By Doug Wendt
The cancer journey is always overwhelming. No human can come away from the experience unscathed. You begin with a symptom here, a sign there, or maybe something appears on a routine checkup or in imaging. Suddenly, the discussion shifts without warning, and the next thing you know you’re in the fight for your life and everything else has been turned upside down. As the brave and noble author Amy Krouse Rosenthal said in her amazing New York Times column about life with ovarian cancer, “No wonder the word cancer and cancel look so similar.”
One of the essential challenges of the journey is not to let cancer become the great canceler, at least as best you can. In our case, the cancer diagnosis came as a complete surprise. My wife Alice went in for a relatively routine ovarian cyst removal surgery, and even the surgical team (including a veteran gynecological oncology surgeon) was confident that the cyst did not show signs of being malignant. And then they opened up, as is often the case, and found themselves the victims of a cruel and deceitful foe whose behavior had fooled us all.
My wife and I ran a business together, and because of this and for a host of other reasons, we kept her cancer diagnosis very quiet, only involving a very small circle of close friends and family. We often debated this decision and certainly it is different for each person, but for us one advantage is that it allowed her to carry on her day-to-day life, and not let cancer become cancel. Clients were still clients, friends were still friends, and life was still life. Alice handled most of her chemotherapy regimen flawlessly, with the one exception being doxorubicin, long known as the ‘red devil’ and for good reason. After two years of living with the cancer (one year during her diagnosis and first line treatment, and one year for what was a case of platinum-resistant, if not persistent, recurrent ovarian cancer), she succumbed to metastatic brain tumors that represented the cancer’s ultimate step.
Even on the very day she was admitted to the emergency room for treatment of what imaging discovered were multiple major cranial lesions (any one of which could have caused a stroke), Alice was in the office making her morning tea, doing work, scheduling meetings and sending emails to clients. Her calendar and task list that day were completely routine — perhaps boring, even. But that meant life was going on, right to the end.
Once Alice’s situation entered an emergency state from which she would not recover, we were in a different place entirely and I knew that I needed support in ways I had not anticipated or planned for. I texted a few very close friends who ended up staying with me all day and all night, literally for weeks, holding vigil with me in what became a stream-of-consciousness conversation about the life I now found myself living.
Realizing that I needed more support, one of my 24/7 texting buddies urged me to take the step of setting up an online group to invite others into my struggle. I was hesitant for a host of reasons but finally broke down and did it. Alice’s “A Team” (so named in homage to the kitschy 80’s TV show where the heroes constantly face insanely dangerous battles with the ‘bad guys’ and always emerge without so much as a scratch), was born as a private Facebook group with less than ten members. As Alice’s situation become more complex, people suggested other potential members — friends who were nurses, friends of friends who had been through similar experiences, etc. This led to invaluable advice and support as we worked through surgery, post-surgery, recovery and then, very quickly, hospice care and suddenly preparing for Alice’s passing.
The help that I was offered became utterly invaluable as friends came over to help, made essential suggestions or even just empathized and shared their own experiences. It seemed that, in the context of this private and sacred place, the more openly I shared, the more others could relate, connect and offer support.
I thought that the day of Alice’s death would mean the end of the A Team. After all, it had started specifically as place for us to support Alice’s journey and do all we could to help her overcome this cancer which had so viciously entered her life.
However, I was wrong. As soon as she passed and we had to confront the reality of dealing with death and all of the challenges that come with it, the A Team became even stronger. Long-ago friends of Alice’s from high school or college reached out and asked to join. We ended up putting together Alice’s Remembrance & Celebration of Life entirely thanks to volunteers who stepped up from the A Team. People offered photos, stories and vignettes from Alice’s life to share. The results were transformative in every way, and allowed Abigail (our daughter) and I to truly feel enveloped in love during our loss.
Alice died in April of this year, and the group has continued to stay alive and active. I’ve used the A Team as a safe place to journal about the experience of losing Alice, and the memories that made our lives so special for more than a quarter-century together. In addition, we’ve found out that far more women have faced gynecological health crises than we ever could have imagined, and all were especially interested in sharing the message of ovarian cancer awareness.
The other thing we did is share throughout this process about The Clearity Foundation. During Alice’s treatment, she had expressed a desire to fly to San Diego and meet the team who had been working so hard to save her life and were making such a difference in our journey. Although that trip did not take place during her life, I was honored to come out and meet the team face-to-face to share handshakes, hugs and tears. The A Team members embraced this experience and many have asked how they can help us to support The Clearity Foundation even more.
During Ovarian Cancer Awareness Month, we asked for financial support for the first time. We specifically focused on seeking small donations from lots of people to emphasize participation and make the ‘ask’ accessible to everyone. In a matter of weeks, we raised thousands for Clearity, and it’s just the beginning. And all of this from a group of people that includes many individuals I’ve never even met, and yet their love for my wife, combined with my honesty about our journey, have generated a level of loyalty that I could never have imagined. As one member of the group, who herself is a full-time oncology nurse, said to the A Team in a post: “All the awareness ribbons out there have a real person attached to them.”
There is certainly a heavy responsibility in maintaining the A Team. How often do we share? What messages should we focus on? How ‘raw’ should we get with our posts and updates? Do we just focus on the happy moments or do we ‘get real’ with every aspect of what this journey has been about? How do we take love for Alice and use it tactfully and tastefully to generate financial and personal support for other women facing the same journey? These are all questions we think about, but they’re ones I am honored to work through. The A Team has literally given us a living memorial to the love of my life, in a way that I hope over the long term will help other women as well.
Of course, I am not the patient. Alice lived with this disease, I did not. She had to face the surgery and the pain, the treatments and the uncertainty. She had to push through and courageously drive forward with an unbending will to live, all the while working through the realities of mortality in her own mind and heart. She and other women who have lived through this journey are the true heroes. The least we can do as spouses and surviving family is to tell that story.
We read novels and go to the movie theater to learn about fictional superheroes, but I married one. When the chips were down, she put on her cape and flew with all her might. I am honored that others have agreed with my view that Alice was a superhero and that they care enough to try to help other women who are having to show their superhero side as well. That’s the true soul of the A Team, it’s also the heartbeat behind the work of The Clearity Foundation. These are the bravest women, and we’re here to tell their heroic stories while we also try to change the course of the hero’s journey that they are all on for the future.