The Balancing Act
Today, I want to touch on a difficult aspect of getting cancer. One that particularly impacts the quality of life of those living with metastatic disease.
In 2026, it is increasingly common to receive a stage 4 diagnosis, be considered terminally ill, but continue to live while being plagued by metastatic breast cancer. Even in cases like mine - I’m living with terminal mets, but my actual expiration date is completely unknown at this point, and at least as of the writing of this blog, I am still very much alive, and I remain a fully functioning person. One wants to be very grateful for this, but in all honesty, this is a very challenging place to live mentally. That I have remained upright and operational despite my diagnosis has not saved me from the mental and emotional crises that I had in 2020 when I first became stage 4, or when I was told that I had weeks to live in 2024 when it got into my brain. My functionality did not make navigating this experience any less traumatic, but somehow, getting up every day and forcing myself to fixate on a goal or give myself something to work towards has helped to focus and discipline my mind. Fighting hard to remain in control of my body has fed some semblance of motivation for me to keep exercising my will. I see people dying of this disease all around me all the time. I know what my fate is supposed to look like. I am clear that getting breast cancer in your leptomeningeal membrane is a rapid death sentence, yet I’m simply not dead, but I’m aware that according to the statistics I should be. How does one make sense of and further… how does one continue to move forward in life when all things ahead look like your funeral?
Living with metastatic disease is an interesting balancing act of maintaining hope and managing expectations. I find myself often saying things like, “well, you know, I may not be here then…” while I’m simultaneously trying to buy plane tickets or plan anything. Anytime I’m fantasizing about any future goal or exciting endeavor like starting my company, planning a party or a visit from a friend, or fantasizing about remodeling my house, my musings are intruded upon by hijackers like “ What if I pay for all the (Fill in the blank) and I die”, or “but, I’ll probably be dead before they/I/whomever gets here or finishes it”, or the best one “there is no point to this anymore cause I wont live long enough to enjoy it”. This reality makes living in a chronological timeline difficult, and it makes enjoying life's little joys harder because your energy is zapped by the worry, rumination, and the stress of navigating all things involved in keeping yourself sucking air, and you find yourself more depleted and more and more psychologically isolated from other people because you can’t operate the same way that they do; You get sick of hearing yourself talk about the only thing you can think about which is cancer; you get sick of the look of either pity or annoyance on other peoples faces. After feeling perpetually misunderstood, given advice that does not apply to you, or just simply feeling out of place in the normal world, you retreat to your aloneness; tired of pretending or faking or feigning positivity, and you just keep floating in the vague sea of uncertainty under the division between the moon of perpetual death and the glare of the life-giving sun. Your body keeps breathing in life, but your mind observes every exhale like it’s the last breath you’ll take. Surprised every time it isn’t.
I get invited on weekend getaways with friends all the time. Do not get me wrong, often, I would love to go, but I get held up by worries about something happening to me while I’m out of town, not being able to get back to my local hospital and medical teams, and being out of the routine that I know keeps my side effects in check, my sleep in order, and protects me from anxiety. I have certain limitations that my friends don’t have that affect everything about adventuring. What if I faint, shit my pants, or have a seizure and Erik isn’t with me? Will I be humiliated? Or worse, will I ruin everyone else’s time, and will I be a burden?
The conversations one has with themselves about all of this complicates living. As if life wasn’t complicated enough, but still, in the subtle mind lives the hope that you will indeed live another day, that you will in fact enjoy your loved one’s wedding or graduation, that you will still see another sunset in the French countryside. That maybe they will cure breast cancer, and that you will someday enjoy showering in a newly remodeled bathroom that makes you feel like you finally arrived, are in fact an accomplished adult instead of a struggling basket case, and that there exists some evidence in the tangible material world that you’ve succeeded at something and made something of your life!
So how does one do it? How does one make meaning, foster motivation, and keep living? For everyone, it is different. For me, though, it is self-compassion. It is spending time in the vast wilderness of my experience and tending to the garden within me. Acting on determination, but also on the need to retreat and rest. Overall, I balance myself between hope and realism, grief and the next indicated step, but ultimately I have a deep-reaching subscription to the magic of the universe and my place in it. I have a deep trust in the purpose of my life trajectory. Though I don’t like some of the things that have transpired in my life, I trust their wisdom, and I practice self-acceptance and self-forgiveness. When I am distressed, I feel my heartbeat, and I know that I am alive. When things get to be too much… When I get dysregulated, and I lose my direction… When all feels lost, I return to the present moment. I rest, then ask myself, “What is the next indicated step?”, and at any moment that is all I need to know.