Cathy's Story: Standing at the Starting Line

In May 2021, a routine mammogram unexpectedly changed the course of my life when it revealed an enlarged lymph node. I initially thought little of it — I had recently received a COVID vaccine, and I had experienced an enlarged lymph node years before that turned out to be nothing. Thankfully, the radiologist wasn’t willing to make that assumption and insisted on a biopsy. While waiting for the results, I developed excruciating abdominal pain and a dangerously high fever. I ended up in the ER and was diagnosed with severe diverticulitis, a tear in my colon, and sepsis. While lying in the hospital, frightened that I might not survive the infection, the surgeon who had performed my biopsy came in with another piece of news: the biopsy showed mantle cell lymphoma. He tried to reassure me that lymphoma was a very treatable cancer, but when I looked it up myself, the information I found made MCL sound rare, incurable, and terrifying. Lying alone in that hospital room, I suddenly found myself staring directly at my own mortality. I was overwhelmed with grief and kept thinking, “Why me?” I had just buried my mother, welcomed my first grandchild, and felt like I was finally entering a new and exciting chapter of my life after raising three daughters. I simply wasn’t ready for cancer to become part of my story.

Then I found an article by Dr. Michael Wang at MD Anderson discussing the advances being made in mantle cell lymphoma. That article became a turning point. I learned how important it could be to seek a second opinion at a major lymphoma center before beginning treatment. As a social worker myself, I immediately went into advocacy mode. I called MD Anderson, tracked down my patient representative, gathered my records, and worked with the hospital to have my biopsy tissue sent to Houston. I was determined to get there. Eventually, I met Dr. Jain, and his reassurance changed everything. I learned that I had an indolent, leukemic form of MCL and that, rather than starting treatment immediately, I could be monitored through watch and wait. What I didn’t know at the beginning of this journey was how much I would learn, how many people I would meet, and how profoundly this diagnosis would change my perspective on life. One of the greatest gifts along the way was discovering the MCL Journey community. I found “my people” — people willing to share their experiences, treatments, doctors, fears, victories, and hard-earned wisdom. Their stories became my research clues, my encouragement, and often my lifeline.

After nearly five years of watch and wait, my once-stable labs began changing, and recent imaging and testing now suggest that it is time for me to begin treatment. I also recently faced the unexpected loss of Dr. Jain as my oncologist at MD Anderson (Texas Medical Center, Houston), just as I was approaching one of the biggest treatment decisions of my journey. Navigating a new doctor, new questions, and the uncertainty of what comes next has been difficult. But once again, I turned to this community, and once again, you showed up for me. I have listened to your stories, watched your videos, learned about today’s treatment options, and gained courage from those of you who have already walked this road. So here I am — five years after hearing the words “mantle cell lymphoma,” standing at the starting line of my treatment journey. I’m anxious, hopeful, and determined to walk this next chapter with my chin held high. It’s my turn at bat. I hope to come back and share the next part of my story with you — and someday, I hope that chapter will say, “I’m in remission.” Until then, I am grateful beyond words to have found my people.