Wednesday, December 9, 2009

So Now What??

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

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

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

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

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

Tuesday, December 8, 2009

Attempted Follow Up?

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

Monday, December 7, 2009

ER Trip for Tumor Swelling

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

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

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

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

*Never Give Up*

Thursday, November 19, 2009

Evil is Relative

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

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

Thursday, November 12, 2009

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.

Friday, October 23, 2009

NIH Results

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

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

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

Tuesday, October 13, 2009

Fall out...

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

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

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

Monday, October 12, 2009

26.2

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

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

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

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

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

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

Thank you to everyone who came out to support me!


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

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

Tuesday, October 6, 2009

The Examined Life

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

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

Sunday, October 4, 2009

Costume Benefit a Success!

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

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



Bebu Moto Moto 433

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

D-A-R-C-I lol


Fred & Willie with Miena and I

My BFF Adria as Erykah Badu!

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



Jarrod, Corey, Paul and Anthony



Wednesday, September 30, 2009

Back to Basics

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

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

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

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

Tuesday, September 22, 2009

Live to Run Another Day

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

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

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

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

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

Friday, September 18, 2009

The Knee Plan

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

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

Monday, September 14, 2009

10 Signs You're a Fabulous Running Mommy!

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

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

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

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

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

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

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

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

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

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

Saturday, September 12, 2009

I will...

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

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

*NEVER GIVE UP*

Tuesday, September 8, 2009

5 weeks to 26.2!

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

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

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

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

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

Monday, August 31, 2009

Food Labels

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

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

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

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

Friday, August 21, 2009

Longest.Run.Ever.

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



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



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

Tuesday, August 18, 2009

Guilty?

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

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

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

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

Sunday, August 9, 2009

Donut Day

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

Thursday, August 6, 2009

End of an Era

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

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

Thursday, July 30, 2009

Daddy's Home

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

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

Happy 5 Year Anniversary Bebu!!!

Wednesday, July 29, 2009

For Mom, In Heaven

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


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

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

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

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

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


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

Tuesday, July 28, 2009

San Francisco Half Marathon!

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

Paul drove up from Santa Barbara Friday, and we spent Saturday at the Health expo and walking around the city a bit. My Gramps owned an elevator repair company in SF for years, and as a child I would spend a week or two each year with him. He would take me with him to work, a perk of being the boss, and let me terrorize his secretaries all day with my constant pleas for attention. SF has it's own vibe, as though it exists on a separate wavelength, and I always enjoy a chance to visit. We headed back across the bay to the NF Endurance Team dinner where we were able to break bread with others who have stood up to fight against NF. We all hugged tightly at the end of the night, unsure of if we would find each other amidst the mass of runners the next morning...
4:30 AM, bright and early Sunday morning, I dragged myself out of bed and growled at Paul a bit before shaking off the remnants of a half-nights sleep and lacing up my trusty running shoes. I pulled my black hair into tight pigtails and smeared sunblock on my makeup-free face. Runners don't need makeup. Ok... maybe just a touch of water-proof mascara!


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

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

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

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

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



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

Monday, July 20, 2009

Too Blessed to be Stressed...

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

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

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

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


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

Thursday, July 16, 2009

Intent

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

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

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

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

Wednesday, July 15, 2009

Sicko

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

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

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

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

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


Sicko Pictures, Images and Photos

Thursday, July 9, 2009

JTs Annual Neuro Opthalmology Visit!

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

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

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

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


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


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

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



Monday, June 29, 2009

Green Smoothies!

I recently read Green for Life by Victoria Boutenko I was intrigued by the idea of ingesting blended greens. The premise is that if you study nature, specifically chimpanzees who are genetically simiar to us humans, you would see them digesting a very large amount of greens over each day. Greens are dark leafy vegetables, such as spinach, kale, collards, parsley and many more. The book explains that greens are so different from other vegetables, that they should be their own food group as high up on the food pyramid as any other major nutrient. Well that sounded great, I mean I'll just sit and eat 2 pounds of salad everyday right? The reason people don't get enough green is because it seems so unattainable and gross. Now what Green for Life introduces is the Green Smoothie! You can read the whole book for a lot more information, but what I took from it was get all the greens you need for a day and place them in a high-tech blender, then add a bunch of fruit to overpower the taste of the greens and blend away. I was skeptic at best, these industrial blenders run about $400. Then I found Green Smoothie Girl!! I absolutely adore her site and am working on her 12 Steps right now. I'll go into that in a separate post. Through this blog I was able to read more realistic testimonials about green smoothies, and view a youtube demo of the preparation. It suddenly seemed very simple and obvious to me, and so I took the plunge and invested in a Blend Tec. When I came home from Stanford and saw it had arrived I was giddy with excitment.
The following morning I was completely prepared with spinach, apples, bananes, and a bag of frozen berries from Trader Joes. I am happy to say the smoothie tasted so good both of my kids chugged it down and asked for seconds! The Blend Tec worked like a dream, pulverizing all of the greens until all that was left was a perfectly smooth drink... you might want to call it a SMOOTHIE. HAHA yes, ok, the point is there were no chunks, and the blender succeeded at breaking up the plant cellulose making the nutrients digestible and palatable.
As the week went on I expanded my smoothies, the kids still like them but need a little bribe to finish an entire mug. I am ashamed to say I bribed my children with Luna Bars and iCarly to finish those drinks everyday!

This is my current Green Smoothie Recipe:
2 cups water
2-3 tbsp fresh pressed flax oil ($7.99 at Trader Joes)
1/3 a bag of Trader Joes Southern Greens Blend (collards, turnip, spinach and mustard greens. $2.99)
BLEND
1-2 quartered apples, including core and seeds
2 bananas
1/2 bag Trader Joes frozen mixed berries ($2.99)
1/2 bag Trader Joes pineapple tidbits ($2.99)
BLEND twice

If it's thick, add more water and blend again.
Total cost: $5 ...and it's enough to fill 2 adult and 2 childrens cups.

It's been 1 week... my stomach is a bit smaller, and my digestive system feels great! I feel more energetic and confident throughout the day. I am able to eat less at all meals because I don't feel unsatisfied, the Green Smoothie actually tastes good and makes you full! I don't recommend running right after drinking a serving, it's a heavy drink and not one you want bouncing around inside your stomach, on run days I have it for lunch post-workout instead.

If you try it let me know!

Thursday, June 25, 2009

Monday, June 22, 2009

Cyberknife Final Treatment and I'm home!

Friday morning's Cyberknife treatment was so incredibly simple I left the office just thinking "that's it?" It was almost too easy. I dozed off as the laser whirred around, targeting the tumor in my t spine we were preventatively treating. After the appointment there was nothing left to do but drive home...

I was so excited to see my babies, and they ran into my arms smelling like sweet goodness and gave me tiny little kisses allover my cheeks. Everyone kept asking me how I feel and I had to laugh because I actually feel like crap! I have the worst sinus infection and it's meant conjunctivitis, a totally stuffed nose, headaches, no energy, and a throat that is bordering on strep throat for the last several days. All I want to do is sleep... but it has absolutely nothing to do with the huge medical procedure I underwent. It's coincidence. As easy as Cyberknife was, as easy as radiating 2 tumors pressing into my spinal cord was, to come home and be knocked down by a sinus infection is just a bit ironic to me. Sometimes I just want to yell out to no one in particular... "Are you freaking kidding me!?"

So the treatment is behind me and I am free to live my life as normally as possible for another 6 months before I need updated MRIs. In that period of time I will runa marathon and go back to school, yet I know all to well how fast the time will go.

Thursday, June 18, 2009

Cyberknife Day 3, Treatment Day!

After a long day of wine tasting and general debauchery yesterday, I struggled to get to the hospital bright and early at 7am this morning. I threw on my running gear and showed up at the hospital in my adorable new running shorts and a spiffy ponytail. Then I realized I didn't have to check in until 9am and slept in the waiting room on Paul's shoulder for an hour.

The Cyberknife team had already used my MRIs and CTs to develop a treatment plan yesterday. The plan for today was to radiate the tumor pressing on my lumber spine spanning L3-L4. 10 years ago treating this tumor would have meant a major surgery, at least a week of hospital time, months of physical therapy, steroids and pain medications. Surgery after surgery like that is what really tears apart the bodies of people with NF2. It's not just the tumors, it's being cut open repeatedly to take them out. I feet blessed to be treated by radiation therapy today rather than facing a serious spine surgery in a year.

So today Dr. Adler came and had me lay down in the mold we made of my body on Tuesday which had been positioned on the bed of the Cyberknife. They made sure I was comfortable, even gave me a blanket, and told me to just rest and stay still. The Cyberknife is a huge robotic arm that rotates in increments all around the target area during the prescribed treatment time. By constantly rotating but maintaining a point of contact with the tumor the radiation is concentrated as needed, sparing the healthy surrounding tissue unecessary damage. What is surprising is just how big the head of the laser is, and that thing gets very close to your head and swings around every which way. It was interesting to watch, and after about an hour it suddenly moved back into it's starting position and turned off. Dr. Adler came in and said that's it for today! I felt absolutely no pain or discomfort at all.

I guzzled some water as we drove away from the hospital and had Paul drop me off 3 miles from the hotel. I ran back in 30mn, making good time despite having just had radiation therapy! I actually tripped at one point, but just got back up and dusted myself off, then kept on running...

Tuesday, June 16, 2009

Cyberknife Day 2

We awoke around 6am, groggy from a long nights sleep, but I was anxious to finish the day's appointments and get rid of this IV! I had slept in an awkward position all night, and the IV had blood in it. Paul assured me this was normal, but of course I needed to whine a bit to get the day started. I tried to dress but with my bionic arm was severely limited and ended up in sweats and flip flops. Try doing a full face of makeup without bending your dominant hand's arm, I am proud to say somehow I did it.

We reached the hospital bright and early and waited in the Radiation Therapy department for the nurse to beckon us. They flushed my IV and slipped in a contrast for the CT. They warned me I would feel warm and as though I was peeing on myself... seriously. I waited for it, but only tasted a slight metallic aftertaste in my throat. The doctors had me lay on a deflated foam bed outside of the CT. They connected a hose to it and it began to inflate and harden around me. Using their hands to push it tight against me and under my lower back, it inflated until it was hard and held me in one position for all further treatments. They made sure I was comfortable, and when the mold was complete they slid my enshrined body into the CT. It didn't last long enough for me to get a catnap before I was brought back out and shooed out to the waiting room.

At this point I was expecting to ditch the IV, but was told they needed another MRI for a closer look at a specific area. We took a tram with another lady also planning to have Cyberknife to the other side of the campus. There I had more contrast injected into my IV, and another MRI. At this point I was done, just tired and ready to go. As soon as the MRI was done the tech ripped off the IV tape and set me free. I almost skipped out of the waiting room, and even stole a copy of W magazine. I'll give it back! Don't judge me.

My Gramps and Diana drove down to visit us and we had a great lunch and nice glass of wine at a local steak joint. No I didn't have steak but I did enjoy the wine. I have tomorrow off while the Cybeknife team creates a treatment plan. Paul and I are going to take a much needed day trip to the Santa Clarita Valley to explore a few wineries. I never knew radiation could be so fun.

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!

Friday, June 12, 2009

Take What You Can Get...

This weekend is starting with a bang! My first nephew, Xavier, was born this morning up at Victor Valley Hospital. I was really sad to not be present for the birth as I was with my 2 nieces from Paul's brother Freddie, but Mica is sick which forced me to stay home. We'll visit tomorrow!
Sunday is my best friend Adria's Master's graduation ceremony! She really kicked ass and I am so proud of her. Straight after the party Paul and I are driving to Stanford and staying at the Crowne Plaza for a week of Cyberknife appointments and treatments. Ironically, Paul is being seen as well by a pituitary specialist while we are there. That worked out quite nicely actually. I will be blogging daily from Stanford and chronicling my experience with Cyberknife, and still plan to run a 5K after the first treatment on Thursday. Paul and I are looking forward to a week away, even if it is to have radiation therapy on 3 spine tumors! You take what you can get when you have 2 kids!

Tuesday, June 9, 2009

4 Months to 26.2

I want to sincerely thank those of you who have already donated to CTF on my Active Giving page, and really gotten the ball rolling! We have already raised $400! We have 4 more months to reach my goal of $5000 for this year. I've been going on my long runs and really focusing on training, and when I feel like I can't take another step, I remember that I am running for all of you who have supported me this entire time.

Next month, on July 26th, I will run the half marathon at the San Francisco Marathon and am excited to run across the Golden Gate bridge! San Francisco holds special meaning to me. My Gramps has lived in the Bay Area since long before I was born, and the best part of every vacation in my childhood was visiting his beautiful home and spending time with him and my Grams, and now Diana. My Gramps has been a constant source of stability in my life, and will be at the SF Marathon to cheer me on! I cannot wait to see him at the finish line. We have agreed to dedicate this run specifically to my Mom, Kari, who we tragically lost a few years ago just 3 months before her 40th birthday. She was 39 and lived in a nursing home, unable to care for her most basic needs and completely deaf. On July 22nd she would have been 44 years old. When I run on the 26th I am not just running for her, but also for my Gramps, who has suffered the loss of a wife and 2 children at the hand of NF2. Nobody should have to live through that much pain in one lifetime, and still he handles it with dignity and grace, always caring for everyone around him and wearing a smile on his face. He sets the example for me that no matter how unfortunate a circumstance, life carries on and holds happiness for us all.

CTF is making great strides in the fight against NF, and even specifically NF2. All fundraising dollars donated on my page are specifically earmarked for NF2. A specific example of how this money is used is CTF's current funding of a clinical trial testing the efficacy of a drug called Lapatanib on NF2 vestibular schwannoma. For those of you who have been on this journey with me over the years, you know it is amazing that drug therapies are now visible on the horizon for NF2 patients!

CTF has given me a focus for my energy, a way to feel as though I am really making a difference and not just waiting for this disease to take over my life. CTF is helping me to fight back, and I am asking all of you to fight back with me by donating on my Active Giving page, http://www.active.com/donate/nflongbeach2009/Olivia

Thank you for your support and *Never Give Up*
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