Friday, April 13, 2012

Well That's Okay Then

Yesterday I was standing in my kitchen slicing a cantaloupe. My sister texted me: "Didn't get a chance to tell you...going in now to hear results of BRCA test. Appt in 20 minutes. Will keep you posted, natch."

The BRCA test is a genetic test that determines if you have one of the recognized harmful mutations in the BRCA1 or BRCA2 genes, mutations that are known to be linked to a greatly, greatly increased chance of developing breast or ovarian cancer. I think that with a BRCA mutation, a woman's lifetime risk of developing breast cancer is somewhere in the range of 65-85%.

When I was diagnosed, with no history of breast cancer in our family, I didn't have the BRCA test because nobody thought it was a thing. But then when Amy was diagnosed, obviously her docs were like, "Okay, let's check into it."

I got her text and suddenly the reality hit me of what a positive BRCA result would mean: more surgery, more reconstruction, goodbye ovaries. And then, when that initial flurry of crap was past, a difficult and murky issue for the family going forward. What would this mean for our girls?

Before, I had not really thought a BRCA mutation was a possibility. Or, more truly, I hadn't yet gotten as far as considering it. But when she sent me that message, I considered it. I thought about all of it, all at once, for Amy and for me. In my mind's eye, I traced our twin paths on opposite sides of the globe, back to the surgeon, back to the plastic surgeon, long meetings with the oncologists, trying to understand the data, talking to our kids, laying the groundwork for more complex talking later. I saw all of it. I stopped slicing the cantaloupe because I couldn't see what was in front of me. People sometimes say, "Oh, I was in a fog," and that's exactly what it was like. I just stood there and leaned against the counter. My feet were stuck to the floor.

I stayed in my kitchen for thirty minutes. I texted Amy a couple of times, knowing she was probably in her meeting. The feeling of suspense was a little bit dreadful. And one thought I had, as I was waiting, was, "Okay, for this round of surgeries, nobody will be commenting on how strong and upbeat I am, because I am going to just take to bed and refuse to talk about it." Like, I just didn't want to give the whole issue the space of one word. Just, no.

Then she texted me back with the good news.

When I read that, I could breathe again and I felt so, so glad. So glad that we can both just keep moving forward. I had felt, as I was standing there, that all of the good things I've done for my health over the past two years--weight loss, better food, better and more exercise--I felt that if we had this harmful gene mutation, that somehow all that good stuff would be rendered null. I know it's not rational. But this bit of good news made me think, "All right, stay the course. The past is past."

Then I got in the car and went to pick up Laura from swimming, relieved. But I felt almost like reality had divided in two while I was waiting for that answer from her. I am sure there is some branch of theoretical physics that would explain this. But I had seen the other future so clearly that it seemed to have its own weight in the universe, somehow and somewhere. In some other world, Amy and I were both starting on those twin paths.

But not in this world. Now, the frustrating thing about genetic testing is that it's not like they've got the genome all figured out. You don't get an "all clear" result. What they tell you is that your gene doesn't resemble any of the variants that they know are linked to disease. But there could be a BRCA3 that nobody knows about yet. There are just too many possibilities.

I don't really know what any of it means, or what this means for why we both got cancer. I'm thinking we'll never have that answer. Or it has to do with some environmental factor in how we grew up, our house? Our town? I think of this as the Haunted Indian Burial Ground theory. Or, as Amy said in jest (?), it was the BPA from all the canned green beans we ate growing up. Then our mom said to shush and that we never ate that many green beans from cans. I'm inclined to think it is just crappy luck.

So that was a good day.


Nina said...

It's the 'many worlds' theory or something. Every possibility exists, a new universe is created for each option whenever there's more than one. Something like that. Glad you had good news in this world!

Keely said...

Well. That IS ok, then. I'm very glad you're in this theoretical universe.

Cassi Renee said...

I am very glad. For you, Amy, and for both your girls.

Elizabeth said...

I know this -- all of it -- in an entirely different context as I've struggled for over seventeen years with my daughter's "seizure disorder of unknown origin." It's the flip side of technology and "knowing," and the wondering never stops as far as I have experienced it, although the quick humored phrases like "crappy luck" suffice much of the time.

I am so glad that this hurdle for you and your sister (and your daughters) is cleared and pray that there will be no more.

Kate said...

My ENT told me to go to the Mayo Clinic website and look into genetic testing for thyroid cancer since my father, brother and sister have it. This is not supposed to be a hereditary cancer, but it sure as hecks feels like it is. i have been wondering about environmental factors as well. Like, we didn't grow up near Three Mile Island or anything, but my sister suspects our family dentist didn't protect us from xray radiation?? We are grasping for straws here, and I am dragging my heels on this testing. So glad about your sister's results. Keep up your great work on the health front!!!

Beth said...

Do you have a cute, short Gwyneth Paltrow haircut in this universe, or the other?

I'm glad you got the news so quickly. I was thinking it would take three weeks or something. And I am glad the news was good!

Steve's mom had breast cancer and then he had testicular cancer at 25, and after his treatment he went into serious cancer researcher mode. He discovered a "cancer cluster" in his hometown, which means there was a statistically significant increase in the disease there, in people his age. He contacted the woman who did the study for CA but there wasn't ever any solid findings about why.

Becky said...

Thanks guys! On the mystery of environmental exposure thing, my mother's doctor told her that the part of Florida we grew up in is called the Cancer Coast. Though I don't think the chamber of commerce will be adopting that slogan anytime soon.

Julie said...

Hi Becky,
I SO get what you went through with the BRCA testing. My husband's family did test positive for their breast cancers so we decided that Mark should be tested too. I remember waiting and waiting for the results and thinking about our daughter and what this might mean for her if Mark had the mutation. He is the only one in the family of 6 children who did not inherit the BRCA2 gene. We are so grateful but it's kind of hard to celebrate when his 5 sibling have it you know? So, we just breathed a sigh of relief and kept on living.
I'm so happy for your family-

Aimee said...

Well, that is a relief. Just...good.

Jenni said...

Such wonderful news. I'm all weepy. Love you guys!

Jen said...

Whew! Good news!

Jane said...

Hallelujah! That is wonderful news.