I just finished day 2 of the pre transplant work-up. Today was the Ass-Tap and Lumbar Puncture. If you remember this was with "conscious sedation." What a crock! I felt out of it for a mear 47 seconds. They are only allowed to give x cc's of the drug. My pleas of me being a stout fellow went unheard. So, my usual set of explicatives flew during the aspiration. The core sample was not too bad.
So, once that was done, they went to the Lumbar Puncture to get a spinal fluid sample. I mentioned to the Nurse PA that Dr. "More Numbing Medicine" Wang always used a 6" needle--again since I am of stout and hardy nature. Well, we only have 3" needles. Anything larger needs to be done in the radiology lab with the fluroscope. Well, that is how they were always done at GBMC. hmmmm. Maybe GBMC was on to something...but I digress. The PAs decided to give it a try--me in the fetal position in the shape of stretching cat. Needless to say, the PA went fishing, it hurt and did not work. I need to go to radiology--at a time to be determined.
As I was getting up, I noticed all this blood on the sheet. "Ohh, that's normal, it happens when they make a slight incision before the biopsy" Say what!??? "That is part of the procedure...it makes it less painfull" Right. Well, my backside is extra sore this evening. I praise the kung-fu of GBMC and Dr. Cohen. I am taking matters into my own hands for the sedation when I go back for the Lumbar Puncture. I have enough pain meds to drug an African rhino. I will show up so looped up that I will need a detox hit at the local methedone clinic (they are plentiful in Baltimore city) before they get near my back.
Monday was uneventful. Here are the list of tests I got: 13 vials of blood for immunolgy cross tests with my father's blood, support the local feed the mosquito program, and the normal CBC type tests. Pulminary studies where I basically did bong hits of various gasses until I got the munchies. Cat Scan of the sinus (45 second test...amazing), Heart Scan which, in a ironic twist, requires me to be injected with radioactive isotopes. Chest X-Ray and a meeting with a social worker.
I got to meet another patient that just got the mini, haplo identical transplant done about a month ago. A young black man, 26. He has AML. He is in for a fever which is not uncommon. Overall, doing well and said the actual transplant procedure (pre and post chemo) was a "piece of cake". He is in the military so hopefully his tolerance level is not off the scale.
The fellow I met 3 or 4 months ago...the first live person produced by anyone...was in as well for an unrelated cancer problem. I hope to see him on Thursday. We have been chatting off and on since we met. He had a full transplant, allogenic (using his own marrow), which did not work. Then he got the mini, haplo using his sister's marrow which appears to be doing the trick.
I meet with Dr. Jones on Thursday. I hope to get an update on the current protocol study...mainly how many are still alive and well? Additionally, how many more have gotten the procedure done since we last spoke?
Regarding Hopkins, both Marcy and I have been very impressed with the people and the facilities. Just keep the Dr.s out of the way behind the magic curtain and things should be pleasant.
On a "Our daughter is the cutest pumpkin on earth" kick, check this out (and scroll down.)
What a thrill to see the same precision-trained hematologist greet me when I go back to White Marsh for a second donation of platelets last week. Apparently, the Red Cross tries to keep the donors and the extractors in an ongoing relationship. Perhaps this boosts donor comfort or frequency. I figure out how to relax the double-arm locked-joint elbow-freeze position, but no improvement whatsoever in choice of movies. (“Turn it off,” I ask her, “It’s too stupid to watch.” “What kind of movies do you LIKE?” she asks. Give me time… I’m trying to think of an answer…) What to do for an hour? Think about things? You can’t go to sleep because you need to squeeze the little rubber ducky every 4 seconds or so. It’s hard to talk and visit with other donors, even the one I’m married to, because of the humming of equipment, the beeping of computers, and the occasional chortle of apparently silly-minded people who actually find the movie being shown to be entertaining. Reading a book doesn’t work, because your arms are so far apart. Conceivably, one could read the paper, which is big enough to reach from hand to hand, but then again, turning the page is a problem. Ah well, let me use the time to think about things, observe the activities all around me, and ask questions about the equipment. The little kit they use, one to a customer, then thrown away, contains a series of bags and pouches and tubing and needles, and costs about $200 each, she tells me. The machines that spin out the platelets are leased. Should I turn in a sales lead on these? This donation runs longer than the other. It’s a breaking-in thing. Each time, your endurance is strengthened a little and they are able to get a richer harvest. All in all, Gary still has the hard part, and my butt doesn’t feel a thing.
Gary- your daughter has your smile. Your growing domain expertise will come in handy for our next medical app, you can really sling that terminology around.