Archive | September 2013

Starting PGD

Being back in the dreaded Two Week Wait, I thought I’d continue the narrative of my 3 year fertility journey so far.

When last I wrote, I was extolling the virtues of my RE, who persuaded my uber-religious parents to submit their DNA so Kyle and I could do PGD for Fragile X.

To start the process of PGD, my parents + Kyle and I were asked for DNA in two forms: a cheek swab and a blood test.

The cheek swabs were sent to a lab in Michigan for a FOUR MONTH analysis (more waiting! yay!) that resulted in a “probe,” which to the best of my knowledge is a detailed map of certain sections of the X chromosome. The scientists find the FMR1 gene and then record the bigger genetic markers nearby. When the embryos’ DNA samples arrive for comparison, those bigger genetic markers are much easier to spot. I wish I knew more, but this technology is so specialized (and new, 2008) that my doctors don’t really know, either.

The blood test tells us which parent is the Fragile X carrier, how bad their mutation is, and how its severity changed between generations so the lab can extrapolate how it might appear in our kids.

The doctors assumed Mom was the carrier because that’s the way X-linked genetic things usually work, and because:

1) Males are rarely just carriers; they often show signs of Fragile X because they have no 2nd X chromosome to fall back on
2) She had two miscarriages, a common plight for carriers (I remember being at the hospital for one of her D&C’s)
3) She had a cousin who was mentally retarded, indicating potential family history
4) If you can follow me for a sec here, I’m my mom’s only daughter and she was her mom’s only daughter, so if the Fragile X gene were passed down maternally, it makes sense that my mother’s cousin would have it but none of my first cousins would.

A week or so after everyone’s DNA was in, our RE called. “You’re not going to believe this,” she said. “The blood tests came back. It’s your dad!”

It is truly poetic that my dad, who was most against PGD/IVF, wound up being the Fragile X source. After the hair-raising phone call Dr. Avery had with my parents, she was a little entertained, too.

However, I’m glad we didn’t know sooner because things might have turned out differently. In addition to Dr. Avery’s persuasion, I also wonder if Mom quietly begged Dad to cooperate because she felt it was her “fault.” I don’t know if Dad would’ve reached that point on his own, and Mom wouldn’t have had quite the same power.*

Dad’s reaction to the news was, “Well, Mom will be relieved that it’s not her.” And since then, he’s bounced back and forth between apologizing for “giving me bad genes” and giving me his unsolicited adoption research. He also worries that every little shake in his hand is the onset of Fragile X tremor ataxia syndrome, which can appear in male carriers over 50. There’s no doubt he is rattled like the rest of us.

*Speaking up would be a departure for my mother because my parents’ interpersonal dynamic is typical of the strong religious model. Dad Knows Best and Mom spends a lot of energy trying not to rock the boat. Because of that, Mom has developed an annoying habit (ok, “coping mechanism”) of NEVER EXPRESSING HER OWN OPINIONS. She mirrors whom she’s with at the moment. At heart I suspect she is liberal, but she has heard my father’s fervent opinions about homosexuality, abortion, and premarital sex so often that she thinks they’re her own. (On a side note, isn’t it interesting that all of Dad’s hot-button issues revolve around sex? Hmm.)

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Ovulation Day (a.k.a. The First Day of Waiting)

Magically, I’ve gone from Cycle Day 1 to Ovulation Day in about ten minutes.

In my dreams. If only it were really that fast!

Because it’s the waiting that kills me. Waiting for my period. Waiting for ovulation. The two week wait. Waiting TWO WHOLE MINUTES to read the results on the pee stick.

Waiting for insurance approval. Waiting for the DNA tests for Fragile X. Waiting to start another IVF cycle. Waiting for another appointment with the RE when the IVF doesn’t work.

Then if I’m lucky enough to get pregnant, there’s the waiting for the first blood test results. Waiting for the second and third blood test results. Waiting for the first ultrasound. Waiting until 11 weeks to do CVS testing on the fetus. Waiting 1-2 weeks for the CVS results. Either waiting for the baby to die or waiting for the baby to be born.

Waiting, waiting waiting! And I’m sick of it. I turn 36 on Friday. I don’t have any more time to wait. Hurry up, baby!

Cycle Day 1: Stinky Cheese is a Pitiful Consolation Prize

It’s Cycle Day 1. Again.

[Actually, I got too busy to finish this post, so it’s Ovulation Day now. But I’ll pretend it’s still Day 1 because in the last 3 years, it has been Perpetually Cycle Day 1, something like the movie Groundhog Day.]

This (9/13) is the first Cycle Day 1 since my miscarriage on August 12th. As usual, my emotions are all jumbled.

Of course I’m terribly disappointed that I’m not pregnant. Every time that first speck of blood shows up, I want to cry. Sometimes I do cry and other times I just stare at it for a really long time. Everyone says “you won’t get pregnant right after a miscarriage.” As if that could possibly make me feel better when I wake up 4 mornings in a row to a BFN. I still had my hopes up because I did ovulate and we did have sex at the right time.

My nickname for Kyle is The Man With The Golden Sperm (which must be sung to the Bond movie song, of course) because the IVF lab measured his sperm as having 100% motility. (The nurse could hardly contain herself when she told us this. The norm is somewhere around 40-50%. Thanks for rubbing it in, nurse.) Suffice it to say, his little guys go straight to their target. Do not pass go, do not collect $200. While I am glad that his superhero sperm make up for my “special needs” eggs, it does make me feel even worse about myself whenever a pregnancy doesn’t happen because I know it’s my fault. My body betrays me and I fail Kyle.

The other day Kyle brought up his worry that maybe my eggs and his sperm are fundamentally incompatible. What a horrible, depressing, frightening thought. And there’s nothing I can do to prove otherwise.

On the positive side of this whole Cycle Day 1 thing, I’m relieved that the countdown to ovulation can start again. Luckily my cycle usually resets itself pretty quickly. How sad is it that I know what my body usually does after a miscarriage? The ovulation predictor kit told me I had an LH surge just 15 days after the miscarriage started last month, only a day later than usual. Good job, ovary! Next time, send that egg out with a sexy dress, a few cocktails and directions to Hotel Uterus.

Yes, I’ll have two more weeks to enjoy eating deli meat and stinky cheese, drinking margaritas, taking allergy meds and pain relievers, and generally not worrying about whether or not I might be pregnant. But those things are pitiful consolation prizes. Stinky cheese can go f*** itself.

With the start of a fresh new cycle comes another wave of anxiety and self-induced pressure to GET PREGNANT THIS TIME. In 10 days I’ll start in with the $60 ovulation predictor kits– what a freaking rip-off! Pregnancy tests are ridiculous, too. You cannot tell me that it costs more than 50 cents to make a pee stick, yet they’re sold in boxes of two for $16?

Another precious egg wasted, washed out with the blood. Sadness. Hopefulness. Ending. Beginning. Panic. Relief. Frustration. Lather, rinse, repeat.

Facilitator, Translator, Defender (Or, The Best R.E. Ever)

A few days after they said they’d donate their DNA to help test our embryos for Fragile X, my parents reneged until my husband Kyle and I could have a conversation with them.

The problem was, I was not emotionally capable of having the kind of conversation I knew they wanted. They’d want to challenge me about whether or not life begins at conception. I was afraid of telling them that I had made peace with the fact that our baby’s life would begin in a Petri dish and we would have to discard our unhealthy embryos. So I wrote a long email explaining why I felt it was OK. I tried to answer my dad’s questions and anticipate any future toughies, too. I spent so much time on it and my logic really seemed air-tight to me.

So when my dad wrote back saying that I hadn’t answered any of his questions, I was confused.

It was right around that time that my parents called my reproductive endocrinologist and grilled her about her religious beliefs. How the hell they managed to get ahold of her during the day like that, I have no idea, because I certainly cannot! But wow, Dr Avery was a champ. She grew up in a serious Catholic family herself so she understood these questions. They asked about her views on abortion; she said that while she personally does not perform them, she believes there are definitely many circumstances that would warrant one. They asked her how she could reconcile IVF with Christianity; she quoted, “Be Fruitful and Multiply.” They expressed exasperation that I wouldn’t talk to them; she explained that infertility is so emotional that sometimes a person just can’t talk about it.

My parents gave their blood samples and cheek swabs the very next day.

Dr. Avery received a very large gift basket from me that same day.

“Well, I can see why you have trouble talking with your dad,” she said. “He’s a pretty intimidating guy!” And she meant it. Dr. Avery: Ass Kicker, intimidated by MY dad?

More like Dr. Avery: Translator from English to God-speak.

Finding my inner manipulator and using it for good: Acquiring DNA samples for PGD

My parents raised me in an extreme Christian group that many considered to be a cult. It had loads of rules and expectations, and if you didn’t adhere to them, at best you should feel guilty and at worst you might be ex-communicated. Suffice it to say my parents liberally manipulated me at home with judgement, guilt and passive-aggressiveness. Most notably, my father still uses “God-speak,” which is my own term for when he says “it’s not MY opinion, it’s GOD’s,” when it is, in fact, my father’s opinion.

In many ways, I don’t blame my father for using God-speak. It’s really tough to separate your own beliefs from the beliefs of your religion, especially when the beliefs are emotional. Plus, playing the God card pretty much guarantees victory in any argument. If you’re not ready to whip out the Bible and turn right to the scripture you’re using as a counter-argument, you might as well just shut up. Which is what I do.

So when Kyle and I decided that IVF with PGD made the most sense to us, we knew we probably wouldn’t be winning my parents over. We hoped that when they were bouncing their grandbaby on their knees, they’d forget about the “unnatural” way he or she was conceived.

And then the PGD lab called. Unlike regular PGD, testing for Fragile X required more DNA than just mine and Kyle’s. They also needed DNA from an affected member of the Carrier’s family. I’m an only child and my grandparents are gone, so my parents would have to agree to give a blood sample and a cheek swab.

Well, s***.

S***, s***, s***. Of all the f***ing injustices. Our reproductive future was in the hands of people who thought God was frowning upon us. I felt so badly for Kyle; his dream was to have a family, and he married the one woman whose parents wouldn’t let him. Don’t get me started on the guilt I feel about being a Fragile X Carrier.

That summer I brainstormed so many different ways of getting their cooperation. I tried leveraging the HIPAA privacy laws so my parents wouldn’t know exactly what their DNA was being used for, but the genetic counselor felt uncomfortable with that and my parents are too perceptive anyway. Kyle wanted to steal hair from their hairbrushes (that was before we knew we also needed a blood sample). (He joked about drugging my parents, too. If we could’ve gotten away with it, I would’ve done it!) The genetic counselor offered to meet with my parents herself, but I knew she wouldn’t try to hide what’s done with the unused embryos, etc.

I finally accepted that we’d just have to come clean and beg them.

Then it was all about how to approach them. I wrote out pages of potential speeches. Kyle offered to do the talking, but he didn’t know the hot-button words to avoid, so I forbade him.

The anxiety was paralyzing. I finally went to my primary care doctor, who diagnosed Social Phobia/Social Anxiety Disorder. At the time, the description of SAD felt right, and now it’s almost uncanny. The Doc started me on Wellbutrin every day (which would help for both my anxiety and my depression) and Ativan as needed. She told me to take an Ativan right before I talked to my parents.

The route I eventually took was suggested by my therapist. She suggested that I turn my parents’ passive-aggression back on them. In everyday life, I was actively trying to eradicate my passive aggressive behavior, but she said that in this situation, it was necessary to speak their own language. I would effectively be manipulating them the same way they manipulate me.

So I took my Ativan and called them. I explained that they really should know which one of them was the carrier because of certain health concerns for them. I stressed their responsibility to get tested so we could inform other family members who might also be affected. I said this was the only way that Kyle and I could ever have biological children. Waah, waah, it’s up to you, and we’ll just be over here in the corner, alone, in the dark…

After I made my pitch, my parents’s stunned (and stunning) reply was, “OK.” And thus began the next chapter in our fertility journey.

———
P.S. I can’t tell you how nervous it makes me to have new blog followers who proclaim their Christianity or right-to-life beliefs. I’m trying not to censor myself, but it’s hard. I fear retribution. Everyone, please read my words with kindness.

The Struggle to Find Support, Part 4: Family

When I wrote parts 1-3 of this series, I actually forgot about family. Why? Because my parents have been the most judgmental influences in my life. It’s taken years of excellent therapy and a very helpful husband to realize the extent to which judgement is toxic, debilitating, stubborn, and long-lasting even after the original source has been removed.

After our meetings with Dr. Avery and the genetic counselor, I stupidly told my parents about my Fragile X carrier status and our five reproductive options: TTC with TFMR, IVF with PGD, Egg Donation, Embryo Donation, and Adoption. Actually it was necessary and harmless to tell them about Fragile X, but I really wish I hadn’t shared our options just yet. They were quick to tell me what they thought I should do.

In my conservative Christian parents’ eyes, TFMR would send me straight to hell. IVF, conceiving “unnaturally” outside the womb, “wasn’t what God intended.” Egg Donation and Embryo Donation were like IVF. Therefore, Adoption was the only Christian way to go. They would love adopted grandchildren like their own, they said.

OK, well, most people can tell their parents to shove off. I’m not most people. What if they’re right, I thought. What if I’ll really go to hell? Will my parents be disappointed in me if I choose a different option? (The answer to that last question was, in fact, yes.) A lifetime of their judgements, as well as my childhood church’s judgements, echoed in my head. Plus, as I’ll describe in my next post, I wound up needing my parents’ help.

Ironically, sometimes I think that the delay in our parenthood could have been divinely inspired. The last 3 years have allowed me the time and opportunity to identify my own judgmental nature and negative thinking so I can try not to burden my children with the same anxiety, self-doubt and perfectionism.

So what about Kyle’s family in all this? They have basically been the perfect supporters. On our way home from seeing Dr. Avery we stopped to visit Kyle’s mom. She said that she would support us in whatever decision we made, but that it would have to be OUR decision. The rest of his family has been similarly hands-off. They don’t bug us about our fertility status, but if we bring it up they are supportive and make absolutely no attempt to insert their own beliefs into the conversation. They might be, sometimes, a little too hands-off, but that is vastly preferable to my parents’ insidiously controlling ways.

I guess the moral of the story here is: Take the support where you can get it. Try to ignore the judgements. Do what you think is right.

The Struggle to Find Support, Part 3: Journaling

A long time ago my therapist had suggested writing as a way of coping with my miscarriage. I wrote down my deepest emotions in my suede-covered journal. I wrote a letter to my unborn baby expressing the hopes and dreams that I’d had for him or her. Those things do seem to help many people, but it didn’t help me that much.

During some of my IVF cycles, I coped by writing down medication dosages, shitty interactions with the insurance companies, and my body’s varying response to the hormones.

Then recently I discovered blogging. It feels different from writing in a journal. I edit and re-write practically every sentence, so I have a lot time to reflect on each idea. I attempt to clean up my rambling wordiness and often wind up clarifying my emotions in the process. Everything around me disappears when I’m focused on this, like meditation. When a post is done, I feel that I’m seeing it from a few steps away, or from the eyes of another person. I can let go.

Finding support has been an ongoing process; it’s all about searching for what I need at this very moment. Right now I need to let go of my stress and negative feelings, and I don’t need to hear what somebody else thinks I should be doing instead.