Open Letter about Cancer and My Marriage

Subject: Open Letter about Cancer and My Marriage
From: Anonymous
Date: 26 Feb 2013
Note: Ask any survivor about side-effects or working with an oncologist and you’ll receive a notebook’s worth of helpful information. Ditto for managing cancer on the job or with children. But ask them about their relationship and you’re apt to hear variations on this theme, “He never blinked,” or “He really showed me how strong a man he truly is.” In other words, you’re not apt to hear what it’s truly like for some women. While we celebrate relationships where love’s better nature rules, it’s also time to honestly share the kind of stress cancer and its associated treatment brings to many two-income families where jobs, children, carpools and chemotherapy all need to be balanced in the course of a day. I was asked by a woman whom I admire to publish this essay here. It is my honor to do so.

--- Jody Schoger

I never thought I would write an anonymous blog post.

Nonetheless, here I am, writing about cancer’s impact on my marriage after my late-night Google searches only yielded stories of marital triumph, replete with images of the devoted spouse proffering a tender kiss on his partner’s bald head. My hope is that the next despondent, lonely cancer patient might feel a little less crazy reading my story

I love my husband and do not want to be disloyal to him. I will remain strategically vague on some details and alter others to shield my family’s privacy. We have had the kind of marriage people say they can bet on. Single friends confess that they hope to find a partnership like ours. Obviously, things are always messier on the inside, but we undoubtedly share a strong love for and commitment to one another.

When I was diagnosed we’d been married with children for more than a decade. Like every couple we had our strengths and weaknesses. We were strong in the communication department, which allowed us to navigate the transitions of parenthood, moves and job changes.

Even with these strengths at our disposal, nothing challenged our relationship like my cancer diagnosis. I was in treatment for almost a year, with follow-up drugs and surgeries that impacted my quality of life for a prolonged long period of time, far longer than either one of us expected. I had chemo, a mastectomy and radiation which was then followed by a series of reconstructive surgeries. All the while, I held down a job, tried to help raise my children and hold things together.

Our marital glue was communication, adventure, and sex. Chemobrain wiped out my ability to communicate, especially about emotional issues. Strong emotions made me queasy, leading me to shut down even more. Also, my forgetfulness was a constant source of frustration to my husband, who came to treat me like one of the children, nagging and cajoling me.

The painful truth was that he wasn’t totally off-base in doing this. He had to keep the household together, and I was falling apart. As for adventure, it is hard to be spontaneous when you are immunocompromised, nauseated and unprepared for the undertow of fatigue that can pull you in and wipe you out. And of course, our sex life was horribly disrupted. Given the length of our relationship and the presence of children, we were surprisingly regular in our sexual activity. Chemo brought on chemical menopause; the mastectomy took away a critical erogenous zone and left me with profound loss of body confidence. Radiation, for me, was painful and a complete energy drain. All this together is the opposite of sexy.

I have read accounts of the sympathetic, supportive husbands who wait patiently for a partner to heal. My husband was like this probably two-thirds of the time. But he is only human. All the things I couldn’t do he did ... from driving carpools, cleaning the house, doing laundry, communicating with teachers, mediating sibling spats, and tween-age drama. He was holding down his own job, and could only watch as the little energy I had energy my went to my work. By the time I arrived home I was completely spent and totally unavailable emotionally or sexually.

Plus my bitterness at the length of treatment grew as the months dragged on. If it had been a month or two, I think we could have endured it and come out relatively unscathed. But this has gone on for years. Not only was this ordeal loosening our glue, but the friction points of marriage – the ways we see things so differently –– began to push us further apart. Because of my limited energy and concentration, we couldn’t have one of our major realignment conversations that used to bring us back to a place of mutual understanding and respect about our differences. Add to this mix the financial strain of decreased income and increased expenses. A chunk of my income comes from freelance work, which was now off the table because of my illness. Even though we have good insurance, I was stunned at how quickly medication co-pays and deductibles added up to big numbers. Money is the source of conflict even in stable situations and we began to argue about purchases that never were an issue before.

Eventually we hit several crisis points. There were the periodic pity parties my husband had about his utter deprivation, emotionally, physically and sexually. It was a stretch for me to comfort him, since he was basically right. Guys really don’t reach out to other men when they are vulnerable. Where I am sure my girlfriends would have rallied to my side had our roles been reversed, he was left basically alone. None of our extended family members live near us. There wasn’t a grandparent, an aunt or even a cousin to give him a break for any length of time. Nor did it help our bond that he was petrified at the idea of actually losing me. At his lowest moments, he would vacillate between his frustration with my helplessness and the terror of my possible death. He told me through tears one day, "I can't stand that the one person I want to talk about all this with is you, and you are really not really able to talk." Another crisis came after my treatment was over and I started to regain my cognitive and physical energy. It would no longer do for him to treat me like his other child. But it takes more than a simply saying, “Mom’s back in business.” The children had learned that Dad was the Real Parent in the house, an idea reinforced by the ways he would second-guess my authority as a mother. It was difficult to stand up to this. How do you stake a claim to your authority when you are not the same in memory, strength, or energy? I confronted him about this. To his great credit, he has worked with me to rebalance our parenting team, with the understanding that I am still not 100 percent. Regaining authentic balance in our partnership remains an ongoing challenge.

Our sex life is on the mend but is still a source of strife. I have not figured out how to feel comfortable naked, with all the scars riddling my torso and the false breast that feels numb and dead. My energy remains unreliable. At night, once the dishes are washed and the children tucked in, I often want to crawl in the bed to sleep. We are trying to be more deliberate about carving out time for ourselves and our relationship, but it is so hard. So, so hard.

There is a lot of talk in the cancer world about survivorship plans for patients. What I really need is a survivorship plan for my marriage. In my support group, I see a lot of people getting divorced after the crisis of treatment subsides. These wounds cut deep, touching our greatest insecurities. Luckily, I do know a handful of survivors whose marriages did recover. I just wish I had more of a roadmap for how to steer my marriage toward success and away from the potential disaster.

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