Thursday, May 7, 2009

Lloyd Hates Veggies

Last Thursday was Lloyd’s most recent photoshoot, and I am pleased to announce that he has not done a thing lately. Nothing. Why he is quietly sitting still is a (very pleasant) mystery—perhaps he is lazy, or perhaps the influx of vegetables is holding him at bay. Whatever the reason, the result is that he is currently not growing, and this is a very, very good thing. The longer he waits to grow, the longer I have without needing further treatment, and the more research can be done to find a cure for this disease.

Speaking of cures, I got a widely circulated e-mail last month about a “secret” cure for cancer. Apparently, eating pureed canned asparagus twice daily is a (shh!) secret cure for cancer that has been known about by respected cancer programs since the late 1970’s. And here we thought they had our best interests at heart. I suppose if everyone knew about it, there wouldn’t be enough asparagus to go around. This must be why only the very important and powerful are cured of cancer. Just believe all of that, and never mind the fact that Ted Kennedy is about to die from my condition: He obviously didn’t have the resources to acquire the secret asparagus cure.

Tempting as it is to run out and buy 30 pounds of canned asparagus, I think I’ll stick to juicing some fruits and veggies a few times a week. It is so tempting to try anything—anything!—when you are panicked and desperate. I am lucky that I trust my doctors and my own mind. Or at least I trust my doctors and Mark’s mind—mine can be a little iffy these days.

I continue to have mini seizures, generally one or two a week. I usually know one is starting when something says “French detergent strip.” My brain is so weird. One of the things I enjoy trying to do now is to look at actual print while a seizure is happening. The letters totally change. For example, the cover of “Vogue” said “Charles.” I can now vocalize a little bit sometimes, and I like to try to say the words aloud for Mark. I can only manage to say maybe six or eight (out of hundreds or thousands, depending on the length of the seizure), but it feels like a victory, and they are usually quite funny.

Everything else is going well in our lives. I’m riding my Segway to work when the weather is nice enough (no drivers license required!), and I’m about to take my first trip without Mark. The National Federation of the Blind has been invited to be a part of the launch of the space shuttle, which will carry our Louis Braille coins to space, and I will be accompanying Dr. Maurer to Florida for this exciting event. I know I’ll get to see the launch, but what I’m hoping is to be able to smell it. From a safe distance, of course. I think the smell would be fascinating.

Thank you for taking the time to look in on us, and for caring about how we’re doing. I am doing really very well right now, and for the foreseeable future. Dr. G even asked, for the first time, how soon we wanted to come back. After the next two-month MRI, we may decide to wait a little longer in between. Now THAT is good news!

Love, -Kristina (& Mark)

Mark's parents came for a visit at the perfect time of year--the pear trees along our street bloom for only one week, and they are spectacular. This photo was taken just as a storm was blowing in. Once the wind picked up, the petals looked like snow falling outside the windows.