The Battle for Life: The Brawl between Big Nasty and AJ Takes a New and Unexpected Twist.
The Healthcare Industrial Complex leaves AJ High and Dry at a most Critical Juncture
“Wherever the art of Medicine is loved, there is also a love of Humanity. ”
Preface: As I prepare to write this piece, I want to be clear about my motives with you, the reader. My intention is to tell my story so that others might learn from it and avoid the fix that I am in. Grandstanding and beating my chest about Stage IV Cancer (aka Big Nasty) is not something I am interested in at all. But, if I can change the course of one life for the better, that will be my reward and this piece will be worth the effort. Also, some of my comments below speak to the cold and inhuman treatment of the healthcare industrial complex. This is in no way a reflection of the thousands and thousands of caring healthcare providers. It’s just a reflection of a side of this system that they may never see or be aware of as patients with critical needs just disappear from their radar due to back room decision-making.
It’s been about ten months since my last post. I try to not obsess and let this brutal disease (cancer) define me. But stuff happens and you really have no choice but to talk about it and share a perspective from someone thick in the battle. And then you have to deal with things head-on in the smartest and best way you know how……and then just let nature take its course.
So, the ongoing battle with Big Nasty (BN) continues unabated. We have had two serious brawls in the last 26 months. I took Big Nasty down hard via TKO in our first match toward the middle of 2015. The second match was a serious TKO for Big Nasty in December of 2016. It wasn’t pretty. But my post-bout trainers propped me up and got me back in shape ready to fight again. So here I stand, 26 months into what is a constant daily battle against the odds.
BN and I are back in the ring for a third installment as BN continues to go after my skeletal structure and spinal column to try to take me down. BN has also found a way around chemotherapy, like a virus that develops an immunity to an anti-biotic. All low and sinister tactics that I need to take head-on.
“Nurses may not be angels, but they are the next best thing.”
My body and spirit are strong, and as I lace it up for another day of battle and I look to my trainers and medical support team at Cancer Treatment Center of America. They are uncharacteristically late today. I wait. And I wait. The last time we spoke, they had a new medication that was sure to give BN the TKO we need. I was ready to roll.
I put in a call to try to get a sense of when the training team would arrive. I get an answer. There is a coldness on the other end of the line. “I am sorry we can no longer be of help, please seek out other options. We are no longer here for you. Your health insurance is no longer good with us.” Click.
I look to the heavens and have a WTF moment. How is this possible? The same COBRA program I have been on for the last year and a half is still in place. It’s been very reliable as I have paid thousands of dollars in premiums and deductibles to keep it current. Why won’t they take it so I can get my treatment started immediately? I was at a loss. This is not an insurance problem but a Cancer Treatment Centers of America issue, plain and simple.
“In an emergency, what treatment is given by ear? Words of Comfort.”
— Abraham Verghese MD
Not having a training team in your corner with a foe like this is, well, let’s call it what it is, a death spiral. The long and short of it? Even though I have fully functional health care insurance I can’t get the life-saving treatment I need now because I need to start to transition off COBRA in April 2017.
So this is what our health care system has become. A disgrace. A Stage 4 cancer patient with disease that is on the move can’t get a provider like Cancer Treatment Centers of America to help in whatever transition that needs to take place. They basically toss me to the side of the road. Nothing to help bridge the gap, just cut and run. And when I call to plead my case, it’s like going into the sales manager’s office at a car dealership……the rep goes into the back room and talk to the manager and he gives the rep a big fat NO, we are done.
Who is to blame here? I am trying to figure that out. Obamacare is an easy target. Inept politicians on both sides of the aisle are, too. Then there is the healthcare industrial complex…..the business side of healthcare that has no compassion, no soul, no sense of what is right and wrong. No sense of humanity. Is this how the free market works when it comes to healthcare?!? What a crock!
As I look over to BN’s corner I see BN and his team with their smug grins on their face as they get ready to battle. They see I am now laid bare with no trainers at all. They are ready to go in for the kill. I dial Cancer Treatment Centers of America one last time pleading for help. They have gone quiet. I no longer exist except for a small unpaid balance due that is floating around.
I reach out to my other team of non-medical supporters and they are outraged. They have put good will on me and my ability to win this battle with BN. Seeing me standing there exposed like this with no real defense is shocking to them. The outpouring of support gives me hope and energy to fight on.
The referee calls BN and I to the middle of the ring as we get ready to start Round Ten of this latest brawl. We both have an eye that is swollen shut and contusions everywhere. The refs says we look good enough to get it on in round ten, even though we are both beaten-up pretty good.
I try to buy some time. I go back to my corner and make some calls. Where do I go for a new training team as I teeter on the edge of life? Good question. The bell rings for round ten. We are up and have each other on the ropes as we pound each one another.
I hear my phone ring back in my corner as round ten ends. Maybe, just maybe, I am on the trail of a new training team that can help me through this tumultuous time. Time will tell.
“It doesn’t take an instant more, or cost a penny more, to be empathetic than it does to be indifferent.” — Brian Cooper
Next steps? Pull out all stops this week for some resolution.
Or, as a health care broker of many years shared a few options:
- Get married to someone with healthcare.
- Get a job with group coverage and then quit. That will mean 18 months of COBRA.
- Take my independent contractor self and get wrapped-in with a large company.
- Get myIrish citizenship (I have been meaning to do this anyway) and get care in the homeland or EU.
- Join and company as an unpaid employee and pay for your healthcare in full.
In the meantime, the pounding continues as we go into round 11 of a scheduled 15 round bout. The fight never ends. Every moment, every second of every day.
Postscript: If this can happen to me, it can happen to you or your loved ones. If I can use my voice to make a sniff of a difference, it’s worth every word I write. Onward!