Life with MBC
We all know the stories of the hospitals. We know the clinics and the hormone receptor status. We've heard of the medications and the schedules, but few know or care to ask about the odyssey we live between the days cloaked with hospital gowns or visibly speaking out for better and more for the metastatic breast cancer population we unwillingly found ourselves a part of.
Living with metastatic breast cancer
So, what is it like to live with metastatic breast cancer on days where the internet is unplugged? The days when we are people living in spite of, as much on our terms as we can bear. What is it like to live with MBC beyond the stories we tell that are because of the disease? What does it look like to live in spite of it?
A good day in spite of MBC
Imagine being in the car on a perfect spring day just enough of a breeze where it’s not quite cool, but the brazen sun is still shielded, not quite yet permeating the windows with the warmth of summer. The breeze blows the small hairs that fell out of your ponytail and as you swoop them back behind your ear, you wonder if anything will ever feel as good as today.
Riding beside you is one of the best parts of your world, the person who made last night worth pushing through nausea and the tears that you rarely acknowledge, but have become silent side effects of your treatment. You imagine getting old with your person still by your side; sometimes singing along, and sometimes sitting in silence with nothing more than the occasional smile or sound of the road under the tires to remind you that these are the moments you are living for.
They begin to speak, recounting the day and reminiscing about times before; days like today where the sound of the road became its own symphony. Times you may not remember but at the same moment will never forget.
When they look back on today, they won’t see your pain or your nausea, or any other piece of you tainted by cancer; they’ll think of days like this before with you smiling and singing in the car, unknowing the voice screaming in your ear screaming to your mind..."IS THIS IT? WILL THIS BE THE LAST? WHAT IF EVERYTHING CHANGES? WILL MY PERSON KNOW THEY KNOW THEY FILL IN ALL THE SPACES WHAT I NEEDED TO BE WHOLE; A VERY DEFINITION OF A LIFE THAT IS GOOD?"
You silently remember how you felt that day last year. You kept to yourself how much pain you actually felt, much like today. You kept the anxiety of the scan to yourself, the pain from the progression, and the fear of the change in treatment it was to bring, much like today.
Brokenness can feel complete
Still, today was perfect in spite of brokenness, and today I’ve never felt love so complete. Today I felt whole again, but regardless of how I feel, the truth is when I go to bed tonight, I’ll still have cancer. I still feel incomplete. I’ll still wonder if the future I saw so clearly today will be real, or just a really poetic dream.
So, you stay silent; and instead, sing along with the radio. After all, the pills aren’t for telling stories of tragedy on perfect spring days. They are for experiencing life in-spite of tragedy and pain on perfect spring days. They’re for living like the cancer isn’t real though it very much is. They’re for blocking out and flexing a tinge of discomfort manifesting visibly on your face into something mimicking a slight smile.
Then your person says the words; “we have to do this again...” & again - I want nothing more. Will my pain be less? Can I throw the pitch? Can I leave my inhaler in the car? Can I still ride in the car? Will there be days like today?
Perfect. Spring Days; Again. I want nothing more than the word “again” to become the anthem we sing years from now; riding down country highways on perfect spring days. Days where there is just enough of a breeze where it’s not quite cool, but the brazen sun is still shielded; not quite yet permeating the windows with the warmth of summer. Where the breeze blows the small hairs that fell out of my ponytail and as I tuck them back behind my ear; I wonder how many more days will ever feel as good as today.
Caregivers: Do you practice self-care?