Why I Run

I was recently asked to submit a blog post for the NF Endurance Team entitled "Why I Run." My response was posted today on the official team blog! Below is the complete text of the blog, the NFET Blog had to be edited for space, and it was edited by Emily over at CTF who I want to hire as my personal professional editor because she did a fabulous job!

I don’t remember a time when I did not know what Neurofibromatosis is. My earliest memories are of my Grandmother and Uncle in hospital beds at my Great-grandmother’s house. I would crawl into the bed with my Grandma Norma and she would bribe me with little cookies. She couldn’t hear me and was so skinny, but had the most beautiful Colombian accent. My Uncle was only 25 but as a child I thought he must be older than my grandfather, his crooked smile and patched eye only added to his character. By the time I was 7 they had both passed, and all I had were photos that still hang on my walls, fading with time.

My memories of my mother are much more complicated and expansive. As a child I watched in awe when she dressed and did her makeup, she was vain and beautiful. As a teenager I averted my gaze in fear as I helped her dress, her entire spine mottled by layers of thick scars across a back that was hunched over from being cut open countless times. The makeup was long discarded, her face drooped in uneven frowns, her eyes unable to produce the tears she so needed to release. 10 years. In 10 years NF2 took an amazing, vibrant, and crazy woman, and robbed her of her vitality, beauty and purpose. I assumed the same would happen to me. Every surgery, every scar, every tumor, I would one day relive and call my own. I vowed to live fast and die young, throwing sand in the face of NF2 and taking away its power. I had surgery after surgery and began to lose things I always knew I would. I was numb and in pain at the same time, I saw no other way to exist. My son JT was born and I knew he had NF2. It was confirmed when we found out he was blind in one eye from a tumor. I had more surgery, and then became completely Deaf. Soon after, my mom passed away. I was alone and surrounded by hearing people who only seemed to care about trivial things. I joined the support group my Mom had always leaned on, the NF2 Crew. I met other people going through the same things, and much worse. People who were still going to school, working, and accomplishing things without using NF2 as an excuse. I knew things had to change.

Then, I discovered running and the NF Endurance Team. An entire group of people with the same concerns and fears I had who were fighting back and inspiring others to do the same. My first event was the Long Beach ½ marathon in 2008. As the race started and people began to move forward I thought back on my journey. Each mile was another memory to embrace and leave behind, another NF friend I had met, or even lost. I proudly wore my bright yellow singlet, and crossed the finish line into the arms of my husband. I had accomplished something concrete by raising money for CTF, but I had gained so much more along the way… acceptance, friendship, and purpose.I run because it helps me to release the pain, I run because I know my lost loved ones are proud, I run to show others that you can overcome anything, but mostly I run because I can, and I never ever want to forget that again.

Never Give Up Hope.

Kale Hummus Bites

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

Hummus:

in food processor combine:

3 drained cans of garbanzo beans (chick peas)

3 tablespoons minced garlic

juice of 2-3 lemons

2 tsp sea salt

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

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

Kale Chips:

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

Plating:

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

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

Just keep moving...

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

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

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

*Never Give Up*

Happy Holidays!

Make a Smilebox photobook

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.

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!

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*