April 23, 2013

rainy with a chance of baby: my TEDxCoMo talk

Let's end the silent struggle.

"It's a surprisingly little known fact: 15% of couples are infertile, and 25-40% of detected pregnancies are miscarried. But no one talks about these things. Until now. In this talk, 3-time cancer survivor Kara DeFrias shares her story of love, loss, and the struggles that go along with trying to conceive a child. And how a positive attitude (and sometimes wildly inappropriate humor) got her through it all." - synopsis from TEDx YouTube channel



Transcript

My original life to-do list sounded something like this: go to college, find a job, move out of New Jersey, get married, and have kids. I breezed through most of this  graduated from a well respected liberal arts college with a degree in English and theatre, found work as a training analyst, moved to San Diego, and married a guy I’d met on a plane.

The having kids part, though, never quite played out the way it does in movies, where, at the mere drop of a hat or quick sneeze, you get pregnant. I mean, let’s face it: as women, we spend our 20s praying we get our period, then we spend our 30s hoping we don’t.

After a few months of not getting pregnant, I went to the doctor to find out what was going on, and when I showed up, are you kidding me? It’s called an infertility clinic?! Infertility. Really, people? We already know we’re having issues. Couldn’t we at least be aspirational and call it a Fertility Clinic?

The doctor ran some tests, and diagnosed me with Polycystic Ovary Syndrome, or PCOS, which affects about 1 in 10 women of childbearing age. It’s a hormonal imbalance which makes your periods all wonky and makes it difficult to get pregnant and — BONUS — gives you unwanted hair in really sexy places like your breasts and chin.

Awesome.

This was all new to me, so I did what most folks do: I googled it. Which, depending on the search results, can either the best, or the worst, thing you can do. But I also did what comes naturally: I wrote about it.

I initially started my blog to keep track of my doctor’s visits, my health, and my state of mind. It was private, nothing much more than a journal to keep track of everything. I didn’t talk about it with anyone, initially, because I felt embarrassed and betrayed that my body couldn’t do the one thing I wanted it to do: have a baby. The worst feeling in the world is the feeling of isolation.

What I discovered, though, was as I slowly began telling my friends about what I was going through, so many came out of the woodwork saying they were having issues trying to have kids as well! I was blown away by how many women went through similar experiences. Because right up until the minute I told them about my story, I had no idea (none!) that they’d had problems, too. The most common, it seemed, was miscarriages, but there were a host of others, as well.

Then I got mad that we, as women, are conditioned to "not talk about these things." And that's crap! These are exactly the types of things we should be talking to each other about! So I made the decision to make my very private blog...public. Of course, I changed the names to protect the innocent from the litigious.

By telling my story, in this way, if someone else was going through what I went through and looked online, they’d know they're weren’t alone. I also wanted people to feel empowered to be able talk about these things, so they wouldn’t feel that sense of isolation.

So CasaDeFrias.com was born.

The struggles continued, and I began to ponder whether I wanted to continue with the regiment of dyes and pills that went along with Western Medicine. For years I’d taken a holistic approach to my health, including going to a chiropractor and massage therapist. So it didn’t seem at all strange to me when, by sheer providence, acupuncture came up as an option.

Here’s how it played out: my friend Mary was visiting San Diego, and got a foot massage while she was here. She loved it so much, she gave me a gift certificate to the place. (Yes, I have nice friends.) When I went there, the director told me they do acupuncture, too. I shared what was going on and that I was open to Eastern Medicine.

I began treatments the next week, focusing on getting my menstrual cycle back to normal. Soon enough, things were moving, literally, and I started bleeding. On my own. For the first time in years. Things were moving so much, though, that later that week, I passed a tissue mass.

I won’t gross you out with the picture, but know I actually did take one. Next to pencil, of course, to show scale. And then placed it in a pill jar filled with water. What? My mom’s a nurse.

I gotta admit, the thought of cancer crossed my mind. As a malignant melanoma survivor, who’d had a mole removed years ago only to find out it was cancer, why wouldn’t it? This was different, though...unexpected...right in the middle of trying to have kids. Who I wanted, so very desperately. You know, change poopie diapers. Telling them they're making all the wrong decisions.

But cancer stole that from me.

At age 34, my OB-GYN diagnosed me with uterine cancer, and I had a full hysterectomy with bilateral salpingo-oophorectomy, which, in Plain English, means they took out everything, including the kitchen sink -- my uterus, my fallopian tubes, and my ovaries. As I sat in my doctor’s office, I took comfort in two things: one, they were pretty sure it was stage 1, and two, the stirrups on the table were covered with those very grandmotherly-like flowered oven mitts, which made me laugh.

While the doctors wanted to schedule the hysterectomy right away, my motherly instinct kicked in and I told them I wanted to save my eggs first. I felt alone, again, even though I had supportive friends and family surrounding me. I wanted to talk to someone going through what I was. Who could tell me what it’s going to be like. That led me to, of course, google it.

You think I would’ve learned the first time.

I found stats. And graphs. And figures. And papers. And photos. Ooph, the photos. I’m not sure I needed to see the insides of so many people. But no stories. At least, none like mine: early 30s. Cancer. Hysterectomy. IVF. A little here and there, but none quite exactly. So I kept writing.

There was so much to learn, including a world of new terminology. IVF stands for in-vitro fertilization, and it’s a method for extracting the eggs from the ovaries, fertilizing them with sperm, and letting them grow a little. In most cases, they end up back where they started. In my case, they were destined to end up in someone else’s belly: a surrogate’s. Our own Easy Bake Oven, if you will.

In industry lingo, I'm known as a "fertility preservation patient." Now that's hot. It means that, in the face of losing the capacity to reproduce, you do what you can to preserve your ability to have kids. For me, that desire was instinctive. Many insurance carriers, including mine, don’t cover fertility preservation — even in the face of cancer  so there were those bills, which can run into the tens of thousands, to contend with.

I ended up at UC San Diego’s reproductive center, and they were just so amazing. The doctors cut their fees. The drug companies donated much of the necessary medicine. We didn’t have much time. We had to get the eggs before the hysterectomy.

IVF consisted of 2 weeks of taking birth control pills, then 2 weeks of "hey eggs, HAPPEN" pills, plus a whole host of needles along the way! My friend Liz helped give me my first injection, at a Residence Inn in Austin, TX, because, as I explained to my doctors, there was no way I was missing my first SXSW just because of a pesky case of cancer.

There were a few occasions, though, when the general suckiness of it all set in for a moment.

In the days leading up to the egg harvesting, the doctors did a blood draw every day to check my levels. Every second or third day, they did a transvaginal ultrasound to check the follicle size (imagine them to be like Goldilocks; we don't want them too big or too small, we want them just right). On the last day, when the doctor inserted the probe, my ovaries appeared on the ultrasound screen.

And in that moment, it hit me that I'd never be able to see my baby in there, or on that screen. Because my uterus simply wouldn’t be there. My lip began to quiver, and quivering lip begat teary eyes, which begat water pouring down my face. I was sad for what I was losing... sad for not being able to carry my child... sad for my body's rebellious nature against nature.

Rainy with a chance of baby, if there was ever such a forecast.

We ended up, when all was said and done, with 6 embroyos being stored on ice. Or as I like to call them: my kidscicles. My friend Coreen likes to say: "Always start from hope." While, for now, I’m in a holding pattern, the hope is to one day find a surrogate to carry my children. Not all 6 of them at once, mind you, I’m not a walking reality show!

And don’t get me wrong, there are a lot of positives that came out of this experience, and so much to be grateful for:
  • I coordinated with my doctors and two universities so that my ovaries could go to research studies.
  • I’ve also got all this free space in my bathroom cabinet, a now-empty shelf that used to be occupied by tampons and pads.
  • The lack of worry around getting a period.
  • And probably the best one of all: when it comes to menopause, I skipped the hot flashes. Jackpot!
  • And to this day, I’m grateful to my acupuncturist Christian and my friend Mary for saving my life, since uterine cancer is hard to detect.
A lot’s happened in the past few years, and I learned so much about myself, and the life I want to live. I continue to say yes to all the opportunities that come my way, whether it’s serving my country as a White House Presidential Innovation Fellow, or being at the final space shuttle launch...because being cancer-free again just proves that life’s just too short to not embrace it fully.

There are a lot of women like me out there going through what I did. But we don't talk about it, because it supposedly only happens to older women, or other women, or somebody else. It’s this secret society that no one wants to be a part of, and nobody talks about. Which is why I wrote about it, and why I’m here talking to you. We absolutely should be talking about these things, and not just fertility struggles, but other issues that are historically taboo.

15% of couples are infertile, and 25-40% of detected pregnancies are miscarried. By talking about them, whether online or in person, we shatter the stigma and create a system of support, a feedback loop if you will, for each other. There are communities, counselors, and your friends and family.

And more celebrities are starting to talk openly about it, like Elizabeth Banks and Celine Dion, which is great because every time they share, it makes it more relatable and makes this world a little less small. I got an email from a guy who said he was frustrated that people often overlook the dads, but after reading my story he was inspired to start a support group for dads who have gone through miscarriages.

Turns out, trying to have kids is hard. For a lot of us.

I’d like to hope it would suck... a little less...if we could just give ourselves permission to talk to each other about it.

__________________________________
Learn more:
What is infertility?
About National Infertility Awareness Week

6 comments:

Karl Richter said...

Atta girl, I find putting it all out there not only helps you, it helps others.

You continue to insprire! Keep up the good work!!

Babydreams2011 said...

You are SO AWESOME! You continue to inspire me! xoxo

Em said...

Okay, I have so much to say about this post that I have to take a moment to collect my thoughts and then number them. Hope that's okay.

1. You're an exceptional writer. I've been reading TONS of NIAW posts, and they're all good...like really good...but this is one of my faves.

2. I too have PCOS. I totally get the hair on your boobs and chin thing. Thank God for tweezers.

3. I passed a pretty big chunk of tissue when I was in college (anovulatory and not sexually active). It was big, like half the size of my palm with veins in it and everything (my mom's a nurse too). That was years ago, so I know it wasn't cancer, but I just remembered it now and it's freaking me out a little bit.

4. Your docs reduced their fees and your drug company donated some of the drugs? How did you make that happen? Was it just a huge miracle or did you advocate for yourself like crazy? I'm guessing that your battle with cancer had something to do with it but I'm guessing they see "fertility preservation patients" more often than we'd think. Do they do that for many people in your situation? I sure hope so. I'm astonished by this and it's kind of renewing my hope for humanity.

5. Most importantly, I'm so sorry for your struggle...for all aspects of it from straight-up infertility to cancer to everything in between. You are a warrior in the truest sense of the word. My heart broke for you when I read the part about you looking at the ultrasound screen, knowing that you would never see a baby on a screen like that. I'm so sorry for all that you've lost. I certainly hope that what you gain throughout this process overshadows those losses even if it doesn't take them away. Thank you for using your cancer and your infertility rather than letting it use you. Thank you for speaking out because you're exactly right - these things need to be discussed. I'm so glad that I get to discuss them with you and the rest of these beautiful, powerful, courageous women that surround us in our clinics and in the blogosphere.

6. I love Celine Dion.

(-:

CaliforniaKara said...

Thanks, Karl, nice to "hear" from you. :)

CaliforniaKara said...

Right back atcha, T. ;)

CaliforniaKara said...

How very kind of you to say those things, Em. I'm just a lucky girl, and I think the cancer and pending hysterectomy, coupled with the moon and stars aligning, had something to do with the drug companies being so very generous.