First off, I want to thank all my friends, family and co-workers for their support and encouragement. I can't begin to express how much strength, courage and determination it provides me get through the long boring days. You are all awesome and I love you all!
I am at the outpatient clinic again today, waiting for my blood results to determine if I need platlets today. As much of a pain it is to drive to LDS almost every day, it is sooo much better than having to be admitted. I love being home. I went dress shopping with Shylee yesterday and helped Jason work on the mess in the basement. I feel great. I got approval to start jogging on my treadmill (we shall see if I can even handle a mile).
To everyone that has asked me what the next step is, here is what I have determined (since they haven't told me anything). I am waiting for my counts to recover. Once they do, I will have another bone marrow biopsy to see if all the blasts are gone. If they are, then it is straight on to transplant. If not, then I have to go through another A side of chemo and test again. You all know how impatient I am, so obviously I am ready to move on to transplant. I keep telling the blasts, to get the hell out of my marrow haha. I am sure they are not listening to me, kinda like children.
Sunday, January 30, 2011
Friday, January 28, 2011
Vampire Day
Blood, I need blood.
Hanging in the outpatient clinic waiting to get a transfusion. Joy, joy. I was released from my prison cell on Sunday, and since then, I have had to return to the outpatient clinic Monday for medications (the pharmacy didn't have my gold plated drug in stock) Tuesday for testing and a LP. Contrary to the name, this is not an old album (our kids wouldn't even know what that is) but my FINAL lumbar puncture. Woot, woot, Happy Dance!!!!!!!! Thursday for blood work and again today, Friday because my counts were getting low and they thought I would need platlets. Amazingly my platets maintained and even rose a little overnight, but the red blood cells dropped. So me and old three fingers (that is what my central line is called since is always groaping me) are hanging out (not literally) waiting for the pharmacist to get my blood.
Have I told you how awesome all the nurses and CNAs are at this hospital? They are the best, but for some reason the pharmacy and the doctors all seem to move in sloooooow motion. It is all a waiting game with them. And you all know how patient I am. Hell, I have been wanting to go back to work, but the doctors won't let me (which is probably a good thing). I am sure when I have to come in for the bone marrow transplant I will be climbing the walls of the prison cell by the time I get to go home.
Hanging in the outpatient clinic waiting to get a transfusion. Joy, joy. I was released from my prison cell on Sunday, and since then, I have had to return to the outpatient clinic Monday for medications (the pharmacy didn't have my gold plated drug in stock) Tuesday for testing and a LP. Contrary to the name, this is not an old album (our kids wouldn't even know what that is) but my FINAL lumbar puncture. Woot, woot, Happy Dance!!!!!!!! Thursday for blood work and again today, Friday because my counts were getting low and they thought I would need platlets. Amazingly my platets maintained and even rose a little overnight, but the red blood cells dropped. So me and old three fingers (that is what my central line is called since is always groaping me) are hanging out (not literally) waiting for the pharmacist to get my blood.
Have I told you how awesome all the nurses and CNAs are at this hospital? They are the best, but for some reason the pharmacy and the doctors all seem to move in sloooooow motion. It is all a waiting game with them. And you all know how patient I am. Hell, I have been wanting to go back to work, but the doctors won't let me (which is probably a good thing). I am sure when I have to come in for the bone marrow transplant I will be climbing the walls of the prison cell by the time I get to go home.
Tuesday, January 25, 2011
Round 2 Ding, ding ding ding, ding
O.k. you are supposed to imaging here, the bikini clad girl walking around the ring holding the Round 2 sign. Oh wait. This is MY blog, imagine a really hot, sexy, guy in Levi jeans, with 6-pack abs holding the sign instead. :)
Went back into the hospital on Wednesday Jan 19. I started out going to imaging to have my central line put in. My appointment was for 8, but they didn't get me in until 10:30. Gotta love Doctors. I don't know why, but I decided I didn't need to be sedated (honestly, I was pretty relaxed on my own). They did numb me locally, I am not that crazy. I was finally able to get up to the 8th floor by 1 and when I looked at my line i thought, "what the heck were they thinking?" The doc can adjust the line so it falls a little to the side, but NO, I guess she thought the tubes should end on top of my right breast. Seriously? Good thing I am not modest.
I started Methotrexate at 6 p.m. The first bag runs for two hours and the second for 22 hours. I was feeling pretty good, other than this particular chemo is extremely poisonous to your system. I had to have eye drops for times a day to prevent conjunctivitis. It also causes mouth sores (luckily I didn't get these) Yeah, safe stuff. 12 hours after completing it, I had to get leucovorin to clear it from my body. At least it didn't make me sick like the Cytarabine which I started Thursday night. I was completely out of it Friday and nauseous through Sunday. I still have a nasty taste in my mouth, like their is a fuzzy film over my tongue, but I tried to keep eating so they would let me go home.
I was released on Sunday. Woot, woot! I was downplaying my nausea so the doc would let me go. Besides, I eat better at home.
I had to go in yesterday for a shot and my Dasatinib (my $8000 chemo pill) which I will pickup today. The insurance did approve it, so my co-pay is $2616....pretty sweet huh? NOT. I also get to have another LP today and labs. Oh joy!
Went back into the hospital on Wednesday Jan 19. I started out going to imaging to have my central line put in. My appointment was for 8, but they didn't get me in until 10:30. Gotta love Doctors. I don't know why, but I decided I didn't need to be sedated (honestly, I was pretty relaxed on my own). They did numb me locally, I am not that crazy. I was finally able to get up to the 8th floor by 1 and when I looked at my line i thought, "what the heck were they thinking?" The doc can adjust the line so it falls a little to the side, but NO, I guess she thought the tubes should end on top of my right breast. Seriously? Good thing I am not modest.
I started Methotrexate at 6 p.m. The first bag runs for two hours and the second for 22 hours. I was feeling pretty good, other than this particular chemo is extremely poisonous to your system. I had to have eye drops for times a day to prevent conjunctivitis. It also causes mouth sores (luckily I didn't get these) Yeah, safe stuff. 12 hours after completing it, I had to get leucovorin to clear it from my body. At least it didn't make me sick like the Cytarabine which I started Thursday night. I was completely out of it Friday and nauseous through Sunday. I still have a nasty taste in my mouth, like their is a fuzzy film over my tongue, but I tried to keep eating so they would let me go home.
I was released on Sunday. Woot, woot! I was downplaying my nausea so the doc would let me go. Besides, I eat better at home.
I had to go in yesterday for a shot and my Dasatinib (my $8000 chemo pill) which I will pickup today. The insurance did approve it, so my co-pay is $2616....pretty sweet huh? NOT. I also get to have another LP today and labs. Oh joy!
Wednesday, January 19, 2011
Back in the Hospital
January 19
The days at home went by waaaayyyy to fast. It was really hard to come back, but I have the admit the staff here is really nice. They were all so happy to see me (it is probably the $$$ signs above my head). I did figure one thing out. Medical employees are worse then government employees (hehehe). I had an appointment at 8 to have my central line put in. I was there for 2 1/2 hours before they even started the procedure and then I waited for another 1 1/2 while they tried to figure out how to transport me to the 8th floor. I finally convinced them that I could walk.
I am suppose to start my next round of chemo at any time now. This time I am only suppose to be in until it clears my systems, so about 5 days. Then we move to transplant. Did I mention that my sister is a perfect match? I cried the day I found out, I was so excited. THAT is when it is going to be hard to come to the hospital. I will be here for 2 to 3 months. I will be soooo glad when 2011 is over and I have my life back.
The days at home went by waaaayyyy to fast. It was really hard to come back, but I have the admit the staff here is really nice. They were all so happy to see me (it is probably the $$$ signs above my head). I did figure one thing out. Medical employees are worse then government employees (hehehe). I had an appointment at 8 to have my central line put in. I was there for 2 1/2 hours before they even started the procedure and then I waited for another 1 1/2 while they tried to figure out how to transport me to the 8th floor. I finally convinced them that I could walk.
I am suppose to start my next round of chemo at any time now. This time I am only suppose to be in until it clears my systems, so about 5 days. Then we move to transplant. Did I mention that my sister is a perfect match? I cried the day I found out, I was so excited. THAT is when it is going to be hard to come to the hospital. I will be here for 2 to 3 months. I will be soooo glad when 2011 is over and I have my life back.
Sunday, January 16, 2011
Catching up
I tried to give you a little background but it would be impossible to fully catch up to this point, so I am going to just work from here on out. I am HOME. O.k is it only until Wednesday, when I start my next round of chemo, but it is still home. My Neutrophils hit 600 on Friday so they gave me a few days leave. It is so great to be here, but also hard. It feels normal and I want so bad for things to be normal again that I catch myself tearing up more. However, I wouldn't trade it for the world. I made it home for Bay's birthday. YEA The only bad part is I have headaches from the Lumbar Puncture I had on Thursday, so I have to lay down a lot. :(
Philadelphia Chromosome
So not only am I the lottery winner at getting ALL (only 1280 cases in the US in 2010) but I also have the philadelphia chromosome which is a bonding of the 9 and 22 chromosome (only 20% of ALL patients have this) Think of the odds. I think my chances of the winning the lottery were better than this. I guess if I am going to do, I am going to do it right.
The addition of this problem confirms that I need a transplant. It also bring another joy. I found out the drug to treat it costs $8000.00/mo. Oh JOY! Yes I have insurance, but this is a trial drug and they haven't confirmed they are going to cover it yet.
The addition of this problem confirms that I need a transplant. It also bring another joy. I found out the drug to treat it costs $8000.00/mo. Oh JOY! Yes I have insurance, but this is a trial drug and they haven't confirmed they are going to cover it yet.
Friday, January 14, 2011
Ugh!
FYI: Do not go into the hospital expecting to get any sleep! During the chemo treatment, they were pumping so many liquids into me I had to get up and go to the bathroom every 20 minutes during the day and about every hour during the night. In addition, they are constantly taking vitals and labs have to be taken between 3 and 5 every morning. How are you supposed to get any rest????
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