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My husband and I felt excited to “pull out the goalie,” as he affectionately called taking out my IUD. None of our friends had kids yet and we still felt young, in our late 20s. We had decided to start trying for children early because I have a gene mutation called BRCA2.
BRCA2 is a genetic disorder common in Ashkenazi Jews. It means I have a 72% likelihood of getting breast cancer in my lifetime. Because of this increased risk, my oncologist recommended that my husband and I have children before I turn 30. She explained that research has shown that the risk of breast cancer may go up if you have children after age 30, so it seemed smart to start having children early. My first cousin was diagnosed with breast cancer at the age of 33, and I didn’t know when or if I would get my own cancer diagnosis.
I removed my IUD, and we started cycling through the monthly ups & downs of hope and disappointment. Within six months, we had tests taken that suggested we were infertile. We met with our fertility doctor and learned that IVF was our best chance to have children. As our doctor talked us through the statistics, it dawned upon us that IVF did not guarantee a baby. We would be making some difficult decisions. As anyone who receives this kind of news feels, it was heartbreaking.
The first agonizing decisions were whether or not to test our embryos for the BRCA-2 gene. I could not help but think about myself. Here I was, alive, despite my gene. What if my mother had a choice to discard me as an embryo? But I was also sick of the MRI’s and mammograms I had to rotate through every six months. I hated to think about whether I would someday need a mastectomy and that my aunt had to watch her child get cancer.
What guilt would I experience if I lived to see my child have cancer that I could have prevented? On the other hand, what culpability did I have if I chose not to transfer a normal embryo that did have BRCA, who could live as full a life as I have? My husband and I ultimately elected PGD genetic testing, which screens the embryo for the BRCA-2 gene. But, I continued to feel ambivalent.
As our PGD test was being built for us, I had an MRI come back with a lump that looked suspicious. Luckily, the biopsy showed the lump was benign, but it made me feel more confident in our decision to genetically test our embryos. Getting a call to come in for a biopsy was so scary. I felt petrified that I had cancer, and I did not ever want to put my child through that.
Our first IVF round seemed promising and exciting, but a month later we learned that we had only two genetically normal embryos, and only one was BRCA free.
Then, came the next round of agonizing decisions. I had always imagined having two children. We would obviously transfer the BRCA-free embryo first. But should we transfer the BRCA positive embryo next? I didn’t know what to do. I felt angry that I had to make this decision, a life or death decision for my embryos. I worked through all of my options over and over.
If the transfer worked, it might be another two years before I could transfer my other embryo or elect for another IVF round. I would be biding my time. If I did decide to do IVF again in a few years, my eggs would be older. There was some research connecting reduced egg reserves to BRCA as well.
I also dreaded the alternative scenario—a failed transfer. Then, I would have no choice but to do another IVF round or face the BRCA positive embryo.
I would like to say that my husband was on board, but I pressured him into doing a second IVF round. I wanted more options. I was anxious about facing a failed transfer. I was anxious about a transfer working. My mind couldn’t wrap itself around the embryos we had.
After an MRI found a second breast lump, we had to fight to get our oncologist to sign off on our second round of IVF. He was concerned about the increased estrogen. I also worried about the long-term effects of infertility treatment on my cancer risk. There is little research on how infertility treatments may impact long-term cancer risks, but I knew for certain that we couldn't have a family without IVF. I did not know with certainty if I would get cancer. The second lump ended up being benign as well, so we forged ahead.
Through sheer good luck, our second IVF round left us with three genetically normal embryos.
We are now two years past the deadline my oncologist set for me. We are looking forward to transferring an embryo soon. I try to stay focused on taking it one day at a time. Through this painful process, I am careful not to deny myself all of the emotions that come with the ups and downs of infertility. Denying feelings, even the most painful ones, actually leads to an increased likelihood of depression and anxiety.
So, I allow myself time to cry, eat chocolate, and go to bed early. I allow myself to feel angry and bitter, as needed. I can’t tell you how many times I’ve muttered f*** that b**** when I’ve learned a friend is pregnant. I allow myself to feel an unnamed yearning—my husband and I joke that is my uterus crying out. My dogs get the brunt of that one. Allowing these feelings lets me ride them like a wave. And when I ride them, sometimes for days, then I can land on the beach. A little more peaceful, a little wiser.
I also had a light bulb moment after my MRI biopsy. I realized, whether it was a baby or cancer, I had a responsibility to live my life to its fullest. There was so much I couldn’t control. But, I could control how I spent my time and whether my life had meaning and forward momentum.
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At that time, I took a deep dive and re-evaluated my life. I am a mental health counselor. I made the leap into the unknown and started my own private practice and doing therapy online. Ever the rule follower, I had never done anything that courageous before. But it showed me I had the ability to take charge of my life.
I also found new ways to bring love into my life. We fostered a puppy who ended up being pregnant (cue eye roll). The puppies were darling and destructive and distracting. We ended up adopting our foster pup, which has kept my heart full. I have emphasized having “exciting” experiences. I am a total homebody who hates adrenaline, but I have pushed my boundaries by dancing at clubs, ziplining, and climbing because I recognize how important it is to make my life full.
Infertility has taught me that I can do so much more than I ever thought I could. Infertility has challenged, and stretched, and matured me. Heck, I’m a business owner now!
It has also taught me some powerful lessons, like how important it is to focus on the things we do have control over and let go of the things we do not have control over. Infertility has been a constant reminder that we are all on our own life path, and we have to be patient with that journey. There is no way to predict what that journey will bring and so it’s important not to compare ourselves to others.
And this may sound dour, but infertility reminds me that life is full of unpredictable moments of loss. Recognizing that allows me to do my best to embrace life, knowing there are no promises and live each day like I am the embryo that lived!
Elana Voronov is a mental health counselor in Denver, Colorado. Elana and her husband have been infertile for 3 years. She has been through two IVF rounds and is excited to finally transfer an embryo. Elana likes to play with her two pups, get her butt kicked at Orange Theory Fitness, and hike with friends. She is passionate about working with clients who are struggling with infertility, helping them move through their grief and find meaning in their experiences. And her clients love finally meeting a counselor who understands what ICSI, BFN, & PUPO actually mean. You can find Elana at her website: https://www.oaktcounseling.com/ and on Instagram at @oaktcounsel.