Killingmesoftly-One woman's quest to survive infertility: February 2019

Saturday, February 23, 2019

At the Intersection of Joy and Sorrow

This weekend I attended the baby shower of a dear friend of mine. After struggling with infertility for many years she had been through it all- own egg IVF, donor egg IVF, multiple miscarriages, and finally donor embryo. This baby represented years of hoping and striving, so I was determined to be there, even though it was 85 miles away. It was a long journey that took me far from home but when I finally arrived, I realized that I had ended up right back in a familiar and frequently visited place. The intersection between joy and sorrow.

Deep emotions tend to inhabit the same spaces in our hearts and this is true for joy and sorrow. I'm surprised at how often it catches me off guard though. I was truly and sincerely happy for my friend. My heart had ached for her during her struggles and loss, and this baby was a hard won blessing- a true and miraculous gift!! Her baby was not only a wondrous gift for her, also a beacon of hope for me in the darkness of infertility. But that same baby who stirred up feelings of joy and excitement in me also triggered feelings of pain and loss. Watching my friend open baby clothes reminded me of the newborn clothes sitting untouched in my home- clothes I had lovingly purchased when I heard my second baby's heartbeat. Seeing those clothes reminded me of that baby I had lost, and the ones after. Seeing her round belly made me painfully aware of my empty one. I went to the bathroom. I cried. In the midst of all that excitement and beauty, pain had snuck up on me and made it's voice heard.

The unexpected intersection of these two seemingly opposite feelings- joy and sorrow- often happens for me now The joy of a positive pregnancy test is immediately followed by the pain of knowing it will likely be unsuccessful given my age and chromosomal condition. My son's birthday fills me with delight which is followed quickly by sorrow of knowing that he is getting older and I haven't given him a sibling yet. The joy I feel as I imagine giving birth to a donor egg child is met with the grief of my lost biology and all my years of failure.

In these moments I find myself at a crossroads, and I know need to make a choice. This odd intersection where my emotions collide is just a place to pass through, not a place to stay. In one direction I see joy stretched out before me. In the other direction I see the path of pain, sorrow, loss, and grief. I know that I can't move in both directions at once. I have to choose, and for the sake of my future child, I know that I need to move towards joy. So I take the time I need at the crossroads to fully feel my pain, and to honor it in my life. Then I pick my head up wipe my tears, take a step in the direction of joy, and start walking.

Sunday, February 10, 2019

Collateral Damage- Part 2

It was a beautiful wedding. A warm perfect summer evening in June. A small group of beloved family and friends. A heartfelt exchange of vows framed by rolling hills and a small lake. A hopeful start to a wonderful life. Happily ever after.

Fast forward 3 1/2 years, and we're fighting again. This time about a new car he wants us to buy. I want to hold off for a few months. Donor egg is on the horizon-a huge cost. The car would eventually become my main car, so I want to be involved in picking it out, but I’m overwhelmed at the thought of making several big decisions at once. We have to pick a clinic, a program, and a donor. I have to process through the pain of letting go of my own egg. There is no bandwidth in my mind for anything else right now. I want to wait until summer when the big decisions will have already been made, and we'll be moving forward with DE treatment. Our original argument about the car eventually and predictably circles back to the real cause of our discord. He’s upset that we‘re always stuck in a holding pattern. That we can’t make plans or big decisions. That we spend all available cash on treatments that never work. He feels that we are trapped by this quest of ours. He questions if we should stop. I don't disagree with anything he says, but every cell in my body knows that I can't stop until my baby is in my arms. We are at a stalemate.

This is just one of the many many fights we find ourselves in with fertility at its core. We have fought about everything from how undesirable sex has started to feel, to work time that he has to miss for our many appointments. We have fought about family visits that we haven’t been able to make because we need to stay near our clinic, about opportunities we have had to pass up to continue treatments, about general restrictions on our time, money, and we even argue about the stress than a new baby would bring since we have no family here and would have no money left to hire help.

It didn't start out this way. At the beginning I was sad, he was supportive, and we were hopeful. But this is a long journey, and we didn't train for a marathon. We have been on the fertility roller coaster since one month after our wedding in 2015. We started right away with the appointments, tests, grim news, stress, treatments. Not exactly the lighthearted romantic kickoff to married life I would have liked. Our son was conceived via IUI, and just when we were starting to find our stride as parents and reconnect as a couple we started treatments again. What followed has been two years or living by my cycle, spending our cash on treatments, timed fertility sex, and lots and lots of changes to plans. This fertility journey never goes the way we thought it would, so we’re always readjusting plans and expectations. We handle the stress in different ways and have different supports. Our feelings of loss are different. Our moments of crisis don’t align. Sometimes it is hard to connect, even as we are both hurting. Perhaps the worst part is that there's no end it sight, so we don't even know how long we have to hold on for and when we can hope for relief. It’s eating away at us day by day, month by month, year by year- a slow corrosion of what we brought to the alter on our wedding day.

My husband is a wonderful man, and I hope we’ll be ok, but I’ve seen the statistics on divorce and infertility, and they scare me. I don’t know what his breaking point it, what mine is, or what ours is as a couple. We are in uncharted territory here, and as hard as it is to navigate survival individually, it’s seems even harder to navigate survival as a couple. These were supposed to be our first blissful years of marriage-our honeymoon period. Infertility took that from us, but I am hopeful that walking through the fire like this will forge an even deeper and more loving lifetime bond. I dream of how it will be in the other side of this. I will never be the same person I was before, and I know we can never be the same couple we were before, but hopefully we can transform into something better, richer, and deeper than we ever imagined.

Sunday, February 3, 2019

Tales from the Other Side

This summer, after three IVF cycles over a one year period with no viable embryos to transfer and my third pregnancy loss (naturally conceived), we discovered that I also had balanced translocation in addition to my age/egg quality issues. We decided that my age combined with my chromosome issue made continued IVF a very expensive gamble that we weren't willing to take. The odds were just too low, and the doctors were clear that donor egg was my only realistic option. In the months that have followed I have been working on coming to terms with letting go of a genetic connection with my next baby and embracing donor eggs, but I'm still in the grieving process and I'm not quite ready to move on. I've done some low tech IUI cycles this fall and winter, and this month we tried a medicated timed intercourse cycle. Most days telling this story of repeated failures and broken dreams would leave me in tears, but today I feel positive and optimistic. Why? It's because it's only day three of the TWW. The first four or five days are my sweet spot and I'm always pretty upbeat. I let myself feel free to believe that the cycle was a success and that I'm pregnant. The pregnancy test is far enough in the future that I know I won't have to face any evidence to contradict my belief. I'm dreaming of rainbows and riding high on hope! (week two of the TWW is a different story, but that's another post for another time).

So today, I want to showcase hope and pay tribute to some of the amazing women who have helped spark and sustain hope in me during difficult times. All of these women have been incredibly brave in sharing their moments of pain with the world in order to uplift others who are struggling. Each woman has a unique story, and has come to motherhood in a slightly different way. They have all made it to the other side of infertility, and are here to light a way for those of us still in the dark night of that path. I hope that in their stories and successes all of you are able to be inspired and find strength.

1)Meet Julia Idichova. Her story is one of conception against all odds, and she has been a strength and guide for me since the very start of my journey. Julia's story was similar to mine: advanced maternal age, low AMH, high FSH, mother of one child yearning for a second. Julia documents her struggle to conceive in her book Inconceivable: A Woman's Triumph over Despair and Statistics, where she tells of being turned away from IVF clinics because of her high FSH. Julia proceeds to explore a variety of options from IUI to surrogacy to alternative healing experiences. After making sweeping changes to her diet and lifestyle and lowering her FSH, she eventually goes to see one more specialist hoping for a better outcome. Spoiler alert: Julia was never treated by the specialist. He ordered a pregnancy test at the first appointment and she actually discovered she was pregnant naturally. Julia is now the mom of two grown girls, and the founder of the Fertile Heart community. She says that her journey was, "A pilgrimage that led me to re-claim my fertility in the most awe-inspiring way", and she wants us to be able to do the same. Her website has links to her books, visualizations, a host of success stories, and much more. Julia encourages us to trust in our intuition and to believe in the power we have within to improve our fertility.

https://www.fertileheart.com

2)The second woman I'd like to celebrate is Maya Grobel. This woman is badass. She pursued her dream of parenthood fiercely, tore down every barrier she came up against, and is now the mom of a little girl via embryo donation after a 4 1/2 year battle with the infertility beast. I recently discovered her this past week while watching the Netflix documentary One More Shot. I would recommend watching this 100 times over. Maya and her husband Noah allow us into their infertility struggle with so much vulnerability and authenticity that we come away inspired to honor our pain instead of turning from it in shame. I laughed with her, I cried with her, I hoped with her, and I rejoiced with her. In addition to her Netflix documentary she also has a blog called Don't Count your Eggs.

https://dontcountyoureggs.typepad.com/

3)Last but not least- Camille Preston. Camille's TED Talk: A Journey Through Infertility: Over Terror's Edge resonated so deeply with me. Just like most of us, she "coveted motherhood at such a cellular level". She talks about the mounting intensity of effort and energy after each failed cycle, the rising desperation, and finally, learning to surrender control. She shared how multiple failed rounds of IVF "kicked my tail and nearly broke me". She didn't break though- after 8 rounds of IVF she welcomed a child into the world. Camille's willingness to jump into the depths of longing, loss, and pain helped strengthen her sense of self and opened her up to a deeper and richer life experience. Camille is inspiration for all of us living "on terror's edge.

https://www.youtube.com/watch?v=6BBmMtVfZ4Y

Happy Sunday everyone. Have a wonderful hope filled week!!

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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.