What another survivor taught me about surviving cancer.
I never planned on being a survivor.
It’s not that I did not have the will to live or was not planning to survive; I just had planned for my whole horrible experience to be one moment in time. An obstacle put in my path that I would overcome, compartmentalize and forget about as I moved forward with my life.
“It would be an error to think a liberated prisoner was not in need of spiritual care any more. We have to consider that a man who has been under such enormous mental pressure for such a long time is naturally in some danger after his liberation.” I find these words from Man’s Search for Meaning by noted psychiatrist and Holocaust survivor Viktor E. Frankl, MD, PhD, to represent the most poignant example of what it is like to walk away from prolonged and painful trauma. I do not use his words or his experiences as a comparison between cancer survivors and Holocaust victims—certainly nothing can compare to the horrors and injustice of that shameful time in human history. However, simply walking away from a traumatic experience and on to the rest of one’s life is not typically an option.
As one walks out the doors of the oncology ward after the last of the scheduled treatments, once the last scans come back with the “all clear” and the notes of cautious optimism are detected in the nurses’ voices as they say goodbye, the feeling that ensues is not the expected euphoria that is portrayed in a Hallmark movie about a cancer survivor. The idea of being offered a second lease on life—to suddenly live without boundaries and with a perpetual sense of celebration—is not, contrary to popular belief, the common default setting of cancer survivors.
If that comes as a surprise to anyone who has not been directly touched by this disease, you are not alone. Even I was under this misperception from the moment I began treatment. My mantra was, “I’m just going to count the days until this is over,” and I did just that. Halfway done, two-thirds finished, one more scan to go. Then I pictured the handshake in the hall, the gold watch, the survivor diploma and riding off into the sunset. Even putting aside the expected fear of recurrence, coming to terms with the realization that I was a changed person and that I was now and forever a “survivor” was not something I was ready to understand.
The idea that once you walk out of the hospital you will officially pick up where you left off can be a misleading and dangerous notion. I didn’t start looking into proper follow-up care until a decade and a half after I was given the initial thumbs-up by my doctors.
Do I blame my doctors for not educating me about what I had in store? Absolutely not. Twenty-five years ago the notion of survivorship was rarely associated with a cancer diagnosis. The mental healing was not even part of the recovery process because the physical recovery was still so tenuous. I know my doctors were amazed that I was still alive, so anything else was a bonus in their eyes.
But this is a new era for cancer survivorship. One shouldn’t have to feel compelled to jump for joy with extra gratitude for being alive. Nor should survivors feel that if they do not enjoy every waking moment they are guilty of an unforgivable crime. Turning the shame of traumatic experience into the pride of accomplishment is a long, hard battle, but it is a winnable one. The cancer survivor population is growing every day, and that is not a sad story. It is a triumph.
Dr. Frankl was right. Walking out of the gates didn’t make me a free man, but it allowed me to acknowledge that I am a changed man. I have grown into those changes and learned from them, and I constantly benefit from what they taught me. They are gifts that only a survivor can appreciate and use to conquer the world.
—Allan Goldberg is a 27-year rhabdomyosarcoma survivor who has played a pivotal role in helping young adults cope with the psychosocial aspects of cancer and is the executive director of First Descents (www.firstdescents.org), a young adults cancer retreat.