Untangling Survivorship Together

At the end of May 2005, my boyfriend Andrew was diagnosed with Acute Lymphatic Leukemia (ALL). He was twenty-two years old. I was twenty-three. Of all the things we were supposed to worry about in our early twenties, cancer was not supposed to be one of them.

It’s been sixteen years since Andrew received a stem-cell transplant from his sister. We will celebrate our fifteenth wedding anniversary in December.

We first talked about getting married in a hospital room, cuddled together in the dark to a lullaby of beeping machines. The leukemia made Andrew neutropenic, which meant he was at high risk for infection. As a result, he lived in the hospital for around a month at a time twice that summer. Most nights I stayed there with him, pushing a cot up to the side of his hospital bed, holding hands across the divide.

When we weren’t sleeping, I was often lying next to Andrew. In those early days, before we knew all the nurses by name, our bodies were so intertwined on his hospital bed, the doctors and nurses often didn’t know which one of us was sick.

Soon it would be easy to tell. I shaved his head before he started chemotherapy. He would have a port placed under his left clavicle. He lost weight. The time in the hospital had its ups and downs. It wasn’t easy and at times it was really scary. Ultimately, he was lucky, and he received a stem-cell transplant in late August 2005.

One hundred and twenty days later, he asked me to be his wife. When I said “yes” that December night, I silently said a prayer for Andrew to live long enough for us to have a wedding. A year later, when we raised a glass of champagne to his oncologist at our wedding reception, my eyes filled with tears of gratitude for making it to that moment. No matter what happened in the future, I would have this memory.

We began our marriage at twenty-four and twenty-five years old. At the time, I felt I understood what love and commitment was more than most of my peers. During our vows, we laughed at the “in sickness and health” part. I had already walked him through his sickness, and we had come out on the other side victoriously.

Early survivorship would prove to be another sickness altogether. Unlike our time in the hospital, which was staffed with a medical team and supplemented with the support of family and friends, we were on our own. Andrew had survived—the only prescription left to take now seemed to be to move forward and live the life so graciously spared. No one prepared us for the PTSD, depression, anxiety and general loss of confidence Andrew would experience. I had no idea how to help him through it, let alone the ability to understand that I had my own trauma from his sickness to work through.

Andrew’s cancer diagnosis had shaken me and awakened me to life’s fragility. For a while, every life moment we shared together seemed like I was collecting memories for safe keeping. Packing them away neatly so they could last me a lifetime in case our lifetime together was cut short. I found myself secretly taking pictures of his hands, his feet, his tattoos. If I eventually lost him, I wanted to be able to look back and remember the shape of his hands or the lines on his face when he smiled. I was struggling, but I was supposed to be the strong one, the caretaker.

For years, the fear of his cancer returning was always present, but not always at the forefront of our minds. Sometimes it was hidden so far in the back it seemed like we had finally lost it, only to have it surface once again. There was a constant tension between attempting to move forward and being tethered to the past, haunted by his leukemia. Because we had no peers going through the same thing, we didn’t have words or context for what we were experiencing.

In 2006, the same year we got married, Andrew founded the Dear Jack Foundation. It was designed to focus on adolescent and young adult cancer patients and survivors. Throughout his diagnosis, treatment, and early recovery we realized how little was really known about meeting the physical and emotional needs of cancer patients in this age bracket. He wanted to help make it better. The Dear Jack Foundation would continue to grow in the following years, adding our first signature program called the LifeList. To this day, the LifeList continues to grant wishes to adolescent and young adult cancer patients who have received a life-threatening diagnosis, wishes that give them something positive to focus on outside of their treatments, something to look forward to.

Through the Dear Jack Foundation, Andrew and I had the opportunity to meet other young adult cancer survivors and their partners. In our conversations, Andrew and I started seeing some common themes within their survivorship experiences and ours. For the first time, we did not feel alone.

It took us far too long to seek help and guidance from a therapist—six years after his stemcell transplant. Our therapist was able to give us context for our experience with Andrew’s early survivorship. Through our work with her, Andrew learned to unpack the trauma of his sickness and manage the emotional repercussions of it.

Having some of the burden of caretaking and healing off my shoulders allowed me to finally face my own anxieties around Andrew’s sickness. In our therapist’s office, I learned how right those early doctors had been, the ones unable to distinguish which one of us was sick. I had spent so many years with Andrew navigating the tumultuous seas of his early survivorship, we had become sick together. It took time and intention to untangle it all.

Once we had enough perspective on Andrew’s early survivorship, I realized how sad and angry I felt over how long it took for us to get the tools we needed to heal. We couldn’t change our past, but we could help others, so we created a new program within the Dear Jack Foundation called Breathe Now.

Since 2017, the Breathe Now program has welcomed small groups of young adult cancer survivors and their partners, who are one to three years removed from their last date of treatment, on a four-day wellness retreat. In this uniquely designed experience, couples are offered opportunities to bring balance back to their relationship with the help of psychosocial break-out sessions and the introduction to healing tools and experiences such as yoga and meditation. Participants are given information to help them cope with the complexities of adolescent and young adult survivorship, and the chance to create bonds with peers who have shared a similar experience. In so many ways, it is what I wish Andrew and I had. It has been incredibly healing to be able to provide this experience to others.

Andrew and I continued to heal together over the years through therapy, the practice of yoga, meditation and mindfulness, and the support of our friends and family. However, there were still times when the ghost of his sickness came back to haunt us. There may still be times ahead. I don’t expect that will ever change, but I do think it will become less frequent.

Yet, sixteen years later we have a life I wouldn’t have allowed myself to dream of back in that hospital bed in 2005. Sixteen years of memories, sixteen years of life together. I no longer collect memories like a living scrapbook of someone I might one day lose. We are finally living the life that was so graciously spared. We now have a seven-year-old daughter. She grounds us in the present and has us looking forward into the future these days instead of feeling haunted by the past.

We are getting older now. We both have some lines on our face and some gray in our hair. I recently realized how I never fully allowed myself to imagine us growing old together. It seemed like too much to hope for back then. I am allowing myself to picture it now. Of course, there is no guarantee of how long we have together, but there is no guarantee for anyone.

After everything we have been through, we feel alive and well. I have learned people can recover from things that seemed impossible to recover from. Somehow, we have found a way to live with hope, joy, and courage when at times surrendering into despair seemed like a real option. I am so grateful for the people and the practices that got us through the toughest moments. To be able to live through it all — the good and the bad, the sickness and the health — to accept it all as a part of our life has been our path to living our best life.

This article was featured in the September issue of the Elephants and Tea Magazine! Click here to read other stories from the latest magazine!