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...
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