Caroline

Age at diagnosis: 34

Diagnosis: Endocervical adenocarcinoma

Stage of cancer: No stage specified

How my story begins: My early 30s were packed with life's milestones, including selling a home, buying a home and getting married to the love of my life, Zach. We had met through work and became very close friends. It certainly did not take long before we admitted that we were head-over-heels for one another and we began progressing through the exciting decisions of moving in together. May of 2010 found us finally settling in the home in which we planned to start our family.

About 6 months later, I went in for my annual exam which resulted in a call back from my physician indicating that HPV was present. This was no surprise to me as I had been diagnosed with HPV years prior and had gone through close monitoring following a colposcopy. Only this time there appeared to be a few “glandular cells” present, which caused a bit of concern. As a result, my family doctor referred me to an ObGyn for a biopsy. I was nervous and the complete lack of bedside manner from the ObGyn performing the biopsy only hastened my anxiety. I was so very grateful when the results of the biopsy indicated that there was no concern. My next step was simply a follow-up pap in 6 months with Dr. Personality…and I could handle that. Six months came and went, and the follow-up Pap indicated zero issues.

Zach and I celebrated our marriage in September 2011 and had a beautiful ceremony and reception with our family and friends. We were on our way on this great journey of life together and had started planning our honeymoon for the following spring, thus allowing us a bit of downtime to rest and save some cash between the wedding and our Hawaiian vacation.

I closed out the year with an annual visit with my primary physician. Though I had just done a pap six months prior with the ObGyn, she insisted that as my primary, she would feel much more comfortable doing one again on her own. Again, relief topped off the holiday season as she called saying that although HPV was present, there was nothing of note to report.

Just after the New Year, we learned that Zach’s mother was diagnosed with an aggressive breast cancer. Though she is healthy as a horse today, at the time this shook us to the core. We buried ourselves in family time and funneled our energies to supporting his parents as we all walked through this scary experience together.

Just weeks before we departed on our Hawaiian honeymoon, I received a call out of the blue from my primary physician. She sounded worried, but calmly explained that my pap results from a few months back had been pulled for a random quality check at the State Lab of Hygiene, and it appeared that there were a few glandular cells present once again. Her advice to me was to schedule a biopsy as soon as I could.

My biopsy was scheduled for the morning on which we were hopping a bus to O’Hare to begin our honeymoon adventure. The biopsy performed was more invasive than the first one I had the previous year, but I was floating on my excitement for our trip as newlyweds. So, when I asked if these were the same cells that were present the year earlier and whether I ought to be concerned about this being serious, I happily ignored the pit in my stomach as they reassured me that they were confident that nothing would be found. This was really just a safety precaution.

A week or so later, while waking up slowly on a sunny Maui morning, I received a call from the hospital indicating that they wanted to take yet another “safety precaution” and perform an even more invasive biopsy – a conization – upon our return from Hawaii. This would be the first time I had ever been under general anesthesia in my life, but I was able to snuggle in at home for a few days afterward and enjoy the warmth of our fireplace while missing a couple days of work in a place I was completely burned out on being professionally.

Given all the reassurance we had received about how unlikely it was for this biopsy to result in anything concerning, I received the call from the physician expressing the importance of me "popping by" that very afternoon as she wanted to talk with me prior to her leaving for vacation. I was shaken, my heart sank, and I insisted that they explain to me via phone what was going on. I had been attending an all-day retreat for work, so I quietly excused myself from the office and curled into a sobbing ball in an alcove of the building as I cried over the news I was receiving. "You have invasive adenocarcinoma of the cervix and we feel the odds are very good that the cancer has advanced into your uterus..."

How I felt after diagnosis: I have no idea what was said next or what I did. I only know that one of my coworkers found me crying and offered me a hug. Completely numb, I walked to my car, emotionless, as I fumbled around with my phone trying to get up the nerve to call my husband.

A week later, my husband and sister accompanied me to the ObGyn's office where she explained the pathology and gave me referral information for my oncologist. I was set to meet him in two weeks. Meanwhile, the ObGyn suggested that I use the time to "say goodbye to that uterus” of mine. I watched my little sister shed silent tears, which fell and stained the blouse that was covering her swelling, pregnant belly. I had just learned that we would not have children. Shit.

Telling my family and friends: We waited two weeks between the appointment where I received my diagnosis and the initial appointment with my oncologist. Like, I now HAD an oncologist. What? For real? Zach and I tried comforting each other as best we could, while having to make numerous calls to loop in family and friends – telling and retelling the story, feeling mostly numb and aimless. In many cases, we found ourselves offering our friends and family support and promising them that it would be okay, which was quite the opposite of what I anticipated.

My treatment: When the time came, we went to the cancer center to meet my new doctor and to learn more about what we could expect moving forward. After a brief exam, we were escorted to a small consultation room, where my oncologist walked through our next steps. He asked if we had wanted to have a family – my throat closed, and tears started flowing. I shook my head “yes” and Zach squeezed my hand in efforts to hold in overwhelming emotion. What he said next was an unexpected ray of hope, “Well, there might be something we can do.” He explained the possibility of a radical trachelectomy, which is a surgery that removes the cervix and nearby tissue but can allow for natural conception and the ability to carry a pregnancy with close monitoring. This option was entirely dependent on my margins. The surgery was scheduled for 5 weeks later. We trudged through those weeks trying to find peace in each other and researching gestational carriers or surrogates, in the likely scenario that my margins resulted in a radical hysterectomy.

The day of surgery came, and we made the trek to the hospital in the wee hours of the morning. We had tried to prepare for this day, hoping to find strength to be calm and embrace whatever result we were given. I learned, however, that in this instance no amount of (forced) preparation would really allow me to arrive on that day feeling at peace. Valium helped though. My chances were 50/50 of waking with either having had a radical hysterectomy or the radical trachelectomy, the latter of which would allow us to try for having biological children. I was rolled away from my Love, teary-eyed and scared, knowing that when I awoke, we’d be getting used to some sort of new normal.

A fun fact I forgot to mention earlier is that at the time this occurred, my surgeon was one of 7 or so people on our great planet Earth who was trained in this surgical approach. Rumor has it that he even learned French in order to learn this technique through training in Quebec. People would quit their jobs and drive across the country to receive this kind of sub-specialty care…and, somehow, we were exponentially blessed to have this available to me in the city I call home.

The surgery went on for 9 hours. Zach and my family were huddled in the surgical waiting area for 7 ½ hours before they received word that I would be waking up with my uterus intact! They had removed 29 lymph nodes for testing, and all were healthy. This, coupled with my acceptable margins, was enough to allow me to wake to the possibility of having the children we had dreamed of naturally. This priceless gift was accompanied by the “all clear” for no further treatment. I was officially on my way to heal from this crazy experience with a 3% chance of recurrence.

Zach and I welcomed a sweet and healthy little girl in August 2013, followed by another precious little girl in February 2016. Given my “advanced gestational age” and the high-risk nature of my pregnancies, we decided to count our many blessings and move forward as a family of four. Per usual, time passed and my every 3-month oncology appointments reduced to every 6-months over the 5-year span. I became active in several gynecology oncology-related fundraising activities and worked on healing myself and raising my young family, always with a little twinge of fear that it would come back…even though the chances of that happening were unheard of.

At the last appointment of my 5 years before “graduating” to annual check-ups, I shared concern with my care team about a few vague symptoms we had been monitoring since our second daughter had been born – all things which could be easily explained away due to my age and having carried two full-term pregnancies. Of course, the worry I was experiencing was normal, but even given the extremely low probability of any recurrence, my oncologist decided to perform a biopsy to put my fears to rest once and for all. Two days later, we were dressed to the nines for the Sparkle of Hope Gala for gynecology-oncology research fundraising, where I toasted my 5-year survivorship with the twenty friends and family members who accompanied me to this annual special event. I was so excited to close this chapter of my life.

I got “the call” two-days later. Sadly, the biopsy that was performed for the sole purpose of putting our worries to rest showed that my cancer had returned. I was, unbelievably, one of the 3% who populated the damn statistic. As soon as I saw the clinic number appear on my phone, my heart sank. It was like a piece of me had already known this…for a long time. Nevertheless, I cried, I swore and I was shaken and lightheaded. I worked just a few floors above the cancer center I frequented, so I was a 30-second elevator ride away from my teary-eyed PA, who explained the next steps with all the composure she could muster. I called my husband, shut down my computer, told my boss and drove home. Why would this happen? What about my girls? What will Zach do if I don’t make it? Though I tried not to let my mind dwell on the worst, the confidence I had built regarding survival was gone.

This time around, I had a hysterectomy and lymph node dissection, followed by 6 weeks of radiation. We made it through the few months of “ick” from a logistics perspective because my husband had lost his job (the cherry on top), so getting the girls to and from school and ensuring they were well-fed, clean and tucked in each night was manageable. Their little smiles were certainly a HUGE part of my treatment from a mental health perspective. We never used the word “cancer” around them, nor did we tell them that I was sick. Conveniently, the hospital stay was enough visual for them to feel that my time on the couch over the weeks that followed appeared to be a non-threatening process of “getting better” from whatever made me sleep over in the hospital in the first place.

How I felt after treatment: Radiation was rough. I worked every day until noon and then moseyed over to radiation oncology to nestle into my body mold for treatment. It took quite a bit of time to feel as if my energy levels were back to normal...like months. I was pretty zapped and my body was tired. I never knew that kind of exhaustion was possible…nor did I particularly enjoy the sun-burned ass crack and extreme nausea; however, the end seems to have certainly justified the means.

What was most difficult for me: Struggling with shame, fear and other related emotional wounds has been the most difficult aspect for me. Logically, I know I did not deserve this and that I am a good person (and all of the typical things people remind me of when I am feeling down), but there has been a significant impact on my self-confidence and my anxiety has increased overall.

What I did to help myself: I leaned on my creative abilities throughout my treatment – art therapy. In fact, all sorts of therapy helped! Talking to family, friends and professionals was good for my soul…and likely theirs too. Oh…and rest! I allowed myself all the sleep that I wanted. Well, that is as much as my little people would allow me to have. Finally, prior to my 2nd diagnosis, I had been practicing meditation…a skill that proved to be such a gift as I worked on finding calm when my mind wouldn’t stop spinning.

My life after cancer: My body has been forever changed from my treatment. I mean, obviously I am missing some organs and tissue, but in addition to that we are in the midst of a lengthy regimen of pelvic floor physical therapy, with the hope that someday my husband and I can experience the intimacy that we so miss. I am very hopeful that we’ll get there. I am now 40 years old and postmenopausal, which has been a bucket o’ fun all its own, but I am so happy we chose the treatment path we did. I know in my heart that we did everything possible to make sure that I would be here to be the mother my girls deserve, the partner my husband intended on spending his years with, and the woman I dream of becoming.

Where I am today: My husband and I will be celebrating our 8th wedding anniversary this year and we are hoping that the only excitement we’ll have in the foreseeable future involves family vacations, laughing and showing our kids the simple joys of life. I am just one year out of treatment for round two of this crappy disease. Zach and our girls are my reason for getting up and carrying on every day.

I am now CANCER-FREE and my oncologist believes that I have an 85% likelihood of putting cervical cancer behind me for good. I wish I could say that this impressively high number left me feeling confident that everything is going to be okay. I mean, the first time my prognosis was 97% of no recurrence…and 85% is LESS than that, but lightening can’t strike twice, right? Or at least not a third time. :)

What I want other women to know: You are not alone. Advocating for yourself and trusting your gut are essential.

How I will try to help others: I thought my cancer story was over the night we toasted to my five-year survivorship, but since it is clearly something that will impact more of my life than anticipated, I have become inspired to continue my work with fundraising and outreach for this cause. I am hoping to complete a certificate in grief counseling sometime in the next two years and feel that I am able to offer others who are going through this (and other female cancers) the opportunity to relate to another woman who has been in their shoes.