Cervivor Dad

It’s strange to think back on my experience as a husband and father when Mary was in treatment because for most of that time I put myself to the side. Everything was put on pause to focus on making sure she was getting to her appointments, as comfortable as her body would allow, and – on the good days – eating.

I’m not complaining. It’s just what you do. When a little kid gets hurt, you run to check on them. When something catches fire, you put it out. And when your wife is diagnosed with cervical cancer that’s spread to her lymph nodes, everything else seems pretty small by comparison.

When you’re in an emergency situation, you suddenly become very clearheaded and logical. “Let’s see. The dog is on fire, so that’s probably the first priority. Let’s get a blanket on her. Okay, that’s out. Mental note: call the vet after this. Now the teenager is under a burning rafter and the baby is in the playpen. So yell at the teenager to carry the dog out and grab the baby with one hand and the diaper bag with the other, just in case.” Later, after the emergency is over, your brain exits Survival Mode and lets you collapse into a pile of trauma-flavored Jell-O.

For those months between diagnosis and the “all clear” sign, it was an emergency situation. My brain shut down most of my emotions so I could A) better attend to Mary’s needs and B) survive the stress and fear without sinking into despair or having seven simultaneous heart attacks.

I’m lucky. My coworkers are very understanding and sympathetic when it comes to family matters and the nature of my job allows me to work from home. Thanks to that, once Mary’s treatment went from surgery to external radiation every weekday, chemo once a week, and several internal radiation torture sessions, I was able to stay home with her and bring my laptop to chemo.

What was hard was watching her waste away. That was a sadness I couldn’t turn off. She had no appetite and became weak and skeletal. Walking 20 feet to the bathroom was exhausting for her. It hurt to see her suffer, and I think I used my work as an excuse to sit in the living room to witness her suffering a little less, which I’m not proud of. I never allowed myself to imagine what would happen if she didn’t make it. It’s like asking what you would do after the world blew up.

Helping the kids was easier. Our teenager was zealously optimistic. He knew with the certainty of youth that his mom would be fine. I was jealous. Our daughter, on the other hands, buries her emotions (like her dad), so comforting her took some effort. Once she was ready to talk, she appreciated the reassurance, but until then I just told her it would be okay and trust that the words made it into her ears.

Their grades suffered, but I couldn’t get upset with them. I was letting the place become a pigsty and slipping some at work myself. You may have heard, cancer is a little distracting. I figured we’d all straighten out when it was over, and we eventually did.

A year and a half later, Mary still has trouble. Some lymph nodes were removed, so her legs and feet swell up. She also has some serious anxiety. It’s gotten better, but she has good days and bad days. Seeing her struggle made me open up about my own lifelong depression and anxiety, mostly so I could help her. I talk her through bad times if she needs it and we give each other space if one of us needs that. The kids know that sometimes people need alone time and that’s okay.

Like many who face death, we came out the other end more focused, like we were forged in the fire. Mary speaks and writes about battling cancer and her volunteering fills me with awe and pride. The kids are more appreciative of basically everything. And I learned that openness is not lethal. We’re all doing things we want to do, skipping things we don’t, and being fuller versions of ourselves.

We know that if it resurfaces and she has to go back into treatment, we’ll have a better idea of what to expect and what to ask. We also know the statistics and the odds. But until her next regular oncology appointment, we’re just living life.

Dan lives in Richmond, Va. with his wife Mary and their two kids. Dan and Mary met when she started coming to see bands play at his house. She fell madly in love with him after hearing his college radio show which featured terrible music and a fictional wrestling program. Now Dan proofreads credit card websites, which is as exciting as it sounds.

The Cancer Trauma Project

Cancer Related Traumatic Stress is real and the The Cancer Trauma Project, together with Cervivor is doing something about it. We appreciate this opportunity to share our project with the Cervivor community and to make a lasting impact. The Cancer Trauma Project seeks to promote understanding of the emotional trauma people experience from cancer. We do this by listening to stories, writing, speaking, and training providers and we need your help.

Cancer Related Traumatic Stress is related to Post Traumatic Stress Disorder (PTSD) in that it falls on the spectrum of stress-related mental health conditions but it is not widely recognized. In fact, if your medical team told you about it, please contact us because we want to thank them! More often people aren’t told about Cancer Related Traumatic Stress even though people with cancer are often screened for distress. Distress and traumatic stress are very different. We might be distressed about being late to an appointment, having another scan, preparing for surgery or something else. For the most part, when the event that is causing us distress is over, we are OK.  With traumatic stress, the effects are lasting, might not show themselves until long after the event, and are often marked by experiencing the same thoughts, feelings, and body sensations as they did during the event, even though we know we are nowhere near the doctor’s office. This is a hallmark or trauma – your body remembers the event and can activate the same feelings and sensations as if you were there again. In its extreme form, this is a flashback.The most common events during the cancer journey that cause traumatic stress are the diagnosis conversation, the time between that conversation and a treatment plan or starting treatment, and follow up scans. But we know that the cancer journey is fraught with many more daily events, like having to get another needle, realizing that your plans for biological children may be over, losing your hair, figuring out how to explain to employers why you were out of work, medical bills, the onslaught of “well wishes” from others, sharing the news with loved ones, especially children, and many others.

The Cancer Trauma Project has collected over 50 stories. We incorporate these stories into our writing to demonstrate the impact of cancer related traumatic stress. Hear the words of one survivor:

The chemo. You feel like you’re really sick. It’s the chemicals and not the cancer but your mind can’t distinguish that. So emotionally you’re dying. I felt like I was facing my death even though I had some chances I wasn’t going to die. I could have. But I gripped it like I could die.

The biggest thing is I couldn’t ever feel grounded. I felt I was always on, trying to go 100 miles an hour to try and deal with everything. It is as if you’re playing dodge ball and everyone is always throwing balls at you.

I’d stay up late at night, my heart was racing, my actions were quick, trying to figure things out. Panic is disorganized but I would focus on let’s get on with everything. That stayed at a heightened level.

When we talk about the emotional trauma related to cancer so many people validate what we are saying but when push comes to shove people aren’t getting the right kind of mental health treatment and that is a BIG issue. To be effective we have to hear your stories. We are grateful that the Cervivor community teaches cervivors how to powerfully share their stories. We all know that having cancer can be a very stressful experience for both the person with cancer and their support system. But what hasn’t been clearly documented is the way the stress of cancer is emotional trauma. The Cancer Trauma Project is looking at trauma as Dr. Saakvitne and her colleagues did. Trauma in people with cancer is the unique individual experience of an event, a series of events, or a set of enduring conditions, in which the individual’s ability to integrate their emotional experience is overwhelmed.

Your story provides the wisdom that guides our work. If you’d like to participate you can complete our screening or send an email to contact@cancertrauma.com. After you complete the screening form, we’ll follow up to schedule an interview or send you the online interview. If you’re in the Washington, DC area, we’d love to meet you in person. If we are going to truly help people with Cancer Related Traumatic Stress, we need to know how the emotional trauma of cancer happens. By listening to your stories, the Cancer Trauma Project will learn from you and spread the word through writing, speaking, and training. Please join us in this mission.

Click here to complete the screening to share your story.