Donated

Blood drawn. Details later.

Why Now?

I'm young. I'm 29 years old, to be precise, though 30 is not too far off. Some of the cancer risk calculators don't even account for subjects this young. My ob/gyn advised me a couple of years ago not to bother getting tested until I was certain I was done having kids, because it's not like we were going to take any serious measures (prophylactic surgery, tamoxifen) when I was also trying to get pregnant/pregnant/nursing.

Let me tell you about my friend "Rowena."

Rowena is just a few years older than I am. When Rowena was about ten years old, her mother died of breast cancer. Many years later, Rowena decided she wanted a little more certainty in her life, and so about a year ago she set herself up for some genetic counseling and testing. Turns out she has a BRCA1 mutation. The cancer risk people recommended a double mastectomy to reduce the breast cancer risk, and oral contraceptives to lower the ovarian cancer risk. "We scanned you and your opvaries are completely clean. We don't take ovaries out of women your age - the drawbacks outweigh the benefits. Let's talk about it again when you're over 40."

So Rowena got her boobs chopped off fairly soon thereafter. Four months later, she developed some odd abdominal pain. Shrugged it off for a day or two, and then went to the ER to rule out appendicitis. Nobody discovered anything to be concerned about. I could kick myself for not making the connection that I should have seen. A few weeks later, she had more abdominal twinges, pretty low down. Maybe a UTI? Doctor ordered a pelvic ultrasound. And then a CT scan.

Guess who had cancer in both her ovaries?

It wasn't yet at the "go get your affairs in order" stage, but this was no Stage 1A, either. Through some combination of excellent doctors, effective treatments, and a good dose of luck, Rowena beat back the cancer enough to turn up with a dwindlingly low CA-125 count and clean CT scan six months later.

This is what scared me into making my appointment. As these things go, Rowena was incredibly lucky. And she did everything right, following the advice of some of the best medical experts out there. But that bit about not worryign about ovarian cancer when you're young? I don't care so much what the statistics say; I know what my friend's reality is.

I know what it means to have your ovaries out at age 30. Increased lifetime risk of heart disease and osteoporosis. Surgical menopause, which is even crappier than the natural route. Definitely no benefit to your sex life. Oh, and no guarantee that you won't get ovarian-type cancer, just as there's no guarantee that a double mastectomy will prevent breast cancer. But the risk drops a whole awful lot.

I could stay on birth control for another decade, give those natural hormones from my ovaries a chance to do whatever good they can do. But I don't think I could look myself in the mirror if cancer rears its head even one day before my 40th birthday, and I didn't do whatever I could to stop it. I'm pretty sure the counselor tomorrow, and the doctor I'll see after I get my test results (if I get test results), will advise against oopherectomy at my age. They will probably have good reasons, and many statistics to back them up. Maybe they'll even change my mind, but it's going to take a lot to talk me out of this.

The emotional mind, the rational mind. Which wins? Which should?

Shrodinger Again

If you haven't been here in a while READ THIS FIRST and proceed with that post in mind. Thanks.

-=-

So.

Appointment tomorrow. I haven't been getting much sleep. Those who know me IRL would not think that out of the ordinary at all, since I do some of my best work (and cooking) at 3 AM. And, yes, some of those sleepless nights could be attributed to deadlines and whatnot. But my mind's also been turning this cancer-risk thing over and over and over, looking for a trapdoor exit.

See, I'm afraid that they won't let me get tested.

Here's the reasoning: There are three (very general) possible genetic scenarios at play. Scenario 1: One or both parents have a BRCA mutation; I test positive for that mutation; I'm considered high-risk for the nasty sorts of rapidly advancing cancers that come with it. Scenario 2: One or both parents have a BRCA mutation; I test negative for that mutation; woo-hoo I've dodged the bullet and con probably be considered about normal-risk. Scenario 3: Neither parent had a known BRCA mutation; I test negative for known mutations; it is entirely possible that I inherited some other genetic predisposition to cancer nastiness and therefore I'm high-risk anyway.

If you clicked on the scenario links, you probably noticed that 2 and 3 led to the same question. And if you've been paying attention in class, you probably noticed that I have not said anything about whether my parents ever had any BRCA testing.

That's because they didn't.

My mom gets a pass on this one. She was diagnosed with ovarian cancer in 1993 and died in 1994. The BRCA1 mutation was not isolated until 1994, and its relatively high presence in the Ashkenazi Jewish population was not discovered (or made public, at least) until 1995 (also the year that BRCA2 was isolated).

My father probably also gets a pass, though a good doctor who was familiar with genetic cancer risk screening and had full knowledge of the family tree and medical history probably shoudl have suggested testing. Sister with breast cancer + pancreatic cancer as potential manifestation of BRCA2 mutation + two daughters who'd benefit from this information = probable screening recommendation. The problem is that my father was so secretive and cagey about, well, everything that I doubt there was ever any medical professional who actually knew all of those facts. And I don't think it ever would have occurred to my dad to consider testing; setting aside his overblown ego and machissmo, he probably had no idea about the pancreatic cancer/BRCA2 connection. I certainly didn't until a few months ago.

The cousin who helped me piece together our (paternal) family medical history does not know whether our aunt with breast cancer had BRCA screening, and it is unlikely that we will find out. I suspect she did not.

So it all boils down to two possible scenarios for me if I get tested. Positive? High risk for BRCA1- or BRCA2-specific nasty cancers. Negative? Considered high risk for ovarian, breast, and related cancers at least, because there could be some other genetic compenent and I have PCOS besides. I mean, sure, I guess I could be negative with two positive parents, dodging a major bullet, but we'll never know. So they may recommend against testing, but for some unidentifiable reason, that just makes me very nervous.

I don't know why. Shrodinger's cat is dead either way.

Warming Up

If you haven't been here in a while READ THIS FIRST and proceed with that post in mind. Thanks.

-=-

Still with me? Excellent. Long time, no see. How have you been? Me? Oh, I'm fine. Ezra's fine. Boy and Girl are almost three years old and just wonderful. Except when they make me want to run up to the roof and start chucking electronics down at the street like a drunk frat boy (only with somewhat less glee) - but that's parenthood, right? It's what I signed up for, and I really wouldn't trade it for anything. Not even sleep. Clearly not sleep, since I'm writing this at 1 AM.

The blog starting up again? Oh, um...no real reason. It's just that, next week? I have this appointment, see? With a genetic counselor? Yeah, we're going to go over that big family medical history I just mailed off a few days ago - the one where it says that my parents died of icky, hard-to-detect cancers (ovarian and pancreatic, I'll let you guess who had which) at relatively young ages. Lung cancer nabbed my non-smoking maternal grandmother; though, to be fair, Grandpa was a chain-smoker for many years. Ooooh, plus a (paternal) aunt with breast cancer (in remission!), just for kicks.

The counselor and Ezra and I - we're going to talk and talk and talk and have a grand ole time for an hour or two, after which, if I'm really lucky, she'll recommend that I see a vampire get tested for BRCA1 and BRCA2 mutations. Because, hey, did you know that pancreatic cancer risk goes up with some BRCA2 mutations? Thanks, Dad! (Hey, I totally gave that one away, didn't I?)

The medical history was loads of fun to fill out, what with the dead parents and all. There goes a crucial source of information. But I did my best. One sister, not even of legal age to buy cigarettes - check. Mom's side was easy. I know how and when her parents died (ripe old ages; the aforementioned lung cancer, and a broken heart). One uncle, two cousins, no health issues I've heard of, and I'd probably have heard.

For the (much larger) remainder...I can never keep track of which of my dad's siblings is speaking to which others, and of course my dad was part of the drama, so even if he were alive I wouldn't get a straight answer about some of my cousins if I begged. Did I mention there's a language barrier? There's a language barrier. Thanks to Facebook (and one cousin in particular) I was able to at least get everyone's approximate birth years and confirm that nobody had died when I wasn't paying attention. Whew.

Family history was fun. But the truly exciting part was all the personal medical history. Age at first menstruation? Hell, I could tell you the day! Hormonal birth control use? My accounting was rather freakishly detailed. (Four different combination oral contraceptives, only one of which I could not name, plus NuvaRing and the minipill. I was able to nail start and end dates to within a month.) Likewise with the history of fertility medication and treatments.

Periods regular or irregular? Duh. Approximate length of cycle? Hi, I think I just said "irregular." As in highly. But for good measure I wrote in, "intermittent, >45 days."

Ever diagnosed with breast cancer? Nope! Skip about a dozen pages! Ever diagnosed with ovarian cancer? Nope! Skip...about two pages. Well, that wasn't nearly as satisfying.

This paperwork was all mailed to me in August. And I actually had filled most of it out by mid-October...and then set it down on a corner of my (black hole of a) desk, awaiting a few final details from my cousin. And put off filling those in and mailing it off. And put it off some more. And then put it off again, because if I haven't mailed it then clearly some other crucial piece of information is going to land in my lap, something that will magically make this whole venture unnecessary, and I won't have to mail it after all.

And then December 1 rolled around, and I realized that they might actually want this stuff rather soon, as the appointment was approaching and they need to run statistical analyses first and all that. So I resolved to put it all together and get it into the mail that very day. Or at least that very week. And by the weekend I decided that maybe I should actually really mail it. And then on Tuesday I decided that I was for-real going to find it and mail it by the next morning. Really.

And then...yup, couldn't find it. At all. I spent a good 24 hours in denial, and then another half-day or so talking myself into being able to own up to my irresponsibility (okay, so really a few good friends gently talked me into that) - and within an hour of calling the appropriate admin, I had shiny blank docs emailed to me. Email! What a world!

I filled all the paperwork out again that very night - by which I mean, at about 3 AM Friday. You know, the Friday ten days after I resolved to mail this stuff in, and less than two weeks before my appointment. But this time it actually got mailed. Promise.

I guess that's enough to digest at this hour. Because clearly you are all reading within moments of this post going up. Stay tuned to this channel - more fun and exciting background to come!

Breaking Radio Silence

I may have to start using this blog again...but not necessarily for the reasons most infertility blogs get revived.

There's a problem, though. Several of my readers are people who know me and my family personally. With very few exceptions, I don't want these readers to see what I'll be posting here.

I could just go and start a new blog - but the same people would eventually link to me, and the same readers would eventually find me, and with all the relevant background information I have to post it will be pretty obvious who I am.

I could password-protect this blog - but I want to leave it open to random readers, people who do not know me and likely will never find out (nor care) who I am.

So instead I think I need to just operate on trust. I am going to trust that people who know me (and, I think, consider me a friend) will respect my request:

If you know me in person, if you would recognize me walking down the street, if you could name either of my children or either of my parents - if any of those apply to you - please stop reading.

Anyone who is an exception to this rule will be contacted personally. If you are uncertain whether this request applies to you, feel free to email and ask. I will answer directly.

If you don't feel you can respect this request...well, I can't help that. But at least have the consideration to never comment, never discuss what you read here with anyone else who knows me, and never let on that you've been reading. Tough challenge, eh? Probably easier to just not read.

I'll give this a few days to settle, I think. I have other things to write anyway.

The Time Has Come

The time is now
Faithful blog readers
Will you please go now!

To where? you may ask. That's the problem: I don't want to post a link. I have had a blog under my real name for quite some time now. While I am relatively open about my infertility in person, I'd rather it not be too obvious to anyone punching my (real) name into Google. So here's the deal:

If you know who I am, or you think you know who I am, you should know where to look for my blog. (Or perhaps you've already started reading it again.)

If you don't know who I am, but have been reading Ovaries On Strike for a while and have commented and/or emailed me in the past, drop me an email and ask for a link. I'll probably pass it on to everyone who asks in this category, but I'm sure there's some potential exception I can't think of right now. I will (try to) check this account daily for the next week or so, and at least a few times a week for the next month or two. I hope that's enough.

If you have been reading Ovaries on Strike but never commented or emailed, or if you're just finding this blog now: sorry, you're out of luck. If you happen to stumble across my other blog, you'll probably be able to figure out that it's me; there are certainly enough inadvertent clues around here. And if not...oh well. I'm sorry, but I have to draw the line somewhere, and passing around the link to everyone who asks is just a little too close to posting a link for my comfort.

What about Ovaries On Strike? Robbie's going to go quiet for a while. You may want to subscribe to the feed, though. There's a good chance we'll be trying for a third child (or a third and fourth...they do come in pairs, right?) some day, and I may need a safe(r) space to talk about that.

No place like home, they say.

Here, Happy, Healthy

My children will be eight weeks old tomorrow. I've posted here only once since they've been born. I so desperately want to keep this blog going (or to start a new one, a la persephone, but I'm not quite sure when to post. Or, really, what to post. My kids need online aliases, don't they? Do I keep my name? I'm not really "Barren" any more. Do I stick to parenting posts, with a bit of (in)fertility commentary on the side? Should I fill in other areas of my life?

I used to blog elsewhere online nder my real name. I guess that technically that blog is still alive, but due to a confluence of circumstances I found myself not posting anything of substance for months on end. I didn't want to bring up my infertility, and then I didn't want to mention my pregnancy. The terms of my employment precluded me from discussing anything even vaguely political. I couldn't talk about this major stressor in my life, out of concern for other peoples' privacy. And I still can't blog about the even greater stress that arose when that was "over," even though some of you know bits and pieces of it.

What to do? I mean, after I spend the next few minutes (while the babies are still napping) emptying the dishwasher and folding laundry. Because huting through a laundry basket for a clean onesie at 3:27 AM is not our idea of fun.

Here and Happy

How could I be anything else?

My children - CHILDREN! - are healthy and beautiful and loving the world. We all came home from the hospital on time. Breastfeeding has been going smoothly, with only a little hiccup at first for my son. And Ezra is just over-the-moon in love with our babies.

I would write more - and I will, soon (relatively speaking) - but at the moment I have a snuggly little boy curled up on my chest and it's making typing a little difficult. Thank you all for your congratulations and well wishes on persephone's post (and thank you seph for posting!). May you all be blessed with the fulfillment of your wishes, and soon.

mazal tov! mazal tov!

Hi everyone, it's Persephone! I'm lucky enough to be the one to share the joyful news: Robbie and Ezra's babies are here! On Monday night, their son (6lbs 3oz, 19 inches) and daughter (5lbs 13oz, 18.5 inches) came into the world. Just a glimpse of their beautiful little noses and cheeks has me all teary.

Robbie must be too exhausted to write, because I'm told she has internet access and yet I still managed to beat her to posting this. But hopefully she's not too tired to read! Break out the balloons and the tissues, the love and the congratulations, and let her know you were here.