KATHY'S STORY:
My name is Kathy and I am a 61-year-old woman with metastatic breast cancer with metastases in my lungs and bones. I initially had breast cancer when I was 49 requiring a lumpectomy and radiation therapy. After treatment I happily went along with my life and I rarely thought about my cancer. And life was good! My husband and I finished our careers, we enjoyed time with our family (daughter, SIL, and two grandchildren), time with our friends and travel. I have always been extremely active and fit but I began to notice I wasn’t feeling quite like myself on my mountain bike and could not ride some of the harder hills I had always been able to ride and it just didn’t feel like getting older to me. Eventually I was diagnosed with metastatic breast cancer and I was shocked as I had never expected my cancer to return. I have been in treatment now for two-and-a-half years. I know you asked for a moment that has stuck with me but my MBC isn’t quite like that as I will be dealing with this forever, there is no cure, just treatment until it quits working. My experience dealing with a terminal illness is more like trying to walk on a surface that is very uneven and challenges my balance which requires me to constantly shift my focus both physically and emotionally to try to find some equilibrium.
I find that at times this can be exhausting because it will be for the rest of my life, this is definitely a marathon not a sprint. I work very hard to be mindful and be in the moment as that is where I find the most peace. Some of these moments are wonderful and some have been tough and surprising. I have found peace and comfort being in nature with my husband whether we are mountain biking, hiking, backpacking, or enjoying a cup of coffee or glass of wine. Feeling that I am part of nature and this incredible universe provides me with moments of peace. Sadly, some moments are rough, I have felt alone even with wonderful support as no one can really walk this path with me and I struggle with FOMO (fear of missing out.). I sometimes describe FOMO as the ghost of Christmas future as I will experience an event that can hit me hard and I feel like I am getting a glimpse of the future with me not in it and it can take me by surprise. This happened one day when my husband was engaged in conversation with a woman we didn’t know about ski trail conditions. Watching him talk to this woman it suddenly hit me hard that this is what it could look like if he meets someone else after my death and I had the strangest sensation of literally being erased by a giant pink eraser. I don’t expect this and it really shook me to my core as it felt like seeing the future without me. I had another similar reaction when my daughter shared a photo book that didn’t any pictures of me, again it felt like a glimpse of the future when there will be family photo books without me.
Dealing with terminal illness is very difficult and I sometimes feel that we hear the stories of the warriors and those who face terminal illness with grace and acceptance. That’s not me - I’m scared but doing my best. I get up every day and continue to participate in my life with both wonderful moments and some awful moments. I have friends, family and neighbors that tell me I’m inspirational but I’m not trying to be I’m just trying to make the best of the time I have left.
REFLECTIONS:
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It’s very helpful to hear how Kathy resists the notion that there be any one particular moment to note, versus an ever-unfurling continuum. She relates to life as one that moves and shifts over time; a tango between inner and outer realities. With this, we get to learn how chronic illness summons a kind of agility. That kind of strength has more to do with allowing for movement and accommodation, rather than attempting imperviousness or immovability.
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Ahh FOMO!It’s not just a hip acronym but a timeless conundrum. This is one of those moments where the love of life can feel like a hindrance. What an image it is to be erased. And, so, Kathy grieves her death while she’s alive, maybe to metabolize her fear, and maybe to appreciate what she still has while she still has it.
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A singular, monumental, developmental life-lesson which death summons us to reconcile is our notions of self and other. It’s so tricky and so important. If the self withers and disappears, what remains? What’s bigger than us but includes us? In other words, maybe we can extend our self-love and self-protection impulse to the world around us. Not just because it’s a kind thing to do, or that it’s a good route to immortality, but because we are actually connected and the lines that seem to separate us are naturally porous.
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Fear gets to have its seat at the table; dining buddies with acceptance. Maybe grace comes from living with the entire composite that makes up the self, not just the pretty or easy stuff. The poet Rilke wrote, I am not saying that we should love death, but rather that we should love life so generously, without picking and choosing, that we automatically include it (life’s other half) in our love.
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And we’re with you, Kathy, it should not be considered special or heroic to face life. Or, rather, whatever our respective diagnoses, facing life—full, unedited life—is hard for everybody if it’s hard for anybody. Our friends and neighbors will find cause to see that same truth someday. And when they do, I hope they’ll extend that same exultation to themselves as they do to “others.”
-BJ Miller, MD