Update 3...Thursday and Friday at MDA

I’ve been prodded, poked, scanned and stuck so many times over the past 3 days, I feel like a voodoo doll. Sorry its taken me so long to give you guys an update but Keith (aka Dick) and I (aka Lisa) landed at MDA at 8:45 am last Thursday, June 2 and didn’t leave until 9:15 pm. Needless to say with only some chicken noodle soup in my stomach since noon that day, because of my cat scan, I was starving and so was Keith. But more about that later.My day: June 2nd: I had an appt. with a doctor talk about my photopheresis (remember where my white blood cells get to party in the tanning bed?) at 9 am. However when we went to the front desk to get my schedule it showed a chest x-ray for 9:00. Well someone told me Dr. Duvic wanted every test repeated and boy did they mean it because I’ve had TWO chest x-rays since March. Tip: If you ever come to MDA and they ask you to bring your films from scans or x-rays, call your doctor’s nurse and see if the Dr. will REALLY look at them! Keith and I carried them around all day the first day and no one ever asked to see them!The different clinics are very forgiving if you don’t make your scheduled appointment on time… its just a guideline we quickly learned! Thus, because we really wanted to talk to someone about the photopheresis, we went to the 8th floor to speak w/the doctor who we had an appt. with. But alas, the doctor I was to meet with wasn’t even scheduled to work that day. So we played talk to the scheduler. Needless to say that wasted about an hour, but in the meantime I did get my chest x-ray while they figured it out. Fortunately everyone is so helpful and nice that the mess-ups really didn’t get me down and when we got back from my x-ray, we were told yes I could start the photopheresis. That was a real blessing, because my scheduled worked out that I could have the 2 day treatment that day and Friday, which meant we didn’t have to come back the following week. We hung out at the photopheresis lab waiting for a doctor to give the ok for my treatment. Finally they decided to just let me do it and then have the doctor come talk with me. But first I discovered I have to give blood before each photopheresis to see if my hemoglobin or heroglobin is ok. Did I mention I hate having my blood drawn? Actually, what I really dislike is having needles stuck in me by people who think that doing it real slow and saying, “now this is going to sting...” or my favorite: “a small stick” makes it better! So after a blood draw, some soup and I settled into my first session of photopheresis. It wasn’t too bad. I laid (layed? I can never get that right!) in a comfy bed with my arm (see photo at end of this trirad under photos) stretched out, palm up with tubes stuck in me that takes the blood out, spins it around, and puts it back in minus the whie blood cells... for 6 cycles. When the 6th cycle is finished and it has taken all my white blood cells it can manage, and put them in a little bag, then the bag empties into the tanning booth (it’s kind of like the Krispy Kreme, donut conveyor belt… or that snaking line at any amusement park. Its really neat in that the machine can tell how long your wbc need to be in the tanning salon. On Thursday they went thru the bed for 32 minutes. Then on Friday, it took 56 minutes! Guess they heard about the great party the others had on Thursday. All you can feel is when the machine is pumping out blood a thumping where (they tell me) the needle is hitting the top of my vein. While my blood was being washed, Keith and I watched a movie… The Phoenix, it was pretty good. I wanted to watch the Notebook, but we weren’t sure how my sobbing loudly would affect me or the people around me. I’m really blessed to have good veins and had a pretty good pumping rate, thus making the process go faster. Finally we got to see a doctor who explained more of the process I was undergoing. The best news is he thinks in about 12 procedures (a procedure is one day’s worth) I should see a reduction in my itching!!! So I’ll schedule treatments, every 3 weeks for 2 days until who knows when. One thing Dr. D. said that if we can keep me in remission with just the photopheresis. They say this cancer can never be “cured”, but they don’t know MY God!!!So I’ll continue to go to Houston every 3 weeks for my photopheresis, give myself Interferon shots 3xs a week, take my Targretin pills 3x a day (at $30/pill… thank heavens for insurance1), soak in bleach every other day and coat myself in Triamcinolone cream and then wrap myself in warm towels every night! Whew makes me tired just thinking about it! I’m doing amazingly well. The shots have not made me ill, or even a little bit fluey as they said it would. I do find myself getting tired more easily, so I’m trying not to be me, and get some rest, slow down, and go to bed at a reasonable hour! \Now for my top 10 reasons why I know prayer works:10. I’m no longer yelling at my kids so my eldest no longer has to say “I forgive you mom for saying the D word”9. When I shave my legs, I actually see hair on the razor rather than dead skin!8. My dry skin is greatly reduced!7. The itching is a bit better. Keith says I’m not scratching so frantically!6. I’ve not had any of the side affects they say I would have.5. When Keith held my hand the other day, he said, wow it actually feels smooth.4. When Alex put lotion on my back, she said the same thing. (didn’t realize I was like a lizard!)3. I think I see spots of the real “me” (color) beginning to show!2. Thru this process since I’ve had my blood pressure taken so many times, I realize I don’t need my hypertension meds anymore … my blood pressure is running 118/68 with out my meds! And the number reason I know prayer works1. Since I’ve been off the bp medicine, I’m not near as cold!!!!Thanks again for all your love, prayers, encouragements, and offers to help… I could go on and on. Again feel free to pass this on. If you want to be in my “special” e-mail list to make sure you get my updates, see the link below. Love you guys, and keep praying! God is being so incredibly gracious to me. We are going confound the medical field when I’m cured!!!!P.S. I’ve not proofed this like I should, but I’m tired now ;) and hope you will overlook any faux pas. . (yes Debra it’s true, I didn’t read it out loud or take a piece of paper and go line by line!)