My Story

My own ordeal started on a beautiful, blue-sky September day. My daughter and I were headed to a neighborhood salon for manicures. When my cell phone rang, I was surprised to see my gynecologist’s name on the display. Having been in the week before for a regular check-up, I assumed it was someone in the office calling about a billing issue and answered as we continued walking. But, I stopped short when I heard my doctor say I had flunked my Pap smear––it had detected “atypical glandular cells.” Probably it was nothing, she said, but I needed to come back in for more tests. She was at the hospital in the middle of a delivery so signed off quickly with assurances and instructions to call the office.

It went by so fast, I didn’t quite know what to make of her call. My daughter and I were on a mission with a deadline––we were going out in two hours and our nails were not yet red—so I carried on without giving it much thought. Moments later, sitting in the salon, I called to schedule the follow-up procedures, but the office had already closed for the day.

There are times when it might be better not to be such an insatiable Internet researcher. I had just a few minutes to use my phone before succumbing to the manicurist, and quickly learned that “atypical glandular cells” were the warning signs for a particular type of uterine carcinoma that had grim survival statistics. I went from unconcerned to terrorized in an instant. Cancer already had a grip on my emotions, and it would be a long weekend of grappling with the possibility that I had a life-threatening disease.

Isolated and Alone

“Everything is going to be fine,” my husband assured me, feeding me the same line I had taught him to say years before when he tried to solve a problem that needed only solace. But this problem needed more than a comforting arm around the shoulder. What if I did have cancer? At 57 years old, I was too young to think about sickness and death, but it seemed unlikely that the Pap smear was a false positive. I wanted to talk to someone who would understand my fears, but my best friend, the one who would have known exactly what to say to acknowledge the intensity of my feelings and be with me in the moment of foreboding, had passed away only nine months earlier from the very disease that threatened me now. I felt isolated and alone.

The endometrial biopsy the following week was excruciating, but not as bad as the wait for results. It was a week of suppressed terror––putting up a brave front and a false smile while inwardly on the verge of tears or frozen with panic. I was home alone when my doctor called with the news. “I am very sorry to tell you this, Cynthia,” she said, “but the biopsy results confirm that you have cancer.” The news hit with the force of tornado, depriving me of air and upending my life. Instantly, my head ached and my heart raced. I had cancer. And not just any old cancer, but uterine papillary serous carcinoma (UPSC), an aggressive, fast-growth cancer. The nightmare I had kept under wraps for two weeks was real.

I was in shock, but needed to act quickly. I needed scans. I needed to find a surgeon and schedule pre-op testing. Most of all, I needed my husband, who at that moment had a mouth full of cotton in the dentist’s chair. It all happened so fast, I barely had a chance to think, let alone cry. Phone calls and emails, recommendations and confirmations. By the end of the day, I had a morning appointment with the radiology team for scans of my entire torso, and appointments with two surgeon candidates. The scans would give us further insight into the depth and breadth of my cancer, but not until a surgeon had probed my inner organs and removed many of them would we know the stage of my disease, a prognosis, and a treatment plan––more waiting and uncertainty, and more dread.

Cancer Isn’t Always a Death Sentence

In the United States alone, nearly 600,000 people a year die from cancer[1]. For centuries, the disease has been synonymous with death. A diagnosis was accompanied by a timeline, usually short, and encouragement to get one’s affairs in order. But improvements in screening and detection mean that doctors catch many cancers in earlier stages, when they are more treatable. At the same time, breakthroughs in treatments are helping patients live longer with the disease and return to health.

But that death sentence is still what we hear when we learn we have cancer. Like the roar of an approaching train, overpowering the words of the speaker beside us, the diagnosis instantly overwhelms, blocking out information and insights that might help us understand how to deal with the disease and move forward with our lives.

I was lucky, destined to join the ranks of the survivors. Although UPSC carries a survival rate of less than 40 percent[2], my cancer was caught early: after surgery, and another anxious week waiting for the pathology report, my doctor was able to give me the good news that it was stage one, consisting of a small, single tumor, confined to the uterus and barely dug in. This significantly increased my odds. It helped, too, that I was in New York with a top-notch care team, expert in my type of cancer. Also, I was healthy going into the ordeal and had a loving support network, all of which eased the process. Surgery and six chemo treatments later, I was cancer free. Three years after the diagnosis, the terror is as faded as my surgical scar.

Emotional Turmoil

But the process from diagnosis to recovery was far from smooth and easy. While my doctors were clear about the physical effects of surgery and treatment, we had few conversations about the emotional toll the process would take. And although my family was prepared to support me through the helplessness of surgical recovery, the nausea of chemotherapy, and the cancer-induced malaise, none of us anticipated the emotional swings, the anxiety, or the cognitive impairment that accompanied the physical trials. When I dissolved into tears at my fate on the fourth day after every chemo treatment, we didn’t know that withdrawal from the steroids pumped into me as part of treatment could lead to an emotional crash. Or that the despair I felt so acutely one day would be gone the next. I anticipated the loss of my hair as chemo progressed, but wasn’t prepared for the loss of my identity as I shifted from high-functioning executive to obvious “cancer patient,” with bald eyes and a blank stare. I was no longer on top of my game physically, mentally, or emotionally.

While I often felt adrift in my emotional turmoil, as the months passed, I was surprised to learn that I was not alone. Conversations with friends and colleagues—even with acquaintances at the gym as I struggled to regain some strength—revealed that many cancer patients experienced the same emotional volatility, the same anxiety around test time, the same relief mixed with fear when cleared, and the same urge to make something good of it when cancer was finally history. And the more I spoke with patients and survivors, the more clearly I saw the patterns in how we respond to the ordeal.


[1]American Cancer Society, Global Cancer Facts and Figures,3rd edition: https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/global-cancer-facts-and-figures/global-cancer-facts-and-figures-3rd-edition.pdf
[2]Patterns of failure after the multimodality treatment of uterine papillary serous carcinoma, Sood, Brij M. et al., International Journal of Radiation Oncology • Biology • Physics, Volume 57, Issue 1 , 208 – 216

5 thoughts on “My Story”

  1. Hi, Cynthia,
    So sorry to hear about your trauma.
    Glad you can put your experience and expertise
    so wisely into helping others.
    Best,
    Trish

  2. Thanks for sharing your story and letting me (and many others) share as well. We are THRIVERS … moving forward, teaching as we go, reaching out to others, etc.
    Your site looks wonderful. I”ll drive some traffic to it.

    ann

  3. Cynthia, I was astonished to learn of your cancer. To me, you had always been the epitome of energy and strength but also invulnerable. It is your energy and strength that sustained you through this awful trial, obviously. I am so happy that the outcome is what it is. And, your project is so needed. What a wonderful thing for you to do. Ironically, only two hours before your email arrived, I had an email from my gynecologist asking me to participate in a cancer study. My mother had breast cancer and was not a survivor. Of course, I will participate in that study, which I hope will provide knowledge that will help with both treatments and prevention. Well, congratulations to you on having got through a very painful experience and all of my wishes for continued good health and a very successful project! Peggy

  4. Thank you for your work with the Big Ordeal! Until you have been through the wormhole of hearing you have cancer, and are on the other side dealing with everything, it isn’t possible for people to understand the space we inhabit. Partners, spouses, friends and family members can be enormously caring and concerned but oftentimes clueless, which is why all of us who have been through the wormhole need to connect with one another.

    I led an all volunteer statewide prostate cancer group in Maine for a decade. One of my early initiatives was focusing on the emotional journey men encounter with prostate cancer. We had been doing a reasonably good job addressing medical journey issues but had been ignoring what is actually the most important stuff. Big Ordeal’s focus is terrific.

    We secured two grants and I spent over three years trying to develop something that would be useful. At multiple points during the early effort I was pretty sure I had a disaster on my hands because it seemed impossible to produce insights that would be useful to a large number of men, especially in Maine’s Paul Bunyan territory. What I did find that seems to resonate is there are clear patterns of success when dealing with a cancer and clear patterns of failure. Guys who are resilient, positive in realistic ways, working towards the best case scenario, taking ownership and being proactive are going to have excellent outcomes. This is true even if the disease proves fatal. Guys who let adversity overcome them, who think they are victims, who are passive and not taking ownership and not managing their situation invariably have vastly shorter runways and a poor quality of life. Cancer is a place where self-fulfilling prophecies really work, if you think you can beat something or at least manage it, you will. If you are down and out and defeated your forecast will be absolutely correct about how bad things can be.

    You have a great start with Big Ordeal. Please try to do more to include and serve men who are dealing with cancer. It is a much tougher audience to reach and assist but they critically need you and your community more than they are likely to ever admit.

    At 16 I watched my paternal grandfather die an excruciating death from prostate cancer. I was a pall bearer at his funeral when I was 17. I tried to help my father who also died a painful death from prostate cancer. I was diagnosed with prostate cancer and subsequently with colon cancer. I have tried to use this lived experience to benefit others. None of what we do together will likely change overall survival rates, but we can make a huge impact with each other on the road travelled together.

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