Our picnic on Sunday turned out to be a very nice event, with BBQ, little humans, a dog, and many nice adults. I am only attaching one picture, mostly to show off Kathy’s beautiful smile.
The steroids just lasted me through Sunday, I had lots of energy was busy making sure that were enjoying themselves, even though me, the “worry ward” probably was more in the way than anything else :).
We had house guests the following 3 nights, which was also very nice, since I hadn’t seen them for a long time. However, on Monday evening some of the symptoms started coming back, despite the steroids. So far not the “super scary stuff,” but my balance/walking/dizziness are pretty bad right now.
Lucinha and I are at the Creative Capital Retreat now. It is hosted by an organization that provided me with a grant 3 years ago, and while “work,” a very nice event, especially since some of my fellow grantees are good friends.
On Sunday, we will proceed directly to Boston, to get “screened” for a trial at Harvard Medical. Robert will meet me there, and it looks like Frank from Switzerland might be joining as well. With Lucinha on top of that, I should be well protected!
Should I be accepted into the trial, we will leave Boston 2 days later, equipped with 2 weeks worth of pills, to be taken daily in New York. [They wouldn't go for my suggestion to just give me 5 weeks full of pills and leave to Europe the next day]. Assuming that I will tolerate those pills (and that all these symptoms I am having can be put under control), we will then return back to Boston for just 1 day 2 weeks later for a follow-up, get more pills, and leave on a plane to Europe. Right now, I have to admit this plan seems rather unrealistic, but I am not giving up just yet.
Robert and I had a lot planned for this fall, including an arts residency in Helsinki for August, my mother’s 70 birthday in Germany, and then sometime later a trip to the UK, India and Mexico. Sprinkled in between was supposed to be an art/workshop residency in New York. Keep your fingers crossed for me that I won’t just be hanging out in the hospital, getting another brain surgery instead. My biggest fear right now.
This is it for tonight,
I will be in touch, and if any of you don’t have, but would like Robert’s direct contact, please let me know.