The Numbers Game

I hate numbers. I still consider it one of my greatest lifetime achievements to have made it through all of my school years without ever taking calculus. Despite my math aversion, I sure have spent a lot of time obsessing over numbers the last few months. It all started with the daunting number of 1 in 6: the number of couples in the U.S. that have trouble getting pregnant or sustaining a pregnancy and ultimately face the label of “infertile.” While this number illustrates how common the problem is, it does nothing to remove the sting of discovering that you’re part of that unlucky statistic. Then, once you learn that IVF is your only chance at pregnancy, another number comes into focus: The odds of a live birth are between 34 and 42 percent over three cycles of IVF. Another set of numbers that appears promising, until you look closer. That’s less than a 50% success rate over three excruciating, draining, painful, and expensive IVF cycles. It’s hard not to feel discouraged by the sheer girth of the obstacles ahead.

After all the diagnostics and testing and examining and monitoring, the first major step of the IVF treatment cycle is preparing the woman’s body for egg retrieval. The goal here is stimulate the ovaries to create as many follicles as possible, so that the doctors can then go in and retrieve all the eggs from those follicles for hopeful fertilization with the man’s sperm. In theory, the more eggs, the more possibilities for successful fertilization. But it’s a delicate balance - you want to stimulate, but not overstimulate the ovaries, which can result in a tremendous amount of pain and discomfort, and, in extreme cases, severe illness or even death.

The ovaries are stimulated through a careful mix of hormones and medications administered both orally and through self-injection (mostly in the abdomen, but also in the butt muscle). Your fertility team monitors you very closely throughout the process, both with blood tests and transvaginal ultrasounds, and tweaks your prescriptions and dosages as needed. In fact, in the week leading up to my egg retrieval, I was in my clinic eight mornings in a row, and about 10-11 times over the course of the preceding two weeks. While I was grateful for the care and attention I was receiving, the daily 6:30 AM trips to the clinic took their toll on me. I felt like a slave to the system, even if I was there voluntarily.

So for a few weeks, I paid very close attention to numbers - dosages for medications, measurements for mixing and injecting hormones, times of the day I was supposed to take each drug, blood test levels, and follicle counts and sizes. Each night, I injected myself with two to three needles, some that were painless, and some that felt like I was shooting molten lava into my skin. But finally, it was time. My doctor told me that I had a large number of mature follicles, and we were ready for the retrieval.  And I was ready for this procedure. By this point, I had 10-12 grape-sized follicles dangling off of each oversized ovary. If that sounds uncomfortable, it is. I swear, I could feel my swollen organs jangling around every time I moved. The bloat and discomfort were REAL. Mentally, it was no different. The daily injections, the hormones messing with my emotions, the obsessing over follicle size and counts - it was all weighing heavily on me and I was anxious for the next step.

I don’t want to gloss over what this process is like. Now that it’s over, it would be easy for me to forget how I felt when I was in the midst of it. It’s rough - both physically and emotionally. Your veins are coursing with off-the-charts levels of hormones; you feel physically out of whack and uncomfortable and endlessly exhausted, like you’re a stranger in your own body; and to top it all off, there’s the worry about the entire process constantly gnawing at the back of your brain. During these few weeks, I felt like a science experiment, a follicle farm, and nothing more than a vessel. Everything about my body and my mood felt entirely out of my control, and for a Type A like me, that was disconcerting to say the least. The process is (hopefully) worth it, but it’s no cakewalk. Remember this if you know someone going through it. They’re not feeling, thinking, or looking like themselves, and they still don’t know yet if they’ll get the outcome they’re hoping for. So be extra patient and gentle with them - trust me, they’ll notice, and they’ll be so grateful.

To prepare for egg retrieval, you are told to inject what’s called a “trigger shot” into your butt muscle exactly 36 hours before the retrieval procedure. I cannot express to you how gravely important it is to time this shot perfectly. When the clinic tells you 9:00 PM on Tuesday, you better make sure that needle is entering your skin at 9:00 PM on Tuesday - not 8:58, not 9:03. 9:00. Numbers, numbers, numbers.

Egg retrieval is an outpatient procedure during which I was given general anesthesia (which, I have to say, I get way too excited about. It just feels like the best nap ever. Anyone else? No? Just me?). I was pretty nervous about it - not that anything bad would happen to me physically, but that they wouldn’t be able to retrieve enough healthy eggs. In full disclosure, I even cried a little on the operating table right after they gave me a relaxant via my I.V. and just before I was put under completely. The last thing I remember is tearing up and my doctor joking, with a warm rub of my leg and a kind smile, that I couldn’t possibly be nervous about this tiny procedure when I had donated a kidney. My reply was “There’s just so much more riding on this…” and then off to sleep I went. And although I was drugged up, that really was the core of what was going on with me emotionally at that point. There was so much preparation and time and money invested, and so much riding on this and it felt like it finally was coming to a head. The nightly injections had taken their toll on me - physically, mentally, and emotionally - and now we were going to see if it was worth it. I worried that it would all be for nothing.

When I was woken up about 25 minutes later and brought to the recovery room, I learned that it wasn’t all for nothing, and again, I cried with relief. My doctor was able to retrieve 24 eggs, 14 of which were mature and were being whisked away for the fertilization procedure and ICSI with Bobby’s sperm. That means we had 14 chances to create an embryo together. And that’s a number I liked very much.

Recovery from the retrieval wasn’t as bad for me as I’d heard it was for many others, but it certainly was no walk in the park, either. And for a couple of weeks after the retrieval, things improved at a snail's pace. My ovaries had to slowly shrink back down to size, and all the stress and hormonal changes of the last few weeks finally caught up to me. I was tired, friends, so very tired. But I had grown 14 baby chances inside of me, and that was reason enough to smile and press on through the pain.

The days following the retrieval were also when the real numbers game began. Nearly daily for the next week, my clinic called with an update from the embryology lab. You see, it’s not enough to retrieve eggs and get as many mature ones as possible. Then you have to see how many fertilize. Then how many of those live and keep dividing until day 3, then day 5, and then, sometimes, day 6. Once you find out how many are still going strong at days 5 or 6, then you can choose to send them off for genetic testing (which we opted for) to see how many are chromosomally normal. Our doctors warned us that at nearly every stage, we shouldn’t be surprised by up to a 50% drop-off rate (or higher). In fact, some people go through this whole process and have zero embryos to show for it when all is said and done. Or, they don’t even end up with enough embryos to send for testing and freezing. As with every step of this process from day one, there were no guarantees, and each day when the phone rang with a call from our clinic, our hearts stopped.

Here’s how it played out:

• 24 eggs retrieved
• 14 mature eggs ready for fertilization with ICSI
• 9 eggs successfully fertilized
• 8 blastocysts remained at day 3
• 7 remained at day 6 and were biopsied for testing and then frozen*
• 4 embryos came back NORMAL from genetic testing

*At this point, you can opt for a fresh or frozen transfer. A fresh transfer means the embryo (or embryos) are transferred back into the woman’s uterus during the same menstrual cycle as the retrieval. This usually takes place on day 3 or, more commonly, day 5 after the retrieval. We opted for a frozen embryo transfer for two reasons: 1. It allowed me to take a break from all hormones and treatments for a few weeks so that my body could be totally clean for the transfer. 2. It enabled us to send the embryos to a lab for genetic testing (which cannot be done with a fresh transfer because it generally takes about two weeks to get results). After a ton of research and talking with our fertility team, we decided this was the best course of action for us and would give us the greatest odds of walking away with a healthy baby.

That 4 number maybe doesn’t sound so hot when we started with 14 viable eggs, but trust me when I say that it is AMAZING. This means that we have four little Melissa and Bobby embryos that are genetically healthy, waiting in a freezer to be transferred back into my uterus to potentially become Baby Andersen. FOUR CHANCES, YOU GUYS. This also means that, as long as my first transfer is successful, we will be able to try for a second (or third, or even, maybe, fourth!) baby without going through the painful egg retrieval process again. And if there’s one upside to going through IVF and having enough embryos to bank for the future, it’s that no matter what age I am when we try for our next kid (assuming we end up with one!), I will be doing so with my 33-year-old eggs (as opposed to whatever age I am when we try again). It’s like my biological clock has been frozen in time. Science is pretty cool, isn’t it?

But the numbers game isn’t over. The embryo transfer is next, and that’s when things get really real.

Emotionally Destitute

This is by far the hardest post I’ve had to write yet. No, I don’t mean to say this in the sense that I’m going to a deep dark place or sharing something heavy or powerful. It is hard because every time I’ve tried to write, or even think, of a new blog post, I stare off into white space.

I was certainly gung-ho about the idea of a blog at first.

“We need to do this right.”

“We should post multiple times a week.”

“Don’t get lazy.”

As I’ve said previously, I make an effort to keep creativity and writing in my life every day, but my creativity and writing had dried up in the all-consuming infertility battle. If infertility was robbing me of my ability to stay creative, why not embrace it by simply writing about it? And once I started writing about our struggles to have a kid, the thoughts poured out of me. For a few months, I had a hard time fitting my multitude of thoughts into each post. Then we started going to the fertility clinic, we met some amazing doctors, and I quickly felt like we were no longer lost in a wilderness of our own struggles. We didn’t just have a guide through the process - it was like a train appeared in the woods. This train was populated by doctors who could answer any question we had, nurses who shepherded us each step of the way, and even finance people who told us where to send the checks. It felt like we were finally on the path to baby-land. The folks at fertility clinics are so confident that they make you feel like it’s a foregone conclusion that you will end up with a baby.

All of a sudden, as far as the blog was concerned, I had nothing left to say. I wondered if I had simply vomited out all the thoughts and anxieties that were within me and I didn’t need this outlet anymore. What else is there to write? I didn’t want to neglect the blog. We started this thing, Melissa came up with, I must say, a brilliant title in “Then Comes Maybe,” and dammit, we need to stick with it! But it wasn’t just that I didn’t have anything to write. Even worse, I wasn’t feeling anything. The more I thought about it, the more this bothered me. How can something so emotional leave me so emotionless? Shouldn’t I have more to write? Shouldn’t I be feeling something?

The fact was, we had spent months of this journey strategizing, worrying, and being so incredibly stressed out, and for once, we were able to hand the task of making a baby over to someone else. That sounds insanely strange to say, but what the hell? Modern science. When I allowed myself to take comfort in the fact that these fertility doctors were now in charge, my consciousness was able to take stock of how exhausted it was and it said, “You will get no more from me.” My mind was done. My body was spent. It wasn’t about not caring, it was about caring so much for so long that the relief of having someone else in control of our fate gave me the chance to take my emotions out of the equation. What was left to worry about? If these scientific geniuses can’t fix this, no one can. Even waiting for word about egg retrieval and fertilization, I had entered a world where I was hurtling in a direction, but I had no control over where I would land - and for once, that loss of control actually felt good

The feeling of mental and physical exhaustion has been one of the most frustrating ancillary parts of this entire process. It’s hard enough struggling to have a kid, but the all-consuming nature is more than anything I’ve ever experienced. I don’t like being lazy. Melissa will readily tell anyone that I’m a person that finds it impossible to spend a day just hanging out. “Netflix binge” is not in my vocabulary. One episode a day for me, thank you. Lately, I’ve been getting really pissed at myself for being lazy. Even now that we’re on this hopeful baby path, I haven’t been able to get back into a groove. I’ve neglected more work than I’d like, procrastination has taken up far too much of my time, and I haven’t even been able to finish a book in months. Each time I pick up a book, I start reading and realize, five pages later, that I have no idea what I’ve just read. Admittedly, maybe now was not the ideal time to commit myself to finishing Infinite Jest and Finnegans Wake, but no matter what I try to do, my mind wanders. I’m motivated, but lack motivation. I care so much, but can’t focus. It really hit me when I shit the bed in a lecture for one of the film classes I teach. Maybe all of my students just hated Breathless, but a few minutes into my explanation of jump-cuts, as I looked out at a room of glazed over expressions, I realized that my teaching just wasn’t where it should be. After months of focusing so intently on one thing - more intently than perhaps I’ve ever focused on anything - my brain suddenly needs to be re-trained on how to concentrate.

So as we move forward, that’s what I’m working on. Baby steps (no pun intended). Five minutes of productivity, getting through some short stories (thank you Ted Chiang), and finally reentering the world of my own consciousness. I forgot what it was like to be here, but it’s nice to get back.

Watching & Waiting

I’ve come to realize that infertility treatments - particularly IVF - are nothing more than giant, expensive, often painful games of watch and wait (although “game” would imply there’s fun to be had, and I can assure you that there is none of that). Waiting for hormones to kick in, waiting for follicles to grow, waiting for retrieval day, waiting for day 3 numbers, day 5 numbers, waiting for genetic testing results, waiting for your next menstrual cycle, waiting for your lining to thicken, waiting for transfer day, waiting for pregnancy test results, waiting for your first ultrasound, waiting to hear the heartbeat, waiting, waiting, waiting. It’s enough to drive a girl mad.

Without even noticing, a life in waiting quickly becomes a life in limbo - a time when you feel stuck, constantly counting down the days until the current wait ends and the next begins. Minutes blend into hours blend into days blend into weeks, and before you know it, you’ve waited away months of your life with such singular focus that everything else seems to have melted away into oblivion without you even noticing. Nothing matters much anymore except making it to the next appointment, the next phone call, the next milestone. Your previously multifaceted, interesting, lovely life becomes an excruciating slog through a never-ending checklist where nothing else matters anymore except ticking off the next item. Time slows down to an aching crawl, with nothing meaningful with which to fill the molasses-thick drip of each passing minute.

If the waiting doesn’t kill you, the watching certainly will. Bobby and I are doers by nature. If there’s something we want to see or experience or accomplish, we figure out the necessary steps and then we do. We love an actionable plan. We thrive on getting things done. When we say we’re going to do, we do. But infertility and IVF don’t work like that. Yes, you have a protocol to follow and steps to take, but the results of those actions are completely out of your hands. And that helplessness, that loss of power, the cruel laugh at all of our best laid plans - well, it’s disorienting and crazy-making at best.

But the hardest part about the watching is that because there’s nothing you can do to affect the outcome, it feels like everything and anything can affect the outcome. You worry about how every little thing you do, say, or even think can change the course of your treatment. You Google everything and, unsurprisingly, fall down rabbit holes of misinformation that only cause more anxiety (I’m not entirely unconvinced that the internet isn’t just a government tool that exists to feed citizens so much contradictory information that we all become numb and paralyzed into inaction). You lose focus easily, and find yourself distracted by everything and nothing all at once. You fall prey to silly superstitions in a desperate, grasping attempt to feel some semblance of control over a situation that is 100 percent uncontrollable.

This is no way to live.

I’ve learned that despite the all-encompassing nature of this process, you cannot forget to keep living. Life is still happening and each day wasted worrying about an uncontrollable outcome is another 24 hours you’ll never get back. Yes, you can easily fill your days worrying about all the ways things can go wrong, or Googling every symptom you feel and every statistic under the sun, but in the end, where does all of that worry and information overload get you?

In the past, I’ve found it shockingly easy to descend into a black hole of dwelling on every possible terrible outcome in any given situation. I’ve imagined it all. But in the last few years, I’ve made a concerted effort to change that tendency. What I’ve found that works for me (both with worry and with handling negative or upsetting emotions in general) is to:

1. Recognize and acknowledge how I’m feeling and why (the why is the key, so don’t skip that part!).
2. Allow myself a set amount of time (say, 15 minutes) to divulge and fully immerse myself in that feeling. Denying or ignoring emotions doesn’t work (at least, not for me). I know I’m feeling that emotion for a valid reason, and it shouldn’t be neglected - but it also shouldn’t consume.
3. When time is up, so is the worry (or the anxiety/anger/sadness/self-pity/fear/what have you). That’s it. I’ve felt the feelings, and now the feelings have no more control over me. Time to move on. Which brings me to the last step...
4. Divert. Shift gears to a neutral or, better yet, positive thought, feeling, or action and be on your way.

I’ve had to employ this method more times than I can count the last several months, but it has been a lifesaver. Even with the best intentions, I still find it so easy to lose myself in the watching and waiting (and worrying). But by recognizing what is happening to me (step #1!), I’m able to address it and then get back to living. Bobby and I have enjoyed a social life again, made time to get out of the house for museum trips or movies or amazing meals, gone for long hikes with our dog, Molly, and I’ve torn through a huge chunk of my ever-growing reading list. Life may be a giant question mark right now, but it hasn’t stopped. There is no pause button on living. Worry does not alter outcomes (and neither does obsessively watching and waiting). Life keeps on keeping on whether we’re ready for it or not, and if this process has taught me anything, it’s to never miss a minute of it, because you never know what life has in store for you.

Maybe This Was a Mistake

“Maybe this was a mistake."

No, I didn’t say that to Melissa about IVF. I was talking about the blog. After a few posts, especially the most honest and vulnerable ones, people began reaching out to me with genuine concern.

“Are you depressed?” “Are you ok?” “Do you need anything?”

I felt bad. I don’t want people to worry about me. I kept scolding myself with a line from the pilot episode of The Sopranos: “Nowadays, everybody’s gotta go to shrinks, and counselors, and go on Sally Jessy Raphael and talk about their problems. What happened to Gary Cooper? The strong, silent type. That was an American. He wasn’t in touch with his feelings. He just did what he had to do. See, what they didn’t know was once they got Gary Cooper in touch with his feelings that they wouldn’t be able to shut him up! And then it’s dysfunction this, and dysfunction that, and dysfunction vaffancul!”

First I was struggling with infertility. Now I’m bucking masculine convention by talking about my feelings. Oh god, I’m a corny millennial convention. But the great irony of the Tony Soprano quote is the fact that Tony admires Gary Cooper for something that Tony can’t be. Tony spends the next 86 episodes of the show trying to get in touch with and better understand his feelings, and his failures as a character, and as a human, are often based on his failure to do exactly that.

Melissa and I didn’t start this blog to become victims. It was never about sympathy. We wanted to document a moment in time. We didn’t want this experience to define us, but suddenly it felt like it was. I opened up in my writing and I worried that people were now thinking of me as devastated and damaged, characterized by a single struggle. Without a doubt, when you’re dealing with infertility, it can feel all-consuming, but it is still just one element in a multifaceted life. Through our writing, we were looking to, quite literally, define this experience. I don’t mean that in an empowering “grab the bull by the horns,” “you got this” way. I mean that we wanted to define it intellectually. It was a challenge to ourselves. We wanted to see how deep we could go as creators and writers to put into words what we were going through; to go to those places that we avoid articulating. We were seeking words for the pain, anger, and frustration that people in our shoes feel but do not talk about.

The bottom line is, this is like a lot in life - a struggle. Struggle isn’t just hard to go through, it’s hard to talk about. Joy is easy to define. Joy is what everyone shares. It floods our social media feeds. But pain is the most human of emotions. Pain is what makes us human. Later in that Sopranos scene, Tony finds his own nugget of truth: “Could I be happier? Yeah, who couldn’t.” Is there a better expression of what it is to be human? We could always be happier. Everyone has that anxiety and stress that keeps them from being present and keeps them up at night. For us, if it wasn’t infertility, it would be something else. Melissa and I aren’t more or less happy than everyone else, we’re just seeking to put our experience out there.

The bottom line is, like Gary Cooper, however we all feel, we all have shit to do. And the world, as a whole, is indifferent to our struggles. Bills need to be paid, work needs to be done, the dog ain’t going to walk itself. Life doesn’t stop for our feelings, so despite our struggles, we get out of bed in the morning and get to work. Speaking to emotion, understanding our oh-so-unmasculine feelings will not change our ability to do what we have to do, so why are we all so hesitant to be open? No matter what happens, Melissa and I are going to keep going forward in life. It would be one of life's great devastations to not have children. But don’t we all end up with great devastations? As Melissa likes to tell me, “We all have our cross to bear.” What can you do but move forward? And in the moment, what can you do but grin and bear it?

This doesn’t mean we have to sit around complaining all the time, but what’s wrong with genuine deepness and honesty? We’re conditioned to avoid and hide our pain. Pain is awkward. We don't know what to say. But pain is as much a part of life as everything else. We don’t need to hide how we feel to be strong silent types. It’s surface-level bullshit. Tony storms out of Dr. Melfi’s office and of course, proceeds to have another panic attack that will drive him back to her. Hiding the struggle does nothing. Vocalizing my pain and frustration hasn't made it more real; instead, it's made me feel free.

Baby Talk

Talking about infertility, I’ve learned, is as hard for the people being confided in as it is for the people doing the confiding. Like a death, an illness in the family, or the loss of a job, infertility often leaves people scrambling for the right words. And since the chances that any individual has personally dealt with infertility are much lower than the chances that they’ve dealt with, let’s say, a sick loved one, it’s nearly impossible for them to truly relate and empathize. So, understandably, in situations like these we all fall back on the old reliables: the comforting, the sympathies, the encouragements.

What makes infertility hard to talk about is that there is no safely assumed outcome. Yes, you may end up with a child, but you will go through physical, mental, and emotional hell to get there, all while draining your bank account. And it’s just as possible that after all that, you won’t be able to get pregnant. Or you will and you’ll miscarry. There’s no guarantee of a happy ending or that time will heal this wound. It’s a shitty situation where even the positive outcomes come with hefty price tags, and there’s no escaping that reality, which often makes talking about it even more difficult. Sometimes when you’re facing an uphill battle, it’s hard to hear ‘everything will be ok’ and ‘it will all be worth it.’ Will it?

Experiencing this rollercoaster in such a public way has encouraged many people in our lives to reach out with their own stories. We’ve heard about IVF successes, of course, but we’ve heard about just as many failures - the people who didn’t have the means to attempt treatment to begin with or only enough for one cycle that didn’t work; the ones who figured out a way to swing it but suffered through failed cycle after failed cycle; the women whose bodies turned against them as they went through the rigorous process of injections and drugs; and the people who suffered miscarriage after miscarriage and still can’t figure out why. Talking to these people has been eye-opening, and gut-wrenching, and heartbreaking. But going through this process has taught me how to receive their stories, to listen deeply, and to respond in a meaningful way.

I’ve found that most people are like me and Bobby - they’re often afraid to talk about their problems because it feels like an emotional unloading of an overwhelming weight on an unsuspecting victim. In turn, our victims respond the best way they know how - with pity, sympathy, and encouragement. It’s human nature to hear something sad or difficult or upsetting, and react with as much light and love as we can muster. Doing so helps us feel as though we are protecting our loved ones from their own hurt by bombarding them with good vibes and uplifting energies. But there are some situations - infertility, for one - that a positive attitude can’t change.

Looking back, I can remember so many times in my life that someone I cared about was hurting and I didn’t know what to say. But this experience has taught me that the best thing you can do is be raw, genuine, and honest, and not succumb to our natural inclination to provide uplift, because that’s impossible. Sometimes people just want to release the emotions that are weighing them down without having to accept and then mirror their loved one’s positive thoughts to assure them that they’re ok. Sometimes we’re not ok - and that is ok - but acting like we are is exhausting. So those who are struggling keep their secrets and hold onto their burdens until they become too heavy to bear alone.

What I’ve learned about myself, and many others I’ve spoken to, is that often the best way to respond is to allow the other person to feel deeply, to not protect them from their feelings but divulge with them. I’m hardly suggesting that we never turn to positivity and encouragement to support someone who is suffering, but rather that we use those words more thoughtfully, and with an acknowledgement of their situation. To tell someone who is facing infertility that it sucks (literally, in those words), and that it’s a terrible thing to go through, and they must be feeling awful is not going to turn them into a ball of tears (well, it might, but only because they’ve been dying to hear those words).

You are not telling them anything they don’t know.

Quite the opposite - by giving their feelings a voice, you’re telling them that it’s ok to be sad, frustrated, and pissed off around you, that their situation is crap, and there’s no two ways around it, but you’re here to listen. You’re acknowledging that the pain they feel is real, and you don’t believe that your words are going to change that (because they’re not). What they hear is that you’re there to walk this road together - that you can’t carry the weight for them, but you can be a crutch when it becomes too heavy to shoulder alone. These are powerful sentiments for anyone who is struggling - not just with infertility but any profound, life-altering situation. And sometimes they can be the difference between a secret silently suffered and a burden shared.

Back to School

My previous two posts have been so damn heavy…

So I thought it would be nice to change gears and talk about… school. IVF school.

Preparing for the IVF process is overwhelming. Before ever entering a fertility clinic, months (or years) of trying to have a child to no avail leaves couples juggling the existential question of whether or not they will ever have a child. Then there’s the financial hurdle to confront: are they even in a position to pay for IVF? Then, once they decide to move forward, a couple is hit with an incredible amount of information. They’ve got multiple appointments a week (eventually every day), blood samples to give, medications to take, an egg retrieval, and the big one: shots (and in all fairness, almost all of the blood sample, medication, and shots burden falls on the woman). An IFV newbie knows only that there are a lot of shots, administered at home.

Fortunately for me and Melissa, our fertility clinic offered a class to help prepare us for this daunting process. What we didn’t realize, however, is that while a class is great for preparation, it’s sort of like peeking over a giant cliff before you dive into a huge lake below. You want to know what’s ahead to ease your stress, but looking ahead ends up doing the opposite; something that up to that point was theoretical is now laid out for you in material form.

As we’ve written before, the IVF process is one of isolation. A couple goes through it with only themselves, their doctor, and some nurses. But when we walked into IVF class we walked into the fertility clinic’s conference room with two other couples. One would think that finally sharing a room with fellow couples who know exactly what the others are going through would lead to a sort of kumbaya, coming-together moment, but nothing like that happens (at least, it didn’t for us). Every couple keeps to themselves. There is no handshake, no icebreakers, no “nice to meet you.” We all came in with our heads down, ready for business, avoiding eye contact.

It was as if we were each wary of invading what is a very private process for every couple involved. We all came into the class with baggage, and we knew every other person in the room had their own baggage but in a different way. Their story is unknown and known to us at the same time, and we avoided each other out of a sensitivity to the delicateness of everyone’s situation. Each infertility scenario is completely different. Statistics don’t mean anything, what happened to someone else doesn’t mean anything. To meet and bond with another couple means taking the risk of seeing their positive result when you could be stuck with a negative one. It’s as if we’re wary of sharing the luck, good or bad, we may be headed for.

The nurse handed out sample schedules, providing a sense of what the weeks of the IVF cycle would look like in terms of daily doctor's visits, medications, and injections. We were given what resembled an epipen and some hypodermic needles to look at and handle. Immediately, we were a little bugged out. The nurse explained that Melissa would need to give herself nightly shots and, eventually, I would have to get involved, administering a big fat needle, right to the ass cheek, every night for two weeks straight.

As the nurse explained things, I tuned in to my heartbeat. I could feel it gradually increase, both in speed and pressure, as the session went on. I caught myself sighing every few minutes, taking deeper and deeper breaths, and I realized I was simply trying to catch my breath, normalize my breathing, which had grown erratic from the stress. At moments in this infertility process I’ve had to stop and wonder, “Geez, we have a blog, I’m so stressed out, I’m irritable. I mean, it can’t really be this bad. We’re going through a thing. It’s months of our lives. It will be over at some point and life will go on. Am I just being over the top with this?” But as I sat there in the IVF class, and took stock about how, literally, each sentence the nurse spoke ratcheted up my stress level just a little bit, I realized that this is exactly what had been going on, day by day, since I got my first diagnosis from my urologist in September, and in actuality, even before that, as month after month went by with disappointing pregnancy test results for me and Melissa. I finally saw that this is what infertility is. It’s bad news, frustrations, questions; each drop is tiny, but tiny drop by tiny drop these stresses fill the well of your subconscious.

One poor guy in the class had a lot of questions, and each time he asked a question he was visibly more stressed out. His hands would go through his hair, he would take deep breaths, and his eyes would open wide in shock at each answer he got and each needle he saw. When the nurse got to the big needle he looked like he was going to puke. As I reflected on his visible stress, coupled with the stress I sensed in myself each time I sighed, I realized us guys were taking it, at least on the exterior, way worse than the women. The women are forced to carry the weight of the process in terms of shots, hormone changes, and bodily impact, but it seemed it was the guys who were visibly exuding fear.

The class ended much how it began: no goodbyes, no parting gestures of any kind. We all walked out of there slightly more prepared but even more nervous than before. In that moment I realized: we wouldn’t meet these people, we wouldn’t share our stories, and we wouldn’t leave on the same road. But the roads we set out on would be very similar, fraught with many of the same hurdles, the same fears, the same anxieties, and, we hoped, the same happy ending.

You're Still Here

Hi. How are you? I realize I probably haven’t asked you that in quite a while. But I’ve noticed that you’re still here. And I want you to know that it means everything to me.

And I’m so very sorry.

I admit, I’ve been pretty self-absorbed the last few months, and that’s not fair to you. It’s probably felt downright awful sometimes to be you around me. See, what I didn’t completely forget, but subconsciously ignored, is that your life has continued, even while mine has felt like it stopped. When you leave my house/hang up the phone/send the email/end the text, your life and all its ups and downs are still there. And although I’ve asked you about them from time to time when I briefly came up for air from my own issues, I probably didn’t give them the attention they deserve; the attention you deserve. It’s not that I don’t care. I do. I always have. It’s that infertility forces you to wear blinders - not to hurt others, but to keep yourself from getting hurt.

It’s not you, it’s me. And I’m sorry.

I hate excuses, but here’s mine anyway: infertility is all-encompassing. It turns your life upside-down and into a series of steps and to-dos, all so pivotal and significant to the outcome, each so delicately balanced and hinged upon the next. It’s like walking a tightrope, but not the kind that stretches in a straight line from point A to point B. No, it’s full of twists, and turns, and ups, and downs, and you never know if you’ll make it across or if you’ll have the world ripped out from underneath you. And as soon as you traverse one span, there’s another. There’s no rest; there’s never any rest. Life becomes a never-ending parade of tests and appointments and medications and injections and procedures and rigorous schedules and lengthy checklists and dos and don’ts and can-yous and will-yous and have-yous. Your most private thoughts and worries and concerns and body parts are no longer yours alone and you feel naked and isolated and unable to catch your breath. And there are so many casualties along the way, and you have been one of them.

I’m so sorry.

That time I backed out of our dinner plans at the last minute? I had just taken another negative pregnancy test and couldn’t bear the thought of enduring the everything’s-ok charade. When you texted me about your promotion at work and I didn’t respond for days? I had just found out that it was a near impossibility that we would ever conceive naturally and was too busy mourning the loss of my most sacred dream to notice. Your phone call that went unanswered and unacknowledged? We were elbow-deep in trying to come to terms with the fact that we may never have children. When you shared your pregnancy announcement and I could barely muster more than a weak congratulations? I was trying not to fall apart and crumble into a heaving, sobbing mess, all while being sincerely happy for you. I could lie and tell you that I wasn’t behaving as selfishly as it seemed, but I was. It was never my intention, but sometimes intention and action are distant cousins at best.

You have always been important to me, even if I didn’t always show it. And for that, I’m eternally sorry.

One day not too long ago, I told Bobby, “I can’t wait until the day that I’m not thinking about something.” I’ve forgotten what it feels like not to be completely consumed by one thing, to have a moment where my brain can rest, when my mind can catch up with itself and take stock of what’s going on and how I feel about it. This thing has taken over every fiber of my being, with barely enough space left for my responsibilities to my husband, pets, job, and home, and unfortunately, that’s left no room for you. But you have your own thing that consumes you, your own mountain to climb, only it’s something else. And I’ve been delinquent in my emotional availability and in telling you that even if it doesn’t seem like it, I’m here for you, too.

Did I tell you that I’m sorry?

But you’re still here. You never left. And even when I feel the most alone, you’re there. You’re there in your thoughts and your well wishes, your prayers and your silent hopes. You’re there in phone calls and emails and text messages and visits. You’re there when I need you, and even when I don’t want you to be there but most desperately need you anyway. You’re there when I’m angry and sad, and when I’m optimistic and upbeat. You’ve never wavered in your support and love, even when I was at my most unlovable.

So how are you? Are you still listening? Of course you are. I’m here now. I’m sorry about before, but now I’m here. I’m still consumed. I’m still overwhelmed. I’m still struggling. But I’m aware now, and I’m here, and I know all the I’m sorrys can’t make up for how I’ve been, but I have to start somewhere.

You’re still here, and I’m so very grateful.
 

The Price of Infertility

Much of this blog is (and will continue to be) dedicated to the emotional, mental, and physical effects of infertility. But no discussion of infertility is complete without an examination of a much more tangible effect - one that often precludes a couple’s fertility journey: the financial one. There’s a devastating lack of insurance coverage for fertility treatments in this country, and even when insurance does kick in, it rarely covers everything. For far too many couples, this immense financial burden is so devastating that it stops their dreams of having a baby right in their tracks. For those couples, treatments like IVF are not even an option; if it doesn’t happen naturally, it doesn’t happen at all. And for those who can scrape enough money together to afford just one cycle, they often feel pressured to make risky decisions to boost their odds of conception.

When we first started looking into IVF many months ago, we found plenty of answers to our questions about the procedure itself, and some information about the testing leading up to it. What we were missing (and especially as the Type As we both are) was a step-by-step breakdown of what IVF entails and what it costs. We saw plenty of numbers being thrown around, but those numbers differed wildly, from the low thousands to $30,000 or more.

With the stress of our diagnosis, the treatments ahead, and, oh yeah, the fact that there is still no guarantee we will have a baby at the end of it all, we now faced another giant question mark: the massive blow to our bank account. I’m self-employed and while Bobby has a traditional nine-to-five that provides insurance coverage, like many small businesses in this country, his company’s insurance plan options offer no fertility coverage. None. And it’s not like we went for the skimpy insurance plan. I’m a living kidney donor, so we always make sure to get the best insurance plan offered through his job. We’ve been told that some of our diagnostic testing will be covered (i.e. the first - and only the first - visit to the urologist, blood work, and the like - essentially anything that happened before the infertility diagnosis), but the actual IVF procedures, medications, etc. are all out of pocket. (Note: We’ve already seen pushback from our insurance company on the diagnostic testing, so even that coverage is up in the air at this point).

Insurance companies robbing the infertile

While many states have mandates that a certain percentage of fertility treatments have to be covered, and some companies opt to offer it of their own accord, there are countless people in the same boat as us (I’ll save my rant about how we’re one of the only developed countries that doesn’t offer fertility coverage for another post). IVF and infertility are already full of what-ifs, and price shouldn’t be one of them. So we decided that in the name of transparency, we’re going to do a series of updates on where we currently are in the process, how much each step is costing us, and the total we’ve paid out of pocket (or are committed to pay) so far (hell, we’ve already talked in depth about Bobby’s sperm and my transvaginal ultrasounds, so why get sheepish now?). While every couple has a different experience with cost (and there are many factors that affect prices), we hope that we can offer a bit of insight for those who are facing this long road with us.

Here’s what we’ve done so far:

• Urology: Bobby had three semen analyses done before we received the official diagnosis of infertility. Bobby is in the midst of pushing his insurance company to cover all of these visits under “diagnostic coverage.” Cost: TBD/pending insurance coverage

• Natural supplements: While Bobby was undergoing treatment for his morphology issues, he decided to go bonkers and buy every single supplement he found associated with fertility (like I said, we’re Type As). Conservative estimate of additional supplements: $600 (some are ongoing)

• First fertility specialist visit: When it came time to see a specialist, we did a lot of research and decided to go with IRMS (The Institute for Reproductive Medicine and Science at Saint Barnabas) in Livingston, NJ, which we’d heard and read a lot of good things about. (BONUS: If I do get pregnant, Saint Barnabas has an incredible NICU). During this first visit we met with our doctor, discussed options, gave blood for health screenings and genetic testing, and met with the financial coordinator. I also had a pap smear and a transvaginal ultrasound done to see how my ovaries looked and how many follicles I have (good marks on both counts). Co-pay: $30

• Day 3 blood draw: On the third day of my next menstrual cycle, I had to report back to the clinic to have my blood taken for baseline hormone testing. This gives the doctor a picture of my hormone levels so she can tell if my reproductive system is functioning properly. Luckily, everything came back perfect. Cost: TBD/pending insurance coverage

• Saline sonogram: Between days 5 and 10 of your menstrual cycle, patients have a saline sonogram performed. I went on day 6. I was a little nervous about this procedure because I had read that many people found it painful. Essentially, this is a vaginal ultrasound where a saline solution is injected into the uterus so the doctor can get a clear picture of your uterus and evaluate its health, as well as identify any growths or abnormalities. I did experience some discomfort during the procedure, but it was very quick (a few minutes) and I had only mild cramping afterwards. My uterus checked out a-ok. Cost: TBD/pending insurance coverage

• Carrier testing: As I mentioned in my last blog post, Bobby and I are opting to do everything we can to achieve the best possible outcome (a healthy baby) in one round of IVF. In addition to having our embryos genetically tested (that comes later), we also had our own blood tested to see if either of us are carriers. According to Counsyl (the organization that conducted our DNA tests through our fertility clinic), “Carrier testing is a way to see whether we carry certain mutations in our DNA that may not affect us, but can cause our children to inherit a disease. If both parents are carriers of the same mutation, their child has a significant chance of suffering from a serious genetic disease, like cystic fibrosis, spinal muscular atrophy (SMA), fragile X, sickle cell disease, or Tay-Sachs disease.” Fortunately, both of our tests came back negative. Estimated out-of-pocket cost: $67.32 x 2 tests = $134.64 (pending insurance coverage)

Here’s where we are RIGHT NOW:

• Round 1 medications: For us, this was the first major cost of the process. According to our clinic, most couples can expect their medications for one cycle to be between $5,000 and $8,000. However, because I don’t have any fertility issues myself or any underlying health concerns, our clinic estimated our cost to be on the lower end - somewhere between $4,000 and $5,000. Since we’re paying out of pocket, our clinic was careful to order slightly less medication than I will likely need in my first round so that there is no risk of overbuying and paying for medication I won’t end up using. We ordered through a specialty pharmacy that offers discounts for out-of-pocket patients. Below is a list of all the meds and prices for the first round (I will most likely have to order more of certain medications before the cycle is complete, depending on how my body responds and other factors. Therefore, our total round 1 meds cost could increase):

Out of pocket meds:

• Follistim: 2 units at $862.80 each: $1,725.60
• Menopur: 10 units at $82.99 each: $829.90
• Ganirelix: 4 units at $139.95 each: $559.80
• Pregnyl: 1 unit at $101.09 each: $101.09

Covered by insurance (with copay):

• Medrol (prednisone): $10
• Doxycycline (antibiotics for Bobby): $10
• Doxycycline (antibiotics for me): $8.64
• Progesterone in oil: $10

Total for cycle 1 medications so far (including pharmacy discounts): $3,055.03

• IVF with ICSI (Intracytoplasmic sperm injection) and Embryo Freezing: This is the big whopper of IVF costs. It covers everything performed by our clinic while in-cycle, including monitoring (the blood draws and ultrasounds I will be getting almost daily), procedure/embryology (egg retrieval, sperm prep, ICSI, culture, assisted hatching, and more), embryo biopsies for genetic testing (PGD), embryo cryopreservation, and up to one year of embryo storage. Normally this would cost $17,175, but the clinic provides a discount for out-of-pocket patients. Cost due in full prior to cycle initiation: $14,000

• Anesthesia/facility fees: The retrieval process is performed by my IRMS doctor, but the procedure requires anesthesia and the use of St. Barnabas facilities. Cost: $1,600

• Preimplantation Genetic Screening (PGS): While our clinic, IRMS, does the biopsy of our embryos, the actual testing is done off-site through a reprogenetics lab. We won’t know final costs until we know how many fertilized embryos we end up with (if any). Cost: $850 base fee + $250 per embryo

GRAND TOTAL OF PAID AND COMMITTED COSTS SO FAR: $19,285.03