NIAW. An open letter to infertility.

This is my second year blogging during NIAW (my 3rd year being an active resident of Infertility Island) and Lord do I feel like a lifetime has passed in the past 3 years. Looking back to this time last year I was only weeks out from our miscarriage (I was still going to our fertility center every 3 days to trend my HCG levels, they wouldn’t say I ‘completed’ my natural miscarriage until my level was back to 0…), and I was a mess. I can remember how I felt this time last year: I was filled with grief over the loss of our Warrior, but also so much anger, resentment and disappointment. It’s not pleasant to remember. Two years ago we were just at the beginning of our infertility journey (I genuinely hate using the term ‘journey’ because it reminds me of every episode of The Bachelor, but work with me here), Dan and I had just met with two different genetic counselors and were fairly confident in our decision to pursue IVF, but we were weeks away from meeting with our fertility specialist and being told IVF wasn’t just ‘one of our options’ it was ‘our only option’. I was overwhelmed, but did not yet grasp what the future had in store for us. Go back even further to April 2014, I was 2 months off birth control and every month held excitement and promise…our conversations about having children were still all rainbows and sunshine. It’s been a long road for us and for some reason this week causes me to reflect on that. But instead of writing a post about infertility, I’ve decided to write a post to infertility instead…

 

Dear Infertility,

You snuck into my life three years ago like an unwelcomed houseguest who tore through my happy home, uprooting every aspect of my life and refusing to conform to my house rules. You laughed at my dreams, you mocked my hope, you spit on my perfect plans. You were hell-bent on destroying my relationships, my body and my mind. You were like a teenager with their parents ATM card: you kept taking more money and then not holding up your end of the bargain to earn it back. You kept me up at night, you forced me to go to work with tearstained cheeks and bloodshot eyes, and at times you caused such physical pain I questioned my ability to go on. You forced my hand in almost every aspect of life: you dictated my diet, my job, my vacation schedules, where I built a home and how I spent my paycheck. You made promises you couldn’t keep through heartbeats we never heard. You kicked me when I was down, time and time again. You made me bitter and angry and sad. You made me someone I hated.

And then one day I stopped fighting you.

I welcomed you into my home. I acknowledged how you wanted to live and I accepted that I could live with some of your terrible habits. I made a room for you in my new house and in my heart. I realized I quite like the diet you put me on (I was drinking too much caffeine), the yoga you force me to do daily and the mindfulness you strong arm me into practicing was decreasing my stress level. I realized if I shared you with my friends and family, if I talked about you and shared the details of how my life was changing because of you, that they could teach me different ways to accept you. They grabbed hold of some of the luggage you were forcing me to carry around and it became bearable, it (and I) became lighter. You were an uninvited marriage counselor, you forced Dan and I to acknowledge where we fell short as a couple and inspired us to be better in every aspect of our marriage. You were a cruel teacher at times, but I recognize I needed almost every lesson.

And overtime, without really noticing, I stopped seeing you as the enemy.

I stopped seeing you as something destined to destroy me and realized maybe, in your own terrible way, you were saving me. You were forcing me to be kinder, more present in my life and more generous with my love. You taught me to appreciate the little wins in life, because they really do sustain you during the big losses. You taught me to take the time to tell the people I love how much I love them and appreciate them, because nothing is ever promised. You replaced years of seeing myself as someone weak and insignificant with a profound sense of strength and the knowledge that I’m a survivor. You taught me every lesson there is to know about love.

I don’t doubt you have more to teach me. I don’t question that I will still curse you at times. I am confident you will continue to irritate me and make me cry. But I will remember to say thank you. I will remember that even though you came into my home and rearranged every part of my life, I like where you put some things. You’ve been a terrible companion, but you’ve made me a better friend.

I hope someday you leave. I hope someday there isn’t room for you in my house. I pray you get kicked out by 1 (or 3) of these little embryos we fought so hard for. But even after you leave, when every aspect of my life isn’t dictated by you, when you don’t occupy every moment of downtime in my mind, I’ll remember you. I’ll remember how you changed me, by forcing me to change myself.

So, infertility, thank you…thank you for all of it.

Meghan

Too much…

As you may (or may not) have noticed I’ve taken a little break from blogging…my heart just hasn’t been in it. The truth is, I’ve been struggling…

First: the basics- We met with our physician last Monday to discuss our plans moving forward. I’m starting birth control tomorrow and then adding Progesterone and Estrogen in a few weeks. We scheduled my hysteroscopy for May 1st. We’re looking at either a June 2nd or June 9th transfer (our MD only does Friday transfers and I prefer him doing ours, hence the 7 day window). Our 3 embryos are all really excellent quality, he rated one an A and the other two A+. The husband and I decided to transfer two this time and statistically the odds are in our favor that one of those is going to implant…per our MD a greater than 50% chance actually. So, if we’re looking from a strictly statistical standpoint (says my husband the accountant) the probability is we are going to have at least one child from one of these 3 embryos. So choo choo choo right?!

Wrong.

The fact is, statistic have never dried my tears over the past 3 years when I’ve stared down at yet another negative pregnancy test, statistics have never held my hand when I’ve listened to a genetic counselor or physician explain SMA, statistics have never drawn up the syringe of Follistim or absorbed the initial burn of a Progesterone IM injection and statistics did not wipe my forehead as I lay sweating on the bathroom floor miscarrying our Warrior last year. So how am I supposed to ride this positivity train forward based on statistics…statistics don’t really mean anything to me anymore.

And that’s the problem. When I think with my head, I remember statistics suck and I don’t let myself move the train too far forward. But when I think with my heart, I’m practically planning a first birthday party for a smiling, perfect, towhead baby. And I feel like this train is going to explode from the constant speeding up and slowing down.

This is the struggle I was discussing with my sister, Cait, on Friday. How in the world do I stay positive and optimistic, while also not being too positive or too optimistic because I know nothing is promised. Her response “I cannot imagine how you prepare yourself for something you think is coming, all the while also having to consider it may never arrive…I don’t know how you cope with that.” And really, isn’t that infertility in a nutshell. We spend all this time (and money and energy) preparing our bodies, our homes, our hearts for tiny humans who may never arrive, but we cannot think that they’ll never arrive because negativity is bad for the soul. But you also cannot plan too much, because if you believe in the child-filled future too much and don’t get it…you’ll be devastated. Infertility is learning the language of too much…you cannot hope too much, you cannot feel too much, you cannot want too much, you cannot dream too much…you cannot travel on your damn positivity train too much.

And I’m struggling because I don’t know how much is too much right now. There’s no meter to tell me I’ve reached the perfect level of hopeful positivity and acceptable reality. I don’t know how to judge if browsing baby clothes online is acceptable, but walking through the baby aisle at Target isn’t. I’m not sure if discussing baby names with Dan is okay, but writing them in a notebook is kind of crazy. I can’t tell if imaging walking through my neighborhood pushing a stroller is pleasant daydreaming, but making lists of pros and cons of strollers is delusional. I just don’t know what is too much and it’s destroying me. And honestly, I don’t see it getting better anytime soon…

So, I might not write a lot for now. I think I just need to take some time to try and figure out how to survive the trip on this train. I promise I’ll update the schedule and route as soon as I have updates.

WordsWednesday

“That was the thing about the world: it wasn’t that things were harder than you thought they were going to be, it was that they were hard in ways that you didn’t expect.” –L. Grossman

Looking backwards.

Lately, I feel like I’ve been spending a lot of time looking backwards. I know this is mostly due to the fact that we’re in Cycle 2 limbo…we have a plan, but we cannot move forward with anything. I have to get my period again before we can start preparing for a transfer (birth control, Lupron, Progesterone and Estrogen coming soon) or schedule the Hysteroscopy. It never ceases to irritate me that I’ve spent 3+ years hoping to not get my period and then during an IVF cycle I’m praying for it…the joys of infertility. I also know it’s the time of year…tomorrow is April 1st…which was supposed to be the day we heard our Warriors heartbeat last year, but instead was the day we were told I was going to miscarry. So I find myself looking back, instead of forward.

Maybe in a way my remembering is actually a defense mechanism: thinking about our Warrior who wasn’t prevents me from imagining our 3 embryos who may be. I don’t want to think about these embryos as babies or our future…I want them to stay what they are until I know they’re going to be something more. We made a mistake last time, from the beginning we made our Warrior bigger than it was. Last cycle, the minute we found out we only had 1 healthy embryo it became greater than a cluster of cells that could, possibly, eventually become a baby…that 1 lone embryo became every hope and dream Dan and I had. Then when I became pregnant that poor little embryo grew (without ever really growing much at all) into so much more. I expected our Warrior to fix everything…every moment of sadness, disappointment, grief I had suffered in the 2+ years that went into becoming pregnant was going to be healed by this tiny cluster of cells. Every unanswered prayer, unfulfilled wish, unsatisfied longing was going to be answered/fulfilled/satisfied by our Warrior. That embryo was really only ‘present’ in our lives for weeks, but I expected it to fill voids that had been growing for years. My hope was unrealistic and so when we lost that hope my grief was unfathomable. I did that to myself. And I don’t want to do it again.

A few weeks ago, before we knew our 19 went to 3, Dan and I were living in a little IVF dream bubble. We became too confident, too sure. We didn’t hope this cycle was going to give us a baby, we knew it was. We actually discussed the nicknames we would give our babies from embryo to baby (you find yourself having very weird conversations when years of your life are devoted to imaging dream babies). We both loved that our Warrior was never given one of the names we picked out 3 years ago for our children and we decided we wanted any future embryos to also have nicknames (I liked Lil Nug, Dan liked Bebop…don’t ask why we both went with names that sound like boot-leg hip-hop artists). Now, I’d like to go back four weeks and slap myself in my smug embryo nicknaming face.

So, I think that’s why I don’t spend my days thinking about nicknames or pinning nursery ideas or reading What to Expect…I can’t do that this time. Instead, I’ve been thinking about our Warrior and last year and how different I thought life would be right now. I think it’s safer this way…letting myself get teary eyed thinking about how devastating it was sitting in exam room 7…realizing that my world was shattering because a single sound wasn’t being made. Right now I have all these emotions…fear, hope, sadness, excitement and I’m afraid to project them onto our 3 embryos…I’m afraid what that could do if they never become more than what they are at this moment…and so I’m going back…to our Warrior. It’s a safe place to remember and feel the sadness and fear and also excitement and hope.

In a way, I guess there’s comfort in looking back. It’s like this one book I have… it’s the best book I’ve ever read- Kazuo Ishiguro’s ‘Never Let Me Go’. It’s a sad book actually, there isn’t a happy ending…but I love it. I’ve read it more times than I can count, there are entire passages I’ve memorized…and even though every time I read it I feel disappointed for the characters, I already know the disappointment. So although I’ll get teary eyed and feel sad, it doesn’t overwhelm me. And maybe looking back, instead of looking forward is kind of like reading that book, instead of finding a new one. I know how our Warriors story ends…it’s such a shitty ending and God I wanted it to end differently…but I know the ending. I’ve re-visited that ending a million times…it (like the book) doesn’t overwhelm me. I think I’m spending all this time looking backwards because I don’t have it in me to start a new story…and I don’t think I need to start a new story…yet.

WordsWednesday

“Well, I always know what I want. And when you know what you want–you go toward it. Sometimes you go very fast, and sometimes only an inch a year. Perhaps you feel happier when you go fast. I don’t know. I’ve forgotten the difference long ago, because it really doesn’t matter, so long as you move.”- Ayn Rand

3…

So we got the call yesterday…the results…3 genetically normal embryos, all healthy, all ready for a transfer (transfers, because who are we kidding I’m not transferring all 3 at once). I have to be honest, I never saw it coming. All three embryos are SMA-carriers (just like Dan and I are), but not a single one is affected. I didn’t expect that. In a way, the past three years has prepared me to expect worst case scenario and yet we got best case scenario. I’m still trying to wrap my head around that. I don’t think I realized how much I was preparing myself for another bad outcome, until, we got the best outcome and I realized I couldn’t even process it because I was so shocked. What I feel now…happiness, gratitude, optimism, I don’t know how to handle it. There have been a lot of tears over the past 24 hours, happy tears. Tears brought on my exhaustion and stress and the realization that something went in our favor…we got a win. A HUGE win. I feel overwhelmed…but the good kind of overwhelmed…overwhelmed for all the right reasons.

So the plan now is to put the train back in motion. We know two stops.

  1. Hysteroscopy
  2. Transfer

It would probably be easy for me to think about other stops…stops that involve pregnancy announcements, nurseries, baby bumps, heartbeats, babies…but I’ve decided that this train is only planning for stops we have scheduled. Stops we know are coming. I’ll sit in my cabin and be positive, I may dream a bit and hope a lot…but I won’t plan. The truth is everything can still wait.

Everything, except celebrating 3 healthy embryos. We don’t have to wait for that. That’s real…and it’s more than enough to celebrate right now.

Choo Choo Choo.

Everything can wait.

So our train is still stopped…next stop TBD.

After speaking with our physician that Friday he told me test results should be in by 3/16 (I was shocked because last cycle PGD took 6 weeks, but he assured me in the past 12 months science and testing has really advanced…the nurse in me is impressed and fascinated by the rapid development, the infertile IVF patient in me just wants my results). The 16th came and went without any phone call…so I left my nurse at the center a voicemail early Friday morning (the 17th) as Dan and I drove to the airport for a weekend out of town visiting family…I told her we would be flying until noon, but if she had results to please leave a voicemail. No sooner had we landed and I turned my phone off airplane mode (I was still buckled) did my phone start buzzing and my stomach dropped…this was too punctual. My nurse (who either really likes me or is convinced I’m teetering on totally losing my mind) exclaimed she had been watching her clock ready to call me at noon so I wasn’t spending a moment of my vacation being stressed…there were no results yet and there wouldn’t be any until at least Tuesday 3/21. She told me to enjoy my time away and we’d talk as soon as she had more information for me.

So Dan and I tried to enjoy our weekend in Virginia. We spent four days visiting with his brother and sister-in-law and their two children (ages 2 and 2 months) and if anything could distract us from our infertility it’s our niece and nephew. It used to bother me, being around children when we could not have any (and yes spending our Saturday afternoon at a children’s museum did make my heart ache a little), but like everything lately…I felt different. I was able to compartmentalize a little better: yes it sucks I do not have a child, if we hadn’t miscarried, our Warrior would be 2 months older than our niece- the pain in that is not lost on me, and it probably never will be. (I doubt there will be a time when I look at her and don’t think about the child I could have). But there is no Warrior…there is a beautiful, healthy, happy niece. I can rock her in my arms, I can buy her adorable jumpers, I can feel overwhelming gratitude her parents asked Dan and I to be her godparents…and I can feel happy. I can feel happy that she exists while also feeling sad that our Warrior doesn’t…and one of those emotions doesn’t belittle the other. It’s okay to be both. It’s possible to spend my evenings falling more in love with Dan as he does bath time with our nephew, while spending my nights wide awake wondering what will become of our 3 embryos and their tiny DNA. There’s room in my heart and my head for all of it. Our 4 days away was exactly what Dan and I needed…a chance to just be Uncle Dan and Aunt Meghan (occasionally called Aunt Bacon…which I hope is because he loves me as much as he loves bacon and not because he thinks of me as a pig) and not infertile, childless SMA-carriers.

I’ll be honest though, I never really relaxed during our 4 days away. Every time my phone buzzed I felt my heart rate speed up. Any moment of downtime I started thinking about how insane it all feels…here I am sitting on a bench in Mount Vernon with my husband, while our embryos sit frozen in Connecticut and their future is being decided by a lab tech analyzing their DNA in New Jersey… It’s almost morbid to think those little cells may someday turn into little babies who sit on my lap on the same bench in Mount Vernon…or they may just be little cells that end up in a medical waste bin…and I have no control over that. (Okay that last comment wasn’t almost morbid, it was morbid…but as I said to Dan multiple times over the past 2 weeks when I’ve broken down in tears…I keep falling down the rabbit hole of what could be…and Wonderland is not all singing flowers and tea parties).

Anyway, I went back to work Tuesday and left my cell phone sitting on my computer waiting for a phone call…it never came. I repeated the same cycle on Wednesday. Finally, Thursday I called our fertility center and left my nurse a voicemail which she promptly returned  apologizing but saying the lab actually needed more time because of our ‘single gene mutation’ testing (also known as that little monster SMA)…long story short: we’re  still waiting.

So now, like I said, we keep the train stopped and we wait. The good thing is we have destinations in mind….we either have a healthy embryo, meet with our physician April 10th, schedule a hysteroscopy, and attempt a transfer…or we don’t have a healthy embryo, meet with our physician April 10th and prepare for Cycle 3. (Dan and I both agreed we’ll do a 3rd cycle of IVF if necessary, neither of us are ready to jump trains altogether). Until then, I’m doing everything in my power to keep myself busy these next couple of weeks. I’ve packed my schedule with overtime at work, lunch with friends, phone dates with my older sister where we spend an hour discussing our favorite TV shows and date nights with Dan. I have a closet of art supplies and a Pinterest page of DIY projects waiting for me. I’m book swapping with a girlfriend (because we’re both living our best nerd lives these days) so I’ll have 3 new books to occupy me. I’m not naïve enough to believe any of these things will prevent me from stressing about our results, but they’ll give me momentary reprieves and that is all I can really ask for these days. I don’t know how to describe how I’m feeling lately…I’m not as overwhelmingly sad and disappointed as I was last week, but I’m nowhere near as positive and optimistic as I was 3 weeks ago. My aunt e-mailed me last week after reading my blog and encouraged me to take a step back (her words: wait for a heartbeat before throwing yourself wholeheartedly into baby planning…everything can wait). And she’s right…everything can wait….so we’ll wait…I’ll let you know when the train starts moving again.