May. 22, 2009 |
The
story of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin's
lymphoma, became tabloid fodder overnight. The boy and his mother are on the lam because the mother refuses, because of her beliefs, to authorize chemotherapy treatments for her son. Hodgkin's lymphoma
has a 90 percent cure rate with chemotherapy, and a 95 percent chance
of killing a person without it. Chemotherapy will likely save Daniel's
life, and as a pediatrician I wouldn't hesitate for a moment to
recommend it.
But I would also like to turn down the volume on the
talk-radio chatter and outraged editorials. That's because nobody seems
to be talking about what it takes to beat Hodgkin's (or any other
cancer). What it takes is a grueling regimen that can indeed give even
a dying person pause. In fact, the Hausers didn't refuse chemotherapy
outright. They defied doctors and a judge's ruling only after Daniel
experienced some of its violent effects following one round. If you
don't understand why, listen to my friend, Arun Ponnusamy, 36, who beat
acute lymphocytic leukemia. "Surviving cancer is one thing," he says.
"Surviving chemotherapy is another thing entirely."
Ponnusamy is now an educational consultant in Los
Angeles. He was diagnosed with cancer in his early 20s. His disease,
like the Hodgkin's that afflicts Hauser, has a high survival rate if
treated right away. As a young adult, Ponnusamy underwent a regimen of
chemotherapy treatments that Hauser, if the courts have their way, will
likely experience.
Fighting cancer pits a person against potent drugs. But
because of their horrid side effects, they take the doctors' credo,
"First, do no harm," to its limits. Sophisticated as chemotherapy drugs
may be, they're not smart enough to distinguish tumor cells from
healthy cells, leaving one's entire body vulnerable to their toxic
effects.
Ponnusamy underwent two years of chemotherapy at the
University of Chicago Medical Center. For many months, surgeons
administered a central line into his chest. "I literally felt
possessed," he says. He recalls hours of nausea and vomiting after
infusions. When that was over, there would be hours more of dry heaving
over the toilet. "I remember asking myself more than once: 'How can
this be doing me any good?'"
He dropped from his usual weight of 145 pounds to 110,
the result of an inability to tolerate foods and of anorexia from the
drugs. He stopped fitting into his normal clothes and, like most cancer
patients, began losing his hair. "I didn't recognize myself," he says.
On several occasions, Ponnusamy had to be readmitted to
the hospital after his treatments because he developed high fevers and
shaking chills. Most anti-cancer drugs suppress the bone marrow, where
your body rapidly produces cells of the immune system. Those of us who
have taken care of cancer patients know that within days of receiving a
round of chemotherapy, a patient's immunity grinds to a halt and white
blood cell counts drop to near zero, leaving the body defenseless.
Suddenly even common infections become life-threatening. Some patients
experience severe erosions of, and infections on, the lining of their
mucous membranes, leaving their lips, gums and the inside of their
mouth, throat and nose and even their stomach inflamed, bleeding and
burning with pain.
Ponnusamy, like many other cancer patients, found himself
admitted to so-called positive pressure rooms, where air is blown out
to minimize any infectious pathogens. He was sequestered ("bubble boy,"
his brother and sister called him) and given dose after dose of I.V.
antibiotics for up to a week at a time. In addition to losing white
blood cells, patients lose red blood cells and platelets, leading to
anemia and a difficulty in stopping bleeding, even with the smallest of
cuts.
Cancer patients usually go through several rounds of
chemotherapy, the number of which is determined by the type of cancer
and extent of the disease. Each treatment puts a patient at risk for
these complications and others, such as renal failure, another common
side effect. All of this can lead to a recurrent cycle of ordeals for
patients and their loved ones.
While Ponnusamy had great family support, fighting cancer
required sacrifices nobody could have foreseen. His mother moved in
with him to help oversee his care. He recalls that his brother, eight
years younger and in high school, was uprooted from his home and
friends in Ohio and forced to finish school in Chicago. His sister,
living in New York, would fly back to see him regularly and even helped
to administer his injections, even though she was more scared of
needles than he was.
Many cancer drugs have long-term effects. Some of the
drugs used to treat Hodgkin's can cause irreversible damage to the
heart and lungs. Other chemotherapy agents and radiation therapy can
lead to infertility and even secondary cancers of the thyroid gland.
Ponnusamy, having survived his battle with cancer, still
has leftover effects today, including permanent numbness in his feet
(known as a peripheral neuropathy). He has to regularly examine his
feet to make sure he hasn't injured them or developed any infections.
Four years ago, he began having some leg pain. When his doctor looked
at an X-ray of his left femur, Ponnusamy discovered that his
chemotherapy had permanently weakened the bone, leaving him vulnerable
to fractures and limiting his ability to perform certain activities.
What's difficult to gauge is what fighting through cancer
does to one's psyche. Ponnusamy recalls dealing with his adversity with
humor, maybe a bit too much. He tells me that one support group asked
him not to come back after he distributed an article from the Onion
parodying a man's battle with cancer. Still, he says, "not an hour goes
by when I don't think about having had cancer." He still has the scar
on his chest from where he had his central line placed. In his home, he
has a copy of his chemotherapy protocol, notes from other cancer
patients he met, and even some old Marinol, which his doctors
prescribed to help abate his pain and anorexia. Although he's at low
risk of recurrence and no longer requires any special surveillance to
keep his cancer in check, getting sick with something as trivial as a
cold still gives him a good deal of pause.
So I sympathize with the Hausers, who want to treat
Daniel with complementary medicine. But there's a reason why it's
called complementary. It may have a place, but that place must be
alongside medications that will save Daniel's life, save him from a
death that is bound to be more ugly and prolonged than hellish cancer
treatments.
In the end, chemotherapy saved Ponnusamy's life, and
although he wouldn't wish it on anyone else, he agrees it's the right
choice for the Hausers. "I get how horrifying it would be to see your
child go thorough chemo," he says. "But there's a light at the end of
the tunnel."
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