Imagine hiking in the mountains alone and there’s an accident no one anticipated. A random dead tree falls and hits you, sending you down a brushy slope. You are very badly injured, bloodied and there’s no one around to help you. There is no cell reception, and there is no simple way to contact the outside world. Maybe a few well-intentioned folks come by, but they are not really equipped to help you either.
Do you bleed out and wait to die? Do you ask the strangers who encountered you to risk making your situation even worse by dragging you and your broken bones to safer ground?
That is essentially my story. That’s because I have brain cancer and I live in the Appalachian region of Eastern
Tennessee. Cancer will more than likely kill me in the next few years, and I am largely without any quality medical care nearby to deal with many of the long-term deficits that come with it.
In case you think my analogy is an over-exaggerated hyperbole, know that the closest brain tumor center is at least a three-hour drive away in Nashville (Vanderbilt University). There are local general cancer docs in the greater Knoxville area where I live, but brain cancer, like many other serious diseases, is a very unique and complex beast.
Despite talk of “standard of care,” there isn’t enough information out there and there aren’t enough patients to help a generalist gain enough experience to truly be of help to cancer endurers such as myself.
Initially, I had a local general oncologist for a time. When things got weird with some test results– as they often do with brain stuff– I was told to get my affairs in order and anticipate dying within the next year.
So, there I was left bleeding along the proverbial side of the trail with a well-intentioned stranger apologizing that they could not really help me.
That was nearly three years ago.
What changed? I was fortunate enough to have the resources to travel six hours to a hospital in North Carolina that specializes in brain tumors (Duke University). Once you add in gas, hotel, and other travel expenses, a typical trip costs around $1000, and that expense is not covered by even the best of medical insurance. Every time.
One of the few blessings of the pandemic is that regulations on insurance companies have allowed local oncologists to partner with my out-of-state team, making it easier for me and many other patients in rural areas to work with more appropriate centers far away.
Still, those restrictions on insurance companies expire this month, so back to expensive out-of-pocket trips I go.
As Covid numbers spiral yet again, what about those who are unable to afford those trips? You’ll find them bleeding out on the side of the proverbial trail. In fact, many – especially in places like Appalachia – have put off getting those nagging little health oddities checked out, and those symptoms could be an early sign of something very serious.
Even before the pandemic, it took me five years of visiting random doctors and chasing down random symptoms that didn’t add up with the many diagnostic guesses I received (pinched nerve, allergies, stress, age, and even “exhaustion”).
Eventually, I was diagnosed and had two brain surgeries in Atlanta, even after I had pretty much given up on the medical care available in the area. Many folks are not able or motivated enough to chase down a situation like I was– or at least be as much of a hypochondriac.
I’m not looking for any help for myself. I’m very fortunate and grateful to be able to navigate this storm due to the assistance and generosity of those around me.
What I would like to see happen is for people to reach out to their elected national officials and request they push through some form of the Telehealth Modernization Act so it is easier for people who live in areas like Appalachia to work with medical professionals not far down the trail from where they are suffering.
I lobbied Congress last May with the National Brain Tumor Society, and it was received very positively. Yet, no actual legislation has passed yet due to other priorities. That is understandable, but I do not think anyone who is still reading this would like to see this very bipartisan issue forgotten. If you need any further motivation, here is a photo of me with my two young children (ages 5 and 7).
