No Evidence of Disease
Not a "Survivor"...Surviving
Then active treatment ended. I heard my oncologist say those 3 beautiful words, “No Evidence of Disease '' (NED), and I cried. Tears of accomplishment, pride, and relief that I was finally done with that part of the treatment plan AND tears of panic that I was being discharged from constant care. Questions fueled by fear entered my brain and wouldn’t relent. Questions like, “Now what?” “Who am I now that treatment is over?” “How will I manage my fears without routine blood work and check-ups with my oncologist?” “How do I go about my life now, without the comma of “active treatment” behind my name?” “How are they discharging me when I have so many side effects?” I had this false expectation that I would finally be able to exhale when I was discharged from active treatment, but I sat there on the exam table and couldn’t catch my breath. I was paralyzed by the unknown of this next phase. I knew I would now be labeled “breast cancer survivor” but that word gave me an unsettled feeling in the pit of my stomach.
I told you I would explain why I placed the word “survivor” in quotation marks. The word survivor indicates finality. Its definition is, “ a person who survives an experience in the past.” Sitting on that exam table, being told I didn’t need to come back for 3 months while not being able to breathe, I didn’t feel like I was done, that the cancer was in my past. I realized right then and there that I wasn’t a breast cancer “survivor”, I was surviving cancer and I would be surviving the rest of my life. I was surviving side effects from treatment and surgeries. I was surviving pain in a body I couldn’t recognize or relate to. I was surviving to figure out how to connect with that new body with all its missing and altered parts. I was surviving when I looked in the mirror and didn’t recognize that woman in my reflection carrying 30 extra pounds of steroid and chemo weight, with curly hair, no eyebrows, eyelashes or boobs. Months passed and I continued to feel lost and scared without the connection and safety of constant medical care and observation. I didn’t know how to be grateful AND live with all the newness. I didn’t know how to define myself as a woman and a sexual being. I had lost that badass warrior mentality as soon as I was discharged from treatment. I didn’t know how to do this part of the journey and sadly, I was given no guidance. I was not given the “what to expect after discharge” speech.
Like you, I have been greatly impacted by cancer. My cancer defined me for many years. As soon as I hung up the phone with my doctor, hearing the words,” the biopsy confirmed you have cancer”, I became Jill,a mom with breast cancer. As time went on, I became Jill, a surgery patient,… Jill, a chemo or radiation patient… Jill, a sufferer from side effects… to Jill, a breast cancer “survivor.” (We will get to why I put “survivor” in quotation marks in a little bit). I had lost the identity of JILL. It took me years praying, practicing yoga, growing through therapy, and coaching to be comfortable living my life as an exclamation rather than a series of explanations. Explanations that showed up as commas. I held onto those commas because without them I felt naked, boring, basic, and definitely not special. That comma, as small as it was, gave me safety, gave me something to latch onto, gave me a sense of purpose. That purpose was to beat cancer so I could raise my four young kids. When I was diagnosed, I was 38 years old with four children ages 3,5,7,and 10. I endured chemotherapy, radiation, targeting therapy, 8 surgeries, complications and setbacks. Through the entire process,however, I knew who I was. I was Jill, a badass warrior mom of 4 who could do hard things and I was anchored by that identity.
YOUniversal LOVE grew as my purpose shifted from beating cancer to developing a community where people can come together to reconnect, reclaim, and redefine their lives so they can let love return and live their life as an exclamation!
Hi, I'm Jill!
I wasn’t a breast cancer “survivor,” I was surviving cancer and I would be surviving the rest of my life.
I knew I needed to take ownership of my life and start living my life as an exclamation. I knew I needed to let love return in order to fill the holes that fear, anxiety, confusion, anger, overwhelm and betrayal left in my heart. But how? How would I begin letting love return? How would I find Jill? Jill as an exclamation. I yearned and craved for her. The answer was Yoga! Yoga was where I reconnected with Jill. It was through the healing powers of my own breath that I began to let love return. It was on my mat that I discovered that the universe resided in me and that I, Jill, without any commas, was enough. Not only was I enough, I was phenomenal. I began to shine my light while on my mat. It was there, on my mat, where YOUniversal LOVE was born.
YOUniversal LOVE was created to fill a void I felt after being discharged from active treatment with no guidance, resources or answers to any of my questions about survivorship. As time passed, I kept being confronted with the realization that my needs were not being met. There was a void I felt as a premenopausal woman being treated for breast cancer. The current survivorship care is lacking the understanding that chemotherapy, ovarian suppression, estrogen blockers, and surgeries have on the health and well-being of those affected by cancer. The long term side effects of treatment are not being addressed in a way that reaches both the 30 year old and the 70 year old. YOUniversal LOVE grew as my purpose shifted from beating cancer to developing a community where women can come together to reconnect, reclaim, and redefine their lives so they can let love return and live their life as an exclamation!
If the word “survivor” doesn’t sit well with me, how do I describe a person affected by cancer? A Disco Ball! (way more fun than survivor). A disco ball is hundreds of pieces of broken and mirrored glass put together to make a magical ball of light. I like to envision all of my explanations, my commas, as those broken and mirrored pieces of glass coming together to make one magical JILL! One magical light beam of YOUniversal LOVE. Every person diagnosed with cancer is a magical disco ball of YOUniveral LOVE and deserves to live life as an exclamation not because of their cancer journey but because they are the YOUniverse!
Every person diagnosed with cancer is a magical disco ball of YOUniveral LOVE and deserves to live life as an exclamation not because of their cancer journey but because
they are the YOUniverse!
My Favorite Things
Our capacity to destroy ourselves is matched only by our capacity to heal ourselves
My Favorite Things
Sunshine. Wayfarers kickstarter semiotics, quinoa godard dreamcatcher hexagon pop-up hoodie.
Ice cream. Microdosing gochujang keffiyeh salvia. Hoodie knausgaard art party.
my guilty pleasure
Photos! Hashtag fashion axe palo santo fanny pack, ramps cornhole messenger bag asymmetrical.