Copyright © 1998, Jamee Tanner
"It is malignant."
Those three words initiated me into a group like few others: a collection of unfortunate souls as diverse in the cosmic scheme as you will find. The password is "survival" and the closest thing we have to a secret handshake is a nervous hand across our scalp as we talk about a cure. Cancer comes in many different flavors: mine is Non-Hodgkin's Lymphoma, and it is life-threatening. I will never forget the day I unwittingly pledged to the fraternal organization of cancer victims. I was sitting at my computer at theDetroit News working on a graphic for the next day?s paper. I knew it was about 3:30 in the afternoon, because my husband came to work at 4:00 pm to design the sports page, and I was looking forward to seeing him. When my phone rang, I thought it would be him asking about the paper or offering to bring me some food. It wasn?t Jerry.
When my doctor answered, my heart started pumping double time. He was the plastic surgeon who had biopsied several small bumps on the crown of my head the week before. Jerry and I had already talked to him, and we thought we were finished with him. He scheduled me to see a neurologist the following morning at after determining that my bumps were beyond superficial extraction. The sound of his voice on the phone that day shook me in a way I cannot describe.
His demeanor was so calm, it immediately alarmed me. I was light headed with either fear or adrenaline, and my mind filled with questions I really didn?t want answers to. The doctor maintained a sedate tone and methodically explained that he had just received the biopsy results. He called to tell me that he had changed my appointment the following morning to see an oncologist at the hospital. "Why?" I asked as my head began to swim, the room falling away from my consciousness like a playhouse backdrop.
"It is malignant."
I can only describe what happened next based on my coworker?s accounts of my actions. I believe my own recollection either blacked out or has been psychologically buried, because I remember very little. Ironically, when the phone rang less than a minute later, it was my husband. I was wandering through our cavernous, and thankfully isolated, department screaming and sobbing as Jerry tried to find out what was happening from our department?s researcher. Once she caught my attention and told me my husband was on the phone, I took the receiver and cried, "I have cancer! Oh my God, Jerry, I have cancer!" He tried to calm me down by asking pointed questions and taking a rational approach. He emphasized our ignorance about the severity of the disease and its treatment. He pledged his support using "we" instead of "you" in every description of how I would survive the disease. Then, when I could finally feel my feet touching the ground again, he told me that he loved me, and said, "You aren?t going anywhere without me." It?s sounds trite now, but it got me home that afternoon. When I think about being a member of this wretched group, I remember my excruciating initiation and how my life changed forever. Reliving that fragment of time is what membership is all about. It is a lifetime obligation I can never escape.
I could probably chart most folks? initial reaction to my cancer diagnosis: it?s been downright Pavlovian. Their most common first response is a quick scan from my head to my feet. I assume people expect to find a melon-like tumor somewhere on my body that had previously eluded their attention. The scan is usually followed by a predictable fixation with my scalp. I can sense them silently debating over whether the hair is mine or a wig. They never ask, and I never tell. People try not to show their horror and pity when they first hear about my cancer, but some cannot help themselves. The majority fall into three categories of coping with my cancer.
Category one includes people who tilt their head slightly to the right in an attempt to show sympathy through body language during address. Once they strike the angle, their face wrinkles into an expression somewhere between a wince and a frown. Most follow this reassuring image by extending a hand or putting their arm around my shoulder to punctuate their concern. (This gesture isn?t always a comfortable moment with coworkers or casual acquaintances, but I feel as obligated to participate as they do.) Conversation topics tend to be narrowly focused: someone they know, (or worse, knew) with my disease, a vague offer of assistance usually phrased, "Well, if you ever need anything, you just ask," or Pandora?s box itself, "How are you feeling?" (Whether we discuss the cancer treatment or my state of mind is always at my discretion.)
The second category reflects a working knowledge of my condition accompanied by a desire for up-to-the-minute details on diagnoses, prognoses and my mental and physical well-being. This group is composed of some of my extended family, my husband?s immediate family, and a handful of coworkers and friends. These people either stay in touch with my husband and me directly, or are one link away from direct communication. This small group of people still has an obvious discomfort with the situation, but they don?t contrive phantom errands after five minutes of conversation with me.
The final category is reserved for Jerry, my mother, the doctors who treat me, and a few close friends. These are the people who have experienced the disease along with me. They know it and understand it as well as they can without contracting it. Some in this group even treat the disease as little more than a nuisance: they accept it, but they do not define our relationship by it.
Almost everyone treated my disease with the appropriate respect and reverence while I was still on chemotherapy: for me, cancer still commands an audience. The most disturbing trend I find myself coping with is that people don?t want the burden of dealing with me as a cancer victim if it imposes on them. I completed chemotherapy and my hair grows thicker every day, so they dismiss the disease like a change in the weather.
But remission is a step in the healing process, not a destination. The reality that I have family and friends who find themselves inconvenienced by my disease infuriates me. The threat of a reoccurrence looms over my entire future with every trip to the doctor, every ache, every pain, and every unrealized goal in my life. I cannot apologize for bothering people with this weight though I am uneasy for resenting those who make me feel I should.
Let someone who has curled up in a ball on the floor and screamed in sheer agony from the viselike pain of a spinal headache tell me my health is fine. Let someone who has seen locks of her hair wash down the bathroom drain like so many years of her life tell me nothing has changed. Let someone who has felt the nerves in her scalp jump and twitch where a brain tumor used to be, tell me to have patience in starting a family, building a house, or taking a trip. Don?t tell me what I can?t do and why; tell me what I can do and how. I must seize life whenever and wherever possible. Patience is not a virtue for me ? it?s a luxury cancer victims can rarely afford, and for many, it?s a death sentence. So walk with me, don?t hold me back. I feel so completely vulnerable, the stress of asking for help is excrutiating. Rejection is devastating ? indifference is even worse. Cancer requires more than a card and a prayer at bedtime: it demands your respect, and it deserves your attention. Remission is a rest stop: my journey to a healthy body and a peaceful mind will continue into the horizon and beyond. I appreciate the concern and support from all my family and friends, but the doctors won?t relax their cancer watch for another five years. I know mine will last forever. This is what it means to have cancer. Understanding, accepting, and supporting that journey is what it means to love a cancer victim.
For me, cancer is definitive. The disease now shares my identity. It is a fog that crept in on my life over the course of a year before I even knew it existed. When doctors told me this disease had silently blanketed my brain, cancer took over my way of life. I hated it. I hated the word cancer, and now I hate the words lymphoma, chemotherapy, MRI, catheter, and tumor. I get angry when I see IV bags, rubber gloves, and needles. If I notice a bad wig on someone I dismiss vanity and assume disease. This wretched malady has taken things from my life that cannot be returned, and I hate that too.
The notion of tomorrow is no longer the foregone conclusion for me that it is for most 24-year-old women. My mind races to the point of crippling distraction. Sleep is no escape because the harsh reality of cancer consistently invades my dreams. Child bearing may no longer be an option for me after chemotherapy, and doctors tell me my vital organs probably won?t fare too well either.
I realize people close to me must thank their God that they have not been stricken with this overwhelming burden, this cancer. When they look at me, I can still see the pity and the dread. And when I see that look, that moment when they politely avert their gaze to search for an uplifting word or thought, I silently ask my God why he saw fit to do it to me.