Blood Work, Bleach Baths, and Body Shots ... my first day at MDA

Blood Work, Bleach Baths, and Body Shots ... my first day at MDA, June 1, 2005
I had typed all my goings on today and then I lost it. So here is the brief edition:Saw dr. d. and here is what they are going to do.I need to have bone marrow test, CT scan of my entire body (yummy… that stuff they put in your veins makes you all toasty warm). And they hopefully will start photopheresis tomorrow..This is where they take all your white blood cells and they go to this tanning bed and little waiters take their orders for pina colada or white wine, then they come back to my body all happy No seriously here is what it is: Photopheresis, also known as extracorporeal photochemotherapy (ECP), is a form of apheresis therapy. It involves light-activated treatment of circulating blood cells outside the body. "Photopheresis may act by modifying the patient's own immune response to his/her disease. On this basis, the therapy is being extended to graft vs. host disease, organ transplantations, and early scleroderma and other autoimmune diseases." - roswellpark.org Here is how it’s down (you thought I was kidding!)Procedure outline:1) The patient ingests a light-activatable drug, called psoralen2) An IV (intravenous) line is placed in the patient, a drug called psoralen is sometimes given.3) Blood is temporarily removed from the patients. White blood cells and are separated out and the mixed outside the body with the patient's plasma, saline, heparin, and 8-methoxyposoralen. The preparation is then passed through a device where it is exposed to ultraviolet light. 4) The treated mixture and untreated blood is combined and returned to the patient. The procedure takes approximately 4 hours. I will have done every 3 weeks and it takes 2 days and can only be done here at MDA. We don’t’ have no tanning beds for white cells in Austin!I’m going to be taking Interferon shots. They build up your immune system but make you feel like you have the flu! Make sense to me! I take those 3 x a week. Next week I’ll take Targretine pills all this is to make my immune system better. If I get better we may not have to do chemo. But at least this will get my body in better shape for chemo.Also, I take bath with ¼ cup bleach every other day, get sprayed down with vinegar/water mixture and then slather this cream all over me, while keith is soaking towels in warm water that he will then wrap me in for 20 minutes. Suppose to help me w/my itching/dry skin. Dr. D said I’m cold all the time because my skin is not doing anything it’s suppose to do… like maintain heat! Also, she said she sometimes will put people with level of staph infection in the hospital, doesn’t think she will with me. I gave blood twice today… once for the record and second time because I signed up to be part of the clinical research. Didn’t realize what paper I was signing.And then I got my playboy shots. Yep, they took pictures of me in my almost birthday suit! Ok I’m off to soak in some bleach… I’ll get white one way or another.