Human Guinea Pig

Hi dudes. As most of you know I am currently participating in a clinical trial at NYU for an experimental drug for my psoriasis. This is a documentation taken from my journal. I know this is very long but I promise it's worth reading. All of the information contained is true. smooch.

November 12th, 2008- I reach what many call "the breaking point". I'm standing in my apartment bathroom. I should be happy. I've finally made it to New York. I have really good friends, lot's of writing inspo and a 4 inch thick posturpedic memory foam mattress pad. I should be happy. I should be happy. I rub the concealer from my cheek. Dry, flaky red circles appear. I bend my right arm. I look to see the crease break open and bleed. I should have expected that. I take off my shirt. I pick up the hand mirror and turn around. My back is a splotchy mess. Dried blood speckles some of the white spots. I pick up my hair and see what has been preventing me from my favorite jaunty ponytails...plaques, spots, redness, scales whatever you call them ... they're all over. Really bad this time. It's a beautiful Fall in Brooklyn and my psoriasis is the ugliest it's been since high school. I pad back to my room and pull back my covers in defeat... I'll sleep all day again. It's snowed in my bed I guess because they'res white stuff everywhere! This is it. I open my secret waitressing dough stash and count ... maybe six hundred dollars. This can definitely get me in with a great NYC dermatologist. I call my mom for sympathy, I have a plan.
4pm- My mother, the angel that she is told me she has researched and found the best derm in the country and he's right here in New York. Better yet, she offers to pick up the tab! Gotta love her!

November 17th- My appointment with Dr. Bruce Strober. I hail a livery cab to the NYU medical center. My driver is very nice and asks me what I'm going to eat for lunch. I don't know. He told me he's saving up his tips for two pieces of pizza. His cab smells good and leathery. I aks him what phrase he hears more in a days work 1. step on it or 2. keep the change. He doesn't know. I take the elevator to the dermatology department and sit next to a woman turning the pages of People with white cotton gloves on. I have never had psoriasis on my hands and I am really very thankful for this. Before I go in for examination, the lovely receptionist informs me before I go in that the minimum the appointment will cost FOUR HUNDRED DOLLARS! She's looking at me all decked out with my dirty white boots and technicolor hair streaky hair, thinking that I'm going to head for the hills. I calmly sit back down and wait. Dr. Strober enters the exam room. He's middle aged and good-looking with a round irish face and a kittenish jew-fro. A female aid enters also. From years of having this disease I know this means I'm going to have to get naked. I take down my hospital gown and as Strober examines the various parts of my body he rattles off a series of three consecutive numbers as he goes from area to area. The large Afro-American aide jots them down on the grid before her. As he approaches my scalp I inform him that i have a few extensions glued to my head. I self conciously report that this probably isn't good for my scalp and his aide sounds of an aggreeing "MMMMMMM uhhh HUH!" When the exam is complete and I'm back in my clothes our consultation begins with his explanation of the numbers game. He's used them to calculate the percentage and severity of my psoriasis. I am at a 70. History shows up and I paint a vivid psoriasis portrait... tar tubs at age 2, vacations to the beach spelling out skin-ulterior motives, having to give up varisty volleyball to drive 30 miles three times a week for 30 second intervals of light therapy. Enough creams and oils to lube the San Fernando valley for a year. Phew! Since two months old, I've dealt with this and I wil not take it anymore! Strober can very obviously guess my financial situation and with no health insurance, I wasn't facing many options. Right to the table it comes, a clinical trial. Right here at NYU. As a human gunea pig I test out an experimental medicine not on the market yet. A biologic immuno-suppressant that I inject myself with 3 days a week. It's in Phase 3 of the trial which means the medicine has a very small chance of being lethal although effectiveness and side-effects are relatively unknown. I think Strober is surprised at how little coaxing I need to sign up. After being told my appontment was reduced to THIRTY FIVE DOLLARS I'm sent with a note downstairs. As I walk to the Dermapharmacology department the first set of nerves sets in. My only real concern is how it might negatively affect my brain function, we all know what a creative genius I am! If I lose a limb or an eye, as long as I can wear a tank top in June... hello dolly! I am also concerned that it might make me fat and if I'm some huge porker trying to squeeze through the turnstyles at Court Street then no tank tops for me! After signing my life away to Abbott Pharmacutical Supercorporation I'm sent to imaging for a chest x-ray to make sure I don't have tuberculosis. Over to the 7th floor I go for an EKG. Turns out if my ticker and lungs are in good shape, I'm good to go! After hauling myself around NYU all day I go to the cafeteria and choose a nice beef frank. Some old lady in front of me is taking forever at the condiment station. She's too cute to shove aside (like I most frequently do at the coffee bar) so I circle the soup island for a bit looking for cute medical student scrub butt outlines. The place is mobbed and there's not an empty table or seat to find. I turn the corner and see the old hot dog lady, she's sitting alone. I sit with her and smile at the three pounds of sourkraut shes shoving in her little dentured mouth. Back at my apartment I read over the paperwork. I can quit the trial at any time. I will be compensated fifty dollars for each trial visit I complete which barely covers a livery cab there and back. I must agree to use two forms of birth control for the span of the study. This part is emphasized in three pages. I am also advised that consuming alcohol during the study is considered dangerous due to lowered metabolic reaction in my liver. I am going to do this.

November 17- A call I receive from my study coordinator advising me that i am in perfect health and I am eligible for the study. November 19- Back at NYU for my first real trial appointment . My study coordinator is a large blonde Puerto Rican woman named Liz. She has the personality that most PR women have, a big warm personality peppered with sass that just explodes all over you. You know her, that girlfriend you had in High School that all the guys loved. Not for her pudgy little tummy or oragey dye job, not the promise of touching her back-pocket-less jeans, for the love of her boisterous, loud and loving companionship. Liz gives me my first of three injections. A veil of white goes over my field of vision. I wake up on the exam table, with a chocolate biscotti in my hand. Liz's hands are over her mouth. The study doctor is looking over me with a wrinked brow. I apologize for I have never passed out in my life. I am given 4 sealed unmarked boxes containing 2 syringes each. The labels on them state that they can contain 50 mg of ABT-874 OR placebo. I am instructed on how to inject myself. I can choose my thigh or stomach. I have to do this twice a week for three months.

November 27th is Thanksgiving and the day of my first self-injection. As I sit with a platter of mushy foods on my lap I watch my Uncle Skipper sit on a hospital bed in his living room. He is quickly dying of spinal, brain, and lung cancer. He saw a doctor a few weeks earlier for feeling ill and today he sits hunched over, unable to speak or move. He is 42 years old. My Aunt and dad retreat to the back porch for frequent cigarette breaks. I am alone with Uncle Skip. I move towards him. The blanket over his arm falls to reveal the tattoo I had loved to look at as a kid. Bart Simpson with a caption above "well you're damned if you do and you're damned if you don't". This is the last day I'll see Uncle Skip alive. As my father drives us home through the orange-tinged Zinc mining hills of Allentown I ponder if sacrificing my health for the sake of vanity is worth the risk. Later I sit on my toilet, needle in hand and in my head is "well you're damned if you do ...."

Dec. 2- I'm becoming quite the pro at self injections. Smoking a little bit of weed beforehand seems to lessen the sensitivity of my skin. When I'm finished, I walk to the bodega for an Ice Cream Snickers or pack of plain Lays, a treat for being brave. Dec. 15- I see no improvement whatsoever. I am convinced I am on the placebo and all of this is just a waste. After injecting myself last week, a small drop of medicine hung from the needle tip. The placebo is supposedly a sugar water right? I lift to my mouth and drop on my tongue. A chemical taste spreads through my mouth. At my next study visit, Liz shows me pictures of my naked body that showed minimal but marked improvement.

Dec. 20- I can't stand any of the girls I work with except for this one Australian girl who is very flirtacious and friendly. She got all pouty when I refuse to do a JagerBomb with her so I tell her I'm on a experimental trial drug that prohibits me from drinking alcohol. She comes in two days later telling me theres this really funny show on TV called Testees where 2 guys make a living by using experimental drugs. I don't know how this show can be funny but after I see an episode where they lose their sight, I'm hooked and love it even more when I realize Kenny Hotz from Kenny vs. Spenny makes cameo appearances! Most people participate in clinical trials to make lotsa dough, I was making close to nothing but the idea of expediting a new medicine to the market to help spotty kids like me really makes my day! Awwwwwwwww!

January 2- My "lesions" show improvement. Although red, they seem to be flattening and when I run my hands over my skin in the dark, it almost feels normal. Refusing alcohol is proving to be almost impossible. (I will continue to update as I improve (or not). thanks for reading... as always)