Surviving Survivorship: The Big C

The big C. The big C represents cancer, but change should be considered (I see the word change and sing “cha cha changes” in my head every single time). Change is a spectrum and is inevitable. Change can be good or bad, or something in between. It can impact you a smidge or profoundly, or something borderline. Cancer changes almost everything, especially perspectives.

Cancer has changed how I define survivorship as I have progressed in my cancer journey. Cancer was a good and bad change for me and has impacted me profoundly. I say profoundly because cancer has affected all aspects of my life: financially, medically, socially, professionally, physically, mentally, and even my soul. I have survived the cancer and the changes.

According to all-knowing Google, the definition of survivorship is “the state or condition of being a survivor.” Professor Google also states that a survivor is “a person who survives, especially a person who remains alive after an event in which others have died.” I can’t help but think, don’t we all die? This definition is encompassing and can include a car accident survivor to a drug addict survivor. A patient diagnosed with cancer who goes into remission or is cured can ‘fit’ that definition. My cancer is chronic and terminal, so I thought the term survivor didn’t apply because I would never ‘beat’ my cancer. Initially, I thought survivorship was a dancing rainbow unicorn with glitter hoofs twirling through the woods, something I would never see or come across. However, years of having cancer have changed my perspective. 14 years. I have decided that 14 years IS survivorship. It doesn’t matter if my cancer is terminal. We are all terminal. I hope that doesn’t surprise you.

I am not a rainbow unicorn with glitter hoofs twirling through the woods, but I am a 5′ 4”, purple-haired, chunky, tattooed woman still alive and working hard. Every. Single. Day. Every day, I am faced with a choice: get up and engage in life or stay in bed. We all are. For 14 years, I have chosen to get up and engage. I am surviving and living, making me one kick-ass survivor and everyone else around me. It needs to be celebrated because life is hard. Some days, I might even say I am thriving. Of course, there are days when I have stayed in bed, but I am still a survivor because the next day, I got up.

I am not a survivor because of the fruits of my labor. Being a survivor has required that I have a team to support me. My family and friends give me a reason to live, and they cheer me on. The medical field has worked hard and diligently to keep me as healthy as possible. My community provides opportunities for me to express myself and enjoy socializing. My neighbor who always says ‘hi’ and the dogs that always play outside my apartment window. These are some of the things that keep my survivorship fed and my membership renewed.

For me, survivorship is being active and living life. I live life my way and do the things that make me happy. I am blessed to see family and friends, be part of gatherings, and even go on small adventures. I can create, write, read, paint, and bust out my glue gun for fun. Survivorship is living a life that makes you happy no matter what is thrown at you. Holy shit, life can toss some significant crap in our direction. But I have a killer shovel and boots. I recommend you get some for yourself!

Survivorship is work, a full-time job. Managing a chronic illness, like cancer, with other diseases is time-consuming. Just pause for a minute and think. You have to make appointments, attend appointments, follow up with any testing, engage in prescribed treatment or therapies (which typically means a second appointment), and ensure all the doctors on your team are on the same page. That is just one aspect. Imagine you find out that the test you had done, the insurance denied coverage. Now, it’s your responsibility to appeal it. Boom! Another to-do list. Unfortunately, my cancer has caused several co-occurring medical conditions. So, this to-do list is multiplied for me. I manage all this plus everyday life stuff expected of a mid-40-year-old. I am constantly juggling, shifting, and trying to rebalance things. It is overwhelming at times and tiresome. I didn’t ask for cancer. I didn’t ask to be a survivor. Survivorship can be a double-edged sword.

Cancer isn’t the only thing I have survived. It may be the big C, but that doesn’t mean life doesn’t stop throwing crap at you after you are diagnosed with cancer. I have survived automobile accidents, mystery illnesses, little trauma, and big trauma events. I don’t feel cancer equals survivorship. It’s a frame of mind. How you respond to those events determines whether you are a survivor. You can have a lifetime membership or a monthly subscription. It all depends on what you do.

Survivorship is invisible. No one knows I am dealing with cancer unless I’ve disclosed it. I resemble your typical 40-something cat mom with a touch of punk. You would not look at me and think I have cancer or any other illness. Why does that even matter? Society has certain expectations. For example, one of the first questions most people ask when meeting someone new is, “What do you do for work?” That is a loaded question for me to answer. I can lie and say, “I am a librarian,” then they will move on to the next topic. If I say, “I don’t work,” they’ll expect an explanation or be curious about why I don’t because I look like I should. When I utilize handicapped parking on my bad days, the looks and comments I get sometimes are hurtful. I don’t want to tell my life story continually and feel I must justify my actions every time I leave the house—big sigh.

Survivorship is a choice, a way of life, and not something you asked for. Only you know your story unless you share it. It can be beautiful at times and make you feel invincible. I am a SURVIVOR! On other days, you can feel like you are being ripped to shreds, wondering, “Why me?” We are all survivors at one point or another in our lifetime; I see survivors every day. The mom juggling littles while trying to grocery shop and the firefighter who just left her last call, exhausted, are both surviving. That mom is surviving motherhood, the blessings, and the stress. That firefighter survived that previous call and saw things we can’t imagine. You are a survivor.

Let’s embrace survivorship and survivors. There isn’t a lot of day-to-day conversation about survivorship. We can help people identify it, name it, and know they aren’t alone. I say, “We should hold space, talk about it, and learn from each other.” I want to know what others consider survivorship. Does culture impact it? Does age or gender play a part? I am curious: what does survivorship look like for you? Leave a comment below or email me at sarasotap@comcast.net.

I look forward to hearing from you.