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!

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!

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*

Revolutionary Road *spoilers*

Health, a roof over your head, food on the table, a solid job... what more could anyone ask for? Apparently for much of the middle class that is just not enough. They are "unhappy" and depressed, they want to escape, waste, and spend their way to happiness. People close to me know I have no tolerance for those who create their own drama. As we say in my house, even to my 3 year old, suck it up! Last night I was so excited to watch Revolutionary Road. Kate and Leo, reunited in a 50's period piece exploring the ups and downs of a classic pre-feminism marriage? I was sold at the first preview, as Leo threw her against a wall and passionately kissed her. Unfortunately, the previews were the best part of the film. Well, the previews and the acting. Kate and Leo play affluent, upper middle class parents of 2 beautiful young girls, and spend the entire movie whining about not being happy and wanting to escape to Paris. Apparently, as Kate says, they used to have a secret, that they were better than everybody, but then they found out they were just like everyone else.... oh boo hoo, cry me a f*cking river. The entire film was a cynical look at marriage which strived to prove that life is not real if you are married in the suburbs. Tell that to the other 90% of the world who do not exist in our bubble, and you'll get a lot more than a stone thrown at you. This movie represented to me everything wrong with our society. People making over 100 grand a year, still in debt. People getting divorced because its "just not working." Antidepressants with martini chasers. Separate vacations, and spending the family savings on "finding yourself." You want to find yourself, try looking in a mirror. Like a 5 year old who's parents never said no, spoiled middle aged adults tantrum their way through life with a shrink who encourages them to cry while simultaneously collecting from the insurance company. The movie ended with a suicide and a tear, and the only emotion I could muster was disgust for a silly little woman with a perfectly healthy body throwing it away on self-inflicted drama. Tonight when I do my nightly prayers, and again effusively thank God for my blessed life and beautiful family, I am also going to give thanks for the perspective that NF2 has given me. I would rather be sick and grateful, then healthy and deluded.

Happy 3rd Birthday Mica!

Mica turns 3 today! I cannot believe it has been 3 years since my precious crazy Mica Stinka came into my life. When I was pregnant, I was sure the name would be Isabella Michelle. The moment she was born Paul and I both looked at her and just said she looks nothing like a Bella! Micaela Estelle, at first Paul was skeptical, but then I said we can call her MICA and he was sold. She has been precocious from the start, growling at her visiting guests and rolling her eyes before she could walk. She has no patience for stupidity, and pushes her way around with a little Shirley Temple stomp. She still sucks her thumb, I hate to admit, and when I tell her to get it out of her mouth she laughs mischieviously at me as she wiggles it around. She tells Paul, "You're not funny Daddy," and looks off into the air as though she doesn't hear me when I ask her to do anything not on her agenda. Every night she demands a bedtime story, then we sing songs from Cinderella, and lately she has been singing the last lines... a dweem that you wish, will... come... twuuuuuuu. She is stubborn and adorable, a little ball of fire. She is perfect to me, and I cannot imagine my life without my little princess, she is my dream come true.

Musings of a 6 Year Old

JT is seriously getting theological on me. Today as we walked home from school I commented to him that he has been behaving so much better the last few weeks of school. The teacher's complaints have stopped, he has been finishing all of his work without (too much) whining. I am very proud of him. I asked him, what changed? He said he prayed to God to make him a good boy. I was so flabbergasted... yes I said flabbergasted! I never taught him to pray, and was immediately ashamed that I had not fostered his obviously natural spiritual inclination. So I told him I pray every night, and he said that he does too, as he falls asleep. I asked him what he prays, he said he prays for the morning to come, and for a plasma TV for his room... I tried so hard not to laugh, but will definitely be encouraging this newfound good habit of his.

Over dinner he told me he doesn't want me to get old and die. I told him, everyone has to be born, and everyone has to die, but I wont die for a very very long time, so eat your burrito. It didn't really work this time, worry etched his smooth brown face. He said he doesn't want to die either, and where will he go? I said I don't know, nobody knows, but I think you will get to go see God. That mollified him a bit. A moment later he asked when I was a baby, where was he? I said he didn't exist at the time. He could not grasp that. I finally gave in a bit and told him he was in my heart. I hate giving him unrealistic answers to honest questions, but he really had me backed into a corner. I can't exactly tell a 6 year old all about life and death. It would be so much easier if we were Christian, or Muslim, or Jewish... really any religion with specific answers to his questions, but I refuse to give him religion as a crutch. I'd rather give him sentimental cliches, such as being in my heart, and when he is old enough I hope he will appreciate that I never chose his spiritual path for him.

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...