Dr. Vivian was thrilled to show me lab work. She said she was pretty sure I was going to be happy with it, and I AM!! My white count is a mere 6, that's right folks, NORMAL. This drug is working so fast.
Now a white blood cell count is not the end result we are looking for, but it is a good indicator that the Sprycel is working. I can back off the weekly blood draws and go to two weeks then four weeks apart.
Yay!!
She explained that I still have millions of cancer cells floating around, they are just not making new ones, and the old ones should be dying off. But then there was a very detailed discussion of stem cells and phosphates and enzymes that I tried to follow....and now I need to do more research to understand what she was talking about.
But boy am I happy. I even had some energy today and went to work for a couple of hours. Then I have been grooming the doggie a bit. And found some fleas..........so an email to my wonderful Aunt Susan is in order......
Hugs!
Friday, October 29, 2010
Thursday, October 28, 2010
10-28-10 Brain Fog.........
So....JR comes in to my office where I have been catching up on email for a while, and he has has just walked the dog (isn't he great?). He remarks that he is hungry and going to get a bowl of cereal. I quickly offer to make him breakfast, as I adore cooking for him. He quickly takes me up on my offer as he adores my cooking. We decide on bacon, eggs and toast, although I have also offered pancakes or eggnog french toast.
I go to get up, and realize that I just needed to answer one more email.
20 minutes later JR comes in and looks at me. I look back at him. He looks at my screen. I am now piddlefarting along looking at a website about camping. I say "just some camping stuff," and he gives me a funny look.
I think to myself, "what the hell? I can't look at camping stuff?"
So he says, "Ok, I guess I'll just get a bowl of cereal."
My first thought is..........whatever.
Then comprehension dawns!
"OH MY GOSH--YOUR BREAKFAST!"
I bounce out of the chair and run to the kitchen. How did I forget I was going to cook him breakfast?
The message boards at the Leukemia Society talked about brain fogs. I didn't understand what they meant until now. I have like, zero, short term memory. Noticed that yesterday too. I can't keep recent thoughts or what someone JUST said, in my head.
Double sigh.
We are off to SCCA today for another round of Dr. appointments and blood draws. Will post the new numbers later today! I am expecting them to be very good.
I go to get up, and realize that I just needed to answer one more email.
20 minutes later JR comes in and looks at me. I look back at him. He looks at my screen. I am now piddlefarting along looking at a website about camping. I say "just some camping stuff," and he gives me a funny look.
I think to myself, "what the hell? I can't look at camping stuff?"
So he says, "Ok, I guess I'll just get a bowl of cereal."
My first thought is..........whatever.
Then comprehension dawns!
"OH MY GOSH--YOUR BREAKFAST!"
I bounce out of the chair and run to the kitchen. How did I forget I was going to cook him breakfast?
The message boards at the Leukemia Society talked about brain fogs. I didn't understand what they meant until now. I have like, zero, short term memory. Noticed that yesterday too. I can't keep recent thoughts or what someone JUST said, in my head.
Double sigh.
We are off to SCCA today for another round of Dr. appointments and blood draws. Will post the new numbers later today! I am expecting them to be very good.
Monday, October 25, 2010
10-25-10 Tired
Sorry that I have been silent this weekend, I am just so tired.
I am still short of breath, but in the mail today was a huge package from Bristol Myers, the makers of my medicine. They have sent me a nice pill dispensing thingie, and a bunch of reading material, diaries and folders to keep track of what is going on.
And on page 7 of the booklet, it says that one of the side effects of Sprycel is (insert drumroll here), shortness of breath. So I am not so worried. I may not have mentioned that I was very worried about the shortness of breath. I can't seem to walk more than a block without huffing and puffing and having to stop and try and catch my breath.
As a high energy person with lots of lovely bubbly energy, this has been very difficult.
Today's list of interesting things was that JR locked his keys in his trunk,............in SEATTLE. I was supposed to meet my wonderful friend Carolyn (very funny story about our names, for another time, maybe) for sushi in Federal Way, so I knew I was going to leave the house today.
However, Michelle Obama was also trying to use the roads in Seattle. And for some reason, she had priority. They shut down the entire I-5 and I-90 corridors for her. So I was winding my way through on the surface streets trying to listen for the traffic report on what WAS my favorite news radio station, when apparently in a fit of political correctness, the radio station hired a new reporter. Who STUTTERS. While I have sympathy for how hard it must be to stutter. Radio is really NOT the right forum. It took him forever to get the story out, and that made the news report (supposed to be on the "4"'s) not on time, and I missed one possible easy exit while waiting to hear what the slow down was for. Sigh.
Lunch with Carolyn was a blast and afterwards we went for some lovely fresh bread at a local bakery known for it's Frenchness. The baguette looks great, and dinner is going to be French onion soup with lots of wonderful melted cheesy goodness.
Then on the way home, I had to stop at the bank. The check I deposited from my business account to my personal account last Friday, got lost in the system. When I looked at the deposit ticket, I realized that the money went into a foreign account, not one of mine. So I stopped in Fife, a tiny little sneeze of a town, but they have a branch, and there were no people in line! So I got service right away, and a very nice helpful fellow named Rex has tried to fix the problem. I still don't have the money, but supposedly they are working on it.
Did I mention that dinner was going to be full of cheesy goodness? It will make up for this I hope.
Hugs to all, and to all a good Hug.
C
I am still short of breath, but in the mail today was a huge package from Bristol Myers, the makers of my medicine. They have sent me a nice pill dispensing thingie, and a bunch of reading material, diaries and folders to keep track of what is going on.
And on page 7 of the booklet, it says that one of the side effects of Sprycel is (insert drumroll here), shortness of breath. So I am not so worried. I may not have mentioned that I was very worried about the shortness of breath. I can't seem to walk more than a block without huffing and puffing and having to stop and try and catch my breath.
As a high energy person with lots of lovely bubbly energy, this has been very difficult.
Today's list of interesting things was that JR locked his keys in his trunk,............in SEATTLE. I was supposed to meet my wonderful friend Carolyn (very funny story about our names, for another time, maybe) for sushi in Federal Way, so I knew I was going to leave the house today.
However, Michelle Obama was also trying to use the roads in Seattle. And for some reason, she had priority. They shut down the entire I-5 and I-90 corridors for her. So I was winding my way through on the surface streets trying to listen for the traffic report on what WAS my favorite news radio station, when apparently in a fit of political correctness, the radio station hired a new reporter. Who STUTTERS. While I have sympathy for how hard it must be to stutter. Radio is really NOT the right forum. It took him forever to get the story out, and that made the news report (supposed to be on the "4"'s) not on time, and I missed one possible easy exit while waiting to hear what the slow down was for. Sigh.
Lunch with Carolyn was a blast and afterwards we went for some lovely fresh bread at a local bakery known for it's Frenchness. The baguette looks great, and dinner is going to be French onion soup with lots of wonderful melted cheesy goodness.
Then on the way home, I had to stop at the bank. The check I deposited from my business account to my personal account last Friday, got lost in the system. When I looked at the deposit ticket, I realized that the money went into a foreign account, not one of mine. So I stopped in Fife, a tiny little sneeze of a town, but they have a branch, and there were no people in line! So I got service right away, and a very nice helpful fellow named Rex has tried to fix the problem. I still don't have the money, but supposedly they are working on it.
Did I mention that dinner was going to be full of cheesy goodness? It will make up for this I hope.
Hugs to all, and to all a good Hug.
C
Thursday, October 21, 2010
10-21-10 THAT was a long day
So last night I had a voicemail from SCCA asking if it was ok to cancel my appointment today. I called back and left a message that that would be ok with me. I knew that I had another appointment set up for next Thursday, so I thought one week wouldn't matter too much.
Woke up today and was soooo tired. It was almost 10 am before I had enough energy to take the dog for his walkie. JR had been called to work the day before and he wasn't due back until tonight. We walked very slowly up to the main street and then walked up and down that street, which is my fall back route, when I want to be able to call for help if I need it--when I am not sure how much energy I have or will be able to call upon. But the walkie was fine, and Chase seemed to understand that we were going to go slow, and to not pull me.
When we got back to the house, there was another message from SCCA thanking me for being flexible, but Dr. Vivian still wanted me to have my labs done today, I should call them and figure out if I would go all the way to Seattle or use a local lab. I called Laura (my assigned nurse) back to make the lab arrangements, but she was concerned about my breathiness. I told her it was hard to catch my breath, and had been for a couple of days, but other than that, the pain was gone so I was doing well.
Apparently, being short of breath is very bad. I was told to keep my original appointment. But that meant, jumping in the car immediately, dog walking clothes and all.......this defeats my strategy to only show up wearing business attire, I have historically gotten much better care when dressed up. Oh, well.
I get there. And then spend the next 7 hours there going for various tests. The splendid news was that my blood count was down again! It is only a 14 this week. I am stunned at how fast the Sprycel is working. But they were very concerned about my blood oxygen levels, so I was off for a chest X-ray, then an EKG, both of which were fine, but then they sent me for a chest CT scan to make sure. That took the longest.
The tech tried to get the line in my vein, but failed twice. I am going to bruise up with those big time. She just dug and dug. I finally asked her to get someone else. The RN got it on the first try with little pain. sigh. so much better.
I will know more tomorrow about the scan, but they were thinking that it would be mostly a side effect of the fatigue and not fluid building around the heart. But they wanted to be sure.
JR got done with work, and since he had been working out of Seattle by chance, he came by the center and sat with me while they set up the scan, then we both drove home in separate cars. He is so wonderful. Poor man had been at work since 4 am, but sat and waited with me for hours after working for 13 hours.
I love him.
Again, good news that the White Blood Count is plummeting!!!!
Woke up today and was soooo tired. It was almost 10 am before I had enough energy to take the dog for his walkie. JR had been called to work the day before and he wasn't due back until tonight. We walked very slowly up to the main street and then walked up and down that street, which is my fall back route, when I want to be able to call for help if I need it--when I am not sure how much energy I have or will be able to call upon. But the walkie was fine, and Chase seemed to understand that we were going to go slow, and to not pull me.
When we got back to the house, there was another message from SCCA thanking me for being flexible, but Dr. Vivian still wanted me to have my labs done today, I should call them and figure out if I would go all the way to Seattle or use a local lab. I called Laura (my assigned nurse) back to make the lab arrangements, but she was concerned about my breathiness. I told her it was hard to catch my breath, and had been for a couple of days, but other than that, the pain was gone so I was doing well.
Apparently, being short of breath is very bad. I was told to keep my original appointment. But that meant, jumping in the car immediately, dog walking clothes and all.......this defeats my strategy to only show up wearing business attire, I have historically gotten much better care when dressed up. Oh, well.
I get there. And then spend the next 7 hours there going for various tests. The splendid news was that my blood count was down again! It is only a 14 this week. I am stunned at how fast the Sprycel is working. But they were very concerned about my blood oxygen levels, so I was off for a chest X-ray, then an EKG, both of which were fine, but then they sent me for a chest CT scan to make sure. That took the longest.
The tech tried to get the line in my vein, but failed twice. I am going to bruise up with those big time. She just dug and dug. I finally asked her to get someone else. The RN got it on the first try with little pain. sigh. so much better.
I will know more tomorrow about the scan, but they were thinking that it would be mostly a side effect of the fatigue and not fluid building around the heart. But they wanted to be sure.
JR got done with work, and since he had been working out of Seattle by chance, he came by the center and sat with me while they set up the scan, then we both drove home in separate cars. He is so wonderful. Poor man had been at work since 4 am, but sat and waited with me for hours after working for 13 hours.
I love him.
Again, good news that the White Blood Count is plummeting!!!!
Tuesday, October 19, 2010
10-19-10 Well.............
Turns out the reason I felt so good, was because I forgot to take my medicine the night before. Sigh.
I was feeling so good, that it got me thinking, and I counted out the pills left in the pouch in the vial, and sure enough, there was one too many.
So I took the pill last night, then had a horrid night, pain was back, couldn't sleep, ended up back on the couch all night long watching stupid late night movies. And watching the clock for when I could take more tylenol.
Can't tell if I am tired today because I didn't sleep or because of the Sprycel fatigue.
Ah well. At least I got some work done! Yawn......back to the couch for me.
I was feeling so good, that it got me thinking, and I counted out the pills left in the pouch in the vial, and sure enough, there was one too many.
So I took the pill last night, then had a horrid night, pain was back, couldn't sleep, ended up back on the couch all night long watching stupid late night movies. And watching the clock for when I could take more tylenol.
Can't tell if I am tired today because I didn't sleep or because of the Sprycel fatigue.
Ah well. At least I got some work done! Yawn......back to the couch for me.
Monday, October 18, 2010
10-18-10 A Splendid Day!
Today I was able to not take pain meds, and had tons of energy! I did a bunch of work on the computer, caught SG up with all of his new cases, then fixed hubbie's computer (have I mentioned that I hate his computer?), then puttered around with the trailer and got most of the windows scrapped clear of the paint.
A fabulous find: the trailer is actually silver! Just like an Airstream, some silly person painted it white with household paint, so that will all have to be scrapped off too.
I can't wait to see what tomorrow brings. I may have overdone it today......
Also, poor Chase had to have a bath. He rolled in something so vile, it was unspeakable. He does so hate his bath. I had to corral him from the upstairs guest room where he was hiding, then he ran into our bedroom, then he tried to lay down on the landing on the stairs, then he tried to go into my office, then he tried to go into JR's office, then he hid under the dining room table, then he tried to disappear into the basement (door was closed, not sure what he was thinking here), and finally laid down in front of the tub. I had to lift his ass into the tub. With every hair on this body drooping.
Poor baby.
But he smells great, he got lots of good boy yummies, and a whole afternoon out in the sun in the front yard.
Not a bad day to be my dog.
Hugs to everyone!
A fabulous find: the trailer is actually silver! Just like an Airstream, some silly person painted it white with household paint, so that will all have to be scrapped off too.
I can't wait to see what tomorrow brings. I may have overdone it today......
Also, poor Chase had to have a bath. He rolled in something so vile, it was unspeakable. He does so hate his bath. I had to corral him from the upstairs guest room where he was hiding, then he ran into our bedroom, then he tried to lay down on the landing on the stairs, then he tried to go into my office, then he tried to go into JR's office, then he hid under the dining room table, then he tried to disappear into the basement (door was closed, not sure what he was thinking here), and finally laid down in front of the tub. I had to lift his ass into the tub. With every hair on this body drooping.
Poor baby.
But he smells great, he got lots of good boy yummies, and a whole afternoon out in the sun in the front yard.
Not a bad day to be my dog.
Hugs to everyone!
Sunday, October 17, 2010
10-17-2010 Good News/Bad News
The good news: at this week's Dr. appointment, my white blood cell count went from a 33 down to 24, after only one week on the Sprycel. This is an amazing result as far as I am concerned. I did not expect the drug to work so quickly. I only have some side effects, not as bad as if I were on Gleevec. There are some small ulcers on my tongue, small patches of dry skin flaking off, extreme fatigue and bone pain. It would be worse if I were on different drugs.
The bone pain is pretty bad, it has been excruciating and Dr. O explained that it was because the bone marrow was filled with too many cells and that the drugs were causing the bad cells to die off. Once the bone marrow was cleaned out, the pain would subside. But until then, it is a pain from the inside out, there are no good positions, and sitting and lying down make it worse. But the fatigue forces you to lay down.
So Dr. Xie (turns out his name is not Dim--I got confused because his first name is Bin, and I just misheard him) prescribed Percocet for the pain. Unfortunately, I have now developed a sensitivity to the Percocet. And yesterday was spent writhing on the couch in pain and watching the clock waiting for the Percocet to leave my system. It made me so nauseous, I cannot describe how bad it was. So no more Percocet for me.
Poor Jennifer D called in the middle of the bad. It turns out that I scared her pretty badly, I was slurring my words and couldn't make sentences. But luckily, I have the best neighbors on the planet, and Rose next door came over and held my hand, went to the store and got me some juice and checked up on me during the day.
I finally took some Advil PM last night in a last ditch effort to get some sleep, and was able to sleep and woke up with no pain!!! It is slowly coming back this morning, so I am going to pop some tylenol in a minute. But to be pain free for a minute is amazing.
This journey is interesting. I am so glad that there is a drug to take, and so unhappy that I have to take a drug. I just need to remember to keep fighting and laughing and loving. So I shall!
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