They call it the “shooting stat” and it’s as miraculous as that - My Story for National Infertility Awareness Week
This week is considered National Infertility Awareness Week, but for those who are struggling with it, this one week is just a speck of time in their journey. And for those of us who have been through it, seeing all the posts opens up our own infertility wounds and causes the raw feelings to return from the places where we keep them carefully locked away.
I’ve always been a determined, hardworking and goal-oriented person. When I put my mind to something and work my hardest, for the most part I’ve been able to make my dreams and aspirations come true. Wanted to become a teacher...done. Wanted a to own a Jetta...done. Wanted to buy a house in my dream neighborhood in Worcester...done. Wanted to own a boxer...done. Wanted to go back to school to further my education...done. Wanted to have a family...COULD NOT GET IT DONE, and it broke me for a long time. I know for so many of you, it’s breaking you right now too.
The breaking started after my first miscarriage. It was unexpected and it was horrible. There was nothing that could be done other than to wait and to let things happen naturally. If you’re anything like me, waiting only makes things worse for you. Soon we had the green light to try again, and “things should be ok”. It was also at this point that I realized I was now part of a group that could only be understood fully by those who also had had a similar experience. (I’ll come back to talk more about this group in a minute). This was also when I realized how seemingly well-intentioned people can say things that crush your soul and make you want to punch them directly in the throat all at once. I’ll never forget my first of these comments; “Well, it’s better that it happened so early because you didn’t get too connected to the baby.” WTF would make someone who supposedly cares for me say that?!? How could they think that was ok to say? Of course, I was connected, I had been since the minute I found out. These comments continued through the entire journey and they NEVER helped. They always made the pain deeper and the despair stronger. The other day, I’m devastated to admit, I actually made one to someone. When I realized what I had done, I was so disappointed in myself and I spent almost an hour apologizing, but I knew the damage was irreversible and it stayed with me. For some reason when we try to help, we often try to make others feel like we understand them by equating what they are going through to something we’ve been through. It’s the right motivation, but it’s the worst way to help. Just listen. It’s what I should have done. Let them talk and be there to hear them. Don’t try to or feel like you need to or should respond. Listening allows them to speak things that they have probably not put into words for the ears of others and they just need to let the words out of their mouths, their brains, and their hearts, collectively.
Back to the new club that I had just become a part of. Having a miscarriage is a life-altering experience for a woman. It FOREVER changes you. It changes you if it’s your first or your third (my personal count). For each woman it’s different, but what connects us is the experience. They are painful and isolating and you feel like you did something wrong. There are usually no answers and you often are left to make even more painful choices about what to do next. Choices that I wouldn’t wish on my worst enemy. Choices, that in many states require your medical records to list that you had an elective abortion (I’ll save my rage for that for another article, but trust me, it’s HUGE!). But what this club does bring you, is the love and support of others from it who will reach out and be there for you to let you know that you are not alone. Social media has been so transformative for this and many other groups, and personally, I think it’s wonderful to see others sharing so we can all be part of something, instead of feeling isolated.
After multiple miscarriages came the next set of appointments. I felt like maybe this next step would bring some comfort and answers, but the Clomid Club, for me and for so many, did not. It’s the first foray into hormones and it’s hell. As someone who’s done IVF and dealt with all of its hormones, I can tell you that Clomid is the worst of them all. You’re already so emotional and dysregulated and along comes Clomid to say “Oh, you think you’re emotional already?! Hold my beer!”. No success here and more feelings of disappointment and despair.
Once we had finally satisfied the 6 months of failure with Clomid, we were approved to head to the next step. The consultation and testing phase. As a teacher, this phase felt the most logical for me. We were going to get some real data and use that to best inform our next set of steps. To me, this felt like what we should have been doing all along. I thought the data would help, and it did clinically, but what it was also about to do was to show exactly why, things weren’t working for us, and THAT information is hard to work through. You’re a team and a partnership and this is going to be raw and real and you’re going to need to come together or it can tear you apart. It’s important to remember that it doesn’t matter who. We are blessed that Science and medicine have come so far and that they can help in the ways that they can. I’ll repeat again, the who doesn’t matter, you’re in this together and you should keep your thoughts focused that way. Each of you will have your own set of tasks and they will be equally undesirable.
As I write this to recount the journey, I’m struck by how I’ve recounted so much and how we are only at the IUI Club after all this. Chronologically it had been 3 years by now, and still no baby. 3 YEARS! 1,095 days. Let that sink in for just a moment. Most insurance companies require IUI as part of the process, because, let’s be real, they don’t want to pay their share of the enormous cost of IVF and they know you’re desperate, so they make you endure these procedures which are the equivalent of a hail mary pass in the fourth quarter when your team is down by 6. I’m from New England, and even I know how that usually turns out. But you go. Each time, for the next 6 months you undergo 6:00 am ultrasounds and blood draws every two days, 3 phone calls a day to hear numbers and data and you stay legs up for an extra 10 minutes, because what else can you do? You’re trying to make some kind of difference in making your dreams happen. But they don’t work. For you, it was no Big Papi at the plate in the bottom of the ninth with the Sox down a run. Do these sports references seem ridiculous, sure, but it’s literally how the process feels, and right now, I’m missing sports something awful!!!
Then you make it to the Championship of Infertility...IVF. All of your training has brought you to this moment and shit is about to get REALLY REAL. You will have your meds ordered and they will come in a box so big, you’ll think there’s got to be more than meds in there, but nope. It’s all stuff for YOU to take. It’s vials and syringes and alcohol swabs and a sharps container. You’ll get a calendar that you will have to follow precisely. There is literally no wiggle room. You’ll be scheduling appointments and procedures like never before. For many, this part comes as a relief. It’s finally here and you’ve heard so much about how successful IVF can be, so you let some hope sneak back in. Hope is a word you’ve been reluctant to allow back into your life because it’s been such a journey, but maybe this time you can. This journey has tested your faith in ways you’ve never imagined, so why not try a little hope again? Then comes the most real information you’ll ever get in your life...you have 6 chances. 6, the number of championships the Bulls won in the nineties (and YES it’s at the same level). That’s all that insurance will cover, and we were blessed that ours even covered that. Many spend their life savings on this journey and even with insurance, the out of pocket expenses are quite large.
IVF is rigorous and all-consuming. You have ultrasounds and blood work again almost daily and you’re probably going to have to go before 6:00 am so you can get it done before work. If not, you’re going to be off a day and at this point, you’re not willing to wait one more day. The first cycle was going “perfectly” as I was told by my nurse. I was her “star patient” and I was following all my directions exactly. I had let hope back into my life and we were doing it right this time. I was injecting myself daily and I knew which side was easiest and that the bruises all along my middle were my battle scars. The one hiccup was my numbers. Clearly my ovaries were like me, overachievers, and they were working too hard, so they were going to give me one more med and this would all level out. But because my body is such a rule follower, the meds did what they were supposed to, and they bottomed out my numbers, killing ALL 18 viable eggs I had. And it was on my birthday that I found out. My birthday was the day I learned that Cycle 1 was done. We were now down to 5 and it would start again in 2 weeks after I took more meds to bring my levels back down.
Cycle 2 got underway, but this time I felt conflicted about bringing hope along with me. I knew I needed to stay positive and know that it would happen for me, but it was grueling to try to stay positive during all of this. It began much like Cycle 1...I was still the star, I was still doing great injecting myself and this time they knew how my body would respond so they could adjust the course for it. This time along with my 14 viable eggs, I made it to the egg retrieval. Up at 4:30 am to be there on time, following ALL the directions on that paper, including the ones about no makeup, perfume or deodorant. You bet your ass I wasn’t going to let that wreck this cycle. Soon I found myself standing in front of a video camera in a hospital gown reciting my numbers and name. I got into place, and let me tell you, there’s ZERO room for modesty up in there. Before I knew it, I was out cold. I woke up soon after, left and went home to recover and wait for the results. The call came in around 4:00 pm, as they usually do. They were able to get 21 eggs for fertilization. 21!!! OMG! This was amazing. I drank my red Gatorade as instructed and went to sleep for the rest of the day. The next day the call came in that we had 8 embryos. So there’s the Math for infertility...21 eggs were fertilized and that yielded 8. I remember saying “Ok. What’s next?!”. I was told they would report daily about the development and grades (another teacher comfort) of each and we were trying to have 1 make it to day 5. Hope was back! How could 8 not make it to Day 5? The next phone call said there were 5 and one “didn’t look great”. Jesus!! This was only day 2 and we only had 5. Damn you, hope! Next call was 4 and 3 were excellent grade. The next still 4. And the final one, you’re set for a Day 5 transfer. We had an XBAA, an XBBB and an XBBC. All great and they would try to implant the first. We know that my Joey and I laugh when I imagine him in there raising his hand saying “Take me!!! I want to go first!!”. The second was my second Nick and I know he was like “You go! I’m going to just chill here for a few years.” LOL! There’s still one frozen and we pay $80.00 a month because I fear deep in my motherhood soul that if I do anything else, we will somehow be punished.
Transfer Day was intense. I had a full bladder, and true to form I had followed the directions too well and actually had to be told to pee twice before because I had “followed the directions too well”. Back in the room for the third time and finally settled, we saw, what for IVF couples is the most amazing sight. They call it the “shooting stat” and it’s as miraculous as that. I watched the screen as Joey shot across it and, Hope was back. I was terrified to get up to pee, even though I was assured they knew it would NOT come out. Don’t judge, at this point, wouldn’t you be worried?!
Now we were at the 10 Day Wait. It is the longest 10 days of your life. They give you a well-meaning list of things to do during it, and if that works for you, great, but I tossed that shit right away. It was a rollercoaster, to say the least, and it felt like ALL of the days of the entire journey were lined up right in front of me. Day 10 happened on a workday and I remember going for the blood draw at 6:30 that morning. The office knew when the call came I had to take it, and lucky for me, my work family was ready to step in and take over. It came in at 1:03 pm during my Reading lesson. My friend Cheryl basically threw my phone at me and pushed me out the door of my classroom so I could take the call. Then I heard the words...”You’re pregnant.”. I was over the moon. But only for an instant. Would this baby make it? And the answer was YES! And so did the second one.
Infertility is a bitch and it’s going to wreak havoc on your life. But there are many of us out there who have already endured the journey and I promise you, we are here for you. From the moment you want to let those words leave your mouth, brain, and heart for the first time to your transfer and ALL the moments in between. We are here to listen. We are here. What you’re feeling is ok and normal and there is NOTHING wrong with it!! You are not a monster for how you are feeling. You are right to cry or not cry or yell or to do whatever works for you. Reach out to others in the Infertility Club, read posts, and feel all the feels. And if you can’t find someone, come find me, I’ll listen.
We recognize this struggle for a month but remember for many, it’s well beyond that and for some, it’s forever. Having the chance to be a part of something bigger and seeing that your normal is normal for so many others is powerful in a way that’s hard to describe. Orange up!