An open letter regarding my infertility journey
Dear family, friends, and greater community:
Something pretty big has been happening in my life for the last year and a half. A challenge on par with my breast cancer battle, in some ways even harder. I’ve been quiet about it for a long time, but for various reasons I feel that it’s now time for me to share my story.
My journey to become a mother began well before I actually wanted a baby. At 28, I was diagnosed with breast cancer and was told that the chemotherapy I would receive could damage my fertility or even cause me to go into permanent menopause. At the time, I wasn’t even thinking about children. I had just started my career and was not in a committed relationship with someone who I would consider a potential future co-parent. But some instinct inside of me took over and told me that I had to fight for my fertility, for my future.
Against the original wishes of my oncologist, I fought to undergo a cycle of egg freezing prior to chemotherapy. Egg freezing is a technique that has recently gained popularity among women in their 30s who are either single or who wish to delay having children for other reasons. It’s also now recommended as the standard of care to preserve fertility in cancer patients. Normally, every month a woman’s body produces 1-2 eggs, which, if fertilized at the right time may implant into the uterus and produce a pregnancy. In egg freezing and it’s more advanced cousin IVF (where the eggs are fertilized by sperm in a lab and then implanted back into a woman’s uterus), the idea is to stimulate the ovaries using injectable drugs so that the ovaries produce many eggs in the same month, which are then retrieved with a needle in an outpatient procedure with mild anesthesia.
The chances of getting pregnant depend on a number of factors, one of which is a woman’s age. The younger a woman is, the more eggs she has and the better shape her eggs are in, therefore, the more likely she will be to get pregnant and maintain a healthy pregnancy. Egg quality and quantity start to decline around age 35 and by age 40, the chances of getting pregnant are less than 5% each month. So the idea is that if you take the eggs out when the woman is younger, you essentially have a much higher chance of pregnancy when you reintroduce these eggs to the uterus.
But - and there’s a big but - each frozen egg individually only has about a 4-5% chance of becoming an actual healthy baby, and the younger the eggs are, the higher the chances. So first of all, egg freezing is never a guarantee. And second of all, you would statistically want to have somewhere between 10-20 eggs to have a good chance at just one live birth.
I got 5. Well, actually I only got 2, and then 3 more matured in a petri dish in the lab overnight. Those 3 have an even lower chance of working. I was absolutely devastated at the time. I had done everything I was told and yet something went wrong and things didn’t work out. That was when I first realized that I might never be a mother, at least in the traditional way. While it was painful, I had bigger fish to fry at the time such as saving my own life, and so I packed my feelings away inside a little box and geared up for chemo.
Thankfully, I made it through breast cancer and here I am 8 years later, disease free. And a few months after chemo ended, I got my period back! Overjoyed, I mistakenly took this as a sign that my fertility had returned and that I was just the same as any other 29 year-old. I had another 5 years to putz around, date, and travel the world before settling down and pumping out those kiddos, right?
Wrong. No one explained to me that a period does not equal fertility. At age 34 I decided to freeze more eggs because I was still unmarried and I had heard that 35 was the magic number where my eggs would really start to dry up. This time, I only got 2 eggs. It seems that my fertility had indeed been impacted by chemo, and I was diagnosed with diminished ovarian reserve. In short, I have fewer eggs left than my age-related peers. Diminished ovarian reserve made me a poor candidate for egg freezing and IVF because these procedures require many eggs in order to produce just one live, healthy birth. Why? It was once explained to me this way: Imagine you put a plant inside of a greenhouse. Then you turn off the lights, turn off the temperature control system, and smash its windows during a snowstorm. Then you fix the window and turn the lights and the heat back on and see who has survived. Poor little plants.
OK. The knowledge that I wasn’t normal hurt, but I wasn’t deterred. I finally married my wonderful husband at age 35 and we started trying to get pregnant right away. Part of that was because of my health history, and also because I carry the BRCA1 gene which causes increased rates of breast and ovarian cancer. The only way to reduce the risk of ovarian cancer is to remove one’s ovaries between ages 35-40. So our timeline is a little more stressful than the average couple, unfortunately.
I really thought we were going to have sex on our honeymoon and that I’d get pregnant right away. Foolish me. While for some lucky people this is how it goes, at least 1 in 8 couples (even more in my age group) experience infertility and struggle to conceive naturally. Part of the reason that I am writing this letter is that 1 in 8 is a huge number of people, and yet most of them do not publicly share their situation because of stigma, shame or other privacy concerns. They suffer silently and without support or awareness of their loved ones and of the greater community at large.
In our case, it turns out that not only did I have low ovarian reserve, but my eggs had quality issues, my uterine lining was thinner than normal, I had a blocked fallopian tube, my husband’s sperm had a high DNA fragmentation rate, and he had a varicocele which essentially fries the sperm (that’s why they tell men trying to conceive not to go in jacuzzis). In short, we have approximately a 0% chance of conceiving naturally.
One of the things that has been really hard on this journey is people’s lack of understanding of the basic science behind fertility and reproduction. I cannot tell you how many well meaning friends and family members have reacted to my sharing this very personal and painful experience with them by giving me the advice, “Just relax and it will happen” or “Stop trying, and what is meant to be will be.” In our case, however, it literally cannot happen naturally and our only choice is to go through expensive, painful and heart-wrenching medical treatments. So I hope you can see how invalidating and unhelpful such comments are...
We started fertility treatments only a few months after our wedding due to my health history and our shortened timeline. To date, we have been through hundreds of injections and pills, 8 egg retrievals under anesthesia, a trip to the emergency room and overnight in the hospital due to a rare complication from one of these procedures, saline sonograms, hysteroscopy, uterus biopsy, varicocelectomy, 52 eggs taken out of my ovaries, dozens of embryos that died in the lab, 3 embryos that were genetically abnormal and therefore discarded, and 5 embryos that died inside of me. 7 eggs and 8 embryos of varying quality (some genetically tested, others not) remain frozen as of today. Our little bundles of cells, our hopes and dreams.
It’s been a lot.
A lot of physical pain, nasty drug side effects (the worst of which for me was debilitating fatigue), extra COVID-related stress, but worst of all, the pain of loss, over and over again. While cancer wasn’t easy, It was so easy for me to write about it. I was Stage 2 and had a 90-95% chance of survival. Sure there were moments of doubt and fear, and there still are, but overall I generally felt hopeful and supported. This is different. I don’t know that this story has a happy ending. In addition to the physical losses we experience, there looms the loss of something bigger, the loss of a dream, the chance to see the future of our ancestry, the union of our connection and love, embodied in a creation that we would give the gift of life to. What if we don’t get to experience that? Ouch.
Which brings me to my next point. Another reason it has been so hard to share this story is that people, even well-meaning friends and family, have sometimes reacted in very unhelpful and unsupportive ways. As a result, I have started to avoid certain friends and situations, which is incredibly isolating and also sad. I alluded to one of these ways above - telling a woman going through infertility to “just relax.” But other comments include things like, “Are you sure you want kids? Mine are so annoying!” “Why don’t you just adopt? There are so many children out there who need homes.” “Can’t you just use a surrogate?” “Have you tried acupuncture?” Or, my recent favorite: “No offense, but do you think this is a sign that you were meant to adopt or something instead?”
Part of the reason I am writing this letter is to address some of these comments, because a) I am tired of avoiding people and b) I don’t want to get hurt anymore! I know people aren’t trying to be hurtful but clearly there is a lack of awareness about what is and isn’t ok to say to someone going through infertility, probably due to the fact that no one really talks about it. I also want to preface this by saying that this is not meant to be accusatory or sarcastic, and I am not trying to call anyone out. My purpose is to try and explain why these comments are hurtful and suggest ways that people could be more supportive of me and of other couples going through something similar.
Unless you yourself have experienced infertility, the ONLY comment you should be making to an infertile man or woman is, “I’m so sorry you are going through this. How can I help?” That’s it. I could spend an entire 10 pages writing about why each of the comments above is unhelpful and inappropriate, but here are just a few responses to illustrate the point: If you don’t like your kids, then why did you have them? Cuz I’d give anything to be in your shoes! And if there are so many kids who need homes, then why didn’t you forgo having your own biological children and adopt? Did you know that infant adoption costs $50-$100K and that the birth mother has the option to rescind the adoption a month after the child has been born and placed with the adoptive parents? Did you know that surrogacy costs over $100K and is not a guarantee, also that it is a possible alternative for women who have trouble carrying a fetus, not for women who cannot create a healthy fetus? Would you tell someone who has cancer that they shouldn’t go through chemo because it’s a sign that they weren’t meant to live a full life? Of course not, that would be ridiculous. Infertility is a medical diagnosis with available treatments, not a curse or sign from God/ the Universe! The treatments aren’t easy or fun or cheap, just like chemo isn’t easy or fun or cheap. And yes, sigh, I have tried acupuncture, all types of therapies, prayer, supplements, meditation, not trying, and doing handstands after sex to make sure the sperm really gets up there. OK, that last one was a joke.
And by the way, just to clarify - there is nothing wrong with adoption or using donated eggs and sperm and you know what, if push comes to shove we may turn to those alternatives and I am sure we will love those children every bit as much. But these are alternatives, they are not substitutes. They are different and just because you can gain a child through these methods does not take away from the current pain and loss of not being able to conceive, carry and/or birth a child. This is sort of akin to telling a woman who has just had a miscarriage that it’s not a big deal because she can just get pregnant again and have another baby.
I am sorry for the rant in my last paragraph, but I had to let that out. I had to be honest so that maybe through my words you can feel my experience my frustration, my sadness, my grief. And I also want to apologize. I am sorry that I can’t be the friend who plans your baby shower right now, or maybe even attend it at all. I am sorry that I cannot coo over your ultrasound and super cute baby pictures. I am happy for you, I am! But I am also super sad for me and sometimes receiving unsolicited texts with these images can be very triggering, so I find myself retreating into a silent isolation because I am afraid that you will think I am petty and jealous for asking you to stop sending me these hallmarks of your joy. I am sorry that I don’t want to call you or Facetime because right now due to the pandemic you are a stay at home mom and that means that the conversation will be dominated by your kids. I want to be there for you, and you deserve that. But sometimes I just can’t handle it right now and that is even more sad for me because it’s a choice between having a triggering conversation or just having no conversation at all. And finally, I am sorry but I don’t want to hear about the trials and tribulations of your breastfeeding and/or pumping experience. If I am lucky enough to even birth a child, I will not be able to breastfeed, courtesy of breast cancer, which I feel really bad about as is.
Again, nothing I wrote in this last paragraph is meant to be sarcastic or accusatory. I truly am sorry and I wish that I could put my feelings to the side and just let all of the above roll off my shoulders. Some days I can, but some days I can’t. All I ask is that you see me. Try to understand what I am really dealing with here. Put yourself in my shoes. And try to be sensitive when you can. Ask me how I am doing. Ask me what my boundaries currently are (they may change at times depending on what’s going on). I do want to know about your life, and I do want to know about your kids. But maybe post your baby pictures in a shared album rather than directly texting them to me. Or call me to let me know you are pregnant before sending me a text announcement with a picture of your sonogram. Some friends and family have been doing a great job with this and I want them to know how much I appreciate that from the bottom of my heart.
Finally, and hopefully this goes without saying, but please be respectful and kind in your response to this letter. Know that this was incredibly hard for me to write and to publish, and that it wasn’t meant to shame anyone, ask for advice, pity, or invite your judgment of my feelings and actions. I do hope it can help others who are going through this, let them know they aren’t alone, and provide some awareness and education on this topic for those who are fortunate enough not to go through this, but who may be unknowingly hurting people who are. And I hope that my personal relationships with well-meaning friends and family grow stronger as a result of this vulnerable share.
It’s a New Year, with new hope for many people. After all we’ve been through, we are continuing to move forward with IVF and hoping that we will soon see the fruits of our labor, pun intended. If you can keep us in your thoughts, in your prayers, and in your hearts we would appreciate it. And if and when there are updates to share, I will share them. Thanks for reading and listening.
With respect and love,
Alona