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Feeling Caught in Limbo Between Cancer Patient and Cancer Survivor

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My dentist calls me Monday night to remind me I have an appointment at 8 a.m. I check my planner, it’s already there. I set my alarm to wake up in time to be there. When my alarm goes off early I think it’s because I wanted to go on a run, so I do. I am looking at my phone while I eat lunch, and I see I have a missed call from a mysterious 617 number. My heart races as I assume it is my oncologist. I listen to the voicemail and am appalled that I forgot about my dentist appointment, this morning at 8 a.m. I assume I didn’t write it in my planner but I check and it’s there. Then I remember the reminder call. I can’t begin to explain how much my heart hurts in this moment.

These episodes are often brief. I find the lab at work. I realize my street is around the corner as I return from my morning run. I recognize my surroundings outside the [subway] window and I know I am supposed to get off. In these moments I remind myself that in an effort to kill all the cancer cells surrounding my brain and spinal cord, my chemotherapy treatment also might have killed off some of my healthy brain cells. I remind myself that it has only been a few months. This will get better. I will soon have the extraordinary memory I had before.

I wake up in the middle of the night to a stabbing pain in my head, another night it’s my leg, the next my ribs. One day I am painlessly on a three-mile run, and the next my knees hurt so bad I assume the cancer must be back. About every other month, I land myself in a CT or MRI because the fear my cancer has returned has consumed me. I spend 50 percent of the time I’m lying on that table worrying it’s back and the radiology tech is going to have to put on his best poker face when I get out. I spend another 20 percent of the time planning for my hypothetical stem cell transplant, 10 percent of the time convincing myself that if it returns I will be OK, and the other 20 percent of the time praying the cancer is absolutely never returning. It is exhausting and often debilitating.

I go to my doctor’s appointments and I hear all the positives in my cancer-free life: “Your blood counts are great.” “You are bouncing back from chemotherapy very well.” “Your bones are healing quicker than we imagined.” “There are no signs of disease on your bones.” I hear the words and I want to be happy, I am happy, but not as much as I should be. Instead I am focused on the things I feel chemotherapy has taken from me. When will the pain in my bones go away? When will I stop forgetting where I am? When will we know if the peripheral vision loss is temporary? Why did they say my heart rate was slow? Will the fatigue ever end? I think about the chances of congestive heart failure, early onset osteoporosis, and infertility, and my heart sinks into my stomach. Most importantly I want to know if I will ever get the old me back. Is she even in there anymore?

In admitting this I feel an incredible sense of guilt. There are cancer fighters out there who might not hear these remarkable statements about their health, who might not hear the words “You are cancer-free.” The guilt consumes me as well. I feel ungrateful — am I not doing enough to enjoy the life I have?

I find myself caught in a cancer patient/survivor limbo. I hear the numbers, a 50 percent chance of initial therapy working. Great, I’ve made it past that. A 20 percent chance of recurrence within the first two years of initial therapy. So the odds are in my favor, right? But there was about a 0.1 percent chance I got this disease in the first place, so 20 percent seems incredibly high to me. I want to live this extraordinarily carefree life, but I feel I am caught in a cancer prison until those two years are up. Some days I want people to stop asking me questions about my hairstyle and recognize it is a result of chemotherapy, and other days I want nothing more than to not be the “cancer girl.”

In all of this negativity that consumes me, I search for the silver linings. I think about the friendships I have made along this journey and the innate bond I share with my fellow cancer fighters and survivors. I am grateful for my ability to see the light in the darkest of days. My newfound understanding that life is too short affects every decision I make. There is so much beauty in my journey, so much happiness, so much gratitude.

In these moments of despair, I remind myself of the wise words I was once told during my treatment. I had already heard the news I was in remission, and I told my psychologist that I couldn’t quite understand why I still held all of this sadness in my heart. She told me I was grieving. I was grieving the loss of the life I had before cancer. So maybe the answer is no, I will never get the old me back. But I remind myself with each coming week of the cliché “time heals all wounds.” My body is healing, my mind is healing, my heart is healing, and it’s OK that it’s taking some time.

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The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here.

Originally published: November 11, 2016
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