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????
Into the Depth
December 25 - 29, 2010 - Days 3, 4, 5, and 6
O.k., O.k I know. How can I group Christmas Day with the other days. It did start out good. I did get to spend time with my husband and girls opening presents, but this was the beginning of chemo and also when fear crept in. I had thoughts of what would happen if I died. My sister told me there were lots of Angels around to support me through this, but at this time, I couldn't feel them. I was scared!!!! I wanted to watch my girls grow up and live their lives. I was afraid of what this would do to Shylee's college goal of becoming a doctor. It would probably knock her off track. And Baylie....she was too young. She still needed her mother. Jason and I were supposed to grow old together. When we retired we were going to move to the Caribbean. This sounds stupid, but I didn't want to think of him marrying someone else. He was the love of my life and he was mine. I remember lying on the puny hopital bed and crying together.
I couldn't tell you what the turning point was through all this, maybe it was when the priest from St. Ambrose came up and took my confession, gave me communion, and gave me an annointing for the sick. His prayers for me were such that I felt that the Lord had more for me to do. His final words for me were "I will see you in Heaven" Funny, but these words helped me not to be afraid of dying anymore.
Sometime after this I resolved that everything was going to work out and be all right. I was going to make it through this and the feeling came over me that this was true. So I approached the chemo with the resolve that it was just a step I needed to take to get well and go home.
O.k., O.k I know. How can I group Christmas Day with the other days. It did start out good. I did get to spend time with my husband and girls opening presents, but this was the beginning of chemo and also when fear crept in. I had thoughts of what would happen if I died. My sister told me there were lots of Angels around to support me through this, but at this time, I couldn't feel them. I was scared!!!! I wanted to watch my girls grow up and live their lives. I was afraid of what this would do to Shylee's college goal of becoming a doctor. It would probably knock her off track. And Baylie....she was too young. She still needed her mother. Jason and I were supposed to grow old together. When we retired we were going to move to the Caribbean. This sounds stupid, but I didn't want to think of him marrying someone else. He was the love of my life and he was mine. I remember lying on the puny hopital bed and crying together.
I couldn't tell you what the turning point was through all this, maybe it was when the priest from St. Ambrose came up and took my confession, gave me communion, and gave me an annointing for the sick. His prayers for me were such that I felt that the Lord had more for me to do. His final words for me were "I will see you in Heaven" Funny, but these words helped me not to be afraid of dying anymore.
Sometime after this I resolved that everything was going to work out and be all right. I was going to make it through this and the feeling came over me that this was true. So I approached the chemo with the resolve that it was just a step I needed to take to get well and go home.
Thursday, January 13, 2011
Reality Bites
December 24, 2010 - Day Two
Between having x-rays. lumbar punctures and a MRI (which I will tell ya about later) I meet Doctor Asch. She is spitfire and part of the team of 5 doctors that are 'leukemia gurus'. She proceeds to tell me I acute lymphoblastic leukemia (ALL) which is considered the children's leukemia. Honestly, what I do remember of this conversation was she specialized in treating it in children and moved to adults to improve the success rate, and that I am now OLD. Seriously if I heard if I was 4 instead of 44 again, I was gonna deck her or at least order my walker. It looks like the only options for me are chemo followed by a bone marrow transplant. AND....kaboom (this is the bomb dropping).....I could be in the hospital 6 to 8 weeks this time and was looking at about the same amount of time for the transplant with about a year of recovery. Yes....I cried. I think this is when we really started to believe what was going on.
Now I promised to tell you about the MRI, so here it goes. How many of you watch House (me. me. me) When they show the people having MRIs on the brain in the show they are laying on a flat board and partially in the machine. Right? Well this is true to some degree; however, what they don't show you is they imobilize your head, which isn't too bad, but then they proceed to snap on what appears to be a goalie mask. Seriously, I didn't dare open my eyes. Even with the Valium I think I started to hyperventilate. It took every ounce of will power, and relaxation to keep me there. I felt like Hannibal Lecter "Hello Clarice".
Between having x-rays. lumbar punctures and a MRI (which I will tell ya about later) I meet Doctor Asch. She is spitfire and part of the team of 5 doctors that are 'leukemia gurus'. She proceeds to tell me I acute lymphoblastic leukemia (ALL) which is considered the children's leukemia. Honestly, what I do remember of this conversation was she specialized in treating it in children and moved to adults to improve the success rate, and that I am now OLD. Seriously if I heard if I was 4 instead of 44 again, I was gonna deck her or at least order my walker. It looks like the only options for me are chemo followed by a bone marrow transplant. AND....kaboom (this is the bomb dropping).....I could be in the hospital 6 to 8 weeks this time and was looking at about the same amount of time for the transplant with about a year of recovery. Yes....I cried. I think this is when we really started to believe what was going on.
Now I promised to tell you about the MRI, so here it goes. How many of you watch House (me. me. me) When they show the people having MRIs on the brain in the show they are laying on a flat board and partially in the machine. Right? Well this is true to some degree; however, what they don't show you is they imobilize your head, which isn't too bad, but then they proceed to snap on what appears to be a goalie mask. Seriously, I didn't dare open my eyes. Even with the Valium I think I started to hyperventilate. It took every ounce of will power, and relaxation to keep me there. I felt like Hannibal Lecter "Hello Clarice".
Wednesday, January 12, 2011
Diagnosed
December 23, 2010 - Day One
I didn't sleep all night and I don't feel well. The Dr. yesterday gave me tramidal (I guess that is how you spell it I called it damn it all) to help with the pain of my herneated disc in my back and it kept my mind racing all night. I am supposed to go to physical therepy today at 7, but I don't feel I can do it. Here, I face a dilemma. I can't find the card to the physical therapist, do I just not show up or do I get my butt out of bed and run over and tell her? I decide that I need to let her know so I head to Riverton Hospital and make my way to the fourth floor. After exiting the elevator, I swing by the bathroom and throw up, o.k. I warned I didn't feel too well, and I reschedule my appointment and head home.
The Dr. office called around 8:30 to say that my platelet were 4 and the Dr. wanted me to go the hospital and get platelets. 4? I think I actually chuckled a little. I call Jason on my way to the hospital and he meets me there. The hospital decides to run their own blood work and find that my platelet count is 5, not 4. Wow, an improvement. To give you an idea....a healthy person has between 150,000 to 400,000 platelets. I had 5,000. They also asked if my Dr. had mentioned that my red blood cells were low. Umm, no. I think it was about that point that they told me I would have to stay in the hospital. But, really. It can't be that serious, can it? What became an issue at that point was what hospital to send me to. The insurance company was closed and they didn't know what, if any, restrictions I had. I think I waited in the E.R. for about 3 hours while we worked to get this figured out. When I was finally able to tell him there were no restrictions, he said "Good, because you need to go to LDS. You have leukemia."
Leukemia????? Seriously, at this point my mind did not register that this was cancer or life threatening. Leukemia was just a word to me, I was fine.
Maybe I should have had an idea how big of deal this was when I arrived at the hospital and several people said "You must be Jenny" and they had my room ready for me. Or when they installed a pic line. Or even when they took a core of bone marrow. But I must have been in denial. I thought I would only be in the hospital 4 or 5 days, which sucked because I would miss Christmas.
I didn't sleep all night and I don't feel well. The Dr. yesterday gave me tramidal (I guess that is how you spell it I called it damn it all) to help with the pain of my herneated disc in my back and it kept my mind racing all night. I am supposed to go to physical therepy today at 7, but I don't feel I can do it. Here, I face a dilemma. I can't find the card to the physical therapist, do I just not show up or do I get my butt out of bed and run over and tell her? I decide that I need to let her know so I head to Riverton Hospital and make my way to the fourth floor. After exiting the elevator, I swing by the bathroom and throw up, o.k. I warned I didn't feel too well, and I reschedule my appointment and head home.
The Dr. office called around 8:30 to say that my platelet were 4 and the Dr. wanted me to go the hospital and get platelets. 4? I think I actually chuckled a little. I call Jason on my way to the hospital and he meets me there. The hospital decides to run their own blood work and find that my platelet count is 5, not 4. Wow, an improvement. To give you an idea....a healthy person has between 150,000 to 400,000 platelets. I had 5,000. They also asked if my Dr. had mentioned that my red blood cells were low. Umm, no. I think it was about that point that they told me I would have to stay in the hospital. But, really. It can't be that serious, can it? What became an issue at that point was what hospital to send me to. The insurance company was closed and they didn't know what, if any, restrictions I had. I think I waited in the E.R. for about 3 hours while we worked to get this figured out. When I was finally able to tell him there were no restrictions, he said "Good, because you need to go to LDS. You have leukemia."
Leukemia????? Seriously, at this point my mind did not register that this was cancer or life threatening. Leukemia was just a word to me, I was fine.
Maybe I should have had an idea how big of deal this was when I arrived at the hospital and several people said "You must be Jenny" and they had my room ready for me. Or when they installed a pic line. Or even when they took a core of bone marrow. But I must have been in denial. I thought I would only be in the hospital 4 or 5 days, which sucked because I would miss Christmas.
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