Friday, April 10, 1998
Rare disorder sends dark cloud over life
COLUMN: Daily battle with unknown disease brings out sun, at
least for now
I have a doctor’s appointment on Tuesday. At 9 a.m. in the UCLA
Medical Center building, I’ll listen to my pediatric oncologist’s
interpretation of my full body x-rays and bone scan. I’ll listen to
him tell me if my disease has spread.
A few days before Christmas, I went to my dentist for a routine
check-up. He took the usual x-rays, but there was nothing usual
about them. Dr. Jones stared at the illuminated picture of my lower
right jaw and asked me how old I was. I said, "19." Then he turned
toward me in his rolling chair and said, "Well, Andrea, there’s an
unusual amount of bone loss in your jaw. Now, for someone your age,
this is extremely rare. In fact, I’ve never seen anything like it.
I want to set you up with an appointment with an endodontist, just
to see what’s going on." I asked him what could have caused my bone
loss. He mentioned a simple infection and cancer in the same
sentence. I stared at him blankly. It was as if he was one of those
characters on the "Peanuts" cartoons. His lips were moving, but his
words were mashed together into some incomprehensible babble; I
didn’t recognize any of the phonemes in combination. All I could
focus my mind on was one word: cancer.
Fast forward through a few appointments with dentists and
endodontists to a Dr. Redd at UCLA Periodontics. The doctors
covered under my medical insurance are baffled by my rare
condition. They suggest going to a teaching school. I’m a proud
Bruin, but treatment at UCLA, one of the best medical centers in
the country, will not be covered by my insurance. My family will
pay for many procedures and appointments out of pocket. I sit in
Dr. Redd’s chair and listen to him repeat the sentence I’ve heard
so many times already: "This is extremely rare in someone your
age." Within a few moments I’m under local anesthesia. I watch as
five or six resident oral surgeons hover over me, peering into my
mouth, while Dr. Park performs a biopsy, removing samples of my
bone and gum. As my parents drive me home, I run my hand over my
swollen cheek and lips and realize: This is really happening to
me.
A week passes as I wait for my biopsy results. My mom, a
registered nurse who works at a hospital that treats cancer
patients, wakes me up at odd hours to administer my antibiotics.
She tells me stories about her cancer patients – the young ones,
some of whom didn’t survive. My father is less vocal; his job will
be that of the traditional father’s: driving me to my appointments
and sitting patiently in waiting rooms. My sister, visiting from
Seattle for a week, tells me that she’s losing sleep and that she
thinks my mom is really worried. I try to play it all off as best I
can. I tell them all, "It’s not a big deal, really."
I tell a select group of friends about my condition. My best
friend, La Tawnya, laughs when I explain how ridiculous it is, that
a dentist’s appointment led me to a possible cancer diagnosis, but
she’s nervous and shocked, I can see by her expression. My friend
from school, Cyrus, sounds perplexed. He wants to know everything;
he calls me after each doctor’s visit. My friend, Jane, says, "I
don’t know how I know, Andrea, but I know it’s not cancer." I hope
she’s right as my family and I wait outside the oral surgery
department for my results.
An oral surgeon says that my biopsy results were inconclusive,
but that "We think it isn’t malignant." My mother and I exchange
anxious glances; she asks if he can guarantee that it isn’t cancer.
He can’t. The doctor attempts to explain the bone loss by
diagnosing me with an extremely active form of adolescent
gingivitis. He says I may lose up to 5 teeth in my lower right jaw
and that another biopsy should be taken. For the first time, I
allow myself to become frustrated. I feel as if I haven’t learned a
single thing.
That same day I ask my parents and sister to start dinner at
BJ’s while I order more antibiotics from Thrifty’s. As I wait in
line for what amounts to 45 minutes of hell, I become infuriated.
Once again, I am waiting, I think to myself, and for what? For
ineffective drugs that are being blindly prescribed to treat some
unknown "parasite"? What’s the use?
I join my parents at BJ’s, still angry from my wait at
Thrifty’s. My mother has ordered the wrong kind of pizza, I throw a
small tantrum, my sister says something which annoys me, we argue
angrily for a few minutes. This will be only one of many tantrums I
will throw over insignificant inconveniences over the next three
months. My family will have to wade through my ever-shifting
moods.
Fast forward again, to the second Friday of winter quarter. I’m
back at school and feel a little less neurotic. I realize how much
I appreciate classes and homework, considering that I almost took a
quarter off to stay at home and be treated for my disorder, curse,
disease, whatever you want to call it. On this particular Friday
though, I’m having surgery to remove the teeth affected by my
situation. Cyrus, Jane and my roommate, Susan, walk me to the UCLA
Periodontics Clinic, where we meet my parents. Dr. Redd shows up
within a few minutes and Susan and Jane give me hugs; Cyrus
struggles to find something to say, something perfect for the
moment and I smile at them all as I follow Dr. Redd away from the
waiting room.
I request more and more shots of anesthesia as they take many
bone and gum samples for my second biopsy. I clutch the armrests of
the dentist’s chair as the anesthesia wears off and I feel the
stitches sewn carefully into my gums.
Another long week passes as I await my second biopsy results. My
emotional fortress slowly begins to cave in under the barrage of
stress. I struggle to concentrate in my classes; learning the
subjunctive in Spanish seems trivial compared to the things on my
mind. I listen to my friends talk to me about their relationships
(or lack thereof) and become increasingly annoyed. I don’t have the
patience to offer my usual advice. I call Dr. Redd for my results;
they’re not in yet. The stress mounts. My mother calls – again and
again. She asks me to go to sleep early, reminds me to take my
antibiotics, asks me to figure out complicated medical insurance
issues. She complains about what the treatment at UCLA is costing
her.
A few days later,Cyrus walks me to the Perio Clinic to get my
diagnosis. We have become very close since my medical situation
began and I am glad to have his company. Dr. Redd diagnoses me with
a rare disorder called Langerhans Cell Granulomatosis. He says he
knows little about my rare disease, except that it affects the
bones throughout the body and recommends that I have a full body
bone scan immediately to see if the disease has localized or
spread.
After getting my diagnosis, I call my mom. Although I should
feel relieved that a name has finally been given to my illness, I’m
exhausted in every possible way. I feel like sleeping whenever I am
still for a few minutes. I wonder if this is a symptom of my
disease or an effect of the emotional stress. My mother has already
spoken to Dr. Redd and some other doctors at work. She babbles
about chemotherapy and skull x-rays. She tells me to run an errand
for her concerning medical insurance. I misunderstand what she asks
of me and ask her to repeat. The communication continues to be
strained; I struggle to understand what she asks me to do while she
begins to yell at me. I begin yelling too in an effort to get a
word in edgewise.
She stops, asks me if I’m all right besides my medical
situation. Frustrated with her attempt to apologize without
actually apologizing, I tell her I have to go. I hang up the phone
and start crying. It’s the first time that I’ve let myself feel
truly upset. I sit there in my dorm room, staring out the window,
hot tears streaking face. Cyrus opens my door, notices me crying
and wraps his arm around me, asking me what’s wrong. I explain that
I can’t pretend anymore. The hardest part of this whole thing is
the front I’ve been putting up, like I’m strong enough to deal with
this. I tell him I’m not. He says that I don’t have to be. We sit
there for a while as I pull myself back together.
A couple weeks after I was diagnosed, I had a full body x-ray
and bone scan done. In radiology, an IV with a radioactive isotope
is inserted into my arm. I go to class and come back to radiology
where I lie on a table. The technician tapes my feet together so
that I won’t move them for the half an hour it will take to do the
bone scan.
A weekend passes as I await my lab results. The night before I
expect my results I become moody and confide in some friends who
offer worried looks and long hugs. Encouraging words flow
incessantly. I go to sleep early and try not to dream frightening
dreams.
The morning of my appointment with oncology is an odd one. I
take my shower and can’t help but cry a little, just enough to
remind myself that feeling numb is not necessarily a good thing. I
grab my backpack and meet my parents downstairs. It’s finally going
to be over soon.
All of my tests came back negative. The disease has not spread
to any other bones in my body. For another month, I can go back to
my normal life and assume that everything’s OK. On May 7th, my
mother’s birthday, I will return to pediatric oncology to check
again to see if the disease has spread.
The days before I got my results back, El Nino was soaking
Southern California with torrential rains, but the day that the
doctor said that I was OK, the sun came out and the skies were
blue. The next day, it rained again. Maybe the storm was just
passing through. Maybe it will be back again, only stronger the
next time. I guess I can only wait. Hopefully, in a month, it will
be another sunny day.