“I live my life like there’s no tomorrow.” – Van Halen, “Running with the Devil”
Some cancer patients call it bargaining with God, and I certainly did my share of it at first. But then I thought, no, that doesn’t seem quite right. Cancer feels like it’s more of a gift from the devil. “Oh, you thought you deserved easy, did you?” he sneers. “Let’s see how easy it is for you to praise God while you’re hovering over a toilet puking your guts out and in so much pain you can’t move, you idiot.”
So instead of me pleading to God to just give me one more shot, I decided to put on my heels and take Lucifer for a spin on the Strip. “Just give me enough time to see my daughters make it to high school,” I said as I leaned over the craps table. “Only if I give you recurring nightmares,” he replied as he pushed the dice my way. Next casino over, I saw I had a good hand at the poker table. “You really think I’ll let you start thinking in year long increments now?” he asked from the dealer’s chair. “Yeah, I’m feeling good about my hand,” I replied.
God and I didn’t have much dialogue at times. It was more of a dance between me and Diablo. Three months? Doable. Three years? Possible.
Do I still bargain with him at times? Of course. It’s less frequent now, but in the times where I’m reminded of the fleeting nature of my mortality, Ol’ Beelzebub pops up again.
“Hello, old friend. One more spin on the roulette table?” he wagers.
I’ve been fortunate enough over the years since I became a patient advocate to be a resource and an understanding ear for many patients and caregivers. They find me in numerous ways – sometimes its through my work with KCCure, but often, someone gave them my name or they found me online through Facebook, Instagram, or even right here on the blog. Some of these fellow players on the team no one wants to be drafted for have become close friends, but I have felt a tender endearment for them all. The problem of course with developing these attachments is if they pass away, it cuts me deeply. I feel it personally. It gets me emotional to the point of despondent at times.
I know it is sometimes a cause of frustration for my family. I have sat at dinner or in the passenger seat, furiously texting away to someone who, at that moment, needed my undivided attention. I once stepped out of a concert to comfort a woman a state away who was at her mother’s hospital bedside and hysterical because the doctors weren’t answering her questions. Her English wasn’t strong enough and they kept brushing her off, so I had her hand me over to the lead nurse and I pestered them until they gave me answers I could work with. I have been on vacation and on my phone for hours, giving advice, reading scan reports, and sharing my own experience so they could taste a morsel of hope. I have flown away for days at a time to give speeches or to serve on research panels, selfishly invested in my own survival.
I say none of this to brag. I do most of my work quietly, because there is no fanfare in cancer. There’s nothing glamorous about feeling the weight of fatigue so heavy, you’re not sure if you can get out of bed today, or discussing side effects with frustrated patients. I say it because sometimes I have been asked, when will this be enough for you? When will you start living your life again without thinking of cancer?
And the truth is… never.
It is a part of whom I am now. It has marked my psyche just as much as it has marked my body, both inside and out.
I remember the hopelessness, the despair. The belief that this would be my last fall, my last Christmas, my last year. The two survivors my friend Laura connected me to were my lifelines, my dangling strings of hope over the alligator pit. “If they can do it, I can do it,” I screamed at the Enemy, swinging from side to side of the pit. “You’re not going to win this time!”
When I was laid off, I debated my decision to be so public about my diagnosis. When you Google my name, it quickly becomes apparent that I am a cancer survivor. Even though I’m over 4.5 years out and I’m in remission, what would a prospective employer see? Would they view my resume, or view me as a liability? I wondered if I had made the right call, or if I would be reduced to a disability.
But I remembered that if it weren’t for Google, how many patients at the end of that rope wouldn’t have found me? If my grant review work funds the next discovery that gives us all more time, is a blemish on my hireability worth it?
Yes, I thought. Yes, it is.
I don’t have much to leave behind to this world. I have my daughters, of course, but I have not scaled a mountain, or painted a masterpiece, or wrote the next great American novel. But, perhaps, a piece of me is left behind in each patient or caregiver I talk with. Perhaps one day when I’m gone – which if I beat the dealer in these next few rounds of Blackjack will be far, far in the future – each of these pieces will be put together to make a mosaic. May I have been the walking embodiment of hope for these patients and their families.
For some reason when I was a child, I was determined to be in a textbook one day. I was obsessed with the idea that I had to achieve something extraordinary in order to not be forgotten by history and the passages of time. “I’ll become an astronaut,” I thought. Then, it was, “I’ll become the next Molly Ivins.”
But maybe I didn’t need to sail to the moon or become a silver tongued opinion columnist like my idol Molly. Maybe I had to take my greatest pain, reach deep, and paint my masterpiece.