Thursday, January 8, 2009
Subject: Lloyd in winter
Hello, all. Today was a Doctor Day, so I thought I'd write with a little Lloyd news. We had the second of our 2 month follow-up MRI's today, which was officially the first to show us how fast Lloyd grows. Or, as I prefer, how lazy he is. The news? He is a lazy, lazy guy. My MRI showed "no significant growth," and my oncologist (who is known for his ability to upset me even over the most cheerful of news), actually used the phrase "rock solid" to describe my current status. This is what we've been hoping for—and all of the tests had hinted we'd find—Lloyd is (currently) very slow growing. Dr. G, of course, had to throw in that radiation is not a maybe, but only a when—“a matter of timing," he said. However, I'll take the later rather than the sooner and be happy with it!
That is the good news. The frustrating news is that I had another seizure in early December & have had about 5 more over the last 4 weeks. I don't lose consciousness, memory, or awareness, so I didn't even realize it was a seizure at first. Clearly something was very wrong, but I didn’t realize it was a proper “seizure.” The things you learn when you get a disease, right? What happens is that I suddenly start seeing written words where there are none. They are relevant to the object—for example, one day I was pinning a green dress and suddenly the words “green”, “fabric”, “garment”, etc. started appearing on it. Words start showing up on everything I see in a stream-of-conscious way, one leading into another; sometimes in ways that only make sense to me (“blue” might lead into “porch” because my grandparent’s porch was painted blue). In addition, while these words are racing around, I can’t speak any of them. Or write. I can’t express myself in language at all—I just have to wait until it passes. The real trick is to stay calm, because as soon as it starts happening my stomach hits the floor in terror & suddenly I’ve just made things a hundred times worse with plain old panic. The first of these new seizures left me unable to read for about a day, though the subsequent ones haven’t really done that. They do affect my vocabulary for a few days each time, which is super frustrating. And my spelling ability- grrr. Couldn’t I just have the cancer without the idiot sprinkles on top? Lol. Fortunately, my boss & coworkers have been very forgiving of my occasional loss of language/grammar abilities, and I am very, very happy to be back at work. Dr. G decided today to increase my anti-seizure medicine by 50%, so hopefully I’ll be right as rain very soon. He did, however, decline to sign my required Maryland paperwork for re-application for my driver’s license until I’ve gone another 3 months with no seizures.
That about wraps up the Lloyd news right now. We had a lovely holiday season- we spent Thanksgiving with Mark’s family in Boston, we had a vacation to London the week before Christmas, and we spent Christmas with my family. My sister is due with her first child in March, so it is a perfect timing for Lloyd to stop hogging the spotlight. Does the possibility of seizures get me out of any diaper duty? I wonder what words I’d see there…
Thank you all for your continuing support—this whole situation, while calming down at present, isn’t going anywhere, and it is a huge help to know we have so many wonderful people in our life. We appreciate the thoughts and prayers, and we especially appreciate the ability to laugh at this whenever possible. Thank you all for caring about us. You have helped us more than you will probably ever know.
Love,
Kristina & Mark
Attached is a photo from our trip. Some of the many churches that got bombed in the blitz are now urban gardens. We found this one empty while out walking in the old city one day.
