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.

***

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...

I'm Deaf, NOW WHAT!?

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

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

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

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

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

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

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

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

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

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

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

Awkward...

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.

Cyberknife Day 1

After a long drive into Palo Alto Sunday we stumbled into our hotel around midnight. The alarm went off a bit too early at 7am the next morning. We headed to Stanford University Neurosciences Center where I met with Dr. Adler who is coordinating my care during this treatment process. As always he and his nurse were incredibly friendly and helpful. He took the time to give me a full neurological exam and noted that I am doing incredibly well.

We headed to see Dr. Gibbs, the Radiation Oncologist, in the cancer center right after I consulted with Dr. Adler. Dr. Gibbs was so informative, and answered all of my questions. She stated that with Cyberknife they are seeing positive results around 85% of the time in NF2 patients. She warned me of possible side effects such as nausea and vomiting, maybe fatigue, but promised they would prescribe something to help. She went over the possible long term effects, such as damage to healthy tissue or the spinal cord, paralysis, prolonged swelling or pain. I signed away my fears and felt comfortable trusting in this team of obviously well trained doctors to treat me.

At this point I was sent to the main hospital to have MRI's taken of my spine. An IV needed to be placed to receive the contrast for both the MRI's and then the CT I would have on Tuesday. I have teeny tiny little veins, Paul and the nurse we're laughing at my pathetic vascular system as I whined that it was not my fault. The first stab was only a prick, but the nurse could not find my vein and had to dig around a bit inside my arm. Tears threatened to fall and I just held it back until finally she looked at me sadly and said she was going to have to try again. I shrieked a bit, but one look from Paul and I controlled my outburst and stayed still for the second try. After another minute of stabbing, she sighed and took that one out as well. At this point another nurse was brought in, he grabbed my arm, jabbed the needle in, and grabbed a vein the first try. I loved him, I wanted to cook dinner for him. The MRI itself was easy as always, and we headed back to the hotel around 4:30 with my IV still in place to avoid another vein hunt the following morning.

We were exhausted from the drive and a day of waiting rooms, so we gorged on Chevy's margaritas and passed out at 6, sleeping all the way through until the next morning!

Mantra

I always have mixed emotions when I set off on my long runs. It feels great to get out and escape, but as my feet leave my porch I wonder what would happen if I just ran right back inside and plopped down on the couch with a bag of doritos? As quickly as I can push the thought away it fades into the distance and I fall into the familiar rythm of a 10 minute pace. The first mile is always messy, and I suck in air as I wait at the first cross light. When the little man says to walk, I take off running, and soon my body stops screaming and just glides along. I know I am slow compared to most runners, but I run my own race, and am just thankful I am able to run at all with 5 brain tumors and 4 spine surgeries under my water belt. I take in the beautiful mountains and as it becomes challenging to meet my pace my thoughts dissolve into simple mantras. Determind... strong... run... I let my mind think only positive thoughts as I fly along the trail. Health is a necessity, but skinny is a benefit... pain is temporary but pride is forever... it's better than brain surgery... and as I struggle to the top of a hill I ask aloud, "Is that all you've got?!" As I fly down the other side the answer comes with a smile... determined... strong... run...

Looking Forward

I am officially registered as a student at Chaffey College... again. I have my AA already, but want to go back and take the classes that interested me, but were not useful toward my degree. I am nervous to sit in a classroom full of students a bit younger than I am, with a transcriptionist following me to each class setting up and typing everything being said for me. I am incredibly lucky to be able to attend classes and have a transcriptionist, but no one wants everyone to turn and stare at them on the first day of school!

I have to let the negative just fall behind me, as I always do, and look ahead to my goals. I already have taken several fashion design classes, and plan to take all of the sewing classes so I can make extra cash doing alterations and private sales. At the same time I plan on taking more ASL classes, philosophy, religion, and of course creative writing!! I think it would be great if everyone had the chance to pursue an education that includes the things that really interest them, I am so blessed to be able to, and am anxious to get started! Fall is going to be amazing, Mica will be in school in the mornings, allowing me to train for my marathon without having to leave her with a sitter. My mornings will be filled with higher learning and faster running! *Never give up hope*

Solitarily

With my husband working out of town I find myself alone for long stretches of time. During the day the kids and training keep me busy, after we all spill back into the condo and follow the usual routine, minus the part where Paul walks in and we all jump on him. I'm getting some real quality time with the kids playing Life after dinner at the table, Paul's empty chair the pink elephant in the room. At 8 my babies are tucked in tight and I face my empty living room or cold bed, unsure of what to do with myself. I try to text Paul, and get back a few flimsy messages, I give up and let him be. I stare at Facebook for a while, realizing I just don't care. I think of all the things I could be working on, fundraising, brainstorming... and settle for some Tivo time instead. At the funny parts I awkwardly laugh, feeling like I am talking to myself, and finally give up and drag myself to bed. I'm still afraid of the dark after all these years, and as each room is darkened behind me my pace quickens until I leap into our bed. I worry my deafness will cause me to sleep through the worst of emergencies. Shadows dance in our hallway, and I miss the curve of Paul's shoulders breaking my moonlight view of the creepy closet. I hug my pillow tight and sleep, what else would there be to do? Fitful, restless sleep, waking with a start only to drift back off. I wake up around 2 to find both my babies have crawled into bed with me, and along with the dog we make a warm little pile of happiness. I finally sleep a dreamless sleep.

Remnants

The day my Mom passed away I stopped at her nursing home still in shock, and walked into her room half-expecting her to be asleep in the little bed. It was neatly made with a stack of packages where her feet had once been. I glanced at her collection of photos, taped allover the small wall unit her bed was pressed up against, and saw the little ceramic pot I had made her in high school. I took it and stared at the tiny heart I had carved out of the bottom. I forced myself to just put it in my bag, and turned my attention to the packages. One held a little Blue's Clue's outfit she had obviously meant for JT. I pressed it to my chest and then we left, the only other item I took was the blanket she always draped across her legs. She was always cold.

At first remnants of my Mom were allover our apartment. The blanket, the little pot, a card she had sent, a stack of photos with her and JT sleeping, toys she had surprised him with, pajamas she had handed down to me, magazines she had finished reading. Piece by piece they disappeared, until one day I realized all that remained were the blanket, pot, and a Blue's Clue's mailbox she had been incredibly excited to order from a catalog for JT. Playing into his Blue's Clue's obsession had been her way of desperately attempting to be part of his daily life from the confines of her bed. JT has long since given up on Blue's Clue's, and when Paul suggested we give away that mailbox I gave him the Hello Kitty Deathstare until he nervously backed away.

Now several years have passed, and whole days, maybe even weeks, can pass by without the stab of pain I thought would never go away. I was right, it hasn't, but now it is dull rather than piercing and elicits only the occasional tear rather than muffled sobs. I can speak freely of her memories with a smile, and only in rare moments am I startled to realize I am crying, hastily wiping the tears I promised her I would not shed.

Last week I went through JT's old clothes I had saved and found the Blue's Clue's outfit my Mom never had the chance to watch him open. She no doubt had planned to pull out her little disposable camera, snapping pictures of his delighted cherubic smiles for her to look at when we were home and she was alone. At bedtime I pulled the pants and shirt onto Mica, proud of myself for storing them long enough to pass the magic down to my baby who never even had a chance to meet her namesake. Mica smiled and squealed "Blue's Clue's!" signing it the same way JT had as a toddler, momentarily taking me back in time, as though I would look up and see my Mom happily taking her picture too.

NF2 on House

When I sit down on Monday nights to watch House I expect to be mildly insulted and wickedly entertained. Unfortunately last night I was just shocked by the amount of ignorance spread by the writer's of the show. The episode centered around a young deaf wrestler who falls to the ground with exploding sensations in his head. After a bit of investigating he is diagnosed with "NF2 cancer" and told treatment would be relatively simple, and that afterward he may regain his hearing which he lost at age 4. Throughout the show the boy is referred to as an idiot and insulted repeatedly for being a well adjusted deaf child. At one point during a simple brain biopsy House directs Chase to put in a Cochlear Implant, without any planning or a specialist. It was actually hilarious. The boy wakes up and House is in his hospital room tuning his CI as he begins to awaken. He can immediately hear the tiniest of sounds, and within hours is asking if his speech sounds slurred as he hears his deaf girlfriend for the first time. He looks at her pitifully as she walks away. House is excused from forcing this contraption onto an unwilling patient because he "did the idiot a favor" by providing him with hearing. I expect that sort of belligerence from House, but even the other characters mirrored his viewpoint. The deaf boy was called an idiot and a moron repeatedly, and at the end when he is touched to hear his name on his Mother's voice he accepts his new gift and all is supposedly well.

I can deal with the fact that House is a fictional show, and not known for medical accuracy. How can they disregard the potential ignorance they are spreading about NF2 though? I do not have cancer, now all of my friends who watch House are probably thinking oh lord she has cancer! Should I be expecting muffin baskets? (Probably not.) When you are deafened by NF2 removing the tumors does not bring your hearing back, and may in fact also cause facial paralysis and disequilibrium. So aside from the general ignorance of NF2, the attack on Deaf Culture was nothing short of hurtful. There were not a handful of tongue in cheek remarks, the episode was a nonstop diatribe about the stupidity of Deaf people to stay hearing impaired when there are supposedly magical implants that can fix anyone. These implants rarely work on people with NF2, and I already deal with people on a daily basis who treat me with disdain and contempt, as though it's my own fault I am deaf. Thank you House for further increasing the misconceptions of deaf people, and causing all of us Deaf to turn off our TVs feeling like we just got beat up in gym class. For a show that generates millions of dollars in profit, you would think they could afford a medical fact checker, or at least a writer with enough common sense to write a witty joke without being bigoted toward an entire culture of people. The show had a chance to be a platform for the deaf, and instead reminded most of us exactly why many Deaf don't want anything to do with the hearing world.

Top 10 People I Hate at the Gym

1. The guy with the veins popping out of his neck who gets off the machine and just walks away, leaving his steroid-infested man stanky sweat in puddles on the seat. You know you are supposed to wipe that up, keep your ring worm to yourself nasty!

2. Chick on the stairmaster with hair fully styled and not at all in a ponytail... if you were actually working out you would want your hair up. Stop posing on all the equipment and get the hell out of my way before I break your nails.

3. Personal trainer who you specifically tell you want to learn the resistance machines, and then creates a "routine" for you using nothing but free weights and trainer tools in the hopes of forcing you to pay for more personal sessions. Right, because not listening is the best way to get repeat customers.

4. Weird little old dude who sits across from you, and you can feel his creepy old ass eye-molesting you while you press. Oddly, he doesn't do anything but sit on random machines!

5. Girl who floats in on her implants... in any other situation I don't care, but how the hell am I supposed to focus and sweat when you freaking cheat your way to a perfect body then come in here acting like you bench pressed those things out of your pecs??

6. Bad ass bebe kid trying to hit my innocent child in the daycare and teach him bad words. What is your problem? Why are you so angry? I know it smells like feet in here, and your Mom is off flirting with weird little old dude, but damn suck it up and leave my baby alone!

7. Person with a blue tooth on while working out... you are not that important and none of us are fooled. If you had such a demanding job why is your ass at the gym on a Monday morning? So not only are you unemployed, you go to the gym and pretend to work out, because sweat would completely ruin that fugly thing you've hot glued to your ear. God help you if its bedazzled.

8. 16 year old sitting on a machine text messaging, how did you get a membership? Don't they have age requirements here? Shouldn't you be in the daycare waiting for your Mom? Get the hell off the machine, just because their isn't a line doesn't mean I'm not waiting for it to open up from across the room. We all know your generation can't be expected to understand actual human relations, so go home and google some Tae Bo on You Tube and frigging get out of my way.

9. Old tiny asian lady with the huge bush walking around naked in the locker room. Cover your muff, it's scaring me.

10. Girl in jeans and makeup on the sit up machine, are you really that broke or just tacky? I'm guessing tacky since you could afford the membership. Or maybe this is a free trial which would explain why I probably will never see you here again, so get out of my way.

*Weird deaf girl who sits in judgement of everyone and never moves when you say excuse me!*

Mixology

I stepped out of my warm cozy condo into the crisp air this morning and jogged my way to the front of the complex. My legs felt heavy, but I pushed forward, playing out my mile splits in my head. Running towards the mountains and focusing on hill training kept my mind absorbed until I hit the running trail and had a 4 mile flat segment to cover. My thoughts kept bouncing around, finally landing on an old song that sounds slightly off tune in my head. After having been deaf for 6 years, I am stuck replaying the same mix tape to myself repeatedly. Like a summer hit that makes you change the station by Christmas, but there is nothing else to hear. Alanis, Aaliyah, Britney... The Doors, Joplin, Creedence... my old favorites are on constant rotation. The trail seemed to stretch before me for an eternity, droplets of sweat beaded along my hair as my breath quickened. Running can just be so boring without any external entertainment! So as I passed Archibald and felt my muscles warm up, I cleared my throat and started singing out loud. My pace matched the beat as I belted out Gloria by the Doors in my best warbled Jim Morrison impression. Suddenly a smile caught my lips and the path began to pass by more quickly. I repressed the urge to stop and do a dork dance as I belted out Waterfalls by TLC and rapped Left Eye's part with a bounce in my step. As I waited for traffic to pass at a light I started into a heartwrenching performance of You Oughta Know, only slightly lowering my volume when passed by a few kids on bikes. The final steep descent to the top of Day Creek inspired a bit of I Believe I Can Fly by R Kelly, and as I pounded my way to the top I was finally silenced. I looked out over the little city I have lived in all my life, and absorbed the sense of accomplishment for a minute before heading back downhill, humming We Are the Champions without a shred of irony...

What is Cyber Knife?

Cyber Knife is a robotic radiosurgery system utilized for treatment of both cancerous and non-cancerous tumors throughout the body. It is extremely accurate and able to pinpoint the exact location of the targeted tumor with the assistance of MRIs and a technician's guidance. My neurologist, Dr. Duma, performs neurosurgery, Gamma Knife, Proton Beam, and Cyber Knife personally. I know when he chooses a treatment for me he is making the best choice for my individual needs and is not limited to specific types of surgery. A typical Cyber Knife treatment starts with a foam molding of your body being made. You are given an MRI in that mold, and the doctors use that information to form a treatment plan. Once the doctors are ready to begin you settle into the mold which is actually quite comfy. According to the Cyber Knife website, treatment lasts between 30 and 90 minutes depending on tumor size and location. During treatment the robotic arm rotates all around the patient, painlessly zapping the target with an invisible beam of radiation. Sometimes treatment is done over a period of several days, spreading out the amount of radiation delivered to the tumor in order to spare the healthy cells surrounding the area from radiation damage.

I have had Cyber Knife one time with Dr. Adler at Stanford who is actually the creator of the Cyber Knife. My treatment lasted one day, and my only side effects were a bit of fatigue and nausea for 1 week. The tumor was located in my upper C spine and visibly stopped growing at my 6 month follow-up MRI. This time I will be treated in Vista by my own neurologist, Dr. Duma. He insists there are no ill side effects, and that my prior experience of fatigue and nausea were due to the stress and anxiety surrounding the process. The Cyber Knife website states that patients may experience minimal side effects for the first week or two. I am opting to believe I will feel perfectly fine, but do not think I am so weak as to have created my symptoms as a stress response the first time around. Regardless, the possibility of being a bit tired for a week is nothing compared to the fears I would be facing if I was having regular invasive surgery. It amazes me that just 15 years ago my Mom had no options, and today I may have 3 tumors treated in a day, 2 of which are only being treated "just because we may as well while we are there!" Without radiosurgery I would have had at least 3 or 4 brain surgeries by now, and am not sure my body would have even been able to handle that. If Dr. Duma decides to radiate all 3 of my spine tumors, I will not have a single active tumor in my body!

I feel so blessed and grateful to have these treatment options available to me and to be under such great care. I only wish all people with NF2 were able to recieve such a high level of patient care, and pray for the day in which we truly have universal health care.

MRI Results!

Yesterday Paul and I headed to Hoag Hospital in Newport Beach for a check up with my favorite neurologist. We slowly inched down the freeway, passing a van crumbled on the side of the highway while a big rig sat nearby unscathed. I tried to forget the images my eyes had briefly absorbed when I checked the MRI disk on my computer to be sure it held all the correct exams. I pushed the anxiety away and left it on the highway with the crumbled van...

We were greeted by a new nurse who was so friendly I was immediately at ease. He asked questions about my deafness I had actually never considered before. It was refreshing to meet an inquisitive nurse rather than being shoved down the cattle line. He is a runner as well so of course there was an immedaite warmth to our conversation, a shared knowledge of the intimate moments fighting the pavement.

Dr. Duma came in and we got down to business...

I have had 5 tumors radiated with Gamma Knife at different times over the last 7 years. He said all are still smaller than when they were treated, none are growing back. I have no new tumors in my brain, and as he said, my brain looks fantastic.

My C spine and T spine have no change. I have 2 small tumors in the T spine which when compared with a scan in late 2006 show no change since then. The main one is at T12-L1 and is 17mm.

My L spine has 1 tumor at L 3-4 which after measuring he realized has grown a tiny bit and is 11mm. That is the only growth I have had in 2 years, and 2 years ago it was about 7mm.

My Grandma, Mom, and I all followed the same tumor history, which doctors say is impossible, but tell that to our MRIs. We all present with a Tspine tumor pre-puberty, and vestibular schwannoma (VS) in our mid teens, followed by a LOT of spine tumors throughout our 20s. My Mom and Grandma both had so many brain tumors grow in their 30's they became uncountable and died about age 40. I am the first one to manage to slow down any growth at all, beginning with the fact that in 2 years I have not had 1 new spine or brain tumor develop. My neurologist said that obviously "something is working," and agrees I can continue on Bio30. Of course he cannot actually confirm the efficacy of Bio30, being that this "trial" is self administered and has too many variables, such as the fact that I am not pubescent, pregnant, lactating, or on birth control for the first time since I was 14.

The tumor in my L spine that has grown a tiny bit is candidate for Cyber Knife now, but if it grows even a tiny bit more it will be too large to treat, so I am opting to have it treated with Cyber Knife now and avoid having an unavoidable surgery 3 years down the road. Dr. Duma said if it is going to be treated with CK it needs to be done now, so we are starting the insurance process. I asked if while he was in there he could get the other 2 small ones, and he agreed that is a good idea but needs to discuss it with his team and will let me know. If in fact he is able to treat all 3, and the CK is a success, which I have no doubt it will be in Dr. Duma's capable hands, then for the first time in years I will not have any active growing tumors! I am not even sure how that would feel. I am constantly blocking out the ominous drum beat of approaching death, and to finally outrun it if only momentarily would be amazing.

I also asked him about all of these trial drugs we are reading about so much in the news. He has "tumor board" today with his team, and is going to specifically begin a dialogue about cancer drugs and NF2 with his Neuro Oncologists. At this point, being that I am doing so well, he said that any form of chemo would be more detrimental to my health then the actual disease. He is still going to look into it, just so I know my options in the future if need be.

I plan to get the CyberKnife treatment out of the way and just keep running! Paul thought it was ridiculous that my only concern was if I could continue to run, but the ability to run is the standard I hold my health to. I plan to run as long as I am able, and if the time comes when I cannot then I will cheer for those who can!

*I will explain CyberKnife tomorrow*

MRI Dreams

It's 8 am and I just woke up, have been asleep since 4 pm yesterday. My online mommy friends comment how lucky I am and I murmur a smile as the grogginess fogs my thoughts. My body feels slow, like a grape falling through not quite set jello. I forced myself to run yesterday, and my feet carried me across hot pavement until I doubled over the bright green spring grass, wretching the last bit of home made pumpkin bread unsettled by my awkward gait. I took a swish of water and kept going, forcing my eyes to ignore the hot burning rays of sun creating criss cross patterns on the sidewalk between the shadows of leaves. I ran straight to the gym and went through all the usual motions and repetitions, 3 sets of 12 on every machine I have figured out, yoga, more sit ups, and finished just as Paul pulled up in the van. I plopped down inside, sweaty, out of breath, and nodded off on the 3 mile drive that felt so far just an hour ago. Just a quick shower later and I found myself in the MRI room. Has it been 6 months already, or have the last 6 been a dream and I have never left to begin with? 2 muscle relaxers later that MRI bed is like a womb, I floated in and out of consciousness until finally I emerged and walked back out into the harsh light, again into the van and whisked away home. Did I ever leave the van or was the MRI a dream? I tried to humor the kids, asking questions about their day, only to find myself sent to bed and falling into a deep sleep. I woke suddenly and it was pitch black, it couldn't possibly be 2am? I tossed and turned the remainder of the night, finally rising as the sun creeped through my blinds and tossed slivers of warmth across my pillow. How can I be so tired when I have been dreaming since 12pm yesterday? Now I have to go act as if I am fully present and get through another day, Mica smiles will help, and JT hugs when I get him from school. MRI results later this week, and then I can pretend to be whole for an entire 6 months...

Continuing Bio30

I have been on Propolis Bio30 for 18 months now. While following the ongoing discussions revolving around the treatment on Trial Talk mailing list, I found that my blog on propolis is listed under the Bio30 publications! I feel so legitimate. I have actually been reconsidering continuing the Bio30 Propolis. In the time I have been taking it I have had no tumor growth, however I am unsure if I believe it is due to the propolis, or simply because I am not pubescent, pregnant, nursing or on birth control for the first time since age 13. Hormones are intricately connected to tumor growth. I spoke with Dr. Adler from Stanford University, who actually created the Cyber Knife, this week. I adore him, he has a wonderful personality and a fierce intelligence. He told me he is skeptical I am "getting anything for my money" with Bio30. So the last few days I have mulled it over, I would hate to stop taking it and then have one of my many tumors try to grow freakishly large and cause irreperable damage. If I did stop, and the tumors then started growing, I would have really good evidence that it does work. Then I can just begin therapy again, and know JT can take it at age 10. I am not sure if that is a risk I should take. My tumors have been stable for longer than they have ever been. Long enough that most of my new friends have no true idea of how sick I get, or why I run. I have rebuilt my life since the last surgery and losing the rest of my hearing. I have a great group of girlfriends, my running, I've gotten more fit and healthy then I thought possible for myself. I think it is best to play it safe, and continue the propolis, and just be grateful I am even able to try anything at all.

Today is the first day of my new weekly training schedule! I have to get my legs a lot stronger if they are going to carry me 26.2 miles in October. Since my next race is several months away, for the next month I am going to focus on weight training as much as I can without injury, weight training is my favorite part of my routine! It goes by fast with obvious reward for my efforts. I've always had chicken legs, to the point that I look ridiculous trying to wear tennis shoes with shorts, but I have gained a bit of muscle over the last year and plan on really defining them over the next 2 months. Since I met my first goal of 2009, to run a 5K in under 30mn, I am on to the next... be in a bikini by summer! Today I woke up and bright sun crept through my blinds, as I realized the weather is warming up it also occured to me that I have 3 months to meet that goal! I refuse to diet, choosing instead to try to eat in moderation, and cook good healthy foods. I really feel that if I don't binge, and stick to this training regimen, I will be shopping far away from the Mommy-One-Pieces I have learned to hide in. Not that my 1 piece isn't cute!!

Don't even ask!

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

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

Lacking the Ability to Over-Hear

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

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

NBC Pioneers Online Captioning!

Have you ever missed your favorite show and assumed you could just catch it later on the internet? Being deaf that is not possible, with all of the amazing technology available, major networks have claimed they just don't have the capabilities to offer captions for there online viewers. We have all known for a long time that is just ridiculous, of course they have the capability, they just didn't care! Now at long last NBC has stepped forward as the first major network to offer captioning on their website! Yes! You can watch full episodes of Heroes, 30 Rock and even Last Comic Standing WITH subtitles! Who is next? Come on ABC, step it up, we're waiting!!!

Read all about it here: http://www.tvjots.com/2007/09/nbc-gets-with-program-and-offers.html