The three days between diagnosis and that chemo treatment were a blur. I was fortunate that my mother helped spearhead the doctors appointments. When my doctor informed me that the chemotherapy could impact my fertility, he suggested I consult a fertility specialist. My Aunt had used a fertility specialist to bring my two beautiful cousins into the world, and my mother had the fertility specialist’s cell phone number, which came in handy since many were out of town for the holidays.
Dr. Cekleniak, a fertility specialist at IRMS St. Barnabas in NJ met us after hours since time was of the essence and she wanted to discuss my options. She and my oncologist had spoken prior and she looked at me with her big beautiful eyes and delivered a blow, perhaps equal to
the one I’d received a couple days prior, when my general practitioner called while I was packing my suitcase for the east coast, to tell me I had cancer. I was numb from the news of the cancer and was having trouble processing the fertility implications. I remember fragments, “Your cancer is aggressive…There is no time to wait…You need treatment right away. It could take months for you to be ready for a retrieval. If it were me (because my mother had asked her what she would do in this situation) I’d deal with the cancer and then reevaluate my options. I’m sorry.” Despite the numbness, I cried. I cried because that day I felt like my dream of being a mother was slipping from my hands. I had spent all this time focusing on building a career so that I could be an example of a strong working woman for our future child and in one fell swoop, six months after my 30th birthday, I had cancer and may never have that future child. At least not now, not until we get this cancer out of my body.So I went through all the rounds of chemo, the radiation, and single mastectomy. I was trying to find a “new normal” and put the idea of having a family into the future. My mother met women who had estrogen sensitive breast cancer and went on to have children after their breast cancer diagnosis. Some of them had preserved their eggs or embryos in advance of treatment, others opted for two years on Tamoxifen instead of the standard five years. Since that time, studies suggest that being on Tamoxifen for ten years is more effective than the five years. It felt like my timeline was getting pushed further and further back.
I began contemplating the risks versus the rewards of getting off Tamoxifen after two years to try to retrieve eggs. The risks: I’d cut my treatment short. Would my cancer be more likely to return? If I were lucky enough to get pregnant, how would I manage anything cancer related during the nine months of pregnancy- scans, a recurrence, and so forth? The reward: Eggs or embryos so that my husband and I could bring our future child into the world. I have to confess, we were not contemplating adoption at this point. We were still very hopeful that we’d find a way for me to have our child. I’ve later learned that adoption agencies consider early stage vs. late stage survivors differently.
A couple months after completing my final breast reconstruction, all of these conversations were tabled for something much more time sensitive. Excruciating headaches had led to a brain MRI that had led to a diagnosis of brain mets. My stage 2b was now stage 4 breast cancer. I had brain surgery and focused on healing. We had the brain tumor tested, it was even more estrogen sensitive than the breast tumor so my protocol stayed the same: Tamoxifen every day and Lupron shots every 3 months forcing me into early menopause. My mother brought me to a number of doctors for second and third opinions. She wanted to make sure she was doing everything to keep her 31-year-old baby alive. After they confirmed that we were doing everything in our power, I always asked: “Do you think I’d be able to have a baby one day?” I could see the doctor’s searching for the right words and for the most part it was, “It would not be recommended that you harvest or carry.” But were there other options? They didn’t seem to know much about what those other options were. Even one doctor, and she was a female, so even in retrospect I’m shocked by this response said, in reaction to my tears, “At least I’m not telling you that you have to have your ovaries removed.” Was that supposed to make me feel better?!
2013 is the year that I recovered from brain surgery, the year that I tried to pick up the pieces of my life, the year that I traveled because I didn’t know how long I’d have left and there was so much of the world that I wanted to see. It was the year that I needed to distract myself from the relentless feeling that something had been stolen from me: my future. Both my life, and the life that we had always hoped to bring into the world. When I wasn’t traveling around the world, I found myself in and out of a deep depression. For anyone that knows me, that is shocking. I’m typically a Tigger, not an Eeyore.
In 2014, I finally found my way to a psychologist at Sloan Kettering who specialized in young women with cancer. Our conversations always came back to desire for a family. My psychologist introduced me to a nurse practitioner that specialized in helping women with
I never thought this was how we’d be having a child but it didn’t matter. It gave me a lot of peace and a clarity of focus to know that there were potential options. It was the beginning of our surrogacy adventure, though it wouldn’t be until 2015 that we found our gestational carrier, aka surrogate, aka “Aunt” (she is actually no relation to us) Meghan. Aunt Meghan, our surrogate, with the help of our fertility specialist Dr. Cekleniak, is now 20 weeks pregnant. It has been 2.5 years since that meeting where we learned our options. It has been over a year since we met Meghan for the first time. It has been 4.5 years since I was first diagnosed with breast cancer. It has been 3.5 years since it metastasized to my brain. It has been a long road and we have learned much along the way. All the while, we’ve been filming a documentary to raise awareness for metastatic breast cancer and infertility. I hope that others find some solace in this resource eventually, and in the meantime, I hope this blog can serve as a resource. Even in this first post, there are many details to unpack in subsequent entries. Just the topics mentioned here to be addressed: fertility preservation, IVF post-treatment, adoption post cancer diagnosis, financial and emotional resources for cancer survivors as they consider building a family, impact on your relationship with your partner, egg donors, surrogates, and third party reproduction….and I’m sure other topics will come up along the way.
A recent study led by researcher, Catherine Benedict of Sloan Kettering focused on 346 women who were around 30 years of age and had finished cancer treatment about 5 years earlier. Almost two-thirds said they were concerned they may not be able to have children in the future. At the same time, only 13 percent of these women believed they were informed about their fertility preservation options. Regardless of whether you are currently contemplating your options, we need to spread the word so that women feel like they have the tools they need to make informed decisions. Yes, we’re potentially in panic mode trying to figure out how to handle our cancer diagnosis but it potentially goes hand-in-hand with an infertility diagnosis. We don’t know the answers. We don’t know whether the cancer will recur. We don’t know whether it will render us infertile, but just the feeling that we thought about it, knew our options, and made the decision for ourselves, makes a difference.
Cyan Gray Documentary
