medical anthropology

Medical Anthropology Illness narrative student sample

Beautifully and Wonderfully Made

December 21, 2013, is the anniversary of a day that Paige can’t remember. In fact, she

can’t remember a full two weeks after this day, as she was in a medically induced slumber.

Concerned family watched as she lay in isolation, hallucinating and tossing and turning, her

blood count plummeting. Today, she enthusiastically announces this day as her “re-birthday.”

Paige, 52, her husband, and her three adult daughters live in Hemet, California. She

addresses her family’s illnesses with a holistic attitude, viewing diet, exercise, and spirituality as

having as much healing potential as pharmaceutical drugs. She values doctors who share this

perspective, yet who are also aggressive and candid. Her approach to medicine reflects a union

between the Western biomedical model and the growing trend of favoring natural and organic

remedies seen among the upper/middle-class public. Until the summer of 2008, she was

unaware of just how much these professional qualities would mean to her.

Summer was vacation time when Paige worked at a local public school. Yet, as a self-

described “Type A personality,” she liked to keep herself busy with other activities. However,

Paige soon became aware that she was unusually tired and requested a blood test from her

doctor. The results came back that she was intensely anemic. She was given a prescription and

changed her diet to include iron-rich foods.

By July, she had developed a painful lump on the back of her right knee, which was

diagnosed as a torn muscle. But the lump was still there when school started in August. While

supervising a detention class, Paige stood up from her seat, heard a popping noise, and

collapsed to the ground. By the time a student had gotten help, her knee had swollen to three

times its original size. Managing the pain long enough to wait for a friend to drive her to the

hospital, Paige received an MRI and a leg brace on the assumption that she had torn her ACL.

Two days later, she received a phone call from her doctor requesting an immediate

appointment. He would even keep the office open late until Paige and her husband were

Medical Anthropology Illness narrative student sample

available. It just had to be that day. That night, they were told that the MRI revealed

deterioration in the bones of her knees. Taken with her anemia, these were signs of bone

cancer.

Two weeks after a referral to a hematologist and a bone marrow biopsy, she was

diagnosed with myelofibrosis with pernicious anemia, a serious and rare bone marrow cancer.

The hematologist explained to her that the bone marrow is like a blood factory, and Paige’s was

so scarred that it wasn’t producing any. Her body was a machine with a broken part. An

abnormal blood-producing stem cell had multiplied and replaced the bone marrow with scar

tissue. Paige’s illness, the simple experiences of lethargy and a swollen knee, had become an

alarming, life-threatening disease.

At the time, the only thing Paige and her doctors could do was treat the symptoms. She

was given steroids and medications for the pain and swelling. She had to quit exercising, a

practice she enjoyed and valued holistically as an element of health, because the pain was too

acute. Her anemia kept her constantly tired. Other symptoms arose. Her spleen began to swell--

it had taken on the job of producing blood. Because her spleen was preoccupied, Paige’s body

couldn’t fight off infection as well and she was prescribed more medication to counter this.

Despite the drugs, she developed severe mouth infections and her teeth began to fall out as the

bones decayed. Today, only about six of her teeth are real. She was dissatisfied with her

treatment and was disappointed that her doctors not only wouldn’t consider, but were dismissive

of alternative treatments, such as diet changes to improve her quality of life. Throughout these

trials, Paige continued to work, as accustomed to the busyness as she was.

In 2012, an experimental new chemotherapeutic “miracle” drug was approved by the

FDA, called ruxolitinib (trade name Jakafi). There were high-risk side effects, including extreme

anemia. Given she was already anemic, this gave Paige pause. But within a few weeks, she

had improved. She had more energy, was less achy, and her spleen had shrunk. But this

reprieve didn’t last long.

Medical Anthropology Illness narrative student sample

Three months later, Paige needed her first blood transfusion. She had begun to feel

unwell again and her blood count had plunged, but this new procedure was frightening to her. It

was unfamiliar and it meant that her treatment wasn’t working. Soon the transfusions would

become commonplace; she would need another one about once every month for the next

eighteen months. And the transfusions came with their own set of problems. This new blood

was 90% synthetic, causing her liver to swell and her iron (ferritin) levels to soar. A healthy

person’s ferritin level is under 200 ng/mL-- Paige’s was at 5,000 ng/mL. Her skin took on a

yellow tinge and she was prescribed another drug, this one called XJ, to remove the excess

ferritin. It took a toll on her work life when, every day after her morning dose, she had to remain

in the bathroom for several hours, passing the ferritin.

Paige’s body was like a gas tank, only stuck at half-full. This was how her doctors

explained it to her. She was a machine perpetually needing fuel. The Jakafi she took daily to

cure her, depleted her “tank” to empty and the transfusions could only bring her back to half-full.

This iatrogenic paradox of the medicine making her sick was part of Paige’s life for eighteen

months and early on it forced her to finally make the decision to leave work. She had to use her

“fuel” wisely, and she wanted to spend it on her family.

All of a sudden, Paige had a lot more time on her hands. What time wasn’t spent

sleeping, was spent with her family or God. As Christians, the family grew closer together as

they looked to their God, in addition to therapy, for comfort and solutions. Family and friends

supported and took care of Paige through these difficult months. Paige wasn’t scared, though,

because she trusted God. After spending time strengthening her faith, she asked Him, “God, will

you heal me? I’m tired now. I don’t want this anymore.” It was then that Paige believes that she

began the journey back to health.

Her oncologist at City of Hope recommended her for a stem cell transplant. Within

weeks she had an astonishing four perfect bone marrow matches. Six months later, almost two

years after starting Jakafi, she was checked into the hospital for the procedure. Five days of

Medical Anthropology Illness narrative student sample

chemotherapy to kill her cancerous bone marrow cells, which were then replaced with the

healthy cells of a forty-year-old male donor. One hundred and thirty five days of isolation after

December 21, 2013, a bone marrow biopsy declared her 100% free of cancer.

Now, Paige has been in complete remission for very nearly a year and a half. She is

Relay for Life’s “Hero of Hope”; she gives speeches with the hope of inspiring, providing

information, and helping others. Her disease has made her view illness in a more positive light.

She believes taking on the sick role is an opportunity to re-prioritize and to better understand

life. Paige tells her story often. Her explanatory model is half science, half faith. Is it the placebo

effect-- simple optimism-- that allowed her to advocate for herself, drive the events of her

treatment forward, and heal? Or something bigger? The connection between mind and body

can be just as real as Paige’s God. While her disease was idiopathic, she talks about its cause

biologically, making no reference to “God’s plan” as the root. She was cured with science, but

only through God’s help. Where her doctors discussed her body as a broken machine, she was

able to find her personhood in her religious faith. She may be a machine, but she is one that is

“beautifully and wonderfully made.”