Into the Unknown

It’s finally February, our transfer month, but the last several weeks have been anything but smooth.

In January I started experiencing severe abdominal pain, which is normal for me— except this time some of the circumstances were a little off. At times the pain was somewhat manageable, but overall, day after day was a struggle to function, working to hold everything together and trying to disrupt our family as little as possible. At night I laid in bed, curled up in a ball, trying to focus on anything other than the fact that it felt like something was tearing through my stomach. For most people it would make sense to be seen right away, but the cost of healthcare is too high for me to be seen every time my pain isn’t quite right, especially when so often it comes back to the usual culprits and no real treatment options. Instead I tried to wait it out and hoped the pain would go back to normal.

Finally, on day 10 with no relief in sight, it felt like I needed to make sure nothing else was happening. One of the most likely concerns was a twisting ovary, something I’d dealt with about 10 years ago and had been warned could happen again. If it needed to be removed by surgery, it seemed probable that I’d have a full hysterectomy rather than splitting it up into two procedures… but I didn’t feel ready. It would be a lot of added pressure for our upcoming transfer, and it would shutter the option for any future IVF cycles if needed.

Adding to the stress, a voicemail from the fertility clinic came in that afternoon. I listened to the message from our nurse in shock: they claimed my payment had never been received and were threatening to cancel our upcoming embryo transfer. And while I’d felt taken advantage of by the arbitrary fees they charged for having a gestational carrier, we’d paid it in full nearly a week prior. Of course, I wasn’t able to get ahold of our nurse or the front desk to figure out what was going on. Sheer panic shot through me at the thought of the possible repercussions for us, for our carrier and her family. I was terrified by what they would tell Becca, who had already started injections to prep her uterine lining, and texted her immediately, not wanting her to be confused or upset if they instructed her to stop medications on the basis of our lack of payment. Kyle was able to confirm that the charge went through on our credit card, but I realized then that the clinic had not sent me a single receipt or confirmation of payment as proof. I didn’t feel capable of dealing with it in the midst of the pain; all I felt capable of doing was crying.

I finally received a call back from the woman at the front desk a couple hours later, asking again for my payment details despite all my frantic messages that I had already paid. She was eventually able to locate my previous payment but offered no explanation for why I’d just been unnecessarily put through the emotional wringer. A quick email from my fertility nurse came through a while later to confirm we were back on, simply saying, “Never mind thanks,” (the lack of any punctuation making it worse somehow). I hung up the phone with the clinic a few minutes before walking in to see the doctor.

That evening I sat in the hospital waiting room with my mom and Ross, questioning whether two embryos would be enough if this latest issue led to unplanned surgery and feeling like I’d lost all control over my body, a feeling that is all too familiar. Ross, who was still traumatized by the flu shot he’d gotten for school a month prior, was most concerned that I might be receiving a shot of my own. He seemed skeptical when I reassured him that shots do not scare me, and I wondered what he’d think of the dozens and dozens of shots that Elle and I endured just to bring him into the world. 

The testing concluded no need for immediate surgery— it just drove home the fact that undergoing three IVF cycles in under four years has likely increased the growth and spread of my endometriosis far beyond what it had been before. Aside from taking everything out, which will eventually be my reality, there isn’t much I can do. The pain continued for a while longer and then very slowly began to decrease by the day. Ultimately, I lost more than two weeks of my life to it this time.

With everything else going on, the transfer has ended up feeling like one more out-of-control situation in an already out-of-control time. We did receive news that it will not happen on the day we originally planned; it will be delayed. While that happens sometimes, it was disappointing and difficult to bear. This new date doesn’t quite feel like ours yet, maybe because we’ve held onto the first one for so long. Work schedules had already been maneuvered around, and things like travel and childcare had already been sorted. There are seven of us between the two families who are directly affected in this crazy arrangement, and that makes everything so much more complicated.

To further complicate things, as we reached February, I suddenly realized we need to start talking to Ross about what is happening. In 2018 as I was injecting myself with an obscene amount of hormones, I mostly talked about it in a retrospective way– as in, this is what we did to have you. He was two years old then and didn’t put together what this treatment was meant to lead to, nor did I want him to think about it. In 2019 at age three, I talked to him about the process in terms I thought he might understand– as in, there are eggs growing inside my belly and the doctor is going to look at them today. On the way to one appointment, I remember him asking me when my eggs were “hatching,” and it made me laugh to picture the image he had of tiny eggs (and baby chicks?) cracking open inside my belly, but that’s what made sense to him at the time.

Now– at four years old and while we prepare for an actual transfer– it feels different. If we were going through this privately, I might not say anything to him at all. I don’t want him to experience the grief that comes with a negative transfer and the ending of a dream. But we have opted to share everything, and that means that he could possibly overhear something in the coming weeks. I would hope no one would say the words brothersister, or baby to him– we almost never use these words, even to ourselves, because they are not a guarantee– but I don’t know.

For the most part, we talk about the frozen embryos as our snowflakes, something he is familiar with because we have told him that, before he was a baby, Elsa froze him into a snowflake until we were ready for him. We even have a picture that Kyle made for me in 2015 of Elsa with him as an embryo that he loves to look at, and she has become one of his heroes.

Ross knows that Elsa has helped us again by keeping our snowflakes on ice until we are ready for them… but now, like Elsa, we head into the unknown.

Reality

A few weeks ago we were getting ready for bed when the email we’d been waiting for came through; attached was the initial draft of the carrier contract from our lawyer. Immediately, I felt my chest tighten. I didn’t want to deal with it, I didn’t want to even think about it right before trying to sleep. I can’t stress enough how much I hate the legal part of the surrogacy process. If I had the option of going through another IVF cycle instead, I would take it every time.

The first draft of our contract is forty-two pages long– forty-two pages of harsh language and serious threats, of stripping away the humanity of surrogacy and making it feel like a transaction, of mental images of stillbirth that have haunted my dreams in the nights since. A thick printed copy floated through our house over the next several days– Kyle would read a few pages and leave it on his nightstand for later; I would pick it up and get through a bit before abandoning it on the table downstairs. We circled errors, crossed things out, and made notes in the margins. It was mentally exhausting and emotionally taxing, and again it hit me just how much we are trusting to another person.

Simply the act of reading through the entire contract proved to be a challenge. For a couple weeks now, Kyle has been out nearly every night for work, and Ross started school after almost a month of inexplicable poor sleep, night terrors, and bad dreams. We hardly had the time and barely had the energy to focus on legal, but eventually we compiled our notes, discussed the revisions, and sent back our changes to the lawyer, working on it until nearly midnight one night just to get it out of our hands.

That was almost two weeks ago. The changes should have been fairly straightforward, but we didn’t receive so much as an acknowledgment from our lawyer. In fact, the only thing we’ve heard back was his opinion that Becca’s representation was charging way too much for a contract review– a lawyer she’d only contacted because it was someone he’d recommended in the first place. The last thing he said was that he could find us representation for less… and then he stopped responding. I finally asked Kyle to call him last Wednesday to follow up, and it turns out he’d left the office until the next Monday with no answers, no warning, and no progress on our contract.

In the meantime, I’ve been struggling to find a decent surrogacy escrow company to handle the medical bill payments during a potential pregnancy. The first two places I dealt with fell through for various reasons; yesterday I finally spoke with the onboarding specialist of a third. During our first journey five years ago, our agency handled everything in house: the financial, the legal, the travel, Elle’s psych support, and all coordination. This is common, though not exactly recommended, and we didn’t know enough then to insist on keeping everything separate. Now I am in charge of all the moving pieces, building our team from scratch while being out of state with almost no recommendations or industry experience to rely on. It’s not necessarily an impossible task, but it has taken over my life.

All year I look forward to this time: pumpkin carving and apple picking and putting together a halloween costume. The fall has always been my favorite season, and all the familiar signs are around me… but this year they seem duller, more hollow somehow. Instead, it feels as if a heavy fog has moved in and settled over us, so thick it’s hard to breathe at times. The stress and frustration, the anxiety and lack of sleep have all contributed to a higher level of physical pain as I’ve tried to hold everything together without much downtime or breaks. My coping skills are shot, and there have been times recently when I have calmed and comforted Ross through a tantrum, feeling as though I am trying to reassure the both of us. It’s okay. It’s okay. I’m here, and you are okay.

At the heart of it all is the sickening awareness that the only reason we are dealing with this is because of me. I have somehow failed so spectacularly that no amount of medical treatment will give me the ability to carry my baby, and no matter how much I try, I still don’t know how to accept this reality. I just keep coming back to it over and over again. If you think it’s tiring to read about repeatedly, imagine how many millions of times it has bounced around in my head. There are even times, these brief moments, when I forget that it’s truly forever and catch myself hoping that there will be another chance beyond this enormous loss, that I only have to keep fighting through this moment in time. And then it hits me all over again: it’s over.

It’s really over.

Even still, it can shock me to look around and see where we are. Not just for now but for good. Sometimes I’ll come across a picture of my younger self and think, How did this happen? And when?

After another night of sleep interrupted by screaming from Ross’ bedroom, we woke up one day last week to find that he’d developed his first sickness of the season. Cuddled up on the couch that morning, Toy Story played on the television like it has countless times before. I knew this movie by heart long before Ross was born, Buzz and Woody were a part of my own childhood, and it has become even more special to me now that Ross has fallen in love with it on his own. But as an adult, watching Buzz realize that he’s not a real space ranger is gut-wrenching in a way I couldn’t grasp as a child. I’ve always felt emotional over the scene, but in that moment, I saw myself reflected back more clearly than ever before. And I couldn’t keep the tears from streaming down my face and into Ross’ hair beside me.

All the things I thought I’d be,
All the brave things I’d done
Vanished like a snowflake
With the rising of the sun
Never more to sail my ship,
Where no man has gone before

And I will go sailing no more

The TK Emotional Stages of Rewatching the Original 'Toy Story'
You are a toy, you can’t fly!

The moment in my childhood where I sat in a specialist’s office in Boston and heard for the first time that I may never be able to have children is carved into my soul; it changed everything. I was determined to do whatever was necessary, no matter how torturous, just to be able to carry a child. But as Kyle and I came to find out many years later, it wasn’t enough. I had failed, fallen short, missed the window entirely. There would be no, let’s try again.

This December will mark 20 years of learning to live with pain that will never go away. Everyone seems to think that this time around there is no longer loss for me in surrogacy, but so often I still feel like Buzz, laying on the floor in disbelief and trying to come to terms with reality.

Clearly, I will go sailing no more

The Last Steps

We started the summer by facing our biggest obstacle since matching: the mock cycle. It was the test that would determine final medical clearance, and everything hinged on it. If Becca’s uterine lining didn’t thicken with the help of medication, there could be no embryo transfer down the road, and we’d need to find another carrier. Throughout the prescreening this past year, we’ve known that even the slightest issue could bring everything crashing down, but I was never more afraid than when we began the mock cycle.

A few weeks beforehand, Becca received instructions from our fertility nurse, and on June 26th, she took her first dose of estrace. Thirteen days later, after some blood work and an ultrasound, she began injections. Another ultrasound and an endometrial biopsy– for a brand new procedure– were scheduled for the following week. The Endometrial Receptivity Array (ERA) was so new that our doctor had still only done about a dozen of them when we first spoke of it in January. This advance in treatment analyzes genes from a small sample of the lining to help pinpoint the best window for implantation. Prior to this, everyone generally received the same amount of exposure to progesterone leading up to an embryo transfer… the problem is that as many as 30% of women need either more or less exposure to be fully receptive, and the wrong amount can result in failed transfers and, subsequently, the loss of precious embryos.

Since most women are fine with the normal protocol, and the research is still in its infancy, the choice on whether or not to proceed was ours. But due to the higher cost of surrogacy and the struggle for me to create embryos, our doctor did recommend it. The expense ($600 for the biopsy and $595 for analysis) would be significantly lower than doing multiple transfers or further IVF cycles for new embryos, and if we chose not to do it and our first transfer failed, I knew we’d always wonder, so we felt it was worth doing now. We wanted to give ourselves the best possible chance of success from the beginning.

On July 15th, Becca stopped all medications and a biopsy was taken of her lining to be sent to an outside lab. We’d need to wait a while for those results, but the mock cycle had ended, and I expected to hear from the clinic right away to confirm (or deny) medical clearance. And yet… nothing. It wasn’t until a full week later that we got the call from our coordinator with approval to move on to legal. For something that took so much time and effort, it was said so simply, without gravity or ceremony: we had full medical clearance. 

Getting the biopsy results from the lab took longer. After the second week, on July 30th, our fertility nurse called with the news that Becca actually is one of the women who fall into the 30%, and her body needs a little longer to be receptive to an embryo. Immediately my stomach dropped at the thought that we could have moved forward without that information– and what that could have meant for us. We may have saved ourselves a lot of heartbreak, time, and money, but I’ve often thought of the women who went before us and didn’t have this option… what would be different for them?

With medical behind us, we turned our focus to the very last step: the carrier contract. All of the surrogacy process is difficult as none of it is truly in our hands, but legal is one of the worst parts for me. If ever there is a reminder that this path to parenthood is not normal, this would be it. In 2014, it took us six weeks to draft and sign a contract that spanned more than 40 pages and involved multiple lawyers. While this time around should be slightly less complicated, we will still each have separate representation to avoid conflict of interest, and every possible outcome will be addressed. From stillbirth or life-threatening health issues to our carrier fighting us for parentage, we will have to imagine and plan for each of our worst-case scenarios. Our contract will likely also state that our carrier cannot terminate the pregnancy, but we will sign the papers knowing that that is truly unenforceable– it’s just part of the reality of surrogacy. Even though we trust her completely, these weeks are a cruel and painful exercise in dwelling on our nightmares. 

Every day I wait to hear from the lawyer with a draft of the contract for us to review. If all goes as planned we could be signing the final copy within a few weeks, and once that’s complete, our lawyer will petition the clinic for full legal clearance as well. And then we’ll be done… sort of. Actually, it is only then that we’ll really be able to start.

It was last October that Becca offered to carry a child for us, but it has taken almost an entire year to even start thinking about thawing our embryo for transfer. For a year her life has been appointments and testing and injections; for a year she has planned her life around this process. For us, the wait has been even longer. Four years ago, in November 2015, a few months before Ross was even born, we started planning and preparing for a second surrogacy journey. Two years ago, around late Summer 2017, we were able to take our first active steps in the process, and for nearly every day since then we’ve worked and waited. The grief, stress, and fear of the surrogacy process have become the background noise of our lives over these years, a constant IV-drip of pain. We have put so much time and energy into getting here, but the possibility of walking away empty-handed is still very real.

“In another moment down went Alice after it, never once considering how in the world she was to get out again.” 

-Lewis Carroll, Alice’s Adventures in Wonderland

Not long ago it seemed as though we might never get to this point, but now that our time is coming, I’m terrified. At least during these years we were “safe” in this period of limbo; once we have that transfer day, we will open ourselves up to new risks and the likelihood of more heartache. I know it’s the only way, and I know it’s what we have to do for the chance of something good, but we are scarred and traumatized from loss, and I don’t want to go through more. When I think of our future and what might happen this fall, I don’t feel excited– I just feel sick with dread.

For anyone who is familiar with the Bachelor franchise, Holly & Blake (who met on Bachelor Pad several years ago) recently shared a video on their journey with infertility and surrogacy, and I think it shows so well what it’s like to keep opening yourself up to this process:

Where Have We Been?

Since receiving and sharing the results from our second full IVF cycle in May, a lot has changed. Life was busy at the time and, despite my best intentions, I stopped posting altogether. The week following my egg retrieval, with a belly still swollen from treatment and a roller coaster of emotions made worse by unnatural levels of hormones, we celebrated Kyle’s graduation. It was a culmination of the previous three years of our lives, and as his name was called, I couldn’t help but think back to everything he’d been through in that time. After weighing multiple job offers in varying states, Kyle accepted a position, and a month later we put an offer on a house just 15 minutes away before beginning the enormous task of moving for the fifth time in less than nine years.

It was difficult to close that chapter of our lives, and I wasn’t ready to leave the apartment where our dream of becoming parents had finally come true. That was where Ross had taken his first steps, the only place he had ever known as home. All of his friends lived there– right outside his door and always ready to meet on the playground. It was also the last place our dog, Orion, had known as home, the last place he spent the night curled up beside me. I didn’t want to put distance between us and those parts of our lives.

These three years haven’t been easy by any means– the sacrifices we made, especially financially, of leaving behind an established life and starting over so Kyle could pursue his graduate degree, will affect us for a long time to come. The final months of 2015 following the move were terrifying, and for a while I believed we’d made the biggest mistake of our lives. Some of that time was devastating: the sudden and unexpected loss of Kyle’s mom followed by the loss of three of our aunts & uncles to cancer (all of whom were between their early 40’s to mid-60’s and still had so much life yet to live), the painful reality of the third trimester as I faced not being the one to deliver our child, the decision of putting our beloved dog down just two weeks after Ross was born, and the never-ending challenges of navigating a chronic illness that seeps into every aspect of our lives. But, we also gained so much in that time: we developed friendships that are more like family after these years of living in student housing together, we learned to live on so much less than I ever thought possible (and I think we’re better for it), and we finally, finally got to bring our baby home. Together, the three of us built a life filled with fun adventures and amazing experiences.

Now, here we are again, starting a new chapter.

As always, one thing has remained the same: the struggle to have a child. Nineteen years after diagnosis, it feels as though fertility (or rather, the lack there of) is still the thread of my entire life. In more than seven years we haven’t taken a break from actively working toward having a baby– not even when Ross was born. We’ve spent so many years just trying to put together the ‘picture’ of our family despite missing so many necessary puzzle pieces.

The injections and ultrasounds came to a halt following my egg retrieval nearly 6 months ago, but in the meantime, the surrogacy process trudges on. We knew this would be roughly a two-year journey, but the strength and determination I once felt is waning due to complications with beginning my third IVF cycle. The fertility treatment aspect, which is one of the more straightforward and uncomplicated parts of the process, has been a greater hassle than we anticipated, taking up valuable time and energy that could be used to focus on something else.

When we went through IVF for Ross, we were given a 3-year window to focus on treatment for another child. It wasn’t a guarantee that it would even be possible, but the recommendation was not to wait. We anticipated going through another cycle in early 2016, but surrogacy complicates everything, and I didn’t start injections again until two years later after postponing twice more (Summer 2017, January 2018). At the end of my cycle last May, we looked forward to another attempt in August. But again, we were unable to proceed with IVF as planned. It was a hard to accept, but October didn’t seem too far away…

I should be in the middle of my injections right now, but I’m not. It’s a story for another time, but we were forced to postpone treatment again, meaning that over the last two and a half years, we’ve missed out on completing IVF cycles a total of five times due to circumstances beyond our control.

The new hope is for January 2019, but I am feeling wary of hope, especially since that will be the same month that marks the end of the original 3-year window.

In the meantime, I don’t know what else to do other than to keep trudging.

IVF Cycle #2: The Time is Now

Sunday morning’s appointment was tiring but went well. I watched the screen with bated breath as Dr. K checked my follicles and took a few measurements, but it only took a minute for him to announce that I should be able to begin my stims (i.e. ovarian stimulation injections) that night. The only issue he had was some concern over the state of my left ovary (aka the “problem child”).  In 2010 when I was 22, it had started to twist, cutting off blood supply and causing significant pain. It’s been eight years, but there was always the possibility that this could happen again, and it seems as though it is now being affected by the scar tissue and endometriosis in that area.

At this point the doctor believes we should proceed with treatment and see what we can get, but when my ovaries inevitably swell later on in my stim cycle, I will be at a greater risk of it twisting. Throughout treatment and the weeks following my egg retrieval, I will need to be mindful of my physical activity and unable to lift Ross. In the last few years I had come to the decision that I was not going to have surgery again (aside from retrievals) unless I am having my hysterectomy. They simply take too high of a toll on me, with too little to gain, to continue at this point. Should something need to be done regarding the ovary, I believe it would be time to remove everything. I have always known that my time to pursue treatment is growing short, which is why we are pushing so hard to do this even when the rest of our lives are unstable. I don’t want to look back and have regrets or watch my last chance go by while I’m waiting for the “right time.” The time is now. I don’t have emotional energy to spare to dwell on “what ifs” so, in the meantime, we are simply relieved to be moving forward.

Sunday ended up being a very long day. We drove home from the appointment and had time for a quick lunch before spending the afternoon downtown at the local arts festival. Once we got home I quickly changed and left for dinner and a baby shower with friends, not coming back home until 11pm. I was exhausted and overwhelmed by the task of relearning how to mix my medication, but together, Kyle and I fumbled through the instructions for a bit before muscle memory seemed to take over for both of us.

I put together a chart to compare my cycles and noticed that my starting dosages are much higher than they were in 2015. The dosages for my first three days of stims are the same as they were for days 7-9, though I know my actual protocol is different (down regulation vs antagonist) and my ovaries took a while to get moving last time. Tomorrow morning I’ll go back for my first monitoring appointment, and I’m interested to see the difference it makes.

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Everything I need for one night of injections.

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Ready to go!

When we started the surrogacy process in 2014, I bought a small Paddington Bear while we were in England to carry with me to all the upcoming appointments. It was my hope that someday I would be able to pass it along to a child, and when Ross was born, Paddington became his. It also became a symbol of hope for us, and we have bought and been given many Paddington-themed items over the last few years; we even used him as inspiration when decorating his nursery.

I’ve always known that when it came to the second surrogacy journey, I wanted to have something to carry with me again. I considered getting another Paddington but ultimately felt like that was something special to Ross. It took a while for me to find something that felt right, but several months ago Ross helped me pick out a little polar bear to represent the frozen embryos we are hoping for. This polar bear has stayed on my nightstand ever since (in the same spot Paddington used to sit before he moved to Ross’ bookshelf), and he’s been keeping me company at my appointments:

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When I last began IVF treatment, I wasn’t aware of anyone in my life who had been through it. To make things worse, surrogacy was a foreign concept to virtually everyone we knew, and there was a lot to explain. I felt overwhelmed and isolated by our reality. Now, more than three years later, I know dozens of women who have been through the IVF process– there are even several toddlers on my Facebook feed that I’ve followed since their transfer days as microscopic embryos. In many ways, it feels so very different this time around.

Going into this part of treatment has felt a lot like preparing for a battle. We’ve talked about this cycle and how we’ve wanted to approach it for more than 2 years now, and so much has had to come together for us to get this far. It has been difficult and painful, just like before, but I feel incredibly grateful for the opportunity just to try again. There was a time when I did not know if this chance would ever come, and I am ready to reach out and grab it.

IVF Cycle #2: Ready

As of this morning, I am 16 days in to my current IVF cycle with the same number of Lupron injections behind me. What was only supposed to be 7-10 days of injections stretched into double the time frame and was accompanied by several days of moderate to severe abdominal pain. The pain itself wasn’t necessarily unusual for me but the circumstances around it were, and after a while I started to worry that something more was going on with my body. Even a simple cyst would have the power to cancel my IVF cycle completely and render everything up to this point useless. But we were stuck– there was nothing we could do to move on until I reached the first day of my new cycle, and the wait seemed like it was never going to end.

On Friday I finally hit Cycle Day 1, which means tomorrow morning we will head to our clinic for my baseline appointment. If everything checks out with my ultrasound and blood work, I’ll get a call in the afternoon with instructions on beginning my stim injections tomorrow night. My ovaries will go from quiet and sleepy to slammed into overdrive.

Aside from the bad reaction to my first Lupron injection, the rest have been easy. Every morning I load up a syringe and stick myself in the belly without even needing to think twice about it. The medication itself, however, has been a bit more difficult to tolerate: I’d been on it once before when I was 16 and only remembered that it made me so emotional I couldn’t get through the school day without crying in the bathroom. Back then it was meant as a treatment for my endometriosis, but within a few months I was taken back off of it because I was struggling to function. This time around I feel a little more in control, but there have been many times where I’ve found myself crying before I even really know why. The nausea, motion sickness, and hot flashes aren’t so fun either; my body just doesn’t seem to like this medication. Unfortunately, I’ll need to continue these injections throughout the rest of my cycle, though I will get to cut the dose in half.

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It’s hard to know how much Ross understands about what’s happening around him. He watches me do my injections in the mornings, and I’ve tried my best to explain to him that although my medication makes me cry sometimes, I am okay. He has accepted this and doesn’t seem too affected by it, but the other day he randomly looked up at me and said, “Mommy’s medicine is not nice.” He knows when I am going to the doctor and I’ve mentioned that the doctor is checking the eggs in my belly to see if they are growing, but that’s as far as we go. Truthfully, not even Kyle and I dare say out loud what we are hoping for at the end of this, and I am afraid of putting ideas in Ross’ head of something that may never come to be. For now it seems best to keep things simple.

Someday

Bridge ending[4]-2

Almost three months ago we marked my 30th birthday. My aversion to the day is nothing new; it’s been several years now since we’ve celebrated. The fact that it happens to be the anniversary of our first early loss from 2012 has changed the way I feel about it, but it’s also painful in that it represents valuable time slipping away. Somehow being dragged into this new decade made August feel even worse than usual.

My age shouldn’t even be an issue yet. I’ve always been on the younger side of infertility patients and we should have years for possible treatments stretching out ahead of us. During our first appointment in the surrogacy process, our doctor even mentioned how young we were to be in this position, pointing out that at just 26 I had some time yet before I reached his cutoff of 52 years of age for an intended parent. In the surrogacy world it’s also common for an intended mother to be older than her gestational carrier, but I am seven years younger than Elle. And while our current circumstances have prevented us from starting the process over for another child, at the very least we should have the time to wait. Except that we don’t. From the beginning, our timeline has always been stuck on fast-forward, and for me, reaching 30 has always represented the beginning of the end.

For almost 20 years, the plan has been to have my final surgery in my early 30’s– as in the surgery, a hysterectomy. The goal over nearly two decades of my life was always to maintain my fertility until I was able to have the family I wanted. After that, my doctors assured me, one last surgery would give me a much more normal life: I’d be pain-free again, my days would no longer revolve around a monthly cycle, and the pressure to do everything possible to save my fertility would be gone. It would all be over, and at last I’d be free.

Living with pain is physically and emotionally wearing, but it has never been my greatest fear. I remember desperately trying to bargain with God at 15 or 16, offering to accept any physical pain if only my ability to have children could be spared. It was a price I was willing to pay, and over the years I clung to this image: being 30-something with three kids and a body that no longer hurt. That was the only thing that kept me going through the very worst of days. In those moments, when all I wanted was to be rid of the pain for good, I’d remind myself that it was worth it to be able to have children someday. I truly believed that there was a purpose to my pain.

Over the years we’ve made a lot of decisions around this deadline for surgery, including meeting with two different doctors Spring and Summer of 2011 to discuss plans for what was likely to be a complicated pregnancy. It has been since that time that we have remained focused on having a family, and as I’ve reached this new decade more than 6 years later, I’ve found that I don’t know how to accept our bitter reality. I am hurtling towards a hysterectomy, but my life would have been infinitely better if I’d simply had my uterus removed from the start– as it turns out, I’ve only ever needed my ovaries to have Ross.

Becoming a mom was always the priority, but doing so through surrogacy didn’t suddenly dissolve the feelings of loss I have over never being pregnant. I wanted to have the experience that is able to unite women in a common bond across every race, culture, and generation; I wanted to have the ability to make my own choices in regards to family planning; and I wanted to have all the little things that came with being able to carry a child: telling my husband he was going to be a father because I was carrying his child, feeling my baby kick from inside me, and going through delivery knowing that my body had done this amazing thing despite its brokenness. I wasn’t so naive as to think that we would never struggle; I knew that as time went on and my disease continued to progress, it was likely we’d need intervention along the way as we became a family of five. But I never imagined that by 24-years-old my window of opportunity was already shut, and that the experience of a full-term pregnancy– even just once– was forever out of reach.

It seems people expect me to have accepted infertility by now, especially after a successful surrogacy journey, and there is a lot I have accepted. I am at peace with Ross’ story and I am grateful to have Elle and her family in our lives. Truthfully, it’s not the infertility that I find so unbearable to accept, it’s the permanence of our situation. This is not a phase for us, it feels like an ending. All along we’ve been fighting a war– and I’ve been fighting long before Kyle ever came into my life. We lost many battles together, more than I have shared in the three years I’ve been writing here. And then the tides turned and we came out victorious one day. Nothing can take away the joy we’ve experienced, but that hasn’t changed the fact that we are still stuck in this war that has consumed our lives. It’s tiring and painful and worst of all, I know how this goes; we’ve been here before.

I honestly don’t know how to accept that we may never have another child because surrogacy is by far the most expensive, most intense kind of intervention you can possibly need– or that 18 years of living my life in chronic pain have been for absolutely nothing. The final blow is that, because of complications, living pain-free again someday is now no longer an option, no matter what organs I have removed. Accepting this reality feels like I’d be saying that everything I’ve suffered is okay, but it’s not. I’m angry and heartbroken, and I want my life back.

This isn’t how the story was supposed to end.

Do you ever feel like you’re living the wrong life? There are moments when I think about how over the last few years I’ve become the poster child for surrogacy among family and friends and I just want to say, That’s not me! That was someone else! Somewhere out there we are living a different life: Ross is a second child and we’re getting ready to have a third when Kyle finishes his degree in May. Our first-born child, the one that we were meant to have, is turning 5-years-old. And while my upcoming hysterectomy still won’t fix everything, it will at least bring relief from some of the pain, and I will be at peace knowing that I did not spend my life suffering in vain.

But that’s not a life I will ever know.

Half Agony, Half Hope

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I’ve wanted to write about our upcoming plans for a while, but for quite a few days now I’ve been struggling through truly debilitating chronic pain. It hasn’t been easy to pull my thoughts together enough to write something while my mind is so unclear, and being bedridden by pain only makes the time slow down even further while we wait. It feels as though the stress and anxiety of our current situation is attacking and destroying me piece by piece, but I don’t know how to change it.

In the meantime, we’ve decided to move forward with a frozen embryo transfer (FET) as soon as possible since we are quickly running out of time prior to our move. (For those of you who haven’t heard yet, we will be relocating to Princeton, NJ for Kyle to attend grad school in the Fall. It’s fantastic timing, we know.) It’s also important to us that we are respectful of Elle’s time as her life has been on hold for us these last several months. All of this means pushing through to this transfer now, no matter how tired we are or how much we are still grieving. At the very least, it gives us some focus.

During the last few days of March we contacted our fertility nurse and started making plans for the earliest available date. Scheduling our FET was much easier than using a “fresh” embryo (meaning that it was transferred to our gestational carrier five days after my retrieval, having never been frozen). This time we were free to begin planning for the transfer based solely on Elle’s body and not mine. She came off her current injections (meant to help sustain a pregnancy) right away following the negative blood test and will start new injections (to prepare her uterus) later this week following a baseline ultrasound. We expect to have plane tickets and hotel accommodations ready for Elle and her husband within about a week.

After our medicated IVF cycle in February, we had hoped to end up with a small reserve of possible embryos to use because their success (and survival) is not guaranteed. Having back-up options would mean that I wouldn’t have to put my body through another egg retrieval right away if we were unsuccessful. But, you may recall that something went wrong just before the transfer and only two survived. Our fertility doctor is still baffled as to why this happened and even called to say he had been researching possible issues and alternative options, but I believe that this is yet another consequence of my endometriosis.

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Our remaining embryo, on which all our hopes are resting, had to be frozen for future use. Unfortunately, since they don’t always survive the thaw, we won’t know whether we can use it for a transfer until that morning. We will still have to prepare for it, continue building our hopes up for it, and travel to the clinic for it– even though we could end up with nothing. Elle will still have to be on weeks of injections and will fly here with her husband for a few days– even though we could end up with nothing.

Showing up for a transfer without knowing whether there is an embryo to use would be a difficult situation for anyone going through IVF, but since we need the help of a third-party, the risk is even greater. Desperate for any other option, I asked our fertility nurse how we should handle the fact that we could be flying in our gestational carrier for a transfer that will not happen, but the only advice she could give me was, “Don’t think about it.

Easier said than done.

Endometriosis Awareness Month

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March is Endometriosis Awareness Month.

When I decided to share our experiences with infertility and gestational surrogacy through a blog, it was met with mixed reviews. Some people thought it was a crazy idea, some people thought it was stupid, and some thought it was both. I know for a fact that my 12-year-old self would have agreed with all of them; she would have been horrified to know that I was willing to talk about these personal and intimate issues in such a public way.

Being diagnosed with a reproductive disease at twelve years old was nothing short of awful. All of a sudden my life revolved around severe chronic pain and I began to worry about the future of my fertility when I was little more than a child myself. In addition, I was exposed to the many limitations and inadequacies of our medical system. And worst of all, it was difficult to find people who believed my pain was real.

But at the time, one of the things that bothered me the most about my diagnosis was that I found it horribly embarrassing. In fact, I forbade my parents from telling anyone outside the family the reason for my illness. I didn’t want others talking about or even thinking about my reproductive system when I was too uncomfortable to deal with it myself. Getting invasive questions from the dozens of doctors (and nurses, med students, etc.) about my last period and whether I was sexually active (again, at 12) was bad enough. I didn’t want my future fertility to be an open discussion among people I would have to see on a daily basis.

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This was me about a year after being diagnosed with endometriosis. They don’t call it an ‘invisible illness’ for nothing… but just because you can’t see it, doesn’t mean it doesn’t exist.

Covering it up wasn’t easy though. People wanted to know what was wrong with a previously-healthy girl who was now in the hospital several times that month. My school wanted to know why I was continually absent. As a compromise, my mom and I settled on telling everyone that I needed to have my appendix out. It was the story I told all of my friends and the story my mom gave each of my teachers. It was the version my dad told our church congregation that Sunday morning. I was comfortable with that; after all, Madeline had had her appendix removed and wasn’t embarrassed by it in the least.

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It would have held up pretty well, too, if my appendix hadn’t ruptured unexpectedly the following year. Since then I’ve had several more surgeries to remove scar tissue, lost my gall bladder and the function of my fallopian tubes, and I’ve come close to losing an ovary due to my scar tissue weighing down one side and causing it to twist. I still live with debilitating pain that dictates my life and it can become so severe that I pass out or throw up. And, following a particularly extensive surgery, I developed fibromyaliga at 17, which has since caused me significant chronic pain and fatigue every moment of the day. Those are just the physical repercussions I’ve faced. The emotional and financial repercussions are far less easy to list. All of it can be traced back to the original endometriosis.

This is probably one of the best illustrations of how it feels that I've ever seen.
This is probably one of the best illustrations that I’ve ever seen of how endometriosis actually feels.

Fifteen years after my diagnosis and here I am battling far more than just endometriosis. It has taken so much from me, and now I can include my fertility on that list. I’ve lost years of my life to this disease. I’ve lost healthy organs to this disease. I’ve lost the ability to carry a child of my own. I may have even lost the ability to have a child in any capacity.

For some, endometriosis is little more than a listing on their medical chart, but it is different for everyone. The earlier it’s diagnosed and the sooner you find a capable doctor, the better chance you have of maintaining your fertility. The more people understand about this disease, the easier it is for those who are suffering from it. That is why raising awareness is so important. I’ve written about this issue on Facebook in the past to help educate others, but over the last several years as my worst fears have been confirmed, it was too painful to write about while still hiding our struggle. Now that I am able to speak openly about our infertility, it is important to me to once again take part in Endometriosis Awareness Month (even if it is the very last day). Please help me in spreading awareness; your fertility or the fertility of someone you love may depend on it.

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A few facts about Endometriosis:

  • You can only receive a diagnosis following surgery. Endometriosis cannot be detected through other, less invasive medical screening.
  • Many doctors and medical professionals are ill-informed or even uneducated regarding endometriosis, which is why misdiagnosis is so common.
  • There are four stages of endometriosis, but the level of scar tissue is not directly correlated with the amount of pain it causes.
  • You do not have to be a certain age to be diagnosed with endometriosis. I was diagnosed at 12 after several months of pursuing a doctor who believed me and could help. He was a top specialist in adolescent endometriosis and my diagnostic surgery took place within six month of my first cycle.
  • Endometriosis is the leading cause of infertility in women. It’s estimated that up to 50% of women with the disease have experienced infertility.
  • There is no cure. There are only treatments that may help preserve fertility and manage symptoms.

If you have questions about endometriosis, feel free to ask me or keep digging for yourself. Here are a few sites that may be helpful:

http://endowarriorssupport.com/

http://endometriosis.org/

http://www.endofound.org/

Part 1: What You Shouldn’t Say

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I don’t want to hear this!

Infertility is something that you can’t really understand unless you’ve lived through it… but that doesn’t stop most people from offering up their opinions and advice for your personal circumstances. Dealing with this painful experience is difficult enough, but the constant barrage of insensitive (or sometimes cruel) comments from family, friends, and even near strangers results in the instinct to hide your infertility altogether.

If a loved one chooses to share their struggle with you, it’s more important to avoid saying the wrong thing than to find the exact right thing to say. I’ve included some examples of what not to say along with some lighthearted “someecards” I came across on Pinterest. Chances are, if you’ve been through infertility too, you’ve heard a version of all or most of these.

“But, trying to get pregnant is the fun part!”
Yeah, maybe if you only ever had to try for 3 months. I get the “joke” being made here, but dealing with repeated disappointment, grief, and failure month after month for years on end just isn’t funny. In addition, when “trying” includes endless appointments, invasive treatments, and awful drugs, there is really nothing fun about it. Please remember this: trying is never the fun part for someone with infertility. 13e2f9ffde2d6e702e7ab1bc66be829d “Can’t you just get another dog?”
Would you notice if I replaced your children with dogs? 4c49e7901a450e8883827713101b6469 “Why can’t you just adopt?”
This is one of the most frustrating questions we get– and we get it all the time. Many people who suggest this seem to believe that adopting a child is as easy as picking up a rescue dog. Sometimes they will even criticize you for choosing to undergo fertility treatments when so many children are in need of loving homes (somehow overlooking the fact that their own children were not adopted). But, unfortunately for us, the adoption process is not easy. It is very expensive (in fact, IVF is generally the cheaper option) and the time commitment is enormous. 

The process of adopting has also changed in recent years. There are no longer as many children available to adopt for various reasons and the waiting lists are long. Many agencies and birth parents can afford to be choosy and loving families are turned away for reasons you might not expect. Some international countries have stopped allowing Americans to adopt their children or have limited the number adopted out of the country each year. In addition, birth parents are able to change their minds at the last minute or even take the children back within a certain amount of time. I would love to adopt, and we are still open to it in the future, but I am terrified by the whole process.

Honestly, I would skip out on suggesting adoption to your infertile friend. Trust me, s/he is probably better informed about the issue than you are, and it will not be the first (or second, or third) time it’s been suggested. Often when someone tells us that we should “just adopt,” it feels like a dismissive way to end the conversation about infertility without having to get emotionally involved.

9ba677a40d8b6261e218c120523d48e0 2743e182e13d99e1242f7fd0b99ac1de “IVF is a waste of money.”
We can respect that the cost of IVF (financially and otherwise) isn’t worthwhile for some. All we’re asking is for you respect that we feel differently. 02c05ca8c9cf86df6ee9d04598d797b7 “You’ll get pregnant right away as soon as you… stop trying/go on vacation/relax.”
Unfortunately, relaxing and going on vacation will not cure my infertility caused by a disease. If only it could be so easy! This advice is just not helpful for someone who could be dealing with a legitimate medical reason for why they cannot conceive. You wouldn’t tell someone fighting a disease that the cure is just to relax, so this should not be offered as advice for someone dealing with infertility. Not to mention, it also belittles the pain your loved one is experiencing.  f5f5526c39c52c05ad05e56430764f6d “You’re young, you have plenty of time.”
I’ve known since I was 12 years old that I will have a hysterectomy as soon as possible because of the significant pain I live with on a regular basis. The sooner we have children (or decide to stop trying), the sooner I can have it all taken out. We are working with a much smaller window of opportunity than most, which is why we started trying to get pregnant at 24 in the first place. You don’t always know what someone’s circumstances might be, so please don’t assume that you do!

“It’s God’s will.”
This is one of the most hurtful comments we’ve received. I think it’s important to be really careful as to what we label as “God’s will” in the lives of others. Throwing this phrase around has the potential to be damaging to a person who is struggling, and that’s just not necessary. fe499a658b604c3965dee5a963bd66b9 “Endometriosis doesn’t cause infertility. I know a lot of people who have it and they were still able to get pregnant.”
That’s great for that person, but her body is different from mine and so is her disease. I’m not sure why this is so difficult for people to grasp, but just like there are different stages and severities of cancer, there are different stages and severities of other diseases. Not everyone with a diagnosis is exactly like that one person you happen to know!  b7eb5f310f46825463e98ef835f42bce “Trust me, you don’t want kids. Just take mine.”
Unless you are totally serious, don’t offer this. 5cddcc80ff65383cf011b51e0561f46b “I know a couple that couldn’t get pregnant. Then they adopted and guess what… they got pregnant!” Does every person in the world happen to know the same couple? I mean, there can’t be that many people who have had this happen to them, right? We have heard this story (urban legend?) more times than you can imagine.

“You’re so lucky! You still get to sleep in/travel/be selfish/etc. Enjoy it!”
Going through infertility when all you want is the ability to have a child is not lucky. The very people who complain about their children and all the ways they interfere in their lives are generally the same ones who will go on and on about how children are the best part of life just five minutes later. So, none of us are really buying it when you say this kind of stuff.

Then there’s the statements people make along the lines of … “You’re not a mother, so you don’t understand,” or “Your life doesn’t really start until you have children.”
Sometimes people say things they don’t think through beforehand, I get that. But if you’re with a friend who’s suffering from infertility, please use a little good judgement and exercise some caution. 

747beec2ed07b985389c3687c89a0d78 Below are some of the more painful ones because they were more personal to what I was going through specifically:

[On confiding to someone that I believed I was having a miscarriage] “At least you know you can get pregnant!”
No. Just no. There are much better ways to comfort someone through this kind of pain.

“Maybe God made you infertile because He knew you wouldn’t be a good mother because of your health issues.”
There was no malice intended in this statement, but these words seared into my brain and I will never be able to forget them. Again, at the very least, please be careful what you attribute to God’s actions. But really, this should never be said to anyone. Ever. 

A Few Other Don’ts:

Don’t assume that they don’t want to talk about it. I’ve learned that very few people are comfortable talking about infertility, so consider being someone your loved one can talk to about their struggle. It’s possible that they just need someone to listen and care; don’t feel like you have to give advice!

Don’t forget about the spouse. People have often asked how I am doing throughout this process, but they almost never ask Kyle how he’s coping. I think this happens for a few reasons. For one, I have been much more open about our experience and my pain. In addition, the common view of infertility is that it only really affects the woman. Also, some may know that he will almost always say he’s “okay” anyway– whether or not it’s true. While that is likely, he will remember that you asked and it will mean a lot to him.

Don’t expect your loved one to always be “normal” while going through infertility and/or fertility treatments. These experiences are considered traumatic life crises, and people will cope with that in different ways. Just accept them for who they are and love them through it.

Don’t ignore his/her pain. One of the most hurtful things I’ve experienced during this process was when people acted as though I wasn’t hurting at all. Maybe it was easier for them that way, but it made me feel extremely isolated and eventually damaged my relationships with those individuals. If someone you love is dealing with infertility, please don’t turn your back on them or diminish their pain. This experience is hard enough without adding strained or lost relationships to the mix.

I know this may seem overwhelming, but I promise to write a “Part 2” about what you can do to support someone through infertility.

And if you’ve been through infertility, feel free to add some of the comments you’ve gotten from people. There were just so many, I couldn’t include them all!