Terminal illness is like watching a bus barreling toward you and you're stuck in the road. The least you can do is make the wait enjoyable.
Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.
There are lots of ways to refer to what I have. Stage 4 cancer. Metastatic breast cancer. Advanced breast cancer. Frankly, I don't like any of these labels. I'd rather say, "I'm just a touch under the weather. Give me a sec, will you?"
But still, these are the official names of "oh, crap, it's bad" cancer. Does it matter how I refer to my disease? A study I read recently says, yes. In the study, the group referring to themselves as having metastatic breast cancer had slightly higher survival rates than the group referring to themselves as having stage 4 breast cancer. I know for me that the term stage 4 has always meant imminent and fast-approaching death, so I tend not to use that label. If asked, I'll say I have metastatic breast cancer. It's the label I prefer.
Lately though, I treat my disease as if it is an unpronounceable name; like the Judaic Yahweh, so beyond any human's understanding, that even a label couldn't begin to capture the essence of God. But instead of this disease being so grand in my mind, it is so frightening, the words sticking in my throat in an attempt to not talk about it at all. If I don't say the label, but merely motion toward it, I don't give it the chance to terrify me yet again.
It took me a long time to realize that several people assume I am going to die soon. A look in someone's eyes, a sudden changed experience with that individual and it dawned on me, "Oh, they think I'm going to die." Luckily I hadn't been thinking that way at all. I still can think of myself turning 70 or even 80. I continue to look down the road to what life will be like when I am older (I am aiming for 60 myself, which would be a miracle with metastatic breast cancer). It just never really struck me that I was shooting down an immediate path of death. I do think of dying here and there. But that stuck in the craw thought of, "you're going to die real soon" just wasn't happening for me, thank God.
Recently I watched an interview with Michael J. Fox
. He was describing what it was like to live with Parkinson's Disease, comparing it to freezing in the middle of the road as a bus hurtles toward you. That is a perfect image for this disease. Frozen with a bus coming down on me.
Here's the challenge. How do I live with that bus on the horizon? Lately, I've been staring at that bus, looking for some sign, some clue. Will the bus hit me hard now? Or will it clip me and leave me disabled and dragging through the rest of my life?
I've talked to people who, although they've survived for years with metastatic cancer, talk only about what they can't do or what they can't have. I've gotten a taste of how hard this journey is going to be. I'm scared of what comes next. But, frankly, the bus may never hit me. I know the odds are low, but I might die many, many years from now of a standard heart attack. So I may live for years with this disease, and I don't want those years to be me focusing on what I can't do or what I can't have.
Yeah, my feet and fingers continue to be neuropathy numb. Yeah, I get up in the morning, or push myself off the couch, and I'm sometimes waddling sore. I admit I'm chemo fatigued. But you know what? I keep pushing myself off that couch. When I see something on the floor that needs to be picked up, I make myself bend over to pick it up because I don't want to live in a littered house, and bending over will give my legs and hips a stretch. At night, when I lift Pearl, the miniature schnauzer, onto the bed, I pause and lift her above my head several times to strengthen my arms. It might sound stupid, but it's my way of taking it slow, and I figure if I do little things along the way, I'll build up to bigger things down the road.
I remember when I was in Barbados years ago, there were two types of public buses. One was a government-owned bus, plain blue, simple, gets you around. The other was a privately-owned bus, tricked out with decorations, raucous, packed with riders, leaving only standing room in the aisles. The bus I chose to ride was the 50 Cent bus, decorated with oversize images of the rapper, his music blaring loudly from speakers above the riders' heads. Ice cream in hand, I rode that bus standing, hanging on to the overhead railings, leaning into the curves as the bus careened around the island's twisting roads. That was an alarmingly fun ride.
So maybe that's the bus coming toward me. Loud, glittery, careening around the curves. At least then when I stare at the bus, I can listen to the music, see the sparkling decorations, and enjoy the raucous crowd taking the ride. It sure is better than thinking of death.