Chris and Anne had been married for fifteen years when she was diagnosed with metastatic breast cancer. (See Anne’s story here). It’s now another seventeen years later, and they’re still going strong. Read on to learn more about Anne and Chris’s remarkable journey together:
Q: Thank you so much for speaking with me today, Chris. I know our diagnosis can be so difficult for our loved ones as well. What was it like when Anne was first diagnosed?
It’s pretty heavy, emotionally, when I go back over what I was thinking about in the first weeks and months after diagnosis. To many Baby Boomers, cancer means death, even though that’s obviously not true anymore. I had to work really hard to compartmentalize so I could go to appointments, be a parent, go to work and not get overwhelmed by the fact that my wife and mother of my children had this illness and could die. I had to try to stay in the here and now, daily. I didn’t really have the bandwidth to research it or learn about it; I was just getting by at first. Anne was the one who wanted to learn about all the prognoses and treatments.
Q: Did that change as time went on?
It did. In a kind of second stage, some months after diagnosis, I got over figuring out how to act and be, then I got more up-to-speed with research and treatment plans and questions to ask at appointments. I was more directly helpful in the medical part. At appointments, the patient hears with one set of ears and the significant other hears with another set. You really benefit from having two sets and comparing notes later. I also got better at learning how to deal with the awkwardness that people have about a wife and mother with a life-threatening illness. I got better at managing how our school age boys could deal with outsiders, most of whom were well-meaning but pretty clumsy. I got better about talking to each of our kids at the diagnosis and treatment milestones (especially the metastasis findings), with the boys at their varied ages. It was a different conversation with each. Honest, but “detail-adjusted” for their ages.
Q: After Anne had lived with metastatic breast cancer for a few years, how did your relationship evolve?
At some later stage, when I felt like I had reached a routine about how to live, I had enough time to think, what does this really mean? Your role as a husband is completely different than before cancer, so what is that? I know this isn’t true for all husbands in this situation, but I didn’t mourn the loss of the relationship we had previously. It seemed pointless. I thought, with the pieces we have here, what can we assemble? One of the really good things that came out of this was that things we previously disagreed about became completely irrelevant. All the little stuff like, “are you really going to buy the white couch?” went away. When all that stuff went away, our relationship actually improved in some ways. We sort of hit a new level of dignity. You know how you’ll see on TV these couples married for 60 years and they say these lofty, dignified things about each other? I used to think, “that’s just TV…there’s no way we’d ever be like that”. But after the diagnosis we talked more about stuff that had gravitas and great import. Our relationship became more respectful and dignified, like those old people on TV. Kind of a gift, in a way.
Q: It seems like focusing on the truly important things in life made your marriage stronger. What else was helpful?
Big-picture thinking helps. Couples who are really focused on the next cool thing, or vacation, or whatever, I think sometimes have a tougher time with the sheer disruption of illness. Those who have a longer view of things have a better shot at adapting, I think. Also, the things that generally weigh on marriages can be put into hyper drive. Money is tough on marriages. We were lucky because we had, and have, good medical insurance. A thick skin about illness generally also helps in the marriage. I had some prior experience with chronic illness in my family, so the idea of not everyone in the family being “ready to go” all the time wasn’t new. Just plain mental toughness helps both spouses. I grew up around people who were pretty resilient. Part of my family is rural people. My grandfather lived a very physically difficult life, working outdoors in freezing temps, working in a coal mine, yet he lived, happily, to be 102. With him, it was clearly more mental than physical. Not 100%? Go to work anyway. Know how to take physical care of yourself and keep going. I’m sure my grandfather’s father, who drove livestock between Canada and the mountain states, had to ask himself more than once “do I have enough food to make it to the next town?” That’s a “here and now” way to live and I think a little of that made it through to my generation. Anne is every bit that tough, too. Displaying that resilience to each other and the kids has been a big deal for the marriage.
Q: After some time had passed, how did you approach thinking about the future?
Well, the future means something different now. We certainly plan less long-term stuff. And at the beginning, we were pretty good about being candid. What happens if you’re not around? To me, to the kids? We were able to have those kinds of talks. I think it was therapeutic for the both of us to just say it. I felt like I knew what she wanted. It helped that she didn’t feel like she had this secret of frailty. It was out in the open.
Q: What is life like in the day to day?
If I do what I have to do every day, some normalcy forces itself in. Making room for normal moments, even though they come and go, is key to having a life. I try to do the basics at home and at work every day no matter what, so that leaves some space for parts of life to be okay. When normalcy goes away and I’m feeling down, I also remind myself that each moment is temporary. Human existence is success and ease and struggle and failure and everything on the continuum in between. As a spouse of a patient, realizing that cancer makes that spectrum of emotion incredibly wide, and that challenges will arrive and depart abruptly, is half the battle. In the first months after diagnosis, it felt like going from a wedding reception to a car wreck three times a week. I had to adapt to that. I think we’re all wired to adapt as needed; once you understand it, you can handle it.
Q: How do you help Anne when she experiences a setback?
Many guys sort of default to the fix-it mode in the western culture. Some guys, if they can’t fix it, they bail. Others say, “I’ve done everything I can so I’m going to the gym.” Some guys feel like a failure. Over time, I learned not to default to “fix it” mode, or to feel defeated. Mostly I scan and see if there’s something I should do immediately. It often starts with a few questions. “Do you want something? Do you want me to hold you or do you want to be by yourself?” The exception to that approach is recognizing a physical issue and acting promptly, like if she’s literally having breathing problems or a symptom that we’ve been instructed to watch out for. An example would be if her fever spikes and I need to make a decision on calling the doc when she’s not up to deciding herself. Then it’s more like “fix it now” mode.
Q: What else would you want a significant other to know once their loved one has received this diagnosis?
A year into Anne’s diagnosis, I realized that nobody ever asked about me or how I was doing anymore. My health seemed like a non-topic. I had a serious emergency room health scare at one point; as soon as it was clear I wasn’t dead, it was forgotten by everybody other than our kids. Actually, pretty funny. I’d say significant others need to realize that change is coming in how people perceive you. It honestly took me a few years to really adapt to that. And you’re going to be busier, so do what you need to do to take care of your physical health.
Q: Speaking from personal experience, people may ask you about Anne rather than asking Anne herself about how she’s doing because they feel too awkward. Sometimes that’s a pet peeve of mine. Some relatives or family friends ask my family how I’m doing rather than asking me directly when they actually see me. I find myself making small talk to put them at ease so they don’t feel awkward around me and that just feels exhausting sometimes.
Yes. People sometimes do that to protect themselves because they’re scared of the answer and don’t know how to talk to the person with cancer. That indirectness pervades our society, I think more now than in the past. I used to feel righteous indignation about it. I wanted people to see things more clearly, that life is messy and avoiding it won’t make it go away, but then I just decided I couldn’t do much about it. This is how they’re going to be. It’s not my job to make them feel ok about it.
Q: Do you go with Anne to all her appointments?
I don’t. When it comes to work, I’m an extreme follower of ritual, and early on Anne said, “Don’t come to treatment with me. Just go to work and keep doing your work. I’ll take a girlfriend with me.” She has been so tough that way; after a while, she made going to an infusion sound like getting her nails done. There were nurses who didn’t think much of me for that; I remember one in particular thought I was a great big a-hole. I go to every appointment Anne wants me at, which is mostly Doc appointments when we are consulting on new test results or considering a change in treatment. By not going to every single appointment and treatment, I know I’ve been better at being a cancer spouse. I knew I was getting work done, supporting the family, and Anne and the boys knew it too. It helps preserve normal moments to return to, when possible. If you measure a cancer spouse by how many appointments or tests they attend, you’re probably “chasing metrics instead of outcomes” as they say in the business world. Just make sure to be there when you’re actually needed.
Q: What else helps you navigate this journey?
I’ve always been an exercise person. I’m always looking for the next thing to do. I ride a bike some now; years ago, I was into rowing and I sculled for 15 years. Now with COVID, I just ride the bike for a while and do a bunch of pushups every day. Staying physically well helps me a lot. It helps with the ability to sleep and the immune system. Just seems like I have more in the tank mentally.
Thank you, Chris, for so generously and thoughtfully sharing your experience. This disease can be extremely difficult for our loved ones; and I know that Anne, I, and others with strong support systems feel grateful to have people around us who aren’t going to run the other way. They are always there, fighting alongside us, and that is an amazing gift. It can be extremely challenging at times though, and I know your words will both help and comfort spouses of newly diagnosed patients. Your marriage proves that relationships can survive and thrive after this diagnosis…even if they look different than before. Thank you again for sharing your remarkable love story with us!