By Dr. Constantina Michalos
HOUSTON, TX – I was diagnosed with an autoimmune disease in 1998 and, with regular monitoring by a team of doctors and daily fistfuls of meds, everything is under control. This condition is genetic, and I had manifested symptoms all my life, but who pays attention to cold hands during the winter in New York? Only when my hands turned color and were rock-hard did I go to the doctor. And that was in Houston. In August.
My PCP ran tests and, to our dismay, everything pointed to lupus and its charms. He referred me to a rheumatologist, a young man with curly hair and chubby cheeks. He looked like a choir boy.
He was a jerk.
“You’re going to die,” were his first words to me. I was so stunned that I couldn’t respond. People in our family died of cancer or heart disease. Scary, but, somehow, knowable. Lupus, on the other hand, was insidious. For no good reason except a kind of genetic crap shoot, the body turns on itself. Antibodies that, on a good day, fight off infections and other uninvited guests to our various body systems, become, instead, autoantibodies that can’t distinguish between healthy cells and these invaders. Every organ becomes an indiscriminate target, and the attacks or, if you prefer a euphemism, the episodes really hurt, can be incapacitating, and are often fatal.
I stayed with him for a few months. I should have reported him to the Harris County Medical Society, but I didn’t. I just found a doc with better skills and genuine humanity.
As cavalier as this guy had been toward me, he ordered every test available to confirm his diagnosis and rule out other complications. And the complications are myriad. Anemia is routine. I was first diagnosed with anemia when I was pregnant, but no one suspected anything more. Now I have blood tests every three months. Lymphoma is not uncommon. So as soon as I felt swollen lymph nodes, I was in my hematologist’s office. Scared. Really scared. But her name was Blossom, she was from Brooklyn, and she wore bright blue eye shadow to complement her orthopedically sensible shoes. What could go wrong? We tracked the lymph nodes for a few weeks. I looked like Joseph Merrick, the Elephant Man. Nodes were erupting all over my body. Finally, Blossom said, “You need a bone marrow biopsy.” My heart stopped. Then she said, “We’ll do it here, in the office.” I resumed breathing. How bad could it be if she was doing it in her office? I had to stop watching those stupid medical shows!
I lay on my side and she injected xylocaine into my hip. Then she said to hold onto the nurse who had positioned herself in front me. I could not believe the pain that came next. It lasted a few seconds, but it’s a miracle I didn’t rip off that nurse’s arm. And they both complimented me. “You’re a terrific patient.” “Did something go wrong?” I asked. “What was that xylocaine supposed to do?” Apparently, that just numbed the skin where Blossom inserted a needle the size of my head to suck out the marrow. The results were negative. I’ve had the procedure again. Nothing prepares you for the pain, but you learn to deal when you have a chronic disease.
I’m supposed to be writing about things Southwest, not about my health odyssey. Where am I going with this? To the Texas Medical Center (TMC), “the largest Medical Center in the world (the Center exceeds one thousand acres in size), it contains 54 medicine-related institutions, including 21 hospitals and eight specialty institutions, eight academic and research institutions, three medical schools, six nursing schools, and schools of dentistry, public health, pharmacy, and other health-related practices” (texasmedicalcenter.org).
Patients from all over the world visit the TMC daily, seeking treatment, praying for cures. But it is more than a landmark for the Annunciation Greek Orthodox community. In 1967, the Philoptochos Society began its Philocardiac Ministry, which continues to provide companionship, financial assistance, housing, and translation services to heart patients and their families. Alexandra Zografos, the epitome of philoxenia, was honored by Archbishop Demetrios with the Medal of St. Paul for her tireless commitment to this ministry on 30 April 2006. In 1973, Mary Bellos enlisted volunteers from Annunciation to establish The Children’s Art Project (CAP) at M.D. Anderson Cancer Hospital. Pediatric patients in weekly art classes used their original designs to create Christmas cards; CAP has since grown to include all holiday greetings and general note cards. Political involvement helped pass Cooley’s Anemia Act to provide research and treatment protocols for thalassemia, which primarily affects individuals of Greek-Mediterranean descent (Greeks in Houston).
With all this technology, and just down the street from the Johnson Space Center, you’d think the people who put a man on the moon could create a machine that produces detailed images of body structures more quietly. MRIs, and I’ve had several, are sort of routine with autoimmune diseases. It’s like lying in your own coffin, except death can’t possibly be this noisy! The sounds range from air raid sirens to tennis shoes in the dryer to incessant tapping. I wore a head set and listened to Beethoven’s Fifth Symphony during the procedure. That “Allegro con Brio” was no match for those magnets!
Everything was normal (for me), but I have to do this again in six months. Perhaps then we’ll use The 1812 Overture!
Will it still be claustrophobic? Will it still be noisy? Will the techs stick me repeatedly before they can start an IV? Probably.
Will the results be normal (for me)? I pray.
Each time I do this, I am grateful that I have this terrific team of docs and the best technology available to keep me healthy.
But I’m especially thankful that I have my sense of humor to get me through it all.