Forgot to mention in the update I posted earlier today -- I seem to be growing hair. It feels like peach fuzz, but it's the same color it was before, brown on top and white on the sides. (That works out just fine with long hair, as long as you don't pin it back; then all the white shows. I'm going to look like I've gone a lot grayer now, though, until it grows long again.)
It seems early, though. I've been growing it since I started taxol, which is exactly opposite from what I expected..... I heard that if I didn't lose my hair with the adriamycin, I would most certainly lose it with the taxol. So what does it mean that I'm growing hair while on taxol? YOu know what I'm worried about..... that it means it's not working. I did ask the doctor about it last time I saw her (a week ago yesterday) and she said it's a normal thing..... However, she was not clear on whether it's "real" hair or intermittent hair, which will go and come again later. I suppose it could be either......
I guess there are a lot of "normal" things. I have a new friend who I met on the infusion unit who goes to the same oncologist -- who says she has shrunk two bra sizes and our doctor told her that's normal, too. Probably something about less estrogen. She likes the new size -- I guess she was huge before, because she's quite large now. Maybe it's a normal thing for large breasted women.... my size is just the same as always -- well the same as after Matthew finished nursing, which is a little smaller than before he was born. :-D (He's still the better eater!)
One more thing -- I have been hearing that LOTS of people are reading this blog. That's great! However, I get no comments here, day after day and week after week. I did, in the beginning. I think you can post a comment by clicking on the thing that says "0 comments." If when you click on it it says 1 or 2 or something comments, then you can read what other people have said in their comments when you click on it.
I'm just saying this in case people don't know how to post comments. I suspect a lot of people know and just aren't doing it -- but I would LOVE to have comments posted! It would make me feel like someone really is reading this and it's not just another form of mental masturbation, which is what it feels like sometimes..... though I do get email responses from a few people, which are nice, too.
Friday, August 15, 2008
MIscellaneous update
I seem to have my first side effect from taxol -- maybe -- though it's not the classic one I was worrying about (neuropathy) yet. (wouldn't mind skipping that one!) It's, um..... I kind of have the walk-quicklies, since Monday. I'm not sure it's the taxol, and I've had digestive upsets before, and it's not that bad (though I don't like the gas I get beforehand, especially when it keeps me up at night.) When I first got it it was overnight after I'd had chili with beans for dinner, so I didn't think any further than that, but it has continued after every meal since then, regardless of the fact that the food has varied widely and has not included beans since then -- so I'm thinking it must be the taxol.
I was kinda tired on my bikeride today - had trouble keeping up with the others. The others happened to be a fast group today, and the ride was a hilly 40 miles, but I've done it before with no trouble..... and I even pumped my tires before I left this morning! I'm thinking the main culprit was my poor night's sleep last night -- though I know there are cumulative effects from the taxol, and if this happens again (despite better sleep) I will know it's chemo related.
Meanwhile I'm thinking no more rides until next Wedensday, and then only if I can get Miss Em a playdate..... but that's pretty standard, for me..... MOnday rides are hill rides, and not so tempting. I do get tempted to do the Tuesday Maryland rides sometimes. (I did that this week -- a Tuesday ride with two Marylanders and one other VA woman -- that was a fast 45 mile one, surprise surprise! Then I did a Wednesday trail ride, which was brief (18 miles), then I rode the old bike to Georgetown on Thursday, which was even briefer (12 miles round trip)..... I walked the dog for an hour in the evening, but I guess it wasn't enough because my night's sleep was choppy. Then today I did a 40 m ride. So I'm thinking that ought to be enough biking for a little while, time for some swimming and strength training -- and sleep, if I can get it!
This week my in laws (who arrived yesterday) are taking Matthew camping tomorrow until Wednesday. Alan is also going to Geneva tomorrow, for a week. So we're going to have girl time, and I'm thinking I will do one ride if I can find E a playdate at the appropriate time, and other than that we will go to the pool (if she brings a friend I can swim) and, hmm, I guess she can stay home alone or be at a friend's house when i take Pinky on long walks. I will plan to take her to at least one movie, and out to lunch a couple of times...... she loves shopping but I'd like to avoid that if possible. Aside from the fact that she has enough clothes for now, I don't much like shopping myself......
Although I did kind of enjoy our stop at G street fabrics yesterday..... we picked out several pieces of brightly patterned material -- one of which I'm wearing wrapped around my head right now! But see that was okay not just because it was for me, but mainly because we did it in like 5-10 minutes. The kind of time I have for shopping is brief -- it's probably a patience thing.
Meanwhile my dog is still barking at nothing (or nothing much), my son is still staying up late and sleeping late, my husband is still having job search angst (would you believe his job funding disappears at the end of October? I might get my mastectomy in before it ends, but we will probably have to Cobra. It's a pity because our health insurance has been great so far.) My daughter is okay -- except when she isn't. She'll be starting a new school in a couple of weeks. It's the local middle school, but she didn't go to the local elementary school (she went to the bilingual immersion school 3 miles southof here.) No one from her elementary school will be there..... and none of her local friends are in her grade....... OH and of course all the meetings and orientation and everything are on Thursdays, which is my chemo day. I did call them at the beginning of the summer, asking for the dates so I could plan around them (I could have scheduled one chemo for a Friday or something, had I known early enough.) In the end I will have to go to Georgetown twice on the 28th, once early in the morning to see the doctor, and again in the afternoon after orientation and HOPEfully a teacher meeting or two. I hope the doctor visit doesn't run over. I have been getting home close to 5 when my chemo is scheduled for 11:30 am -- though this chemo doesn't take a long time; they just don't mix the meds until they see my face, so I wait at least an hour before starting my premeds. (Yesterday it was over two hours because the pharmacy was busy! Luckily I found a friend whose chemo was done just 5 minutes after Joan arrived, because I had left my book at home.) I shudder to think when I will get home on teh 28th! Luckily my in-laws will be here, so maybe they will hold the fort and do dinner and the dog.
NOthing else. The tumor hasn't disappeared yet, which is too slow for me. However, we all know how patient I've always been...... :-D
I was kinda tired on my bikeride today - had trouble keeping up with the others. The others happened to be a fast group today, and the ride was a hilly 40 miles, but I've done it before with no trouble..... and I even pumped my tires before I left this morning! I'm thinking the main culprit was my poor night's sleep last night -- though I know there are cumulative effects from the taxol, and if this happens again (despite better sleep) I will know it's chemo related.
Meanwhile I'm thinking no more rides until next Wedensday, and then only if I can get Miss Em a playdate..... but that's pretty standard, for me..... MOnday rides are hill rides, and not so tempting. I do get tempted to do the Tuesday Maryland rides sometimes. (I did that this week -- a Tuesday ride with two Marylanders and one other VA woman -- that was a fast 45 mile one, surprise surprise! Then I did a Wednesday trail ride, which was brief (18 miles), then I rode the old bike to Georgetown on Thursday, which was even briefer (12 miles round trip)..... I walked the dog for an hour in the evening, but I guess it wasn't enough because my night's sleep was choppy. Then today I did a 40 m ride. So I'm thinking that ought to be enough biking for a little while, time for some swimming and strength training -- and sleep, if I can get it!
This week my in laws (who arrived yesterday) are taking Matthew camping tomorrow until Wednesday. Alan is also going to Geneva tomorrow, for a week. So we're going to have girl time, and I'm thinking I will do one ride if I can find E a playdate at the appropriate time, and other than that we will go to the pool (if she brings a friend I can swim) and, hmm, I guess she can stay home alone or be at a friend's house when i take Pinky on long walks. I will plan to take her to at least one movie, and out to lunch a couple of times...... she loves shopping but I'd like to avoid that if possible. Aside from the fact that she has enough clothes for now, I don't much like shopping myself......
Although I did kind of enjoy our stop at G street fabrics yesterday..... we picked out several pieces of brightly patterned material -- one of which I'm wearing wrapped around my head right now! But see that was okay not just because it was for me, but mainly because we did it in like 5-10 minutes. The kind of time I have for shopping is brief -- it's probably a patience thing.
Meanwhile my dog is still barking at nothing (or nothing much), my son is still staying up late and sleeping late, my husband is still having job search angst (would you believe his job funding disappears at the end of October? I might get my mastectomy in before it ends, but we will probably have to Cobra. It's a pity because our health insurance has been great so far.) My daughter is okay -- except when she isn't. She'll be starting a new school in a couple of weeks. It's the local middle school, but she didn't go to the local elementary school (she went to the bilingual immersion school 3 miles southof here.) No one from her elementary school will be there..... and none of her local friends are in her grade....... OH and of course all the meetings and orientation and everything are on Thursdays, which is my chemo day. I did call them at the beginning of the summer, asking for the dates so I could plan around them (I could have scheduled one chemo for a Friday or something, had I known early enough.) In the end I will have to go to Georgetown twice on the 28th, once early in the morning to see the doctor, and again in the afternoon after orientation and HOPEfully a teacher meeting or two. I hope the doctor visit doesn't run over. I have been getting home close to 5 when my chemo is scheduled for 11:30 am -- though this chemo doesn't take a long time; they just don't mix the meds until they see my face, so I wait at least an hour before starting my premeds. (Yesterday it was over two hours because the pharmacy was busy! Luckily I found a friend whose chemo was done just 5 minutes after Joan arrived, because I had left my book at home.) I shudder to think when I will get home on teh 28th! Luckily my in-laws will be here, so maybe they will hold the fort and do dinner and the dog.
NOthing else. The tumor hasn't disappeared yet, which is too slow for me. However, we all know how patient I've always been...... :-D
Sunday, August 10, 2008
Long overdue update
Sorry -- I've been remiss in not posting. I have a good reason, though -- I had a number of wonderful visitors last week, the last of whom have just left, and have basically been having a wonderful summer vacation at home. Thanks to Sandi, Jim, Adam, Julianna, Sharon and Maretta for bringing it to me!!!!
Anyway last week I had two doctor's visits, which is a cool thing, because the first one was with the "nutrition/fitness" oncologist. Now, I have been asked why I would need to see her, but in fact she gave me great information about a strength training workout for bone density, which chemotherapy does a number on. I had started lifting weights for this purpose, but the doctor recommends that I not continue that, and instead work on the training she recommends, which focuses on lower body weight bearing -- or anti-gravity exercises, as I think she called them. Her program involved stairs, lunges, and squats -- 3 sets of 12 each. Additionally she is having me do the same arm exercises I had started to do with 5 lb weights, but with NO weights! She was particularly emphatic about not using weights after the surgery, as it can cause lymphadema (swelling of the arm from which the nodes are to be removed -- sometimes huge and crippling and much easier to prevent than to reverse, I think.) ANyway I'm to do this strength training workout twice a week, always at least a couple of days apart. That was on Tuesday. I haven't started the training yet because of the guests, but I will.
Then on Thursday I saw my regular oncologist, before chemo. I brought her my big question about continuing chemo beyond the recommended guidelines to increase my chances of long term survival. She basically said that she only recommends that when the primary tumor is almost in complete remission, in order to get it there. She said that while it's known that complete remission predicts a better prognosis, more shrinkage (short of complete remission) doesn't necessarily -- so she wouldn't go for it.
This sounds to me like the kind of thing that hasn't been proven yet but probably will be -- at least in some cases. (Tumors are so different and treatment hasn't been individualized yet to account for that......) It also sounds like the kind of thing that I should have some say in, given that it's MY BODY. HOwever, it was like fighting CIty Hall to try to get her to see that..... In the end she seemed to be frustrated at my lack of willingness to follow her lead unquestioningly. (I've always been a bad sheep.)
However, she did say that with large tumors like mine complete remission is extremely unusual (5-10% maybe?) and also that my kind of tumor (estrogen + & progrogesterone +) often responds better to hormone therapy. I then remembered that the fitness oncologist, too, had said that estrogen positive tumors really like estrogen, and really don't like it when you take it away. She also said that black cohosh (my suspected catalyst for this cancer) is basically estrogen -- and that she would recommend stopping eating soy, completely, as well.
Alan had said I should cut down, and had thought that soy isoflavones were to be avoided, but that soy protein was okay (for example in boca burgers.) However, this is to my mind a whole nother thing, also given that it might be a kind of "hormone therapy."
SO now I have stopped eating soy. I have a short list of other things I have seen it recommended that I avoid as well, including coffee and decaf coffee, alfalfa sprouts, red clover, chamomile, and a few other herbs. This will be a big change for me (the soy thing especially, which is in a lot of things, and which I have also leaned on heavily because of my rather severe lactose intolerance.) I have stuff I have bought for myself that I could eat (no sugar, no dairy) which I now cannot. I may give away a lot of our tofu and tempeh.... at least Matthew likes the soymilk.
I wonder if I will be able to effect enough change to get my tumor down to almost-in-remission. The doctor said it was down to 3.5 cm on Thursday, having started out at 7. (It was at 5.5 when last measured.) That oughtta be a shrinkage of more than half, given the area of a sphere thing (thank you, Joan Shaeffer!) though of course it's a bit of a squished sphere. I wonder if I can get it to shrink another 2 cms, whether she will then extend treatment.
However, I have to say -- it still seems to be that if my tumor is continuing to shrink at a steady pace, then complete remission ought to be attainable. NOt that I'm trying to avoid surgery -- what I want is complete remission AND removal of what is left of it. Well, we will see what happens (and what I can manage to do...) In the meantime, any tips are welcome..... except about lactaid milk; I'm too lactose intolerant to manage it..... & never liked milk anyway. Maybe the question is about whether the tumor will continue to shrink or whether it's done -- the fitness oncologist had mentioned that there is a certain amount of shrinkage tumors do with chemo, and then they don't do anymore. Certainly if it stops shrinking w/chemo I won't want to waste time on any more......
Anyway last week I had two doctor's visits, which is a cool thing, because the first one was with the "nutrition/fitness" oncologist. Now, I have been asked why I would need to see her, but in fact she gave me great information about a strength training workout for bone density, which chemotherapy does a number on. I had started lifting weights for this purpose, but the doctor recommends that I not continue that, and instead work on the training she recommends, which focuses on lower body weight bearing -- or anti-gravity exercises, as I think she called them. Her program involved stairs, lunges, and squats -- 3 sets of 12 each. Additionally she is having me do the same arm exercises I had started to do with 5 lb weights, but with NO weights! She was particularly emphatic about not using weights after the surgery, as it can cause lymphadema (swelling of the arm from which the nodes are to be removed -- sometimes huge and crippling and much easier to prevent than to reverse, I think.) ANyway I'm to do this strength training workout twice a week, always at least a couple of days apart. That was on Tuesday. I haven't started the training yet because of the guests, but I will.
Then on Thursday I saw my regular oncologist, before chemo. I brought her my big question about continuing chemo beyond the recommended guidelines to increase my chances of long term survival. She basically said that she only recommends that when the primary tumor is almost in complete remission, in order to get it there. She said that while it's known that complete remission predicts a better prognosis, more shrinkage (short of complete remission) doesn't necessarily -- so she wouldn't go for it.
This sounds to me like the kind of thing that hasn't been proven yet but probably will be -- at least in some cases. (Tumors are so different and treatment hasn't been individualized yet to account for that......) It also sounds like the kind of thing that I should have some say in, given that it's MY BODY. HOwever, it was like fighting CIty Hall to try to get her to see that..... In the end she seemed to be frustrated at my lack of willingness to follow her lead unquestioningly. (I've always been a bad sheep.)
However, she did say that with large tumors like mine complete remission is extremely unusual (5-10% maybe?) and also that my kind of tumor (estrogen + & progrogesterone +) often responds better to hormone therapy. I then remembered that the fitness oncologist, too, had said that estrogen positive tumors really like estrogen, and really don't like it when you take it away. She also said that black cohosh (my suspected catalyst for this cancer) is basically estrogen -- and that she would recommend stopping eating soy, completely, as well.
Alan had said I should cut down, and had thought that soy isoflavones were to be avoided, but that soy protein was okay (for example in boca burgers.) However, this is to my mind a whole nother thing, also given that it might be a kind of "hormone therapy."
SO now I have stopped eating soy. I have a short list of other things I have seen it recommended that I avoid as well, including coffee and decaf coffee, alfalfa sprouts, red clover, chamomile, and a few other herbs. This will be a big change for me (the soy thing especially, which is in a lot of things, and which I have also leaned on heavily because of my rather severe lactose intolerance.) I have stuff I have bought for myself that I could eat (no sugar, no dairy) which I now cannot. I may give away a lot of our tofu and tempeh.... at least Matthew likes the soymilk.
I wonder if I will be able to effect enough change to get my tumor down to almost-in-remission. The doctor said it was down to 3.5 cm on Thursday, having started out at 7. (It was at 5.5 when last measured.) That oughtta be a shrinkage of more than half, given the area of a sphere thing (thank you, Joan Shaeffer!) though of course it's a bit of a squished sphere. I wonder if I can get it to shrink another 2 cms, whether she will then extend treatment.
However, I have to say -- it still seems to be that if my tumor is continuing to shrink at a steady pace, then complete remission ought to be attainable. NOt that I'm trying to avoid surgery -- what I want is complete remission AND removal of what is left of it. Well, we will see what happens (and what I can manage to do...) In the meantime, any tips are welcome..... except about lactaid milk; I'm too lactose intolerant to manage it..... & never liked milk anyway. Maybe the question is about whether the tumor will continue to shrink or whether it's done -- the fitness oncologist had mentioned that there is a certain amount of shrinkage tumors do with chemo, and then they don't do anymore. Certainly if it stops shrinking w/chemo I won't want to waste time on any more......
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