Suomenlinna

Dear All,

Suomenlinna, the island we are on right now (right in front of Helsinki) is incredibly beautiful, clear clean fresh cool air, quiet (!) all of it. The first few days I wasn’t able to notice any of it, walking around like a “symptomatic zombie.” But things got better and I am getting around a little. We also have a balcony here, so if everything else fails I just sit there.
Since things seemed to get better I tried to get off the steroids, but was punished with immediate wake-up headaches and running into walls activities. I guess if I have to be on for now. Steroids are doing the usual not able to sleep while very tired, face swelling + bad skin (not vanity compatible) thing. Lucinha, is in heaven as predicted, swimming in the ocean every day, running around off leash and developing a nasty habit off eating wild geese poop.

All my best,
Shani/Beatriz

We are off!

Dear All,

We are off to what is left of our art residency in Finland. I got all depressed last night, that what was supposed to be a month of work in beautiful surroundings, got shrunk down to 12 days and I am physically feeling rather “symptomatic.” But I am hoping that things might improve a little while there, or otherwise I will find a way to sit outside by the water, so I will be safe and can still enjoy the view. Lucinha is helping me walk now, and unless I have a “human Lucinha” with me, I don’t dare to leave the apartment anymore. But she is quite the trooper, and still a playful puppy when not on duty. She will love the island and I am happy about that.
After our 12 day stint we will now only have 4 days in Germany, but I’ll make my mother’s birthday party, so thats a good thing.
I will *not* be able to go to Documenta though, so for anyone who is there or goes, I’d love some pictures. I hear its quite good, and I have a tiny little something in the “Worldly House.”

The trial isn’t affecting me too much, its the other drugs and disease itself I am afraid. Frank who was here from Switzerland over the past 2 weeks helped Robert me a lot, and now I think I need 2 people all the time! Seems to take two humans (+me) and one just to take care of me!! Ayay. (below bad pic of Lucinha at the subway station)

I hope everyone is enjoying their summer,

All best,
Shani/Beatriz

Searching for Advice

Dear All,

Frank, Robert, Lucinha and I are back from Boston in crazy NYC. Good news: I got into the trial. Its a long shot, but its a shot.
More good news: I met a *very* nice and seemingly very competent medical oncologist at New York University Medical, and he and I developed a back-up plan, in case Neratinib (the trial drug), won’t do the trick. I still feel like I am racing against time, but this new oncologist really calmed me down overall, and thats a good thing. Anxiety still seems to be persecuting me all the time though, and at this point I could use some advice:

I have known (and so do most people in the cancer circles I think) for 20 years that marijuana isn’t just a recreational drug, but also helps with a lot of cancer (and other disease-related) symptoms and treatment side effects. At this point I pretty much full-fill all of them (anxiety, insomnia, pain,inflammation, and nausea). In California it would be very easy to get a medical marijuana license, but in New York, they still don’t have a licensing system in place. If anyone knows about a (legal) work-around, please let me know. I haven’t been interested in this route over the past 3 years, but now I am. I couldn’t smoke anything, but those hash brownies might be worth trying (which I never have in my life by the way. I guess thats kind of embarrassing, but then again, I had so many licit strong drugs in my youth, I just had no desire to add anything else.)

If you have any ideas, please contact me off this blog.

Below are a couple of pictures of Lucinha and me on the history/tourist trail in Boston (Democratic Donkey) and on the drive back the “Plymouth Rock.”

Many hugs,

Shani/B.