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!
Tuesday, October 12, 2010
Funny thing
I always check the back of shampoo bottles and cosmetics, to make sure that they are not tested on animals. But when I was going through the literature on Sprycel, it gave statistics for uses in rodents and monkeys. This broke my heart. I had to take a drug that was tested on innocent animals.
I can't decide how to feel about it. JR had no problem, even said that if it turned out they were tested on the only talking whale in existence, and it saved my life, he was fine with it.
Would it be different for me if the drug were for someone I loved? Maybe.
But I don't have to like it.
I can't decide how to feel about it. JR had no problem, even said that if it turned out they were tested on the only talking whale in existence, and it saved my life, he was fine with it.
Would it be different for me if the drug were for someone I loved? Maybe.
But I don't have to like it.
A new day
Well, today is better. Mostly because I am doing not a whole lot. Trying to recover from yesterday. Did some scraping on the painted over windows on the trailer. Answered some email, answered some voicemail, and sat in the trailer trying to envision what it will look like. I thought I should really take pictures so everyone can follow along on this little journey.
It's not a pretty trailer. But it is mine.
It doesn't leak. Did you notice the cute original stove and oven? In AQUA.
It is something fun for me to think about. Don't mock. It's gonna be great.
It doesn't leak. Did you notice the cute original stove and oven? In AQUA.
It is something fun for me to think about. Don't mock. It's gonna be great.
Monday, October 11, 2010
So Tired
Today's lesson was to NOT power through. I didn't want to give in to the exhaustion, so I kept going. Went to work from 10 am until 2:30 pm, mostly going through files and finding clients that needed to go, writing them letters that their files had been non-progressive for more than a year, and I was no longer going to be their attorney.
Then home to get JR and go food shopping at the base. Kept falling asleep in the car, and then just wanted to be done after going to the exchange, but refused to listen to my body and continued on to the commissary. And that was the last thing I did.
Slept on the way home from the store, asked JR to put the food away (!), and went to bed. Got up after a couple of hours and had a sandwich, but am back in bed with computer on lap. And watching a marathon of Hoarders. Amazing show. Now THOSE people have problems.
I am really hoping that this tiredness goes away after a while. For the first time, CML felt unfair. I hadn't felt sick and all of a sudden I am on a drug for the rest of my life and I am so tired I can't even work a full day.
Sigh. Sorry this is not a more up beat post. But I am so tired.
Then home to get JR and go food shopping at the base. Kept falling asleep in the car, and then just wanted to be done after going to the exchange, but refused to listen to my body and continued on to the commissary. And that was the last thing I did.
Slept on the way home from the store, asked JR to put the food away (!), and went to bed. Got up after a couple of hours and had a sandwich, but am back in bed with computer on lap. And watching a marathon of Hoarders. Amazing show. Now THOSE people have problems.
I am really hoping that this tiredness goes away after a while. For the first time, CML felt unfair. I hadn't felt sick and all of a sudden I am on a drug for the rest of my life and I am so tired I can't even work a full day.
Sigh. Sorry this is not a more up beat post. But I am so tired.
Sunday, October 10, 2010
A Quiet Sunday
Today was spent making sure JR's computer was working properly. It had a virus and he took it to Best Buy's Geek Squad. A bunch of money later, it was home, but not set up the way he wanted. So I removed the programs that weren't needed, and installed the programs that he needed.
It was also spent looking for clever ways to begin work on the new trailer. Well, not so new, it is a 1965 small travel trailer. Only $200. So you can imagine, it needs a bunch of work. All the windows are either painted over, plexiglass, or strangely, stuffed with expanding foam. Today's best find was that two of the tiny windows on the top are in perfect shape, except for the paint on the glass.
I started around 10 am, unhooking the trailer from the truck. This meant that I had to figure out that the foot that holds up the front of the trailer was not in one piece, it is missing the bottom piece, and had to find a solution.....turned out to be a concrete cinder block from the side of the deck that was being used to keep puppies in the backyard when we are fostering.
So once that was fixed, I was off to RV World, thinking, hey, they call themselves "world," they must have everything! Nope. They are all about accessories. But they did give me the name and number of a place in Roy, WA that might be able to help. I think they thought I was going to restore the trailer. I am still of two minds about that. The two beds are wicked comfortable (yes, I lived in NH and occasionally still say 'wicked') and it seems wrong to take out things that I like. The kitchen isn't needed, but the appliances are original, so it seems wrong to take out things that are original. Sigh.
One of the things that I needed right away was a stabilizing system. Without being hooked to the trailer, the poor thing rocks too much to even attempt to step into it. RV World has a couple of choices for stabilizing jacks, but the least expensive is $50. Hmmmmm. Off to check out SportCo.
SportCo does have the jacks, but they are even more expensive. Rats.
Back home, work on the computer for 4 hours.
Made a yummy spaghetti sauce, grinding my own beef and making the sauce from scratch. It seems just as easy to make spaghetti sauce from scratch as it is to open a jar of store bought sauce. And it tastes so much better.
Then I went out to Home Depot to look for stabilization answers. I had very cleverly measured EACH AND EVERY CORNER to see how big the answer had to be. First I looked at the garden section, and checked out pavers. But luckily ran into a clerk who told me to also look in building supplies. All the way on the other side of the store. I took a big breath and started over to the far side. Normally, this wouldn't cause so much of a effort. But it seems that from about 12 noon to 5 pm, I am just exhausted. Oh well, I feel so much more normal than I thought I would. So off to the far side for me!
I found the aisle with the cinder blocks/bricks. And after deciding that bricks would have to do (cheaper and with 5 stacked would make the right height) I put about 30 of them in the basket before noticing the half cinder blocks! Perfect. Two per corner would to the trick, be more stable than the stack of bricks I had contemplated, and be cheaper. Gotta love that.
I emptied out my cart of bricks. And then went to put the new blocks in, and realized that I am too short to reach the shelf with them, and they are so far back, I am afraid that they will all come crashing down on my head. So off I go to find a salesperson. And I find one! He very nicely puts 8 of them in my cart and off I go.
They work perfectly. I had really thought about how to do this prior to doing it. I realized that I had to shorten the foot in front to raise up the back, then slide the blocks in. Then raise the front up higher than I need to slip those blocks in, then lower the foot so that the trailer is now sitting on the blocks. Ta Da! Stable trailer.
I swept out all the yuck and tried to start cleaning it with lysol. But I got too tired, so I got Chase and brought him in the trailer to see if we both fit on the bed. We do! We both had a little nap. It was so comfortable....
Yay, Trailer!
.......................best overheard word of the day "flustrated" Frustrated and flustered. Excellent!
It was also spent looking for clever ways to begin work on the new trailer. Well, not so new, it is a 1965 small travel trailer. Only $200. So you can imagine, it needs a bunch of work. All the windows are either painted over, plexiglass, or strangely, stuffed with expanding foam. Today's best find was that two of the tiny windows on the top are in perfect shape, except for the paint on the glass.
I started around 10 am, unhooking the trailer from the truck. This meant that I had to figure out that the foot that holds up the front of the trailer was not in one piece, it is missing the bottom piece, and had to find a solution.....turned out to be a concrete cinder block from the side of the deck that was being used to keep puppies in the backyard when we are fostering.
So once that was fixed, I was off to RV World, thinking, hey, they call themselves "world," they must have everything! Nope. They are all about accessories. But they did give me the name and number of a place in Roy, WA that might be able to help. I think they thought I was going to restore the trailer. I am still of two minds about that. The two beds are wicked comfortable (yes, I lived in NH and occasionally still say 'wicked') and it seems wrong to take out things that I like. The kitchen isn't needed, but the appliances are original, so it seems wrong to take out things that are original. Sigh.
One of the things that I needed right away was a stabilizing system. Without being hooked to the trailer, the poor thing rocks too much to even attempt to step into it. RV World has a couple of choices for stabilizing jacks, but the least expensive is $50. Hmmmmm. Off to check out SportCo.
SportCo does have the jacks, but they are even more expensive. Rats.
Back home, work on the computer for 4 hours.
Made a yummy spaghetti sauce, grinding my own beef and making the sauce from scratch. It seems just as easy to make spaghetti sauce from scratch as it is to open a jar of store bought sauce. And it tastes so much better.
Then I went out to Home Depot to look for stabilization answers. I had very cleverly measured EACH AND EVERY CORNER to see how big the answer had to be. First I looked at the garden section, and checked out pavers. But luckily ran into a clerk who told me to also look in building supplies. All the way on the other side of the store. I took a big breath and started over to the far side. Normally, this wouldn't cause so much of a effort. But it seems that from about 12 noon to 5 pm, I am just exhausted. Oh well, I feel so much more normal than I thought I would. So off to the far side for me!
I found the aisle with the cinder blocks/bricks. And after deciding that bricks would have to do (cheaper and with 5 stacked would make the right height) I put about 30 of them in the basket before noticing the half cinder blocks! Perfect. Two per corner would to the trick, be more stable than the stack of bricks I had contemplated, and be cheaper. Gotta love that.
I emptied out my cart of bricks. And then went to put the new blocks in, and realized that I am too short to reach the shelf with them, and they are so far back, I am afraid that they will all come crashing down on my head. So off I go to find a salesperson. And I find one! He very nicely puts 8 of them in my cart and off I go.
They work perfectly. I had really thought about how to do this prior to doing it. I realized that I had to shorten the foot in front to raise up the back, then slide the blocks in. Then raise the front up higher than I need to slip those blocks in, then lower the foot so that the trailer is now sitting on the blocks. Ta Da! Stable trailer.
I swept out all the yuck and tried to start cleaning it with lysol. But I got too tired, so I got Chase and brought him in the trailer to see if we both fit on the bed. We do! We both had a little nap. It was so comfortable....
Yay, Trailer!
.......................best overheard word of the day "flustrated" Frustrated and flustered. Excellent!
Saturday, October 9, 2010
Changing Drugs Before I Even Started
Friday started with me calling the pharmacy at SCCA to find out what the issue was.
I was asked my name, and who called me. I told them “Phil.”
“Oh, he isn’t in yet.” Pause.
“OK, can YOU help me?”
“What was your name again?”
I was told that my insurance would only allow for mail-in orders. I replied that that was not technically true, that my insurance allowed a 21 day supply from a retail pharmacy and would prefer that I used their mail order system. Then I was told that the pharmacy didn’t have Tasigna, and they were going to have to order it. Ok, when would it be in? They would call me back after checking.
Next I went online just to see if they covered Sprycel (the third drug available but not approved by the FDA quite yet). I found in on the list of approved drugs from Medco, then called them just to be really sure. I asked them specifically if they would cover this as a first drug for me. Since it isn’t FDA approved, sometimes they will only cover it if you don’t respond to the approved drugs. But no, they would cover it. I then went back to looking at the online information about it, and noticed a small asterisk.
When you clicked through, it brought you to a new area of Medco called Accredo. A specialty pharmacy for patients with cancer, MS etc, who were on unusual drugs. This specialty pharmacy had some neat extras, they overnight all the drugs for no extra charge, and give you any supplements that you need to take them, at no extra charge. So if you were having to inject yourself, the needles and syringes were free. Pretty nice!
So I called Accredo to ask about how I got my prescription to them. And they were so nice on the phone. Told me all about it and gave me the address to send the mail order prescription to. They will call to set up a time for delivery of the drugs and whether or not it needs to be signed for. OK! This will work for both Tasigna and Sprycel.
But something is telling me that Sprycel is the drug I want. I cannot explain it, I just know.
Next I call back the pharmacy to see when the Tasigna will be in. And I am told on Tuesday. Mind you, getting this information is not as easy as it sounds. I call to the pharmacy, someone answers. I tell them my name and that I was waiting to find out when my drugs would be in. They ask me who called me, I tell them “Phil”.
Then they say, “He’s not in yet. He will be here at 10.”
Pause.
“Can YOU help me?”
“What was your name again?” Edmiston.
“Let me see.” Wait two minutes. “Ok, they will be here on Tuesday.”
This presents a problem for me. Dr. Vivian has set up three appointments for me based on me already being on the drugs. So I email her nurse. SCCA does have wonderful availability to their patients. You get a huge pile of business cards with everyone’s personal number on it and their email. So I send her a note that asks what I should do, I can’t get the Tasigna until Tuesday, is there anyway I can switch to Sprycel, should I reschedule my appointments…..
Then I just put my head down. Trying to fight the system is tiring, especially when you have to fight the disease as well. I am so focused on getting the drug to start the treatment. That seems like the end goal for right now. And I will do everything I can to make that happen.
I figured that I would have to wait a while for an answer. So I went mushroom hunting with Kate. We get in the truck and head out for the Federation Forest, which is off of route 410. I know how to get there, but I miss the turn off and end up on the highway. Instead of just turning around and getting on the right road, we go for an hour long adventure, looking for the way around the river. Which gives Dr. Vivian a chance to call me on my cell phone!
Everything happens for a reason.
Dr. Vivian is, I think, ticked off that her own pharmacy doesn’t carry the drug she wants, and tells me that it is some contract issue, and that she had taken steps to prevent this from happening again. As her first “just diagnosed” patient in a while, there may be other things that I get to be the guinea pig on. I tell her that that is fine. And then we discuss switching to Sprycel. I still can’t quite say why I think I like it better, but she agrees that the statistics look good, there is not really a good reason why I can’t start on it, except for the FDA approval, and will my insurance cover it.
I tell her I already talked to my insurance and they had said yes. She is so happy to have a client that will interface directly with their insurance! And one who knows what is going on and can make decisions. So she says to rip up the Tasigna order, and she will switch it to Sprycel, now she just has to make sure that the pharmacy has it. She will call me back.
And off to the woods I go! Kate and I have a wonderful time puttering around the forest. We talk about my new disease and I am finally able to put into words, why I think Sprycel might be better.
On Tasigna, it has a side effect of raising your glucose. Mine is 124. 125 is diabetic. Also on Tasigna, you cannot eat 2 hours before or one hour after taking it. Knowing my obsessive mind around food, I can foresee this as being very very difficult for me. When I am work, I tend to forget to eat, and to take my medication. This might be a huge problem, you have to take the pills twice a day, 12 hours apart. None of this is true with Sprycel. Not that Sprycel doesn’t have it’s own freakshow of side effects…..
But back to the forest.
Someone else has been here before us and there aren’t any Chanterelles. Except for two teeny tiny little buttons. Sigh. Sadly, I took them. I didn’t want to leave empty handed. Even though there are signs everywhere that say you can’t mushroom hunt in this particular forest. Two tiny little mushies aren’t going to break them.
Mind you there are HUNDREDS of kinds of mushrooms everywhere! Boletes, rushulas, puffballs, aminitas, angel wings and many unidentified ones. Kate has a fabulous directory of mushrooms in her head, but there are so many of them we find some she hasn’t seen before. There are thousands of mushrooms in this forest. It is pretty darn cool! A quiet walk through the woods with friend and dog, mushroom book in hand, stopping to try and identify different kinds of boletes. There are some that stain blue when you handle them. Very interesting, Blue is not a common natural color.
We walked for hours it seemed. But was only about an hour and a half. Then we turned back and headed for home. I just didn’t have the energy to keep looking and wanted to see if Dr. Vivian had called back.
No message from her on my phone. So we just went back home, made some yummy chicken soup and had lunch and watched a silly movie.
JR called and asked if I had seen my email. Not yet. Seems he had written the general manager of El Gaucho and thanked him profusely. And gotten a beautiful note back!
I told JR I would read it in a few, when the movie was over. I had also made arrangements to go and see a $400 trailer that I have been dreaming about for camping. The movie ended. Kate went home. I hopped on the computer to get driving directions when I noticed not only the email from JR, but a note from Dr. Vivian.
Sprycel was available at the SCCA pharmacy, and I could come and pick it up as soon as I wanted. YIPEE! I call SCCA, it is after all, 4:30 p.m. Have I waited too long to find this email? (I start to beat myself up for this one) I finally find the right number for the pharmacy, and lo and behold they are open until 7 pm, although the nice lady says that they will actually fill prescriptions until 10 pm if you ask nicely. Good to know!
Called to cancel the trailer viewing. Called JR (who had been playing golf) to tell him that I was on my way to SCCA to get the drugs. He asked me to wait, he was almost home and we could go together.
Isn’t he wonderful???
So off to Seattle we go. I am half afraid that even though Medco has said yes to the drug, that in reality they will say no. I am also afraid that the pharmacy won’t have it.
We finally get there, and it turns out just fine, they have the drug, we have to wait because it hasn’t gone through the pharmacist yet (so even if I had seen the email sooner, it would not have been ready!), and 10 minutes later I am being handed my new pills. I pay $20 for a 21 day supply. And notice that the cost of 21 days supply (21 pills in all, you only take this once a day) is ………$5673.55. Holy Crap!
That is $98602 per year.
Thank GOD JR’s insurance just got rid of their $1M lifetime cap. Because I will have reached the $1M in drugs alone in only 10.14 years. YIKES.
The funny thing was, that once I got the pills, I all of a sudden became afraid of them. No one but me can even touch them. They are absorbed through the skin and if you breath the dust, it is bad. So they live in a plastic pouch in their pill vial. With a big sign on it: CAUTION: CANCER CHEMOTHERAPY.
It’s odd, but I don’t really think of myself as having cancer. But I guess I do. Most of the time I keep expecting someone to call me and say, “Did you say Edmiston? No no, Mrs. EMMINGTON has leukemia, not you.”
But no one has called.
Thursday, October 7, 2010
Long Hard Day at Seattle Cancer Care Alliance
Whew! That took all day. But in the end, it was a good day. We got there about 30 minutes early, parked, went upstairs and checked in. The building itself is beautiful, located at the south end of Lake Union. The waiting rooms are all on the inside curve of the building with floor to ceiling wall of windows overlooking the lake. There are lots of comfortable chairs and even leather recliners. We went past the gift shop, full of really cool cards and trinkets and gifts, stopping in to pass some time since we were still early for the appointment. We met some very nice people who were perusing the wares, and I fell into chat with a fellow dog lover.
Upstairs we went to the fourth floor, to the appointment with Dr. Oehler. We didn't have too long to wait, and they called us back to a tiny tiny little exam room. In walked Dr. Dim, Dr. Oehler's fellow. He explained that we would be meeting with him to go over my history and chart and getting some basic information about the different drugs available. He was nice, but clearly not that comfortable with how to disseminate the information to us. He seemed surprised that I understood the disease as well as I did. I wanted to know exactly how the drugs worked. He looked puzzled at how to tell me, so I helped him out by laying out what I knew, that my number 9 chromosome splits and a piece of my number 22 chromosome splits and they swap (trans-locate). But this was about all I understood. He then explained that the translocation caused a new protein to be formed, the bcr-abl protein, this is a problem because your cell's receptors take this new protein and it causes them to create and create and create immature white blood cells that cannot mature properly.
The drugs target the protein and block the cell's receptors from accepting the protein. Simple right?
Dr. Dim was pretty impressed that I caught all that. But I had been researching and reading and re-reading everything I could get my hands on, and everything MultiCare Cancer Center had given me. Little did he know, I am THE RESEARCH QUEEN!
So then we waited for Dr. Oehler to come in. She was wonderful. Very focused and very knowledgeable. The only thing that really threw me was that they seemed to not be sure who would be my oncologist, her or Dr. Inoue (Tacoma's oncologist). Now, don't get me wrong, I adore Dr. Inoue, he had the best bedside manner of all of them and he really made me feel comfortable. But Dr. Oehler is THE cml specialist, of the world.....
Easy decision for me. So we are going with Dr. Oehler and Tasigna as my drug until I reach a certain level of stabilization, then Dr. Inoue can take over. I also offered to be part of any drug trials that Dr. Oehler needed me to. She was happy to see a patient who had just been diagnosed, she mostly sees patients who are not doing well, she is their last resort. Which was nice for me too.
Then, because Tasigna can cause heart failure, I got an EKG, the first of many. Then it was off to the lab for blood work.
I am getting so good at blood work. I asked the nice man if he was going to be my vampire for today. After a second, he realized that that was a joke and laughed. I then introduced him to my bad veins, laid them out for him, told him that it works best in my right arm, my veins roll and collapse, and if he wanted to be successful, he should use a pediatric butterfly and then use a syringe to pull the blood out instead of putting the vials up to the needle. Poof! First try was golden. I love it when they listen!
JR went up to the pharmacy to get the Tasigna, but came back empty handed. They need to order the drug. Even THEY don't carry it. It is a rather special one I guess.
So we were finally done, and hungry. So we went to El Gaucho. Possibly the best steakhouse in Seattle, and definitely one of the most expensive. But JR said not to worry, that we needed a treat, so order what I wanted.
I wanted a nice big drink! We were so early at the restaurant that they weren't really opened yet, but the bartender greeted us and got us started. So I ordered a new kind of lemon drop made with honey. Yum!
Then they seated us in one of the wonderful booths on the upper level. If you haven't been to El Gaucho, allow me to introduce you. You walk in, and everything is painted black, the lights are dimmed, the kitchen is tiny and open to the room so you can watch the chefs. There are three wait staff for every table. They take amazing care of you. And our waitress tonight was so sweet, we started talking and it came up that we had had a hard day, and then why it was a hard day. Poor thing just looked struck at the word leukemia, but I quickly told it was ok, that if you were going to get leukemia, this was the very one to get, there were targeted drugs for me to take, and it was super lucky that we lived within 30 miles of the world center for my rare disease. After that she was just fine and chatted and we just had a great time talking about our dogs and camping.
We ordered a ton of food, JR started with French Onion Soup, I had the Tuna Tartaretartare was yummy, and then they brought the steaks, and a huge lobster tail that they said they thought we needed! We ate and ate and ate. It was all so yummy! Not a smidgen of room for dessert at all, although at El Gaucho they always bring over a huge fruit and cheese plate to end your meal. We forgot that, and were only able to stuff down two dates, one grape and a tiny piece of Gorgonzola.
And then they brought the bill and said that dinner was on the house..........CAN YOU BELIEVE IT? For the first time all day I burst into tears. I cannot believe how wonderful people are. Every last person I have talked to about this has been wonderful. Even creditors that I have had to call and tell them that I am not sure how they will get paid, have turned human and each of them has told me not to worry, that it is only money, to take care of myself, and that they would put a note in my file, and even though they may need to keep calling, they won't call for two weeks, and I should just let them know what it going on and they will work something out.
I hugged the waitress, and even the manager came over and gave us his card, telling us to let them know what they can do to help.
I love this life of mine. And people are amazing. You just have to let them be amazing.
More later........
Upstairs we went to the fourth floor, to the appointment with Dr. Oehler. We didn't have too long to wait, and they called us back to a tiny tiny little exam room. In walked Dr. Dim, Dr. Oehler's fellow. He explained that we would be meeting with him to go over my history and chart and getting some basic information about the different drugs available. He was nice, but clearly not that comfortable with how to disseminate the information to us. He seemed surprised that I understood the disease as well as I did. I wanted to know exactly how the drugs worked. He looked puzzled at how to tell me, so I helped him out by laying out what I knew, that my number 9 chromosome splits and a piece of my number 22 chromosome splits and they swap (trans-locate). But this was about all I understood. He then explained that the translocation caused a new protein to be formed, the bcr-abl protein, this is a problem because your cell's receptors take this new protein and it causes them to create and create and create immature white blood cells that cannot mature properly.
The drugs target the protein and block the cell's receptors from accepting the protein. Simple right?
Dr. Dim was pretty impressed that I caught all that. But I had been researching and reading and re-reading everything I could get my hands on, and everything MultiCare Cancer Center had given me. Little did he know, I am THE RESEARCH QUEEN!
So then we waited for Dr. Oehler to come in. She was wonderful. Very focused and very knowledgeable. The only thing that really threw me was that they seemed to not be sure who would be my oncologist, her or Dr. Inoue (Tacoma's oncologist). Now, don't get me wrong, I adore Dr. Inoue, he had the best bedside manner of all of them and he really made me feel comfortable. But Dr. Oehler is THE cml specialist, of the world.....
Easy decision for me. So we are going with Dr. Oehler and Tasigna as my drug until I reach a certain level of stabilization, then Dr. Inoue can take over. I also offered to be part of any drug trials that Dr. Oehler needed me to. She was happy to see a patient who had just been diagnosed, she mostly sees patients who are not doing well, she is their last resort. Which was nice for me too.
Then, because Tasigna can cause heart failure, I got an EKG, the first of many. Then it was off to the lab for blood work.
I am getting so good at blood work. I asked the nice man if he was going to be my vampire for today. After a second, he realized that that was a joke and laughed. I then introduced him to my bad veins, laid them out for him, told him that it works best in my right arm, my veins roll and collapse, and if he wanted to be successful, he should use a pediatric butterfly and then use a syringe to pull the blood out instead of putting the vials up to the needle. Poof! First try was golden. I love it when they listen!
JR went up to the pharmacy to get the Tasigna, but came back empty handed. They need to order the drug. Even THEY don't carry it. It is a rather special one I guess.
So we were finally done, and hungry. So we went to El Gaucho. Possibly the best steakhouse in Seattle, and definitely one of the most expensive. But JR said not to worry, that we needed a treat, so order what I wanted.
I wanted a nice big drink! We were so early at the restaurant that they weren't really opened yet, but the bartender greeted us and got us started. So I ordered a new kind of lemon drop made with honey. Yum!
Then they seated us in one of the wonderful booths on the upper level. If you haven't been to El Gaucho, allow me to introduce you. You walk in, and everything is painted black, the lights are dimmed, the kitchen is tiny and open to the room so you can watch the chefs. There are three wait staff for every table. They take amazing care of you. And our waitress tonight was so sweet, we started talking and it came up that we had had a hard day, and then why it was a hard day. Poor thing just looked struck at the word leukemia, but I quickly told it was ok, that if you were going to get leukemia, this was the very one to get, there were targeted drugs for me to take, and it was super lucky that we lived within 30 miles of the world center for my rare disease. After that she was just fine and chatted and we just had a great time talking about our dogs and camping.
We ordered a ton of food, JR started with French Onion Soup, I had the Tuna Tartaretartare was yummy, and then they brought the steaks, and a huge lobster tail that they said they thought we needed! We ate and ate and ate. It was all so yummy! Not a smidgen of room for dessert at all, although at El Gaucho they always bring over a huge fruit and cheese plate to end your meal. We forgot that, and were only able to stuff down two dates, one grape and a tiny piece of Gorgonzola.
And then they brought the bill and said that dinner was on the house..........CAN YOU BELIEVE IT? For the first time all day I burst into tears. I cannot believe how wonderful people are. Every last person I have talked to about this has been wonderful. Even creditors that I have had to call and tell them that I am not sure how they will get paid, have turned human and each of them has told me not to worry, that it is only money, to take care of myself, and that they would put a note in my file, and even though they may need to keep calling, they won't call for two weeks, and I should just let them know what it going on and they will work something out.
I hugged the waitress, and even the manager came over and gave us his card, telling us to let them know what they can do to help.
I love this life of mine. And people are amazing. You just have to let them be amazing.
More later........
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