Saturday, September 29, 2012

How To Keep Up When Things Are Happening Too Fast!?

I don't know how I'm supposed to keep up with this blog when so many things are happening! It doesn't help either that I'm half blind, and my computer keyboard is wavy and has spots!

I was going to write a lengthy account of NYU's ER and my clinical trial dismissal - but now I think I'll try to keep the account on the shorter side, so I can be more current and relevant.

NYU's ER wasn't as horrific as I had thought it would be.  I got filtered out of the waiting room pretty quickly.  Though I did spend quite some time in the ER room -from 4:00PM to 11PM. I ended up having a CT scan and three eye exams by three different doctors. Very, very young doctors I might add; one women who looked like she was 22, and some 27ish year old males. All three hovered around me in a discussion over a sonogram one of the doctors did of my eye. To me the image was disturbing and it looked very much like a retinal detachment (pictured in a previous blog entry) - but the three doctor's collective opinion was that it was just loose floating vitreous. I was really lucky that my great friend Stacy came to the ER just to keep me company. That helped the experience to be a better one, since it had been a long time since I've seen her. With her there the ER faded into the background and if we'd had a beer in our hands it would have been just like old times! It didn't matter where we were, it was just great getting back together!

Earlier while I was waiting to be seen - I got a bit of great news from the trial people. Seems that the drug company said they would foot the bill of my expenses for the trial. I was so happy that I still had a chance at the trial. I had been told to go to see a dermatologist in the morning and that I would need to be at the clinic for the beginning of the test. Since the eye wasn't looking like a detachment - things were really looking up for me.

After a relaxing evening with Mike and Suki, I prepared to meet the next day. I took a car service into the city this time -  no chances were going to be taken with me falling over in the subway. The dermatologist was quick and saw nothing of interest, which was a good thing! Next I was off to the clinic. I walked the three blocks, and it was the first time I actually felt connected; that I was indeed in NY.  As soon as I got to the clinic, they ran the blood work through the tests. It turned out that I was very low on Hemoglobin. My reading was 8.7 ( By the time I got back home at was at 7) It's supposed to be between 12 and 14!  No wonder I was so slow, light-headed and faint! I was very anemic. The trial people wanted to arrange a blood transfusion on a Saturday. I was like, OK what ever it takes! I'm sure I'll feel better! Then I asked to make sure the drug company was footing the bill on the transfusion- and the trial girl went white, stopped what she was doing and ran out of the room. A few moments later everyone, including the doctor running the trial came in the room. There were some somber faces and heavy sighs.  I looked them over and said, "You're all here to tell me I can't be part of the trial! Right?!"  All eyes were cast to the floor, except for the doctors, who said, the transfusion wasn't going to be paid for by the trial. She went on to say, that they were sorry I had spent the time and money coming up to NY, but I should just go home and get care there. That was the end of it!  To say I was devastated, is an understatement. I had tried so hard, I mean SO HARD to do everything I could to be a part of that trial and it wasn't working out. I had to re-adjust my thinking into being happy that I had tried so hard; and now I knew for a fact that treatment at home was the best thing out there for me. I could put it all behind me because I knew I did everything I could to get two more years out of life, but failed.

I got on the 2nd Ave. bus, got out at 13th street, then began my search for a dark bar to cry in. The problem was it was too early, 2:00! All my favorites wouldn't open til 4! I searched out Life Cafe (Thinking it'd be open for lunch) - But, no, it's closed; and I thought I'd settle for one of these new Hooka Bar's - but YUCK! I couldn't see myself weeping next to a giant Hooka Pipe. I thought of Lucy's -  closed, and the old Odessa - closed;  but the diner part of Odessa was open. So, I sat in the front booth to watch the Avenue A'ers parade in front of me as I drank back my beer and let out some tears. I was thinking about how the east village really hadn't changed. Just the people were younger versions of the same people that were out and about when I was around. Replacements. Replacements with more money.

Stacy met me at Odessa, which made things so much better. After a beer and fries with gravy on the side - we sat in Tompkins Square Park. It was such a nice late afternoon. We met up with a great painter and friend, Santino, at the Indian food place on 1st ave that has all the chile peppers hanging down in peoples plates. At first I was a bit worried that it would be a bit overwhelming for me, in my anemic and blind state - but once we were seated it was just a lovely evening. I didn't want it to end - but Stacy was smart and made sure I didn't over extend myself, and we ended up having the best time, the three of us, in Stacy's car driving back to Brooklyn. Nothing replaces meaningful conversation!

Mike and Suki took such great care of me that night and the next day - and I had a few visitors come by - Clare Harmon, and Ken Schles. I was feeling fragile, and Mike kept filling me up with fresh vegetable juices - keeping me topped up on some much needed energy, and nutriments. I was very thankful to have such good friends!

Mike and I went out that night to meet up with Brian Turner and Ryan Martin at a great Thai place called Zaab-Elee. Wow! What a great place and what a great evening! That was one of the highlights most definitely! The food was out of this world and the company couldn't have been better! Thanks Mike, Brian and Ryan for a great NY moment!


Happy Times!!!!!

Hard to say Goodbye!

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