The Word Survivor.

with Megan Solinger, MHS, MA, OPN-CG, Director, Service & Care Delivery
Megan Solinger, MHS, MA, OPN-CG has always had a passion for human development and the life cycle. She started with the Ulman Foundation in 2017 as an Adolescent and Young Adult (AYA) Oncology Patient Navigator for over 3.5 years through a partnership with the Ulman Foundation and the University of Maryland Marlene & Stewart Greenebaum Comprehensive Cancer Center, and has become a content expert and very passionate about fertility preservation for this specific population.  She’s currently the Director of Service & Care Delivery at the Ulman Foundation.

Celebrating Ulman House resident and Maryland Proton Center’s patient, Chandler Stroup’s bell ringing as he completed weeks of radiation treatment.
What do you think of when you hear the word survivor?
Perhaps you think of perseverance, overcoming a major obstacle, or the deserted island reality TV show.
In the cancer community, the word survivor, and National Cancer Survivors Day which intends to celebrate survivors on June 6, carries a very different meaning for different people.
On National Cancer Survivors Day, we invite you to reflect on your perception of survivorship, to consider how to use it mindfully and sensitively around those who have been impacted by cancer, and to deepen your understanding of all it entails.

Defining survivorship…sort of!

The Merriam-Webster Dictionary defines survivor this way:

Survivor, noun
Survive, verb
“To remain alive or in existence: live on.”
“To continue to function or prosper.”
“To continue to exist or live after.”
As stated on cancer.net, a person who has had cancer is considered a cancer survivor.
This simple definition leaves ample room for interpretation. Some patients consider themselves a survivor at the time of diagnosis. Others hesitate to classify themselves as a survivor until treatment has ended. Still others avoid the word altogether, often due to an awareness that cancer could return at any time. 
The word raises questions about what to call or how to categorize those who have metastatic cancer or even a chronic leukemia, or those who will be on medication for the remainder of their life. 
Clearly, the word survivor is polarizing, and it’s not universally celebrated by every cancer patient. Some people who have lived with cancer have created their own take on the word, and several of these have gained wide popularity. Many individuals prefer the term “thriver,” and it’s not uncommon to hear folks living with metastatic cancer refer to themselves as “metavivors.”
As complicated as it is to define the word survivor, the takeaway is simple: when talking with a friend, loved one, or acquaintance who has been impacted by cancer, be aware they may not embrace the term! And remember – it’s always okay to ask what their preference is.

Survivors, Sherpas and Ulman Foundation Staff gather to celebrate completing 12 weeks of training in our Cancer to 5K program at the goal race at the Baltimore Running Festival, October 19, 2019.

The Scope of Survivorship

According to a publication by the American Cancer Society, as of January 1, 2016, there were 15.5 million cancer living survivors among us in the United States. It’s estimated that there will be nearly 20.3 million cancer survivors of all ages by 2026. Adolescents and young adults only make up 5% of the prevalence. However, many patients are living longer post-treatment and with cancer, so understanding the scope of survivorship is more relevant than ever for AYAs and their caregivers.
In the healthcare world, survivorship typically refers to the time when someone continues to “live on, function or prosper, and continue to exist or live after” or with cancer. It can often be understood or conveyed as life after “beating” cancer.  When in reality, even those who enter survivorship in this sense are never fully free of their previous experience.  Many scars: emotional, physical, social, and financial can be felt throughout and post-treatment and well into survivorship, if not for the remainder of one’s life.  Living with side effects and late effects of cancer can lead folks to grapple with the prospect that they may never return to their pre-cancer lifestyle.
Just because healthcare has imposed a “survivorship” period on those that have completed treatment doesn’t mean that their existence or life goes back to normal. In fact, many patients often really struggle with this period of early survivorship.  It’s characterized by wider gaps of time between medical visits than the survivor had gotten used to during treatment, which can heighten anxiety. And many people make assumptions that the survivor’s life resumes to normal, as in pre-cancer.  This couldn’t be farther from the truth.
During treatment, patients are given a treatment plan and are told where to be and when.  To some degree, patients can be on autopilot, following a schedule of infusions, radiation, oncologist appointments, labs, surgery, recovery, and even in-patient stays. In my time at Ulman, I have worked with a number of patients who appreciate the structure of treatment, and the assistance of their clinical team in removing barriers to good care. It’s when they complete treatment that they realize they may never have dealt with the gravity of what just happened, and all of a sudden need more support and resources than ever before. That experience is not included in the typical definition of a survivor, however, and can therefore traumatize patients when what they thought would be the hardest part was over.
For almost all cancer patients, life is lived one day at a time.  Patients are encouraged to celebrate the small, medium and big wins.  For some, celebrating being a survivor is a tough pill to swallow, knowing they’re celebrating in a world, where others have not had such a celebratory outcome, or where a prognosis will never deem them cancer-free.  Like everything in the cancer journey, how each person chooses to define and embrace (or reject!) survivorship is very personal.
This June 6, we hope you know that at Ulman, regardless of how you define it, and no matter whether you embrace, wrestle or reckon with, reject or accept survivorship, we celebrate you!

Point to Point 2019 participants embrace at their daily Dedication Circle.

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