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 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 'made it through.' Six years later, however, I feel like I am still in it. I feel tremendously guilty 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, and making a secret playlist to be played at my funeral. Although it was a truly terrible time in my life, looking back, that period of time between first diagnosis and last surgery seemed to be 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 knowledgable 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 after effects 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 5 apples into the bag at the grocery was so hard; I needed to start over several times before finally being able to make it from 1 to 5. I had read about chemo fog, but this seemed extreme.

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. 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 feelings of well being have been severely impacted.

I am six years post diagnosis, and it is only now that I feel like I might be falling back into the myself that I used to be, after many therapy sessions, and a mindset change from the intense focus of illness, to a focus on wellness. 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 with 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 nurturing my mental health. Nobody is ever prepared for cancer, but I certainly was not prepared for this long term, invisible stage.

I am running to raise awareness for all of the stages of cancer, for the mental health needs during and after cancer,  for hereditary cancer, and especially for my mom and my brother.