I think most decisions are better made when you're still stewing...
So, I made an appointment with a new Oncologist. Dr. Larry Cripe is the Leukemia guy to see at IU Med Center so hopefully I've got a winner...given that I learned my last guy is more of a prostate guru.
To be fair to Dr. Dugan (my current Oncologist) - I was just thrown at him from the emergency room. I certainly didn't have much of a choice as they were sticking a needle in my hip bone and at the point I was probably in a bit of shock (both literally and figuratively). I'm sure he was on call that night and got stuck with me - an overly researched, slightly hypochondriacal patient that routinely assumes he's on his death bed (I'm being dramatic).
Dr. Cripe studied at Rush Med center in Chicago and Duke. More details about him are available here. I think he'll be right up my alley. A big bonus is that IU is part of the Clarian/Methodist network so all my counts, tests, etc are available to them right away. A 2nd bonus is that IU is completing their new cancer center that I have visited a couple times...and it seems to be the Taj Mahal of hospitals, you can check out further details here.
Anyway, I hope I like this new guy and I hope that he's the real deal. I'm not sure how you break up with a doctor, but at the end of the day - nobody cares more about me...than me.
Wednesday, July 16, 2008
Tuesday, July 15, 2008
well...
I got my stuff back from Dr. Dugan today. Actually - I only saw Dr. Dugan for about 45 seconds, but his practicioner pulled all my numbers for me.
In short - I'm not sure what is going on. I'm considered to be in Hematologic remission, but the results of my PCR-ABL test don't really tell me anything. It essentially says that I am positive for the chromosome 9-22 transversal (which I already knew), and negative for PML 15-17 chromosome fusion. I guess its good that I don't have any other chromosomes flipping around, but I was expecting some sort of number.
Dr. Dugan said that the numbers become important in the next three months then again at a year. My concern is I think I got the wrong test so in three months they're going to realize that we should have gotten a different one. I also learned the Dr. Dugan is actually a prostate specialist and Dr. Bhatia is their hemo guru. I'm tempted to get a 2nd opinion at this point - I feel like I'm the one doing all the leg work/research and most of the time I don't even get my questions answered.
To top things off, my Bilirubin levels are really elevated. I have been told for years that they're higher than normal, but they seemed really high (and rising) during this last test. I'm supposed to get a call from Novartis in the next day or two to talk with them about this and the glaucoma as potential side effects. For $3,000 per month, I would expect to be less of a guniea pig.
I'm probably coming across as angry - which I'm not. Just frustrated that I seem to be the only one who even reads my blood counts and data.
Grrrrrr...
In short - I'm not sure what is going on. I'm considered to be in Hematologic remission, but the results of my PCR-ABL test don't really tell me anything. It essentially says that I am positive for the chromosome 9-22 transversal (which I already knew), and negative for PML 15-17 chromosome fusion. I guess its good that I don't have any other chromosomes flipping around, but I was expecting some sort of number.
Dr. Dugan said that the numbers become important in the next three months then again at a year. My concern is I think I got the wrong test so in three months they're going to realize that we should have gotten a different one. I also learned the Dr. Dugan is actually a prostate specialist and Dr. Bhatia is their hemo guru. I'm tempted to get a 2nd opinion at this point - I feel like I'm the one doing all the leg work/research and most of the time I don't even get my questions answered.
To top things off, my Bilirubin levels are really elevated. I have been told for years that they're higher than normal, but they seemed really high (and rising) during this last test. I'm supposed to get a call from Novartis in the next day or two to talk with them about this and the glaucoma as potential side effects. For $3,000 per month, I would expect to be less of a guniea pig.
I'm probably coming across as angry - which I'm not. Just frustrated that I seem to be the only one who even reads my blood counts and data.
Grrrrrr...
Sunday, July 13, 2008
whewww!
Had a really busy weekend. Lots of projects around the house and for the first time in quite some time...we got most of them done. The biggest job on the agenda was remulching our beds and putting in an edge border. Normally I'm not a huge fan of the borders because they're always cracked, kinked and otherwise unsightly. In spite of this - I purchased 160' of said border and went to work.
My mom and dad came down and helped me plant about 20 perennials in a bed just off our back deck. Kris and I are really happy with the outcome which was capped off with an evening water courtesy of our rain barrel.
Here are three pics from the weekend festivities. I'm just happy that I was able to keep my energy up enough to be a useful helper.
My mom and dad came down and helped me plant about 20 perennials in a bed just off our back deck. Kris and I are really happy with the outcome which was capped off with an evening water courtesy of our rain barrel.
Here are three pics from the weekend festivities. I'm just happy that I was able to keep my energy up enough to be a useful helper.
Friday, July 11, 2008
hemo update.
Apparently the Gleevec is still working (maybe a little too well).
Whities - 3,300 (down from 3,400, this is a little low but ok for Leukemia folks)
ANC - 1,600 (down from 1,700, but still in the low normal range)
Platelets - 158,000 (up 8,000 and in the normal range)
Hemoglobin - 13.1 (down from 13.2)
Hematocrit - 37.9 (up from 37.3)
So, even though I'd love to have a few higher counts, I'm ok with this. Only a small drop in fighters and total whites.
I took Eli to Dr. Yancy this morning for a quick physical before he starts his new school tomorrow. He went with me to my blood draw first and I think he felt like he dodged a bullet when we got up and left after only I had my blood done. Little did he know that he was going to get a tetanus and polio shot in his legs 30 minutes later. The appointment was fine and aside from a little eczema, he's a healthy boy. I think he was 48 pounds, 42 inches and all boy.
Kris looks like she has strep throat and sadly Maris may have picked up a touch of it as well. On top of this, Mar and Eli often share a water bottle - it may make the rounds in our house before the weekend is over.
Whities - 3,300 (down from 3,400, this is a little low but ok for Leukemia folks)
ANC - 1,600 (down from 1,700, but still in the low normal range)
Platelets - 158,000 (up 8,000 and in the normal range)
Hemoglobin - 13.1 (down from 13.2)
Hematocrit - 37.9 (up from 37.3)
So, even though I'd love to have a few higher counts, I'm ok with this. Only a small drop in fighters and total whites.
I took Eli to Dr. Yancy this morning for a quick physical before he starts his new school tomorrow. He went with me to my blood draw first and I think he felt like he dodged a bullet when we got up and left after only I had my blood done. Little did he know that he was going to get a tetanus and polio shot in his legs 30 minutes later. The appointment was fine and aside from a little eczema, he's a healthy boy. I think he was 48 pounds, 42 inches and all boy.
Kris looks like she has strep throat and sadly Maris may have picked up a touch of it as well. On top of this, Mar and Eli often share a water bottle - it may make the rounds in our house before the weekend is over.
Monday, July 7, 2008
I know what you're thinking...
What kinda of parent allows their four-year-old to run around the yard with a lit incendiary device...
ANSWER: the same kind that allows their two-year-old to do it.
Had a nice 4th weekend. I felt pretty good almost the entire weekend and got a lot of family time in.
An impromptu party erupted in our yard about an hour before the municipal fireworks show. Two additional downtown families and their children showed up and mayhem ensued. I put up our tent in the front yard and all the kids piled in for the show (bribed with popcorn) I'm guessing no less than six fireflies gave their life that night as the kids tried to capture them in the 'bug corral'.
Just one more week until I get my blood work back. I'm anxious, but in a good way...I kinda have a good feeling about it (don't ask me why). It's my first one so the results are just what they are. During the subsequent tests we will hope for something called Log reductions (a logarithmic count of the Leukemic cells).
On the home front, I am currently working on a yard project and Kristin is in the midst of revamping her office. Stay tuned!
ANSWER: the same kind that allows their two-year-old to do it.
Had a nice 4th weekend. I felt pretty good almost the entire weekend and got a lot of family time in.
An impromptu party erupted in our yard about an hour before the municipal fireworks show. Two additional downtown families and their children showed up and mayhem ensued. I put up our tent in the front yard and all the kids piled in for the show (bribed with popcorn) I'm guessing no less than six fireflies gave their life that night as the kids tried to capture them in the 'bug corral'.
Just one more week until I get my blood work back. I'm anxious, but in a good way...I kinda have a good feeling about it (don't ask me why). It's my first one so the results are just what they are. During the subsequent tests we will hope for something called Log reductions (a logarithmic count of the Leukemic cells).
On the home front, I am currently working on a yard project and Kristin is in the midst of revamping her office. Stay tuned!
Tuesday, July 1, 2008
mud creek.
The family and I went up to see my mom and dad this past weekend. About 500 yards deep into the woods behind their place is a large creek that Eli has decided is his. We packed up his Scooby Doo fish pole and went angling.
S N A F U
Ok, that's probably being a little dramatic.
Just a quick update. I got back the results of my cardiac ultrasound...normal, unremarkable.
Unremarkable! I am completely remarkable. What do I have left if I can't complain about Leukemia or heart ailments? At least now I can lean on the glaucoma until something else breaks ;-).
Kris and I took the kids to the park last night with hopes of wearing them out. It didn't work. Eli was still up at 9:30 and Maris tested out her vocal chords for at least 30 minutes before succumbing to exhaustion. I know kids aren't like dogs and they can access memories, but fortunately for us - Eli and Maris seem to forget how angry they were the night before and start each day with a smile (and raisin toast).
Just a quick update. I got back the results of my cardiac ultrasound...normal, unremarkable.
Unremarkable! I am completely remarkable. What do I have left if I can't complain about Leukemia or heart ailments? At least now I can lean on the glaucoma until something else breaks ;-).
Kris and I took the kids to the park last night with hopes of wearing them out. It didn't work. Eli was still up at 9:30 and Maris tested out her vocal chords for at least 30 minutes before succumbing to exhaustion. I know kids aren't like dogs and they can access memories, but fortunately for us - Eli and Maris seem to forget how angry they were the night before and start each day with a smile (and raisin toast).
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