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.