Archives: August 2003
Wed Aug 20, 2003
Finally, February Journal Entries are in the Archives
I got all of the february entries moved over so the journal is now completely up to date. Give the February Archives a read to fill in the blanks. It covers most of my first round of chemo and coming home.
Thanks for the patience!
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Tue Aug 19, 2003
New hospital, same butt
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.)
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Fri Aug 08, 2003
And in a Related Story...
In what can only be termed as another "odd and freaky" turn of events, the beloved (and dare I say historic) National Bohemian brewery building in Highlandtown (pronounced "Hollin-town" to us locals) suffered a two alarm fire on Thursday. NattyBohFire Yet another SIGN? We have no idea what the connection is between Gary's leukemia and the mericless rash of distillery/brewery fires, but we do know that the rule of three must soon prove true. Beware if driving near Sam Adams' in Boston or if, God forbid, you happen to be traveling anywhere close to Milwaukee in the near future -- the whole place could go...
Gary and I are off the The Ocean tomorrow morning. We're feeling GREAT, especially since the kids will be left at my mother's. (We really DO love our kids, but man, they are exhausting.)
Anyone need some Fisher's popcorn?
Love to all---
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Thu Aug 07, 2003
Hot Damn and Halleluia
Gary is back in REMISSION! Woo-Hoo! Dr. Cohen called us tonight to give us the good news. They can only detect 1% blasts in his marrow. As we say: "good enough". So the Hopkins schedule is definately on and we will begin the transplant work ups on Monday, August 18th.
Gary and I spent the day with Patrick at Dutch Wonderland in Lancaster, PA and we all had a blast. My favorite ride was the huge slide that you go down riding on a burlap bag. Patrick sat on my lap and squealed the whole way down. Gary was generous enough to let me climb the 6 storeys of stairs to get to the top. He took pictures as we came down. Libby spent the day with friends of ours (at "the farm" for those in the know) and occupied her time eating, puttering around and getting lodged under short tables. She had a fun day, too.
REMISSION. What a beautiful word. See? -- all the prayers are working! Thanks.
Love to all--
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Wed Aug 06, 2003
The South Burns Again
In what can only be termed as an "odd and freaky" turn of events, the Jim Beam distillery has burned to the ground in Louisville Kentucky. JimBeamFire More accurately one of their warehouses containing 800,000 gallons of bourbon burned on Tuesday. As this can only be interpreted as A SIGN, we will not be renting an RV and driving to the Jim Beam distillery. Rather we are now planning a low-key couple of days at the beach. Ocean City. Not as much bourbon there.
Gary is feeling GREAT. His counts are back up and we are awaiting the results of the bone marrow biopsy he had on Monday. That will tell us whether he is back in remission.
Looking forward, we do have a schedule for the transplant. Gary goes to Hopkins beginning August 18th for a few days of testing (EKG, chest x-rays, etc.) on an out-patient basis. We then get a week off and then his pre-transplant-chemo begins on August 25th. About 5 days of chemo culminating with one hit of Total Body Irradiation. This is all out-patient as well. His transplant is scheduled for Friday, September 5th. Mark your calendars. It's the start of something big. September 5th is also the birthday of Gary's Great-Grandfather Orb, who passed away a few years ago. A wonderful and influential man in Gary's life. Perhaps a better SIGN than burning bourbon.
Love to all--
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