Sunday, September 16, 2012

I ♥ NY

Most all  my NY photos were taken from the inside of a car.

Day one:

Well, I don't really know where to begin with this one...For those of you who don't know, I tried sooooo incredibly hard to get into a clinical trial for Zelboraf with a MEK inhibitor. I had some big stumbling blocks on the way - like a brain tumor that had to be zapped, but I was so anxious about being part of the trial, nothing else seemed to matter. The brain tumor was just something that set me back by three weeks! I only saw it as a small obstacle! Once the tumor had been deemed stabilized (really it was gone) I had the green light to go to the trial's screening process. The Friday of Labor Day weekend I noticed that my peripheral vision had gone. I was at the fabric store in Durham getting items to finish off my sun proof ponchos and ducked into a dark Chinese restaurant. While slurping up my hot and sour soup I noticed the man sitting to my left had disappeared!  What?! I turned my head, and there he was wrangling his chop sticks like a pro. I turned back to my soup, and he disappeared again! I got on the phone to Durham Eye Center to try to get them to see me right away - but as it was getting late in the day they couldn't arrange it. They tried to set me up with an appointment in Raleigh that next Tuesday - Monday was Labor Day, and I was set to leave for NY on Wednesday. I knew I'd be seeing an opthomoligist appointed by the trial so I let it slide, keeping Tuesday for errand running.

I was happy to be staying with Suki Hawley and Mike Galinsky who took incredibly good care of me. I was picked up at the airport and visited with them and their two sweet kids that evening. I was super nervous about my appointment the next day - which was the first day of school for Fiona and Harper, that was nerve wrecking enough for Suki and Mike; and to add me into it, what a crazy Thursday it was going to be! I intended to go alone into the city for my appointment - but Suki said she would come with me after the kids were dropped off. Wow! I'm very grateful she did come.

I suppose all the travel and worry, the fast pace of the city, added with the heat and humidity just piled up on me - everything turned to slow motion. I got weaker and weaker with every step I took towards the Clinton/Washington subway station where I was to meet up with Suki. We took the G to the Metropolitan Station, and by that time I was gasping for air. It was hard for Suki to keep my pace because I was walking so slow. People blurred as they rushed past us. I'd done that ride years ago, over and over again; steps, tunnel, steps, long walk, steps, platform, train, steps, etc. But now it was just way too much for me. On the platform waiting for the L train I glazed over and told Suki to watch me. I shimmied against one of those tall stainless steel electrical boxes and just about went down. Thank god I had Suki to keep me on this side of this world. We made it on the train and all the way to Third Avenue, where it was our intention to take the bus to 34th Street. Outside on the corner looking at the huge city, I felt overwhelmed again and sought out a fire-hydrant that was sticking out the side of a drug store to sit on. While I sat - Suki dashed to get me some water. Again, Suki kept me on this side of blackness. Thank you Suki! I saw a banana waving in front of my face. A bite of it and a drink of water gave me strength to go on - but this time in a cab! I had turned into one giant glob of sweat!

I registered as a new paient at NYU Langone Medical Center and it took ages for me to settle down. I felt like mercury beads slowly coming back together in a Sci-Fi movie; after an hour I became  whole again. Suki stayed with me while the trial manager talked me through the process and walked me through the contract. I signed and initialed each page. They gave me an itinerary of appointments and I was ready and willing to do it all - anything I could do, so I could live longer with the inhibitor drug. I had mentioned my eye to them before I had arrived in NY, so they asked me about it. I told them my peripheral was going in and out and they wanted me to see an opthamologist right away.  This is where we hit our first snag. The trial opthamologist was out of town so the set me up with a Dr that would have cost me $1,400.00 out of pocket. He existed outside the trial approved physicians.

The trial manager sent a new person in to talk to me and pretty much said that the trial was going to be too expensive for me, and I should consider going back home. She said that I could go to the ER and have my eye checked out there to see if I had a detached retina (that would keep me out of the trial) and she was going to see if the drug company would foot the cost of all the trial.

I didn't like the sound of going to the NYU ER. Who wants to go to an ER?! I felt faint and was going to walk the three blocks but I didn't trust I could make it without Suki who had to get to a business meeting. So I waited for the bus. I climbed aboard and tried shoving my metrocard into the slot - but it had been covered with tape. The driver said to me, "Where have you been?" I said, "Away for six years! I'm going to the ER." He explained how I was to use the machines at the bus stop and get a receipt to show. Gawd! It took me forever to make my transaction. I turned around expecting the bus to be gone - but there he was patiently waiting for me. I rode the three blocks and he pointed out the ER entrance. New Yorkers are nice!

I'll write the next instalment while at the clinic tomorrow. I have a hemoglobin check, a talk with my Oncologist's PA about Zelboraf's side effects, a session with my cancer counselor, a moment with the Duke finance department, and an appointment with the Pre-Op team about Tuesday's surgery. Oh! And a phone call with my new eye surgeon!  It'll be a full day! Whew!

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