A devastating shock, a miraculous year
Steve Kelly is an Inquirer editor
Today will be a truly amazing Father's Day.
If I burn the burgers, no sweat; we'll order pizza.
If it rains from dawn to dusk, oh, well, my lawn will look great.
A so-so tie from the kids? I'll wear it all day with a favorite, well-worn T-shirt.
You see, a year ago, the odds of me being here today were about one in four. Two weeks after running in the 2013 Broad Street Run at a clip six minutes faster than the year before, I started on a diet of Tums and Alka-Seltzer to quell stomach pains. If it were only that simple. A succession of doctor visits ensued, each more alarming than the previous. Then came the phone call on the morning after Father's Day:
"The diagnosis of cancer cannot be ruled out."
A handful of days later, my wife, Kerry, and I were sitting in a bland consultation room at the University of Pennsylvania's Abramson Cancer Center. "All I want is a chance," I told her before entering the room. A few minutes later, a doctor told us I had Stage 4 pancreatic cancer with spots on my liver. I managed a couple of elementary questions before we fell into silence and the doctor excused himself from the room.
We were expecting bad news, but this was numbing. The car ride home was mostly quiet except for a few words about our daughters, Delaney and Kacey, then 19 and 15. We were determined to keep things as normal as possible for them. We would attend two graduation parties the following day.
So began a year as a cancer patient that I doubted would last that long.
I got to work quickly, trimming back my bucket list and planning my funeral. Where should I have my ashes sprinkled? But a funny thing happened on the way to the cemetery. The funeral procession stalled.
Today, I marvel that I'm still here. I credit a blend of dumb luck, divine intervention, the wonder of science, and, above all, people power - an army of brilliant doctors, caring nurses, devoted friends, and loving family.
It took the better part of the last 12 months, but I've come to grips that there's no explaining my illness. I'm a fit 54, a nonsmoker who is a model of moderation, chocolate chip cookies and chocolate shakes aside. I fully understand that my good fortune could be running out right now, but I've learned to live with that reality. I can even go hours without thinking that I have cancer. Those are the best times. I am not afraid of dying, but the thought of not living frightens the hell out of me.
A week before that stunner at Penn, the doctor who performed my biopsy set the stage for my assault on cancer. She knew the odds were stacked against me even before I did. "Whatever you do, go aggressive," she said, frightening the hell out of Kerry. But at least we had our marching orders. Today, I am grateful she didn't mince words.
We were exploring treatment options at regional hospitals when I divulged my illness to Inquirer editor Bill Marimow. He put me in touch with a friend of his, Bert Vogelstein, a world-renowned cancer researcher at Johns Hopkins Medical Institute in Baltimore.
Dr. Vogelstein and I talked on the phone for about 10 minutes. He did most of the talking. In a weeks-long daze, I did my best to follow along. He mentioned a promising vaccine under development at Hopkins that caught my attention. My Stage 4 cancer was not a perfect fit for the vaccine trial, but it offered a sliver of hope down the road. For the first time in weeks, I talked to a medical professional and thought about the future. But first my cancer had to be knocked down a peg or two.
I heeded my biopsy doctor's advice and joined an uber-aggressive clinical trial at Hopkins that consisted of three standard-of-care chemo drugs and a fourth, Cisplatin, that was not typically used to treat pancreatic cancer. It didn't take long before I began feeling the ill effects from being infused with the toxins two out of every three weeks. Digestive issues and fatigue made life miserable. I went a week without sleeping because of a reaction to painkillers. Walking down our driveway to retrieve our newspaper left me breathless. My appetite waned, despite Kerry's best efforts to cook something, anything, that appealed to me.
In late July, after my second cycle of treatment, I could barely lift my head off the pillow. Weakness ran down my neck and shoulders. Then the cavalry showed up at my home in the form of three friends who have known me since I sported a hairstyle like Bernie from Room 222, the 1970s TV series. We didn't do much that day. We lounged around, watched the British Open, had a bite to eat, and engaged in some typical verbal jabbing. Somehow, it did the trick. The next morning and each morning thereafter, I slowly regained some strength.
By the time I made the trek to Baltimore for my next treatment with a friend who was accompanying me, I was feeling combative. I blurted out, "Why not me? Why the f- not me?" When a nurse started my chemo drip that day, I cheered on the drugs.
Acts of kindness carried us through the summer and into autumn. Full-course meals awaited us after 13-hour treatment days. Friends pitched in on yard work I wasn't up to. My deck was even refinished. Seven hundred miles away, upward of 30 in-laws and their friends donned #KellyStrong T-shirts and ran in a half-marathon in Grand Rapids, Mich. Talk about a shot in the arm, the uplifting type.
All the while, my body seemed to come to grips with the new normal, and, thanks to my clinical nurse, Ellen Lilly, I gained a better understanding of how to manage the side effects caused by the chemo, painkillers, and antinausea drugs. I am grateful she was assigned to my case. Beyond all her expertise, she possesses a gift any superhero would envy: the ability to say the right thing at the right time, every time. Imagine that.
Our brutal winter was especially hard on me. My illness and treatment left me anemic and chilled. I wore layers - in the house. Watery eyes and a runny nose developed into a two-night hospital stay. I felt so lousy, I was actually glad to be there. Worst of all, the chemo depleted my immune system, and I was forced to forgo dosages of the drugs that had been producing excellent results.
My tumor had been reduced in size as much as 80 percent, and my doctors, Zheng Lei and Dung Li, informed me that, fortunately, my tumor was on the outer edge of my pancreas and the organ was functioning properly. I informed them that I had stopped taking my painkillers several weeks earlier. The doctors managed my care, lowered my dosages, and got me through the winter.
Springtime brought another round of CT scans. A feeling of apprehension always permeates screening days, but this one brought a little added stress in the wake of my aborted cycles and reduced dosages. Then my doctor reported, "The tumor is invisible on the scan. It's a complete response." Talk about a tension-breaker. Why not me, indeed. Tears, hugs, smiles, and joy filled the room. I couldn't help but think of that numbing day last June.
Over the next eight weeks, I regained much of my strength. Walks became walks/jogs, then jogs. In late May, with friends and family at my side and a boost of adrenaline, I ran a 5k with my younger daughter for the third year in a row. That she whipped my butt didn't seem to matter as much this time.
Shortly after the 5k, I started in the vaccine clinical trial that motivated me 11 months earlier. It employs dead cancer cells and a bacteria found in listeria to rev up my immune system. The science is astounding. I have faith in the doctors who have gotten me this far and that, sooner rather than later, these dedicated professionals will develop cures for cancer. I would love to be here when it happens.
The last 12 months have been illuminating, to say the least. Coping with cancer is truly life-changing - you hear, see, and feel everything differently. I believe that I now treat people better today than I did a year ago; you never know what issues the person in the car next to you or in the grocery line ahead of you might be contending with.
As for the immediate future, I won't be adding to my bucket list. By all means, I understand I remain a cancer patient. I've simply repelled the enemy within for the time being. I'll be quite content if I get to move Delaney in for her junior year of college and watch Kacey give opponents twice her size more than they can handle on the athletic fields. Chopping down another Christmas tree would be pretty cool, too. I better not get ahead of myself, though. I have some burgers to grill.