Tuesday, August 4, 2015

The Inner Dialogue

Still no news on the BRCA testing front. Truthfully, I haven't really thought about it much since that appointment back in May. It's August now, so I expect I will hear something soon, but Canadian health care being what it is, perhaps I should lower my expectations.

I'm coming up on my four year cansiversary. I've been thinking when I finally get to five I might throw a party. This idea causes me stress, but not cancer stress, mostly just party planning stress. Still, it will be quite the milestone. One, early on, I wasn't sure I'd meet.

I don't often think about the early days of my diagnosis, when all we knew was that I had cancer but we didn't know size or stage or any of that. I remember wondering just how much time I had, in a months and years sort of way. Would I see my sister have children? Would I make it through our three year posting in Korea?

These days I'm much less consumed by time, and how much of it I may have left.  I attribute much of that to my new best friend Effexor. But I've also been working on trying not to freak out over every ache and pain. And on trying to be present and grateful for here and now.

I was laying in the grass a few days ago, with both of my dogs a few inches from me, watching whisps of clouds roll past me on a crisp blue sky, and I was so grateful. Gaterful for the day, and the sun, and the air, and my dogs, and my husband, and our families, and my life. I was so grateful for that moment, in that moment. And it was wonderful.

This is a shift. It used to be when I has these sorts of "out of body" experiences, where I became acutely aware of my surroundings, all I could hear was a voice saying "you had cancer, that really happened, bad things happen, this could all just go away." I didn't realize it until now, but that voice has been replaced, at least some of the time. I have a new voice now, that isn't talking about an end. She is telling a story. The story of me, which includes a bit about cancer. But she isn't talking of my impending doom. She whispers about gratitude, and speaks with awe about the beauty of this place. She tells me to be grateful for the day, because it is a gift, cliched as that may be. I'm trying to make more space for that voice to whisper about gratitutde, so she can contine to overpower the voice that whispers about death.    

Saturday, May 30, 2015

BRCA Testing - Part 1

I had my consult a few weeks back with the geneticist. It was super interesting, at least to me. We went over my family tree and she said although there is no real obvious evidence of a BRCA mutation, I also have a very small family with not a lot of ladies, which makes it harder to definitely rule something like that out. She also said that getting breast cancer anytime before 35 is a HUGE RED FLAG in geneticist land. So they've opted to test my blood.

The first stage is looking for the BRCA I or II mutation. If I don't have that, they will ask the Government of Ontario for special permission to have my blood sent to the US, where they will test it for all of the other genetic mutations they know about (but know much less about).

If I am positive for any BRCA mutation, then one of my parents will have to be tested, so we know which line of the family carries the mutation (and who I can hold responsible for this!) and anyone affected on that line will have the choice to be tested. I find it fascinating to know all the stuff we've managed to learn about the human body and the immense amount of stuff we still don't know.

If I am positive, they said I can still keep my boobs. That one is up to me. I think I will likely lop them off if I am, but we'll cross that bridge when we get to it. Removing the boobs means a significant drop in annual testing. If I keep them, it's mammograms every 6 months and yearly breast MRIs. Testing times are stressful, so it would be nice to avoid them. If I am positive, they also strongly recommend going the way of the Jolie and tossing out those pesky ovaries. I can apparently wait until my 40s to do that but I have questions about that, mostly because I'm not so secure in waiting when my breast cancer decided to show up well before anyone is even thinking it's a possibility. Could my ovaries pull that same crap?

I can see how this would be scary if you hadn't already had cancer. The stats for the likelihood of getting breast and/or ovarian cancer if you have these genes are staggering. Perhaps as high as 85% for breast cancer and 60% for ovarian. Scary stuff! Having already had one of these diseases I'm less worried. Though she did explain the mutation, and the mechanism by which it makes your odds of getting cancer higher, and that part was still scary - even for someone who's already been there. It makes it sounds like your genes are just a ticking time bomb. And the thing about genes is, you're sort of stuck with them.

Anywhoosters (that is a part of my vocabulary now, thanks to a co-worker), now I'm back in the waiting game. Apparently results should be in in about 3 months. But even if they come back negative, there is more testing to be done. So I guess this is just the beginning.

Thursday, March 12, 2015

Ways in which I might be like Angelina Jolie...

1. I have a very attractive husband (but he's no Brad Pitt).

2. I have run around the temples of Angor Wat (though I was not shooting Tomb Raider).

3. I have five tattoos (she probably has more, and only one of mine is non-cancer related).

4. I'm beloved the world over (at least those who know me around the world, a smaller number to be sure).

5. I might have the BCRA gene. She definitely does.

A letter I've been waiting quite awhile for finally arrived in the mail this week. After being referred for genetic testing back on September 3, 2013 I've finally made it to the top of the pile. Yep, I get to find out soon(ish) if I'm a mutant. I don't have an actual appointment until May but I did get to fill out a questionnaire that was several pages long and all about every one in my family who has had cancer.

Turns out there are a few. Especially in my maternal grandmother's family. But no breast cancer. I am the lucky number one on that front.

Actually, I don't really think I have the BCRA gene. I think I'm just unlucky. But other female members of my family can't be tested for the gene until I have been and it's been confirmed that I am indeed a carrier. And as you will recall, I am in the "knowing is better" school of thought. If I do have the gene, I'm inclined to think the mutation starts with me, though I must also acknowledge I am not a geneticist. I don't think Bio 311 - Genetics qualifies me to make any such judgements.

I'm not worried about the results because I've already lived through breast cancer. It would suck more for my sister, mom, aunt, and niece who would then all likely have to be tested. If I am a BRCA carrier I may consider a prophylactic double mastectomy and maybe even an oophorectomy, though that one seems super crappy since you basically go in to immediate menopause. But still better than ovarian cancer. However, I'm not worrying about any of this until I have an actual confirmation, which will apparently come about 8-9 months after my consult. It's very unlike me to not worry, so a round of applause if you will.

If you're keeping track, I will know my BRCA status approximately 2.5 years after the initial request was made to have me tested. Which is really the thing I'm most appalled by. Not that I may be carrying a potentially deadly mutation, but that it will have taken me 2.5 years to find out IF I'm carrying a potentially deadly mutation. And people wonder why I have so little faith in the Canadian medical system (which I was once a staunch defender of).