“Life of a Specimen” video series details the journey patient specimens take through advanced laboratory testing. Whether arriving for testing at our labs in Rochester, Minnesota; Jacksonville, Florida; or Scottsdale, Arizona, specimens are treated with the same level of care and respect provided to Mayo Clinic patients. We’re rooted in Mayo Clinic’s primary value that the needs of the patient come first, and it is those patients who drive our commitment to testing excellence.

The fifth episode in our series highlights Joy Carol’s journey through treatment and her ongoing rehabilitation. Identification of specific antibodies in her blood and cerebrospinal fluid through Mayo Clinic Laboratories testing helped her care team understand the mechanism of her disease process. Moreover, it enabled targeted treatment that helped her reclaim her life.  

Something to live for

Born into a loving family in rural Nebraska, Joy Carol was raised to appreciate nature, believe in God, and help others. Her parents also instilled in her a passion for life that is a core component of who she is.

“My family gave me that kind of feeling about life, it’s worth living. I want to live, and I'm going to live as long as I can,” says Joy, who is 85.

Her parents also nurtured her thirst for knowledge. Her home in Penney Farms, Florida, is filled with books, and she has authored or co-authored nine of her own.

“I'm a person who really wants to know, I want information,” Joy says. “I don't want to go without knowing what's going on. My dad always told me, ‘Ask more questions. If you don't know the answer, find somebody who might know.’”

That philosophy kept her motivated to push for answers throughout her 2013 medical ordeal when a paraneoplastic neuroautoimmune disorder almost took her life.

“I believe in testing because information is power,” Joy says. “And anyone who says, ‘I don’t want to have a test done,’ I think is foolish. You’re wise if you say, ‘I am ready to find out, and then let’s see what we can do.”

When the usual tests performed on Joy did not yield answers, a member of her New York City medical team sought outside help and sent Joy’s specimen to Mayo Clinic Laboratories.

“A couple of her original physicians with perseverance found the right test,” says Joy’s neurologist Kurt Jaeckle, M.D., emeritus professor of neurology at Mayo Clinic. “It completely reversed the whole situation with respect to her medical condition. I think that she might not be alive if that test had not been done. That's how powerful it was in this situation.”

A slow, uphill climb

When Joy learned the specific reason for her body’s sudden decline — a paraneoplastic autoimmune disorder identified by Mayo Clinic Laboratories antibody testing — and that treatment was available, she gratefully embraced therapy.

The first stage of her treatment involved surgical removal of the breast cancer and affected lymph nodes. As soon as she’d recovered from surgery, Joy underwent chemotherapy and radiation to target the remaining cancer cells.

Next, because the antibodies in her immune system continued their affront on her nerve cells, Joy underwent plasmapheresis to remove the harmful proteins from her blood. But that process, which entails removing the blood, cleaning it by spinning it through a centrifuge to separate and remove the antibodies, and then reinserting it, failed to improve her symptoms.

As a next step, Joys’ New York healthcare team started her on Rituxan, a biologic drug with the ability to interfere with the body’s immune response. The aggressive therapy was delivered slowly via infusion over the course of many hours to prevent side effects that could be fatal to Joy given her diminished state.

“I was on Rituxan for five weeks before I started to be able to turn over in bed, so that was really the beginning of my new life,” Joy says.

During one of Joy’s frequent appointments with her New York City neurological team in the months following diagnosis, she learned about a physician who specialized in paraneoplastic autoimmune disorders who was willing to treat her. That doctor was Kurt Jaeckle, M.D.

“When I was told there was a doctor at Mayo Clinic in Florida that knew something about this illness and might be able to treat me, I finally decided I needed to leave my beloved New York,” Joy says. “And I left everything. I gave things away. I sold my apartment. I only took my easy chair, a few clothes, a few books, some tchotchkes, and I came to Florida to be close to Mayo Clinic.”

When Dr. Jaeckle first met Joy, she was on her road to recovery. Her breathing ability and ability to talk were returning to baseline, but she continued to struggle with walking and controlling her arms.

“There was quite a lot to do in terms of just her mobility and getting her to walk normally and up on her own two feet — that had not gotten to where it could be,” Dr. Jaeckle says.

Never give up

Little by little, with ongoing physical therapy, Joy began to heal.

“Of course, I have this spirit that was not going to ever give up,” Joy says. “I was so scrawny I couldn’t even lift up a one-pound weight.”

Eventually, Joy regained enough strength to stand and move her legs.

“What I’ve seen happen over the years is that with constant therapy, she’s made it back,” Dr. Jaeckle says. “She uses some assistance with devices that help her walk, but in all honesty, she can even walk a few steps on her own. She was bedbound when she started with me. I’ve seen that recovery over the last 10 years to where she’s gotten to do things all on her own.”

Not long after transitioning care to Dr. Jaeckle, Joy stopped taking the Rituxan and began steroid therapy. Administered every other month, the treatment’s side effects are much more manageable.

The resilience Joy has exuded throughout her medical journey has been impressive, Dr. Jaeckle says. “Her fortitude in dealing with this, she does these exercises at home on her own without provocation. She doesn't need anyone to encourage her, she does that herself. She doesn’t let anything stop her. She comes alone to the clinic and is taking trips overseas, and things that I might not do myself, so it’s quite surprising.”

The strength Joy has shown in reclaiming her life is rooted in another lesson her parents taught her.

“I have a sign on my refrigerator door, which says, Falling down is part of life. Getting up is living,” Joy says. “And then I have the sign, of course, Never, never, never give up, which my father always told me too.”

An ongoing testing journey

As part of Joy’s care, she receives laboratory testing several times each year to check her antibody levels and cancer status.

“In this situation, the antibodies are measurable in certain amounts in the bloodstream, and if you see a drop in the antibody titer that means you’re in the right direction,” Dr. Jaeckle says. “Whereas if it’s going up, you’re going in the wrong direction or the tumor is back.”

For many years Joy’s antibodies have been undetectable. “They’re gone, but if it were to rise again, we would be suspicious and we would start looking for the cancer,” Dr. Jaeckle says.

Because the condition will be with her for the rest of her life, Joy relies on testing to know if her illness is advancing.

“I can’t imagine not testing and seeing where I stand, how my antibodies are doing, how my blood is doing, how the treatments I am getting might have an impact on some of my vital organs,” Joy says. “It all fits together and I believe that is why I am doing so well. So poke me, X-ray me, do whatever you need to because it is the way I will be a happy, healthy patient.”

For patients like Joy, laboratory testing is crucial to providing the best possible patient care.

“I don’t think we could function nearly as well without the testing,” Dr. Jaeckle says. “It has to be used properly and judiciously, but when used in that fashion, it becomes very powerful in assisting us with not only making a diagnosis, but also monitoring the response to therapy. I don’t know how you could get by without that type of testing and take care of people properly.”

Moving into the future with gratitude

Supported by her Mayo Clinic team, Joy continues to feel well and has no plans to slow down.

“Life is not always easy, it can be very difficult — it has been for me — but I still say I am going to find something in my life that is worth living for.”

For Joy, that means continuing to be involved in her community: singing with her choir, preaching in her church, gardening in her backyard, traveling, and visiting friends.

“I’m one of these people who has endless energy and as long as I am alive, I will be involved in something,” Joy says. “There is no way I am going to just be sitting there watching television or playing cards — I am going to be doing something that’s meaningful for me and hopefully for others. I really know as long as I have hope and I can still plant one flower in my garden and I'm still feeding the hummingbirds in my backyard and I can still sing, I have something to live for.”

View all episodes of “Life of a Specimen.”