A year ago, I wrote a post for the LACNETS blog entitled Cancer Thriver. At the time, I felt like a thriver, enjoying the break from Cancerland my treatment afforded. I was one of the first patients at Cedars-Sinai Medical Center to receive Lutathera PRRT, which gifted me with four progression-free years. Every six months, my husband and I skipped out of Cedars waving our “Get Out of Jail Free” card. I say “our” because whatever happens to me, happens to him.
Seven months ago in March 2022, the dreaded “P” word haunted my MRI report: progression. “Irregular mesentery mass has mildly increased in size.” I knew this was inevitable, but it still felt like a gut punch. We decided no need for medical intervention yet, but the writing was on the wall.
Over the next six months, a mild sense of dread set in. On most days, I was able to argue it away. Eventually, the mental gymnastics wore me down. It wasn’t the kind of traumatic grief I experienced when I was first diagnosed. This was more like a low-grade foggy depression that came and went. I was able to function and even enjoy myself at times.
My mind often attributed everyday aches and pains to something more ominous. Gas pains were tumors. A pulled muscle was scar tissue forming. Stomach aches were pancreatitis. I started a “pain log” documenting the times, duration, and intensity of my discomforts. The log gave me peace of mind because I would have documentation for the doctor if needed. Also, the act of writing it down felt like it gave it validity. Nothing ever materialized into anything of significance, just little gnat-like thoughts buzzing in the background.
Family events were also tainted by the fog. There’s a photo where I’m posing with my youngest daughter on the day of her “short coat” ceremony when she was initiated into a physician assistant program. I smile proudly, my arm wrapped around my high-achieving twenty-six-year-old. One part of me says, “You made it to see Aubree embark on her career!” Another part argues, “But what about her wedding day? Or the birth of her first child?” This bittersweet ebb and flow carried me back and forth between joy and grief.
While most teachers live for summer vacations, this year was different. The calendar was inching towards September scans and without the distraction of work, I had more time to ruminate. My husband, middle daughter, and I decided we needed a vacation.
We booked a trip to Wisconsin to visit family, including my ninety-six-year-old grandma. Grandma Elly is a character! She squealed with delight when my daughter and I surprised her at her little white house. A quintessential grandma house, it’s remained the same for as long as I can remember—a pink bathroom that smells like Dove soap, blue shag carpet, and end tables overflowing with family photos. Grandma fluttered around her white wig askew, dramatizing the story behind each photo. Suddenly, she stopped and grabbed my wrists with her translucent hands. Her mint green eyes sparkled and filled with tears as she said in a deep, wise voice, “Oh Kelli, I prayed and I prayed. You told me all you wanted was to see your three little kids grow up.” Then she pointed to my beautiful twenty-nine-year-old daughter, with matching green eyes, and squealed, “And now, look!” She grabbed both of us around the neck for a long hug.
After letting go, her face lit up with insight. “Now, Kelli, we’re gonna pray for grandkids. You need to see your grandkids.” Then she pointed to my daughter Cassidy.
Cassidy’s face contorted, “No way, grandma! I’m not even married.” That’s when Grandma pretended not to hear. For the next ten minutes, she chased Cassidy trying to pray for her, while Cassidy ran away to dodge the prayers, yelling in protest. She knew how powerful Grandma’s prayers were.
Finally, after a lot of loud explaining and gesturing, we convinced Grandma to pray for my son Blake and his wife Norma because they had been married for a year and wanted a baby. Grandma finally understood, and the three of us stood in a circle and held hands. Grandma Elly’s voice turned serious as she prayed that I would have grandchildren and get to see them grow up. Her words caused me to weep.
Is it okay to hope? Is it okay to dream of a narrative that isn’t really logically or scientifically probable? I have to go back to my favorite book Man’s Search for Meaning by Viktor Frankl. Here is his distilled truth: Even in the most intense suffering, we have a choice to make meaning. Meaning is derived from the hope of a future. No matter what the odds, all have the right to dream of a future in which we are fulfilled and carrying out our destiny. If Viktor Frankl can survive the loss of his wife and bear witness to unthinkable atrocities to write a book that would change the trajectory of psychiatry, then I can choose to imagine a future in which I have grandchildren and get to see them grow up.
When we returned home, my husband and I started counseling. I remembered how much it had helped when I was initially diagnosed. My husband is sixty-one and retired. I’m fifty-seven and still have a few more years to enjoy my profession. We are at that stage when we need to set up a trust and discuss our long-term financial plans. Yet, whenever we try, one or both of us chokes up. It’s unbearable for us to plan any future beyond an impending scan.
Our counselor teared up when we told her how we live in six-month increments. She was shocked at how we even functioned. At this, we cried—not tears of sadness as much as tears of validation. We hadn’t acknowledged the toll this burden had taken and how it colored every decision in our lives.
As the weeks progressed, we shared how we didn’t feel comfortable sharing our deepest fears with each other. I didn’t want to burden my husband and he didn’t want to say anything that may make me give up. With this out in the open, we were able to formally give each other permission to share our dark feelings when they come.
I tried it first. We were in San Francisco, our version of Disneyland, when I noticed a pain in my side. It reminded me of the dull ache I had prior to my PRRT. Normally, I would have kept this concealed because I wouldn’t want to put a damper on our vacation and, more importantly, I wouldn’t want to worry my husband.
Nevertheless, I thought I’d give it a try. My husband was able to validate my worries without getting sucked in himself. It turns out that our low spots tend to happen at different times. So, one of us is usually strong enough to play the role of supporter. Instead of hitting the town that night, we hung out in our room and watched Dream House Renovation on Netflix. Slowly, the pain dissipated and we were able to enjoy the rest of our stay.
A few weeks ago, the six-month scan timeline reared its ugly head. This time, many of the tumors had increased. “Four years is a very good run for PRRT,” my oncologist said.
I thought to myself, “not nearly long enough.” My husband and I cried together on and off for days. I numbed my torturing thoughts with nostalgic movies like Saturday Night Fever and its pathetic sequel, Stayin’ Alive. My husband and daughter brought me bowls of soup followed by bigger bowls of cookie dough ice cream.
I prayed, “God, how in the heck are you going to get me out of this one?” Then I remembered my LACNETS community and reached out to Lisa Yen (Director of Programs & Outreach). I realized that while I’m a patient mentor, as part of the NETCONNECT team, I’m still a patient myself. Sometimes I need mentoring. After networking with the worldwide NET community, Lisa had advice and encouragement and some promising options I didn’t know about. My other LACNETS friends reached out to me, as well, with encouragement and validation. In moments of fear and questioning, I know they will be there for me.
So far, my grandma’s prayers still seem to hold their power. My son and daughter-in-law are having a baby—my granddaughter. I will get to hold her and tell her how much I love her when she arrives in March. There are no guarantees about how long I will get to be in her life, but while I’m on this earth, I’ll breathe all my wisdom and love into her. I rest in the knowledge that she will always be surrounded by a huge family that will adore her.
If you Google the word “thrive,” an image of a green plant wrestling its way through a crack in the concrete comes up. Even when there are times I don’t feel like I’m thriving, I’m still going to make the decision to be a cancer thriver…no matter what.
Written by Kelli Devan Edwards,
NET Patient, NETCONNECT Mentor