Inspired by Kathleen Quigley’s A Cancer Lexicon
Alone – From the beginning, it’s what you promised your son he would never be. By himself at the hospital. Left to face his fears in the middle of the night. At the mercy of his side effects or his pain with no one to rub his back or hold his hand.
Bald – Born with a full head of dark hair, you’d never seen him bald until the radiation caused it to fall out. Smooth as silk and warm to the touch, his naked head got so cold in the damp Oregon winter.
Celebrex – The first medication denied by the insurance. Replace it with a low-cost non-steroidal anti-inflammatory they insisted, as if any drug would do, instead of the one used in the clinical trial. The first fight won when you refused to take ‘no’ for an answer.
Devastation/Despair/Depression – Emotions you had never experienced before your first born child was diagnosed with brain cancer. This dark trio turned your world dark gray and cold. The weight you dragged behind you as you fought your way back to the light.
Escape – What the four of you did as often as you could. Italy. The Tour de France. The Oregon coast. Rock concerts and Blazer games. Any chance to get away from all things cancer and be together as a family.
Fever – The big bogyman after treatment. The canary in the coal mine, warning of an infection in a chemo-weakened body without the normal defenses to fight it. Fever meant hospitalization. Fever = fear.
Golden – What your family was before your beloved boy’s diagnosis. When you thought you were “living right” instead of just lucky. The time before you learned we are all just a phone call away from being brought to our knees.
Hope – What you clung to on the worst days. Hoping for a cure. Stable scans. A new treatment that worked. More time. Minimal pain, no final hospitalization, a peaceful passing. A good thing, maybe the best thing. The thing that didn’t die until your son drew his last breath.
Insurance – Dealing with it became your second job. Denial, denial, denial. “Mistakes” you had to fight, random refusals that had to be rebutted, disallowed drugs that could save his life or make the days bearable. A surprisingly productive way to channel your rage.
Joy – What cancer taught you to pursue instead of happiness. Summer sunlight dancing on the ocean. Yummy homemade meals delivered with love to the doorstep. Big belly laughs. A nausea-free day. Seeing your son’s favorite nurse Katie. Every moment together.
Kindness – You never noticed how much existed until your beloved boy’s diagnosis. The way it can appear out of nowhere from unexpected sources on the days you need it most.
Lance Armstrong Foundation – What got your child out of his hospital bed and onto a bike after the brain surgeon removed a golf ball sized tumor and onto a bike. The cancer survivors and staff who offered him a chance to make a difference, to find his voice. Your community, your chosen family. A way for all of you to live strong.
Metastatic – The moment you realized the cancer couldn’t be eliminated, that there would be no cure. How? you asked. It only takes one cell the doctor said. The beginning of the end.
Nausea – The fierce adversary determined to keep your son from eating, keeping his meds down, functioning in the world. Easier to conquer early on, we had to find new tools towards the end.
Oncology – The dream team, led by Dr. Nicholson. The people who fought to save your boy’s life, as if he were their own.
Ports – A port-a-cath in his chest the first time around. A Hickman port the second. PICC lines in his arm. Ever present reminders of how tethered he was, how tethered you all were.
Quack – The hospital-assigned pediatric neuro-oncologist who waited four days to meet with you and your husband after the emergency craniotomy. The one who told you he’d be deaf, sterile and cognitively impaired when she got through with him. The one who said he’d never finish high school, never go to college, spend the rest of his life being taken care of at home. One of the people you most wanted to call after your boy got into Stanford.
Radiation – The treatment you wished you could refuse. The one you couldn’t bear to think about as it was happening. The one that gave him the best chance to survive.
Simple – With cancer, your vision clears, then narrows. You see what matters and what doesn’t. Who leans in, who shows up, who walks away. The ones who behave badly. There’s no room for that any more, no time to waste and you have no more f*cks to give.
Thalidomide – The legendary drug that destroyed developing babies in the 1950s. A key element of the five-drug combo that kept your son’s cancer at bay for years.
Undefeated – Your boy was a great sports fan. He knew that all the best coaches never say they lost a game. Cancer didn’t defeat your brave boy; the clock just ran out on him.
Valiant – possessing or showing courage or determination. The definition of #JimmySTRONG
Weed – The key to controlling his nausea during the final months of his life. One or two puffs and poof! The miracle you didn’t know existed.
X-Box – A way for your boy to be with his best friends. A thread of normalcy woven throughout.
Y – Why us? But when you said that to your wise boy, he smiled sweetly and said, “Oh mom, why not us?
Zebra – What you hoped for when there was “something” on the scan a year after initial treatment ended. After all, common things are common, just as the doctors say. Recurrence was the horse. Zebra was the prayer that went unanswered.
Oh Margo, this is brilliant. Heartbreaking. Heartbreakingly brilliant. I love you and your big open heart. ❤️