If you've relapsed after you thought you'd been cured, you know what a shock it is. Relapsing twice, after two transplants, turns out to have a surprisingly different effect on Kevin.
Kevin Berry is an 12-year mantle cell lymphoma survivor, in his third remission. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna. He lives in Central Florida with his wife and adult children.
Andrea’s painting was a response to my request for a work that reflects my newest state of mind. Yes, despite an incredibly successful allogeneic transplant in February, 2015; with a 90-plus percent chance of a cure, I have relapsed. This is quite a blow after my confidence and “newest normal” written about a while back. (One Year After Cancer: Another New Normal
When I asked her to paint something, Andrea, in return, asked me to describe my feelings. I wasn’t able to compose a coherent sentence, but rather gave her stream-of-consciousness type information. “I am trying to define a mood I can’t explain well. Scared. Melancholy. Angry. But also determined. Undefeated. Deciding, daily, to live.”
You see, this isn’t the first time I’ve had to readjust my whole world view. The initial diagnosis, back in 2005, was a horrible shock. The treatments, including an autologous transplant, left me in remission, hopefully cured, but with a different body, metabolism, constitution and viewpoint. Then, after I relapsed and endured the treatments (six different attempts at full remission), I rolled the dice and went for the high-risk, high-gain allogeneic procedure. And was, to all indications, cured. “normal round three” was great. At 58, I felt better than I had since I was 45. Beyond the physical wellness, my mind was suddenly free of that incredibly stressful duality we all know so well. I could plan 30 years ahead, without that nagging little uncertainty whispering into the lizard part of my brain.
Then boom: “Normal number four.”
That normal that says, “Well, there’s still lots of hope, lots of science, lots of treatments that people are trying with some success, but you will never again feel cured.” Because, frankly, being told for the third time that you have cancer, well, it pretty much just stinks. Hopefully none of my readers will ever have to find this out in person, but yes, it’s just as bad the third time.
That said, I admit I settled into “Normal 4.0” a lot quicker than the other two times. It was like, “Hey, I know how to do this.” I moved through the grieving stages in days, rather than weeks or months. So Normal 4.0 is now Cancer Normal
. No more duality. No more “maybe some day this will all be behind me.” Now I’m focused on doing more decades with cancer, rather than another intense period of discomfort followed by months or years of wishful thinking. The rhythm of family, work, fun, chemo, family, work, fun beats steadily on. A visit to the infusion center is just another day on Earth, enjoying the blessings God has showered down upon me.
Lest this piece sound like a pity party, please be advised. I’m still on the right side of the valley.
As of today, I’m 3,902 days since my first diagnosis. After 11 different kinds of treatments, I’m 11 years older, and except for that pesky cancer thing, have never been in better health. I am running 5K’s and mini triathlons, training for a half marathon and enjoying my wife, family, friends and work more than ever. My mind is at peace, my spirit is willing, and the race has just begun. If you’ve relapsed, and are feeling like you just can’t do this anymore, I hope you’ll listen to my words: Yes, you can. We can -- together!
Andrea: (About the painting): “I used complementary colors- orange and blue- to emphasize the opposing nature of each scene. I wanted the bottom scene to reflect a fractured version of the top scene. "Normal" is still part of it, but in a new form. The fish is for the feeling of being trapped and dependent (on doctors, medicine, etc). The seedling is the desire to continue living and rise up again. And always remember the Spoon Theory!”
Besides the other wonderful blogs on CURE’s site, I hope you'll visit my Taking Vienna