By BRIAN BLUMUpdated: AUGUST 18, 2018 16:32CANCER PATIENTS sit in a chemotherapy ward while receiving treatment at the Korle Bu Teaching Hospital in Accra, Ghana, in 2012qq(photo credit: OLIVIER ASSELIN/REUTERS)
Cancer isn’t what it used to be. Increasingly, researchers are no longer searching for a cure but for ways to manage this once-dreaded disease over a lifetime.Indeed, with new treatments showing such great promise (Gilead’s stunning $12 billion acquisition of Kite Pharma, which commercialized an Israeli-developed immunotherapy treatment called CAR-T, being perhaps the most dramatic), more and more cancers are becoming essentially “chronic conditions” – incurable but treatable, akin to diabetes, heart disease or even HIV, which used to be a killer but is now surprisingly survivable with the proper chemical cocktail.“With regards to a cure,” Dr. Lisa Coussens of Oregon Health and Sciences University told the American Association for Cancer Research’s annual conference in April, “it’s really not a realistic goal.”Coussen’s prescription: “Live with disease and live your life well with that disease. It’s a major shift, but a tremendous goal.”Not every cancer is a candidate for this new status, of course, but mine is. The black humor among fellow patients is that “you won’t die from the lymphoma; you’ll die with it.”Another well-worn line that’s meant to evoke a wry smile (I’ve even heard it from my doctors): “If you had to get cancer, this is a good one to get.”Chronic cancers ebb and flow, although rarely without treatment, which often involves chemotherapy and other meds that are a whole lot tougher on the body than, say, a simple course of antibiotics for a recurring head cold. The upshot, though, is that people are surviving – and even thriving – for decades with the Big C.Cancer’s new chronic status throws into disarray much of standard language that’s evolved around the disease. You are supposed to “fight” cancer until you “beat” it, but chronic cancer never goes away. It may slip into remission for a while – sometimes years – but it’s always there, lurking in the background.You find yourself worriedly scanning your body for signs that something’s off. Is that a lump? Did I work out too hard today or am I just cancer-fatigued? When’s my next PET CT? You calm yourself by intoning, “It’s no different than any chronic disease,” but it’s still, you know, cancer and that carries a stigma, even today.A colleague whom I’ve never spent time with socially offered to come visit. It took me a while to figure out what he probably thought: It’s cancer, he’s going to die.
People with chronic cancer and other conditions can be racked with guilt. The website The Mighty.com compiled a list.“I feel guilty whenever I feel like I’m enjoying myself,” wrote one person. “Like, ‘you’re chronically ill so you can’t be allowed to have good days or else people will assume you’re better.’”“I dread going to the doctor,” said another. “I hope I have enough symptoms to have them believe me and take me seriously. But I don’t want enough symptoms and hurt going on to warrant a crash.”Part of the confusion is that with the classic stereotype of cancer there’s an “expiry” date. “You’ve got six months to live. Make every moment you’ve got left count.”But with chronic cancer, there’s no unexpected early ending to prod such personal transformation.So, do you just continue with what you were doing before, punctuated by trips to the local hospital daycare ward for the occasional IV?MY WIFE Jody has remarked that I’ve been operating at 99%, even during chemo, barely braking and keeping up with my routine.But make no mistake about it, I am sick. In remission, not in remission, from the day of my diagnosis forward, I will always have chronic cancer. It’s become part of my identity and the number of good days I’ll have over the long term is definitely less than it was BC (before cancer).Mindi Boston writes on The Mighty website about how her own chronic illness “may not define me, but it defines how I have to live.”Yet therein lies the “blessing” of chronic cancer. (Not that I would ever wish such a “blessing” on anyone – let alone myself.) But knowing – not just as a cognitive exercise but deep in your kishkes through lived experience – that health is not a given can help you appreciate the good (when it comes) that much more.Stacey Kramer survived a brain tumor. She described it in a TED Talk as a “gift” that will have you feeling “loved and appreciated like never before… challenged, inspired, motivated and humbled.”Psychologists at the University of North Carolina at Charlotte coined a term: PTG for “post-traumatic growth.”I’ve had my own moments of PTG.The night before my fifth round of chemo, Jody and I went out to eat in Jerusalem’s Mahaneh Yehuda market. We chose the popular Pasta Basta, which always has a long line of eager young noodle nuts. I put together an odd mix: cheese and sweet potato ravioli swimming in a coconut curry sauce.I was blown away by how incredible that evening was. Everything about it – the flavors in my dish, the parade of people, the sounds of the shuk – was heightened.I knew as I was experiencing it that the hour was fleeting. The next day, I was subsumed again by the familiar aches and pains. But I could still savor how I’d maximized the moment.I find myself returning regularly to that accident of attitude as I navigate the strange new world of chronic cancer. The writer’s book, Totaled: The Billion-Dollar Crash of the Startup that Took on Big Auto, Big Oil and the World, is available on Amazon and other online booksellers. brianblum.com
