After 1 1/2 hours of waiting in the waiting room I got the news I was secretly hoping for...I know that is bad! My counts did not improve from last week and it was not safe to do resume treatments yet. It took a while but I feel SO much better and I didn't want stinky chemo to ruin it for me!
The bad news is...because my body is not recovering on it's own, I need medical intervention...those dreaded shots I was talking about! So the nurse was willing to "teach" me to do it yesterday but my brain just needed a little time..well a lot of time! So she gave me my first one on Tuesday. That leaves one for Wednesday and one for Thursday.
If this works getting my counts back to an acceptable level, then this will be my routine. Chemo on Tuesday, shots of Neupogen on Wednesday, Thursday and Friday. Rest up on the week end and blood work Monday (to check my counts) and back to chemo on Tuesday...
The Neupogen is not without its own set of side effects. When described to me, I am not going to lie, it scared me! The nurse explained that the Neupogen encourages cell development (whatever my body is lacking, red blood cells, white blood cells, platelets..all of which of mine are low) in the bone marrow. As a result the large, flat bones where an adult's bone marrow is produced will become "swollen" with (hopefully) a multitude of cells. These include the pelvis and sternum (chest) and the bones will hurt. "You may feel like you are having a heart attack but it is just the Neupogen" That was not nice to hear. She immediately gave me Tylenol and said to continue taking it every 4 hours...don't let the hurt start. I am a faithful complier so I did exactly as I was told!
The other side effects are flu-like symptoms which alone are okay but the fever really confused me. If I am supposed to go to the ER if my fever elevates beyond 100.4 and this Neupogen may cause fever....how am I supposed to know if it is a product of the medication or a real infection. See my grief!? And since they say that a minor infection can be life threatening due to my counts, what am I supposed to do if a fever should occur??? I am not a dumb human being but I just couldn't get what they were telling me! I still don't fully understand it all. I understand why the fever occurs with the Neupogen, she did a great job explaining that. It all has to do with the amount of white blood cells, which causes fever (correct verbage?? you get the gest) as your body's reaction to that count, blah, blah, blah. The white blood cell count will be elevated because that is the goal of the Neupogen. The body's natural reaction to an elevated count is fever...makes sense.
So back to my point...how would you know if the fever is a product of the Neupogen or a life threatening infection? And let's be honest that is the only question I REALLY want the answer to!! It seems there isn't really a clear answer so our plan of action is to call the doctor. We will let all of his wisdom have a turn in this conundrum!
Now that I haven't had chemo in 2 weeks, I feel great! My muscle and bones ache from the shot and I am really tired but no nausea. That can be a side effect from the shot but so far so good. I am able to be with the kids, although we have stayed home because of the risk of infection but I feel good. Which is a gift! My friends have been amazing. Carey has brought dinner every Monday night and while this has been difficult for me to accept that I cannot take care of my family, my amazing friends have helped me with that. Thank you for that incredible gift! You are pulling me through this and I am so very grateful!!!
You all amaze me with your generousity!!
Wednesday, December 30, 2009
Tuesday, December 22, 2009
No Go!
My blood work is in and my counts are too low. No chemo this week. I am feeling terrible.
Merry Christmas
Merry Christmas
Saturday, December 19, 2009
Ugh!
Round 2 wasn't any easier...it was more difficult!
My appointment started with an appointment with the doctor. He took a bunch of notes and looked at me...I knew what was coming, I had looked at my lab paper on his desk while he was writing and I could see my lab values were not in the normal columns. Sure enough, my white blood cell counts are down. My hemoglobin, and platelets are down as well. As far as the white blood cell counts go, it could be dangerous and if they fall any lower I will have to do shots at home to increase their production. Wow! Sounds like an adventure! He explained that they were simple shots that Scott could do...ha ha! Any of you who know Scott, know that shots aren't something he can even look at, let alone give! He was gripping his chair and grimacing just at the thought that I would need these suckers...he can't be the one to give them to me....it will never happen.
So my doctor suggested a friend, possibly a friend who is a nurse...Maricris are you reading this??? Karen???? So I am starting a sign up list (just kidding) for shot givers! Initially I thought I would be able to give it to myself but after thinking about it, I may need some time to get acquainted with the idea. Unfortunately, I may not have "time." I do my blood work Monday, get the results Tuesday...
As for the platelets and hemoglobin, they require blood transfusions. Hmmm! This is just exciting all around the corner, isn't it?!?!? I'm O+ if anyone has a burning desire to bank blood for me. Right now a blood transfusion seems like the least of my worries. Am I wrong to have that attitude???
The WBC (white blood cell) count is the dangerous one. I can get a "life threatening" infection so I need to be careful. I am trying to stay out of crowded public places and snot nosed little kids (and that includes my own!) Makes it difficult when folks send their sick kids to school and my kids bring the nasty germs home. My kids have had a crash course of germ "etiquette." It will keep me out of the hospital and they understand those terms.
This round was bad. On Tuesday, treatment day, I felt okay. I wasn't really sick like last time. I came home, rested and waited for the assault to occur. Wednesday, Thursday, Friday, were bad. It is like having the worst flu in your life. No vomiting but just the most uncomfortable, sometimes painful, nausea. Mouth sores have not happened. I think I have figured out how to drown them out so them don't have a chance to develop. I drink tons of water the day of my treatment.
By Friday, I was feeling okay enough to go out. At 3 am I woke up in so much pain and discomfort, I stayed up the rest of the day. Scott tried to give me tea and sat with me while I tried to throw up but nothing really helped. We are still tinkering with remedies and what works and what doesn't work. So far, I am an expert on what doesn't work! We will take it day by day. I will find my little bag of tricks and hopefully it will get better. If my WBC drops to 1000 or under, they will most likely stop treatment until my levels come back to acceptable numbers. He said right now it is a fine line and a judgement call if we continue with the level they are at. He chose to do treatment on Tuesday. I would have to guess that was due to my overall health and age. Here's to being the youngest one in the infusion room!
I did meet a really nice lady this time around. It broke my heart to see her all hooked up and put a story to the body. I really enjoyed talking to her and learning about her and her battle with cancer. She was going in for a blood transfusion a few days after her treatment and she was so inspiring. She was so matter-of-fact, no fear. She is in a battle and it was just par for the course. In my defense, she has had a longer time to get used to the idea of putting poison in your veins. Our chat helped me and really enjoyed talking to her. It helped pass the time for both of us and I almost didn't notice that they put the drugs in the IV straight from the refrigerator!! OUCH!! That hurt!
I return on Tuesday for some more fun! Can't wait! NOT!
My appointment started with an appointment with the doctor. He took a bunch of notes and looked at me...I knew what was coming, I had looked at my lab paper on his desk while he was writing and I could see my lab values were not in the normal columns. Sure enough, my white blood cell counts are down. My hemoglobin, and platelets are down as well. As far as the white blood cell counts go, it could be dangerous and if they fall any lower I will have to do shots at home to increase their production. Wow! Sounds like an adventure! He explained that they were simple shots that Scott could do...ha ha! Any of you who know Scott, know that shots aren't something he can even look at, let alone give! He was gripping his chair and grimacing just at the thought that I would need these suckers...he can't be the one to give them to me....it will never happen.
So my doctor suggested a friend, possibly a friend who is a nurse...Maricris are you reading this??? Karen???? So I am starting a sign up list (just kidding) for shot givers! Initially I thought I would be able to give it to myself but after thinking about it, I may need some time to get acquainted with the idea. Unfortunately, I may not have "time." I do my blood work Monday, get the results Tuesday...
As for the platelets and hemoglobin, they require blood transfusions. Hmmm! This is just exciting all around the corner, isn't it?!?!? I'm O+ if anyone has a burning desire to bank blood for me. Right now a blood transfusion seems like the least of my worries. Am I wrong to have that attitude???
The WBC (white blood cell) count is the dangerous one. I can get a "life threatening" infection so I need to be careful. I am trying to stay out of crowded public places and snot nosed little kids (and that includes my own!) Makes it difficult when folks send their sick kids to school and my kids bring the nasty germs home. My kids have had a crash course of germ "etiquette." It will keep me out of the hospital and they understand those terms.
This round was bad. On Tuesday, treatment day, I felt okay. I wasn't really sick like last time. I came home, rested and waited for the assault to occur. Wednesday, Thursday, Friday, were bad. It is like having the worst flu in your life. No vomiting but just the most uncomfortable, sometimes painful, nausea. Mouth sores have not happened. I think I have figured out how to drown them out so them don't have a chance to develop. I drink tons of water the day of my treatment.
By Friday, I was feeling okay enough to go out. At 3 am I woke up in so much pain and discomfort, I stayed up the rest of the day. Scott tried to give me tea and sat with me while I tried to throw up but nothing really helped. We are still tinkering with remedies and what works and what doesn't work. So far, I am an expert on what doesn't work! We will take it day by day. I will find my little bag of tricks and hopefully it will get better. If my WBC drops to 1000 or under, they will most likely stop treatment until my levels come back to acceptable numbers. He said right now it is a fine line and a judgement call if we continue with the level they are at. He chose to do treatment on Tuesday. I would have to guess that was due to my overall health and age. Here's to being the youngest one in the infusion room!
I did meet a really nice lady this time around. It broke my heart to see her all hooked up and put a story to the body. I really enjoyed talking to her and learning about her and her battle with cancer. She was going in for a blood transfusion a few days after her treatment and she was so inspiring. She was so matter-of-fact, no fear. She is in a battle and it was just par for the course. In my defense, she has had a longer time to get used to the idea of putting poison in your veins. Our chat helped me and really enjoyed talking to her. It helped pass the time for both of us and I almost didn't notice that they put the drugs in the IV straight from the refrigerator!! OUCH!! That hurt!
I return on Tuesday for some more fun! Can't wait! NOT!
Thursday, December 10, 2009
One down...?? More to Go!
Phew! That was a doozy!! For being low dose I sure have felt like crud!
Let's rewind....Scott and I arrived on Tuesday at 11:30 and waited in the waiting room for about an hour..ugh! Maria is the chemo nurse and we love her. She tells us everything and is just really nice. Once we entered the infusion room I was bombarded with fear and anxiety. There were about 7 or 8 patients in there already hooked up to the IVs. Not one of them was younger than 70 years old or so. They were old and frail and sick. How did I end up in a place like this?!?
Before we started anything she asked if I had taken my anti-nausea medication. I had not and I have two different prescriptions so she walked me through the one I should take before treatments. It should last for 12 hours. The other should be taken after the 3rd day.
The nurse set up IV drip with sodium chloride and went to the other room to get the chemo drugs. Once about half the IV bag was gone she injected the methotrexate (bright yellow) into my IV and followed with Vebane (clear). I felt a bit light headed but nothing major. If I wasn't hypersensitive to every sensation, I might have not noticed.
She turned the IV back on to flush the chemo through my system. Once the IV bag was empty I was free to go! It was fairly quick. The IV was uneventful and I was actually kind of hungry. I was afraid the hunger wouldn't last so we picked up a sandwich for the way home.
I was only feeling tired when I got home, so I went to bed. I expected that, the nurse warned me about fatigue, nausea, vomiting, and diarrhea. That was to come later. A few hours later the nausea came. It never resulted in vomiting but it was pretty bad.
Side effects to expect were all present. I have just taken it very slow, listened to my body and tried to pick up and get ready for round number 2. The nurse did have a few things to tell me that I didn't already know...don't eat lettuce or other thin skinned foods that I don't wash thoroughly myself at home (do not eat these foods prepared elsewhere), flush the toilet twice to rid evidence of chemo waste (toxic toilet we call it at home :-), mouth sores WILL happen (and started to already), and lose of appetite.
It's been 2 1/2 days and things are getting better. Life goes on, the kids still have practice, homework and band! Pick up and move on...I expect next week will be worse...Let's hope I am wrong but this is for the birds!!
Let's rewind....Scott and I arrived on Tuesday at 11:30 and waited in the waiting room for about an hour..ugh! Maria is the chemo nurse and we love her. She tells us everything and is just really nice. Once we entered the infusion room I was bombarded with fear and anxiety. There were about 7 or 8 patients in there already hooked up to the IVs. Not one of them was younger than 70 years old or so. They were old and frail and sick. How did I end up in a place like this?!?
Before we started anything she asked if I had taken my anti-nausea medication. I had not and I have two different prescriptions so she walked me through the one I should take before treatments. It should last for 12 hours. The other should be taken after the 3rd day.
The nurse set up IV drip with sodium chloride and went to the other room to get the chemo drugs. Once about half the IV bag was gone she injected the methotrexate (bright yellow) into my IV and followed with Vebane (clear). I felt a bit light headed but nothing major. If I wasn't hypersensitive to every sensation, I might have not noticed.
She turned the IV back on to flush the chemo through my system. Once the IV bag was empty I was free to go! It was fairly quick. The IV was uneventful and I was actually kind of hungry. I was afraid the hunger wouldn't last so we picked up a sandwich for the way home.
I was only feeling tired when I got home, so I went to bed. I expected that, the nurse warned me about fatigue, nausea, vomiting, and diarrhea. That was to come later. A few hours later the nausea came. It never resulted in vomiting but it was pretty bad.
Side effects to expect were all present. I have just taken it very slow, listened to my body and tried to pick up and get ready for round number 2. The nurse did have a few things to tell me that I didn't already know...don't eat lettuce or other thin skinned foods that I don't wash thoroughly myself at home (do not eat these foods prepared elsewhere), flush the toilet twice to rid evidence of chemo waste (toxic toilet we call it at home :-), mouth sores WILL happen (and started to already), and lose of appetite.
It's been 2 1/2 days and things are getting better. Life goes on, the kids still have practice, homework and band! Pick up and move on...I expect next week will be worse...Let's hope I am wrong but this is for the birds!!
Friday, December 4, 2009
Tuesday It Is!
We had our "weekly" visit with Dr. Polansky and Tuesday will be THE day. I will go in for low dose chemo of methotrexate and vinblastine every Tuesday for the next three months. It will be evaluated to see if the tumors are "stable" and the next schedule will be determined. It will either stay the same (weekly) or change to three weeks on..one week off. It is a little sketchy what the schedule will be for sure but for now, it will be weekly for the first three months.
He also went over the side effects which will most likely be nausea and/or vomiting. He prescribed two different anti-nausea drugs and they in turn, also have side effects. Sheesh! So he went over the remedies for those secondary side effects. I should not lose my hair but it has happened in the past. My mane may become thinner if it doesn't fall out. Good times!!
Germs and infection are BAD! My kids and I are going to become germa-phobes (please bear with us). Anything over 100.4 is an immediate trip to the ER to check my white blood cell count and if I look or feel like "crap" (doctors words) they will check for hemoglobin and platelet counts. If they are too low, I will get a blood transfusion. More good times!
He doesn't expect anything too terribly exciting, which is good. I want to be as boring as possible. Text book..nothing exciting at all! These are my lofty goals for 2010. I am feeling good about this. It should be relatively uneventful and I plan to totally use all of the generous offers to help and listen to my body.
Tuesday starts the new and hopefully final battle. I am done with this!
He also went over the side effects which will most likely be nausea and/or vomiting. He prescribed two different anti-nausea drugs and they in turn, also have side effects. Sheesh! So he went over the remedies for those secondary side effects. I should not lose my hair but it has happened in the past. My mane may become thinner if it doesn't fall out. Good times!!
Germs and infection are BAD! My kids and I are going to become germa-phobes (please bear with us). Anything over 100.4 is an immediate trip to the ER to check my white blood cell count and if I look or feel like "crap" (doctors words) they will check for hemoglobin and platelet counts. If they are too low, I will get a blood transfusion. More good times!
He doesn't expect anything too terribly exciting, which is good. I want to be as boring as possible. Text book..nothing exciting at all! These are my lofty goals for 2010. I am feeling good about this. It should be relatively uneventful and I plan to totally use all of the generous offers to help and listen to my body.
Tuesday starts the new and hopefully final battle. I am done with this!
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