“I don’t want to worry you, but you know you’re at a high risk for lymphoma.” He said it straightforward. He said it quickly. I don’t remember there being dramatic music or serious eye contact.
“Yeah, I know.” I did know. That wasn’t a lie. I’ve known for a while. I remember the day that we were in possession of my medical records so that we could transport them from my first pediatrician Sjögren’s doctor to my second adult Sjögren’s doctor. Who wouldn’t take that opportunity to browse through?
Discussed with patient her high risk of lymphoma. Hmm…guess I must have been absent for that appointment. I can’t exactly blame the guy — what pediatrician would want to discuss with a 16-year-old that she is at high risk for lymphoma? Then again, stumbling across it in the thumbing through of my medical records, filled with words and terms that meant nothing to me, wasn’t exactly the ideal time and place to get the news.
So I took in the knowledge. Stored it in my brain in a part to never really surface. My friend was studying nursing and came across this interesting fact. “Hey, did you know you’re at a high risk for lymphoma? Now that I think about it, it makes sense.” She thought she was doing me a favor or that I would be intrigued about the human body. Medical terms take on a whole new meaning when they come to life.
“Yeah, I know.” Knowing and accepting are two different things. Maybe it’s even knowing and believing.
Either way, we all always think that won’t happen to me. I remember even thinking that I’ve already been dealt my cards.
Sitting in the exam chair, I told him about this lump I had felt in my neck for about a month now. The lump was an afterthought for the appointment though. I was really there because I had a sinus infection that wouldn’t go away. My sinuses seem so trivial now.
The room was quiet and much too large for only one chair in the center. He was quiet, wearing his head lamp and moving to each part of my body with a different gadget. His two hands moved up and down both sides of my neck. He went up and down, up and down, up and down. Not a word spoken.
“You actually have three or four lumps that are on your arteries. Not to worry though, you don’t have any other symptoms. Losing weight, night sweats, fevers, shortness of breath…” I know he kept talking. He was debating which test to run. I don’t know what else he said — the fevers, the shortness of breath, everything. I had it all.
I interjected, definitely at a socially unacceptable time. “I actually have been losing weight and I don’t know why.”
“Hmm…well, not to worry. It could be anything related to Sjögren’s. We just never know. It’s so hard to tell.” It was Friday, December 23rd at 4 p.m. I was alone in a quiet doctor’s office. He didn’t seem in a hurry at all, or nervous, or worried. But he said to call him as soon as I got the ultrasound. “Say hi to Mom,” he said. Yes, my doctors all know my mom and, in some cases, my whole family. Especially my mom, though; she giggles a lot and asks a lot of questions and shares details that I personally would choose to keep to myself. I smiled back to him and told him to have a great holiday. It seemed like the right thing to say.
I walked out to the desolate lobby. Still not a trace of life, everyone scurrying to bake the perfect pie and fret over last-minute gifts. Suddenly, I felt like everyone beyond those doors knew and were looking at me differently.
Merry Christmas! I might have lymphoma. We got you the 32″ Toshiba to match your new laptop! I have lumps in my neck. We can return that and get you another size! I might have cancer. Do you want cherry pie or the pumpkin roll? Cancer. How’s your job going? Cancer. When will you hear about the new job? It won’t matter if I have cancer.
My mind had already heard the phone call about positive results, quit my job, moved back home and robbed myself of any future of starting a family. I was weeks into chemotherapy before I had even made the appointment for the test. I’ve lived a fulfilling life. I’ve loved and I’ve laughed. I’ve dreamed and I’ve cried. This place is not my home — I am only passing through.
I don’t know what snapped me out of my dark cloud. Maybe it was believing. I realized I had a choice every day of living with Sjögren’s — to believe that something horrible will happen, or to believe that something horrible could happen.
Belief is a funny thing. I know that I have Sjögren’s. I know that I have to go to the bathroom every few hours to scrub away the film on my contacts from my dry eyes. I know that I will have to take medicine for the rest of my life that suppresses my immune system and triggers my salivary glands. I know that sometimes I wake up and my joints ache like an 80-year-old woman, and my fever and fatigue make me want to stay in bed all day. I know that going outside during the winter will result in all of the blood vanishing from my hands and toes, an astonishing phenomenon that draws all sorts of attention. I know that I’m more susceptible to sickness and have a high risk of lymphoma.
But sometimes it’s easier to believe that it won’t always be like this. And that that would never happen to me. I know what I have is real, but I still believe that one morning I’ll wake up and the darkness will have erased it all.
I know that I have a chronic illness, which means I will have it forever. But I still believe and hold out for that one moment when a doctor tells me I’m healthy and I’ve dodged all the risks. Safe. Not me.
But until that day, I have to know the facts and know how I can use it all to help someone out there who doesn’t believe in a future full of hope.
I was working at my desk when Dr. Lee flashed on my cell phone. “Ashley,” he said over the phone. “Your test results are in. They all look good. You weren’t worrying too much, were you?”
“No, not at all,” I said back into the phone. I reached over to my planner and crossed “WORRY” off my to-do list.
Ashley Tieperman was diagnosed with an autoimmune disorder called Sjögren’s Syndrome when she was 16 years old. Currently working as the Editor/Proofreader for Marriner Marketing. She is learning to manage life as a working professional, ex-girlfriend, daughter, sister, friend, and woman. Check out Ashley’s blog on living with a chronic illness: http://show-grins.blogspot.com/
Featured image via ronny-andre on Flickr