A few decisions post-picnic

Dear All,

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.

All best,

Scary Times

Dear All,

Well, things started turning a bit dire this week, since I became what is called “symptomatic” in cancer speak. I started loosing my vision, couldn’t speak properly, couldn’t type on my computer (I am a fast 10 finger blind typer, under normal circumstances) and turned dyslexic. The next day the whole world turned into slow motion, and as I was walking out around I thought I was inside a movie trailer for a Science Fiction movie (and no, for those of you who enjoyed hallucinogens in their youth, its not fun at all), but kind of interesting I admit, just very disturbing at the same time. I also fell flat down on the street for the first time – scary. Lucinha made sure I got up alright (well OK, maybe Robert helped a little) and wouldn’t leave my side even though I dropped the leash during the who incident. Wonderful pup. I am not really a religious person, but if there was such a thing as God, I know that s/he is sending me energy through her.

Anyhow, I am back on steroids for a few days, and for once I am thankful for those drugs, I can type again, my vision is just a little blurry from lack of sleep (steroids take your sleep and even render you a little “manic”), but frankly thats nothing compared to the events earlier this week. This sunday we have a picnic planned a little north of NYC and for a while I didn’t know what to celebrate, it couldn’t be the “scan result celebration” I had hoped for, I just am calling it a celebration of friendship. Right now I think it will be a celebration of dodging the bullet of feeling “symptomatic” at least for the time being. I know that not all of you will be able to join, but you are in my heart and I will be thinking of you. The fight for survival is not won alone, and you have all been there with me in your own special ways, and I am very thankful for that.

I know that some of you are eager to hear about my next treatment steps. I will write more about that next week. We are still in the process of confirming the opportunity of joining an investigational drug trial at Harvard Medical.

More soon,
from Shani/Beatriz, who loves the fact that it is raining in New York today. Sometimes it just feels so cozy to me.

something nice as well

ohps, this was supposed to go out yesterday.

Dear All,
Thank you so much for all the emails and messages some of you have already sent. It feels good to know that I have friends out there who care and are “lending me a hand” on this path, that really hasn’t been all that easy.

Not sure how well I’ll be able to respond over the next few days, but will do my best.
Much love

Below a few pictures of Lucinha having fun at the getaway camp. She seems to be my lifeline right now. Next time I have to go to the hospital, she will come with me.

Well ..

The news are not so good. No new tumors, nothing in my body, but those two tumors in my brain that keep on growing. Bottom line, current treatment failed. We are digesting and will be reassembling to see which route to take now.
I hope everyone is well,

All best,