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. 

Huge Tumor News

You guys there are some seriously exciting new vaccines and drugs targeting IDH mutations. I have to thank our buddy Stephen (Astrocytoma Options) for keeping his fingers on the pulse of cutting edge treatments. This means great things for us in the cancer/tumor world. Our job is to keep hanging on until effective treatments become available. I mean get real, radiation and chemo aren't cutting it. So that's it. We just have to hold out and stay healthy long enough for research, and technology, and the government to allow treatments that will heal us. And it looks like we've got a few on the horizon that may do the trick.

The link below is referencing blood cancers, but that's okay, if it does work on IDH2 mutations, that means (I believe) that it would be effective for all cancers with the mutation (more or less, anyway - I'm sure some of the mechanisms are different). Meaning you could use the drug for other cancers (ie: gliomas) as an off-label treatment.
Phase 1 Data Demonstrating Clinical Activity of AG-221, First-in-Class Inhibitor of IDH2 Mutations, in Patients with Advanced Blood Cancers

Now this link is the most exciting for me as an IDH1 mutant glioma fighter. Word on the street is that Duke is working on a similar vaccine. It is literally a race for a possible cure. I hear that they're headed into phase II clinical trail very soon. YES!!!! So exciting. Here is a direct quote from the release, "Vaccination of humanized A2.DR1 transgenic mice bearing syngeneic IDH1R132H-mutated tumors resulted in a mutation-specific antitumor immune response and control of established tumors, which were infiltrated by IDH1R132H-specific T cells." (click for full abstract). So it looks like the vaccination was specifically targeting the IDH1 mutation and caused an anti-tumor response which I'm not sure if it caused a shrinkage of the tumor itself, but at minimum it looks like it stopped tumor growth. How fantastic is that!?! It's what we consider a miracle in our household! Now, of course, they start with mouse models, and we need to make sure that this vaccine is effective in humans with established tumors (as opposed to grafted/implanted tumors). Oh man, but to be getting this close to real treatments, real options, is absolutely thrilling. When I got those emails from Stephen, my eyes started watering, and my soul became weightless. It's just fantastic.

If you guys haven't had the chance to check out Astrocytoma Options, please take the time to check it out. It is the best wealth of knowledge, and research, and info on astrocytomas/gliomas. Stephen is a selfless genius and we are all very, very lucky that he cares for his friend so much that it turned into a passion to help her live a long healthy life after being diagnosed with a brain tumor, and now it has morphed into a goal to help other people survive.

You guys, let's do this! Let's keep surviving for a cure! That's all we have to do is be like Bond and live to die another day.