Infertility & Cancer

 

Cancer Isn’t Fair

Tarah D. Warren, MSW

Tenaciously Teal, Inc

 

Foreword

In the summer of 2016, I wrote an article about Infertility & Cancer. The article was published in The John Hopkins University’ Narrative Inquiry in Bioethics, but I never told anyone. In fact I don’t even know what I did with the complimentary copy they sent me. I never opened it to see the published writing or take a moment to be grateful for the accomplishment, however, I did take advantage of the Starbucks gift card that came as a “Thank You”. What I had written was too painful and personal to share or truly face at the time. When the editors reached out to me I agreed to write the article in order to help others, but it impacted me in a greater way than I could’ve imagined.

I never thought I’d share it, but as another Mother’s Day approaches I feel it is necessary to start acknowledging the awkwardness that comes with being a 35 yro without the choice of having children. I need to face that it isn’t fair, but there are a lot of things in life that aren’t fair.  The reason I am choosing to share my story now is because there are a lot of women, like me, who are struggling. It may be feelings of grief correlated to a holiday recognizing all the amazing moms in our life or it may be a more personal struggle.

Unfortunately in this life we will always face something. We all have something.  We are all worried, stressed, hurting and as we walk the road getting to where we want to be it is not always pretty and definitely not easy. In fact, the road is filled with valleys, damage, and brokenness, but it is also filled with peaks, high points, and silver linings. The go to verse in my heart for when life gets hard is, “I have told you so you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33

As I believed when I wrote this article for John Hopkins 3 years ago, I still believe that recognizing our blessings is how we get through the hard times. To those grieving this Mother’s Day from loss, infertility, or death, my heart is with you. I am praying God will pierce the darkness with His love and light and help us all be grateful for the many blessings along the difficult path of life. Take heart, He has overcome the world.

Folowing is article written in 2016: 2 years after finishing chemotherapy

 

Abstract

Tarah was diagnosed with Stage IV Ovarian Cancer in December of 2012 and received 16 months of chemotherapy. Tarah was misdiagnosed for years, which ultimately led to the advancement of her cancer and subsequently having to endure a full hysterectomy in 2012. Although treated unfairly, Tarah used her experience to help others going through cancer treatment. She founded Tenaciously Teal (T. Teal), an Oklahoma-based non-profit focused on the support of cancer fighters and their families. Teal is the color for Ovarian Cancer Awareness, and fighting cancer takes a great deal of tenacity and strength.  During treatment, Tarah noticed many cancer fighters who did not have a network of support like she did. In response to what she saw, Tarah began distributing Cancer Care Packs during each of her treatments. The positive feedback from cancer fighters and love that was spread eventually led to the founding of T. Teal (a 501c3 charity).  Today, T. Teal serves treatment centers across Oklahoma with monthly care pack deliveries. In addition, to spreading love and hope through Cancer Care Packs the organization also offers Brave Shave & Empowerment Shoots for women, and distributes financial assistance to cancer fighters in need.

Cancer is Unfair

Cancer most definitely isn’t fair, and those who have been through it understand asking “why?” is a slippery slope into a mire of self-pity. I have fallen down the slope a time or two and sometimes it stems from a choice taken from me. A choice, which slipped away when I was just twenty-nine years of age. It is a milestone in life, an innate gift, and one I witnessed many take for granted in my 10 years of service with Oklahoma Child Welfare. What is the choice you ask? The ability to have children, the capability of the greatest miracle, life.

 Even though it is best not to ask “why” there are still times I think to myself why me? Most often those moments happen with random social media posts, or when I’m caught in a conversation where everyone around is talking about their kids, and I don’t have story Or when you visit your best friends and both are pregnant at the same time. Or when your sister just mentions, “I would have loved to meet your children”, and you unexpectedly lose it. I don’t have children, which is an awkward and uncomfortable realization for more than just my husband and I. However, the hardest part is it should have been a choice, which is the part that feels unfair and honestly makes me mad.

Cancer unfairly took the choice away from me after I was diagnosed with Stage IV Ovarian Cancer in December of 2012. Many of you know that stage IV is on the dire side of the cancer staging scale. It means there is little hope, but most importantly that cancer cells have traveled outside of its origin and embedded itself in other parts of the body, and boy did it!  Likely the most unfair part of my story is not that cancer led to infertility, but that my cancer diagnosis should’ve been caught much sooner when it was in an earlier stage.

A Journey to Stage IV Ovarian Cancer

After I married my husband, Benjamin, in October of 2008, I went back to my family doctor, and reiterated concerns about pain I had experienced since I was a teenager. My doctor made a referral for me to see a very reputable OBGYN, Dr. D, and I was pleasantly surprised to hear it was the same doctor who delivered his children (in my head believing he was good enough to be a doctor’s doctor).

I appreciated the referral and felt hopeful that we could find some answers to relieve the chronic pain, and answer the question, “why”.  I met with the highly recommended doctor, and he told me there’s really no way to know what is going on around a women’s uterus and ovaries without having an exploratory surgery. That information is basically true since I had numerous ultrasounds, trans-vaginal ultrasounds, and a CT which didn’t show anything. Dr. D was very concerned with the pain I was having just from lightly pressing down, and we immediately scheduled surgery in January 2009.

 He gave me a choice of any hospital in the area, and came as a board-certified doctor with several accreditations and experience.  The surgery was outpatient, and I came out with the two tiniest incisions. Dr. D determined I had an infection, but never completed a biopsy despite observing a black cyst on my right ovary (The same ovary we now know the cancer originated in). On my follow up appointment I had a lot of question, but he walked in the room, and literally said “well you’re never having kids”.  See, I think he judged me because he believed I had an infection.

With his extremely lacking bedside manner and harsh statement I really heard nothing else. I was still in a great deal of pain, and my just married, shell of a woman, left the office with a wounded heart and more antibiotics. The thing is my pain continued to increase and nothing got better. I found a NEW OBGYN right away who I really liked. She was a mother of five with one on the way and she patiently interpreted the surgical notes, focusing on fertility, after I told her how the doctor treated me.  She told me my insides where messed up pretty bad, and I had “clubbing” in my tubes that likely would prevent children. I told her I was still having pain, but she was adamant that I should not have another surgery until Benjamin and I decided if we would “try” for kids, because another surgery could damage everything. I pleaded with her that I was still in a lot of pain though, but she was adamant on watching and waiting.

A Diagnosis

Fast forward to four years later, I was 29 years old, and just had a big disappointment at work. After trying for several promotions and being turned down I decided that if I couldn’t get my career right I needed to get my health right, something we undervalue in the busy lives we lead.  Heartbreak was exactly what I needed to propel me to advocate for myself and seek answers about my health. I researched options and received good recommendations on a doctor who specialized in pre-cancerous and high risk conditions. When my husband Benjamin and I met with him in August 2012, I laid down on the table and he immediately felt a mass on my ovary within seconds…. and he was concerned!

 He did another ultrasound to see the size and makeup of the mass, and we made plans to have surgery and remove a portion of my right ovary. When I woke up from that surgery my life had changed forever. During the procedure the doctor found more than he bargained for. The mass was cancerous, and it had spread to my uterus, tubes, and now we know metastasized to other organs. As I came out of surgery I saw my husband sitting by my bedside and his eyes were filled with tears. He grabbed my hand, but couldn’t talk. My mom grabbed his shoulder and said, “Do you want me to tell her?”, and within seconds I felt the heaviness of the situation. My mom told me the doctor determined in surgery he needed to remove my entire right ovary, my fallopian tubes and 75 % of my left ovary, because of an aggressive tumor. My informed consent was questioned, but the doctor did what he needed to do, which I believe helped save my life. Still, in a moment life seemed unfair and I realized my chance at naturally conceiving children was gone.  

I was immediately referred to a Gynecologic Oncologist, and underwent a complete hysterectomy and debulking surgery to eliminate as much cancer as possible. I completed 18 rounds of IV and intraperitoneal chemotherapy, and then 10 months of maintenance Avasitn.  For today I am cancer free; I have No Evidence of Disease, but I still sometimes slip and wonder to self-pity and “why me?”  as I process all of the treatment and changes to my body after an extensive cancer fight.

Light in the Darkness

I obviously wish things could have been different for me. I wish my primary care physician would have researched the best referral option instead of involving my health in the “good ole boy” system of referring to friends instead of the right specialist. I wish Dr. D, who misdiagnosed me, would have been better informed and not judgmental.  I also wish that as a doctor he would have held up the moral integrity of his profession; to strive for diligence and compassion with all patients.

Although it seems unfair, I try to remember that we all make mistakes, but I often think how different my life would have been, and as a human sometimes wonder, “Why”?. I believe you fight back and overcome the “why” in life by being thankful, and choosing to find the silver linings even when life is unfair.

 My husband has helped me through one of the hardest things in the world, even though his life was extremely unfair from an early age. He suddenly lost his dad to Melanoma when he was 4 years old. His father’s Melanoma had metastasized to the brain when it was found and he didn’t have long. So when I was diagnosed with advanced cancer, he faced his biggest fear and most tempting “Why me?”. 

A silver lining to a cancer diagnosis is the value you place on love; loving those around you and those you meet in need of love. Ultimately a major silver lining I’ve found with infertility and cancer is I can spend more time with someone I love. In 2009, my husband and I made a promise to each other one night on Lake Texoma. I was crying because it was just a year after my last meeting with Dr. D and my husband comforted me, “telling me it would be ok”. We made a promise to travel, if we couldn’t have children; Silver Lining it’s much easier in a world without diapers, college funds, and adorable clothing.

 We’ve kept our promise made on the lake that fateful evening to travel often. Love can make the unfairness of life bearable and as they say “love conquers all”, even cancer. As we strive to overcome the  unfairness that life presents I hope we can all make a conscious choice to be thankful for the blessings amidst the trials in life.

Link to article: https://muse.jhu.edu/article/673332