“Cancer may leave your body, but it never leaves your life.”
The above is from the LiveStrong, the cancer fighting foundation created by Lance Armstrong, Manifesto. When I first read the Manifesto and this line, it touched me deeply because it authentically puts words to the first few years after cancer. And for someone ripped from remission back to the cancer-fighting front, the first half feels like impossibility. But, the empowerment of this line gives cancer survivors the right to feel fear and “normalizes” those five years after cancer.
Upon hitting remission, I was told (both times), that if I made it five years without cancer recurring, the odds of it returning were the same as though I’d never had the disease. The odds moved from likely to remote. The five-year survival rate is the chronologic milestone that demarcates those likely to have a relapse (me) or to never experience a relapse (I guess … also me). The five-year mark is celebrated as a major event by the American Cancer Society and survivors are encouraged to register this with the ACS. (Darn right I did!)
But getting to five years feels like an eternity. For many survivors there are physical and mental challenges along the way. Here are three of the challenges I had to do after learning I was again in remission.
Relearn the body – You know how you can tell when you are coming down with a cold, or seasonal allergies, or acne? To a cancer survivor, the onset of a cold immediately triggers, “Shit! Is this cancer again!?” It’s not rational; it’s a kneejerk reaction, but it happened to me all the time. Here is an example. About a year out from my cancer-free diagnosis, I liked to run about a 1.5 mile loop outside my college dorm. The distance was challenging enough to get me pretty tired and traversed a woods and river – so the scenery could not be beat.
The back half was a rocky climb back to a sidewalk. On one of these runs, I twisted my ankle on the rocks. I heard my ankle pop and could no longer run. I limped back to my room, iced my ankle, and noted the large tennis ball swelling on top of my foot. A couple days later, the swelling subsided, but the ankle still hurt and it was discolored. “Cancer was back!” That is what I thought. I went to my oncologist and proclaimed cancer was back. He gave me some ibuprofen and told me the sprain would heal in a week.
Nuts, right? But, that happened over and over. It could have been a cold, zits, ingrown hairs, blue balls … all of them were cancer returning. I had to relearn all of these unusual symptoms and calm myself knowing that I was not re-experiencing cancer.
Understand the value of time – To say you learn to value time while suffering through chemo side effects is like saying you learn the sharpness a great white’s teeth when it’s biting off your hand. Okay, I couldn’t think of too witty a simile here, but you get the point. I sat in my parent’s living room staring at a wall clock for months while experiencing all the nauseating, mouth-bleeding, bone-aching chemo side effects. During that time, I must have made a million bucket lists starting with just graduate from college.
I still feel that way today. My wife always asks me what I want for my birthday and I always say, “nothing.” Really, the only gift that counts to me is time, just spending time with someone else whether it’s in conversation, teaching, listening, or anything is more valuable than any material gift.
And, I also think of my time as my most precious resource. So, I spend a trip to Disneyland hitting all the rides; I don’t rest till I see all the paintings in the museum, and I must go to “just one more winery” when we are at Napa. (My wife likes that last one). I think Runner’s World Magazine’s Bart Yasso sums it up best, “Enjoy every finish line because one day, you will cross your last.”
I had a therapist ask me once, “What is your definition of enough? When will you be satisfied?” The question came in the context of me trying to rebalance the scale of my life. I have climbed, run, and swam in an effort to recapture my fitness lost to cancer. The answer: there is never an enough. There is never too rich an experience or too little of a task to showcase your best. When taking up activities, I don’t just want to kill time, I want to master it and achieve its highest level possible. Today, for me that is running marathons. To do anything less would be to sacrifice my own time, my second chance.
Meeting in the middle – The few years after cancer, I expected people to yield to my experience. Whether anyone knew of my experience, I somehow expected the benefit of the doubt or a break. I longed for more empathy.
There have been some recent, well-circulated blog postings that discuss how other cancer survivors, “Get it.” Getting it means having the complete understanding of what it is like to face death, fight like hell to escape it, then return to life as though nothing happened. While I am trying my darndest to recreate some of my cancer surviving experience, I cannot fully articulate the complicated emotional mix of fear, gratitude, disjointedness, anger, happiness, confusion, and disbelief. But, I know others who have been here totally understand.
In looking for empathy, I lost relationships, friends, and nearly a job. Early on, I expected my wife to some how, “Get it” when that is just not possible. I take a different stance now – I accept what people can or are willing to give. Not everyone can understand all of this experience, but I can get pieces of it from different places and if someone is willing to try, that is worth as much as “getting it” in my world. When I stumbled into this mindset, I found myself experiencing deeper relationships and fewer barriers. I now go to the world or at least meet it in the middle.
When I look back at those few years after cancer, I relive it as a blue time. Stepping back into my pre-cancer shoes and trying to relive that life was not possible. While I am very thankful that there are many, many survivor resources now, I walked that path alone. And that reintegration forced me to find values that I would not have otherwise.
On my final day of college, graduation, I dressed in my gown and sat in the audience among fellow students. When commencement began, I looked down and began to cry. Then, my sobs became uncontrollable weeping. The two women next to me thought I was nuts, and I had to borrow some Kleenex. I was so happy to finally graduate, and to finally get out of there; I never thought I would live to see that day. When I finally walked the stage, the chancellor hugged me and several professors stood from their chairs to shake my hand. It marked the end of a bitter fight and difficult readjustment.
In a couple years time, I moved to Minneapolis and found my way. I could run four miles and my health, hair, and spirit had been restored. My new doctor, Steven Rousey, pronounced me five years in remission with the same fanfare as when I had received my remission. But this time, I felt positive, like life had started again. Perhaps cancer finally had left my body.