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,
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,
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.”