While much of the last six months have been filled with joy and new beginnings, lately a cloud has descended tinting my perspective with fear. Those on the outside like to put my cancer in pretty little box with bow. They think that when I finished treatment, I could just pack up that cancer box and put it behind me — move on with my life. Sadly, that is just not possible. Cancer clings to my being and the inner workings of my psyche no matter how much time lapses. The thoughts and fears are ugly, raw and disorganized. As much as I want my recovery to be linear, improving within a clear path — it is not. Sure, life gets easier with time and there are days when I am not consumed with sadness and fear. But that sadness is always in the background, waiting to break free. Every time I hear news about cancer returning or the death of my friends it all comes rushing back. Cancer will always be there. It will always be a part of me. A horrible, awful history I share with nearly 13,000 new young women each year. The aftermath of facing my own mortality will forever haunt me. I have been stripped of the trust I once held in my future and the fragility of my life has been confirmed.
Last summer, I reflected on my desires to become a mother and shared how my husband and I were forced to put these dreams on hold. With time, new experiences and emotional exploration we were able to find a sense of purpose beyond starting a family. Though our hearts broke to put these dreams on hold we decided to refocus our lives in an effort to move on. We took up new hobbies, made more time for our relationship, and traveled the world. Throwing my time and energy into my art, the blog and breast cancer advocacy work, I was able to find a new sense of joy and fulfillment.
When young women are diagnosed with cancer, one of the first topics of conversation in conjunction with saving your life is protecting your fertility. Chemotherapy can have devastating effects on your fertility and thus egg retrieval and cryopreservation are encouraged for women who hope to have children following cancer. In our case, we were able to complete 1 cycle of hormone stimulation immediately following my mastectomy and we retrieved the 8 eggs that my body produced. Of those 8 eggs, only 3 were successfully fertilized and reached the embryo maturity stage where they could be frozen. We refer to these frozen embryos as our little Popsicle babies ready and waiting.
With my particular hormone positive cancer, the suggested treatment following chemotherapy and surgery is 5-10 years of hormone blocking therapy. Following the end of active treatment, I began a particularly successful combination of ovarian suppression (Lupron) and estrogen suppression (Femara), which results in medical menopause. Hot flashes, destroyed sex drive, no period, and joint pain were just a few of the new side effects I became accustomed to. Essentially I became a 60 year old women in a 29 year old body overnight. This meant, no chance of using our frozen embryos anytime soon.
My husband and I were forced to come to terms with my treatment plan and the continued delays on starting a family. “You’re so young,” they all say. “You have plenty of time”. Despite the logic of this thinking and my medical state of menopause, my biological clock is still going strong. No matter how hard I tried, the thoughts of motherhood came creeping back in and my desire took over. The vault was opened and everything I had locked away came streaming out. This prompted us to broach the subject of family planning again with my oncologist.
Most oncologists recommend at least 2 years of ovarian and/or estrogen suppression before taking a break for pregnancy (natural or IVF implantation). The fear is that the cancer will return or spread while you are taking a break. Cancer recurrence and metastasis (spreading of cancer cells to other parts of the body) are most common during the first 5 years following treatment, so oncologists are always nervous when their patients want to go off the recommended treatment prior to the 5 year mark. With cancer though, there are no guarantees. That fear of recurrence is always in the back of our minds no matter what decisions we make. In my case, we agreed that we would wait until Jan. 2018 (my 2 year mark) and then we would take a break to begin attempts at starting a family. Even with this decision, fear has been plaguing me. The fear constantly conflicts with my desire for a family.
One large concern about women with hormone receptive breast cancer who want to get pregnant after cancer, is that there is no data on the results, likelihood of recurrence, success rates of pregnancy, etc. Most decisions are made subjectively based on your oncologists experience and current data in “related” studies. So, when I heard that there is a new study that opened at my hospital as part of a larger US study called POSITIVE, specifically focused on for young women in this scenario, I immediately wanted to get involved.
The study focuses on women with ER (estrogen)/PR (progesterone) positive cancer on endocrine (hormone blocking) therapy for 18-30 months who are interested in taking a break to get pregnant. The study will monitor women at 3 month intervals for a 2 year break from hormone therapy and then will follow medical history for 10 years after the interruption and pregnancy (if successful).
I felt that participating in this study would bring me a sense of security due to the regular monitoring and checkpoints. While we will still be taking a risk, it will be a monitored risk. I was also excited by the knowledge of helping others with my participation in hopes that the results from this study can inform future practice for young women like me.
As my husband and I reviewed the study details and began to plan our meetings with my fertility specialist and oncologist to discuss timelines, it all became real. While we have both wanted children since we met 7 years ago, this time around considering family planning is different. This time, we are not afforded the carefree joy and excitement, which we held the summer before my cancer diagnosis. Those baby books and pregnancy literature we once bought with excitement and anticipation, are now gathering dust in our closet. To truly go down this path again and take action, means we have to open those doors and examine our wounds in the light of day.
Over the past week as my initial excitement over the study faded, the fear crept back in. As I allowed myself to yearn for motherhood again, the power of my emotions overcame me. I was forced to fully examine the stakes should a pregnancy be successful (a whole other set of fears). Behind all my decisions now hovers my fear of death, the uncertainty of my future and my lack of trust in those life events which I once took for granted.
Once the farthest thing from my mind, now death plays a role in my life every day. My mortality is familiar to me now, a looming presence. Every time, I see a sister in this community pass away, I am forced to face the possibility that it could be me. Over the past two years I have feared death not for myself, but for my husband and loving family I would leave them alone in suffering. Now, I am forced to examine those fears through the lens of parenthood. What if I die young and leave my husband alone with our future child? Was it responsible of us to start a family under these circumstances? These thoughts and fears raced through my mind all weekend. Amplified now as I mourn the loss of yet another woman in our community taken too soon.
While I don’t have answers to these questions, I share them to bring light to this struggle so many of us face. I think it helps to acknowledge these fears and share them in the light of day. Sharing these thoughts with my survivor sisters and with my husband has allowed me to feel less alone in my pain. I voiced these fears to my husband as we lay on the couch, tears streaming down my face. His whispers of love and understanding brought me comfort. I was no longer alone with these fears, a weight had been lifted. By hiding my fears, I had granted them power over me. “Having children is how you pass on the best parts of yourself”, he said to me as he held me tight. While we agreed the fears were worthy of our examination and acknowledgement, they should not have power over our decisions. Every day we have to make a conscious decision to not live in fear. Why should we deprive ourselves of the great joy of parenthood and the love I have overflowing ready to pass on to another human being? We decided that if I am forced to face my own mortality again, we will cross that bridge when we get there.
I share these feelings and fears because I know I am not alone. I am one of many fighting fear after coming face to face with my own mortality. People think that cancer is a specific event with a clear start and end. They are unaware of the fragments that remain. Unless we share this part of the battle, no one will know. By hiding in the shadows we hand over power to our fears. I acknowledge my thoughts and fear and by facing them head-on I can reclaim the power. Instead of living in fear, I choose to focus on living, focus on spreading joy and loving those around me. I want to make a mark, build a legacy and leave this world better a better place. The time I have is precious and I refuse to limit my opportunities for joy.
So, next time you are talking to a cancer survivor, show them a little more compassion, a little more kindness and a little more understanding, because no matter how good they appear on the outside, the internal battle continues. Those seemingly innocent questions you ask about babies and future plans break them inside and only add to their pain. Instead acknowledge their inner struggles and the losses they bare. Offer your love, your friendship and celebrate every moment with them on this road we call life beyond cancer.
A special thank you to my amazing friend and fellow survivor Melissa. She is the owner of Hope 25 and Melissa & Isai Photography. Not only did her style us in her amazing inspirational tees (which I wear constantly), but she also took all these amazing photos. She is pictured in the middle below during the survivor shoot we completed in California last month. It was an unforgettable experience. You will be seeing many more photos from the shoot soon.