Young adult caregiver: What my wife’s cancer experience taught me

When you’re a young adult dealing with a cancer diagnosis, you realize that planning for the future is a luxury. However, as my wife Suzie taught me throughout her time living with cancer, joy can be found in the most unlikely of places.

Suzie was only 26 when she was diagnosed with a rare head and neck cancer in 2017. Even though she was living with metastatic disease, she cherished every day that was hers to live. Whether that meant jumping in an RV to spend a week at a festival in the desert, or building her own greeting card business during hospice care, she never let her pain or discomfort get in the way of doing what she loved.

Despite the challenges we faced during Suzie’s treatment, she taught me to be grateful for even the smallest things and savor every moment we had together.

Headaches lead to cancer diagnosis

Suzie and I first met at a college bar in Gainesville, Florida, where, during college, she worked as a waitress and I as the DJ. She was the type of person you just wanted to be around -- wise beyond her years, compassionate, and sassy when she wanted to be. After moving to New Zealand together and getting engaged, we got married and settled in Boulder, Colorado, where Suzie began her nursing career in an OB/GYN clinic.

While she was studying to become a nurse practitioner in October 2017, Suzie started experiencing painful headaches. We thought they were caused by the stress of the program or uncomfortable office furniture. But after two weeks with no relief, she talked to her doctor and scheduled an MRI.

Before we had a chance to get the MRI, Suzie suddenly experienced double vision and went to the ER to get checked out. A CT scan revealed a mass in Suzie’s clivus bone, extending from the base of her skull to her nasopharynx.

Suzie had a feeling the headaches were a sign of something more serious. We even had a conversation about how we would break the news to our families if the MRI revealed a tumor. But nothing prepared us for the moment we officially learned about the tumor. That was one of the most stressful days of our lives.

Genomic profiling results lead to clinical trial MD Anderson

From there we hit the ground running researching cancer centers and treatment options. We traveled to Pennsylvania for initial biopsy and surgery. That’s when we learned Suzie’s official diagnosis: metastatic adenoid cystic carcinoma, a rare and aggressive glandular cancer.

Through the recommendation of an organization specific to Suzie’s cancer, we learned about proton therapy and sought treatment at a cancer center in Massachusetts. At the same time, we sent tissue from Suzie’s tumor for genomic profiling. The results came back that her tumor was caused by a mutation in the NOTCH gene.

Our research led us to a clinical trial led by Dr. Renata Ferrarotto at MD Anderson that was testing NOTCH inhibitors. We moved to Houston so Suzie could participate. We have Dr. Ferrarotto to thank for giving Suzie nearly a year without any further disease progression, which is huge when you're living with metastatic cancer.

Because she worked in the medical field, Suzie was extremely well-informed about her disease, but she made clear she didn’t want to know her prognosis. Because she did her homework researching treatment options, she joked about being an intimidating patient. I think her providers appreciated the fact that she took so much initiative for her care and asked so many questions.

Finding support in the young adult cancer community

While Suzie was in treatment, her health and happiness were my top priority. I admit that meant putting my needs on the back burner, but there were a few things I did to take care of myself to make sure I could take care of her.

Each day I woke up early to work out or practice yoga. That helped me start my day with more energy and boosted my mental health. On days I didn’t feel up to it, I reminded myself to try again the next day.

Although I had great support from friends and family, I found myself sometimes putting a positive spin on things to avoid causing others pain or stress. At the time, I was in my early 30s, and most of my friends were having children and purchasing homes. It was hard to find people who understood what I was going through.

Through MD Anderson’s young adult caregiver support groups, I found a community of people close to my age who were dealing with the unique hardships that come with caring for a spouse or partner with cancer. I found it was easier to be vulnerable with this community since they could relate. When the COVID-19 pandemic hit, and in-person support groups were no longer safe, I stayed connected virtually.

Suzie also dedicated time to connect with the adolescent and young adult cancer community.  She was a great role model to other young adults living with cancer and frequently contributed to guided discussions and support forums.

Transitioning into hospice care

In April 2020, Suzie’s scans showed the adenoid cystic carcinoma was progressing rapidly. Her breathing was becoming more difficult, and she was in a lot of pain from the tumor pressing on her spine.

Because Suzie didn’t want to discuss her prognosis, Dr. Ferrarotto called me to discuss transitioning to hospice care. Although this was a really hard decision, it was the right one because it gave Suzie the best quality of life possible.

In true Suzie fashion, she approached hospice with optimism. She even called it a luxury experience. No more waiting for appointments, no more uncomfortable drives in Houston traffic. She spent the last month of her life keeping in touch with loved ones, catching up on Netflix and making greeting cards when she had the energy.

Honoring Suzie’s wishes by planning her memorial together

Suzie’s philosophy was about living in the present, and frankly, conversations about the end of life were so hard that we said, “We’ll talk about that when we get there, but we’re not there yet.”

So, I take it as a stroke of chance that we ended up planning Suzie’s funeral together before she passed away. In March 2020, we attended the funeral of a dear friend we met through the support community. Suzie was so inspired by the loving memorial service that on the ride home, she shared with me every detail she eventually wanted in her own funeral.

Suzie passed away peacefully in May 2020. When COVID-19 restrictions allow, I’ll plan her memorial service according to her wishes.

Ensuring Suzie’s legacy lives on

My focus now is making sure Suzie’s legacy lives on. I am keeping up with her card business, which has seen thousands of customers from all over the world, including Indonesia and New Zealand. At Suzie’s request, proceeds are donated to cancer research and the young adult cancer community. 

One of the best pieces of advice I learned after Suzie’s diagnosis was to appreciate the good times as much as possible. Because during cancer treatment, things can change quickly and unexpectedly. Live in the moment. Be grateful for even the smallest things, and enjoy life.

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