The Trial Begins

I’ve hesitated to write my blog for a couple of reasons. The first being I think I am depressed. Don’t know if this is due to the new drugs or just to the general state of my condition. The second reason is that my blood pressure will rise when I start to relive Wednesday, the day I officially began the study.

Actually, the study was sandwiched between two very nice events. Early in the day I went with two friends to the Art Museum to see an exhibit of fashions created by Roberto Capucci (http://www.philamuseum.org/exhibitions/411.html). Over eighty of his works were exhibited encompassing his entire career. His designs incorporated a wide spectrum of colors, incredible fabrics, and are more art forms than fashion. We then had lunch at the museum restaurant before heading off to Penn.

Thierry met me there, along with a research assistant who was anxiously awaiting my arrival. For some reason everyone was in a tizzy, worried that my blood work and EKG wouldn’t be completed in time for my scan. I had to throw a wrench into things by insisting that I be stuck only once – taking the blood from the access IV for the scan. I was quickly strapped into the EKG wires and someone was brought in to access my scarce veins. She was determined, and after what seemed like several minutes of digging, got the thing in.

A nurse handed me pills and paperwork and spouted off some instructions while all this was going on. By the time I got out of the little treatment room I started to become anxious – not feint – just teary.

We were then escorted to the basement where the scanning equipment is, only to find that we were scheduled to be in another building. Fortunately the buildings are connected by a series of walkways so we didn’t have to go out into the rain. The doc who was in charge of the scan was very nice. He did the injection and took his time answering my questions and explaining the procedure. We had to wait an hour after the injection before I could be scanned; the scan itself took about 30 minutes.

I was mentally exhausted when we left and went home and crashed for an hour. We later had dinner with friends which revived me a bit. Early Thursday morning I got a call from the research assistant (M) informing me that they did not perform the correct blood work and I would have to go back that day. I made it clear they would have to access my port if they wanted blood.

I checked in with the front desk and told them I was there for blood work. They said M would be up shortly to see me. She and I talked and she apologized for the mix-up with the scan – stating that I was in fact scheduled to have it done in that building. She again went over a few of the instructions and future blood work requirements, then left me in the waiting room. After sitting there for an hour, I went up to the receptionist at the desk to find out when I would be getting the tests done. She said I would have to talk to the triage nurse and pointed with her finger around the corner.

I went up to the triage nurse who for a few minutes just looked at me. Finally, after taking a phone call, she asked if I needed something. I began to explain the mix up with the tests and wondered when they might be calling me, stating that I had already been there over an hour. I didn’t tell here that everyone else around me had been called back for their various treatments. She looked up my chart and said that I was there to see M and that I saw M and that was all I was scheduled for. I explained again I was to have blood work done – she proceeded to repeat her statement. I told her she was going to have to call M and get it straightened out. She told me that they were very busy, she had 8 people ahead of me and that I could be there for over an hour. I told her that all I needed was to have blood drawn – which takes minutes – and that she should speak with M and let me know how long I would have to wait – since I wasn’t supposed to be there anyway. She suggested I go to the regular lab – I told her no, they were to access my port – which only a nurse can do. Needless to say, neither one of us were very happy. I was called about 15 minutes later.

What amazes me is; here I am, at a world renowned medical facility, in a medical trial, and the place appears so disorganized. I have such an unsettled feeling about all of this. I miss the girls in the oncology unit at Jeff, and I feel pretty much out there – alone.

The pills seem to be going down alright. Other than feeling a little tired and having minor flue-like symptoms later in the afternoon, I am okay. I do feel a bit depressed, and continue to have some intestinal discomfort (resulting from the tumors). I plan on doing something about the depression, and will try to remain focused. I feel bad for Thierry, though. When I get like this I don’t feel like talking – to anyone. I could just curl up in bed with some mind pabulum on the TV.

The week ended on a good note. Friday Thierry and I went out for dinner and had a delicious paella. We then went to the Kimmel Center to see the Orchestra National de France. Two of my favorite pieces were played, Debussy’s “La Mer” and Stravinsky’s “Rite of Spring”. This performance was part of the Philadelphia International Festival of the Arts – the theme of which is France. The Kimmel Center erected a replica of the Eiffel Tower covered in lights. As we were leaving the concert, we were entertained by a light and music show. It was much fun. I felt good and we had a really nice time.

Sunday we baked pastiche at my mother’s house; quite a production. Pastiche is a pastry that looks like a baked ravioli. We made the dough and ran it through a pasta machine. The dough is filled with a cheese filling and baked. It took us (Jean, Ann, Joan, Lauren and I) a few hours to make about 8 dozen pastiche. One person managed the dough, one person turned the wheel on the pasta machine, another stuffed and cut the pastries, another pinched the dough and another coated the pastiche with egg and manned the ovens. My sister tried to find out the history of this pastry and came up with a blank. It appears this is a Taraborelli original.

Now to get ready for Easter. Lauren and Mike will once again host both families – about 35 in all; something to look forward to.

PS: My friends have been wonderful and have been checking in on me and occupying my time. I don't mean to sound like all I do is sit and brood - there is just only so much one can write about, but I am every so greatful for those folks in my life.