Those of us living with metastatic cancer ride a see-saw between hope and acceptance.
Tori Tomalia is a two-time cancer survivor currently living with stage 4 non-small cell lung cancer since May of 2013. Her first cancer experience was childhood osteogenic sarcoma, for which she received chemotherapy and curative surgery, and had been cancer-free for over 20 years prior to the lung cancer diagnosis. Along with cancer, Tori juggles life as a mom of 3 small children, a wife, a theatre artist, writer and lung cancer awareness advocate.
When I was a kid, the playgrounds had the wonderfully simple see-saws that were nothing more than a plank of wood over a pivot point. We would play a game where one person would be all the way down, and the other all the way up. That child would say,
"Farmer, farmer, let me down!"
The other would respond,
"What will you give me, Charlie Brown?"
And then a negotiation would ensue, with poor Charlie trying to get back down to earth. If the Farmer chose to, she could jump off the see-saw, sending Charlie plummeting into the hard cement. Ah, childhood.
As a metastatic cancer patient, I ride a see-saw between hope and acceptance. Thankfully, on my current treatment, there are days that feel almost normal, where cancer takes a back seat and it easy to hope that this could go on for some time. Then, of course, there are days that the knowledge of what I am facing leaps into my face and refuses to be ignored. The unrelenting nature of this disease can feel just enormous. Month after month of medications, scans, lines of therapy, side effects, weighing pros and cons of treatments, decisions and difficult choices, marching on into eternity. It's why the battle terminology rubs a lot of stage 4s the wrong way. Fight as we may, our "war" doesn't have a clear victory at the end. This is a marathon that lasts a lifetime, and the finish line is six feet under.
Much has been written about the danger of false hope, about of the importance of accepting one's diagnosis and prognosis. I think doctors fear we don't understand the gravity of what we are facing, but perhaps they don't fully understand the sensation of sitting at the end of a miles-long see-saw, suspended stories above the earth, waiting to crash down.
The cancer has spread to your hip, your ribs, your spine and your liver.
Surgery is not an option.
There is no cure.
"Farmer, farmer, let me down!"
I have come to believe that hope is vital for those of us living with metastatic cancer. Without hope, the weight of our truth becomes too much to bear. I think there is nothing wrong with hanging on to a ray of hope to beat back the fear, to let you down more gently into acceptance, to, in the words of Dr. Martin Luther King, Jr., "hew out of the mountain of despair a stone of hope." That's one doctor that understood the power of hope! Hope allows us to dream of what might be. And dreams allow us to survive this nightmare.
Stage 4. Metastatic. Terminal.
Fear that every ache could be progression.
Another friend lost to cancer.
…and then I meet someone who has been living with this disease for over nine years.
… and I learn of a promising clinical trial.
… and I meet a stage 4 lung cancer survivor who has been off treatment for two years.
And I am lifted back up, Charlie Brown.
I am well aware that everyone's case is different, but hope softens the crash of acceptance. Perhaps there is a way to get that see-saw to balance acceptance of this disease with hope for more time here on earth. I strive to find that equilibrium.
Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to Cancerland. Stay tuned for her continued adventures.You can follow her blog at "A Lil Lytnin' Strikes Lung Cancer."