Diagnosis Part I: Sarca-What?

May 16, 2006 at 9:59 am (Uncategorized)

I’ve always been a hypochondriac. If I have a headache, I immediately assume that I’ve been stricken with a fatal brain tumor. If I’m feeling extra tired, I just know I have leukemia. A strange rash? It must be lyme’s disease. A sudden fever? The onset of a rare tropical illness. To be fair to myself, though, I have had my share of bad medical luck. Those last two were true. Within a single year, a tick gave me lyme’s disease and a mosquito, dengue fever. I’m also prone to developing the worst form of any given condition. Take ten people with a cold, and I’m the only one who will get first bronchitis and then pneumonia. Send a busload of tourists to Mexico and have them all brush their teeth with tap water (bad idea, I know), and I’m the one who contracts Hepatitis A. I don’t sprain my ankle, I snap the ligament. My husband Jay looks on the bright side and points out that we always get our dollar value from our health insurance premiums.

Given my innate pessimism and my track record, I wasn’t completely shocked when the doc-in-a-box I saw for a bad chest cold called me at home one fine Saturday and told me that the routine chest x-ray he had taken at his clinic had been re-read by a hospital radiologist who detected enlarged lymph nodes. “It’s probably nothing,” he said. “But you need to get it checked out with a CT scan.” When I prodded him for specifics, he mentioned lymphoma. ( need to interject here that I visited this clinic a few years earlier when I experienced vertigo, dizziness, and ringing in my ears. The same doctor sagely told me that I either had an ear infection or multiple sclerosis, referred me to a neurologist, and sent me home to stew for the weekend in a morass of panic and dread.) Jay tried to keep me from worrying too much for the days before I had the CT scan. Of course, Jay’s concept of taking your mind off of things is to watch either sports or disturbing TV dramas like “The Shield.” So, it came down to brooding, March Madness, or a drug dealer getting his face burned on the stove by a corrupt cop shaking him down. I chose brooding–always a sound decision for a pessimist.

Truth be told, I had a lot to brood about. I was thirty-three, and had a three month old son. We had just moved back to Helena, Montana, a place I love. Dying young and dramatically had little appeal when I could hold my gurgling, burbling baby boy who had learned to smile and focus his almond eyes on books. I loved him with a fierceness that struck me in my gut as much as my heart.

The CT scan came back abnormal too. The doc-in-a-box washed his hands of the case. I was beyond his area of expertise and needed to see a pulmonologist. Since Helena’s pulmonologist only sees patients once a month, I needed to go to Billings–a four hour drive to the other side of the state. Jay had just started a new job and couldn’t afford to miss a couple of days right away. So I decided to drive up on my own with Andrew. I was in my invincible martyr mode, a bad combination. In this state of being, I simultaneously believe I can take on any challenge while fully expecting to be wounded and to suffer. Jay hates the invincible martyr because it’s a lose-lose situation for him. By overriding invincible woman, he suggests I am weak and incapable of accomplishing a task. Ignoring the martyr leaves him open to accusations of being a rat bastard who has abandoned his wife.

Andrew was merciful and slept for a chunk of the drive to my parents’ house outside Billings. I’m ashamed to say that I resorted to listening to cheesy, uplifting pop music to keep myself from crying. I even played Jimmy Eats World’s “The Middle Lyrics,” with its chirpy refrainof “Everything, everything will be just fine/Everything, everything it’ll be alright” over and over while I shamelessly bargained with God. “Please. I will appreciate every day if you let this not be something terrible. Please. I will not complain to mysef about trivial things anymore like why I can’t lose the baby weight from my thighs or why Jay won’t unpack more boxes. Please. I will savor every minute of every day. Please, please, please. I want to watch my son grow up.” If I were God, I would find displays such as this intensely annoying. I would say back to me, “People never spontaneously chat with me on the good days. When the sky is blue and your lymph nodes are small, the phone doesn’t ring…” As it was, I didn’t get a response. There was only the thud of the music’s base on the car stereo, Andrew’s steady breathing, and the miles of open fields just beginning to emerge from winter flying by the car window.

I spent the night at my parents’, and they delivered the line that they surely must now regret: “Whatever it takes, we will be with you through this.” No one has been truer to their word than my Mom and Dad when they said this. But that’s getting ahead of myself.

The next morning I went to see the pulmonologist in Billings. Andrew experienced the first of many exciting hours spent in physicians’ waiting rooms. The doctor was reassuring and genuinely sweet. He ordered another CT scan, this one with contrast dye injected into my veins. Since I was breast-feeding Andrew, I frantically nursed him before the test and fretted about not being able to feed the little guy for the next 24 hours until the junk cleared my system. He had his first taste of formula a few hours later and promptly went on a hunger strike that lasted until I could nurse him again.

“I don’t think this is lymphoma,” the doctor said when the test results came in. With this news, I took what was probably my first full breath in several days. “It’s likely something called sarcoidosis, which is usually a fairly benign condition,” he continued. Benign. A good word. He said to be sure, though, I should have a biopsy done of one of the enlarged lymph nodes. The operation is called a mediastinoscopy; they would examine the tissue to see if it contained granulomae, which meant it was sarcoidosis, or malignant cells, which indicated lymphoma. I would have a two inch scar on my neck, but I could live with that. I wouldn’t even have to spend the night in the hospital. The doctor did mention, almost off-handedly, that if I did have this sarca-thing instead of cancer, he would need to do a bunch of additional testing because, although the sarcadoidadoodle or whatever usually stayed in people’s lungs and didn’t do much damage before it spontaneously went away, some people–“but not many at all”–got it in other places in their bodies, like their hearts and brains. But that was very unlikely.

The night before I was scheduled for surgery, I got a stomach flu and vomited so intensely and persistently that I had to go to the emergency room. See? I wasn’t exaggerating in my opening paragraph about my medical misadventures. A few days later, I finally had the operation. As expected, the tissue in my lymph nodes contained these granulomae. I had sarcoidosis. Life was good.

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