'I had this monster that was in me': Coping with fear of relapse

March 20, 2017 | by Stephanie Smith

Donna McNutt knows the precise number of myeloma molecules in her bone marrow right now. “Nineteen molecules for every 1 million cells,” she said — a tiny fraction compared to her marrow a year-and-a-half ago, which was so thick with cancer, four of her bones shattered.
Myeloma Series Part 1 McNutt Donna McNutt today
She knows the tenths of a point that separate a healthy kidney from a failing one — the small shift in certain proteins that could transform her from a healthy 56-year-old in remission, back to a multiple myeloma patient.

“I have had cancer,” said McNutt, sitting on a bench on the City of Hope campus on a breezy day in November. “I had this monster that was in me and I will always live with the reality that it could come back.”

On this day, minutes before an appointment with her oncologist, Amrita Krishnan, M.D., that dim prospect is weighing on McNutt. Relapse is one of the most common fears among cancer patients. Nearly 60 percent of cancer survivors are moderately-to-severely concerned about recurrence one year after remission, according to data from the American Cancer Society's Studies of Cancer Survivors.

“In many cases there’s not a normal arc of, you get a horrible diagnosis that’s life-threatening and then if you’re lucky, you finish treatment and it never comes back,” said Marissa Cangin, Psy.D., a clinical health psychologist in the Department of Supportive Care Medicine at City of Hope.

“There are so many things that happen in between, and even when you are celebrating there can be this voice inside screaming, ‘What if?’”

A few weeks prior to that November day, McNutt, who by that point had been in remission for a year, got a call about lab test results. “I had my labs on a Thursday and my phone rang on a Saturday,” said McNutt. “It was Dr. Krishnan. I thought, ‘Why is Dr. Krishnan calling me on a Saturday?’

“She said, ‘Donna, the rest of your labs have come in and there’s some concern.’”

Normally upbeat and exceedingly positive — she is quick to quip and smiles easily — McNutt had a dim sense, although she felt healthy, that cancer was creeping back.

“When I get one of those tests, I’m consumed with it again,” she said. “And I hate that part of it.”

Tests revealed elevated levels of light chain proteins and a substance called creatinine. These could be fleeting problems, symptoms of a mild infection or they could mean the myeloma had returned.

During the weeks following the tests McNutt went from happy and whole to hypervigilant.

“Literally every time I went to the restroom I’m checking my urine to see if it had too much foam,” said McNutt, referring to a possible sign her kidneys weren’t functioning properly. “I go to yoga and I’m like, ‘Do I have bruises?’”

Cangin said mild anxiety and fear of relapse can be important parts of the cancer journey. They are much healthier than denial and can function as “teachable moments” that may motivate healthy behaviors.
Myeloma Series _ Cangin_White BG Marissa Cangin, Psy.D.
But sometimes, as in McNutt’s case, healthy fear metastasizes to something worse.

“I call it consuming fear, where every ache and pain creates the thought that, ‘Uh oh, the cancer’s back,’” said Cangin.

In November, McNutt walked tentatively to her appointment with Krishnan, a hematologist-oncologist and director of the Multiple Myeloma Program at City of Hope. She would be getting results of a follow-up round of labs to see if her light chains and creatinine were still elevated.

McNutt, her face drawn, sat very still as she waited in the examination room. Moments later, Krishnan walked in.

The two exchanged pleasantries — “Hello, how have you been?” — but for McNutt, there was clear tension as she waited to get her new numbers. The database holding her results was slow to load. “Let me know when those tests are brought up,” she said, staring at the computer screen.

“Ah, here they are,” said Krishnan as the results finally appeared. “Your kidneys are point-nine. That’s fabulous. Better than they’ve been.”

At first, McNutt misunderstood. “Oh my god, a one-point-five to a one-point-nine?” she asked. An increase in creatinine would have been bad news.
Myeloma Series Part 2 McNutt Krishnan Amrita Krishnan, M.D.
“No, a point-nine now,” said Krishnan.

McNutt’s face brightened. Her light chains had remained level — also a positive sign.

“Wow,” she said. “You know, I had to hear this so badly.

“I don’t know if your other patients experience this but you hear something (bad) and you immediately think you’re a cancer patient again.”

“Well, I’m glad the (numbers are) good,” said Krishnan.

After a short exam, Krishnan left the room and McNutt collapsed with relief as she sat on the exam table. Bent over, holding her head in her hands, she sighed several times.

“I have no more excuses not to get out of bed,” she said. “Because, I’m not kidding, I have dragged the last month. My psyche’s been a little off.

“Now I can put this behind me. Go forward until the next teeny bump.”

Going forward includes focusing on simple things that make McNutt happy — volunteering, blogging about her experience, walking her dog through the cluster of boutiques down the hill from her home in Laguna Beach and traveling with her husband, Jack, and three children.

McNutt’s process sounds healthy, says Cangin (who is not her therapist) because she acknowledges her worry and anxiety then, when she resurfaces, she returns to things she values.

“With my patients, instead of saying, ‘Be positive,’ I use the language, ‘Focus on what you’re grateful for,’” said Cangin. “Focus on what, and who, you value because no cancer and no cancer treatment can ever take away your values.

“When you’re coping with uncertainty, if you can find something that grounds you, that helps everything to be much more tolerable.”

After her appointment with Krishnan, McNutt slowly unraveled her darker emotions and climbed back to a more hopeful space.

“I can cry. I can hurt. I can feel all those things, but I do get to make a choice,” said McNutt. “That choice is to be grateful for the day — to be grateful for every moment I get and to be grateful that there is even a medication that keeps me in remission.”

Stories of Hope is a monthly series that explores important issues in health care. During Multiple Myeloma Awareness Month we give an intimate look at one patient’s experience.

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