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?

... 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!!

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.)