There is a thought experiment in physics used to illustrate the quantum mechanics of superposition with a cat that is simultaneously alive and dead, and neither alive nor dead, depending upon observation of said cat.
Through my diagnosis and treatment as a 38-year-old elder “young adult” in the AYA community, I have toed the metaphysical line between knowing and not knowing about my cancer. When my neurosurgeon said incurable but fightable, I was listening. When my oncologist said, “Do not google statistics for this condition,” I was listening. I do not know my prognosis; I actually do not know very much about my specific cancer, and that is for a very important reason. I may be stubborn and I may be hard-headed, but one thing I do is listen to my oncologist. My mental health, such as it is, depends on it.
I am Schrödinger’s cancer patient. I look healthy, but I am sick, incurably so. Like the cat, I am simultaneously dying and not dying. You may have learned about scanxiety: the tension before or after getting a scan while worrying that the tumor came back, while obsessing all day and losing sleep all night, jumping out of your skin every time the phone rings, positive that the oncologist is calling to get you back into the hospital post-haste because this time, it’s really bad, it’s terminal. Until I get scan results, I am neither living nor dying. Until I talk to my oncological team, I am both dying and living.
Cancer patients have no hair. I have a mohawk. Cancer patients either look puffy or emaciated, depending upon their treatment protocols. I look basically the same as before. Cancer patients need help walking, eating, drinking. I usually don’t need any of that help. My stubbornness has carried me much further than the neurosurgeon and oncologist expected. Cancer patients take a handful of pills in the morning and another handful of pills before bed, all to stay alive. I only take nine pills a day: most of them are for mental health, not cancer.
I know that my GBM will more than likely be the cause of my eventual death. As far as I can tell, that’s not happening right now. Instead, I exist within this realm of duality, where I feel contradictory emotions and have experiences juxtaposed with life as a “healthy” sick person. I am grateful to wake up every morning, knowing that one day, that might not be the case. I am angry when I go to sleep, raging against the thing in my brain that keeps me in this state of constant tension. I feel awe for the neurosurgeon who saved my life by removing the tumor. At the same time, I feel uncomfortable, anxious, nauseated, every time I see the man that gave me the worst news of my life.
As Schrödinger’s cancer patient, I look great, apparently. My neurosurgeon tells me that I look great. My oncologist tells me that I look great. My co-workers tell me that I look great. Everyone says I look great. I can’t help but hear the surprise in their voices. I see the glint of disbelief in their eyes. I feel like I am living a lie. The public face I wear, in front of doctors, friends, the general public, would have you believe that I am just another not-sick person living a reasonably normal life in a reasonably normal world. I put on my strong face because I have the sheer force of will to paste on the fake smile and let my eyes light up. The light in my eyes is meant to hide the weakness I feel; the fake smile hides pain that wracks my body. I don’t look like I have cancer. They don’t see the dark circles under my eyes. They don’t see the color drain from my face as my willpower suddenly fails and I can no longer hide my illness.
As Schrödinger’s cancer patient, I appear strong because I am stubborn. I am a private person who prefers to hide my weaknesses. I get my face in order, and everyone who sees me is surprised. As Schrödinger’s cancer patient, I wonder if they would be so surprised if they saw me break down within the privacy of my own home. “But you are so strong,” they say, and I sob. In my home, I can be weak. I can lay in bed all day because the depression that comes with having cancer at 39 years old is paralyzing. I can stare at the wall, and feel nothing, because the Prozac is working. I don’t cry as much as I used to. Would they be so surprised if they had seen me in hysterics, crying on the kitchen floor, cradled in the arms of my husband, my angel, because I was just told that I was dying? Would I still be so “strong”?
One evening, I get fatigued so suddenly that there is nothing I can do but lay down in my dog’s bed. As soon as I am on the ground, I know that giving in to gravity was a mistake. My husband gets me upright and the tears start flowing. There are days when, as Schrödinger’s cancer patient, I am able to forget that I am sick. I can socialize, I can exercise, and suddenly I am surprised by how ill I feel. I am living while I am dying and sometimes, I allow myself to forget. The tears stream down my face as I lean on my husband. I can barely support my own weight. I feel humiliated and frustrated. I am a failure. Barely existing within that duality, I cannot deny that I am sick, so sick. I can see the fear and concern in his face, as vivid as the terror in my heart. As Schrödinger’s cancer patient, I can tell that even he was able to forget for just a while, and like a freight train barreling through our house, we remember, once again the constant tension of living and dying, dying and living.
I spend this time in the in-between. Living and dying, dying and living. Suffering and thriving, always in between. I have so much pain. Does my body hurt because of the chemo? The radiation? The cancer itself? Or does it hurt because I am an elder “young adult” and my knees are unhappy at the exercise I am no longer able to do. Last year I ran a 5k. This year, I get winded walking across the house. My weakness makes me want to cry. “But you are so strong,” they all say, and I keep on keeping on. “You are a warrior,” they say, and I keep on fighting; every day is a fight for my life, and I keep on fighting. Simultaneously living and dying, simultaneously doing the only thing I know how to do, so I keep on fighting as I am living and dying.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.cdn-pi.com/contact/submissions/.