As we waited, I texted with our wedding planners about flowers as a way to distract myself from our surroundings. Between texts, our doctor walked in, sat down, and said calmly, “Tijn, you have a rare form of cancer called Burkitt lymphoma. It’s very aggressive. We advise you to start treatment immediately and cancel your wedding in Italy.” Burkitt lymphoma is a rare type of mature B-cell lymphoma. Fewer than 2,000 people each year are diagnosed with it in the United States. Survival rates are variable. Prompt treatment is associated with long-term survival. Tijn’s case was advanced, stage 3. The lymphoma had already spread across the majority of his lympathic system, appearing in his neck, abdomen, and groin. It was a shock. Tijn was just 30 years old, a nonsmoker, healthy eater, and everyday athlete. Though we had “known” for a few weeks that he might have cancer — a lymph node in his neck had grown to the size of a baseball one month earlier — hearing the doctor spell out the prognosis was something new. It clouded my mind and tightened my chest. In that heavy moment, when I looked at Tijn, I suddenly felt a new kind of love and responsibility toward him and our future. I had been his lover, best friend, and wife. Now, I was also his primary caregiver. I made a pact with myself that, no matter what, I would remain strong and dedicate all of my positivity to his recovery. There was also the option of joining a clinical trial on a new chemotherapy regimen known as EPOCH-Rituximab. The 193 people who were already enrolled in the trial were already showing signs of improvement, and treatment hadn’t been associated with the same severity or long durations in the hospital as other treatments. The choice to participate was pretty easy. Tijn would receive six to eight cycles of the therapy. We quickly informed our wedding guests and vendors that the wedding was off or, at least as we hoped, postponed. We canceled our flights and planned new ones for our Dutch family to visit over the course of the next six months, all while trying to adapt to our new reality. Tijn got the diagnosis on a Wednesday morning in early September. On Friday of the same week, he received his first dose of chemotherapy. Being a caregiver for my husband during a time when the puzzle pieces of our lives felt like they were finally coming together is something that I’m still grappling with today — and, in many ways, so is Tijn. Through the upheaval and changes, what remained was our steadfast conviction that he would survive, as would our love. We put aside our anger with the unfairness of it all. I’ve learned a lot along the way, some things that I can articulate and others that I can’t. My ultimate hope is to share my experience as a way of helping other caregivers with their own journeys. Here are some of the lessons that I’ve learned as a caregiver.
Don’t Be a Hero
When dealing with something as frightening as cancer, I needed to be a realist and embrace feeling vulnerable — for myself, for the person I was caring for, and for my family and friends. I learned to give in to feelings of helplessness, and trust in the expertise of our doctors. By giving in to the treatment and all the risks and hardships that came with it, I could let go of some of frustrations and anger.
Have a Pie Week
Tijn’s treatment consisted of three-week cycles. In week one, he received outpatient chemo through an intravenous catheter that stayed in place during treatment. In week two, he felt like crap. Week three, he slowly began to recover, knowing that one week later, the cycle would start all over again. This could be defeating, so we decided to celebrate the small steps toward recovery along the way. We started to refer to the stages of the chemotherapy cycle as Cocktail Week, Hangover Week, and Pie Week. Tijn loves pie. When his appetite returned in week three, I would pick up a pie and together we would celebrate this achievement, forks in hand — a small, sweet treat that took some of the bitterness away.
Always Ask Questions
Caregiving often feels like being a confidante, copilot, and project manager all rolled into one. I was by my husband’s side every step of the way, witnessing his physical challenges and often experiencing my own emotional challenges. While I could not control the situation, I could do my best to understand by asking questions — lots of questions. I found trust in the expertise of the doctors and nurses while also thinking critically, gaining knowledge, and becoming informed. I made sure to read about the pills that Tijn took alongside the chemo. I memorized the name and purpose of every pill, the amount he had to take, and the amount that he had already taken, in case we faced an ER visit, which we did more than once. It felt empowering. I was able to communicate effectively with our doctors and nurses and take a bit of pressure off of Tijn, so he didn’t have to remember these things himself. Chemo brain is real.
Put On Your Own Oxygen Mask First
As the flight attendants say, put on your own oxygen mask first before assisting others. This was the hardest lesson for me to learn: To prioritize self-care, set boundaries, and ask for help from others. Caregiving can lead to burnout. My burnout could’ve been much worse without the support of our friends, family, and everyone at MSKCC. I learned to appreciate help from others and be comfortable with asking for help in specific ways, such as asking people to pick up groceries, motivate me to exercise, and come over simply to chat. It was important to give myself a break during treatment, and especially after the chemo ended.
Coping Doesn’t Stop When the Chemo Stops
Tijn received his last dose of chemo on December 30, 2016, just in time for us to celebrate the new year. Two weeks later, we received the good news that he was officially cancer-free. We exhaled a big sigh of relief and quickly jumped headfirst into our old “normal routines.” I started to work in overdrive, and so did he — in our professional lives and in planning our wedding. It wasn’t until we walked down the aisle after our wedding ceremony in Italy the following September, one year after Tijn received his diagnosis, that I finally let myself feel. For the first time that year, I cried without reserve. A few days later, from the top of a mountain in Lake Cuomo, I screamed as loudly as I could. Crying and screaming were cathartic, if only briefly. They were small steps toward my ongoing journey to be kinder to and more patient with myself, to give in to being vulnerable, and to appreciate the power of community. Caregiving didn’t stop when the chemo stopped. The experience forever shaped my relationship with my husband and with myself — it proved that kindness, trust, openness, and community are often our most powerful tools in life.
Giving Back Is Healing
In a few weeks, for the second year in a row, we’re riding to raise money for Cycle for Survival, the movement to beat rare cancers. We love this cause for two reasons: Every dollar raises funds for innovative studies and clinical trials led by MSKCC, just like the one that helped to save my husband; and it embodies the power of community. The moment you walk into Equinox, the gym where the events are held, you feel an incredible energy. I want to give thanks to the brilliant people at MSKCC, without whom our fortunate outcome would not have been possible. Funding cancer research is one way to do that. It’s has now been two years since Tijn has been cancer-free. He’s officially reached the survivorship stage, just in time to welcome our first child, a baby girl, this July. We’re now doing our part in helping to make more of these positive stories possible, and we hope that many people will join us.
