When Taylor’s wife was diagnosed with Stage IV cancer, they’d just moved to a new place and their daughter was barely 1. Here are his tips for husbands hoping to keep it together when you learn your wife has cancer
As part of Breast Cancer Awareness Month we wanted to provide an alternative perspective from all of the amazing women who have bravely shared their stories. Today we hear from a husband whose wife fought a terrifying battle with Stage IV Melanoma when their daughter had just turned 1. From confronting the worst questions (“What happens if I die and our daughter doesn’t remember me?”) to seeking out support from cancer survivors and remembering to take care of yourself, Taylor shares his own experience and tips for spouses looking to support a partner with cancer.
A few weeks ago, my wife asked me to go see a movie. The catch, though, was that we had to go separately. My wife, Melinda, would go see the late afternoon, post-work screening at five, and I would pick up our four-year-old daughter from school. Then, I’d perform a parking lot handoff just in time for the next screening and go see the movie myself.
This perfectly-orchestrated maneuver was not to see some Hollywood blockbuster. But it was a movie symbolic of our last three years together. Breakthrough was all about the life and work of Dr. James Allison, an immunologist and researcher who won the Nobel Prize in 2018 for his pioneering work on cancer treatments.
To us, Dr. Allison has become a hero. And, for the last evening that this documentary was playing in Denver, Colorado, we had the time to quietly sit in reflection as his story was told, quietly closing a chapter of darkness that had clouded our lives for the last three years.
A Supposedly Fresh Start
We were supposed to begin a new chapter.
After trying to make ends meet in the ever-changing city of San Francisco, we decided to change our lifestyle and nix the two hour-plus daily commutes, rising costs, and exorbitant rent in favor of a quieter pace of life and a new job in North Carolina. It was all to give our newly-arrived daughter a better life and spend more time with her.
My wife accepted a position across the country in North Carolina, and we moved and settled in. Her commute was a mere ten minutes. Our daughter was with a wonderful nanny to allow me to work remotely as a writer. We found our dream home, then we bought our dream home.
At the closing, my wife was sick. Allergies, they said. For the few weeks leading up to the closing, she was coughing and not feeling well. Numerous doctor visits led to prescriptions for allergy medication and the resolution that we’d landed in North Carolina just in time for their nasty allergy season.
But, she didn’t get better. She got weaker and more tired. She started to develop pain in odd places — her hip and chest. By a strange miracle, our daughter caught Walking Pneumonia and my persistence led her to see another doctor who ordered chest x-rays to see if she, too, had pneumonia.
I’ll never forget the call.
I was working in a local coffee shop and my wife’s voice sounded dramatically different and scared. She said the doctor saw lumps in her chest imaging. She wanted her to get an MRI that evening. I immediately knew what it was.
You see, cancer has clouded our life together since almost the beginning. Right after we got married, my wife developed an odd, purple bump on her arm. After repeated nagging, she finally scheduled a dermatologist appointment. The doctor didn’t seem too alarmed, but yanked it out for testing. The results shocked and changed the course of our lives forever. It was Melanoma – skin cancer.
Doctors ordered a surgical procedure to carve out a large swath of upper arm where the bump was and removed a series of lymph nodes to detect if cancer had spread further up her arm and into the bloodstream. Post-surgery, we learned that they got the remnants of the tumor out and about a week later we learned the lymph nodes tested negative for melanoma. We were in the clear.
If caught in its earliest stages, Melanoma is like the other non-fatal skin cancers and is not only treatable, but entirely beatable. After vigilant follow-up care with oncologists and dermatologists for the next three years, we were told that we entered around a 90-percent chance of never seeing it again.
But, when I got that phone call and heard that there were odd bumps in my wife’s chest, I immediately realized what we were dealing with. The Melanoma was back.
An Uncertain Future
The weeks and months after that x-ray are, to be frank, a cloudy nightmare I do not wish to relive. My urge to see Melinda survive and my mind’s attempt to deal with the diagnosis sent us on a path of trying to live our lives, raise our daughter, work, and at the same time seek treatment options. I’ve almost assuredly jumbled events in retrospect.
There was a strange phone call from a night nurse reviewing Melinda’s first MRI after the x-ray that sent us scrambling to an ER at Wake Forest Baptist Medical Center in the middle of the night. As we sat there begging for clarifications to an as-of-yet unknown diagnosis, we were left without answers. A few days later, they scheduled my wife for an invasive exam to remove one of the lesions and test it.
After the procedure, my wife, confused from medication, sat there in a stupor as a doctor came over to tell us she didn’t know exactly what it was, but that it was almost assuredly cancer. Given my wife’s previous history of Melanoma, we weren’t dealing with just a rogue tumor. I instantly sunk into a chair with my mother-in-law, shrieking and crying and terrified. This was Stage IV cancer.
Support From Unlikely Places
Apparently coffee shops in Greensboro, North Carolina have been etched into my brain because I had another coffee shop moment when I was frantically researching options for my wife and trying to learn as much about stage IV melanoma as possible.
The numbers were truly awful and terrifying. I became the barrier between my wife and family to absorb the dark, sordid details and survival curves of this terrifying diagnosis so that she could focus on being strong and positive.
As a trained journalist, my instinct is to never stop asking questions. I simply cannot rest until I get the answers. So, I plunged into researcher mode and sought out as many resources as I could. The biggest learning for me in this episode of our lives was to never settle for anything and do whatever I could to get the best care and options for my wife.
In the pantheon of cancers, stage IV melanoma is one of the most terrifying. While data at the time of my wife’s recurrence was a bit dated — and as we’d soon learn, advances coming down the pipeline for melanoma were drastically changing — the statistics for her melanoma that were available at the time were utterly defeating. For many stage IV patients, survival was measured in months.
But, as I started to learn, those survival stats meant nothing.
One of the first names I stumbled upon sitting alone in that Greensboro coffee house, tears welling in my eyes, was Mary Elizabeth Williams, an author who had just published a book about her experiences with cancer and how cutting-edge treatment during a clinical trial saved her. She was a stage IV melanoma survivor and tweeting about some new treatments featured in her book. Without hesitation, I reached out to her by sending a direct message over Twitter.
Remarkably, she got back to me right away and told me I could call or email her. With that message began one of the most rewarding relationships we forged during our darkest hours.
When writing to her, I described the surreal pain and unreal panic of dealing with this diagnosis and my fear of raising a daughter on my own, without her mother. Instantly, I was calmed by her message.
“Hi. And congratulations on your daughter. Hazel is a beautiful name and daughters are AWESOME. I am so sorry your family is dealing with this shitstorm. FUCKING CANCER,” she wrote.
I had reached out to numerous doctors, including a well-known researcher and immunologist, Dr. Antoni Ribas, at UCLA. I scoured message boards for his email and to my astonishment, he reached out and even called me to help direct me to doctors that we should see.
Mary Elizabeth not only gave me background on her diagnosis and treatment, but she also helped direct us on how we could find a doctor who would give us a combo-cocktail of new drugs that had just saved her life. She was on the clinical trial of Ipilimumab and Nivolumab, a combination immunotherapy treatment pioneered by none other than the subject of the documentary Breakthrough, Dr. James Allison.
Because of the success of that clinical trial — the very one that saved Mary Elizabeth, the treatment was fast-tracked for FDA approval and was just becoming available to some of the top cancer centers, including the one we eventually settled on, Duke University’s Cancer Institute.
And, as we began the scary road of treatment and all the unknowns, Mary Elizabeth became a force of positivity for my wife, and proof that she could beat this with this revolutionary cancer treatment.
A New Normal
The treatment required my wife to visit the doctor every two weeks. Scans would check her progress every three months.
Together, we juggled our schedule and work, and went to Duke University for bloodwork and immunotherapy treatment in the cancer center. We started to consider our bi-monthly Duke doctor visits to be our date day, a chance for us to be together. During one of my wife’s treatments, we decided to pull the trigger and book a trip with our family and daughter to London for Thanksgiving.
While the concept of chemotherapy for many cancers is a tremendously painful experience, immunotherapy is a bit different. It “takes the brakes off the immune system” and throttles it into overdrive in an attempt to fight the cancer. Because of that, it does have a host of potential, very serious auto-immune side effects, but aside from being tremendously tired, Melinda was able to live a normal life.
The results of the treatment were almost immediate. Within one treatment, she started to feel like normal. Some of the tumors that we could physically see started to almost melt away within a matter of weeks. The first scans after starting treatment confirmed what she was feeling: Tumors were shrinking all over her body.
Within exactly a year, all of the tumors across her entire body were completely gone. What began as a tremendously terrifying experience gave us a reprieve that almost seemed impossible given the odds. But thanks to a pioneering doctor who never gave up — Dr. Allison, my wife was able to get a new opportunity to live. When my wife was going through treatment, she never once was negative. She was certainly scared, but never let that on to me. The one fear she said she had was not being able to see her daughter grow up and to be there for her, or have her know who she was.
In a few months, we’ll celebrate our daughter’s fifth birthday. And as we get further and further away from the terrifying 2+ years of her diagnosis and treatment, we get further and further away from the terrifying survival curves that used to dictate Stage IV Melanoma. Instead, we focus on living.
Now, we have a mantra of striving to live the life we want, by traveling and enjoying our time together. When you stare down late-stage cancer and win, you get an entirely refreshed outlook on live. It’s a second chance and one we are determined to take advantage of. Every day is truly a gift. Every night, a kiss and a hug is that much more important. Every morning when we head off to work, our embrace is that much more meaningful. Because of cancer, we truly understand how precious this life is.
Tips & Resources
Throughout this ordeal, there were a number of key lessons that I learned:
- Taking Care of Yourself: For supporting spouses, there are not enough words to describe the challenge of being a caretaker, parent, employee, and all the other things that go along with dealing with a disease like this. I was able to recognize fairly early on that I needed help beyond my family and started talking to a psychologist. It helped me to be able to provide the support for my family while being able to talk through the emotional weight of what we were dealing with. I learned a lot about myself in the process. For us, even though we’re in the clear now, the threat of cancer coming back never goes away. Every four months now for the next three years, my wife will return to a cancer center to get scans and see how she is doing. It never really gets easier getting close to these checkups, but we lean on some advice from my psychologist and do the things we love to do together as a family, whether that’s going out to dinner or taking a weekend away before the scan.Read more: Guide to Counsellors & Therapy in Singapore
- Connecting to Survivors: In addition to connecting my wife to Mary Elizabeth Williams, I also was able to find some other Stage IV Melanoma survivors. When my wife was first diagnosed and we were researching treatment options, I visited an annual melanoma patient day at the University of North Carolina, one of the places we were thinking of going. At the event, they had a panel of patients, including an incredible woman named Janet who had Stage IV Melanoma — so many tumors in her body at one point that doctors stopped counting, and had multiple lesions in her brain. Today, she had been cancer-free because of the immunotherapy drugs, too. By complete happenstance, Janet had lived in the same city we did, and I worked with the nurses to get in touch with her, and she has become close friends with my wife. Because Melinda can pick up the phone and text or call these people, it has not only given her a support network, but a vital connection to people who survived the very thing that threatened our existence. We found it tremendously helpful to have these people in our life because they beat it, and it allowed her to think positively the entire time she was facing treatment. In Singapore the Singapore Cancer Society is a good resource to start with.
- Advocating For Yourself: When an illness strikes, it may be difficult, but someone has to take point on researching as many options as they can and seeking out multiple opinions. For something like cancer, there’s a surprising dearth of connected resources out there to help patients before they start treatment. And, for late-stage cancer diagnoses, there’s another entirely challenging world to navigate with clinical trials and the last-ditch treatment options that may exist. Thankfully, we never had to use them, but I was researching options and figuring out that world because I wanted to have something to fall back on if we needed it. Let’s just say that clinical trials are a murky and difficult world to navigate, but at least I got started. Always be thinking two steps ahead of where you’re at. (NB: Duke Cancer Institute where Taylor’s wife was a patient is part of the same global network as the Programme in Cancer and Stem Cell Biology at Duke-NUS, which runs its own clinical trials here in Singapore ).
- Family & Friends: One of the wildest things we realized was that everyone takes a serious medical diagnosis differently. Families can be torn apart, or get closer because of something like this. Many couples even face the added risk of divorce following such a diagnosis. Thankfully, ours is in good shape. But, along the way, we learned that family and friends, no matter how close, will react to a cancer diagnosis and either retreat or come closer. The only thing we can do is focus on ourselves and not stress about other people. Surprisingly, one of the most interesting places to just vent and hear from people when needed was private Facebook groups where other caregivers were talking about their challenges and ordeals.
- Likewise, we’ve also become advocates for our ordeal in unexpectedly public ways. My wife was featured on a local television news story. She and Mary Elizabeth have flown to California to advocate for melanoma treatment and immunotherapy. And, we’ve also been connected to others we don’t even know who just need someone to support them or just to listen.