Well, I'm going to go out on a limb here and make a very obvious statement: I am not tolerating chemo very well!! Duh!
My visit with the doctor brought more fears and questions and a lot less answers than I had hoped for. Nothing surprises me much anymore, so it is all just par for my course...I guess!
First, my counts last week apparently were only 2.1 and NOT 2.9. Hmmm! The ears are a magical piece of equipment, aren't they? I am up a whole .3 for a whopping 2.4! He has confirmed this is not a good count and he had expected to see me back in normal counts with the neupogen and a week off of chemo. Honestly, I am not at all sure what to make of it other than I need to continue to be very careful. Germ free!
That brings me to my second point, my urine culture results. The doc says I DO have a urinary tract infection. He read to me all of the "junk" wrong with it but it means nothing to me. It sure was a long list. Interestingly, the culture did not "grow" but the doc says sometimes things go wrong with the culture. He says it's a urinary tract infection. He changed my antibiotics because I should have responded better than I have on the Cipro. I am guessing they want to get control of the source of the infection before it becomes a real problem, especially with low white blood cell counts. We don't need anymore problems, do we??
Next up for me, a CT of the pelvis, abdomen and chest. It isn't emergent but he wants it done ASAP. So, we will work on getting that scheduled. No chemo this week. My next appointment is scheduled for Thursday of next week to give time for the CT scan and reports to follow. He expressed the need for a "Plan B". I am sure he will have that figured out once Thursday rolls around.
Tuesday, January 26, 2010
Saturday, January 23, 2010
More Complications
This week has not been a good one! I never really bounced back from my treatment last week. I have been very tired and just had a general but overwhelming feeling...of feeling like crap. I can't really put specifics to truly describe what is wrong. I just knew someting wasn't quite right.
My visit this week wasn't until Thursday because of scheduling conflicts with the chemo nurse. I first had my appointment with the doctor. One look at me and it was evident that I wasn't feeling well. We talked a lot and watched him stare at his computer...a lot!
My blood counts came up a bit more...good news. I am still not in the normal range but he said "you will never be normal!" His attempt at humor. They have low expectations for me, I guess. But my numbers improved and I still haven't gotten sick from having few white blood cells. That is one for the very lonely "positive" column. I still need to be extremely careful.
My liver...what do I say about this?!?!? It seems that my liver isn't cooperating either. My weekly blood tests reveal that something isn't quite right with my liver. This could be the reason I feel so badly. I am having pain on my right side, just below the ribs. Hmmm! Chemo nurse said I should have mentioned this to the doc. I can't keep all of my ailments straight. There are so many and I try really, really hard not to be that patient who complains about EVERYTHING. Apparently, this could have been useful info.
The plan...I had to go back to the lab for a urine culture, to rule out a urinary tract infection. I know I don't have one. I don't have any of the symptoms. I have never had one but I understand the symptoms...and I don't have them! But I did what he asked and went to the lab. I am on antibiotics in case there is an infection because Idont' have the immune system to fight it.
If I don't improve and depending on more blood tests on Monday, I may have another scan or ultrasound to check for stones (gallstones?). I am now piecing all of the clues together (Karen, I do have pain in the back where you described! It's just not constant and I forgot about it until it starting hurting again!!!) and this could possibly be gall stones! Good heaven's...really!!! What on EARTH is going on with me!!!
So, no chemo, more tests, back on Tuesday. This is the plan for now other than just resting which is all I have the energy to do. My hubby and kiddies are hanging on as best they can. It kills me that my kids have to see me in bed, looking awful and I can't get up to do anything. This isn't their mother...they aren't used to seeing this, no one should. I would almost have been better for me to do high dose in the hospital because they wouldn't have had to witness all of this scary stuff. And my hubby..he IS a good man! He has picked up all the slack. I feel so guilty. He has been there to pick up where I left off. Even with all the crap from outside sources, he is being tugged in every direction, he comes home and takes care of his family. Not every man is up for that task! He leaves it at the door and comes home to his family that isn't quite right, right now. It is times like this that you see what people are really made of...my husband is a good man :-) Told you it was a bad week! It has been full of struggles...
Oh and those dreaded mouth sores I have been so desperately trying to avoid...got one! I didn't call the doctor because I have been expecting them to rear their ugly heads. Doc wasn't too pleased that I didn't call him. Seems it could turn in to a life threatening infection....especially since I don't have much of an immune system. Hmm, lesson learned! So much to learn when they are pumping poison through your veins!!
Amazing, amazing folks have pulled together some great meals this week! Thank you to the Milton's, Simmons, Bartholomew's, Loya's, Carew's and Rogers! No amount of words can ever express to you our gratitude not ony for your meals but your amazing friendship. You have all picked up the phone and checked in on us. You constantly remind us of just how much you care about our family. Thank you!
My visit this week wasn't until Thursday because of scheduling conflicts with the chemo nurse. I first had my appointment with the doctor. One look at me and it was evident that I wasn't feeling well. We talked a lot and watched him stare at his computer...a lot!
My blood counts came up a bit more...good news. I am still not in the normal range but he said "you will never be normal!" His attempt at humor. They have low expectations for me, I guess. But my numbers improved and I still haven't gotten sick from having few white blood cells. That is one for the very lonely "positive" column. I still need to be extremely careful.
My liver...what do I say about this?!?!? It seems that my liver isn't cooperating either. My weekly blood tests reveal that something isn't quite right with my liver. This could be the reason I feel so badly. I am having pain on my right side, just below the ribs. Hmmm! Chemo nurse said I should have mentioned this to the doc. I can't keep all of my ailments straight. There are so many and I try really, really hard not to be that patient who complains about EVERYTHING. Apparently, this could have been useful info.
The plan...I had to go back to the lab for a urine culture, to rule out a urinary tract infection. I know I don't have one. I don't have any of the symptoms. I have never had one but I understand the symptoms...and I don't have them! But I did what he asked and went to the lab. I am on antibiotics in case there is an infection because Idont' have the immune system to fight it.
If I don't improve and depending on more blood tests on Monday, I may have another scan or ultrasound to check for stones (gallstones?). I am now piecing all of the clues together (Karen, I do have pain in the back where you described! It's just not constant and I forgot about it until it starting hurting again!!!) and this could possibly be gall stones! Good heaven's...really!!! What on EARTH is going on with me!!!
So, no chemo, more tests, back on Tuesday. This is the plan for now other than just resting which is all I have the energy to do. My hubby and kiddies are hanging on as best they can. It kills me that my kids have to see me in bed, looking awful and I can't get up to do anything. This isn't their mother...they aren't used to seeing this, no one should. I would almost have been better for me to do high dose in the hospital because they wouldn't have had to witness all of this scary stuff. And my hubby..he IS a good man! He has picked up all the slack. I feel so guilty. He has been there to pick up where I left off. Even with all the crap from outside sources, he is being tugged in every direction, he comes home and takes care of his family. Not every man is up for that task! He leaves it at the door and comes home to his family that isn't quite right, right now. It is times like this that you see what people are really made of...my husband is a good man :-) Told you it was a bad week! It has been full of struggles...
Oh and those dreaded mouth sores I have been so desperately trying to avoid...got one! I didn't call the doctor because I have been expecting them to rear their ugly heads. Doc wasn't too pleased that I didn't call him. Seems it could turn in to a life threatening infection....especially since I don't have much of an immune system. Hmm, lesson learned! So much to learn when they are pumping poison through your veins!!
Amazing, amazing folks have pulled together some great meals this week! Thank you to the Milton's, Simmons, Bartholomew's, Loya's, Carew's and Rogers! No amount of words can ever express to you our gratitude not ony for your meals but your amazing friendship. You have all picked up the phone and checked in on us. You constantly remind us of just how much you care about our family. Thank you!
Wednesday, January 13, 2010
More of the Same
It is getting really old to post the same ole garbage! I know you want updates so here is the update for this week.
Good new first! I have fulfilled the maximum co-pay for "self injectibles" which accounts for the high co-pay last week. My doctor re-submitted my prescription for 12 shots a month and the co-pay was only $100 for the month. Still seems high, I know but last week I was given the impression my co-pay would be $300 for the week! That would be close to $16,000 for the year. My head was definitely spinning last week and stopped it's rotation yesterday :-)
Not so great news...my counts improved with the shots but only slightly. They went from 1.6 (and that was after a 2 week break and the shots) to 2.2. Normal levels are more than twice that and that is for the very low, within normal. I got chemo anyway...we will have to wait and see what happens next week.
My one vein that was my old faithful and protested and I worry that I won't be able to do IV's for the whole year. I am a bit bruised and have track marks now :( sad! I immediately got sick this time around. I am not feeling great but trying to work through it. The good news is that nothing is a surprise and while I feel miserable it is somehow a little easier knowing that it has been "more of the same." The goal for the week is to regain my energy, stay healthy and produce those darn blood cells! Grow BABY Grow!
Incredible meals for the week have come from the loving hearts of the Van de Brooke, Rogers, and Kirby families. Thank you all so very much!
Good new first! I have fulfilled the maximum co-pay for "self injectibles" which accounts for the high co-pay last week. My doctor re-submitted my prescription for 12 shots a month and the co-pay was only $100 for the month. Still seems high, I know but last week I was given the impression my co-pay would be $300 for the week! That would be close to $16,000 for the year. My head was definitely spinning last week and stopped it's rotation yesterday :-)
Not so great news...my counts improved with the shots but only slightly. They went from 1.6 (and that was after a 2 week break and the shots) to 2.2. Normal levels are more than twice that and that is for the very low, within normal. I got chemo anyway...we will have to wait and see what happens next week.
My one vein that was my old faithful and protested and I worry that I won't be able to do IV's for the whole year. I am a bit bruised and have track marks now :( sad! I immediately got sick this time around. I am not feeling great but trying to work through it. The good news is that nothing is a surprise and while I feel miserable it is somehow a little easier knowing that it has been "more of the same." The goal for the week is to regain my energy, stay healthy and produce those darn blood cells! Grow BABY Grow!
Incredible meals for the week have come from the loving hearts of the Van de Brooke, Rogers, and Kirby families. Thank you all so very much!
Wednesday, January 6, 2010
Back on the Saddle
My counts all improved, thanks to the Neupogen. That is the good news! The bad news is that I have added more things to my "normal!" And this medication is expensive! My co-payment for my 3 shots this week was $300 but the pharmacy cost was $2000! I'll give you a moment to do the math! At this point what am I going to say, no thanks?!?!? I kind of need this medication, ya know?! AMAZING! I will highly encourage each of the kids to go into pharmaceuticals!
So far I am feeling okay. I am taking the Zofran for nausea. My tongue is fried but that always happens before I even get home! I am tired and feel like I have the flu. I don't feel great but I have felt much worse in the past!
I get a kick out of some of the other patients and sadly, I am a member of their club. Neat folks, crappy situation but we have each other to bounce our experiences and troubles off of. I never thought I would need that but truthfully, few folks understand what it's like to be a chemo patient. Many try but you can't truly understand all of the nuances unless you live them.
The Milton's, Herrera's and LaRue's have been our meals on wheels to get us through this round. Love you guys! You have made this horrible ordeal a bit easier...
So far I am feeling okay. I am taking the Zofran for nausea. My tongue is fried but that always happens before I even get home! I am tired and feel like I have the flu. I don't feel great but I have felt much worse in the past!
I get a kick out of some of the other patients and sadly, I am a member of their club. Neat folks, crappy situation but we have each other to bounce our experiences and troubles off of. I never thought I would need that but truthfully, few folks understand what it's like to be a chemo patient. Many try but you can't truly understand all of the nuances unless you live them.
The Milton's, Herrera's and LaRue's have been our meals on wheels to get us through this round. Love you guys! You have made this horrible ordeal a bit easier...
Wednesday, December 30, 2009
No Go...Again!
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!!
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!!
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!
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