I was pretty much occupied with going to Durham as one of the guinea pigs in a research project conducted by a research physician who works for both Duke University Hospital and the VA Hospital in the rheumatology arena. The professional young doctor doing the research and I were in each other's company for about an hour off and on yesterday, and as part of her efforts to relax me and make easy conversation while she was cutting on me, she told me why she chose to do research over being a family doctor.
Her decision not to become a family doctor certainly wasn't because she doesn't have a great bedside manner. She seemed to know automagically that I would wanna know all the details of what was going to happen, and because she didn't have a hundred patients waiting to see her like a doctor serving the public would, she took her time and explained the entire process to me in layman's terms. She seemed very sincere about wanting to know if I had any questions.
I trusted her as a person on first sight over at the VA when I had my first appointment there in the rheumatology section. I wasn't as sure about trusting her as a physician doing research. I don't think it would have mattered if it had been another doctor, it wasn't about personality, I just didn't like the idea of being used to test out new medicines. It turned out that wasn't what her research was about.
Her research was about rheumatoid arthritis and diabetes. I probably still don't understand the specificity of it, but I wasn't gonna have to take no strange, unproven drugs. The VA rheumatologist, who was my assigned doctor there in Durham, first solicited me in her behalf (as I understand it), briefly told me what her research was about, but that's not what I heard him say. Then, the research doctor herself came in during my appointment with him, and asked me in person if I would volunteer to participate in her research. That was the only time I actually saw her previous to yesterday.
To expose what a confused state I was in, I remembered her being taller than me at our initial encounter. Yesterday, I realized she is an average female height. I also thought she was gonna take bone marrow for the biopsy instead of muscle tissue. It wasn't true, but that's what I heard. I hadn't been aware I had been diagnosed with an incurable disease, and here were two doctors chatting it up as an accepted fact. Whoa! Time out!
After I got home from my first appointment last August, my case doctor called me at home to see how things were going, and he asked me again if I'd do the research program. I turned him down again. I didn't understand, and I gotta possess that understanding or I'll feign dissembling just to heel the tack. Don't ask me why. I'll write a bunch of fairly interesting word salad and you won't be any closer to the truth than I was.
I've written about this before, so I'll try not to contradict my former opinions, but shit happens and things change. I did change my mind about doing the research program, but it was more about being selfish than a martyr for the good of mankind. I tried to work it up to appear that way, but the whole idea didn't have legs.
I took what i thought they had told me and put it together with some information I read about in the news online, and made that into her doing some research involving stem cells. Why would I not? I am is a desperate man, and in denial to beat the band. I go for the stem cell possibilities and everything it stands for hook, line, and sinker. The stem cell research can't possibly live up to my expectations of it. That's the real reason I got back in touch with my doctor about approaching the research physician to see if I was still an viable candidate. She called me fairly quick, elegantly displayed her lady-like virtues, and seemed really grateful that I'd reconsidered. I was totally out-classed by this sophisticate person. I capitulated like a grateful, starving animal for her unaffected kindness. How could I have ever said, "No"?
This research doctor's second explanation, when she called me to say I'd be a great candidate for her research, made sense to me. She wasn't doing stem cell research, but it was about diabetes as it's associated with rheumatoid arthritis, and she was having a hard time finding people who have been diagnosed with RA, but don't have diabetes, enough to get a quorum. Finding people to serve as control group was less difficult she told me, but finding diagnosed arthritics who don't have diabetes is like a needle in a haystack thing.
I think my first refusal to participate in the research was a symptom of my denying that I've been diagnosed with an incurable disease. Even though I have experienced some of the worst physical pain ever in my life, I have refused to consider that I was gonna be dealing with this disease until I croak. I'm not gonna get over it. It might not deliver the killing blow, but it's not going away. Who needs that?
The turning point in changing my mind was when I realized that anything this person could do to help people like me who have the disease, is something I oughta volunteer to be a part of. Realizing she was doing the research directly involving rheumatoid arthritis has gotta be a good thing, right? Who am I?
Tomorrow, I go back to Durham for the next phase of the research. They gonna stick an IV in my small-veined arms and drip some glucose in me to see how I react I guess. I've already been told that they can't use the veins that stand out on the backs of my hands, but have to go in the veins located inside at my elbow. They hardly ever get the needle in the first vein they pick the first time they try. It's not going to be a small needle either. The technician and the doctor (who unfortunately won't be there tomorrow) had a five-minute discussion about it right in front of me. They didn't ask my opinion about needle sizes. I sorta had one, but they never asked.
The physician told me that the part of the process in which I might feel "discomfort" was over after she cut a hole in my leg and took out some muscle tissue. But, for me it ain't over until it's over. After they take that IV out tomorrow, I'll know whether or not I agree with her. She asked me yesterday to assess whether the process was better or worse than I had expected before it began, and I couldn't really answer. I don't experience things in real time. We've been e-mailing schedules and directions, so I'll probably write her next week to tell her what I concluded.
After my appointment tomorrow I have to wear a motion sensor for twelve hours a day for five days and send it back to her by prepaid mail. It just records any movements I make during the day like a pedometer works. Then, when I send that little machine back to in the mail, my part in the research will be over, and I'll be paid $200 eventually, so it's not like I'm a martyr yet. Despite the fact that I might have done it for noble purposes alone, it would be stupid to act like I can afford to pay my expenses out of pocket from my Social Security check alone. Finding that I can still negotiate the logistics of a trip like this at seventy years old is good for my ego.
I do not attempt to tell the God's own truth here because I don't know what the truth is or hardly ever. I try to capture the drifting thoughts that randomly appear in my imagination for reasons I may not understand. I don't know if the content I capture with these words is true or false. The Comments settings are turned off to prevent me from having to defend what amounts to little more than fanciful, sometime crude speculation. Great moments in our lives never return.
