Moving Through Grief
Tips for Living with Metastatic Breast Cancer
An Essay by Amy Lyn Schnitzler
Amy wrote a powerful essay on living with metastatic breast cancer, originally published on Share Cancer Support in 2019.
I received my metastatic breast cancer diagnosis at 26 years old, on April 11th, 2016. I had just been accepted to my top 3 graduate school programs for Opera Performance and Classical voice the week before and was in the middle of trying to decide between them—all while attempting to process my beloved grandmother’s sudden death on March 30th, 2016. To say this time in my life was “full” is a monstrous understatement. I went from excitedly planning my future to mourning the devastating loss of my grandmother, and the illusion of the control I had over my life, in a matter of seconds.
The cancer diagnosis felt like a cruel joke. I was not overweight, I was not a smoker, I exercised, I valued health and wellness, and I lacked any of the associated high-risk factors for developing this disease, which is thought to typically impact women in their 60’s. I remember expecting to wake up from a terrible dream in the Spring of 2016 and have everything suddenly return to “normal.”
My life course has been forever altered by the insidiousness of cancer. Today I live with Metastatic Breast Cancer, with the disease in my lungs, liver, and brain. This also means I live with anxiety, depression, PTSD, and tremendous grief– grief for the countless losses I’ve already experienced, and the anticipation of how my terminal illness will play out and impact my loved ones. I believe that the experience of living with cancer is inextricably linked to grief. Cancer has a way of stretching and sinking its ugly claws into nearly every aspect of existence. It is a larger-than-life-diagnosis, and it changes so much. In my over three years of living with MBC, I have discovered some tools that allow me to not only cope with all the heaviness associated with the diagnosis, but to lead a life shaped by meaning and purpose.
1. There is no shame in seeking out therapy and/or medication for management of depression, anxiety, PTSD, grief associated with cancer.
In my experience, the state of my mental health is equally important to that of my physical health. Cancer is as much psychological as it is physical, and oftentimes the two intersect. My cancer is considered hormone receptor positive (HR+), meaning that the female sex hormones fuel its growth. Because of this, my treatment to this point has been largely based on starving my body of estrogen and progesterone to slow down disease progression. As a 26-year-old, being thrust into the “joys” of chemical menopause through drugs like lupron and aromatase inhibitors had devastating effects on not only my body, but my psyche. I gained weight, I developed severe hot flashes, my bones hurt, and my mood became unmanageable. I honestly wanted to die, and I believe some of the despondence I was encountering was due to the rapid physiological transition from “young maiden” to “old crone,” biologically speaking, in addition to processing the sadness and pain around a life interrupted— a life that no longer felt like my own. I ended up in the hospital. I was given mood stabilizers to help me better tolerate menopause and all of its emotional effects, and began Dialectical Behavioral Therapy to help cultivate some much-needed mindfulness in my life. The combination of medication (temporary) and new skills has proven helpful for me, and the techniques I learned in DBT are ones I still use regularly today. I am much more calm and centered today, even in the face of the constant unpredictability and upheaval of life with cancer.
2. Exercise is good for the soul.
Exercise helps facilitate emotional shifts and transitions for me, and I don’t think that’s just the endorphins (though the mood boost doesn’t hurt anything!). For one, it increases self-efficacy and encourages a ripple effect in making other healthy and balanced choices in my life (nutrition, sleep). The feelings I encounter in association with MBC are weighty, dense, and often overwhelming. There is something to be said for physically moving through the feelings- whether it’s yoga, dance, kick-boxing, weight-lifting, running, or walking. Movement of any kind helps my feelings move, soften and shift as well. When my oncologist first told me that my diagnostic CT scan showed innumerable pulmonary nodules (lung mets), I immediately took myself for a run, and I realized in the course of my 5 miles that despite the news I had just received, my ontological reality had not really changed. My lungs felt the same as they had before I received this new information. I wasn’t suffering physically in any way. Despite my new diagnosis, I was healthy—healthy enough to run 5 miles, to enjoy food, to feel connected to the ebb and flow of my breath, and free of physical pain. That was an invaluable realization for me, and one that I reflect upon often. And luckily, this all remains true today. On days when I’m not feeling my best physically, I often find that some light yoga, stretching, or a walk in the fresh air helps me to reset.
In this article from NBC News, I spoke with journalist Maggie Fox about how exercise can help fight the fatigue of MBC.
3. Get your creativity on!
I have always been drawn to the arts (classical music, drawing, painting, photography). Much like exercise, the arts boost my spirits and give me great pleasure. I believe that positivity attracts positivity, and like exercise, my creative tasks help me feel immersed in a joyful process. At the end of April, I underwent a craniotomy to remove a large metastatic tumor from my brain. During my month-long recovery, I was restricted from engaging in any physical exercise, which challenged my sanity and sense of self. I was forced to get creative with how to pass the time and cope with the emotional stagnation that was rapidly accumulating from my inability to do very much. I found tremendous comfort in watercolor painting, writing poetry, and blogging. Some of my creations are centered on cancer, and some of them are whimsical, light-hearted, and have absolutely nothing to do with “the big C”.
4. It’s okay (and sometimes necessary) to take space from cancer.
One of the trickiest aspects of this disease is how it sneaks into nearly all corners of your life without your permission. It has a way of impacting virtually everything. For the first year of my diagnosis, I struggled with my identity in a significant way. My life trajectory was permanently altered, and suddenly I had taken on the role in my family and friendships as a “sick person,” a person who suddenly required more care and attention, and even special-handling. My life felt swallowed up by this new identity— an identity I certainly did not sign up for. I think it is fairly easy for a person with an illness to fall into the role of a helpless victim. That certainly happened for me, somewhat subconsciously– I was terrified and looking to be led in any way that I could. I was craving safety and security. It took about two years for me to realize that living my life from a place of “why me?” and victimhood was not good for anyone—not my supports, and certainly not myself. At that point, it was time to get empowered. What could I control in this life of mine?I am generally a very articulate person when it comes to how I’m feeling. I’m pretty open with my experiences around cancer. BUT: sometimes I tell the people in my life that I need a couple of hours or days off from cancer. In reality, we (my loved ones and I) are never fully “off” from it, but this is my attempt to center conversation and focus around things that have absolutely nothing to do with my health. By creating that space for myself and my supporters, I am able to reinforce that cancer doesn’t have to touch every corner of my life. In the “no-cancer-zone,” I don’t want to talk about treatment or clinical trials or research or latest scans and labs, or even how I’m feeling physically. I want to talk about THEM! I want to genuinely share and connect over things that are special and important to my loved ones.
For the first year or so of my diagnosis, I struggled to be present to others in my life. In fact, I was extremely self-centered as I tried to adjust to my new life paradigm. Today, I try to establish some boundaries around my experience with cancer and this is my way of reclaiming some personal power to feel like I’m in my own driver’s seat. I am determined to continue to connect deeply and profoundly with my loved ones. I want the people in my life to know how much they matter to me, and cancer doesn’t get to take away my ability to relate or connect with them. Lately, I feel a strong desire to give more of myself to the many people I am blessed to have in this life; perhaps this sentimentality is motivated by my fast approaching 30th birthday—a milestone we weren’t sure I’d reach when I first received my diagnosis. I have found that taking periodic breaks from cancer and the cancer world/community is necessary for me. I dip into support groups when I need to, and I’ve gotten pretty skillful in compartmentalizing and separating my experience from other people’s experiences with MBC, though it does require conscious effort.
5. Connecting to a deeper sense of meaning and purpose.
Viktor Frankl, Holocaust survivor and psychiatrist illustrates in his book Man’s Search for Meaning that human beings can endure almost anything if they feel connected to a greater sense of purpose. Supporting MBC research gives meaning, shape, and purpose to my life. The lives of those of us living with MBC depends on research and development of life-prolonging treatments. Today, the overwhelming majority of money raised for breast cancer goes toward prevention and general awareness. Unfortunately, this does very little to help people in my position, whose disease has already traveled beyond the breast to other organs.
MBC research benefits everyone at every stage of the diagnosis. 1/3 of all people diagnosed with early-stage disease will become metastatic months or years after treatment for early-stage disease is completed. We need a CURE for ALL, and that cure will only come through funded research. We lose 116 lives every single day in the US alone to metastatic breast cancer. This is not okay, and it does not have to be this way. Less than 7% of all money brought in for breast cancer goes toward the terminal form of the illness. Over the last 2 years, I have taken part in several opportunities to share my story. This past October, I marched on Capitol Hill with METAvivor and METUP advocating for increased funding for metastatic research. I participated in a documentary through So Much More a film highlighting the grim truth of living with metastatic breast cancer. I also had the absolute privilege and pleasure to walk the runway in New York Fashion Week this past February for a collaboration between the vision of the late Champagne Joy’s Project Cancerland, who lost her life to this disease in 2017, Anaono Intimates, and METAvivor. The show brought in over $100,000 toward metastatic breast cancer research, which made taking the stage in my skivvies 20 lbs over my natural weight totally worth it. Becoming involved in advocacy has connected me to a sense of community and sisterhood which bolsters my spirits and provides me with much support. I am currently in the process of organizing a concert fundraiser for MBC research within my local community.
So, to recap:
1. Therapy and self-care
3. Finding creativity and joy
4. Taking time and space away from cancer
5. Connecting to a larger meaning and purpose.
Life with MBC is no cakewalk, but it can still be profoundly beautiful. I think the journey to contentment in this turbulent life starts with the gifts we give ourselves.