Guest blog by Jamie Troil Goldfarb
sur·vi·vor noun: a person who continues to function or prosper in spite of opposition, hardship, or setbacks.
vic·tor noun: a person who has overcome or defeated an adversary; conqueror.
I am not a religious person, but the best equation I can make to waiting for scan results is sitting in purgatory, waiting for someone to decree if you’ll be going to heaven or hell. It is like that every single time. It’s not a routine medical exam. It’s not a necessary hassle. It is a time when you are waiting to find out if you get to keep living or if you may be one step closer to death. Even if you aren’t in active treatment, even if every previous scan has showed favorable results, each time you wait you are reminded that at any point your life could drastically change. And that is the reality of “surviving” stage IV melanoma.
The line between patient and survivor is blurred. People choose to think of themselves as one way or the other at extremely varied points during their journeys. Some people consider themselves survivors from day one, because every day they are alive, they are surviving melanoma. Others wait until they receive clear scans and are free from making treatment decisions. While others do not make the emotional leap until they receive a definitive “no evidence of disease” diagnosis. How you think of yourself during your journey is very personal and definitions tend to morph along the way, ebbing and flowing with the emotions most prominent on any given day.
Self-definition is a lot of things, but the thing that it’s not is a definitive transition. And I did not realize that when I started. When I was going through treatment, I assumed that at some point, the cancer would be gone and I would forever be a cancer survivor rather than someone living with cancer. I assumed that there would come a day when my doctor would declare me NED, we would have a huge celebration, and that would be that—a brush of the hands, a flick of the wrist, done. And while I am thankful every second of every day that the first two of those steps have happened, I am far from done.
You are changed forever by this horrible, terrifying, painful, beautiful, awesome, brilliant journey.
Cancer may leave your body, but it is forever imprinted on your soul. You don’t just go back to normal. You are changed forever by this horrible, terrifying, painful, beautiful, awesome, brilliant journey. You simultaneously fall into a depth of fear you didn’t even know existed and soar to heights of love and hope that you could never have imagined. For years you endure an ultra-intense, adrenaline-filled, life-or-death existence during which you are screaming with every inch of your being to please please please be allowed to live. And on that glorious day when you find out that your screams have been answered and finally melanoma is more behind you than in front of you, it is time to self-define again.
The author with her family
In all aspects of life, being a survivor is a commendable attribute. Being able to function and prosper in spite of opposition is something we all strive to attain. But, for me, it is too passive a definition for what happens during cancer. For me, it’s not enough to continue to function. After all that I have learned, all that I have been given, all I have seen during this journey, I need to keep it with me and allow it to continually shape my existence.
We don’t sit passively by while cancer happens to us, surviving each day by luck. We fight as hard as we possibly can. We endure levels of physical and emotional pain that most people cannot imagine. We kick, punch, and claw our way out of melanoma’s grasp. We don’t merely survive it, we conquer it. We are victors. And as victors, we wrestle and steal every ounce of love, gratitude, and beauty out of our journeys. We keep it safe and deep within us, and use it to remind ourselves of just how beautiful life is and how lucky we are to be living it. Because of our victories, we celebrate the mundane, we see joy in the ordinary, and we give thanks for monotonous every-day routines. While I am exceedingly thankful that cancer does not live in me anymore, I will forever live in cancer.
And I will never be done.
About the Author:
Jamie’s personal mission is to spread information about the importance of oncology clinical trials as far and wide as possible. To this end, she is involved with MRA and other melanoma focused advocacy groups, Imerman Angels, and CISCRIP. She also serves as a research advocate for NCI, and works one-on-one with patients to help them navigate their treatment options within and outside of NIH.
Jamie was diagnosed stage I in January 2007, during which time a wide excision and a sentinel lymph node biopsy showed that the cancer had not spread. In December 2009, she experienced a recurrence in the deep tissue near her primary tumor, but a PET scan and clear margins indicated the cancer was again contained. After consulting numerous key opinion leaders, it was determined that the best course of action was to wait and see. In January 2010 (one month later), Jamie became pregnant with her son, Kai. Two weeks before she was supposed to return to work from maternity leave, her oncologist suggested a follow-up PET scan. The scan revealed tumors in her liver and her pancreas. Her son was 12 weeks old. After quick, furious, and abundant research, Jamie and her husband, Jeff, decided that the best course of action was to join a clinical trial at the National Cancer Institute. That decision saved her life. Jamie enrolled in NCI’s TIL trial. From January through April 2011, while waiting for her new cells to grow as part of the treatment, Jamie received high-dose IL-2 as a stand-alone treatment. The IL-2 shrank the tumors in her liver and pancreas, but August scans showed 35 new subcutaneous tumors throughout her body. In September 2011, Jamie received NCI’s TIL treatment. The treatment has been working progressively over the past 2+ years and Jamie’s most recent scans, October and February 2014, both showed no evidence of disease. Jamie, Jeff, and Kai recently celebrated Kai’s 3rd birthday, and, because of NCI’s groundbreaking research, they are confident that they will be celebrating together for many years to come.