It’s a pleasure to share the next #MetsMonday featured post. If you’ve missed the others, click here and work your way back. They are all so good. This one comes from Emily Garnett. She shares about her MBC diagnosis and the difficult topic of progression. Granted, it’s not an easy read, but it’s a must-read.
Thank you, Emily, for sharing your voice on Nancy’s Point. Thank you, Dear Readers, for reading.
Update: Sadly, Emily died from metastatic breast cancer on March 29, 2020. #WeWillNotForget
The In-Between Time
by Emily Garnett
I was diagnosed with metastatic breast cancer in November 2017.
My diagnosis came after a flurry of biopsies, scans, then more scans, another biopsy, and innumerable meetings with members of various care teams.
By the time I had received my first Lupron injection, putting my body into chemical menopause, I had been poked, prodded, injected, scanned and re-scanned so many times, it made my head spin.
I was exhausted and traumatized, handed a ticket to a new life with a cantankerous co-star—incurable cancer.
Prior to my diagnosis, my metrics for productivity tested and challenged me. As a former distance swimmer and marathoner, I existed to find and test my limits both physically and mentally. I found joy and satisfaction in the exercise of redefining and expanding my boundaries.
Even as a new mother, I enjoyed the challenges of early childhood and looked for new adventures on which I could embark with my son.
We travelled cross-country by airplane and took trains to visit family and friends in other states from the very beginning of his infancy and well into toddlerhood. These excursions left me exhausted and depleted but also satisfied with the opportunity to find challenges in the everyday existence of life with a baby.
After I was diagnosed, I felt almost catatonic, unable to get out of bed many days.
No one would blame me for my deep depression, my anxiety, but no one else could pull me out of it, either.
My body continued to ache more and more, the physiological changes taking place were the manifestation of my disease, hobbling my body and crippling my spirit. I no longer had the energy to tackle the projects and adventures that my former self would think nothing of handling and then looking for more. My sadness defined me, and I saw my former life slipping away before my eyes.
Gradually, I emerged from my cocoon of grief and slowly allowed myself to re-enter the world.
As I continued with my first line of treatment, time crept up on me until I was preparing for my first PET scan to measure my disease response to the medication. Those scan results surprised all of us and indicated that my disease was not only stable, but that the amount of cancer in my body had reduced dramatically. Many previously metabolically active bone lesions were subdued—some had even healed themselves.
It was unbelievable that I could possibly respond so well and so quickly. My internal light bulb began to flicker once again, and I could see, in that dim light, flickers of hope.
As winter warmed to spring, and spring blossomed and grew into summer, my energy levels renewed with the changing seasons.
The warm weather served as a catalyst for me to reclaim some of the personal momentum I had lost, and I began to feel like myself again. With that renewed energy, came the renewed impulse to push myself, to drive forward again as I once had.
I barreled ahead, throughout summer and into fall, falling prey to the intoxication of busyness.
While my scans remained stable, I felt less so, and that instability began to manifest in a feeling of recklessness. I felt my energy levels slipping, and my ability to push myself waning. Still, I carried on as if my metastatic breast cancer diagnosis was a mere blip on the radar, a hurdle that I had surpassed.
Further cracks in the facade began to appear, punctuated by a scan showing progression.
My treatment was no longer working, and suddenly, I was faced yet again with the pain, trauma, and struggle from the previous year. I had clawed my way out only to fall back into the bucket, not recognizing the demands of my disease and implementing necessary changes in my daily life.
I shifted again, and began a new treatment—this time a clinical trial.
My life has slowed down significantly since this pivotal time. This trial came with its own set of rigors—complicated lines of communication, increased testing, and frequent clinical visits. What was supposed to be scans every eight weeks quickly turned into every four.
I was only a couple of months into the trial when I noticed some unusual headaches cropping up. Another scan revealed two small lesions and laid bare one of my greatest fears. The cancer had spread to my brain.
A few weeks after, I underwent brain radiation, more bad news. It had spread further, this time to my lung and liver. And so, I shifted once again, off of the trial and onto my first line of chemotherapy.
My life now plays out in the in-between times—the gaps between scans and treatment cycles where relative stability can again be found.
But even after I let out the strained breath I hold between tests, scans and results, the nagging feeling of something else never fully leaves.
I wonder when the next shoe might drop, when the delicate detente between healthy and cancerous tissues might give way to the ruthless disease that lies in wait within my body silently invading organ after organ.
I am forced to accept that this narrowing of my availability, my energy, and my life expectancy requires me to scale down the demands I place on my time accordingly.
Time feels fluid, fitting years of living, years of memories into days and weeks, into the “months to years” that I have been given.
And yet, it continues to present inflexible constraints on all of us. I cannot speed up my son’s graduation from kindergarten as much as I cannot speed up his graduation from high school, and I am unlikely to see either.
The recognition of such has required me to begrudgingly take on a perspective gained from life with an incurable, terminal illness.
Time, while precious, is also remarkably inflexible; I can painstakingly plan my time out in four-week chunks, knowing that to anticipate stability beyond that time frame tempts fate.
I will continue to live the best life I can in the in-between time.
Bio: Emily Garnett is an elder law attorney in New York. Following her metastatic breast cancer diagnosis, she turned to writing as a way to utilize her advocacy and community-building skills. When she is not writing, she is spending time with her husband, young son and two cats, and baking her famous chocolate-chip cookies.
Be sure to check out Emily’s blog and Podcast. Follow her on social media and donate to her fundraising efforts, too, if you’re able.
Emily’s blog: Beyond the Pink Ribbon
Podcast: The Intersection of Cancer and Life
Facebook page: Beyond the Pink Ribbon
Instagram: Beyond the Pink Ribbon
If applicable, how do you cope with living in the in-between time and/or news of progression or potential progression?
Do you have MBC?
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