Editor’s Note: This blog was intended to be posted on April 28th in support of National Infertility Awareness Week. Coincidently, at 9 and a half months pregnant, Alexia’s water broke and she ended up giving birth that night! We thought that posting this blog around Father’s Day was the next best thing. Holidays like this can be deeply painful for those struggling to conceive. Always remember that it is ok to allow yourself to feel whatever you need to and that you are not alone in your journey.
One In Eight
We are 1 in 8. One of the every eight couples in the United States that struggles with infertility. To commemorate National Infertility Awareness Week, I wanted to share our experience with infertility after cancer in the hopes that couples like us can feel less alone in their struggle and to raise awareness for this medical condition that is so often misunderstood and underrepresented.
It has been a year since my first blog for TCAF, and I finally feel ready to openly talk about why it took so long to write this. This time last year was extremely hard for me. A year and four months out from Nate’s RPLND, life had slowly begun returning back to normal and the realities of what that meant were hitting hard. Not only were we recovering from everything we had been through during our cancer journey, but we were suddenly facing a new challenge... infertility.
To give some perspective, the night that Nate was diagnosed with testicular cancer back in 2013, his first concern was whether it would affect our ability to have children. While most people might think “has the cancer spread?” or “am I going to die?” my sweet husband could only think about whether cancer would rob him of the opportunity to be a father. No more than 12 hours from that fateful phone call, we were sitting in the waiting room of our local cryobank to bank his sperm. I so vividly remember those moments, the tears uncontrollably streaming down my face. I remember thinking in disbelief, “how is this our life?” In a day’s time we had gone from a normal couple to one facing cancer and potential infertility, and it was terrifying. There were so many unknowns that our life was instantly put on hold, but the one thing we could control in the moment was to ensure that we had options if things didn’t go as planned.
Thank goodness we did, because nearly one year, an orchiectomy, three cycles of BEP chemo, and an extensive RPLND later, Nate was left infertile as a result of his cancer treatment. We had been through so much - more than most people go through in a lifetime - and now we were facing a new, equally difficult struggle.
Grieving the Loss of Fertility
Infertility is painful in a way that is difficult to put into words. It is utterly all-consuming and far more personal than even a cancer diagnosis. It can test your faith, your relationships, even your self worth. Losing something so profound is devastating, and Nate and I grieved the loss of our ability to conceive naturally both as a couple and as individuals. It was incredibly isolating, especially being at an age where many of the couples around us were getting pregnant with ease. On top of that, we were constantly bombarded with invasive and insensitive questions and comments regarding our plans to have children, making us feel even more heartbroken and alone.
To make matters even worse, cancer continued to complicate our plans to start a family. Nate had a residual pelvic mass following his RPLND that his doctors wanted to monitor very closely. We were constantly heading up to Memorial Sloan Kettering in New York from our home in Maryland for scans, and were left with a “watch and wait” response every time. We felt strongly that it wouldn’t be right for us to try and have a baby while his health status was still up in the air, so our lives remained in cancer limbo despite him being in remission.
In the fall of 2015, the time we had originally planned to try and have a baby had Nate not had cancer, we decided to pursue our first cycle of in vitro fertilization, or IVF. IVF is an invasive, costly, and highly technical process. Like cancer, it is an emotional rollercoaster that makes you feel powerless. From a medical standpoint, IVF involves the growth and maturation of eggs in the woman with the use of hormone injections, their surgical removal, and their fertilization with the partner’s sperm, in our case using a technique called intracytoplasmic sperm injection (ICSI). If all goes well, the fertilized eggs continue to grow in a petri dish until they become a ball of cells called blastocysts, which can then be frozen for later use or implanted back into the uterus of the woman.
We knew from the beginning that we would freeze our embryos because we wanted to make sure Nate had a clean bill of health before having a baby and that pesky pelvic mass continued to concern both us and his doctors. While I would say the IVF process is totally doable (after seeing what Nate had been through, it was a walk in the park!), it certainly isn’t fun to go through and we found ourselves in a sudden role reversal. Being that the fertility treatment had a much more significant physical impact on me, Nate became my caregiver of sorts. Every night, he would administer injections in my abdomen and each morning we would go to the fertility clinic together for “monitoring” appointments, which involved blood work and invasive ultrasounds to check the growth of follicles in my ovaries that contained eggs. Once the follicles were ready to go, my eggs were retrieved. I remember being taken back to the surgical room, swarms of unfamiliar medical staff around me. I couldn’t help but sob uncontrollably. I wasn’t scared of being put under or of the pain of the procedure, but I was sad that this was how we were making our future baby. It felt so cold and impersonal for something that is usually deeply intimate. It’s not sexy, it’s not romantic, and it’s painful in more ways than one. I was grieving the fact that this was our only way to have a biological child. To top it all off, I ended up with a rare and potentially serious complication of the egg retrieval process called ovarian hyperstimulation syndrome that, had we planned on transferring an embryo right away, would have prevented us from doing so. My ovaries were the size of grapefruits and I was so uncomfortable! It was all worth it in the end though and we ended up with healthy embryos that we were able to put in the freezer for future use.
In August of last year, we headed to Memorial Sloan Kettering for one of Nate’s surveillance appointments. It was at this visit, more than a year and a half after his RPLND, we finally received the news we had been waiting for. His doctors felt that the mass in his pelvis had remained stable in size long enough that it was most likely nothing of clinical significance. We didn’t have to come back for a whole year! We were ecstatic as we felt the tremendous relief of our cancer cloud lifting. We could finally move forward with our lives with a greater certainty that things would be ok.
Starting Our Family
We began a frozen embryo transfer cycle and ultimately transferred one healthy embryo on my birthday last year. About two weeks later we received the best news… we were finally pregnant! We couldn’t believe that after being given only a 50% chance of success we had gotten pregnant on the first try!
Pregnancy after infertility brings with it its own challenges, and ours has been no exception. But not a day goes by that I don’t reflect on our incredible journey to get to this point. As I sit here writing this blog, our little miracle of love and science due any minute, I am grateful for so much. For how cancer has changed our perspective, for how infertility has made us appreciate the miracle of life, for science, for the fact that we thought to bank sperm when we did, for how our relationship has endured through great trials only to be strengthened – the list goes on.
One of the biggest blessings through our struggle has been the relationships we have formed with other people going through similar experiences. The infertility community, like the cancer community, is huge, and social media has connected us with people from all over the world in a modern day support group of sorts. Like cancer, one can’t truly understand what it’s like to walk this road unless they have experienced it themselves, and just as my good friend and TCAF blogger Steve Pake provided me with advice and support during Nate’s battle with cancer, the support from internet strangers and now real-life friends alike has been invaluable.
I hope that our experience highlights the importance of banking sperm prior to treatment for testicular cancer (usually after an orchiectomy is ok too as long as it is prior to chemo or an RPLND). In the midst of the chaos and urgency that often surrounds a cancer diagnosis, it can be easy to put non-life threatening factors that influence long-term quality of life aside. In fact, my husband’s own urologist at the time made a point of telling us that we “wasted our money” when we told him Nate had banked sperm prior to treatment. It didn’t make sense to me then why a doctor would say this and it certainly doesn’t make sense to me now. Needless to say, Nate is no longer under his care! Whether you are a teenager with no plans to have kids any time soon or a married couple that wants to conceive immediately, banking sperm can allow you to regain some control of your reproductive future following a cancer diagnosis. Like fertility treatments, fertility preservation can be prohibitively costly and is often not covered by insurance; however, organizations such as Livestrong provide assistance to cancer patients with financial need to help them preserve their fertility and start a family. (Pro tip: Fertility clinics and cryobanks often provide early morning “emergency” appointments specifically for cancer patients. Don’t hesitate to call your local one for more information!).
Infertility, like cancer, is a medical condition and should be treated as such. Currently, only 15 states have some sort of mandate requiring infertility coverage by insurance companies. We were so lucky to live in one of them and while it still cost us thousands of dollars, the fact that we had coverage at all was huge; however, most couples have to pay 100% out of pocket for their treatments to start a family regardless of the underlying cause of their infertility. This has to change.
If you are struggling with infertility, whether it be due to cancer or any other reason, you are not alone. There is no right or wrong when it comes to the extremely personal decision to build a family and the method by which a couple chooses to do so, but regardless of the road you take, support is out there. There are so many people who understand what you are going through and there is hope. I hope that our story and our miracle baby can truly be a testament to that.
To learn more about infertility and how you can support legislature to help couples like us start a family, please visit Resolve.org.
Alexia Karanikas is a 31-year-old daughter, sister, new mom, and happily-married wife residing in the DC metro area with her husband and three year testicular cancer survivor, Nathan Ballantine, and newborn son Milo. Alexia is a scientist with a PhD in microbiology/immunology that currently works in military health and science consulting. Nate is a business analyst and IT project manager for a retail company. Both from Michigan and college sweethearts, Nate and Alexia enjoy photography, traveling, and weekly frozen yogurt dates. They are involved in the local cancer community, working to raise money and awareness while also providing support for other individuals in similar situations. Alexia has been a volunteer caregiver mentor with Imerman Angels since January 2015 and has blogged about their experience with cancer and survivorship on their website, Le Petit Crabe.