Archives: February 2003
Mon Feb 24, 2003
4 day update
Hello. Long time, no type
The rest of the week and weekend were fairly tame. I seem to have a good day then bad day. If they remain this predictable then I can plan around them. I started getting bad sores in my mouth on Saturday. This was expected but a few weeks ago. I guess the Chemo is starting to catch up with me. Bastard Chemicals...bring it. Actually, chemicals are my friend. I must learn to be one with my chemo chemical friends (CCF for short).
Marcy and I ditched the kids on Saturday and saw Old School. This was one of the funniest movies I have seen. I gave myself a headache laughing. I wore my mask in the theater as precaution. I think my counts are heading back up, but I am paranoid. We had a lunch before hand at Palo's (sp?) in Towson then chewed up time at Borders. Got a good book on Leukemia. Here is link at Amazon if you are interested.
As with any information I have been reading, they quote prognosis given my type of leukemia--always pointing out that the Phila Chromosome is muy bad. I won't give the number since 1. I call bullshit on all %s I see and 2. I consider myself an exception to everything....I got this disease.
Sunday I was pretty tired and my mouth was en fuego. I stole Libby's baby oral gel and that is working wonders.
Today, Monday, was my GBMC apointment. The procedure has been affectionally dubbed the ass tap; even though it is more on my lower back at the top of the pelvis. As I mentioned before, this is an uncomfortable procedure. I am redefining my description....it was BRUTAL today. Explicatives could be heard down the hallway (apologies to those offended
Tonight I am working on my new computer and my Son's hand-me-down. Strangely, this is the first night that I felt like messing with the equipment. I guess I am far enough away from the intravenous chemo that my head is getting clear. I do get the spinal on Tuesday; Joy-Joy. That will be a good control to see if that is screwing with my thinking. One would think so since it is shot into my spine
I think I will be switching the site around shortly. Going to a BLOG format (Web Log). It will allow a more interactive approach to the journal meaning:
1. Email notification of new content
2. Discuss my postings, if you like, with other readers.
3. Easier posting for me since it is all web based
4. Cool PERL and mySQL technology so I can say I know this stuff
5. Posting of pics within the journal entries (could do it know but too lazy. Aren't you dieing to see my hair?)
6. Cool archiving so only the last 7 entries are shown.
So, that's what is happening. Stay tuned for updates.
FYI, some folks have been asking for an email address for me. Use: firstname.lastname@example.org It is my least spammed account for the moment until this page gets crawled.
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Wed Feb 19, 2003
The Dig out
February 15, 2003 - Saturday through February 19 - Wednesday
Sorry for the delay in updating things. Now that I am home, I have been enjoying the family. Not much going on. I am getting the AM drill w/ Patrick. He is up at 7 am. I tend to have most of my energy in the morning. The snow was awesome at our house. The neighbors were great in digging us out. I had to go to GBMC Tuesday morning at 7 for chemo and the lumbar puncture. We made it. The doctors were late
My hair started falling out today (Wednesday). I was in the shower and my head felt like "hat head" I scrubbed a little and poof. Clumps galore. Pretty wild. I thought my hair would hold out. Oh well.
I go in on Monday for a Bone Marrow biopsy. That one sucks. I get 1 more spinal on Tuesday and then I have a break for 2 to 3 weeks. During that time I think I hit Hopkins to give blood and get typed.
There was a poignant article in this weeks Baltimore Sunday paper: Arts and Society. It was about a man who went through a Bone Marrow transplant at Hopkins. He had a tumor on his lung that was treated successfully. However, he had a relapse of cancer-ALL- which is what I have and necessitated the BMT. Here is the link to the Sun article. You need to register (free).
We have a date for Libby's baptism...March 9. It will be a small affair and will roll in Patricks 2nd BDay as well. Patrick is muy cool and I am enjoying getting to know the kids again.
I am not sure if I will update the journal daily or every few. We shall see...
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Fri Feb 14, 2003
Valentine's Day and the calm before the storm
Happy Valentine's Day.
My buddy Dave hooked me up with some presents for my wife so I was covered
Did a Pizza Hut hit and then to the Price Club. Stocking up for the crazy weather coming this weekend. Off to marinate the Steaks for tonight.
Generally I am feeling pretty tired today. Hands are real shaky. I guess the 2 to 4 day after chemo is when I feel things a bit. I go back on Tuesday for another Spinal hit plus some regular chemo. Joy-Joy.
We got the Mother Load of information from Hopkins on the Bone Marrow Transplant (BMT) process. I will be putting together some Information for friends who are interested in being BM donors. Odds are you will not match me but good odds you will match someone and save their life. Highly recommend it.
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Thu Feb 13, 2003
Out and about
What a nice busy day. The nurse from neighbor care did a fly by and checked me out. Ordered some more supplies (good tape for my chest) and more flushes. All that was sitting on the steps when we got home. Impressive.
So, I went for a drive. I took the dog to the groomers. She smelled bad
Got the kids, and passed out around 11:00. I am sleeping great. Hot showers rock.
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Wed Feb 12, 2003
I AM HOME
Got home around 6 and promptly had my posse over for the Maryland game. Pizza and Subs. I need to get the 4 pounds back on that I lost in the hopsital
The supplies from Neighbor care for my Hickman Catheter showed up at 10:30 PM...just like the said. I know have a small arsenal of Saline, Heparin and gauze.
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Tue Feb 11, 2003
The good and the bad
Well. It was a good and bad day. Chemo started back up. Got some slight nausea in the evening but a pill took care of that. My lab results are rocking. My Nuetro counts doubled (.6) and I am technically, not in a compromised state. Normal value is a little over 4.0. Dr. Cohen was very pleased and my platelet counts are in the normal range. Red Blood still lagging but as Dr. Cohen said, I can always give you blood. So, he reaffirmed me going home on Thursday. I argued for Wed but he said because of the lumbar puncture I will be getting, he will hold me. I will lobby some more after the procedure
I asked Dr. Cohen what things we take away from the Induction phase of chemo and how I have faired. He said the platelet count is indicative of Remission. Hold on so I can clarify Remission. The definition--we can not detect cancerous cells through cellular assays, counts or tests. Odds are, they are there. Optimistically, they could be gone (less then 50% shot). Be reminded...Remission is the expected result with my course of treatment. Many things could have gone wrong (infection, resistance to Chemo agents, allergic reactions) and did not. Plus, symptom-wise, I did pretty damn well. Hopefully, indicative of how I will fair in the maintenance, consolidation and transplant phases.
I consider this spring training. I did not pull any muscles. I was seeing the ball well and making good contact. I am in good shape for the beginning of the season. A season is just that. Lots of games and opportunities for things to go right and wrong. I will be prepared as much as humanly possible and work the hope and faith free agencies as needed
Macy and Patrick came by. Patrick was a big surprise. He did not want to stay with his friend Kevin so there he was. It is amazing how different he looks to me. I really have not spent time with him for a month now. His vocabulary is quickly switching to two words which is awesome. "Fire" "Truck"..."Cottage" "Cheese" and my favorite.... "DaDa" "Phone"
Given my step fiasco yesterday I did the whole 4 flights up and down. I had to stop through out because my RBCs are slacking still but the legs felt a little more stable. I will try to sneak some in before the lumbar puncture. Ohh, I officially demanded a sedative called Versed. All the burses say it will knock me out for a few minutes and I will remember nothing and feel fine. Sign-Me-Up. Hopefully, Dr. Wang is on more...of course with "more numbing medicine!".
Well, its midnight and I think I might be tired.
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Mon Feb 10, 2003
To eat or to eat, there is no question
Marcy is was in all day. Dr. Cohen did a fly by. He has a cold. I wouldn't let him in
My white blood count doubled which is good. Got a ways to go. Platelets are almost normal range--straight rzaor shave here I come
Went for a long walk w/ Marcy. Went down a flight a steps and almost wiped. My legs are so weak or I forgot how to walk steps. Up was tough but I will make a point to hit them over the next few days. My fear is I get home but and wiped out. I want to be able to play with the kids and resume beating the dog
Dr. Cohen reviewed the high level project plan for the next few months. I will update the plan on Tuesday.
The restaurants of the area beware...I will be going back on the steroids Tuesday! However, I have lost 5 pounds since starting chemo. How that is possible is beyond me. I have eaten like a champ since I have been here. Speaking of eating....here comes my Bateman's wings
See you Tue.
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Sun Feb 09, 2003
The Indigent Parade
Activity today. 2 units of blood. All my counts are up except my Hematocrit. I was feeling pretty winded in the AM. The night nurse retyped me which was cool because I was able to get blood pretty early. Getting blood is a SLOW process. 3+ hours per unit. So I was hooked up all day. Around 4 I snapped and needed to go for a walk. The IV pump is battery powered so I can just wheel it around. What was strange was a bunch of other people on my side of the floor decided to go for a walk as well. It was surreal....the indigent parade. IV poles, blood bags, old butts hanging out
Watched a Clint Eastwood movie during the night--Blood Work. It continues my run of movies dealing with Blood. Blade I watched on TNT last week
My nurse hooked me with some microwave popcorn and hung out and watched some of the movie. Quiet night on the floor or she didn't like her other patients
Maybe I am home on Wednesday !!!
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Sat Feb 08, 2003
Pretty much quiet. I feel like I am getting something in my chest but all sounds clear. They are going to get me a chest xray Sunday morning to check things out. Marcy is was in all day...brought some quality Chinese food
I did a bunch of laps today. I am not that achy anymore. My head hurts when I cough which is from the spinal chemo.
All and all, same old.
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Fri Feb 07, 2003
TV sucks if you did not know
It was a dark and stormy night... just kidding but I always remember that from Snoopy trying to start the great novel. Not much material for the journal entries these days. I am feeling pretty well. Throat and mouth are getting tender but more than acceptable. I found out today that I need to get 9 more lumbar chemo treatments. That blows
Blade I, the Patriot and NBA All star stuff was on last night so I was fairly occupied. Marcy stayed home for the day to play with the kids.
Chinese food on tap for lunch on Saturday. My new friend is the Food network (ahhhh). I am sick of everything on TV (ESPN excluded of course but you can only watch sports center so many times for the same highlights).
Johns Hopkins called in the afternoon. They want to get my sister in next week to start the typing. Depending on my counts, I will head in as well and get my blood drawn. They said it is a 10 day process to determine how well of a match my sister is. 25% chance for a perfect match. If she does not work out then anonymous donor. The donor in this process gets the raw deal because of the procedure to harvest.
See you Sat.
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Thu Feb 06, 2003
Old Man Gary
Sorry for the delay. I was too lazy to write things up last night...you know with all the things that I have to do
Waiting for the snow...
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Wed Feb 05, 2003
To puke or not to puke...
Bad night. Starting puking in the morning but they gave me some medicine. Woke back up around 10. Dr. Cohen stopped in and was pleased that my platelets have gone up on their own so I will not need any for now. He is also starting me on the Nuetopene (sp?) injections to fire up my white blood production. Generally, he was pretty up beat.
I got my spinal at 2. That sucked. Back is quite sore. So I am lying low.
Marcy got some quality grub from Bill Bateman's. Grilled Chicken and rice. I have been struggle with the food of late for some reason. Fingers crossed for this evening.
So, that's about it. Sounds like Cindy sent out the blood drive stuff which is great. You do not realize the need until you need it
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Tue Feb 04, 2003
Chemo Brain Sets In
Hurry up and wait
I am getting platelets in the morning and then at 2:00 I get the spinal chemo. Fun Fun.
Lots of visitors today but I am not much conversation. I got "chemo brain". I can't focus on much and am writing things down in my book with the wrong times and such. Oh well. Hopefully, spell check will keep the journal under control
See you on Wed.
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Mon Feb 03, 2003
Nothing happened today. Dr. Cohen came in late. He spoke to Hopkins transplant head. He is on track with my current course of treatment. Given what he knows of the situation, my preference of donors is: my sister, anonymous, myself, cord blood. They have only done 6 transplants with the recipients own marrow given the ALL that I have. The drugs are too new that they are experimenting w/ that would clean my stems (rid them of any bad leukemic cells). So, in a week or so, we will start the recon on my sister and hopefully she pulls one out for me
I got two units of blood last night but was still pretty tired this afternoon. It looks like I will not get the intrathecal until Wed. I will get a hit of platelets on Tuesday in prep for the procedure.
Overall, still feeling decent-zero focus. Appetite is still good. All things considered . . . Talk to you on Tuesday.
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Sun Feb 02, 2003
Message of the day. TIRED. My numbers are dropping nicely hence me getting pretty tired. I am getting two units of blood to perk up the Hematocrit. My platelet counts are good-enough so that Dr. Cohen may start the intrathecal (spinal/brain chemo) on Monday. Nothing like a 6 inch needle in the spine to wake you up
So hanging quiet again this evening. Watched the NHL all star and now the pro bowl games. I have quite a short attention span due to the drugs. Not much into the Xbox, reading or the TV. Meals, however, I do look forward to. Must be the steroids
All kinds of visitors today but I was napping off and on.
Talk at you on Monday.
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Sat Feb 01, 2003
Wait, wait, wait
Boredom is setting in. Things continue to be quiet. Strangely, it seems unnerving. My daily labs are showing things creeping down but for some reason, I equate feeling crappy with an all out, successful onslaught taking place on the leukemia cells. My oncologist assures me things are cooking and thanks to the miracle of steroids, I am feeling decent
So, the wait continues. Marcy came by today and we did bills. Fun
Watch the Duke ladies choke to UCONN this evening.
I kept the Shuttle tragedy off the news. The media is looking in to more than it is (could it be terrorism...ridiculous).
Having strange food cravings. When I get them, I take one bite and not like it. Strange.
Not much else to report. See you Sunday.
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