Kidney cancer caregiver: Advice for appreciating life with cancer

My dad was initially diagnosed with stage II kidney cancer in January 2002. But the tumor in his kidney was contained, and surgery successfully removed the cancer. He remained cancer-free for 13 years.

Things changed in July 2015, when he coughed up a teaspoon of blood. He went to the doctor and underwent an X-ray that revealed multiple spots on his lungs. Additional CT scans confirmed the spots. His doctor referred him to MD Anderson. Though my dad was very scared, he was eager to get some clarity on his diagnosis and plan his treatment.

My dad’s second kidney cancer diagnosis

After he underwent additional testing at MD Anderson, he was diagnosed with stage IV renal cell carcinoma, the most common type of kidney cancer. Our family was devastated. My dad had no symptoms other than the one occurrence of coughing up blood.

Our family has accompanied him to many doctors’ appointments, tests and even attended a few pity parties. I struggled quite a bit with trying to find new meaning after his diagnosis.

My dad is currently participating in an immunotherapy clinical trial that uses an experimental drug called NKTR-214 in combination with nivolumab, under the care of Adi Diab, M.D. This is actually my dad’s second clinical trial. Prior to this one, he was on a different one under the care of Nizar Tannir, M.D. That clinical trial showed great initial results – shrinkage of the tumors in his lungs!

As we go through his treatment and wait to see what happens next, I find it’s a struggle some days to reconcile what I imagined life would be like vs. the reality of life.

Here are a few things I’ve found helpful while navigating this journey.

Create rituals

This can be as simple as having a cup of coffee with your loved one on a certain day of the week. As I write this, it is Thursday -- the day I usually stop by my parents’ house on the way home from work to have a cup of coffee. I call my dad from the car, and he immediately responds, “I’ll start the coffee now!”

Express gratitude

When my dad started the new immunotherapy trial, I worked with a high school friend to create special cookies in the shape of nurses, doctors and kidneys. I surprised him with the box and told him they were for him to pass out to whomever he wanted on this care team. His expression went from worry to absolute delight. On top of that, it felt good to make someone smile.

Gratitude can even be as simple as writing a note of appreciation to someone special.

Find someone to talk to

Cancer is hard on the patient, the family, friends and loved ones. I struggled with a major depressive episode last year and thought things would never get better. I reached out and asked for help, started going to therapy and talking about my feelings with people I trusted.

Before I started seeing my therapist, I’d had this idea that I needed to hold my emotions in to be strong. But holding them in prevented me from truly experiencing each moment as it happened. Even if those moments are sad, it’s OK to talk about it -- with a therapist, clergy, friend or anyone you trust. It’s even OK to talk to yourself! Whenever I start to feel overwhelmed, sometimes I stop and tell myself “I love you. I am listening.” The cancer journey can be a tough road to walk down, especially when the start is not of our choosing. But we can choose how we cope. As I’ve learned, it’s important to find what works best for you.

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