Archives: July 2003
Thu Jul 31, 2003
Counts down and out
Gary and I went to GBMC Infusion Center today for his hit of Day 11 Vincristine. They drew blood while we were there and his white cell count is down to 100 (virtually none) and his platelets have dropped. All as expected. His hematocrit is at 25 which is right on the line for a blood transfusion. Hedging our bets, the nurse made him an appointment for Friday morning to get two units of blood. Since in all likelihood his red blood counts will continue to drop, we thought it would be wise to get the transfusion before the weekend, when he would have to be admitted in order to get the blood (The infusion center is closed on the weekends).
Shout out to Jean Bosley (a friend of mine from PHH days) who became our third reported platelet donor. In her words "it wasn't bad at all". I'm going to attempt for the third time to donate platelets either tomorrow or Saturday. Inevitably I make an appoointment and then promptly catch a cold. Three's a charm.
Gary and Libby are upstairs snoozing (in their respective beds) and Patrick and I are enjoying dinner while watching Rolie Polie Olie.
Love to all--
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Wed Jul 30, 2003
Bourbon Tour of Kentucky
Gary is fighting the after effects of chemo -- mouth sores. Actually in his case it's tongue sores. He's being a real trooper, but I know his mouth hurts. He couldn't sleep last night, so he was up between 2 and 4 working on the computer and sending out emails.
We have activities planned for today, however. Our friend Jim is on his way up from Northern Virginia to hang out with us for the day. We're going to take him up to see the property we purchased last July in Parkton. And then we'll get lunch at the Wagon Wheel in Hereford (Or as the locals call it "the Wheel". We don't know they call it this for sure, but that's what we'll call it when we're locals.)
Gary is attempting to put together an RV excursion if we have a few days of free time before his transplant. Dubbed "the Bourbon Tour of Kentucky" we will be piling in a rented RV with some friends who have nothing better to do, and driving to Louisville, Kentucky to visit the Jim Bean Distillery. This is as good a destination as any, since the journey is more important than the destination. I'm hoping we can stop by the Louisville Slugger museum (and factory tour?) while we're there. Any one want to join us? Any one actually driven and RV before? Any one drink bourbon?
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Sat Jul 26, 2003
Back at Rockaway
Well, Gary came home this afternoon after 6 days of chemo at GBMC. He did fairly well, only a few bouts of nausea and general yuckiness. We just got back from a romantic dinner at Chili's (high cuisine)... Patrick is at Gary's Mom's for the night and Libby is at my Mom's for the night. So it's just us and the pet menagerie.
Gary has to go back to the GBMC infusion center on Monday to have blood work drawn and then back again on Thursday for a hit of chemo and blood work. His counts should start dropping in the next few days and bottom out by mid-week. He will have a bone marrow biospsy next Monday and that should tell us whether he is in remission. I already know that he is, so the test is just confimatory : )
If all is well, the Hopkins drill begins on August 18th for a few days of work ups -- Bone marrow biopsy, lumbar puntcure (spinal tap), chest x-ray, EKG. Then the pre-transplant chemo should begin on the 25th-ish with the actual transplant over Labor Day weekend. We don't know exactly which day yet. Gary and I will attend a "transplant class" at Hopkins during his work-up week so we will better understand the whole process. We are told that all the procedures (including the transplant) will be out patient. Hummmm. We're skeptical. But when are we not?
We will keep everyone posted with details as we get them.
Love to all--
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Tue Jul 22, 2003
We got back to lovely Baltimore on Saunday night after a fantastic trip to the Bahamas. The Atlantis resort was everything people told us it would be -- lots to do, beautiful grounds, VERY relaxing and mindless. Just what we needed. Here's the cab story: We arrive at the Bahamas airport unscathed after our non-stop flight from Philly. We are directed to a waiting cab (read: beat up Dodge Caravan) driven by a seemingly nice young man. Gary asks the guy how long the trip is to Atlantis and the guy says "30 minutes, but I can get you there in 20." This should have been our first clue. We immediately begin tailgating the truck in front of us at a high rate of speed. Now Gary and I have been to many islands and have expericed this type of reckless island driving, so we aren't initially phased. We exchange knowing glances and try to relax in the back seat. However we grew more and more tense as this guy's driving grew more and more unpredictable and dangerous. At the point where we actually ran off the road I thought of just making a break for it and jumping out of the vehicle. All the while this is going on, the cabbie is coming on to women at traffic lights and beeping to freinds along the way. Sometimes we would slow down in the middle of the road, drift slowly to the right (into oncoming traffic) and then suddenly veer back into our lane and pick up speed again. When we arrived at Altantis (I have a death-grip on Gary's leg by now) the bell captain made the mistake of asking us how our trip was. After kissing the ground, we told the bell hop about our near-death experience and he called a cop over to talk to the cab driver. Gary and I were diagnosing an overindulgence of drugs and alcohol. At least. When we saw the bell hop later we asked what they did to the guy and he said he was "written up". ???? Gotta love the islands! (his name was Adolphus Ellis. Beware)
ANYWAY-- Gary is in GBMC and started chemo last night. He'll be in until Satuday and then we come home and wait for his counts to come back up.
Thanks to Susan Stiles and Joe Donovan for being our first REPORTED platelet donors! To read her fantastic missive, check the comments from a couple of days ago.
Love to all--
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Sat Jul 19, 2003
Update from Atlantis
This place is beautiful! Lots to do and see and even though they say they are fully booked -- it's not too crowded. We have, however had to spend Libby's college fund on food and gambling expenses. But I think Libby will be able to successfully wait tables for her college education!
We leave tomorrow morning to catch a 1:35 flight back to Philly. I will fill everyone in on the cab ride from the airport to Atlantis when we get back. This was more of a mortal threat to Gary's life than the leukemia. I stupidly paid the maniac then had him promptly arrested. But I digress...
Gary is checking into chez GBMC on Monday morning to finish off this pre-transplant chemo thing. We'll make postings as we go.
Type at ya later!
M and G
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Tue Jul 15, 2003
We're Outta Here
Let me tell you -- there's nothing like a good case of leukemia to give us an excuse to travel and to travel often! Since Gary will not be going back for the second round of chemo until Monday (when his platelet count will be higher) we are leaving Thursday morning to go to Atlantis in the Bahamas. We hear it is a fabulous resort and are hoping to have fun in the sun and maybe hit the jackpot playing nickel slots! We are leaving our beloved children in the care of the large Grandparent Posse back here at home. Base camp will be my mother's, with the other Grandparents checking the kids in and out as needed. A tag-team effort. Gary and I will be blissful immune to this chaos, as we will be lying in beach chairs sipping exotic fru-fru drinks (OK, probably iced teas.)
Gary and Libby are napping at the moment. Gary has been battling morning headaches and nausea from the Gleevec he is taking. We're going to try to move the pill taking schedule around to later in the morning to see if we can avoid the upset stomach issues.
Gary is going to the RDA State-of-the-Union meeting with a collegue today -- I'm glad he will be getting out to see his work friends. The kids and I are planning an intellectual afternoon of napping and sandbox digging (hopefully not simulatneously)
Libby is crawling now -- or at least her version of the GI Joe jungle crawl. Her purpose in life now is to get into whatever Patrick is playing with at the monent. The annoying little sister is in full swing.
Anyone out there been to Atlantis? Check in...
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Sun Jul 13, 2003
Platelets Failing me now!
My platelet count was not high (80,000) enough this Sunday for me to get admitted on Monday. They were 67,000 on Thursday...my previous post was incorrect.
Not sure what the drill will be. I will be calling the Dr. in the AM. So for now, I will be at home. Man, lets get this show on the road!
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Fri Jul 11, 2003
SNL: Weekend Update . . .
Nothing too crazy to report. I, more than likely, will be checking back in to the GBMC Marriot on Monday. I need to get my CBC/Platelets checked on Sunday. Dr. Cohen does not want me in until my platelets are at/above 100,000. They are at 80,000 now. My RBCs have dropped to 24 so I will more than likely need a hit of blood on Monday regardless. Whites/Polys are down as well...all compliments of the high does Gleevec I am taking. Dr. Cohen seems pretty cool with the state of the union. Had a good checkup on Thursday. I am feeling pretty decent-winded but no real complaints. I think my alergies are acting up...sinus like headaches the last few mornings.
I will get the same chemo drill that I did last time. Joy Joy. Not much hair left. We shall see if the eye brows/lashes hold on. Now where did I put that eye liner???
So, I plan on taking in the laptop to the hospital to catch up on some Netflix (DVD movies) and attempt to study for a work cert (IT Flight Plan)...need to see if the brain is working.
Talk at you soon,
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Fri Jul 04, 2003
Hanging tight, feeling decent
Just got back from fireworks--pretty good.
I had a real bad chest cold last week until wednesday. Touch and go with the fever but did not need to check in to the GBMC hilton. My counts started going up finally on Tuesday and I got to stop the daily blood draws on Wednesday.
I started taking Gleevec which targets an enzyme that is produced because of the Philadelphia Chrmosome I have. Gleevec is used mainly in CML but I guess it does not hurt in ALL Ph+.
The bone marrow biopsy came back on Tuesday. It shows an 80% reduction in the leukemia cells but I am technically not in remission. The Dr. that is covering for Dr. Cohen (he is on vacation) thinks the Gleevec may help reduce the leukemia blast counts and a follow up biopsy will be done in a week or two. I am suspect on this given what I have read regarding Gleevec. I think, more than likely, I will need another round of chemo (joy-joy) before Hopkins will touch me. We are going to discuss this with Dr. Cohen and Dr. Jones early next week. My preference is to get the show on the road!
So, next week should shake out a bunch of stuff. Maybe, if time/health permits, some quick vacationing. Places to hit/things to do: waterpark with the kids, NY without the kids, renting a RV and driving somewhere with kids.
We are selling parking spaces on Saturday to benefit the Leukemia and Lymphoma Society. As many of you know, we usually have a massive 4th party with fireworks on the bay. Not this year but we happen to have the only double lot on the point so parking can be sold at a premium! My cousin will be my muscle collecting 5$. We will be handing out brochures on platelet donation. I needed platelets twice my last stay and it was very difficult to find a single donor source. I would have had to received mixed donors which generally is not good for pre transplant patients.
Marcy and I stopped by the Whitemarsh Red Cross and saw the really cool machines that collect the platelets. Amazing stuff! Again, for all those that want to help DONATE PLATELETS!
I updated the journal software so the emailing should be working better. I think some addresses were not getting email updates.
Sorry for the delay in the posting. Have a happy fourth!
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