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....
Tuesday, May 13, 2008
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.
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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.)
Saturday, May 3, 2008
adustment
I would say that this week has been the hardest one for me, i dont know why it just was, i have had a couple bad days just randomly about the whole thing. There were a couple of times i just burst into tears and cryed for a while, the whole time when i am accually thinking about what is going on i realize that i shouldn't be worried because my mom is in good hands ( even if we do have to wait like 1 and a half hours to have my moms blood drawn and talk to the doctor) in a sceduald appointment. ( dont bother about the spelling)
All in all i have had a pretty bad week exept i am really happy about all the offers to help us out, it means alot to me
(please let me know what you think about all of this!)
All in all i have had a pretty bad week exept i am really happy about all the offers to help us out, it means alot to me
(please let me know what you think about all of this!)
Thursday, May 1, 2008
Energy!
Yesterday was my first reliably well day since the chemo last Thursday. (I know I posted that I was feeling better on Monday afternoon, but Tuesday am was another story.) I don't know if I'm better because it's just been enough days since the chemo, or if it has something todo with taking the anti nausea med at night, even though I'm not nauseous then. I started doing that Tuesday night (hoping it would help) because waking up nauseous just messes up the day.... can't get my energy up if I can't eat, and then what can I do?
Yesterday I went on a bikeride with the Babes. It was great but they got worried and sent me back early with an escort! I was fine though, and would have ridden harder and faster. Tomorrow I'm going to do the whole ride -- and it's going to be a pretty one! I hope the bike cooperates.... it complained a little about gear changes.
Now if I can stomach the chlorine smell I will go swimming. (smell never bothered my stomach before!) If I can't (or if Pinky guilt trips me) I will go for a long dog walk instead. Course I always get sleepy around when the pool opens.... in about 5 minutes! :-D
Yesterday I went on a bikeride with the Babes. It was great but they got worried and sent me back early with an escort! I was fine though, and would have ridden harder and faster. Tomorrow I'm going to do the whole ride -- and it's going to be a pretty one! I hope the bike cooperates.... it complained a little about gear changes.
Now if I can stomach the chlorine smell I will go swimming. (smell never bothered my stomach before!) If I can't (or if Pinky guilt trips me) I will go for a long dog walk instead. Course I always get sleepy around when the pool opens.... in about 5 minutes! :-D
Monday, April 28, 2008
Feeling Better!
Around midday today I turned a corner. It was almost in time to swim..... it was in time to walk but it was raining buckets. (Pinky won't come out when it's raining. She thinks she's a cat.) It was still good though -- I was hungry!
I got my bike back from Jonathan (world's best bike mechanic) even though it's only good for a couple of weeks. He says it needs an overhaul -- I'm planning to get it to him JUST before my next treatment. I'm going to be ready to bike by the time it stops raining now..... which looks like Wednesday. I hope this treatment regimen works because it seems like it might be doable.... (I don't feel the tumor shrinking yet..... pity if it doesn't. But it's only been 4.5 days so far.)
I have to remember that how I feel isn't exactly an indication of how well the treatment is working ... it's just recuperation from the meds. Still it feels like a kind of victory to be out from under the cycle of nausea/ dizziness & sleepiness caused by the nausea medication. I feel like I'm not quite myself without my energy. Maybe even more than without my hair! Course I don't know about that yet.....hair's still here.
OH here, I have a question. My friend Cara who cuts my hair offered to cut it short for me when she comes over to style my wig (probably wednesday. And no I don't know how much I will use the wig -- maybe just for work so i don't scare the small children.... maybe not even then.) Her thinking is that if I have a short haircut it will be less of a shock when it all falls out. I'm undecided about whether to take her up on it. My instinct is to keep my hair long and wild for as long as possible.... but on the other hand she's really good with hair and this would be a chance to try something new that I might not usually have the guts to try..... So -- who knows what I will do, but I'd love to hear opinions!
I got my bike back from Jonathan (world's best bike mechanic) even though it's only good for a couple of weeks. He says it needs an overhaul -- I'm planning to get it to him JUST before my next treatment. I'm going to be ready to bike by the time it stops raining now..... which looks like Wednesday. I hope this treatment regimen works because it seems like it might be doable.... (I don't feel the tumor shrinking yet..... pity if it doesn't. But it's only been 4.5 days so far.)
I have to remember that how I feel isn't exactly an indication of how well the treatment is working ... it's just recuperation from the meds. Still it feels like a kind of victory to be out from under the cycle of nausea/ dizziness & sleepiness caused by the nausea medication. I feel like I'm not quite myself without my energy. Maybe even more than without my hair! Course I don't know about that yet.....hair's still here.
OH here, I have a question. My friend Cara who cuts my hair offered to cut it short for me when she comes over to style my wig (probably wednesday. And no I don't know how much I will use the wig -- maybe just for work so i don't scare the small children.... maybe not even then.) Her thinking is that if I have a short haircut it will be less of a shock when it all falls out. I'm undecided about whether to take her up on it. My instinct is to keep my hair long and wild for as long as possible.... but on the other hand she's really good with hair and this would be a chance to try something new that I might not usually have the guts to try..... So -- who knows what I will do, but I'd love to hear opinions!
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