A Cancer Survivor Shares: Teresa’s Story
I walk into the building past the doorman, who no longer asks me for my identification. I am a familiar face. We both know my destination. It is always the same: the fifth floor. I give wave and say “Dr. Stubblefield of Memorial Sloan-Kettering Rehabilitation Center.” The doorman nods his head with a slight smile of recognition.
I continue to the Art Deco elevator, crafted in old world style. The details of the wood carving on the walls distract me for a moment. Such beauty! The mechanical sound of elevator doors closing reminds me of my location and purpose. As I watch the doors, I think to myself next time I hear that same sound I will have left my pain with my doctor.
When I enter the office I become aware that I am in the same place I’ve been many times before. Everything is always the same: the chairs, the smell of coffee, the rug and the endless calling of names. The only things that change are the faces. I see the impermanence of people, with permanence of location. These people are different than those before them; but, they are all here because of the long-term effects of cancer treatment. Who will go next? This question is unspoken.
My eyes betray me as they scan the room. My eyes meet another’s. Then always comes the same routine, first question, “What type of cancer?” Second question, “What year?” Third question, “Where are you from?” They are from Texas, Alaska, New York and Washington. I am amazed at the distance they’ve traveled. I understand the details it takes to make such a long trip. They tell me about the investment of time and money that had to be made to get into the chair they’re occupying.
As we share our stories, it is amazing to me that we share the same issues, pain, radiation fibrosis, heart problems, dystoina, neuropathy, and the list continues. Some tell me that other doctors told them they were crazy. They were diagnosed with chronic fatigue syndrome or fibromyalgia. I can’t help but smile. I was told the same thing, until I came to the rehabilitation program at Memorial Sloan-Kettering. Somehow the two hour drive in Manhattan traffic and the cost of parking doesn’t seem so bad. I am the lucky one in the office. Then I don’t mind waiting for my name to be called. I am the Lucky One.
My body cries out in pain. My mind knows the same. Finally, I hear my name. I rise, clutching my comfort items, my phone and iPad, carefully jamming them into my backpack. I have rehearsed my questions. As I am led down the hall, I grin to myself. I could get here with blindfolds on. I don’t need to follow. Yet, this is the part I play in my role of survivor.
I walk behind the young assistant. I have daughters about her age. Is this a good place to work? These small thoughts distract me from the 15 to 20 injections that are to come. I find when I focus on the gifts of my family and friends, I am able to gather strength. I am reminded my existence is more than my medical condition. I have a life filled with love. I am a lucky one despite the test of survival.
I find great comfort going to one source for all my medical problems. Their having coordinated my medical care has literally saved my life. They caught my breast cancer early. My heart issues are monitored. When issues grow into concerns, all of my “ologists” are notified. My doctors share my test results and the next courses of action.
When I can’t remember the details of my medical history, the benefits of a long-term survivor center are pronounced. The center’s staff are able to punch my name into the computer and pull up all the information they need. While this serves a medical purpose. It also serves an emotional one. I don’t have to relive each procedure or test or hear the words pour from my mouth, trying to get it right each time. It takes an emotional toll having to recount the surgeries you’ve had, list your reactions to medications and detail the diagnoses you’ve been given.
I share the same problem as others in the waiting room as I contemplate spending the winters in the south or moving to a warmer climate. Where are the hospitals there that serve a population like mine? What hospitals have a team of doctors that can treat my pain, my heart condition, my lymphedema, my radiation fibrosis, my radiated thyroid, and my risk for secondary cancers as a result of my treatment for cancer? What if I get sick while visiting my mother? Will they know a fever for me is 99.6 degrees? Will they know what medications I can’t take because of my long QT wave?
The lack of medical institutions around the county that provide care for long-term survivors severely limits options for the millions of us that have won the battle against cancer. It compromises our care and quality of life. It’s my hope that other cancer survivors throughout the country can receive treatment and support from a knowledgeable team of doctors trained in long-term issues of cancer survivors. I am a Lucky One. I am able to attend programs to support me physically and emotionally. I have access to nutrition advice and psychosocial support from staff who are well-versed in what we cancer survivors face day to day.
There are stages of passage from the initial diagnosis to living a life defined by cancer treatments. One migrates from the shock of hearing you have cancer to the assault of treatments and then to the abyss of being in remission…trying to figure out how to navigate your new life. It makes all the difference to be surrounded by a team who can prop you up and help you stand tall. I have a team that understands my medical needs and emotional needs as I live everyday in fear of again hearing the words that changed my life: “you have cancer.” I am the Lucky One.
As the number of cancer survivors continues to grow, these types of programs will be needed in every state. We are not crazy. We are not stupid. We are not lazy. We are cancer survivors with real medical problems. Not every doctor or medical institution is aware that our cardiac issues cause us to appear lazy. Our radiation fibrosis pain is real. A chemo-fogged brain doesn’t make us stupid. My goal is to let other long-term survivors know they aren’t alone in their quest for the “new normal.” My hope is to facilitate medical students to choose a career path in rehabilitation medicine for the millions just like me. Because, I am the Lucky One.
Category: Survivor Stories
Tags: CancerForward Survivor Story, dystoina, fibromyalgia, long-term survivors, Memorial Sloan-Kettering Rehabilitation Center, neuropathy, radiation fibrosis