Yes, I know I haven't put anything on here in a long time. Sorry, for a while there I just didn't want anything to do with the computer.
So here is the scoop. Transplant went great. Janice was awesome!!!!! For about two days after I was completely exhausted and didn't even want to talk to anyone on the phone, let alone turn on the computer. I didn't feel sick, but didn't feel great either. I am pretty sure this was the radiation catching up with me.
Even after that, I was pretty tired most of the day.
I was considered engrafted n March 30 after three days of my neutrophils being over 500. They are actually around 2500 now. This normally means I could have gone home, but no! I had to get acute graft vs host (GVH) disease. In my case, it has taken the form of diarrhea. I guess I shouldn't complain. So far, it has not affected my liver, or kidneys or any other vital organs. A mild case of GVH is good as it should also help with killing any remaining leukemia that was in my body. But there were several days there where I couldn't even leave my room because I couldn't go far from the bathroom. YES, I am truly a prisoner.
So what this means is they are giving me steroids to help stop the problem and get the marrow under control AND, I haven't not been allowed to eat or drink anything for about 6 days. My taste buds recovered about 2 days after this and I have been craving food like crazy. Especially nachos and smothered burritos. Do you know how many cooking shows and food commercials there are out there? And even during regular shows, they sure eat or drink alot.
Sunday, April 3, 2011
Sunday, March 13, 2011
Almost There T minus 3 days
One more round of chemo and then I have a day of rest before transplant. I am scared about how sick it will make me. There are so many unknowns. All I can hope for is that they can control the marrow and that the leukemia will never come back. It will all be worth it if that happens. It was so hard to go from feeling perfectly normal on Sunday, to tired with messed up taste buds. I am sure it will get worse before it gets better. I really am scared and ask everyone to pray for me. I am sure it will all go well, but you know how it is, you mind always thinks about the worst possibilities.
The doctors did let me go outside today. It felt soooo nice. I can't wait until I am able to go home. It is just more comfortable and restful there. YUP even with the dogs.
The doctors did let me go outside today. It felt soooo nice. I can't wait until I am able to go home. It is just more comfortable and restful there. YUP even with the dogs.
Thursday, March 10, 2011
Radiation - Day 4 T minus 6 to transplant
The radiation is starting to get to me. My stomache feels acidic and really doesn't want to eat, so I have to find the simplest foods I can. Today was the LONGEST session ever. The machine kept over heating so instread of taking an hour, it took two. I kept feeling like I had bile in the back of my throat but kept telling myself to keep it down, I can make it. The only reward was that Jason was in my room when I got back and we curled up on my bed and took a nap, It is sooo hard feeling sick after feeling so great and unfortunately it is only going to get worse. But I can do it!!!
Check out the pics below....and you thought torchure was a thing of the past
Check out the pics below....and you thought torchure was a thing of the past
Tuesday, March 8, 2011
Let the Torture Begin - Day minus 8
O.k I am going to have to post pictures on here of the how they strap you in for radiation treatment. Everyone thought torture was a thing of the past, but if you saw the devices they use in the dungeon here, you would believe again. I had my first of seven rounds yesterday. I wish it was round seven. I really can't describe the event without pictures.The good news was it didn't make me sick, the bad news was my face is swollen. My lymphnoids and checks and around my eyes are very puffy. It looks beautimus.
It is really hard to be back in the hospital. I just want to be done and go home! The staff here is fabulous, but it is soooo boring and I miss my family and my pets. Today is day minus 8 with 0 being transplant day. Hopefully soon, I am on the other side of this.
It is really hard to be back in the hospital. I just want to be done and go home! The staff here is fabulous, but it is soooo boring and I miss my family and my pets. Today is day minus 8 with 0 being transplant day. Hopefully soon, I am on the other side of this.
Tuesday, March 1, 2011
Ugh.
I was looking at the pictures posted below. It is amazing how carefree and simple our life was not that long ago. Man...I even miss my hair, even though it was a pain to get ready in the morning. And did you notice how tan I look? I can't wait until I am all done with this. We are going to take another cruise to celebrate. You are all invited...each and every one of you.
On another note:
My friend Kelly owns a boutique http://roknroyalty.web.officelive.com/default.aspx she is offering to donate a portion of the sale to me if you mention my name. She has really cute designer jeans, shirts, jewelry etc. and my teenage girls LOVE her store. If you are interested, she is located at 13269 S 1460 W.
Oh....one more thing. Only 5 1/2 days of freedom left.
On another note:
My friend Kelly owns a boutique http://roknroyalty.web.officelive.com/default.aspx she is offering to donate a portion of the sale to me if you mention my name. She has really cute designer jeans, shirts, jewelry etc. and my teenage girls LOVE her store. If you are interested, she is located at 13269 S 1460 W.
Oh....one more thing. Only 5 1/2 days of freedom left.
Wednesday, February 23, 2011
Back to work
I went back to work on last Monday. I don't know why I wanted to go back, other than I like the people I work with and I miss my job, but it is just delaying the inevitable. PLUS, it was getting expensive for me to be at home. I kept finding projects that I wanted to do around the house and none of them were cheap. Going back for three weeks will not help me keep my job after transplant. I will be out too long. :( It was hard sharing my desk, computer, etc with the temp. It feels like and invasion of personal space and, even though she is very nice, it is hard not to resent her being here.
I found out Wednesday I am going to transplant on March 7. Even though this is what I have been waiting for, I am terrified. Jason and I met with Dr. Koneca and she mapped out the possible problem that I may encounter including severe gut problems from diarrhea to mouth sores, to being unable to eat and drink for weeks. This is all related to the marrow vs host disease. However, the marrow vs host disease can kill any remaining leukemia. So here is what I am hoping for: there is what they call marrow vs leukemia which is a mild form of the above disease. I what just enough for the marrow to be affective in fighting this crap, but not enough to make me very ill. Is that asking too much? Naw, I don't think so.
I found out Wednesday I am going to transplant on March 7. Even though this is what I have been waiting for, I am terrified. Jason and I met with Dr. Koneca and she mapped out the possible problem that I may encounter including severe gut problems from diarrhea to mouth sores, to being unable to eat and drink for weeks. This is all related to the marrow vs host disease. However, the marrow vs host disease can kill any remaining leukemia. So here is what I am hoping for: there is what they call marrow vs leukemia which is a mild form of the above disease. I what just enough for the marrow to be affective in fighting this crap, but not enough to make me very ill. Is that asking too much? Naw, I don't think so.
Friday, February 11, 2011
Biopsies, biopsies, biopsies
I went in Wednesday for my marrow biopsy. Boy, was that fun....NOT. Peter, the PA that did my biopsy was having serious issues. The first attempt he figured he was on the outside of the bone and would have to re-adjust the needle. After numbing me some more, he tried again. Did you know that the T-handled needle to do biopsies looks like the nails you find at the hardware store with the blue plastic at the head. They are even the same color. I wonder if the hospital buys them from Home Depot for about $.95 each and charges me around $150 for them. Anyway, the marrow he retrieved from the second attempt "did not look right" he thinks he was still hitting the side of the bone and not the middle. Soooo, there was a third attempt with a little more numbing. Jackpot! The procedure that usually takes about 10 minutes took close to 1/2 hour. And man was my left butt sore. I did get to see the marrow as they put it on the slides. It is not very impressive. It just looks like solid blood. Now spinal fluid...that stuff is cool! The second time I had the LP, the nurse asked if I wanted to see the fluid. I thought, "not really." But she showed it to me and it was clear. Amazing. Apparently tears, saliva and spinal fluid are the only clear fluids in the body. Learn something new everyday.
Update on Kim: her first biopsy did not identify any cancer. I thought this would be good, but the surgeon said he wanted to go in again and take a portion of the mass that is in her stomache instead of the lymphnoid he took. Apparently, this mass is full of blood vessels and he said that she should should hope it turns out to be lymphoma because it would be easily treated with chemo to shrink and remove the mass. He says that otherwise, removal of the mass would cause massive hemoraging and could kill her. Nice. Never thought I would start praying for someone to have cancer.
Update on Kim: her first biopsy did not identify any cancer. I thought this would be good, but the surgeon said he wanted to go in again and take a portion of the mass that is in her stomache instead of the lymphnoid he took. Apparently, this mass is full of blood vessels and he said that she should should hope it turns out to be lymphoma because it would be easily treated with chemo to shrink and remove the mass. He says that otherwise, removal of the mass would cause massive hemoraging and could kill her. Nice. Never thought I would start praying for someone to have cancer.
Monday, February 7, 2011
Keeping up with the Nortons
Jason and I have some friends that we do everything with. They are our vacation buddies and our some of our closest friends. Weather it is Lake Powell, the sand dunes, DisneyWorld, or cruising the Caribbean, they are the people we do everything with. We have a big joke between us that they are trying to keep up with the Nortons whenever we buy something new (we say it is keeping up with the Burgons). For example, when we bought our cabin cruiser, Kim and Lynn got one too. When we bought our toyhauler, they turned their old one in and bought a new one. You get the idea.
Yesterday, Kim called me. She was at Jordan Valley Emergency and they had diagnosed her with Lymphoma. I was in SHOCK!!! Jason said I grabbed his hand and squeezed his fingers (apparently really hard too) I don't remember this. All I know is I had to go see her. I knew what she was going through and I had to be there for her. I am glad we went. We were able to make her laugh. Especially when I told her, "Kim, this is one time you were NOT supposed to keep up with the Nortons!"
We are waiting for the results of her biopsy. I am praying that is is NHL (not the National Hockey League) and she will be in remission soon!
Yesterday, Kim called me. She was at Jordan Valley Emergency and they had diagnosed her with Lymphoma. I was in SHOCK!!! Jason said I grabbed his hand and squeezed his fingers (apparently really hard too) I don't remember this. All I know is I had to go see her. I knew what she was going through and I had to be there for her. I am glad we went. We were able to make her laugh. Especially when I told her, "Kim, this is one time you were NOT supposed to keep up with the Nortons!"
We are waiting for the results of her biopsy. I am praying that is is NHL (not the National Hockey League) and she will be in remission soon!
Friday, February 4, 2011
A Full Week of Freedom
Counts are climbing!!!! I do not have to go back for lab work until Wednesday the 9th. I can't even begin to tell you how liberating and boring this is. They haven't released me to work (I asked but they never answered) so I am pretty much home all day trying to keep myself busy. I don't have to stay home, but all I would do is go spend money. I have found several projects I can do including: touch up paint work, striping wallpaper and repainting Bay's room, installing new light fixtures, repainting the laundry and bath, refinishing the oak railing, touching up and refinishing wood furniture But doing all these could get expensive! I did buy some fixtures for my bathroom, but of course nothing ever works out. I got one light hung and went to put up the other one, but the stupid light box is off-set and the type of lights I bought have to be mounted directly on the box. Looking forward to hanging with my sister-neighbors this weekend.
I started my application for SS disability and long term disability with my work. Disabled, I don't feel disabled. I mentioned this to the transplant coordinator and she said it was good that I take care of these things while I am feeling well. O.k. Now she has me scared. I don't like the idea of being too sick to do anything or even take care of myself. Ugh! I just wish everything was over with.
I started my application for SS disability and long term disability with my work. Disabled, I don't feel disabled. I mentioned this to the transplant coordinator and she said it was good that I take care of these things while I am feeling well. O.k. Now she has me scared. I don't like the idea of being too sick to do anything or even take care of myself. Ugh! I just wish everything was over with.
Sunday, January 30, 2011
A Special Thanks
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.
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.
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.
Subscribe to:
Posts (Atom)