By Elizabeth Barnes
With the annual Run for the Cure upon us, I am reflecting upon my first experience of participating in this event as a patient six years ago, newly bald and still in a state of shock, contrasted with my upcoming second experience as a breast cancer survivor.
I struggle with the word “survivor”. Maybe it’s because I still don’t really feel like a survivor, six years post diagnosis. The word “survivor” implies I’ve 'made it through.' Six years later, however, I feel like I am still in it. I feel tremendous guilt that I don’t feel like a survivor, when many before me (my mom and brother included) would have given anything to be in my privileged position of surviving. Please don't misunderstand —I am filled with gratitude and take note every single day, even when completing the most disliked tasks. I am grateful because I know that if I were sick, I would give anything to do this task again. I am grateful beyond words to be able to age, enjoy my family and kiss my grandchildren. I know, and feel, that I am a very lucky person.
When I was first diagnosed, it was a whirlwind of tests, appointments, decisions, surgeries, treatment, and the certainty of feeling like my death was imminent. My life was a weird juxtaposition of reassuring my children that I would be fine while secretly making a playlist for my funeral. Although it was a truly terrible time in my life, looking back, that period between my diagnosis and the last surgery seems like a blur of busy, robotic days. I honestly cannot remember the day-to-day passage of time.
During active treatment, I took comfort in seeing knowledgeable specialists every week. I relied on my inner strength each time I underwent chemo, as I knew that I was taking steps to (hopefully) save my life, even though the aftereffects would leave me on-my-knees-weak and feeling incredibly sorry for myself for days. Once surgery, chemo, radiation, and another surgery were complete, I was declared NED—No Evidence of Disease. I rang the bell. Somewhere along the way, I discovered that I carry the BRCA2 gene. The pain, sadness, and guilt that goes along with that is a story for another time. Suddenly, the appointments stopped. Access to specialists—finished. I was both elated…and terrified.
Not many people talk about the fallout after cancer.
Going back to work after being sick for the better part of a year was hard. I had lost all of my work lingo and felt an extreme loss of self confidence. Before cancer, I was an avid baker. The first time I made muffins when I was feeling well enough, I struggled to remember what “1/2” meant. Counting out five apples into the bag at the grocery store was so hard; I needed to start over several times before finally being able to make it from one to five. I had read about chemo brain fog, but this seemed extreme.
Now, I am at the stage where I am physically cured. I’m back at work, I am active, and I look like my old self. For me, however, this is the part where every twinge, every lump, every cough paralyzes me with the fear that cancer is back. It’s the part where even though I am six years post-diagnosis, an unusual blood result will send me into a tailspin of dizzy, sweaty, nauseating anxiety that causes me to miss work. Anxiety and fear that did not previously exist is now interfering with my day-to-day life. I look healthy on the outside, but my soul, my psyche, and my sense of well being have been severely impacted.
I am six years post diagnosis, and it is only now, after many therapy sessions, and a mindset change from the intense focus of illness to a focus on wellness, that I feel like I might be falling back into the person that I used to be. If I am going to get sick anyway, I may as well start off healthy, I tell myself. I feel altered by the fallout of cancer, possibly more than the cancer itself. I cannot help but feel a certain dread that a new diagnosis is lurking around every corner, be it rational or not. In treatment, my mental health carried my physical health. In survivorship, it is my physical health now nurtures my mental health. Nobody is ever prepared for cancer, but I certainly was not prepared for this long term, invisible stage.
This time, I am running to raise awareness for all the stages of cancer, both visible and invisible; for mental health requirements during and after cancer; for hereditary cancer; and especially for my mom and my brother.
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