We die a thousand tiny deaths...

By Jennifer Coughlan

Edited by Barbara Bigelow

 

Breast cancer has been a part of my life since I was 25 years old. At the time, I was an otherwise healthy and vibrant young woman. I was active in my dance and circus communities, on fire with passion and devotion to my crafts.  I had just been accepted into the Peace Corps, a dream of mine for a very long time.  The future I had crafted looked bright and promising; I had put so much work into what I loved, and it was paying off! Then one day while doing a breast self exam, I felt a lump. It moved and did not hurt, so I was not especially concerned. Still, I went to see my gynecologist, who also did not feel terribly concerned, but ordered an ultrasound anyway. A fibroadenoma, they thought. Just in case, I was sent to a surgeon. He wanted to take it out, again, just in case. I agreed, as Peace Corps has a very strict medical policy.  I was shaken, but undeterred - Peace Corps was all I could think about. 

The tumor ended up being cancerous. The surgeon was as shocked as I was, even having other pathologists look at my tumor sample. By this point, I had sold most of my belongings and was headed to Wyoming to work on a ranch to earn some money before I left for Peace Corps. I had to turn around and go home. I was diagnosed with Stage 1 breast cancer. Peace Corps rejected me because of the medical issue. I had no job, and few possessions. I returned home to have a lumpectomy with radiation. I was devastated, my dreams shattered.  I started over.

Fast forward 10 years. I had completed nursing school and was working in a trauma ICU as a nurse. My side hustle, circus, was providing me with opportunities to perform, and even tour with a few different companies. I had worked hard over the last decade to overcome (I thought) breast cancer at a very young age. I was happy again after so much strife with cancer. Then I noticed a lump near my collar bone. I thought it was just a swollen lymph node from the multiple colds I acquired from being a nurse. Still, I showed it to my oncologist at my 10 year follow up. I was just about to be crowned cancer free.  Instead, an ultrasound was ordered.  I watched the technician’s face as she scanned me, I knew what she was seeing. She called in another tech to verify her findings. This was not good. Again.

After a biopsy, it was confirmed I had Stage 4 breast cancer with mets to my bones. Again, my world imploded. I thought I was going to die right then and there. I knew of no other 35-year-olds that were diagnosed with a terminal illness. I began to spiral into a deep, dark depression as I started treatment. I could not understand how this could be happening to me, again, but worse. I had no known genes associated with breast cancer. I was annoyingly healthy since my brush with Stage 1 cancer ten years ago. I looked healthy. I trained and danced and, how? Just, how?

It is now over 6 years into my MBC diagnosis. I am currently on my 7th line of treatment. I have had progression many times. Each time feels like a punch to the gut, to put it gently. With each change in medication comes new fears, new side effects, but also, new hope. Maybe THIS drug is the one that will keep me NED (no evidence of disease) for years.  Maybe this one will be gentle on me.  In reality, I have enjoyed only 2.5 years of NED, the rest of the time has been a puzzle of stable, not stable, progression and some pretty awful side effects. 

We die a thousand tiny deaths, those of us with MBC. I have been through the death of my performance career, my nursing career, my physical strength, some friendships, some family members (because I don’t “look sick” enough), my health, my opportunity to have children, my sanity at times, and more. In the MBC community, we tend to revere those who have reached NED and stayed there for a long time, or have lived for many years with MBC, as we should. The reality is that most of us have multiple instances of soul-crushing progression.  I personally am more interested in those like me, who have not had solid ground to stand on.  How are they/we dealing with progression? How have they harnessed hope when treatments aren’t working? How are they managing day to day life with pain, side effects, debilitating disease? What can we learn from those of us who are in a constant state of flux due to our diagnosis? 

My cancer recently moved into my liver.  I only have IV options left at this time. We need more research for more tolerable drugs. We need to be seen for the unique patients we are, especially us young ones. While my path with MBC has been rough and rocky, it has also been filled with beauty. I’ve met so many other remarkable young women with MBC, and their strength and courage give me the strength and courage to keep going. I have incredible support from my friends and some of my family members. My partner goes out of his way to make even little moments in life sparkle and shine with love. I am still here, and I will continue to advocate for better treatments, better outcomes for us all. Thank you for listening to my story.

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