Nothing prepares you for the word: Cancer. We use lots of metaphors to capture the moment it’s said – slap in the face; knife in the heart; a ton of bricks. Even so, words fail. They fail because it’s not just the physical leviathan in front of you or even the potential for hastened death. They fail because of the emotional, spiritual, professional, familial and existential bombardment that comes with such profound life-course alterations.
When I was a child, my family took a lot of short road trips. We often drove through the beautiful mountainous scenery of northwest Arkansas. Dotting the landscape were a series of square yellow signs with this caution, “Watch for Falling Rock.”
I never actually saw one fall, but the roadside was littered with evidence of small boulders having done so.
I always wondered how one is supposed to study the shifting jagged hillsides and keep the old Chevy Vega on your side of the twisty double yellow lines. Moreover, I wondered what exactly you were supposed to do when the great menhir of doom comes toppling down toward you. Come to a sudden in-the-nick-of-time screeching halt? Maybe, if all the fates align. Veer sharply, hoping to neither strike a tree, another car or careen down the mountainside yourself? Again, the perils of gravity, inertia, and circumstances all take a hand. There is of course, option three: You just run right squarely into the damn thing and let the proverbial chips fall.
Maybe that’s the cancer metaphor: No matter how vigilant you are, stuff you can’t control just happens. If you have enough advance notice, you might be able to take meaningful action. If you aren’t aware until it’s too late, you just face the consequences.
Whatever your fiat of timing, there you are with the rock. You and everyone and everything that came before it just stand there, regarding the rock. In that moment, I suspect everyone has the same first question: Now what?
I’ve never had cancer, but my maternal grandfather developed prostate cancer. His was cured and he lived another two decades. My two dogs, Paddy and Loti both died of brain tumors. These two instances felt sudden, cruel and horrible. There have been several friends whose journeys have ended in ways both better and worse.
Then there’s my dad. I wrote recently about the Community Band in which my dad, Mike Pate, plays. A couple of years ago, my dad went to his general practitioner for what he thought was a urinary tract infection. It wasn’t. There were small masses on a kidney and in his bladder.
In the matter of fact, yet genuinely optimistic way my dad appears to deal with most travails, he began a recommended course of treatment. It wasn’t especially effective, but there was a silver lining. Thanks to the skilled nurse practitioner in his GP’s office, the cancers had been discovered very early.
What unfolded was a more than two-year odyssey of cross-country trips, surgeries, consultations, tests and research. I mention research because that’s how I chose to deal with it. I still have four of the largest three ring binders I could buy, crammed with all the medical research on cancers of the urinary tract I could find. Mind you, when I say “research,” I’m not talking about articles from Newsweek. I’m talking about medical journals chocked full of statistics, charts and terms obscure to all, save medical professionals. I felt like I was cramming for the biggest test of my life – a test that was going to be administered in a language that I did not speak. I guess when something is that important, you just figure it out.
I felt like I was cramming for the biggest test of my life – a test that was going to be administered in a language that I did not speak.
I have a doctor friend who says she wouldn’t have me as a patient because I ask too many questions. She and I have fought about this a lot. Without doubting the expertise of medical professionals, I feel duty-bound to know everything possible about the situation. If for no other reason than to make informed decisions about care. I might feel differently if the six different doctors I encountered during my dad’s treatment had all agreed on the best course of treatment. They didn’t. Not by a long shot. There was barely any consensus.
Doctors are human. They have different levels of education, training, skill, knowledge, experience… How can you even begin to know if you’re being given the best advice?
I’m sure my questions irritated them. Let me be exceedingly blunt: I don’t give a S#!% about their egos or level of irritation. I do, however, care deeply about my dad; and if they didn’t have the inclination to answer a few questions, why should we trust them with my dad’s life?
To be clear, doctors do some pretty amazing things. They spend a long time learning and improving their craft. They are also well-compensated for it – as they should be. They are not, however, infallible. Nor will I treat them as though they are.
If they were infallible and imbued with complete knowledge, I’d have one smallish notebook of research because everybody would have reached agreement – not four ever-expanding ones. Medicine, like all living arts, evolves. I took it as my responsibility to identify the doctors whose practice appeared to corelate with that evolution.
Yes, I know. I’m not that kind of doctor. So, how could I possibly tell? The short answer is simple: I can’t. What I do know is this. When my dad’s first specialist repeatedly insisted on a course of treatment with an average success rate of eight percent, I took that as a strong indicator of his commitment to improvement. We went elsewhere. To quote one of the next doctors, “Oh we haven’t used that stuff in years.” Consensus.
The journey has continued for many months. Last week, there was a turning point. My dad’s current doctor, Rodney Davis, MD at the University of Arkansas for Medical Sciences did a follow up exam and a few tests. The results indicated no presence of cancer.
Frankly, I don’t quite know how to process the news. Of course, the situation isn’t absolutely concluded. There will likely be lifelong monitoring and maybe even additional treatments. So be it. For the moment, I think everyone feels a lot better.
As a point of preliminary summary, I have a few observations. First, passivity and blind acceptance of the first “expert” opinion will likely get you suboptimal results. You are responsible for understanding as much as you can about your own situation and options. Second, sometimes things just go wrong and there’s nothing you can do about it. Third, I hated every second of this experience. It really pissed me off that this kind, decent, honest, generous, creative, loving man had to endure all the pain and stress associated with this disease. Fourth – paradoxically – there was actually something pretty great that came out of it. Apart from successful treatment, my dad and I got to spend a lot of time together. We traveled. We ate some interesting meals. We even got to see a few sights along the way. Most of all, we got to talk. While I am extremely thankful for the positive medical outcomes, I am equally thankful for the time together. I’m sorry it took a situation like this for me to be more present. Lastly, Pop, thanks for hanging in there. Whatever is next. You won’t be alone.