, why would death be? Most people believe that prayers and maybe a drop of karma should make a difference, I believe that if that were so entire countries would not be famished and angry in this world. None of us know. Know what? Anything. We know nothing.

So please do not assure me this will work out. I really think that given my current situation in life I will be able to start treatment in due time. There is a chance I will not be able to, because there is always a chance. I may take the drug, have a new MRI, and find that my tumors are shriveling up and screaming a little as they melt. I will believe it when I see it. In the meantime I am haunted by that image of my brain, and every time I close my eyes I wonder if they will open again. I wonder if they will open to darkness. I wonder if I will live, and when I will die. The difference is that now I really and truly have hope. A good man once famously said that love is all we need, but I say he was a bit off. Hope is all we need.

State of the Brain Address

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

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

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

Sleep & Run

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

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

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

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

Paring Down to Basics

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:

Sign up with the NF Endurance Team and run for the cause at www.nfendurance.org

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

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

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

Blur

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

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

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

JT is not my Uncle Eric

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

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

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

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.

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.

Understanding

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

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...

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

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

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.

Escape

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...

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.

Experiencing Gamma Knife

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.