The following essay is written from my own personal perspective and experiences. No two journeys are the same, and my intentions are not discourage or shed a negative light onto anyone battling or recovering from a chronic disease. I want to bring awareness to the emotions and events that often occur after the celebration is over and you try to return a “normal life.”
A chronic illness does not end the day you are given an “all clear.” When the formal treatment and surgeries come to an end, it is the beginning of a life-long battle that others may not see. It is a life that is not only consumed with anxiety and worry, but one that can be, at times, financially and mentally exhausting, in addition to socially isolating. You reach a point when realization sets in and the future comes into focus. You see the next phase of “surviving.” This phase is just beginning and you realize that cancer is looking back you in the rear-view mirror.
By all means, surviving cancer is a battle worth celebrating. I am blessed and thankful beyond measure. Many do not get to ring the bell after treatment nor walk out of the hospital with their family and loved ones by their side. For those, I offer great respect and gratitude as they are the soldiers that did not make it home from battle. Cancer is a deceitful and cunning monster. It preys and takes out the strongest and bravest, and attacks the youngest and most innocent without remorse or reason. So to say I am currently cancer free is feels amazing, although it can be fleeting.
What does it mean to be a “survivor.” A survivor is someone who has battled a disease and has been given the “all clear,” or that there is “No Evidence of Disease” present. It is often referred to as NED. Many use this date as the date they are cancer free. Quite honestly, declaring myself as a survivor feels like a bit of a misnomer, and to me feels as if I may jinx myself by declaring this status. I may have survived a round with cancer, but until death, it is not truly clear if life ended without a recurrence or a secondary cancer. I would prefer to say “I have had cancer” and leave it at that, but the social labeling and identification is almost impossible to escape. It is easier to give in to the “survivor” category for networking purposes and to connect with others that may share the same experiences. I tend to refer to myself as a “cancer survivor and thriver” but with the understanding that nothing in life is guaranteed.
I have been battling cancer and it’s remnants and destruction for eight years. I never thought the journey would continue even up to today. I have had nine surgeries and I am fast approaching my 10th. My cancer required a double mastectomy, revision surgery, a second revision surgery, fat grafting, partial hysterectomy, and thyroidectomy after a thyroid cancer diagnosis last August. These are just the major procedures. If that is not enough, I found out this summer that the manufacturer of my implants have recalled many of the models. I am preparing for my next exchange surgery with fat grafting in the next few weeks. I have tried to remain patient, hopeful, and thankful that with each new year that I can place my past health battles in a box and close the lid forever. I am still waiting. Maybe next year.
Outside of the surgeries, there are numerous doctor follow-ups, medications with side effects, and more blood work and scans than you can imagine. All come with hefty co-pays, and if you are like most Americans, there are large insurance deductibles to be met. I spend most years using any savings to pay medical bills. I have had to dip into my retirement to keep in good standings and catch up on bills. I have had to reserve most of my vacation and sick time to plan for doctor visits and unexpected procedures. My dreams of buying a house are in the dust. I cannot save enough for a down-payment and I fear that if I take on such a huge financial responsibility, and I fall ill for a third time, I will not be able to maintain or afford a home.
Your career unintentionally takes a backseat. Once others know you have or had cancer, they cannot help but see you as weak or less than. I have been blessed that I had a career that allows me to see doctors and have surgeries without much difficulty. Although, I have lost almost a decade of pushing myself to further my education or take a risk on a higher position in fear the stress of the job would trigger a recurrence as stress can impair your immunity and health in general. I was once invincible, but now feel limited in many ways. My health is my main focus 24/7 and I feel cancer laughing at me at every possible opportunity.
The emotional toll from the trauma does not only affect yourself, but also those around you who love and care for you. I have triggers that can bring me to immediate tears or into a depression. I have been tested for PTSD as it is becoming a common occurrence in cancer patients. Therapy has taught me tools to deal with doctors and scan anxiety, but I find that the smallest smell in a hospital, or change in a doctors voice when he expresses concern, can be mentally crippling. My parents and children often witness the frustration and fear that emits itself in the form of anger and tears with every set-back or surgery. I am forever grateful for their understanding and support, but I would much rather watch them shed tears of joy and pride for an accomplishment in my career or in my writing, rather than out of worry and fear.
I certainly realize I did not ask for this disease nor had any control over its attack on me, but I do know I can handle it with dignity, strength, and optimism. I refuse to be bitter. I have made a promise to never give up and to offer love and support to others who find themselves in this same circumstance. As I always tell my mother, “honestly, I do not know how not to fight – it is in my DNA.” Those two beautiful creatures that I brought into this world need their mom, and I will never give up because of them.
If nothing else, cancer has humbled and softened me. I reluctantly learned that there are some things in life that I cannot control no matter the amount of effort I invest nor the hope I may have. I feel grateful for where I am in my health journey, and I am blessed to have a medical team that truly cares and marvels at my optimism and perseverance. I am in good hands; I have wonderful friends, a supportive and loving family, and a fight in me that will not shatter. As I continue to drive through life and see cancer in my rear-view mirror staring back at me, I will do my best not to harbor fear as I have continually been one step ahead of him. He has caught me in the past, but has not been able to hold on for long.
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