Yesterday i biked both to and from georgetown for chemo, and the biggest obstacles were the trees that had fallen on the path in the previous day's storm. Really they were quite impressive. One I could walk around (in the mud, because it covered the whole bikepath.) That's the one that was gone by 4pm when I was on my way back. The other two were so big and blocked so much of the path and surrounding grass that I either had to lift my bike between the trunk and branches (I had help -- it was the heavy bike!) or leave the path and ride in the adjoining parking lot. (That was on the way back -- joan thought of it.)
The nurse was great this time, and the doctor sent up instructions.... i think the instructions said to infuse the cytoxan over 2 hours rather than at a rate of 100 ml/hr, which is closer to 3 -- but the nurse listened to me and set it for 100 ml/hr, thank goodness. I will make sure I get those instructions written clearly next time in case i get a different chemo nurse. The nurse came by at one point and asked if i wanted it sped up -- but i did feel the beginning of symptoms; they just didn't get worse. She suggested i take an ativan (an antinausea med -- I had brought some, thinking i might need some onthe way home.)
I hadn't thought of taking one during the chemo before because the beginning symptoms don't feel like nausea is where they are headed -- but the doctor had mentioned, when i'd described them to her, that that is what they are.
I haven't eaten yet since i got back though. i have this wonderful lunch sitting in the fridge -- really it was last night's wonderful dinner, for the rest of them. I'm going to go have mine!
Friday, June 6, 2008
Sunday, June 1, 2008
doctors & steroids & glaucoma
I guess I've been delinquent in not posting lately. There hasn't been much new, but I guess there is some.
I did finally get that yeast infection taken care of, with an additional 5 day course of diflucan. At least I think it's taken care of... .it's still somewhat itchy, but compared to how it was it's hardly worth mentioning. My primary care doctor called me at home to check on me -- so I was able to tell her that my oncologist wants her to be in charge of managing side effects of chemo, and she said okay -- that was nice to get clarified.
Then my oncologist called me at home, a few days later! That was really neat, because she's been hard to catch. She was great about both my need for her to write instructions on the slower infusion and the plan for the taxol (next chemo, starting in mid July.) The taxol will be complicated because I will need to use a steroid in order to tolerate it in its alcohol base. I had hoped to use abraxane instead, which is the same medication in an albumin base -- which would eliminate the need for steroids. However, it has only been tested on metastatic breast cancer (stage 4.)
The medical oncologist we saw at the Mayo thought it was a no brainer that abraxane would work fine, since it's the same medication as taxol, just in a different base -- but my oncologist at Georgetown is not so comfortable with it. She says there have been too many times when a medication that was sure to work just as well didn't, and she doesn't want to risk it.
The issue with steroids is that they increase intraocular pressure (IOP.) I have glaucoma, and I have just enough damage that I have lost the buffer... the overlapping vision that both eyes see.
Close one eye and look at the nose of a person accross the table from you. Then close the other eye. YOu see how you can see their whole face either way, plus a lot of background? All the stuff you can see with each eye is what I'm referring to as "overlapping vision" -- or the "buffer." And BTW when I do that eye thing I'm describing to you, with my right eye, I generally can't see the upper left hand corner of the person's face -- left from MY point of view, their upper right corner.)
This is why I'm so serious about avoiding steroids...... I have lost just about all the vision I can lose while still being able to maintain my field of vision (with both eyes open :-) So, while I want the chemo to have the best chance it can of killing all the cancer cells it can, if this can be managed without causing any further damage to my vision, I would really prefer that. But who knows? And I really want all the cancer cells GONE! Then once they are dead, the surgeon can remove them too. Dead and deader -- the cancer, not me.
Anyway it will be a process. I have been in touch with my Boston ophthalmologist (one of the world's best doctors) and will see my local ophthalmologist on Tuesday. (He's good too, and will work with my BOston doctor on it, and my oncologist.) I think what will happen is, I will start the taxol and take decadron (the steroid in question) and have my IOP (intraocular pressure) measured and see if I can continue it or whether I need to switch to abraxane..... However, I would like to plan ahead on what to do for my eyes if my pressure goes up (it won't drop immediately upon stopping the steroid.) In fact what i'd really like to do is do some of that ahead of time, preventively.
For example -- maybe I should go to Boston for another eye surgery. (The last one was in 1999, and only in one eye, which should be less susceptible to the effects of the decadron because of it.) Haven't discussed this with Dr Mx yet (Boston MD) or Dr W (local eye dr.) OR Dr. L (oncologist.) So for the moment that's TBD.
So this week I have an eye appt on Tuesday and an oncologist and chemo appt on Thursday. I doubt I will need to go back for neulasta on Friday, though. My white count was UP as of last Friday. I'm actually a little concerned about it because it was over the top of the range.... (12.3 -- the range being 3.6-9.6.) Maybe all that water I drank at the last chemo infusion washed the chemo away before it could work!? I haven't lost my head stubble yet -- if that's any indication. I don't have to shave my armpits anymore, though, and those chin hairs I used to pluck have stopped coming back. (Finally some good side effects!)
Maybe I'm just really sensitive to medication, and the one neulasta shot was so effective for me that the white count kept going up even during that week when my white count is supposed to drop? The only other idea I have is that fighting the yeast infection made it go up. I don't think I have any other infections going on..... you would think I'd notice an infection in my body -- but I didn't notice the cancer.....
The only other news is that poor Mom got sick again, this time a stomach thing. I think it was food poisoning -- she ate week-old leftovers that had been packed up in a restaurant from Em's plate. (I should have stopped her....) Matthew had half of them, and of course he's fine. But if Mom ate the part that had saliva on it -- that would have decayed faster. I just can't think where she would have picked up a stomach bug; she's been around no one but us, and stomach bugs are not airborn like colds. YOu have to share food or at least have some kind of physical contact...... She seems much better this evening -- but it sure hit her suddenly yesterday afternoon!
I did finally get that yeast infection taken care of, with an additional 5 day course of diflucan. At least I think it's taken care of... .it's still somewhat itchy, but compared to how it was it's hardly worth mentioning. My primary care doctor called me at home to check on me -- so I was able to tell her that my oncologist wants her to be in charge of managing side effects of chemo, and she said okay -- that was nice to get clarified.
Then my oncologist called me at home, a few days later! That was really neat, because she's been hard to catch. She was great about both my need for her to write instructions on the slower infusion and the plan for the taxol (next chemo, starting in mid July.) The taxol will be complicated because I will need to use a steroid in order to tolerate it in its alcohol base. I had hoped to use abraxane instead, which is the same medication in an albumin base -- which would eliminate the need for steroids. However, it has only been tested on metastatic breast cancer (stage 4.)
The medical oncologist we saw at the Mayo thought it was a no brainer that abraxane would work fine, since it's the same medication as taxol, just in a different base -- but my oncologist at Georgetown is not so comfortable with it. She says there have been too many times when a medication that was sure to work just as well didn't, and she doesn't want to risk it.
The issue with steroids is that they increase intraocular pressure (IOP.) I have glaucoma, and I have just enough damage that I have lost the buffer... the overlapping vision that both eyes see.
Close one eye and look at the nose of a person accross the table from you. Then close the other eye. YOu see how you can see their whole face either way, plus a lot of background? All the stuff you can see with each eye is what I'm referring to as "overlapping vision" -- or the "buffer." And BTW when I do that eye thing I'm describing to you, with my right eye, I generally can't see the upper left hand corner of the person's face -- left from MY point of view, their upper right corner.)
This is why I'm so serious about avoiding steroids...... I have lost just about all the vision I can lose while still being able to maintain my field of vision (with both eyes open :-) So, while I want the chemo to have the best chance it can of killing all the cancer cells it can, if this can be managed without causing any further damage to my vision, I would really prefer that. But who knows? And I really want all the cancer cells GONE! Then once they are dead, the surgeon can remove them too. Dead and deader -- the cancer, not me.
Anyway it will be a process. I have been in touch with my Boston ophthalmologist (one of the world's best doctors) and will see my local ophthalmologist on Tuesday. (He's good too, and will work with my BOston doctor on it, and my oncologist.) I think what will happen is, I will start the taxol and take decadron (the steroid in question) and have my IOP (intraocular pressure) measured and see if I can continue it or whether I need to switch to abraxane..... However, I would like to plan ahead on what to do for my eyes if my pressure goes up (it won't drop immediately upon stopping the steroid.) In fact what i'd really like to do is do some of that ahead of time, preventively.
For example -- maybe I should go to Boston for another eye surgery. (The last one was in 1999, and only in one eye, which should be less susceptible to the effects of the decadron because of it.) Haven't discussed this with Dr Mx yet (Boston MD) or Dr W (local eye dr.) OR Dr. L (oncologist.) So for the moment that's TBD.
So this week I have an eye appt on Tuesday and an oncologist and chemo appt on Thursday. I doubt I will need to go back for neulasta on Friday, though. My white count was UP as of last Friday. I'm actually a little concerned about it because it was over the top of the range.... (12.3 -- the range being 3.6-9.6.) Maybe all that water I drank at the last chemo infusion washed the chemo away before it could work!? I haven't lost my head stubble yet -- if that's any indication. I don't have to shave my armpits anymore, though, and those chin hairs I used to pluck have stopped coming back. (Finally some good side effects!)
Maybe I'm just really sensitive to medication, and the one neulasta shot was so effective for me that the white count kept going up even during that week when my white count is supposed to drop? The only other idea I have is that fighting the yeast infection made it go up. I don't think I have any other infections going on..... you would think I'd notice an infection in my body -- but I didn't notice the cancer.....
The only other news is that poor Mom got sick again, this time a stomach thing. I think it was food poisoning -- she ate week-old leftovers that had been packed up in a restaurant from Em's plate. (I should have stopped her....) Matthew had half of them, and of course he's fine. But if Mom ate the part that had saliva on it -- that would have decayed faster. I just can't think where she would have picked up a stomach bug; she's been around no one but us, and stomach bugs are not airborn like colds. YOu have to share food or at least have some kind of physical contact...... She seems much better this evening -- but it sure hit her suddenly yesterday afternoon!
Friday, May 23, 2008
White Count. etc.
I forgot to mention that the first picture below is of Joan, who has done so much for me that I needed to put her picture in my blog. (She probably would have chosen a different one..... I'm not so good at moving pictures around though.) She gave me Lance Armstrong's book It's Not About The Bike when I was first diagnosed.... after she had come with me to the surgery to remove the lymph node (which I was not worried about) ..... Last Thursday she spent the day with me at Georgetown, which is probably the main thing that made it a good day for me..... She did a LOT in between too, but if I listed all the things she's done for me here she'd probably be mortified, so I'll desist.
Now for the update -- Em is all better, and my white count is UP today! I couldn't believe it -- that neulasta shot I got last Friday (guess who brought me to the hospital again) really worked! It's at 7.6, and the normal range was listed as 3.6-9.6.... and after a 2.7 a week ago Thursday morning before chemo!
Now if only this yeast infection would go away..... I took a diflucan last Saturday, and a 2nd one today....... Last Saturday's only cured the front part of it, but it had already travelled back along my episiotomy scar...... so I'm hoping today's will kill the rear one before it comes forward again. I would not have waited so long (not even for the first dose) but my oncologist was not clear initially about whether I could take it, and then after that, about what her role was to be in the yeast issue..... It bothers me that it got so bad because I have been so diligent about yeast prevention for decades now!!! Also, all the things I do to prevent it...... are struggling to hold it steady now. Oh well, at least it came at a time when I have to be off the bike anyway. (I can barely sit in chairs!)
About the bike thing. I tried to do another 55 mile ride last Wednesday and my knee went out on the way back. I had been tired before that, but I'd ignored it. I hadn't been sleeping great, which is always a sign that I need a good workout..... plus I love riding with the Babes! but I can't ignore a knee issue. So I got a ride home (Thank you Sue F!) and got in to see the chiropractor that afternoon (I owe Megm for pointing me to him.)
The chiropractor tried all his tricks and they didn't fix it -- so he said it's an inflammation -- and that i have to do heat/ice through the weekend, and that when I get back on the bike (hopefully next Wednesday) I need to scale down my biking..... Basically I have to recognize that even though I feel like myself most of the time, the chemo is toxic and my body is handling it, but it's trying..... Kind of obvious, isn't it? (I always have to learn about the obvious, it seems. I'm stubborn that way....) So I guess it's time for me to ride with the slower bikers, and maybe to see if the fast riders I usually ride with will come on a ride with me on their fat tire bikes -- maybe it will slow them own enough that we can ride together comfortably.
Swimming still works. Mom came with me yesterday and today. I did a mile both times in the usual 45 minutes. Then the locker room conversation was really interesting..... people I've swum and showered with for years had to know what was up with the new hairdo..... We barely got out in time to get to the grocery store before Emily's bus! When Mom and I walked to the car I wondered aloud to her why people always seem to talk to us......
I am lucky she's here -- and that I'm well enough to be able to enjoy the time with her!
Now for the update -- Em is all better, and my white count is UP today! I couldn't believe it -- that neulasta shot I got last Friday (guess who brought me to the hospital again) really worked! It's at 7.6, and the normal range was listed as 3.6-9.6.... and after a 2.7 a week ago Thursday morning before chemo!
Now if only this yeast infection would go away..... I took a diflucan last Saturday, and a 2nd one today....... Last Saturday's only cured the front part of it, but it had already travelled back along my episiotomy scar...... so I'm hoping today's will kill the rear one before it comes forward again. I would not have waited so long (not even for the first dose) but my oncologist was not clear initially about whether I could take it, and then after that, about what her role was to be in the yeast issue..... It bothers me that it got so bad because I have been so diligent about yeast prevention for decades now!!! Also, all the things I do to prevent it...... are struggling to hold it steady now. Oh well, at least it came at a time when I have to be off the bike anyway. (I can barely sit in chairs!)
About the bike thing. I tried to do another 55 mile ride last Wednesday and my knee went out on the way back. I had been tired before that, but I'd ignored it. I hadn't been sleeping great, which is always a sign that I need a good workout..... plus I love riding with the Babes! but I can't ignore a knee issue. So I got a ride home (Thank you Sue F!) and got in to see the chiropractor that afternoon (I owe Megm for pointing me to him.)
The chiropractor tried all his tricks and they didn't fix it -- so he said it's an inflammation -- and that i have to do heat/ice through the weekend, and that when I get back on the bike (hopefully next Wednesday) I need to scale down my biking..... Basically I have to recognize that even though I feel like myself most of the time, the chemo is toxic and my body is handling it, but it's trying..... Kind of obvious, isn't it? (I always have to learn about the obvious, it seems. I'm stubborn that way....) So I guess it's time for me to ride with the slower bikers, and maybe to see if the fast riders I usually ride with will come on a ride with me on their fat tire bikes -- maybe it will slow them own enough that we can ride together comfortably.
Swimming still works. Mom came with me yesterday and today. I did a mile both times in the usual 45 minutes. Then the locker room conversation was really interesting..... people I've swum and showered with for years had to know what was up with the new hairdo..... We barely got out in time to get to the grocery store before Emily's bus! When Mom and I walked to the car I wondered aloud to her why people always seem to talk to us......
I am lucky she's here -- and that I'm well enough to be able to enjoy the time with her!
Tuesday, May 20, 2008
Pictures
"Nadine helps to change a tire" is Diane's caption on this one.
Here are some pictures of the last bikeride I was on, last Wednesday, to Lake Needwood. It was a nice 50+ mile bikeride, though I was tired -- which isn't actually standard for me on bikerides, so it must be the chemo. Not that I'm going to slow DOWN or anything..... These were taken by Diane Royal, who was there, but of course doesn't appear in any of the shots....
Can you believe those deer? They were right by the road! And look at that presumptuous goose -- we had to keep shooeing him away from our food!
Sunday, May 18, 2008
sick :-(
Not ME -- Emily. She was FINE yesterday, running around and playing with all kinds of people (one of which was obviously incubating something...) Then she started calling us in the night with stomachaches. She spiked a fever of 103 earlier and can't keep anything down...... like tylenol or advil.
Alan's been taking care of her because I'm not supposed to be around sick people -- but it's killing me not to even look in on her or put my cool hand on her forehead. I finally was able to make myself useful running off to the drugstore to get tylenol suppositories -- only to find out that they don't carry them for kids her age.... she has to have 3-3.5 to get the right dose.
My white count on Thursday am before I had the chemo was 2.7. Normal range is 3.5-10. It tends to dip in between chemo cycles but it's supposed to come back up by the end of the 3 weeks. Mine wasn't that high to begin with (a little over 4) so that's as high as it got. I got a shot of neulasta on Friday to help bring it up more this time..... thank goodness, given Emily's illness. No idea when it should happen, though, or how well it will work. I will get another CBC next week and see.
Luckily I'm feeling fine myself, post chemo this time (???!!) because it's not about me this weekend! So aside from drugstore runs I'm doing loads of laundry, on hot, and changing my shirt every time.... trying not to catch a garden variety illness which, I'm told, could kill me while I have a low white count.
My mom is still recuperating from the cold she got from Matthew (he's better though) as is ALan. Alan seems to be more recuperated than Mom from the cold -- maybe he's well today, but for how long now (given his new role as caretaker for the sick) I have no idea. He's prone to catch things, but maybe more so when they go for his sinuses......One can hope. (Stay away from sick people, the nurse told me -- the nurse on Friday, who gave me the neulasta -- she was great, and very informative, though some of the things she recommended were impossible, like having my own bathroom....)
I don't think I ever explained here the deal with the white count. I suppose a good number of you guys know about it, but for those who don't -- basically the deal is, there isn't really a medication that targets cancer cells specifically. Chemotherapy targets all fast growing cells -- cancer cells, hair, white blood cells, sometimes red blood cells, maybe even platelets. (Did I forget anything?) Thus the side effects. Also -- that means it works better on fast growing cancers -- and less well on slow growing cancers. Which one mine is, is one of those wait-and-see things -- as is how well the chemo works. I can get a sense by checking the tumor, whose shape has definitely changed.
However, the final word on how well the chemo has worked happens after the mastectomy when they check through all the tissues that were removed. The best possible prognosis comes if everything that was removed is either non cancerous or dead cancer tissue. That happens in only 5-10% of cases, Alan tells me. I will do my best to get there, or close to it..... however the hell that works. I sure hope Cat's Claw doens't interfere with it.
That's an herb, unicaria tomentosa. It helps build immunity. My doctor thinks it's okay, but I don't think anyone has tested it on cancer cells, or looked at its interaction with chemo. (Course they probably haven't looked at pot that way either, and everyone knows about pot and chemo nausea....)
Alan's been taking care of her because I'm not supposed to be around sick people -- but it's killing me not to even look in on her or put my cool hand on her forehead. I finally was able to make myself useful running off to the drugstore to get tylenol suppositories -- only to find out that they don't carry them for kids her age.... she has to have 3-3.5 to get the right dose.
My white count on Thursday am before I had the chemo was 2.7. Normal range is 3.5-10. It tends to dip in between chemo cycles but it's supposed to come back up by the end of the 3 weeks. Mine wasn't that high to begin with (a little over 4) so that's as high as it got. I got a shot of neulasta on Friday to help bring it up more this time..... thank goodness, given Emily's illness. No idea when it should happen, though, or how well it will work. I will get another CBC next week and see.
Luckily I'm feeling fine myself, post chemo this time (???!!) because it's not about me this weekend! So aside from drugstore runs I'm doing loads of laundry, on hot, and changing my shirt every time.... trying not to catch a garden variety illness which, I'm told, could kill me while I have a low white count.
My mom is still recuperating from the cold she got from Matthew (he's better though) as is ALan. Alan seems to be more recuperated than Mom from the cold -- maybe he's well today, but for how long now (given his new role as caretaker for the sick) I have no idea. He's prone to catch things, but maybe more so when they go for his sinuses......One can hope. (Stay away from sick people, the nurse told me -- the nurse on Friday, who gave me the neulasta -- she was great, and very informative, though some of the things she recommended were impossible, like having my own bathroom....)
I don't think I ever explained here the deal with the white count. I suppose a good number of you guys know about it, but for those who don't -- basically the deal is, there isn't really a medication that targets cancer cells specifically. Chemotherapy targets all fast growing cells -- cancer cells, hair, white blood cells, sometimes red blood cells, maybe even platelets. (Did I forget anything?) Thus the side effects. Also -- that means it works better on fast growing cancers -- and less well on slow growing cancers. Which one mine is, is one of those wait-and-see things -- as is how well the chemo works. I can get a sense by checking the tumor, whose shape has definitely changed.
However, the final word on how well the chemo has worked happens after the mastectomy when they check through all the tissues that were removed. The best possible prognosis comes if everything that was removed is either non cancerous or dead cancer tissue. That happens in only 5-10% of cases, Alan tells me. I will do my best to get there, or close to it..... however the hell that works. I sure hope Cat's Claw doens't interfere with it.
That's an herb, unicaria tomentosa. It helps build immunity. My doctor thinks it's okay, but I don't think anyone has tested it on cancer cells, or looked at its interaction with chemo. (Course they probably haven't looked at pot that way either, and everyone knows about pot and chemo nausea....)
Saturday, May 17, 2008
Chemo 2
I am doing surprisingly okay this time after chemo -- maybe I am using the antinausea drugs better? I'm not sure. I had a bad experience at the chemo itself which I just wrote an email to the doctor about...... though I have to wonder, now, why it's better after -- and if it has anything to do with it being worse, during. Probably it has more to do with the 4.5 liters of water I drank during the drip in a vain attempt to compensate for the too-fast drip. I hope it didn't flush the medicine out too quickly though.
The blue writing below is exerpted from an email I sent to the doctor today -- and this whole blog post is a big rerun for Zack and Lynn. (I just never think of the blog first.) Anyway here goes:
I had learned during my first chemotherapy infusion (3 weeks ago at Arlington Hospital) that I experienced bad side effects during the course of the treatment when the infusion of cytoxan came through faster than 100ml/hr. Last Thursday I came prepared to let the new infusion nurse know about this from the getgo, and I did. However, I did not anticipate her refusal to respond to a patient's knowledge of her own body.
The nurse refused to slow the drip down; in fact she had me wait over an hour before administering it while she got approval from my doctor to slow the drip down -- after which she came back with the adriamycin in a 30 min infusion, and the cytoxan just the same. (I hadn't had any issues with the adriamycin push the first time, and the bag of cytoxan infusion didn't need to be changed, only the pace at which it was infused needed to be slowed down.)
She gave me a bag of saline first, and insisted that it would do the same job as slowing the drip down. When she started the cytoxan drip it was set for 297 ml/hr (twice the speed that it had been set for when I started it the first time, and three times the speed I had told her I knew I needed.) I let her know when I started getting symptoms, and she slowed the drip down. The symptoms continued, and she slowed it down yet again. I drank as much water as I could fit in me while the cytoxan was coming through (4.5 liters) in a vain effort to compensate for the speed of the drip, but the symptoms continued. By the time she slowed it to 100 ml/hr it was too late to stop the symptoms, and I left the building feeling sick.
By the end the nurse realized that I did in fact need the drip as slow as I had said, and told me that we'd need to talk with the doctor about getting me up to the infusion unit earlier so the drip can be administered more slowly. However, from what I observed. this issue could easily be resolved by the doctor prearranging with the chemo unit that my cytoxan drip be set for 100 ml/hr, and alerting them to the fact that the admininstration of the cytoxan alone will take close to 2 hours, so that they can get me started within an hour of my arrival on the floor.
Last Thursday I arrived at the infusion unit desk at 1:30pm (admittedly 2 hrs late, as my 10 am appt. with the doctor took a lot longer than she had anticipated -- waiting time, almost entirely) was not started on any kind of infusion until approximately 3:15-3:30, and was discharged at 6:35pm.
Anyway it all does have a happy ending -- though I felt sicker initially I feel much better today and yesterday than I did after chemo last time. (Thus my worry about having flushed the drugs out of my system too quickly.....) Also, though my white count was low enough for a neulasta shot even though my chemo appts. are 3 weeks apart, my mouth sore is healing (I think because I spent one day not eating much -- yesterday -- the sore is on the lower lip, and it's hard to heal when you're in the line of fire like that.
Hopefully the drip speed thing will be resolved before next time.....
The blue writing below is exerpted from an email I sent to the doctor today -- and this whole blog post is a big rerun for Zack and Lynn. (I just never think of the blog first.) Anyway here goes:
I had learned during my first chemotherapy infusion (3 weeks ago at Arlington Hospital) that I experienced bad side effects during the course of the treatment when the infusion of cytoxan came through faster than 100ml/hr. Last Thursday I came prepared to let the new infusion nurse know about this from the getgo, and I did. However, I did not anticipate her refusal to respond to a patient's knowledge of her own body.
The nurse refused to slow the drip down; in fact she had me wait over an hour before administering it while she got approval from my doctor to slow the drip down -- after which she came back with the adriamycin in a 30 min infusion, and the cytoxan just the same. (I hadn't had any issues with the adriamycin push the first time, and the bag of cytoxan infusion didn't need to be changed, only the pace at which it was infused needed to be slowed down.)
She gave me a bag of saline first, and insisted that it would do the same job as slowing the drip down. When she started the cytoxan drip it was set for 297 ml/hr (twice the speed that it had been set for when I started it the first time, and three times the speed I had told her I knew I needed.) I let her know when I started getting symptoms, and she slowed the drip down. The symptoms continued, and she slowed it down yet again. I drank as much water as I could fit in me while the cytoxan was coming through (4.5 liters) in a vain effort to compensate for the speed of the drip, but the symptoms continued. By the time she slowed it to 100 ml/hr it was too late to stop the symptoms, and I left the building feeling sick.
By the end the nurse realized that I did in fact need the drip as slow as I had said, and told me that we'd need to talk with the doctor about getting me up to the infusion unit earlier so the drip can be administered more slowly. However, from what I observed. this issue could easily be resolved by the doctor prearranging with the chemo unit that my cytoxan drip be set for 100 ml/hr, and alerting them to the fact that the admininstration of the cytoxan alone will take close to 2 hours, so that they can get me started within an hour of my arrival on the floor.
Last Thursday I arrived at the infusion unit desk at 1:30pm (admittedly 2 hrs late, as my 10 am appt. with the doctor took a lot longer than she had anticipated -- waiting time, almost entirely) was not started on any kind of infusion until approximately 3:15-3:30, and was discharged at 6:35pm.
Anyway it all does have a happy ending -- though I felt sicker initially I feel much better today and yesterday than I did after chemo last time. (Thus my worry about having flushed the drugs out of my system too quickly.....) Also, though my white count was low enough for a neulasta shot even though my chemo appts. are 3 weeks apart, my mouth sore is healing (I think because I spent one day not eating much -- yesterday -- the sore is on the lower lip, and it's hard to heal when you're in the line of fire like that.
Hopefully the drip speed thing will be resolved before next time.....
Posting Comments
I've been hearing from several people that they don't know how to post comments. It was suggested that I post instructions..... so here they are.
If you click on the place in the blog that says "0 comments" or "4 comments" or whatever, it will show you the comments that other people have made. There will be a blank box in the upper right hand corner and instructions to post your own comment there. I think maybe you have to post as "anonymous" if you don't have a gmail account or something -- but you can write your name in the body of the comment, if that happens.
That's how it's always worked for me. I suppose it might be one of those things that some computers do differently, but try this, anyhow. We DO love comments!!!
Thanks! :-D
If you click on the place in the blog that says "0 comments" or "4 comments" or whatever, it will show you the comments that other people have made. There will be a blank box in the upper right hand corner and instructions to post your own comment there. I think maybe you have to post as "anonymous" if you don't have a gmail account or something -- but you can write your name in the body of the comment, if that happens.
That's how it's always worked for me. I suppose it might be one of those things that some computers do differently, but try this, anyhow. We DO love comments!!!
Thanks! :-D
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