I Want To See My Story

Social media (okay, Facebo.ok, I am not on any other social media other than Pint.erest) seems to be exploding with beautiful, thoughtful posts about infertility. I have seen a man's perspective on his fertility journey with his wife, I have seen a fertility doctor write about what it was like to also be a fertility patient and move through her journey, I have seen so many women write about the pain and effort to conceive a baby.

It is so important that these stories are out there, "normalizing" the experience that so many of us have, putting it all out there -- the collection cups, the nightly injections, the cycles of hopes and dashed dreams, the conflicted feelings when others get pregnant around you and you're still sticking your butt with an inch and a half needle filled with progesterone in oil.

The only thing is, the stories I am seeing (and maybe this is just my feed, which is filled with fellow fertility warriors who "won") are those where at the end, everything comes together. The journey is hard, the losses and setbacks and side effects from various infertility treatments are hard. But in the end of EVERY SINGLE ONE OF THESE STORIES, they get the prize. The positive test. The sac with something in it. The rapid fluttery heartbeat. The story ends with a pregnancy, a baby, an "and then it all worked out and was totally worth it and we were so happy we could burst."

I know this is a fairly common story. I am not denigrating it. It's a beautiful story.

It's just not mine.

I want a story where the journey is hard, and the losses and setbacks and side effects and people passing you by on the pregnancy train all happen, and YOU DON'T GET PREGNANT. I want a story where in the end, you decide to end treatment and never get to see a grainy picture of stubby arms and legs waving, never get to hear the underwater heartbeat that you so hoped to have in your memory files.

I know that my story is not yet over, but I want a story where it didn't work out the way you originally thought it would. I mean, of course by going through infertility treatment and all the indignities and pain and unknowns wrapped up in that experience, you aren't experiencing having a baby the way you do when you are 8 and playing with a babydoll. Most little girls stuff a pillow or a basketball under their shirt. They don't pretend to be inseminated or have their ovaries monitored. There's no "Okay, mommy, let's give you your shot so you can have a baby!" play when you're little. Also, having one pregnancy doesn't mean you'll achieve another, and the pain of having your family size decided for you by reproductive roulette is no picnic, either. No one tells you when you're small and saying you're going to have two kids and a dog and a cat that the number of kids simply isn't up to you, in the end.

I don't want a depressing sob story -- I want a story where it's OKAY that things didn't work out as planned (or rather as plans changed because the original plan wasn't going to bring a baby, ever). I want a story where you end treatment and you are still waiting to adopt and you are ACCEPTING this, although perhaps a little grudgingly, because all around you everyone is getting pregnant, even people who previously had to go through gads of shots and monitoring to do so. You seem to be alone, with a very, very small number of other people in your situation at this point.

It is a very lonely experience to read these stories and see just how many people WERE successful, for whom those stories on the internet are massively important. Because it's their story, reflecting their struggles to get where they are.

But I want a story that mirrors my experience. The closest I've gotten is an amazing graphic novel/memoir hybrid by Phoebe Potts, Good Eggs. (You need to read this book--it is funny, and true, and I am going to say how it ends so if you don't want to know scroll two paragraphs down NOW...although to be honest I don't think knowing the end changes the beauty of the book but enhances it.)  She doesn't have a baby at the end. They end treatment after exhausting the number of IVF cycles that Massachusetts insurance will cover (because Massachusetts HAS INSURANCE COVERAGE FOR IVF, by the way), and decide to pursue adoption. I just looked her up, and she is writing a second graphic novel memoir, Too Fat for China, about her adoption process experience. I didn't see anything about her being successful yet, and Good Eggs was published in 2010. Maybe she does have a baby and is just blissfully private about it, but it really illustrates that IT TAKES A LONG TIME. And IS NOT EASY. And that there are setbacks in any process.

I love Phoebe Potts for her honesty and humor in her book, but I cried as much as I laughed when I read it. And at the time that I read it, I still had hope that I was going to get pregnant. But I held on to what she said about letting go of infertility treatment, and it came to mind when we made our same decision. That was a story I could relate to, even though I didn't think her story was quite so close to my story at the time. It turned out to be closer than I ever could have imagined all those years ago.

I was complaining to Bryce last night after reading another infertility story on Fac.ebook that ended in a pregnancy. "Where is OUR story? Where is a story that DOESN'T end this way? Why doesn't someone put THAT up there?" Bryce's response was, "Why don't YOU?" I argued that we don't have an ending. He argued that was sort of the point. And so, here is our infertility story, from beginning to the point we're at now, in all its glory and devastation and unfinishedness:

One beautiful day in October 2009 Bryce and I were married in our backyard (after getting married legally at our favorite Mexican restaurant a week earlier), as fierce winds blew and bright sassafras leaves swirled around us. Our ceremony included the Blessing of Hands, which made me cry as I said it because of the lines, "These are the hands that will tenderly hold your children. These are the hands that will help you to hold your family as one. These are the hands that will give you strength when you need it." I had no idea at the time that these words would be so intimately intertwined, that we would need strength to make that family happen, and that it would take a long time and be filled with uncertainty. A month before our wedding we had had our initial consult with a fertility clinic, already knowing that Bryce had male factor infertility and suspecting that all was not right with my reproductive system either, which was confirmed with an initial diagnosis of "dysfunctional ovulation." We knew going in that it wouldn't be easy. I was 33 and Bryce was 35.

The day of our wedding I was in my dress, with my hair done and makeup half done, when the FedEx truck came and dropped off my first Ovi.drel shot to be used for our November IUI. We never got to try on our own. We were told we could if we wanted to waste time and be incredibly frustrated, to feel free, but with our set of issues it would pretty much just ruin sex for us. So we went straight to IUI, even though our doctors told us IVF (in vitro fertilization) was our best bet. IUI could be a diagnostic tool of sorts, show us how my ovaries stimulate with the injectible meds, before we went to the big (expensive) guns.

We did six IUIs before turning to IVF. Each time I felt I could have gotten pregnant, even though our sperm numbers weren't within the range that had a good prognosis, and my ovaries seemed to be all or nothing performers -- great for IVF, not so much for IUI where if you get too many follicles they either cancel you or convert you to IVF. I was a hormonal mess, shooting myself up in the belly with Folli.stim and going in for monitoring all the time to make sure my (now diagnosed) PCOS ovaries didn't become overzealous. I gave a lot of blood. Bryce was a saint, especially through the Cl.omid cycles, which I felt were worse emotionally than the injectible ones (until we started IVF and had much higher doses). There was a lot of crying. There were a lot of Exorcist moments.

When we started IVF in 2010, I was excited. It was supposedly our silver bullet. I had great ovaries for IVF. ICSI, Intracytoplasmic Sperm Injection, would overcome our male factor. Everything would be AWESOME.

Except it wasn't.

I had thought that when you do an IVF cycle, frozen embryos were a given. You'd have lots of eggs surgically retrieved, and then they would fertilize all the mature ones, and then you'd have more than two or three embryos and so would have to freeze the rest to be ethically responsible.

We didn't have any frozens. We didn't even have any embryos make it to blast (five days of development) because we had so few they were worried we'd lose more if we extended. We transferred two Day Three embryos, one 8-celled and one 6-celled, and had "leftovers" that weren't good enough to freeze. I had 10 eggs retrieved, only 7 of which were mature. We were devastated that we hadn't had a great turnout on our first IVF, especially knowing that with no frozens we'd have to do another fresh for best-case a sibling or worst-case another try. But, we held on to the hope that we'd get pregnant. Which we didn't. And I received that call at school, in the first week of school, thankfully when I didn't have students around, but still. It was awful.

But we got back on the train and did another IVF cycle, hoping we'd have better luck. This time we had 11 retrieved, 8 were mature, but only 4 fertilized. We transferred three Day Three embryos, NONE of them 8-celled like they are supposed to be, but they had no fragmentation so they were supposed to be okay. No frozens, again. While waiting to see if I was pregnant, I hyperstimulated. I had half a liter of fluid removed from my abdomen. I was told getting OHSS (Ovarian HyperStimulation Syndrome) during the wait wasn't great, but that there was a slightly higher chance I'd get pregnant because of some correlation. I defied the correlation. I wasn't pregnant. Again.

We went to a different plan after that one, one that addressed egg quality. The PCOS had been the focus before, but it was apparent our embryos weren't great and our haul wasn't great and it was fairly upsetting to have what I called "The Great Whittling" from number of follicles to number of mature eggs retrieved to eggs fertilized to embryos transferred.

We did a "what the hey" IUI in between, to take a break from IVF without really taking a break. We had our best sperm sample EVER, which made me believe that we could have a "miracle" IUI pregnancy after two crappy IVFs. No miracle for us, and so back on the IVF train we went, but this time with the egg quality protocol. I drank gads of wheatgrass juice, took CoQ10 supplements, ate tons of "fertility friendly" foods, all organic, I gave up coffee and alcohol before and during cycles. I did acupuncture and yoga and guided meditation, along with a whole lot of other crazy hoodoo. Bryce begged me to not do so much, because I was taking on too much responsibility for success or failure when really, none of it was within my control. I wouldn't listen. I was determined to do everything to Make. It. Work.

This was summer 2011, and for the first time we had frozens! I had 12 retrieved, 10 mature, and 7 fertilized...but ALL of them kept dividing. We transferred three gorgeous 8-celled embryos and had two blastocysts frozen for another try or for a sibling. We were ELATED!

Then we got the call that we were pregnant, but the call started with "I'm sorry." This was because our HCG number was a whopping 12, which is very low since they like to see over 50 in general for a healthy pregnancy. A 12 typically means a chemical pregnancy, where you have a positive HCG but development has halted. Except my numbers kept going up, though not at the rate or number that indicated a healthy pregnancy. I relished in this weird pregnancy, feeling a little victory over fate when we had a rise instead of a drop. I got to go have an ultrasound after two weeks of wonky tests, with the caveat that this wasn't to see a heartbeat necessarily. It was to see if anything "real" was truly in my uterus.

There wasn't. But my numbers were 1161, which meant SOMETHING was SOMEWHERE. And it was -- I had managed to get pregnant, but way up in my fallopian tube, my right one, and I needed surgery scheduled that night to remove it. I have pictures of that thing. My tube was swollen and starting to rupture. It was bleeding before they removed it. I didn't have any signs of pain until the day before the fancy ultrasound that revealed my wayward baby. I was devastated. Bryce was devastated. We were inundated by support and visits and flowers and cards. It was a horrible tragedy, but we had hope -- I could get pregnant. In the wrong spot, but I could do it. So maybe this wasn't an impossibility. Still, it was tough to start my tenure year teaching in a split position between two new buildings while recovering physically and emotionally from the trauma of the ectopic fiasco. Luckily, thanks to amazingly compassionate administration, I was able to take two weeks at the beginning to heal in every possible way. It was hard, but we had frozens. We could pick up the pieces and try again.

We did the frozen transfer in December. I didn't get pregnant.

Then it was 2012, and we went into our fifth IVF cycle, the fourth fresh one, We had frozens again, and we transferred three at the 3-day stage again, because while we had a boatload of eggs retrieved (over 20!), we still didn't have an overwhelming amount of embryos at day three and so they felt better to get them in my uterus sooner than later. I didn't get pregnant.

We did the frozens in late July, and received a call directly from our doctor... we were pregnant! And

This is what the joy of a truly positive test looks like. 

not just pregnant, OVER 50 PREGNANT! Not an overwhelmingly robust number at 61, but still, we were pregnant and there was no "I'm sorry." It was amazing. I had never felt so happy since my wedding day, and our joy was palpable. Our numbers kept rising, and I had nine beautiful days of milking every moment of our first uterine pregnancy. On the last day of July, I had cramping when I went to visit my grandmother at her assisted living apartment, and I ignored it until I felt what I hoped wasn't bleeding. It was. I had to leave, in tears, for my clinic (which thankfully was less than 5 minutes away), both telling my grandmother that I was finally pregnant and that I was probably miscarrying...all at once.

They saw a sac although I was bleeding heavily, and sent me home for three days of bed rest and bloodwork and hoping against hope that everything would be okay, that I would be like so many stories where there's a scary bleed but it all turns out fine in the end. All the bedrest in the world wasn't going to stop what had started from finishing. My numbers dropped by 1800 points, and I lost the pregnancy. I had a few weeks before school started this time to come to grips with this loss. This was harder for people to grapple with and there were fewer flowers/cards/visits. Surgery is easier to identify with than loss involving blood and vaginas. We started really feeling like a bad luck charm, like we were reminders that bad shit happens to good people and maybe it was contagious. To be fair, we also withdrew quite a bit. It's hard to be social when your hopes of family are crumbling around you and you have the potential to become a messy puddle at any time. There was not a small amount of bitterness. We felt as though we were stuck standing still in time, while everyone else became parents around us. Friends had preschool aged children now. Friends had three children. Acquaintances met boyfriends, got engaged, got married, and got pregnant in this time, and we still were unsuccessful.

We started looking into adoption, and the agency orientation (not our current one) that we went to left us feeling that we absolutely had to get pregnant, because as two over-35, both divorced, therapy-utilizing individuals, no one was going to want us as parents. This is when we decided egg donor was our best bet. Obviously something was wrong with how we were doing things. We needed a change. So we entered the crazy world of approving a match made for us by our clinic, of picking someone who was a reasonable facsimile for me, but younger and with feasibly better egg quality, who had proven pregnancies for other couples under her belt. We felt so hopeful -- egg donor cycles had way higher success rates, and while we had to mourn my genetics, we could still be pregnant. In theory.

It didn't work. We did a fresh and a frozen, all blasts, and had six 2PNs frozen. This was a blow, a terrible blow. Why didn't we have answers? Why was nothing working when we kept changing things up? What was wrong? Was this even possible?  We decided to go the second opinions route. We also decided to look into a different adoption agency, one which left us feeling hopeful that pregnancy didn't have to be our route to parenthood.

Scary Lov.enox shot, although the springloaded design
was neat as it hid the sharp automatically.

We weren't I wasn't ready to move on from the pregnancy path, though. We chose to go to a clinic in Buffalo, which had excellent success rates, a great lab, and was willing to do more experimental things since they weren't part of a hospital. One of our previous doctors from our previous clinics had moved there, so while it was new...it wasn't ALL new. Another option was a famous clinic in Colorado, but the cost was just astronomical and no one can offer you a high enough success rate to guarantee that you won't have to save money for alternatives. If we'd gone with them maybe we might have gotten pregnant, but if we hadn't (and I suspect we wouldn't have), we'd have exhausted all our funds for adoption. So we did a whole bunch of tests, including a horrific Beta-3 Integrin test that seemed like someone vegetable peeling my uterus while I WAS NOT SEDATED, but everything came out fine. I did find out I am heterozygous for a blood clotting disorder, so Loven.ox was added into the protocol, just in case. That is a nasty shot. But, if it could help get me pregnant, sign me up for purple bruising and painful injections! I still have discolorations from those bruises on my tummy.

We decided to do sperm donor. We went back to my eggs -- it appeared my eggs were fine and not the culprit due to some testing and the data from the egg donor cycles which failed, but we decided an unknown we hadn't explored was sperm. So we went through the bizarre process of picking a sperm donor (very, very different from the egg donor process -- all electronic and a LOT more information available), and found one creepily similar to Bryce. In 2014 we did another fresh cycle, with the intent to split between Bryce and donor sperm, just to give our own material one more shot with a different clinic, different lab, different protocol.

My cycle got canceled. My estrogen levels were getting close to hyperstimulation, so they dropped my dose back on the injectible meds...and my estrogen crashed. No transfer for me. I had NEVER had a canceled cycle, ever. It was a blow and didn't make us feel great, especially since I had mentioned that I lean towards hyperstimulation and the levels made me nervous. I'm not a doctor, though. Just someone who had done 8 IVF cycles at this point, 6 fresh and 2 frozen. I felt like I knew all the ways my body could thwart me, but whatever.

We were successful in the summer with completing a cycle, and even got past three-day with our own material, transferring our 23rd, 24th, and 26th embryos. Unfortunately, at this point when sitting in the transfer position, legs in stirrups, flash of light on the screen, my first thoughts were "Bye guys, you had a good run, but you're probably going to die." This thought did not cause my negative test. If thoughts had that kind of power I would have been pregnant a zillion times over, because I went whole hog with the whole positive thinking thing in our earlier cycles, to the point where Bryce was seriously worried about my well-being. I was just being a realist. I had sent a lot of embryos to their doom. These followed the others to oblivion.

We did one more cycle, with the A-team set of frozen donor sperm embryos -- #26 and 27. It was our chance to see, was it the sperm? We were super hopeful. This sperm donor also had proven pregnancies notched on his belt, and we allowed ourselves to believe that we could be another glorious hatch mark.

I peed on a stick with this cycle before the beta blood test, even though I know better. It was a faint line. A faint line can mean a pregnancy, so I was cautiously excited... maybe we were finally there! Maybe all would be fine after all! It was the sperm! But then the call came, and it was negative. So maybe it was a little embryo that started to attach, then changed its mind. I'll never know.

We had two blasts left that were Bryce's sperm and my eggs, and the six 2PNs from the egg donor/Bryce's sperm. We tried two more times to transfer them. I got canceled each time. A hysteroscopy revealed uterine scarring before our last transfer attempt. My lining just wouldn't grow. We finally decided that we just couldn't do this anymore. I was a disaster at school -- I had always mostly been able to contain my grief at work, but now it seeped out of my eyes at the most inconvenient times and couldn't be contained any longer. I was breaking. It was no longer worth it to keep beating this clearly dead and rotting horse. It appeared the horse corpse was my uterus, which was also hard to accept...especially since no one would out and out tell us 100% that that was the case (hindsight is amazing -- it seems so clear that my uterus was a problem when looking at all the data, but alas, that's not how it works when you're in the middle). Gestational carrier was brought up, but it's legally tricky in New York and we just didn't have the energy left for that sort of thing.

We officially ended our treatment journey, in January 2015 and completed the application for adoption in February. Our homestudy was completed in late June 2015 and our profile book was in our agency's hands in late July.

Embracing the unknown, and the waiting, even though it's hard. 

It has been an insane journey. We have stretched ourselves to the outer reaches of what we even considered possible when we promised that our hands would give each other strength on our wedding day, nearly seven years ago. We have experienced elated joy, and devastated sorrow. We have been hopeful and angry, sometimes all in the course of the same day.

We don't have an end yet. We have each other; we have our hope that through adoption, our dream of parenthood will be realized. It is a dream we have held on to through setback after setback. We have been knocked down so, so many times but we always get up -- despite being bruised and tired -- and we are determined to keep fighting this fight through different iterations. We didn't get to be pregnant, an experience I've always dreamed I'd have. It is a loss I have mourned, and grieved, and accepted. It makes me sad from time to time, especially as we had those 8 embryos without a home and when our year of storage was expired at Buffalo, we had to make a decision. Our decision was to donate them to/place them with Snowflakes, a program through Nightlight Christian Adoptions that finds homes for "excess" embryos created during IVF. We don't mesh ideologically 100%, but we have a common goal -- give our embryos, who we created with love and intention, the chance to Be. Give them a shot at what we couldn't give them. And so now we are attempting to find a couple who will take 8 embryos of mixed genetic origin that don't have a successful pregnancy in either cohort. It's bizarre. Someone else will (hopefully) be pregnant with the embryos that we created, and there will be tiny children out there who exist because we wanted a family so, so badly. It just won't be our family.

I don't know how our story will end. I was hoping not to be in the home study update process, but here we are staring down the barrel of one year of waiting. We've had three profile opportunities and had our book in front of two expectant mothers. One situation was a close call, but we weren't chosen. It's been a rollercoaster...but so hasn't the entirety of our journey.

Our story is a love story, a story of determination and perseverance through many iterations of our dream of building a family. It didn't take the turns we expected. It took some wild twists and turns, and we feel like we are going into a blind curve, with absolutely no idea what to expect. We could get matched with our baby and have the embryos formerly known as ours result in a pregnancy at the same time. We could be sending letters and pictures to our child's birth parents while we eagerly await our own letters and pictures. Our family tree is going to be a gnarled, grafted thing with roots and branches and perhaps some sort of symbiotic orchid growing on it. But it will be ours. Or, to be morbid, we could end up with a tiny family tree that's two beautiful trees twisted together, because "our" embryos ceased to be even with someone else and adoption didn't quite work out.

We don't know.

And that's okay. It's okay for your story to be ambiguous, even though it's frustrating. Sometimes things don't work out the "way they're supposed to." Sometimes you don't get the double line on the pee stick and and the family portrait that doesn't involve cats in onesies. And sometimes you do.

But for all of you who have an infertility story that didn't end in pregnancy, who went down a yellow brick road that turned into the dark and haunted forest full of evil flying monkeys and hasn't quite brought you to the Emerald City yet, it's okay. It sucks to experience pain and loss and uncertainty and then be faced with EVEN MORE uncertainty. We don't show up on inspirational mommy posts or blog compendium sites quite as often, but we exist. And it can be nice, even comforting, to see another story that's still unfinished even so many years later. It's real. It makes you feel like less of an anomaly. Sometimes you don't get the pregnancy. Sometimes adoption takes more time than originally expected, and stretching time between profile opportunities leave you feeling a little less hopeful than you'd like to be. Sometimes you spend your entire married life trying to build your family and living in a stagnated space, but you get to share that space with the best person possible. The one who pledged to hold you with his hands and hold your family as one. The one whose hands will hold yours when you're old and wrinkly and have the whole devastatingly beautiful journey to look back on. It won't last forever, this part of the journey. It just seems that way.

Someday, there will be a conclusion to this part of our life, and we will be able to live like normal people do. Maybe. It's possible, although we will probably be forever marked by the road we traveled. And that's okay.

Going into that gloriously blind curve...hand in hand.