Archives: January 2003
Fri Jan 31, 2003
Still feeling decent
Another quiet day. Hiccups and indigestion are the worse complaints. I will take that any day of the week
Patrick and Marcy came today. Uncle Dookie did a fly by as well. And the Dad and Kathy (they are over the flu finally).
Worse snafu of the day occured with my dinner. They never got my order so I got FISH. Nast-eeee. As most of you know, I hate all forms of seafood
Watch the terps game last night which was quite ugly for the first half but things turned around.
Marcy brought in a easel for Patrick who was coloring and having a great time. Patrick also loves working the buttons on the bed. I taped up the nurse call button. That was getting old
All is well so far. Still the calm before the storm???? We shall see.
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Thu Jan 30, 2003
All quiet on the GBMC front
Fairly quiet day. Energy levels seem down even though I slept like a champ. I have developed hiccups from the steroids. Stange.
Marcy and the kids came by day. Patrick and I were racing through the hallways in the wheelchair. He liked that!
Most of my free family has the flu so visitors have been low key which I think is good. My parents have no clue what to really say and I can imagine being in their shoes. All I can do is remind them of the odds and the things I have going on for me. I still need to keep the focus on me. Easy to say
I got my third Chemo hit this evening then will have 4 days off. Physiologically that seems better. Even though it does not hurt it is still a weird feeling getting that crap injected into me. But in some strange way, the chemo are the marines we are sending in so more power to them.
Cindy at work is going to help me organize a general blood drive. Even though the blood would not go to me, it would greatly help the Red Cross. I will be the recipient of many transfusions in the future so any help to that organization would be amazing. It is saving my life. So those that are interested, stay tuned and I will post up some info.
Off to bed.
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Wed Jan 29, 2003
I did not get to sleep until 3:30 AM or so. The steroids (helps lessen the chemo side effects) get you a bit wired plus I am sure my nerves are simmering. Bit of a surreal experience getting this crap injected into you. They game me the steroids and nausea medicine first. Then the 3 chemo drugs: Vincristine, Daunorubicin, Cytoxan The three amigos. Standard issue treatment for this so I guess it leaves little to guess. The big deal is getting the amounts correct given height and weight. Given the attention to process at RDA, I am driving the nurses at GBMC nuts. Every nurse does things differently. Some minor some major. I am every vigilant while I can to make sure the right stuff is happening (given what I have learned from my two favorite head nurses).
The chemo was generally anti climatic. Did not feel it going on except for a strange odor that my brain manufactured (happens when they flush my hickman--almond smell...weird). Watched a movie, shot the shit with a friend who could stay and finally got a quality 2 hours in before they came in at 5. It was a quick visit and I was back out till 9. Marcy and the Kids are do over 9:30/10:00 so I was up and about, ate breakfast and the brood appeared.
It was great seeing the kids. Libby is so pleasant now (finally !
It was a shot in the arm to have my whole family here. The room supports it (palatial estate at GBMC) so there is no reason to have them over except if anyone is sick.
I had a chance to recap some things with Dr. Cohen in the morning. Of course, the PM is coming out of me so I needed the timeline, milestones, risks and such. I am sure I will be driving him nuts in a few more days
Next three weeks: Marrow Chemotherapy
Goal: kill the marrow including the leukocytes cells. Start my own stem cells to fire back up and produce normal cells.
Risk: Infection. When the marrow is gone, I am in a dangerous period with no self defense--the Nader.
Mitigation: Antibiotics, Antivirals, Antifungals. Temperature control
Bone Marrow Biopsy:
Desired results: Remission (no abnormal leucocytes , improving blood counts)
10 to 12 weeks: Marrow and intrathecal (spinal column)
Goal: Kill any stragglers in the marrow. Kill any leucocytes that may be in the spinal cavity or brain. Intrathecal is a preemptive strike.
Risks: Same as above. Minor surgical procedure with the lumbar punctures. Headaches.
Mitigation: Same as above.
3 to 6 months from today, Bone Marrow Transplant
Goal: Intensive 2nd wave to eradicate any rogue abnormal cells. Reintroduce healthy marrow stem cells.
Risks: 10 time more extensive than normal chemo. Aplastic Anemia
Mitigation: Stem cell donor (myself, cord blood, anonymous, sister)
So, this is the drill that is a head. If things progress smoothly, and I get the transplant, I should be cured. Odds in my favor.
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Tue Jan 28, 2003
The enemy has a name
Uneventful so far this morning. I feel fine. Still waiting for the heart test.
Got the MUGA test which makes sure my heart is moving blood well. It will serve as a baseline as I will need this test later to measure any heart damage from the chemo.
So, waiting on Dr. Cohen to stop by. He did yesterday but I had a ton of folks in the room so he did not go into much. I will get the details this evening. I should be starting chemo shortly.
Well, my Enemy has a name:
Philadelphia Positive, Acute Lymphoid Leukemia typed as pre-B-Cell
The doctor spent some time with Marcy and I this evening. The prognosis game is already becoming hard to grapple with. The Phila. Chromosome translocation is giving us some un needed problems. But, it is what it is. I am officially starting Chemo now. They gave me some pre meds to help w/ the nausea. The drill, I think is that I will get this chemo and potentially be home in 2 to 3 weeks. Then on a outpatient basis, continue to receive chemo. With ALL, I will need to receive chemo in my spine and brain. The tests were clear from my lumbar tap but this is pre emptive. So, once this is done, I will more than likely be in a short remission. The next course is where things get a little unclear. Given the Phila. Chromosome, there is a good chance things will come back. Because of this, a pre emptive bone marrow transplant will be needed more than likely. This essentially is chemo times 10. Since the marrow nuke is so thorough, I then need to have marrow but back in. This may come from me (harvested when I am in remission), from my children's cord blood that we collected (thank God), my sister (if matched) or a donor (20% donor match chance). This is all contingent that John Hopkins will accept me into a transplant program. Dr. Cohen said this is way to far out to be worrying about so I will take his advise.
So, another sad evening but the odds a clearly in my favor and I strangely have a great outlook. Hopefully, this continues and I can concentrate on kicking some ass.
I should start feeling bad on Thursday. Marcy and the kids are coming over tomorrow so that will be awesome. I have not seen Patrick in a week.
Chemo will start around 10:30
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Mon Jan 27, 2003
I am feeling pretty awesome today; not that I really felt bad since I was admitted. I am suppose to get the critical type results today which will dictate my treatment and give me some statistical sense of my chances. Cure is a lofty term when it comes to leukemia. I can lead a pretty fulfilling life and not be cured. Certainly, I am going for the cured side of things but I am one not to be too greedy
Marcy is coming over w/ Libby (my 12 week old girl) who I have not seen in a week. Patrick should hopefully come by on Tuesday. He has the flu and we wanted to make sure he was over it.
Got some preliminary results from Dr. Cohen. I have acute lymphoid leukemia (ALL). Children mostly get this type (70%). Dr. Cohen said this is good news (read better prognosis). I am NULL for T-Cell and B-Cell which is also good. They are still waiting on several cytogenetic tests. One that did come back positive is for the Philadelphia Chromosome. This is not good (worse when kids have this, a little more unclear the real impact for adults). I did some preliminary digging and the Philadelphia Chromosome is a translocation of genes between chromosomes. Translocation (cob-webs coming down from my genetics classes in college) is one of the main reasons for the genetic diversity in humans. This is a translocation that resulted in producing the leukemic cells. (I will clean up this technical explaination as I refresh my memory then spin it down to the layman).
ALL is a leukemia that can get into the cerebal functions (brain, spinal column). Because of that, I had to get a Lumbar Puncture where the pull out 10 ccs of spinal fluid to send to the lab. That test was not too bad. I saw the 6 inch needle afterwards. Yshhhhh.
One of the chemo drugs I will be getting is tough on the heart. They are ordering a MUGA (sp?) scan to test my cardiac output as a baseline. That should happen on Tuesday morning. I will be starting chemo on Tuesday after the Nuclear Medicine test on my heart. Let the games begin.
My posse was over most of this afternoon. They hooked me. Rewired the hospital TV so my XBox would work. Got me a universal remote so I can actually turn off the damn TV without surfing to channel 0 when I am at channel 6 (1 way surfing). Bad user interface design
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Sun Jan 26, 2003
The calm before the storm.
I am getting back the final test results which will type the Leukemia that I have. This directly relates to the type of chemotherapy I will get as well as the prognosis. The have a cyto-geneticist look at the chromosomes of the screwed up cells. They are looking for genetic markers that statistically map to prognosis data. I guess the good thing w/ Leukemia is that there has been a ton of money and research thrown at it so that bodes well for me in 2003.
Not much else going on today. Did bills over the Internet. I ran a wire over to the far wall which had an outside line. When my wife gave birth here at GBMC, they had CAT 5 drops in the room. I am not so lucky this time
Started prepping for 2003 tax returns. Fortunately we did a 3rd quarter run through with the accountant so it should just be an update of the real numbers.
Good turn out for the Super Bowl party. I have clearly established myself as the dominant and favorite patient of the nurses on the oncology floor. Mission accomplished. I feel I can never get too much attention
I got some quality sleep last night now that I have my own pillows from home and my Geek-Sheet blanket.
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Sat Jan 25, 2003
My first surgery
No food or water after midnight. Since it is Saturday, my surgery time was a moving target. I will be coming back to my new room. GBMC has several rooms for folks that will be here a long time. The room is positively pressurized to keep out the Germs.
They gave me a bag of platelets in prep for the surgery. My counts are all critically low now although I feel pretty damn good. Makes you wonder if there is sick Garry Gallaway running around while I am in the hospital
They sent for my at 1:15. Got upstairs in pre-op and got to watch TV for 1.5 hours. Finally got in for my first surgery ever around 3 or so. Interesting experience. They got me all hooked up started the IV. Quick injection and the next thing I am waking up while the Dr. is messing with something on my chest. I proceeded to say he is the man and tell him I am getting him a gift certificate to Bluestone since he has done the inaugural surgery on me. I guess I got on his nerves enough and I was back out. I thought he shot the Anesthetist a stare
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Fri Jan 24, 2003
A day of tests
Drew more blood for labs. Stayed on Antibiotics. Drank some more contrast stuff in anticipation of my CAT Scan at 7:00. That did not happen until 9:30 or so. Dr. Cohen did the bone marrow biopsy around 8:45. That sucked big time. Being young, the bone was tough. Being big, lots of tissue to numb and not enough time
Tone and Approach change. Now that I am caught up on the Journal, I will try to give a more personal account of things—interjecting levity to the situation as needed for readability and sanity
It was a very sad night for me. I had picture of my kids up that I ultimately took down for now. Lots of crap to think about that spans all emotions. So writing about my experiences seemed like a decent enough idea to occupy some time and keep me more on the sane side of things. Talked to a good friend of mine at midnight which gave me a shot in the arm.
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Thu Jan 23, 2003
Cancer confirmed and I am admitted
Met Dr. Cohen’s PA. She did the initial exam. Noted my bad lab results out of the gate. Anemia, low platelet count and low White Blood Count. Surprised that I had no “symptoms” except a fever (100.4). After some waiting, Dr. Gary Cohen appeared. The gist…I have some bone marrow disease (read cancer). I have poor labs and need to be admitted immediately. He walk Marcy and I over to admitting and was signed in to the GBMC Oncology Ward around 4:00. They ordered a bunch of additional blood tests—cultures and a cross ref for blood. They order platelets from the Red Cross and started me on Antibiotics. I was getting some Tylenol for minor hip pain. Got my IVs and I was set. Long, stressful day. On tap for tomorrow was a CAT scan to check out my spleen and a bone marrow biopsy. Drank some Gatorade contrast stuff for the CAT scan
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Wed Jan 22, 2003
The C Word
Marcy woke up vomiting and a “hit by a truck day”. Not sure what was going on but determined it was a 24 hour flu with some generally neck issues. Sucked big time for Marcy. We got Hannah to baby sit Patrick in the morning. Marcy ran Libby up to Gran’s. Marcy took me to Dr. Codd to go over the results of the MRI. He pulled us in and gave us the not so good news…very abnormal MRI in the marrow. The write up had all kinds of junk about cancer, lesions. Dr. Codd made some calls to the main GBMC oncologist, Dr. Gary Cohen. Dr. Codd wrote a prescription for some stronger Pain Medicine (Dilawton sp??) We went down to his office immediately. He ordered up some preliminary blood work which we went and drew right away. Made an appointment for the next day at 2:00. Got home and decided I needed to get off the pain killers. Also called Gran to come get the kids since Marcy was quite ill and I was useless. Took my second and final Dilawton at 10.
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Tue Jan 21, 2003
A day or rest
Laid around most of the day doped up. I think the hip was feeling better. Marcy heading out with the kids to Mom’s. Called Dr. Codd and got an appointment for 10 on Wednesday. Marcy went to the Gym and ran some errands. Everyone home safe and sound.
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Mon Jan 20, 2003
Enough is enough
8:30 Appt. w/ Dr. Codd. I indicate that this is unacceptable and something is not right. He agrees and orders an MRI which he is able to get at 8:00 PM. Orders me up Prednisone. I cancel my flight back to Jacksonville. I do a fly by RDA but can barely walk. I turned in my expense reports and some docs from Alex Reyzin (team member on the Alltel project). Brutal ride home. Laid in Bed. Marcy was able to get the Pain Medicine but the prednisone was not in stock in one place and the Giant was a long wait. She left the prescription there to be filled later. While out I wondered downstairs to see the kids and some friends that were over with there kids. Very cool but I was in intense pain. Heading back up when Marcy got home. I tried everything to handle the pain but could not do it. When our guests left, I asked Marcy to take me to the emergency room. Sue picked up the kids and took them to Gran’s We went to GBMC, which is where the MRI is suppose to be but there was a 4 plus hour wait. Headed over to St. Joes. Quick check in but waited 4 hours before I finally got a shot to ease the pain. Took some more Percocet and headed over to the MRI appointment which were able to move to 9:30 give the ER delays. The MRI went pretty well. I was doped up pretty good. Got some Wendy’s afterward and then got the kids. Also, we called Megan to pick up my Prednisone. St, Joe gave me a starter does of 8 tablets. Said start w/ the packet as directed.
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Sun Jan 19, 2003
The Pain continues
Hip pain is once again acting up but quite intense this time. They all sucked but this one seems to be the start of something pretty crappy.
[The Hip pain began on November 4, 2002. I had steamed cleaned the house in prep for Marcy coming home with our second baby, Libby. I went to my ortho guy and he said it was hip bursitis. I got a cortisone shot. Things seemed better but the pain would come back anytime I did anything physical.]
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