Imagine Bright Futures II

Guess I’ve been having too much fun to blog

Amya — Thu, 29 Sep 2011 03:13:49 +0000

…can it be true that a whole year has gone by since I posted?! Oh my. This summer, spent a lot of time with a 6 yr old who is pretty fantastic. We have a mutual admiration society going on. And her single dad isn’t too bad either. Played a lot -kayaked, played frisbee, played ping pong; went to concerts, made a lot of dinners, gardened, exercised, lost weight, got rid of a lot of too-big clothes, got a tattoo of a fake nipple on the reconstructed boob, worked hard during the week, slept in on weekends, and spent some quality time with family and dear friends. All in all a pretty darn good year, despite various crises. Fun breaks are where it’s at.

update – reconstruction rocks :)

Amya — Wed, 01 Sep 2010 15:55:42 +0000

Quick update – still here, had reconstruction and am SO happy I did it. I just hadn’t realized how much it fundamentally distressed me to look down and see a prosthesis and not cleavage. So now I have cleavage. And a flatter tummy, thanks to the tummy tuck. Also, 30 inches or so of scars, but it’s all dealable. Funny the deals we’re willing to make to feel whole. Which is the most important part. I’m exercising more than I have in years, and feel great.

arimidex meltdown

Amya — Mon, 19 Apr 2010 23:17:10 +0000

Took 5 arimidex pills over 2 weeks. (Was working up to the normal 1/day). Walloped by the joint pain. A shocking amount of discomfort for such little pills. Plan is to switch to aromasin. Here’s hoping that works, because it’s my last aromatase inhibitor to try. Fingers crossed.

catkins

Amya — Fri, 22 Jan 2010 08:05:08 +0000

All of a sudden there are catkins on the trees here. And little green shoots. And a little bit more light each day. Almost 3 yrs out from diagnosis, and life is pretty darn good. I am so grateful. So far, so good. Oh, and bone scan on the last day of 09? All clear! Pretty darn happy here.

progress

Amya — Fri, 06 Nov 2009 07:21:53 +0000

The weight loss ticker at the right is malfunctioning, but I just had to share: I just weighed in at night at the same morning weight I had last week. And my night weight is 2 – 3 lbs heavier than my morning weight, which means that the 2 lb weight loss from last week is sticking. My goal was only 1 – 1.5 lbs per week, but it seems to be going faster than that. I’ll take it!

My daily plate

Amya — Fri, 30 Oct 2009 06:35:58 +0000

Am really thankful for the LiveStrong Foundation’s “My Daily Plate” nutrient counter: today I had 1530 calories, and 51 grams of fat. And that was a day with what I felt like was a lot of food. Was bummed that there was dairy in my chicken tandoori. And who knew that the salt content of prawns was sky high? Overall, digestion felt pretty good though. Onwards.

uphill

Amya — Tue, 27 Oct 2009 06:36:59 +0000

It’s time to lose the 25+ lbs that packed on during radiation. Hence the weight loss ticker on the right. First step: accurate scale (done). Second step: athletic shoes.

a love letter to my liver (or, fatty liver after breast cancer treatment)

Amya — Sun, 25 Oct 2009 14:15:59 +0000

Oh liver, why so gray? The other organs bounce bright white light around the C/T screen, but you, you sit there with fat throughout, listless. Dull and aching. Is it because you miss your friend estradiol? Was it the short dance with tamoxifen?

“Kidneys, heart, pancreas — all beautiful,” the radiologist said. I want you to be beautiful too, to shine.

What would make you happier? Regenerate? A year ago you were fighting a benign tumor, now gone. But this, this new state of grayness, not good my friend, not good.

So here’s what I promise you: canteens of clear water. Exercise that makes the blood sing. Fish oils. The lecithin I crave (those “little nuts that taste like butter”). More of the fruits and vegies that make everything better. Fatty foods, eschewed. Dairy, already gone. Sylmarin, if it will help. Astragalus, the same. But my dear, I have to ask – the fear-assuaging zoladex and femara, do they too have to go?

bart saga part 4

Amya — Fri, 23 Oct 2009 07:12:49 +0000

So apparently the note in the file re: family history of ovarian cancer was “either uterine or ovarian cancer” which is why it wasn’t reported to Myriad. So, off to talk to family! In a way, it’s a big relief….maybe there isn’t a history of ovarian cancer, wouldn’t that be nice?

the brca BART saga, continued

Amya — Thu, 22 Oct 2009 07:17:14 +0000

So, I contacted Myriad to actually get the criteria for the BART, and this time was told that I would need two relatives with breast cancer under age 50 or ovarian cancer at any age. My response: Check! Got those.My aunt had breast cancer at 38 and my great aunt had ovarian cancer. The other requirements were that they be on the same side of the family – check. And at least one of them has to be a first or second degree relative – again, check.

However, Myriad had no info. in my file about the ovarian cancer, which is why they didn’t perform the BART automatically as part of the BRCA test in 2007.

This despite the fact that my great aunt’s ovarian cancer was in my genetic pedigree chart in 2004. Sigh…..why that info wasn’t conveyed to Myriad I don’t know. Or perhaps it was? Have to hear all sides of the story first.

So here we go again, another round of questions and chasing down a corrected paper trail. Who knows, maybe I’ll get free BART testing out of it, as it should have been done in 2007 as part of the BRCA test.

Am thinking of making a list of all the cancers as clearly the pedigree chart is either hard to read or it just doesn’t get read. I can read it, but then I know the story. But either way, it’s complicated, and a cheat sheet will hopefully result in fewer mistakes, as I have to give the history over and over again with every new scan, mammogram etc.

Sometimes I wish my self-advocacy gene didn’t kick into such full gear, with such a steel trap for critical details. It causes me headaches. Borrowing trouble, except that I can’t stand to have my head in the sand. Scratchy.

The implication of all this, just so you all know the bottom line: if for some remote reason the BART test does return BRCA positive, that increases the risks of breast/ovarian cancer by something like 60%. Yikes. So some choose double mastectomy, hysterectomy and oopherectomy as soon as they know and can do it.

Deep breaths – I’m going to assume that this will all turn out well. Cross that bridge when it comes. In the meantime, fight for the right to have bridges.