Long Beach Marathon 2012!

Well here I am 5 years later, a little older, a lot slower, and very happy. This year the NF Endurance Team hit the Long Beach Int'l Marathon, and I was there to serve as a Team Captain for my 5th year in a row. I doubt that really surprises anyone, but the real icing on this year's cake was my Dad ran the 5K with me! Yes, he put down the cigarettes, laced up his running shoes, and used his long lean legs to lope just a bit in front of me all the way to a huge finish! I was so proud of him, he really is built to be a runner and I hope he continues to RuNFor a Reason... ME haha, ok and JT. Speaking of JT, my amazing lil' man once again smashed the Aquarium of the Pacific Kids' Fun Run along with his friend and teammate Haley Cruz. The kids did a wonderful job, and Mica did her part shaking her yellow NF Endurance Team Bell as loud as she could while we all cheered JT and Haley to a strong finish!

I met several new friends, and we welcomed another family into our close-knit team. Team eNouF kicked fundraising booty this year, and it was great to meet another group of passionate people working hard for a cure.

On top of all of this, my parents booked an amazing 2 bedroom suite overlooking the quiet gray pacific. In between networking and team duties, we were able to sneak away "just us 6" for some much needed family time. Paul worked hard all weekend loading, unloading, carrying, setting up, and just generally helping wherever he could. As I said during my talk at the annual Team Pasta Dinner, thank you Paul, you are my best friend and I love you. (awwww, mushmush)

So to conclude... yes finally... it was a wonderful weekend, I was able to see people I adore, raise money for a great cause, cross a finish line with my Daddy and cheer for my only son as he did what he does every time, make me so incredibly proud of who he is.

You can check out an article I was interviewed for in the Long Beach Press Telegram here: http://www.presstelegram.com/ci_21720894/long-beach-marathon-participants-had-reason-run
You can see our fundraising page, and if you are so inclined, we are of course still taking donations. In fact, we will be until a cure is found HA
http://ctf.kintera.org/faf/home/default.asp?ievent=1008232#.UHT6awtqmOw.facebook
And finally, you can see all the photos I took here! Why are my children painted as zombies?? They sat for a make up session to earn Momma some free tickets to a Zombie Festival! Minions come in handy these days...

NF Endurance Team Photos!

 

My Inspiration

This weekend I will return to the Long Beach Int'l Marathon to serve as co-captain of the LB NF Endurance Team for my 5th time. When I reflect over the past five years I see a lot of ups and downs, but more importantly I see a permanent change I have made within myself. I have been filled with positivity, with motivation, and with a sense of community that comes from fighting side by side with others who live through the same battles, and much worse even, every day. I am inspired by people who go through so much more and do so much more then I could ever hope to do. These amazing people in our NF community fill me with hope and propel me forward on every course I have ever raced. I know that when I am spending time in the Hello Kitty Cave, or taking time off to just pretend our problems don't exist, these NF Warriors are still out there. I hope they all know when they need time to take a step back from the community to focus on their own families, as I have over the last year, that I will do my best to have their backs as they have mine. Every time any of us lead a support group, reach out to a newbie who is terrified by a recent diagnosis, lobby for research funds, run or walk to fundraise or donate out of our own pockets toward our shared goal of curing this devastating disorder, we are all supporting this amazing community that is the only silver lining to this damn thing we all live with every day. Together, that is exactly what we do... We live. We breathe, we love, we share, and oh yes we fight just as surely as any other family. So on race day these are the people in our NF community who consistently fuel my drive by supporting me directly as well as inspiring us all...

Jimmy Jackson... Now many of you are lucky enough to consider Jimmy a close friend, because he has a way of making everyone feel like his friend. I don't know how many times Jimmy has stepped up when needed to keep the NF2 Crew functioning and happy, but he took over for me when I couldn't handle the strain of moderating such a large group, and he helped everyone get along as only he can, with simplicity and kindness.

Tracy Galloway... Tracy's daughter was diagnosed as a teenager and Tracy has made it her mission to save her by any means necessary. This woman learned more about NF in one year then most of us who have been involved over 20  or even 30 years have!  She asks specific questions, and if there is no answer she asks why not? She steps up to help in any way she can constantly, whether it is as a friend or in a professional role. She is efficient, intelligent, opinionated, and just one hell of a woman.

I will only name one more person, although there are so many more, and that is Bob Skold. He works at CTF for the NF Endurance Team, and has gone above and beyond to fill that role over the years. He has run over 50 marathons for the cause, as well as an ultra marathon or two! He is modest, he rarely can answer when I ask what his finishing time was, instead focusing on all the people he is intent on helping via his role on the team. So imagine my surprise when I was lucky enough to line up at a starting line with him one year and he left me in his dust! He has this elegant lope, and a steady determination that gets him across the finish line every time, whether it is a literal or proverbial race. The team has changed a lot recently, but Bob remains as dedicated as ever.

I hope each of you, Jimmy, Tracy, and Bob knows I am sending you love and gratitude from the pavement this Sunday. Thank you from the bottom of my heart for inspiring me every day.

Tomorrow

Time rolls under my feet like asphault beneath my wheels on a road trip toward a horizon that seems so close it burns my flesh. The stench of decay settles wearily upon me, I take no notice of it. It was there the day I was born, and will undoubtedly follow me to the grave. Love expounds from my bloody heart, the day it lies dry the destination will have been found.

Will it be all we expect it to be? Much more, or frighteningly less?   Why is my blog always so damn emo? If you know me at all you know a few things about me:

I never shut up. Ever. Right now I have simply exchanged speech for text.
I am highly opinionated, but only moderately educated, and slightly indignant.
I brake for tail-gaters. 'Tis true.
I brag about my children a lot, and when other parents don't, I wonder "Why not?"

I browse other people's blogs and wonder why I am not as fun, or fashionable, or talented, or motivated. I think that we all feel that way, but still feel slighted and unecessary.

Moderation is not in my repertoire of prior experience.

I long to have some sort of kitchy, stylish, up-cycled, mint-colored blog about all of Mica's newest clothes from Target and JT's latest fascination with losing teeth.

Tomorrow, I will be her.

You may know...

Time rolls under my feet like asphault beneath my wheels on a road trip toward a horizon that seems so close it burns my flesh. The stench of decay settles wearily upon me, I take no notice of it. It was there the day I was born, and will undoubtedly follow me to the grave. Love expounds from my bloody heart, the day it lies dry the destination will have been found.

 

Will it be all we expect it to be? Much more, or frighteningly less?

Why is my blog always so damn emo? If you know me at all you know a few things about me:

• I never shut up. Ever. Right now I have simply exchanged speech for text.
• I am highly opinionated, but only moderately educated, and slightly indignant.
• I brake for tail-gaters. 'Tis true.
• I brag about my children a lot, and when other parents don't, I wonder "Why not?"
• Moderation is not in my repertoire of prior experience.

However, you may not know that:

• I browse other people's blogs and wonder why I am not as fun, or fashionable, or talented, or motivated. I think that we all feel that way, but still feel slighted and unecessary.
• Pretty much all of my favorite people are politically conservative, Atlas Shrugged is one of the best books I have ever read, and I <3 a="a" completely="completely" dr.="dr." in="in" laura="laura" lesbian="lesbian" way.="way.">
• I long to have some sort of kitchy, stylish, up-cycled, mint-colored blog about all of Mica's newest clothes from Target and JT's latest fascination with losing teeth.
• Tomorrow, I will be her. My blog will be coral... or was it mint?

 

 

 

La vita è bella!

I blogged this ages ago and for some reason it did not post, this is what happened when I had a reaction to the Votrient but was unable to get care because my Neuro-Oncologist, Dr. Barth, prescribed me a drug off label and then closed his office without any further instruction. Several people in my entourage (yes, I have an entourage) expressed dismay along with me, but then also anger. I want to clarify I am not angry at Dr. Barth, quite the opposite, I am grateful I was referred to him before his office closed. In the short time I was his patient he accomplished something no one has ever done for me or anyone in my family before... he went off-protocol and tried something different. There is no cure for NF, no true treatment, but he is trying. I will be his guinea pig any day. So this is how it worked out a couple of months ago:


So yesterday my impatience won out and I called Dr. Barth's office to explain the entire rash debacle. The receptionist sat through my diatribe about breaking out in a rash from the Votrient and nobody being willing to treat me because Dr. Barth prescribed the Votrient off-label, he then transferred me to 2 other people who listenened to the same spiel, until finally I was passed around to a Nurse Practitioner. Yes! She asked a zillion questions and then prescribed a small pack of steroids and said if that does not clear it up then to call back and they will figure it out from there. Score one for me! So I am starting the steroids tomorrow morning, but today was a long, itchy, beautiful day. Mica and I had 6 hours to kill in Riverside while waiting for JT to complete his weekly classes at the charter school. We parked in downtown near Mission Inn and spent the entire day exploring the library, Mission Inn, and surrounding statues and art. The day was an entire moment frozen in time filled with Mica's hair swishing in front of me, her sideways grin at her own jokes, and lots of slugbugs and tickle monsters. It was the best day I have had in so long, and my heart is just filled up to overflowing from plurp kisses and shared giggles.


Back to the present...

I am still on Votrient, and now have a new neuro-oncologist who I really like. He seems modern and informed. He agreed to keep me on the drug, and I am feeling great. I plan to see stability or shrinkage on my next MRI scans in November. That is right, I said it, I spoke it, and it will be! Positive thinking may not change concrete matter but it shapes my perspective so that I can wake up with a smile every day. Why not?  La vita e bella!!

NF Endurance hits Long Beach 2012!!

With summer promising late nights of freedom mingled with long hot days of sunburns and blue pools, I turn my attention toward my favorite event of the year…Serving as Team Captain for the mighty NF Endurance Team at The Long Beach Int’l Marathon on October 7th! This year I have a lot to run for…


Now the last year has been a bit complicated and heart-breaking for me. While the swelling that threatened my vision has completely subsided, it did leave a small amount of cognitive impairment behind. What that basically equates to I have a harder time processing and applying the information. So I take things a bit slower, and ask people to write more often. It is a blessing that the only permanent damage done is a completely manageable. I am ecstatic to say that as of today every single tumor I have had treated with Gamma Knife is shrinking. Was it easy? No. Were there side effects? Yes. Do I blame Gamma Knife or Dr. Duma? No, I blame the fact that I have NF2. I made the right decision for myself, and would make it again. Now I am moving forward with my new neuro-oncologist and will finally meet him this coming week. I am feeling great and getting into a groove, ready to hit Long Beach with everything I can…

As time marches on I find that my son JT now has his own little spot on these updates beyond telling you all that he is fabulous, hilarious, and crazy smart… I now have to keep those who are in our circle updated on his tumor progression. It breaks my heart in a million pieces, but I am a mother and a wife, so I do what any of us would do, what many of us do, what you would do… I put on a smile and do what I can. I take it a day at a time. *Deep Breath* By doing Delayed Contrast MRIs, the doctors at NIH are able to see which areas of the Hearing, Vestibular, and Facial nerves are absorbing more or less contrast, telling them where miniscule tumors have begun to develop before they are even visible or measurable. We were recently told that JT has small areas of developing tumors on every nerve in his IAC (Internal Auditory Canal.) Now, the doctors say that right now there is nothing we can do but twiddle our thumbs. I say to heck with that, we can RUN!

The Children’s Tumor Foundation is the largest private funder of NF research. “How?” you may ask? By funding clinical trials, targeting medications that already have FDA approval for other uses, by using a stringent review process for all grants given, by educating the NF community and supporting NF Clinics. In all of these ways I have personally and repeatedly been impressed by the Children’s Tumor Foundation. If we are to find a cure sooner, rather then later, then we all have to throw our weight behind the largest vehicle we have, and that would be CTF.

So you have read enough? Are you ready to get involved and do something positive? Get it! Follow these steps:

1) Sign up with the team at: http://ctf.kintera.org/NFELongBeach2012

2) Register for the event at: http://runlongbeach.com/

3) Show up and Kick Ass!



Questions? Comments? Want to volunteer? Email me: Okamador@aol.com

Take the Good with the Bad

Over the last few days a rash has ominously spread around my neck, adding a bit of skank to my brand new chest tattoo. The rash started before the ink, just to be clear, but it was a small area toward the back right. Now it has grown and if I go in the sun my entire upper body itches like crazy. This past weekend some of the fam bam came to our house, and we all drove to Yucaipa to cheer on Paul's little brother Thomas while he kicked ass in a soccer tournament. By the end of the first game I had to hide in the van, Paul got me Benadryl, which coupled with all of my other meds completely knocked me out. I was so disappointed I missed Thomas's team winning the entire tournament! I told you he kicks ass! So now I am covered in this itchy rash, which is a possible side effect of the Votrient, with no appropriate doctor to contact. Being that I just moved I don't even have a regular GP! I just left a random urgent care where they refused to get involved, apologetically telling me all they can do is send me to the ER. For a rash?? I want to be angry and upset, but honestly I think Dr. Barth really did just move on to private research, and although I completely disagree with the way he went about it, I thank the universe that I was sent to him and he completed the testing and prescribed me the medication before closing up his practice. What would the alternative be? Continuing to wait around for research to catch up to necessity? Dr. Barth may have upset me by the way he abrubtly cut off all care, but I am going to make the best of the knowledge he was able to impart before parting ways, and move forward with the treatment plan he started me on with another doctor willing to be as much of a maverick as Dr. Barth was. I think the entire debacle honestly just hurt my feelings by reminding me I am just another chart to rush through, but you take the good with the bad and do the best you can. In this case, I now know much more about my tumors then I did 6 months ago, and can continue to be hopeful that the Votrient will fulfill it's intended purpose. In the meantime I have to get these ugly blotches under control! Quick update before I repost this: My neurologist has already set me up with a new neuro-oncologist. I spoke with his office today and they are working on my records so they can get me in as soon as possible. They said they want me to go to the ER and have the ER call Dr. Barth about the rash and ask what exactly I am supposed to do because this new doctor has not even consulted with me or read my records yet and cannot be expected to deal with an off-label drug with no information. The rash is contained around my neck and only bothers me if I go in the sun, skin rashes and heightened sensitivity to the sun are normal side effects of Votrient so honestly the ER sounds like a huge waste of time, but I don't want to start out this new relationship by ignoring the doctor's first recommendation, so tomorrow I will go get checked out. I will no doubt sit in the ER for hours and they will say "See your doctor," and then send me home. "Do what I gotta do to do what I wanna do" as my BFF Adria always says!

False Hope?

Every morning I am awakened by a sudden vibrating under my pillow. I turn over and smack my alarm, then grab my pill organizer and choke down 4 tablets of Votrient. I turn back over and curl into a ball, ignoring the nausea that hits in waves as the medication dissolves. I fade back into my dreams for what seems like only moments before my babies crawl under the sheets with me and press themselves into the shape of my curve. I inhale and absorb the warm light breaking through my blinds before starting another day. I go on about my usual business of being a Mommy, cooking up eggs and buttering toast, making beds and rotating loads of laundry, swiping on a thick line of black eyeliner and primping my newly chopped short hair... I live, but since I have started the Votrient I have had a bit more of a bounce to my step. When I look around my new house I think I may actually get to grow a bit older in it. When I eat meat I actually worry about clogged arteries. When I look at my family I don't wonder who is going to take my place. I know the medication Dr. Barth prescribed is only theoretically going to slow my tumors down, but the simple concrete act of swallowing those pills every morning has made me feel empowered, as though I actually have a fighting chance at just a bit of longevity. I don't know why I ever bother to lie to myself, or why anyone would instill false support in a patient in my circumstances, but my neuro-oncologist mailed me a form letter to inform me his practice is closing. What the fuck? Yes I said it. I saw him not 3 weeks ago at which time he told me he wanted to follow me personally, and that I would need to have some specific tests done as time went on, not to mention when he first prescribed the drug he told me it was something really new and special to do this testing and he was excited to be able to attempt to help me. At our last visit he had his nurse draw my blood, and told me to schedule our next appointment in 8 weeks. Surely I recieved this letter by mistake? Perhaps it was sent out to all of his patients, but he would be contacting me for further instruction? I called first thing this morning to find out. The staff was completely apathetic! Yes, his practice is closing. No, he wont see me one final time. Yes, he told me to come back in 8 weeks but he made the decision to close his practice a few days after our appointment. What am I supposed to do? Please refer to the list of random yellow-page copied generic neuro-oncologists we sent out with the original letter. He basically told me, "I said Good Day!" What the FUCK. I emailed my regular neurologist, who referred me to Dr. Barth. His PA agreed it did not seem right and let me know he would speak to Dr. Duma immediately being that oh I don't know I'm on freaking targeted medication for uncountable CNS tumors and now on a medication that affects my entire body with absolutely no official medical supervision by the appropriate type of physician!? Absolutely unacceptable. I asked Dr. Barth's office if he can email or call me back with specific final instructions and guess what the response was? "We cannot confirm he will contact you." Wow. As I told his office I will be contacting the medical board and whoever else I need to contact to make my voice heard about this. When I hung up the relay messenger this morning I had a knot in the pit of my stomach. All of the hope I had built up surrounding this doctor, and the things he told me, and the testing, and the medication, getting it approved and taking it every day... Did he simply prescribe me false hope? All of it seemed to evaporate before my eyes, and I couldn't help it, tears welled up. I felt so defeated by my fears and once again betrayed by my body. Since my brain was so swollen last year I have yet to regain complete mental clarity, and I feel like everything around me is a haze at times. When faced with a heavy heart I want to retreat to the ease of sleep and blankets and care takers, but it is not an option. I refuse to crawl into bed and give up. Now, I have to stop ranting, think clearly, and take care of myself FIRST. Dr. Duma has already recommended another neuro oncologist. I need to research him before I share about him or decide to see him. Dr. Duma's PA that always has my back said that he is really good. I will have all medical records transferred over by the end of the week and get an initial consultation scheduled. I tend to choose doctors based on recommendation, similar outlooks on treatment, and then gut instinct once I meet them. So we shall see. We shall see.

Shell

"I ams what I ams" I quoted Popeye online shortly before laying down on a tattoo table for my latest piece. As the needle hit my skin the permanence chased away all doubts. Why would I want my Nani to shake her head and the Tish to purse her lips every time they see me? I wish they wouldn't, but understand their opinions are more socially acceptable then my own, and so I accept the comments as a form of continued masochism. The sighs and head shakes are nothing new, and I wish they didn't happen, but I have to be who I see myself as, and not who everyone thinks I should be. I should just stop here and clarify that those who love me really do so unconditionally, and it usually stops at a simple, and possibly well-deserved head shake or off-hand comment. The head shake is simply conveyance of a complete difference of opinions. We all know why. We all know why I get them, why it isn't going to change, and why it doesn't matter. Life is temporary. Skin is temporary. I can tattoo myself with any and everything that catches my fancy, whether I have a deeper meaning as I did today, or I simply adore a design so much I must absorb it immediately. The ink becomes a part of my skin, but not really a part of me. My skin will decay and I will most likely live on in ways that nobody would ever recognize. I have no control over when or how, nor do I control how much pain I wake up to daily, or how often people stare at me when I lose my balance as I walk, or speak too loudly, or just mystify them with my never ending flow of words. I control nothing, but my skin is mine, mine to scribble on and pierce as I see fit. If people are going to stare, I may as well give them something to rest their eyes on beside my scars. Beauty is relative, and when I color in my own scars I take ownership over my own pain. They are mine, the pain is mine, they ground me in this shell and remind me that I have been places and still have places to see. I'm not done... not even close.

Hope in a Bottle

Well those of you who live in my life, as I see it, already know that I received a little bottle of hope 2 weeks ago by Fed Ex! Yes, I came home from errands with both children on my heels when Mica spotted a box on the porch. I had no idea what it was, and had to snatch it back as the minions attempted to rip it open. They watched expectantly as I ripped the box open and pulled out a plastic bag with paperwork... and a bottle of pills. I was perplexed, but then I saw the word VOTRIENT on the label and knew it was going to be a good day.

From the moment I met Dr. Barth, I knew good things would come. Through the testing, and results, and now getting such quick approval from Medicare for a drug that is not FDA approved for my specific use (it is actually used to treat kidney cancer.) Now I have been dutifully swallowing my little pills each morning, never missing a dose and "following the directions to a T." I have had no ill effects so far whatsoever! There was potential for loss of appetite, fatigue, hair loss, and headaches. So far I am only as fatigued as I usually am, no worse, and my appetite seems to have increased! (A complete coincidence and good excuse I am sure!)

We just moved into our beautiful new house with plenty of room for the kids. My family and friends have been helping so much, going out of their way to be supportive and jumping in to roll their sleeves up right along with me. I am beyond appreciative to the Universe for my current state of existence. This medication will not cure me, or even make all of my tumors stop growing and shrink. Do you know what it will do? What it has already done? It has allowed me to think that maybe, just maybe, Hope is not so unattainable after all. I already have it.

Hope Is All We Need

A few months ago I stared at an image of my brain splayed across a computer screen. As we all know by now, tumors congest every orifice and ventricle to be found. On that day I asked my neurologist to send me to a neuro oncologist to discuss what possible medicinal options I may have. (and I do not mean smoking weed!) In October 2011 I met Dr. Barth , who has treated patients in tandem with my current neurologist many times. At our consultation he had already reviewed my case and explained that he wanted to retrieve samples of tumors I had removed years ago from Hoag Hospital, and run tests on them at Clarient Laboratory to see if we could pinpoint a specific medication that may best target my own personal tumor biology.

There are many different types of tumors, derived from different types of cells, and relying on different pathways to feed themselves (from my elementary understanding!) Every person with NF2 has their own individual tumor chemistry. That is why while Gamma Knife has successfully stagnated every one of my 13 treated tumors, I have met people who did not have any response at all to the same treatment. There are over 400 different types of drugs that have the potential to stop the proliferation of tumor cells, and Dr. Barth likened trying random drugs to finding a needle in a haystack. He postulated that mapping my tumor DNA to decipher my unique tumor genetic code could lead us to a tailored medicinal assault to cut off my tumors' blood supply and theoretically starve all of them out. Now there are different types of tumors just in my own body, but Dr. Barth said it is likely that they all rely on the same pathways.

So this week I found myself in Dr. Barth's office waiting to see if he has had any luck in this ridiculously modern endeavor. Dr. Barth came in with a warm hug and then informed me that what he had to share was incredibly cutting edge, that nobody is doing this yet, that it is brand spanking new, and that I am literally his first patient and one of a handful ever to have this testing done. He then told me that the testing successfully told him which types of receptors my tumors are expressing, and with this information he has identified which medication has the best chance of potentially slowing or stopping the growth and development of tumors in my body.

Can we just have a moment of silence as we all absorb that information?

Theoretically, he has identified a medication that could SLOW THE PROGRESSION OF MY TUMOR GROWTH!!!!!!!!!

He then said he would understand if I am unwilling to try, since this is all so new, and I may not want to be a guinea pig. Are you kidding me? I was born to be a guinea pig! Einstein said that "Insanity is doing the same thing over and over and expecting different results."


My grandmother, uncle, Mom, and numerous friends and amazing people I have known have been born with NF2 and been hacked and radiated to death all in the pursuit of a tumor-free existence. They all basically became deaf, blind, paralyzed and alone, trapped in disease ridden bodies that gave out before their lives had even had a chance to start. I am willing to try absolutely anything different. Dr. Barth could tell me I may grow a third arm and I would do it!

So, the next obvious step was to ask, "What is it???" It is called Pazopanib, also known as Votrient. You all have google, so I'll let you research for yourself, but the only significantly reported side effect is diarrhea. Dr. Barth said this apologetically, to which I raised my hands in the air as to mimic the scales of justice and asked, "Brain tumors? Or diarrhea?" We all smiled in response as though the three of us in that room knew something amazing, and we did.

There is one caveat, Pazopanib is FDA approved for kidney cancer, not NF2, and insurance does not cover off-label usage of medication. I casually asked how much the medication costs out of pocket and was told $9,000 a month. A MONTH. Dr. Barth said I need to be prepared for a fight with the insurance company, and I told him I will win by any means necessary. I will write letters, appeal, file whatever papers need to be filed, and if Medicare will not approve me I will write GlaxoSmithKline ten letters a day with pictures of my children attached until they underwrite the medication.

I will get the medication, and it will slow these tumors. Bossy, aren't I?

Now, I feel the need to be realistic because a lifetime of reality has taught me that there is no such thing as an answer. Consider that: no answer is ever absolute, nothing is ever forever, and life by nature is chaos. Fairness does not exist. It is why I am not Christian, I cannot abide by a belief in judgement. Life is not fair, why would death be? Most people believe that prayers and maybe a drop of karma should make a difference, I believe that if that were so entire countries would not be famished and angry in this world. None of us know. Know what? Anything. We know nothing.

So please do not assure me this will work out. I really think that given my current situation in life I will be able to start treatment in due time. There is a chance I will not be able to, because there is always a chance. I may take the drug, have a new MRI, and find that my tumors are shriveling up and screaming a little as they melt. I will believe it when I see it. In the meantime I am haunted by that image of my brain, and every time I close my eyes I wonder if they will open again. I wonder if they will open to darkness. I wonder if I will live, and when I will die. The difference is that now I really and truly have hope. A good man once famously said that love is all we need, but I say he was a bit off. Hope is all we need.

Film

I read my own blog and forget I am watching myself. My eyes glaze as memories play like a movie skipping through my mind. Without these words or pictures to prod my remembrance the stories are thin, and evaporate one droplet at a time. I console myself with promises to think only of the future. How easily one forgets the past once lay before us, and time does not exist.

A summer that is done seems to be yet to happen, should I still save this dress for a midsummer dream? Spring has sprung without ever ending, I vaguely remember a chilly fall day, and strain to recall smiling my way through the social season.

Clarity returns like a burst of actuality. Happiness blooms in spite of oncoming frost. How much was lost? You cannot miss what was never to be. You should not miss what you only expected. Expectations are meant to disappoint.

Now comes the poison that promises to extend life. Are promises meant to be broken? Practitioners smile and escape out the back door, out of practice and devoid of care. No way to explain that what people expect is not as tragic as they imagine and nowhere near as heartbreaking as one could suppose. The pain lies not in the nerves but in the heart when you wonder who will comb your daughter's hair. The pain cuts ever deeper as you wonder if your boy will have need for another mother to hold his hand as he dreams the same dream.

Days lie in waste when you consider their rarity, toil seems ridiculously uncouth in a life with such altered prospects. Nothing to conjecture but the end of time itself, no need to plan for a life not to be lived, and not possible to prepare for what I will not be here to oversee. Rueful smiles, unsolicited clemency, smothering hugs and empty offers of empathy haunt my days. I inspire nothing but take credit for everything, my accomplishments are mundane yet solicit high praise. I rush through the prosaic, seeking out the moments of purity, completely aware I only march closer to the ending credits. As they roll I will regret nothing, for it will be too late to suppose and too early to accept their finality. Life will live itself and require nothing of just one, there wont even be a blink of an eye.

Its in the Past

One year ago today is in the past. One year ago I ran a half marathon at Surf City in 2:05. I vividly remember the course, counting the miles down as I ran my heart out in my bright yellow singlet. I weighed more but felt stronger. My legs carried me without protest, they were trained to complete that race. Hours of time running in circles and praying toward the horizon had prepared me for each mile. People passed me, but I owned it, they flew by and were gone to run their own race. The pain, the happiness, the freedom of flying along by my own will. The views of that expansive blue we call an ocean. Sea air filling my lungs and a crisp breeze propelling me forward, then slipping out as I gasped for the next breath. The creeping pain building under my rib cage as I burned through more and more of my stamina. I knew I was running on empty, but soon the finish line loomed ahead, and I surged forward.

Running what I could never know would be my last race.

One year ago today is in the past, and all I can do is look forward. Surge ahead in a new race. Forge a new future without succumbing to the immense sense of loss I feel for that course. For every course.

State of the Brain Address

On Thursday Paul and I made the drive to Newport Beach to see my neurologist Dr. Duma. He has been my primary neurologist since I was a teenager, and I don't foresee that changing at any time. I trust him, we have a good rapport, and he has used Gamma Knife to treat over a dozen of my brain tumors without any major deficits. Tumor number 12 to be obliterated by Dr. Duma was my first treated tumor to have caused such serious problems as I have had over the past year. I consider that a damn good run. My concern now is that after my last MRI with him I was told the swelling was stable, when in fact #12's evil twin Lucky 13 was swollen and angry at the left side of my brain. For those of you keeping track that would be the opposite of stable. I wanted to see Dr. Duma myself for an updated opinion, a state of the brain address if you will. It was overdue, I mean I am a bit attached to my brain and like to make sure it isn't going to just explode or melt one day.

So I hobbled into the office... oh did I forget to mention I had an adverse affect to the medication that drains the fluid from around my optic nerves? Yes, it also depleted the fluid cushioning my joints apparently. Good to know, I found out the hard way when I sprained both my ankle and knee in one weekend. Ok carry on... so I hobbled in, we sat down with Dr. Duma, and his immediate concern was for my weight loss. The last time I saw him I mentioned food was low on my list of priorities these days and he told me I didn't look like I was hurting for food. Since then I have gone from 123 to 104 pounds. My family keeps saying I am too small, my girlfriends can't stop telling me how great I look, and I am just happy to be back in a size 2. Dr. Duma was only slightly amused, ordered another abdomen MRI and told me to eat more. I told him about my concerns regarding the imprudent use of the term stable when referring to brain damage. His response was that I seem to be doing fabulous lately, and that the swelling is just going to be a permanent irregularity we see on every MRI. He doesn't foresee any serious problems stemming from it. I said that may be so, but humor me, if this huge burn spreading across my brain does perchance become a problem, what are my options? He said that if necessary he would go in and surgically resect the offending tumors, that the option is there if necessary one day. He also pointed out that all of my other zillion tumors seem to be behaving right now, and as I had told him myself I am still seeing clearly even without the crazy fluid draining/ankle spraining medication that I relied on to see just a few months ago. He gave me a Medrol pack to help my joints recover, a prescription for physical therapy and of course the abdomen x-ray. At that point I was released back into the wild, free to live my life for another 6 months.

So now I am in a terrific mood. I am as healthy as I can be at this point, and on March 1st our little family of four is moving into a house! Yes, finally, we are moving on up. Life is good, fabulous really.