Killingmesoftly-One woman's quest to survive infertility: Collateral Damage-Part 1

Saturday, January 26, 2019

Collateral Damage-Part 1

Collateral damage. Dictionary.com defines it among other things as “any damage incidental to an activity”. Miriam-Webster calls it, “Injury inflicted on something other than an intended target”. Today I want to give some time and attention to the collateral damage of this infertility process, and to mourn for some of the things that have been lost or altered in my life.

I thought I was going into this with eyes wide open. Really. I had read about the effects of the fertility medications on my mind and body. I knew what kind of damage was going to be inflicted on my bank account due to the treatments. I knew that this was going to be hard on body, mind, and soul. I was ready. Or so I thought. I don’t really think that I understood how many parts of my life would get caught in the crossfire though. I was completely unaware of the injuries that would be sustained in parts of my life I considered to be far from the frontlines of injections and tear stained pillows. One of those parts of my life has been my friendships. The damage didn't happen all at once. It was such a slow shift that at first it was imperceptible. But now, as I peruse Facebook and see smiling faces at events I didn’t attend, with friends I rarely see, I recognize the shifts that have occurred in my friendships, and I feel a surge of anger at Infertility and what she’s taken from me.

I’ve always been lucky to be surrounded by a group of incredible ladies that I’ve been blessed to call my friends. Even after my wedding, my first bout with infertility, and the birth of my son, I was still intentional about creating consistent, meaningful space for my friendships. When I began my struggle with secondary infertility, I didn't think that anything would be different. I was Superwoman- I could handle it all. I could battle infertility and be cool and fun at the same time. We had just started treatments, and since I already had a son, I figured it was just a matter of time. I was in good spirits, and life was still pretty close to normal.

As the months and years wore on though, my life as I knew it slowly transformed. With each failed cycle, I increased my focus on my fertility. The pursuit of fertility started to occupy more and more of my headspace, and each pregnancy loss and failed cycle became harder and harder to bounce back from. As a result the rest of my life became smaller, more restrictive, more stagnant. Instead of being “fun” and “cool”, I felt like it took every ounce of my strength just to stay on top of what I needed to do to conceive and to feel ok while doing it.

Fast forward 2 years… Life now is centered almost exclusively on getting pregnant-. I spend time researching fertility topics, emailing clinics, looking up donors, cooking the right “fertility friendly” foods, doing fertility yoga, getting to acupuncture, giving myself injections, running to appointments, making sure I have enough sleep to grow a healthy egg, eliminating all toxins from my life, and monitoring my cycle. Life is at the same time so regimented, and yet completely unpredictable. At any moment I may be in the middle of a cycle or grieving over a failed cycle (I am not fit for human consumption in those moments). So, in order to be able to manage all of it, I’ve started turning down social invitations, and rarely extend any myself anymore. Poor sleep is bad for my cycle so I can’t stay out late. I have to give myself injections at certain times in the evenings, so I need to be at home those days. Happy hours? I’m staying away from alcohol and it’s tiring to keep explaining why I’m only having water all the time. Meet for a mani/pedi?- I’m avoiding nail polish because of all the phthalates. Shopping trips? Sorry ladies, I would, but I have no money for clothes with all these IVF rounds, and besides- why buy clothes when you keep thinking you’re about to get pregnant. Pilates and Zumba classes? I’m laying low during the TWW, and I feel bloated and uncomfortable during stims, so I have to pass. I haven’t traveled to see out of town friends for years, and girl’s weekends or daytrips are a problem for all the reasons above. Infertility is a logistical nightmare where I can never predict my availability, so it’s just easier to say no.

This state of limbo also makes it hard to have meaningful conversations with friends. I dread the standard, “What’s up?”. When I ask my friends this question I’m treated to stories about vacations, good times with friends, date nights, kids. When the question is directed towards me I have nothing to say, because nothing’s “up”. I’m in limbo. I haven’t been on any vacations, or read any great books, or started a new hobby, or hit a great exercise class, or checked out a new wine bar. Nothing. I’m doing the same thing I’ve been doing every week for two years. I’m still reading fertility books and blogs. I’m still making wheatgrass shots and green juice, and cooking fertility friendly meals. I’m still injecting myself with hormones. I’m still obsessing during the TWW. I’m still crying over another failed cycle. That’s it. I’m exhausted just thinking about it, and I don’t want to expend the energy trying to explain it to people who haven’t been there and just don’t really understand, so I just say something about how busy I am juggling work and my son and leave it at that. It’s hard to be living a life completely consumed by infertility, and not to be able to really talk about it. Sometimes it’s just easier to stay home, to keep my energy close, and to focus on surviving.

Don’t get me wrong- I still have good friends who allow me the space to be authentic and talk about my struggles, and I cherish them immensely. Even so, I grieve the friendships that are becoming more distant and I miss those people who used to be a bigger part of my life. I see many of my friendships starting to fade into the distance, and even though my mind wants to chase them and to tell them to wait up for me, I know those words wouldn’t be honest, because I have no idea of how long infertility will hold me hostage, and I have no idea what kind of person I’ll be when I emerge.

Like it or not, infertility is a transformative process that changes not only us, but our relationships too. Some may simply survive infertility, others may transform into something deeper, and others may fade as we move in directions. Whatever happens, I’m thankful for everyone who has touched my life along the way.

Thank you all for sharing this space with me tonight! Sending good energy your way.

"The art of life lies in a constant readjustment to our surrounding". Kakuzo Okakura (The Book Of Tea)

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My story

Killing me softly. When I think about my secondary infertility journey, I think of the thousand tiny deaths my heart has endured on this path. The silent wounds I bled from just under the surface of my public face. Never enough to knock me over in one day, but rather a quiet, stealthy wave, building loss by loss, until some days, I am swept away by feelings of grief, fear, unworthiness, and hopelessness. Killing me softly.

My heart feels drawn to writing this blog as part of my journey, and I hope that some entries of this blog will uplift and inspire you. But I am in the thick of this, and many days this blog will just be an invitation for you to cry alongside of me. I can’t promise anything from this blog, other than that it will be real, raw, unfiltered. Come and be real with me, and let’s give our pain a voice and find hope together.

PART 1:

My journey began three years ago just after my wedding at age 39. I was so excited to start my family, but I knew my age might be a factor, so I went to a fertility specialist right away, just to get checked out and maybe get a few tips for faster conception.. Instead of the green light I thought I would get though, they told me that I had very few follicles left, and had diminished ovarian reserve. The likelihood that I would have my own baby was poor they explained in their sterile room in their clinical tone, and they sent me out the door with adoption information and instructions to set up an appointment for an IUI if I was determined to try with my own eggs. I cried all the way home and for the next two months until we started treatment. I was absolutely devastated, but IUI was free there, so we went ahead with it one week shy of my 40th birthday. My son is 2 ½ now, and proof that miracles happen.

PART 2:

I love kids. Seriously adore them. I started as a camp counselor in junior high, and was babysitting regularly from the time i was twelve. Children always followed me like the Pied Piper, and were drawn to me in most every setting. I was the cool aunt, the fun friend when my friends started having children. I pursued a career in education, in order to surround myself with the joy and wonder of children and have loved every minute of it. On a personal level, I always knew that I wanted a house full of the energy, chaos, and joy that several children bring. My heart yearned for it on a soul level.

So in November, five months after my baby was born I went back to the fertility clinic to prepare for another IUI. The first one had gone off without a hitch, so I figured we were just a couple who needed a tiny push to get the ball rolling. We were supposed to begin treatment on the first day of my period, but that day never came, and I discovered in January that I had become pregnant naturally. A dream! I was so excited. I started planning the nursery (woodland animals- adorable!). I picked out the cute baby onesie for my son where we would announce on Facebook that his tenure as only child was ending. When we heard the heartbeat at our first ultrasound, I finally told my coworkers and friends and I started planning a joint maternity leave with a friend who was due a few weeks after me. But at the next ultrasound those plans came to a grinding halt and the doctor tried without success to find the heartbeat. Just like that, my little one was gone. I had a D&C. I didn’t order the onesie. I avoided the questions from my coworkers about how the pregnancy was going. I grieved deeply and privately. But I knew that miscarriages happen, and I was resolved to try again when my period returned. In May when my body was finally ready I called the doctor, and they said we could try an IUI again in June when my period came. But it never came, and in early July a beta confirmed I was pregnant naturally a second time. But my beta didn’t double on schedule, and at 5 weeks I miscarried that baby. I cried more tears than I knew I had, alone in my room. My husband is a loving man, but without having heard a heartbeat, the baby wasn’t real to him the way it was to me.

The only way I could think to escape my pain was to jump down the rabbit hole of infertility treatments, so we upped our game and headed to an IVF clinic. We would make embryos and pick the healthy ones to transfer! We would beat biology! We would have our baby! But one year and three retrievals later we were unable to produce even one viable embryo. Our final hope, our treatment of last resort, had failed. My heart had risen and fallen with each new cycle, each new batch of eggs, each new possibility of life, and hope and baby fingers and toes. The rigor of medication protocols, restrictive diets, yoga, acupuncture, and endless appointments had left me broken, distanced from friends, consumed by a singular focus and shrouded by a lingering aura of sadness. IVF was expensive, but my health insurance offered two more free rounds of IUI, so we decided to exhaust that before considering our next options. We decided to start the next cycle when my period came, but… it never came. I was naturally pregnant for a third time, this time at 42. Because less than 1% of women have three or more miscarriages I was overjoyed. I had already had two miscarriages, so this pregnancy would be the one that would stick! Our unexpected miracle. Our rainbow after the storm. I would take a newborn picture of her surrounded by IVF needles. I would show her how wanted she was. I would be an inspiration for older moms wanting to conceive! My original beta was strong, and even though my numbers weren’t doubling, they were on track. The doctor’s office congratulated me! It was happening! Until… it wasn’t. My beta plateaued, and the doctor told me to wait for the miscarriage. I was nine weeks pregnant when I lost my third baby and absolutely broken.

PART 3:

Balanced Translocation. Otherwise known as BT. A previously unfamiliar term for me, that would now define my reproductive future. It meant that some of my chromosomes had swapped places and that I didn’t have complete chromosomes like everyone else. I had all the right genetic stuff, just in the wrong places. This was the diagnosis given to me as part of my recurrent miscarriage workup. It meant that giving the right amount of chromosomes to a fetus would be difficult and unlikely. Multiple miscarriages were the norm, and even though many women with BT eventually go on to have a healthy baby at some point, the BT combined with the age of my eggs meant that my chances were incredibly slim. The words of the genetic counselor rang in my ears. I tried to be funny and cool about it. Inside I was falling apart. My marriage was strained, my friendships had become distant, my hobbies, dreams, and goals had been set aside- all collateral damage of the dream I had been chasing, which now seemed improbable.

So I jumped into support groups. I joined a sisterhood of amazing women, but a sisterhood that I never wanted to be a part of. I grieved the loss of a pregnancy with my own eggs, but I was determined to be enlightened and open to all possibilities. I dove into the world of donor eggs and donor embryos and started to lose myself in the online world of third party reproduction- Frozen, fresh, local, international- website after website, email after email. I scrolled through profiles of beautiful, fertile twenty somethings. I read countless posts from donors, donor recipients, and donor egg children . I researched books to read to my little one to explain how he/she came to be. I fell deeper and deeper into the world of infertility and I rarely came up for breath. It gave me some sense of control as my world was spinning out of control. It kept me company, so I didn’t have to be alone with grief.

So that's where I am now. Unsure of what comes next. I’m committed to having another child, and to giving my son a sibling, but it turns out I’m not ready to let go of the hope of using my own eggs yet. IVF isn't a viable option for a woman my age with diminished ovarian reserve and BT, so I have a few more IUIs planned, and the websites for donor egg banks bookmarked in my browser. My journey has been long and hard, and it isn’t over yet, but know the path I am walking is filled with women just like me and I hope that we can build an invisible but strong web of support. I’m honored to be walking next to all of you, and hope to get to know you and connect with your stories and experiences along the way.