I remember when Valerie Harper was diagnosed with metastatic lung cancer to the brain in 2013. Nasty diagnosis. I know for me, I wondered how long she'd survive. But Harper took a different view than everyone else. “Don't go to the funeral until the day of the funeral," she stated. And that's how she lived her life, until she finally succumbed to the disease in 2019, 6 years after her original metastatic diagnosis.
Words matter. How we talk to ourselves and others about the disease make a difference in how we experience our own cancer, how others experience our cancer. When I was first diagnosed with metastatic breast cancer in 2012, my father and brother both began calling me once a week, an unusual occurrence since I never heard from my father and rarely heard from my brother. Both men are doctors and I assumed they were calling out of guilt, offering belated support. It took me several years to realize that both men likely were calling out of guilt because they assumed I'd be dying, soon. Thank God I didn't realize what they were probably thinking. Because my own belief that I'd survive was key. If I had believed that I was going to die quickly, that would have increased the odds that I would have gone ahead and indeed died soon. No guarantees. People do survive in spite of what they believe. But it sure does help, when the chemo is going in, to think that somehow, some way that chemo will kill the cancer and help me stay alive. It's certainly more pleasant to go through chemo that way.
So I tell myself and others that I live with cancer. And with that in mind, I change as many of the cancer words that I can. When I go to treatment, I say that I am going to spa (this can be confusing since I've had many believe I was literally going for a spa day with clay masks and massages). When scans find a new area of cancer, usually this is referred to as progression in the medical profession, evoking images of the cancer uncontrollably spreading, eating the body away. But I see cancer more like something that can come and go. In the world of multiple sclerosis, the phrase used when the disease recurs is "flare up," indicating there are times when the disease comes and times when the disease is more subdued. So flare up is the term I use when new spots are found. With good treatment, so far, these spots have been knocked back and I have been able to go back to living life.
Definitely, there are cancer patients who are diagnosed and they quickly decline and die. But research has progressed to a point that there are many Stage IV cancer patients who do comparatively well for years. As one oncologist put it soon after my diagnosis, doctors just don't know how a patient is going to do after cancer is found. It depends on the biology of the tumor and the biology of the person with that tumor. I know people with metastatic breast cancer who are still doing well after 20 years. It can happen. My challenge lately has been that after 10 years of living with this disease and a recent flare up, I'm wondering if my time is up. I gotta tell you, thinking that I might be about to decline and die is not a fun way to live.
An ex-boyfriend of mine had a grandfather who was diagnosed with cancer and believed he was going to die, so decided not to waste money and buy anything new. For 20 years that man did not buy anything new. Twenty years. I still wonder to this day if that included not buying new underwear (I do hope he did). Can you imagine though, living life believing you're imminently going to die, so you sit down and decide to stop living while you're still alive? That's not how I want to live. Yet I find myself lately basically doing just that. I've started to wonder whether I should renew subscriptions, whether I should plan a trip, whether I should adopt a new dog once my 16-year old Chihuahua passes on.
So once again, I have to figure out how to live with cancer, in spite of a recent flare up of spots on my ribs (these were treated with Cyberknife radiation). I need to evict the death knell from my own head. I need to think of these last several months as a flare up that has responded to treatment, and that I'll figure out how to keep enjoying life, even if I've got a few new side effects added to my card.
When I get into one of these moods, which isn't often, I remember the scene from the movie Monty Python and The Holy Grail in which a villager attempts to hand a sick neighbor over to the death cart master in order to claim money for the find. "I'm not dead yet," the sick person disputes, spurring an argument as to how dead he really is, the sick person continuing to vehemently insist that he is not dead. Every time someone treats me as if I am one foot in the grave, or if I begin to believe that about myself, the cry "I'm not dead yet" rings through my mind. Because I am not dead yet. I need to believe that. Because whether I live 5 more months or 20 more years, I don't want to live it expecting to die. That's no fun, and, frankly downright depressing. And certainly, I want to make sure I feel alive enough to at least buy myself new underwear.