Monday, May 5, 2014

The Abyss

I broke through the cloud this morning, so I write. My brain, my brain escapes me. The elusive bandit comes and goes, leaving me at times incapable of understanding written words. It seems worse these days, and instead of wallowing in fear, I just avoid blogging, reading, emailing, researching. It's probably just seizure activity which, of course, has halted my driving, limiting my independence yet again. 

I haven't been trusting my brain to be around people much, just an hour or two at two different baby showers over the past two weeks. I refused to miss them, but was nervous throughout that I could lose control of my brain, therefore hijacking the party. That's the number one reason why I avoid events, I don't want to cause a scene, or distract from whatever is being celebrated. It's mortifying. Even typing right now is tricky. The spelling of words isn't naturally registering. Thankfully spell check occurs.

Technically, I'm still coming down from the seizure a few weeks ago, and I've had an aura since then. With all of the scrambled electrical currents in my brain, it's no surprise that I'm having problems, but there is always a hovering fear of tumor growth as a possible cause as well. Especially since my diet has been more off than on. The guilt and the fear compound which makes me wonder why the hell I eat sugar in the first place. Then I remind myself that sugar is addictive, and it stimulates pleasure centers in the brain so of course I would want it. Damn sugar devil. I wish it didn't exist. Life would certainly be easier. What a double whammy that the delicious sweet stuff feeds cancer. To trick your body into thinking sugar is a good thing (poor hijacked endorphins). Jerk.

My next MRI should be Saturday May 31st. Thus begins the final month of trying to play it cool, trying not to panic, reminding myself that if the tumor grows it is not the end of my life (not immediately anyway); it's just a time to try new additional tricks and treatments. 

Before I can spend much energy on the results of the next MRI, I'm stuck saddled with the confusion of why my brain doesn't always recognize my hands and arms, or words. I'm in a daily haze, trapped inside the depths of my own grey matter abyss. It is isolating. If not for Dan's patience, and our shared sense of dark humor, we would probably be losing it. Instead, we laugh, and laugh, even when I'm too tired, or dizzy, as he scoops me up and carries me to bed.

Between the bouts of mental less-capacity (I'm making that phrase up, but it suits), Dan and I have gently, slowly, made it to the gym the past two days. What I noticed the first day, after lifting weights, was that I could feel the blood pumping in my right hand. You remember that guy, right? The numb hand I roll around with? Anyway, it was very comforting to have a physical breakthrough during a time when my comprehension of things, and mental acuity are faded. These waves of complete capability to barely being able to function could just be my new normal. And I try to remind myself of that. That this could be my life, a continuous roller coaster ride of comprehension or lack thereof, but it will never cease to surprise me when I'm unable to take care of things. It will always make me fearful when even my inner dialog remains scrambled, beyond my best efforts. To not understand the voice inside my mind, to lose that most basic navigation, is humbling, and makes me feel elementary, simple, obtuse. Sometimes I literally feel like Alice falling through the rabbit hole, just falling and falling, flailing my arms through the air in the darkness. 

So forgive me for those who email and call or text, I am just treading water these days and can't even remember to breathe regularly. As my grandmother loves to say, "This too shall pass." And I'm sure it will. At least a reprieve of sorts will occur. It's the nature of the game, the ebbs and flows. For now I need to rest. 

The view from our chaise (which is technically part of our couch, but we divided it and now I have the perfect little cozy nook). Our happy little triangle park, so gorgeous, full of blossoms. I never tire from looking. 



6 comments:

  1. Sending you endless love and comfort!
    Always! Maleka

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  2. Keep smiling Jess tomorrow is another day.
    Xxo

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  3. In one of the experiment mentioned by Seyfired in his book (pg 293), he reported “The results show that DER (Dietary Energy Restricted) significantly reduces tumor growth whether the mice are fed a standard high carbohydrate diet (SD) or a high fat, low carbohydrate KD” and on the same page, “Our results show that brain tumor growth is influenced more by diet energy content than by diet nutrient composition”. If this is correct and applicable to human, then maybe the occasional lapse for sugar (as a component to what was consumed) is less a problem than the resultant increase in total energy (or calories) intake? If so then perhaps the challenge is really just how to subsequently offset the possible excesses?

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  4. Eloquently said Jess. Rest, you will get better.

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  5. Hi Jess, it's me John that guy who knows Dr. Holland. I check on you every so often to make sure you are still above ground. Anyhoo, I just read this post and a lightbulb switched on above my head. I'm not kidding, just like in the cartoons, inside of a white bubble and everything. Just this week I got the best present ever-a seeing eye dog that was retired early for medical reasons (Addison's disease). When I was in college I puppy raised these suckers and they are absolutely amazing. I researched guide dog foundations in your area and found this http://www.gdui.org/Guide-Dogs/guide-dog-schools.html#gdftb

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  6. I was thinking you might qualify for some type of dog that detects seizures. They are really helpful for getting people over the I hate being dependent on everybody because blah blah blah. They are also great for forcing you to get up and care about something else, relax your blood pressure etc, and people think it is pretty cool to meet a specially trained dog. If they are classified as a therapy dog, you can bring them anywhere and your landlord is forced to let you have them. I don't know what the therapy dog situation is like out there, but often times in the guiding eye schools they can put you into contact with someone who knows your particular region.
    Just a thought, be well
    John

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