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....)
Sunday, May 18, 2008
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
Tuesday, May 13, 2008
Bikeride and Chemo
Well tomorrow's my last bikeride before the 2nd chemo on Thursday. Thanks to the cooperation of BikeWrenching Jonathan, my Pilot (nice bike) has been good enough to wait for the overhaul ... I have to bring it in tomorrow afternoon after my ride so we can be on the fritz together -- and my old mountain bike is all fixed up to take me to the chemo on Thursday. (Phew! If you saw the parking garage at Georgetown you'd understand.... Alan insisted on a chaperone. Joan volunteered..... :-D)
The hair is all gone. The short haircut was a bust.... I had to step into my clothes or wear a hat when pulling shirts over my head to avoid getting all that itchy hair under my shirt -- the way you get right after a haircut, but MORE.
Hey, I have a mystery...... Who sent us the indoor bulb garden? It had no note and so far all our guesses are wrong. I'd thank you, if I knew who you were....
The hair is all gone. The short haircut was a bust.... I had to step into my clothes or wear a hat when pulling shirts over my head to avoid getting all that itchy hair under my shirt -- the way you get right after a haircut, but MORE.
Hey, I have a mystery...... Who sent us the indoor bulb garden? It had no note and so far all our guesses are wrong. I'd thank you, if I knew who you were....
Friday, May 9, 2008
BRCA negative!
This afternoon I got the call from the geneticist at the Mayo clinic -- the 2nd part of my test has now come back, and both parts found me BRCA 1/2 NEGATIVE!!!! So -- my kids and cousins all still have a breast cancer risk to the extent that they share my genetic background, but it's not the high risk that goes along with BRCA.
Alan tells me that the test has a 10% false negative rate, which is high considering how expensive a test it is. However, it's the best we can get -- and my risk was only 12-23% anyway (much higher than I would have thought -- apparently having an Ashkenazi Jewish background is a big risk factor!) The only genetic risk I know of other than that comes from Great Aunt Marcia, my paternal grandmother's sister. It is assumed that some of where my breast cancer comes from involves a genetic risk of SOME sort regardless, because I am so young and healthy and athletic, eat right... etc. and I got it anyway. However it is not the high genetic risk of the BRCA mutations -- we think.
----------- ---------------- --------------- ----------------- ------------ ------------
BTW I cut all my hair off yesterday, in preparation for shaving -- and then I decided it looked okay that way.... so I held off on the shaving for the moment, and today Cara came to fix up the butchered haircut for me. (Emily is calling me "Spike.") However, I am still shedding so fast I will be surprised if I get to keep this spikey new do for longer than 2-3 days.
I was careful to cut it off into a ponytail, which I am saving. It's 9" at its longest. I need to find out if Locks with Love can use it.... Does anyone know?
Meanwhile, the weather changed and my neck and ears are cold. I keep reaching up to let my ponytail down to warm me up.... what do short haired people do about this kind of thing?
Alan tells me that the test has a 10% false negative rate, which is high considering how expensive a test it is. However, it's the best we can get -- and my risk was only 12-23% anyway (much higher than I would have thought -- apparently having an Ashkenazi Jewish background is a big risk factor!) The only genetic risk I know of other than that comes from Great Aunt Marcia, my paternal grandmother's sister. It is assumed that some of where my breast cancer comes from involves a genetic risk of SOME sort regardless, because I am so young and healthy and athletic, eat right... etc. and I got it anyway. However it is not the high genetic risk of the BRCA mutations -- we think.
----------- ---------------- --------------- ----------------- ------------ ------------
BTW I cut all my hair off yesterday, in preparation for shaving -- and then I decided it looked okay that way.... so I held off on the shaving for the moment, and today Cara came to fix up the butchered haircut for me. (Emily is calling me "Spike.") However, I am still shedding so fast I will be surprised if I get to keep this spikey new do for longer than 2-3 days.
I was careful to cut it off into a ponytail, which I am saving. It's 9" at its longest. I need to find out if Locks with Love can use it.... Does anyone know?
Meanwhile, the weather changed and my neck and ears are cold. I keep reaching up to let my ponytail down to warm me up.... what do short haired people do about this kind of thing?
Thursday, May 8, 2008
... Gone tomorrow!
I'm practicing wearing scarves on my head -- call it transition day. I'm shedding so fast it's even bothering ME, and the scarf keeps it from getting all over everything.
When I washed it after swimming today so much came out I was quick to pick it up before the drain choked on it! No obvious bald spots though -- just thinner. (I think some people might even have hair this thin all the time -- but mine has always been thick and big.) I was careful to make sure no one else was in the showers when I shampooed, again. Will I have to be careful next week too, I wonder, when I take my pool cap off and there's no hair under it? I don't feel private -- about much of anything -- but I don't want to upset people. How upset will people be to see me bald, I wonder....?
I have what's left of my hair (half to 2/3 I would guess) in a ponytail under the scarf -- I hope there's enough left to give away.... though I don't know if it's long enough for Locks with Love. I love the idea of a cancer patient who's losing her hair giving it to be made for wigs for kids who have lost their hair.... well we'll see if it's possible.... it was/is 9" at its longest.
The cool thing is, I do finally feel a change in the shape of the tumor, just today. It's not oval anymore -- but bumpily shaped., as though it's getting eaten away at (unless it's growing, but I think that's got to be less likely at this moment, given the chemo.) Now that's worth giving up some hair for!!
When I washed it after swimming today so much came out I was quick to pick it up before the drain choked on it! No obvious bald spots though -- just thinner. (I think some people might even have hair this thin all the time -- but mine has always been thick and big.) I was careful to make sure no one else was in the showers when I shampooed, again. Will I have to be careful next week too, I wonder, when I take my pool cap off and there's no hair under it? I don't feel private -- about much of anything -- but I don't want to upset people. How upset will people be to see me bald, I wonder....?
I have what's left of my hair (half to 2/3 I would guess) in a ponytail under the scarf -- I hope there's enough left to give away.... though I don't know if it's long enough for Locks with Love. I love the idea of a cancer patient who's losing her hair giving it to be made for wigs for kids who have lost their hair.... well we'll see if it's possible.... it was/is 9" at its longest.
The cool thing is, I do finally feel a change in the shape of the tumor, just today. It's not oval anymore -- but bumpily shaped., as though it's getting eaten away at (unless it's growing, but I think that's got to be less likely at this moment, given the chemo.) Now that's worth giving up some hair for!!
Tuesday, May 6, 2008
Hair Today....
Well today my CBC showed an "appropriately lowered" white count, and my hair is starting to shed more than usual -- though no obvious bald spots have appeared yet. I was a bit worried when I showered at the high school pool after swimming today that I would scare the other swimmers by losing half my hair and would have to reassure them that it was expected.... Luckily there wasn't anyone else in the showers when I shampooed my hair -- except my mom.
Mom came yesterday! She came to help -- I was hoping to reassure her with how ME I still am. And now I'm hoping that some of the time we will have a good time (we have so far!) and she will rediscover swimming. (She taught me, long ago. I think she's going to discover that she's stronger now than she thinks.) She helps even when she doesn't notice -- today Emily hung out with her after school while I was busy, and Em seemed much happier for it.
Today was a great day except that I'm up too late again. So I'm off to bed! (The times this blog says seem to be Pacific time or something.... it's a few minutes after midnight.)
Mom came yesterday! She came to help -- I was hoping to reassure her with how ME I still am. And now I'm hoping that some of the time we will have a good time (we have so far!) and she will rediscover swimming. (She taught me, long ago. I think she's going to discover that she's stronger now than she thinks.) She helps even when she doesn't notice -- today Emily hung out with her after school while I was busy, and Em seemed much happier for it.
Today was a great day except that I'm up too late again. So I'm off to bed! (The times this blog says seem to be Pacific time or something.... it's a few minutes after midnight.)
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