Wednesday, June 23, 2010

Uncle Ed

The world lost a good man yesterday. I came in from a run today and a serious Paul pulled me into our bedroom with bad news. It seems my Gramps and cousin Kenny had both called to let us know my Uncle Ed passed away yesterday after suffering another heart attack. I knew as soon as Paul said... "Your Uncle..." what was about to come. A flurry of images flew through my mind. The bear hugs he always gave. The dollar bills he would slip to me for each A on my report card, no words to explain, just a smile and a wink. His beautiful house in Hesperia with the huge yard, and how he would encourage me to run wild in his own little chunk of the desert. His faith in God, and the lively intelligent debates we would have over lunch in his kitchen. His 50th wedding anniversary party to my Aunt Cecilia... My Aunt Cecilia in their home, without him. My heart cracked and the tears crept down my sweaty face. My Aunt, one of the most beautiful souls I've ever know. A strong woman who stood behind my Uncle for over 50 years and would now have to walk without him. Her faith will carry her as it always has.

Aunt Cecilia and I last month, this woman is around 80 and still fit and gorgeous!

If there is anything I learned from my Uncle Ed, it is how a man who loves God carries himself. I may not have agreed with everything that his religion entailed, but I respected the dedication with which he followed it. He and my Aunt have been faithful Jehovah's Witnesses since before I was born. I've heard that in his younger years my Uncle was a bit more stubborn, but with age he settled into himself and showed me nothing but respect for my beliefs. We could sit and talk about anything... religion, politics, race... all three mixed together as they often are. He followed his interpretation of the bible as closely as he could, with my Aunt's gentle help of course. A God who created flowers and the color blue could not help but love a man like my Uncle. If he is not with God right now, then surely I do not know God.

I am blessed to have had him as my Uncle, blessed to have had the chance to learn from him and be a part of his life. I will miss him. I already do.

JT, Mica & Uncle Ed

Tuesday, June 22, 2010

A Leader is a Dealer in Hope

I cannot believe this year is flying by so fast! Before you know it the Long Beach Marathon will be upon us on Oct 17th. This year I am once again serving as Team Captain for the Mighty NF Endurance Team! I just built my new fundraising page including a spiffy new photo collage for this year's event and wanted to share it with you all, its at...

(You can always reach my fundraising page my clicking the collage on the left as well!)

I have had my heart broken too many times by this disorder. As you all know I have lost 3 family members, but I have also lost friends. Too many over the years to count. I often receive emails from all over the country, even the world, asking my advice as someone who has had this disorder in their family for so long. I do my best, and stay active in the community, knowing that these people I grow to love will most likely lose the battle much too young. Friends who are my age and just do not wake up one day. I am tired of waking up to find another friend has died, another friend has been told there is no more to be done for them, another friend cannot walk, or hear, and they live so far I cannot even be there to offer a hug. What I can do is tell their stories. By informing more people about NF2 we encourage more donations and raise more money for research. The best way I know how to do that is to run, and so I do the only thing I can.

I am setting a goal of raising $5000 this year. I know it sounds like a lot, but I truly believe if I put my mind to it I can achieve this goal. There are actual clinical trials for drugs that can potentially STOP TUMOR GROWTH going on right now! CTF is the largest private funder for NF research, so by running with them I feel I am doing the one thing I can to fight back. I have to do something, because doing nothing is just not an option anymore. I am asking all my friends and family to join me by donating any amount that you can. Every dollar counts, and together we make a strong team! Together we can actually make a difference and fight back!

Thank you so much to each of you who has taken the time to donate, volunteer, or just offer friendly support! Please feel free to share this link with as many people as you want, there is power in our numbers!

Friday, June 11, 2010

Til Monday...

One week blends into the next as I wait for the sun to realize its summer vacation. Gamma Knife recovery is a simple one, come home and wait for my head to not feel like its in a vise. Easy enough. The kids wander around the house aimlessly, sucking down countless popsicles and passing out for random nap times. All week I have rotated between couch surfing, leaving the house for small errands, and half heartedly cleaning up the messes Paul and the kids leave in piles for me to find. They have taken good care of me, Paul making me a drink while JT cleans up after Mica and Mica tries to tuck me in and bring the puppy to me for a kiss. Its been an oddly comforting time, and I've been able to settle into it and enjoy it while it lasts, knowing full well that come Monday, its back to kicking ass and taking names!

I've avoided eye contact with my Runner's World magazine, knowing if I flipped through it I'd want to lace up for just a quick jog. Instead I'm taking this entire week to do absolutely nothing! My headache has subsided almost completely as of today, yet still I've spent it in sweats reading and cuddling as time ticks by with no accomplishments to claim. My energy is building back up and just waiting to be released on my To Do list, so the sun better come up Monday morning because I have got things to do people! Summer means hot hilly runs, recruiting, fundraising and planning for Long Beach, extra ab reps, laps in the pool, and homeschooling the kids 3 times a week. But not today... today I make the list, and Monday I smash it.

Tuesday, June 8, 2010

The Demise of Mo Fo and his Evil Twin

After a night of tossing and turning, then finally dozing off late in the night, I woke with a start just after 5am yesterday. Paul and I quickly and silently dressed, I kissed my babies good bye and slipped out the door past Sheila on my couch. Paul drove the 45 minutes down to Hoag Hospital. I tried to catch a few more minutes of sleep but my eyes just stayed open, staring out at the sea of red brake lights in the morning traffic. Paul reached over to squeeze my hand, and all too suddenly we had pulled up to the recently built Advanced Technology Center at Hoag Hospital.

The ATC is a shiny new building at Hoag that houses a newer version of the Gamma Knife called the Perfection, as well as an MRI machine and state of the art exam rooms. On all 3 of my previous Gamma Knife treatments I had been wheeled back and forth around the main hospital for different parts, this time everything was within 1 small building and I knew almost every staff member. From my perch on the exam table I could see a reflection of the hallway, and soon I saw what could only be the Tish clicking her way in with my Dad right on her heels. Since I was a child and would accompany my Mom to appointments while my Dad worked, when my Dad showed up I would always feel a sense of relief. A deep trust in my soul that will always believe once my Daddy is here, everything will be okay. I realized I felt that way as soon as I saw the Tish as well.

Once I checked in things began to move quickly. My nurse for the morning, Tom, is also a runner and it was a great distraction to chat about running and different races we have done. He set me up for an IV and I felt the familiar urge to get up and run far away to a land with no needles. This time, I resolved to just breathe, and the IV went in without any mistakes or digging. Dr. Hseih, the anesthesiologist, came in and informed me of all the usual risks... that he was going to inject me with a chemical and I might never wake up, and asked me to sign a paper saying that was just fine with me. I signed and reminded him that during my last treatment I woke up to soon, he promised to work on that. I should really hope so, I thought. Dr. Duma came in to place the head-frame, and my family was asked to wait in the other room. Dr. Hseih appeared at my side and began to inject it into my IV, I felt the familiar panic at my chest and wanted to struggle, but reminded myself of the nightmares I've had in the past and instead just took a deep breath and let go... While I slept Dr. Duma used a power drill to screw a metal halo onto my head at 4 different points. 2 on my forehead, and 2 in the back of my skull.

What felt like moments later my eyes snapped open and I could see past the metal frame on my head into an empty room. I had only been out for 20 minutes, and only felt slightly groggy. My family came back and gave me those big doe-eyed looks and supportive smiles, then went back to their conversation. I am surrounded by people who are used to seeing me be cut open, and on the scale of things Gamma Knife doesn't even warrant a Get Well card anymore! Soon another doctor came in and took some measurements, he kept grabbing the head frame and moving it a bit roughly, my eyes narrowed and I felt the words in my throat but instead I just closed my eyes and waited until he was through. I was then taken for a quick MRI right down the hall before being returned to the exam room again to wait while the doctors set up the treatment plan. The head-frame was squeezing my head like a vice, but I knew that was the only way to be sure the treatment was precise and well worth the pain.

Finally it was time for the actual treatment, we were led like a procession down the hall just one more door to the Gamma Knife room. At the last minute I stopped for the restroom and pulled Paul in with me. Things were getting way too serious, so I made him pull out his cell and record me doing a little booty dork dance, rocking out with my head-frame. We were laughing hysterically when we tumbled back out and the nurse just smiled as she led me toward the machine. The doctors then informed me that Mo Fo has an evil twin. The treatment would last about 45mn versus the 20mn we were originally planning for, and both Mo Fo and his twin were going down!

Gamma Knife looks like an MRI with a dome at the head. I was asked to lie down toward the top and then slowly leaned back until I felt a clunk that rocked my skull a bit and the head-frame locked into place. Everyone said their goodbyes and exited the room. The bed began to mechanically slide back until I was inside the dome from about my chest up. The head-frame was rotated back at a slight angle, so that the weight of my head rested on just the 2 screws stabbing into my skull. It was uncomfortable, but I knew it had to be done and just closed my eyes. The dome I was locked into shot many tiny precise beams of radiation directly at the tumor in its shape while the head-frame kept my head in place. All of these small rays of radiation were individually harmless to the surrounding brain tissue, but when they all converged directly on Mo Fo and his evil twin, it mutated their cellular DNA causing destruction of the tumors. I could just imagine Mo Fo and his twin screaming in high pitched horror, "We're melting! Melting! What a world... what a world..." (um like in the Wizard of Oz duh) The treatment itself is painless and invisible, although it would be so cool if the Gamma Rays were visible!

After about 45 minutes the bed slid out and the doctors came in to help me up. I went back to the exam room for head-frame removal. For the removal you stay awake and although it was not painful I wouldn't say it felt good. An odd compression feeling happens as they unscrew the back screws, and I could feel the bones in my nose almost caving back. Soon all 4 screws were removed and as they lifted the head-frame I could feel warm blood trickling down. I was quickly cleaned up and bandaged with a Lady Gaga inspired head wrap, with attached ice pack of course. The IV was removed, and that was it!

I slept the entire drive home, came in and slept some more. My girlfriend Sheila is so awesome, she watched the kids all day and then at her insistence took Mica with her for a few more hours so I could just rest. I finally woke up a bit later in the day when Mica returned and tried to pet the puppy, but when I bent over blood started gushing from my forehead, and it finally happened, I freaked out. I started yelling for Paul and tears ringed my eyes. I don't like blood, who does? He rushed me into the bathroom and Mica followed us screaming bloody murder. There is no room for panic and tears when a toddler is watching, so I wiped away the tears that never fell and told her it was ok, Mommy just has a little boo boo.

I felt well enough to meet my parents for dinner at Wabi Sabi, where we raised our sake and plum wine and toasted... to my Daddy for his birthday, to God and technology, to my doctors, to life, and to love.

Wednesday, June 2, 2010

Happy Birthday Mica!

Today my baby girl Micaela turns 4, and after a hilariously fun Memorial Day with my parents and whirlwind day at Disneyland yesterday, we are back to the daily grind. JT's last day of 2nd grade is tomorrow, the puppy is walking and starting to play, Paul is getting ready to go back to work, my ASL class is over and summer beckons me to a hot beach. In less than one week Mo Fo is getting zapped with Gamma Knife, and I pray things go well so I can continue running instead of losing fitness and having to start over again. I guess I should be worried about bigger things, like Mo Fo himself, but honestly I am at peace with the situation.

As for Disneyland, we went on so many rides, watched Captain Eo, and ran around the park until finally collapsing for pizza and driving home right as the park closed. I had a dreamless sleep and today I am just enjoying the calm. Life is good, and while it concerns me that things cannot possibly stay this good for so long, I push away the worry and just breathe. However long I have, I am going to enjoy every moment of it.

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