Archives: June 2003
Fri Jun 27, 2003
Got juiced up with some platelets today and the ass-tap which was pain free since I got 2 mgs of Pain Killer-nysh.
Still compromised. Need to go in daily for blood. Watching for a couple of things. When my polys hit a certain level, I start on the Gleevec which works on the Ph+ chromosome. Maybe it will take out a few more cells. Also, when my whites hit hit a certain level, I can stop with the Neupogen shots.
Still watching for fever, etc. so I will be holed up a few days.
Good to be home.
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Wed Jun 25, 2003
Still in but no fever, feelin great
My counts are still dropping. Doctor wants to wait untill they are on the move up. Biospy still on for Friday. Good thing about being in the hospital for the Ass Tap, I can get a shot of pain medicine before hand....yeah!
Took a long walk outside. Unfamilar sites...heat and sun. It felt good.
Not much else happening. Read the paper yeaterday which is a sign I am feeling better. Marcy is off to buy a sofa because the current one no one can get out of.
I've lost about 30 lbs since this all started....nice controlled weight loss. Not the diet I hoped for but I will take it. Doctors have remarked that I have lots of reserves so that helps.
Not much else...working on a new poll for your voting pleasure.
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Mon Jun 23, 2003
Home Sweet Home: Short Lived
Gary's back in the hospital. He was battling an on and off fever on Saturday night and we were in contact with the on-call doc all night in addition to waking up every two hours to take his temperature. So when we went to GBMC on Sunday for Gary's daily blood letting, we decided to just check him in. His counts have bottomed out (as expected) and he will be getting more platelets today until his can recover. They also could give him more antibiotics to help fight the fever and monitor him more closely then we can at home. It makes me nervous when Gary is sick at home -- I love having him here, but I sleep better when he's in the hospital... Gary also gets another hit of chemo today (Vincristine from the vinca plant).
The plan, as it stands now, is for Gary to get another bone marrow biopsy on Friday to determine if he is in remission. Hopkins has stipulated that Gary needs to be in remission before they will begin the transplant. We asked Dr. Cohen if he thinks he can get Gary back into remission and he says, "I'm an optimist. So yes."
It's VERY critical to have an oncologist that's an optimist. We love this guy!
If anyone wants to call Gary, he's in room 3447 and his number is (443) 849-8562. If you're planning a visit, I always recommend calling first to get a state of the union.
Hopefully Gary will be home in a few days when his counts rise and he is away from this critical time -- then biopsy, remission, transplant, then happily ever after.
Love to all--
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Thu Jun 19, 2003
Home Sweet Home
Quick posting. I am home. Blood counts are low but feel pretty decent. My wife has not killed me yet with the injections. I make sure I am very nice to her before administration!
Little bit of a waiting game now. What we are hoping for is my counts rebound early next week and the Ass Tap (Bone marrow Biopsy) is clear next Friday. If that happens then we start the Hopkins wheel again.
Not much else going on. Hurrying up to wait.
Thanks to everyone's kind words/comments to the site. I do read them and they DO help. A shot in the arm is always welcomed. This is getting old but as my wife says, "I am a tenacious bastard!". Talk at you soon.
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Tue Jun 17, 2003
Galloween Membership Hits All-Time High
As an administrator to this site (my powers are God-like but benevolent) I can always keep an eye on who has registered on daily basis. And let me just tell you that membership has gone from 52 last week to 116 (!) this week. Thank you Patty Weaver at RDA for the all-point bulletin to RDAer's near and far. Thanks as well to all you lurkers out there who finally registered. I really got a kick out of the fact that my former Pastor finally came clean and registered! Let that be an inspiration to those of you out there who are faithful readers, but never bothered to register. Please take the time to do so -- it is a great thrill to Gary and me to see who is out there! We are blown away at the numbers of you out there sending your good wishes and prayers our way. As I say when someone tells me they're praying for Gary: "It's working so far!" Keep up the good work. And remember: Membership has its privileges! (they are undisclosed at this point, but I'm sure they'll be great...)
Oh, right. How is Gary doing?
Gary will be able to come home tomorrow to recover from the chemo. We will need to go into the hospital everday for a while to get his blood drawn -- to check to see if he needs platelets, blood, and to keep a general eye on things. His platelet count is bottoming out so they are giving him a platelet infusion tomorrow morning before we split. I will also need to give him a shot of Neupogen everyday to help stimulate growth of white blood cells. Should I set up a poll as to where I should give him the shots?
We don't have the definative plan from Hopkins yet, but we're assuming they will wait for Gary to recover (i.e. his blood counts come back near normal) and then we will start the transplant process again. This will involve a physical work-up, pre-transplant chemo for 5 days, one hit of total body irradiation and then the transplant on day 7. Gary's father will come in sometime before then to donate the bone marrow. Piece of cake.
Thanks again to all of you out there -- your support is a priceless gift.
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Sat Jun 14, 2003
Back in the Saddle
Gary's feeling better today -- after they got the steriods on board on Thursday, his bone pain vanished in a few hours. The oncologist related his bone pain to a traffic jam. Once the steriods succesfully reduced the cell numbers in Gary bone marrow, traffic was able to flow once again and the pain disappeared. However, the steroids leave Gary with an indigestion-like feeling and also give him the hiccups. Of course. Double-edged sword.
We're here until Wednesday-ish and we then we may be directly off to Hopkins or we might go home for a while to recover before transplant. We aren't privvy to the plan yet, but we'll pass along the facts as we get them.
Thanks for all the comments from the RDA crew! Gary got to read them today (from the computer at the nurses station). Keep 'em coming -- it helps keep us connected to the outside world!
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Thu Jun 12, 2003
Thursday Night Update
Gary hasn't had such a good day today. The bone marrow biopsy came back (as expected) to confirm that the leukemia has reared its ugly head again. Gary's been battling nausea all day today and the nurses are trying to get his stomach settled so they can begin the chemo regimine. We need a break -- so if any one there has an extra one, please send it along.
I've pawned the kids off to my mother for the night and she's taking off tomorrow to keep them for us.
Nothing much else to report -- I think we've had enough for today. We're anxious to get the chemo started so the insuing cell death will alleviate Gary's bone pain and also to knock the leukemia back into remission. Think happy, non-nauseous thoughts so we can get the ball rolling.
I'll type more when I can (I successfully tapped into an internet connection from a nurses' station. Some of Gary's mojo has rubbed off over the years.)
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Wed Jun 11, 2003
The Party is Cancelled.
Sorry to be the bearer of bad news but we have to cancel the pre-BMT blow-out on Saturday because it appears that Gary's leukemia has relapsed. We went to the emergency room last week when Gary was having intense back pain (see the "Shingles" entry) and throughout this week, Gary has continued to battle with pain and fever. We were back in the emergency room yesterday morning due to the continued back pain. They took a chest x-ray and an MRI (2 hours on the table!) which both came back normal. After Gary's blood counts took a dive last night and this morning, Dr. Cohen drew a bone marrow biospy this afternoon (read: ass-tap). Cohen spoke with Dr. Jones (transplant doc at Hopkins) and it sounds to both of them that the leukemia has relapsed (not the Shingles after all - hah!). We will get the results of the marrow biopsy tomorrow morning.
Looking forward, Gary will have an intense round of chemo at GBMC to get him back into remission, and then roll right into the transplant at Hopkins. It can sometimes be difficult to get patients back into remission once they have relapsed, but Gary and I choose to ignore this piece of data and we are both assuming that all will go well and smoothly and he will be back in remission in a few weeks. Then back to the task at hand-- transplant.
We were overwhelmed at the number of folks that were going to be able to come to the party and wish Gary well on his road to transplant, and it's a bummer (to say the least) that we won't be able to see everyone on Saturday. It would have rained anyway.
Gary is in good spirits and is looking forward to chemo for no other reason then it will relieve his bone pain. His attitude reminds me of the scene in Monty Python's "The Life of David" when they are hanging from crosses singing and whistling "Always Look on the Bright Side of Life."
Pass the word about the cancellation to anyone you know that was going to attend the party in case they are not reading the journal at the moment.
Stay tuned for more adventures!
Marcy and Gary
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Thu Jun 05, 2003
A Party, for Me???
Yes folks. All Gary and Marcy need is a reason to throw a party.
When: June 14th, 2003, 1:00 PM
Where: Marcy's Parent's House
Why: Gary's Pre Transplant blow out
RSVP To: 410-780-9286 (mandatory)
If things pan out, we should have pitbeef, beer and a band. Yes you read correctly, Beer.
Here is the address:
10909 Old Landing Road
Kingsville, MD 21087
Here is a Mapquest link
You must RSVP. Repeat, you must RSVP. Everyone asks what they can do for me to help, RSVP so we can order the right amount of food and drink. Did I mention to RSVP to 410-780-9286? Leave a message.
Hope to see all there.
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#$%@! What Next
After a 3:30 AM visit to the emergency room yesterday and a follow up with my oncologist, it appears I am getting Shingles on my left side of my back. Joy Joy. I am doped up on some meds, anti virals and some antibiotics for a fever that I have. We do have a new worse pain leader: 1st place, Shingles pain. 2nd place, Hip Pain from Leukemia.
Key to quick emergency room attention....puke and have difficulty breathing! We were in pretty fast. Surprisingly, the ER did not diagnose me. The cat scan and chest xray were negative. They were thinking a clot or something. After the night time ER doctor left, she was replaced by Dr. incompetance. We demanded to be discharged and went to Dr. Cohens office. He is 70% sure it is Shingles. I should start with the welts in 2 days or so. If they do not appear then back to the drawing board.
Shingles is the Chicken Pox virus that lies dormant in the nerve roots in the body. In immunocompomised people, it can begin expressing itself, traveling along the nerve (damaging it along the way--the pain) and surfacing as blisters and such. I had them a year and a half ago. They pretty much suck. According to Dr. Cohen, this should not affect the transplant because the active outbreak should be done in a week. I will just have the residual nerve damage pain and the blisters.
Whats next, locust...ohhh that is next year. Out.
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Mon Jun 02, 2003
The votes are in!
Johns Hopkins, Game-On.
After certified by Acenture (I got a real good rate), the voting results are in. Johns Hopkins was a runaway winner with the Guinness Marrow Transplant in 2nd place.
I placed the call this morning to Hopkins. In typical fashion, when I told my "Case Manager" (CM) that it was Go-Time, she asked, "Where are you going???". uhhhg. I have to believe the Drs. there can understand me; just a little.
Encouraging question from my CM. Would you prefer local or conscious sedation for your marrow biopsies. Duhhhh I don't need no stinking pain killers!
Thanks for all that voted.
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