Tag Archive | IVF

On The Back Burner

Last night my friend Claire and I attended our friend’s performance of the Mozart Requiem. It was odd being an audience member, coat-checking my viola rather than unpacking in the green room. We settled in our seats and began searching the stage for any musicians we knew.

Suddenly my heart leapt into my throat because there in the chorus was the man I almost married before I met Kyle. It had been almost 5 years since I’d seen Jim, right after Kyle and I got engaged. Jim had congratulated me with a wistful look in his eye. I could almost hear him saying, It should have been us.

The backstory: It was that wonderful time between finals and college graduation, when the weather is gorgeous and there’s nothing to do but savor the time you have left with your friends. Jim and I went on two dates and it was kismet; the sun burst with brightness and the stars glittered in the night. I’ve still never felt such euphoric highs in my life. Two weeks later he proposed. He didn’t have a ring and he was so casual that I didn’t believe him at first. My spontaneous, passionate, free-spirited side was swept away and wanted so badly to run away with him, but my brain understandably needed more time. I was afraid that someone who falls in love so fast and hard would fall out of love just as fast and hard. When I asked Jim if we could take the proposal off the table so we could date without pressure, he said no, he’d only “put it on the back burner.” There were other red flags: he’d gotten his roommate pregnant but wouldn’t admit it to me; his finances were in chaos; he loved to argue about everything. I knew deep down he was bad news. Despite my fervent feelings for him, I reluctantly cut him loose.

Five years later we ran into each other again. Surprisingly, our feelings for each other hadn’t changed and he’d matured in many ways. It seemed that the universe had thrown us back together for a reason. But sadly, I wound up breaking his heart a second time. I wondered for years if I’d made the right decision. Only now do I know how to articulate it: I loved our passion for life and each other, but I didn’t trust Jim to take care of me.

During the concert, after my heart calmed down, I contemplated life if I’d married Jim instead of Kyle. With Jim, life would be one long roller coaster with endless metaphysical conversation, intense arguments, and explosive make-up sex. We would’ve moved from place to place to chase the next adventure, living paycheck-to-paycheck and sometimes not paying our bills. There is no way we could’ve afforded IVF, even if we had health insurance.

With Kyle, my life is smooth; our conversations are down-to-earth, our sex is yummy vanilla, we’ve lived in the same place since we got married, and our income is steady thanks to his excellent job. We’ve done four rounds of IVF with PGD to combat this Fragile X thing. But most importantly, I am happy. He is happy. Even when we’re sad, we’re happy.

But there is one fundamental part of my personality that Jim brought out in me that Kyle doesn’t: passion. Passion for life, passion for music, sexual passion, passion for the beauty of the earth, passion for thought-provoking conversation. Kyle never inhibits me from being passionate, but he doesn’t exactly inspire me, either. He works hard and plays hard but doesn’t dream the same way I do.

What happened to those passionate dreams I had when I graduated from college? And why have I fallen out of practice in my dreaming recently? It’s not really because of any dynamic with Kyle. No, it’s because we’ve spent the last three years failing to have a child. It has consumed my thoughts and drained my energy. My dreams, to use Jim’s words, were put “on the back burner.”

This is your wake-up call, Haven. You are more than a wannabe mom. You have dreams and goals of your own that have nothing to do with babies. It’s time to tap into your passion and live your life the way you’ve always wanted to.

Get Me Off This Hamster Wheel

Sigh.

Sunday/early Monday’s spotting was very dark brown, which supported my theory that it was implantation bleeding. Plus, it was a little earlier than my period usually arrives, which is what happened with my last pregnancy/miscarriage. But the bleeding picked up and got bright red like a normal period. The multitude of HPTs have all been negative.

It’s time to accept it: I’m still not pregnant.

I’m mad at myself for getting my hopes up and embarrassed about thinking I could’ve felt implantation.

At the same time, I’ll still imagine I was pregnant for a couple of days before my body washed it out. Maybe my body knew that this child wouldn’t be healthy and nipped it in the bud. But how many unhealthy embryos must we conceive before a healthy one takes? Including the IVF cycles, we’re talking about 30-ish embryos that either had Fragile X or just didn’t live.

The image of a hamster wheel comes to mind. With every step comes the hope that maybe this time you’ll get a little closer to your destination, only to find that you haven’t moved at all. Not even a smidgen. No matter how many steps you take or how fast you take them, you only succeed in making yourself tired.

So, the cycle has begun again as of yesterday. Maybe this will be the month.

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.)

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!

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.

The Struggle to Find Support, Part 2: Online Forums

As a Fragile X carrier, I find it difficult to fit in with existing support groups.

An “IVF with PGD for Fragile X” group doesn’t exist. That’s too specific, I suppose, or maybe Fragile X isn’t well-known enough yet. With Fragile X being the “#1 Cause of Inherited Mental Retardation,” it’s surprising that nobody outside of the Fragile X community has heard of it, save a few medical professionals. It’s more understandable that people wouldn’t have heard of PGD (Preimplantation Genetic Diagnosis), since that kind of testing for Fragile X has only existed since 2008, and only in a couple labs nationwide.

Miscarriage forums were helpful for a little while after my first miscarriage, but they only took me so far. As soon as Fragile X came into the picture, I felt that my trajectory took me in an entirely different direction.

IVF groups *should* have been helpful when I was going through IVF, but mostly they were just depressing and panic-inducing. They should’ve been renamed Failed IVF support groups. It was stressful for me, a desperate woman, to read about all the other desperate women on there, listing all their unsuccessful cycles, talking about their angels and sending everyone else baby dust. I was looking for a more positive, comforting group, but I can see why they don’t really exist. Either you’re on the IVF/TTC site, or you’re on the Pregnancy site; there’s no in-between.

Fragile X groups are actually the worst. They’re intended for families who already have a child with the disorder. To join the group and shout that I might terminate for medical reasons (TFMR) seems like the worst kind of insult.

A TFMR support group would probably be helpful at this point, I guess. It certainly wasn’t when I was still completely committed to IVF with PGD, thinking it would work. I’m ashamed to admit that I judged everyone in those groups. Being a Fragile X carrier has turned many of my “beliefs” and “morals” on their heads, for which I am extremely grateful.