Carcinoman’s Land

by Kip Cole

Mark met me outside as I got out of my car after parking it in front of his house.  He looked good – healthy and fit in spite of the cane he was leaning on and his slight pallor from months of being cooped up inside.  His hair was shaggy and long, wafting about his face in the warm spring breeze.  I shook his free hand and offered the standard greeting between friends who haven’t seen each other for a while, “Hey dude, how ya doing?”

Mark worked at WKNO in Memphis

“I’ve been better,” he said with a wry smile.

In his younger days, Mark had been an athlete, playing multiple sports.  Now in his early forties, age had slowed him down only slightly; he was still fit and active, enjoying the outdoors – hiking, swimming, sports, drinking beer, grilling – all the things the typical American male is supposed to enjoy.  After a career spent in broadcasting – starting out in radio, then moving on to television – Mark started out in Oklahoma, then on to Texas before landing a gig at the PBS station in Memphis.

Prior to taking the Memphis job, Mark hadn’t had health insurance for quite a while.  So, when he qualified for the station’s plan, he loaded up on whatever coverage was offered, even purchasing the supplemental Aflac plan, thinking that you can never be too prepared.

By the spring of 2011 Mark’s job was going great, he had made many friends both at work and all over the area.  He was dating someone very special.  Life was cruising along just about as idyllic as you could imagine until something very unusual happened.

In spite of having the constitution of a bull moose, he began to get sick.

Mark’s persistent back pain wasn’t all that surprising; he just figured that a lifetime of playing sports was finally catching up to him in his 40s.  However, the diarrhea he’d been experiencing for some time was more worrisome.  His girlfriend, Cher, insisted he get checked out.  Tests revealed a mass in his back, near his colon.  A biopsy delivered every person’s worst nightmare: cancer.  The other shoe soon dropped: his particular type of cancer was something called squamous cell carcinoma.  His doctor said it’s one of the most aggressive forms of cancer they know of.  In 90% of people, squamous cell is manifested as skin cancer.  While still deadly, it can be beaten if caught early.  Mark was one of the 10% in whom it shows up internally.  “Lucky me,” he deadpanned.

Mark had the constitution of a “bull moose”

He knew it was serious when his oncologist looked concerned.  “You don’t ever want to hear your doctor use the word ‘worried’ when it comes to your diagnosis,” Mark said.

Okay, fine he thought.  What do we need to do to beat this?  Surgery, of course, for starters.  Then enough radiation to light up the eastern seaboard.  And after a course of chemo and some recovery time, he was right as rain and back at work, imagining he was one of the lucky victims of cancer who could be labeled a “survivor.”

Mark’s cancer was diagnosed in June.  After his surgery and course of treatment was over, he continued with regular scans just to make sure the cancer hadn’t returned.  He and Cher had resumed their normal lives with Mark feeling lucky to have gotten a second chance.

A scan in October 2011 seemed to be clean.  But another scan, just a couple of weeks later presented some terrifying news: the cancer was back, and with a vengeance.  It had spread, invading his colorectal area and pelvic lymph nodes.  His fight was far from over.  After the holidays, at the beginning of the brand new year, Mark would undergo surgery to remove a large portion of his digestive system.  This would be intensely invasive, grueling surgery that would completely, irrevocably alter his lifestyle.

Faced with this looming ordeal and upheaval, Mark and Cher made an unusual decision.  They decided to get married.  So, shortly before Christmas, on December 17, without telling anyone, they tied the knot in a Nashville wedding chapel.  Mark says the decision to get hitched took very little thought; by now the fact that their futures would be forever intertwined was a given.  And with a long, hard fight ahead, with the very real possibility of the worst possible outcome… well, it just made sense to continue this journey as husband and wife.

Mark and Cher decide to marry

In January 2012 Mark went under the knife for an epic 10-hour surgery that utilized at least two surgeons, removing his entire rectal area, several feet of colon and most of his pelvic lymph nodes.  They removed so much mass from inside his body cavity that they then had to harvest muscle tissue from inside of both thighs to pack in there in order to prevent his internal organs from sagging down from their original placement.  For a while he had six drains emerging from his body to collect fluids flowing from his various incisions.  With his colorectal system no longer in existence, Mark’s bowel was rerouted to an opening in his abdomen; a disposable colostomy bag was now a permanent addition, taped across the lower part of his stomach.

Recovery from this massive operation was long and difficult, bringing Mark to the realization that his career was effectively over; he would probably never be able to go back to work on a full time basis.  In one fell swoop, cancer had forever changed his entire life.  “Up until then, my life had been centered around my career,” he said.  “But cancer came and took that away, completely altering my lifestyle, my diet, my ability to go out and do the things I enjoy, my sex life… it changed everything.”

On May 17, approximately five months after his surgery (which was his third, at that point), Mark contacted me via Facebook, sending a rather intriguing message: “I have a possible project idea. Two elements are me and stage 4 cancer. I want to talk about angles mental, drugs, social media death n the online world. Stew it over and I will be n touch.”

It had been almost two years since I had seen Mark.  We worked together at the TV station in Memphis only about seven months or so before I left to start my own video production company.  In that short time, while we didn’t exactly become close friends, he did make an impression.  He struck me as being confident and highly competent in his job in the the programming department.  This was notable for a place that was known throughout the city for its managerial incompetence and the fact that inefficiency and ineptitude were consistently valued and rewarded over talent and hard work.  So Mark was a breath of fresh air and I’m sure we would have become fast friends had I not bid that workplace adieu.

After throwing himself a head shaving party

But even though we hadn’t seen each other since I left, I was aware of his ongoing battle with cancer through our friendship on Facebook.  While we didn’t converse very often, I would offer up the occasional positive post on his page (Kick some cancer ass, Mark!), using social media as it was meant to be used: commenting on the real lives of others while remaining at an emotionally safe, uninvolved distance.

I showed up at his home on a warm Sunday afternoon about a week after he had begun his next course of chemo – his second – following that massive surgery.  I came prepared to shoot video, if that’s what he wanted, but mainly just to listen to his story and find out exactly what he had in mind for this project.  My head was a jumble of mixed emotions.  I was honored to be asked to follow and document Mark’s journey.  I was also terrified of doing justice to the man’s story… of failing to treat it with proper respect, or even worse, falling into some sort of maudlin, pandering treatment that belied the kind of person he was.  Mark had a sense of humor with an edge sharp enough to slice ham.  He wouldn’t appreciate being tiptoed around and treated with preciousness.

That first day I spent about five hours with Mark and didn’t shoot a frame of video.  We just talked.  About cancer and his story, sure, but we also shot the shit about everything under the sun, discovering that we had a great deal in common, at least career-wise.  He had been virtually housebound for almost six months with almost no one to talk to other than his wife and her grown kids.  He had been hungering for somebody to commiserate with who was as big an entertainment and television industry geek as he was and I seemed to fit the bill.

The thing that struck me about Mark was his grace and humor in the face of this ordeal.  The universe had handed him a big ol’ shit sandwich and he still had the ability to crack jokes about it.  Sitting in a room full of grim-faced chemo patients, Mark chirpily inquired: “So, what brings you guys here?”  Or in reference to the cheap hospital gowns everyone was forced to wear: “We all ready for choir practice?”  He may very well have been falling apart on the inside, but the brave, funny face he wore for those around him was nothing short of amazing.

Mark wasn’t sure what would become of the video that we would shoot in the coming months.  It might turn into a documentary or it might merely be a series of internet clips, a source of comfort and guidance to others who are facing a similar situation.  “We have a story that we don’t know the ending to,” Mark said.  “Hopefully it ends with me beating cancer and leading a long, healthy life.”  But he wasn’t kidding himself on what his odds were.  “Or it might just as easily end up being my epitaph.”

By that time in late spring, Mark had lost his job at the TV station.  He didn’t blame them; there was only so much time you could take off before it became unrealistic to keep a person on the payroll.  He still had insurance at that time; COBRA had kicked in and they were just able to make the monthly premium payments.  But things were beginning to become tight financially and they knew it would only get worse.  Cher was getting ready to leave her job – for a variety of reasons – but primarily to be free to take care of Mark.  His care, especially since his current course of chemo would take several weeks, was becoming a full time job.

Cher and Mark

Mark introduced me to a phrase I hadn’t heard before.  Chemo brain.  Apparently one of the side effects of chemo, in addition to making the patient violently ill, is a mental “fogging,” causing short term memory lapses and “slow” reactions.  During the course of the day Mark would forget important details such as whether or not he had eaten or which, if any, medications he had taken.  He soon realized that there is no way in hell a person could safely go through something like this alone.  You could easily kill yourself by over medicating if you didn’t have a someone close by to keep you in check.  Mark loved his wife, Cher, but this ongoing nightmare was driving home just how important she was to his life and well being – not just as an emotional touchstone, but someone who could help him stay healthy while undergoing this fight.  “I don’t know if I’d even be alive right now if it weren’t for her,” he said.

If Mark was a soldier in the trenches of this fight against an insidious enemy, Cher was a Field Marshal, directing the troops; keeping Mark healthy while dealing with doctors and hospitals, making appointments and scheduling meds.  Oh, and one other job in the middle of the constant swirl of activity that goes with being a caregiver: jousting with insurance companies.  Even though Mark had good insurance, even though he had purchased extra insurance, supposed protection against such an unfathomable blow like cancer, every day was still a constant battle for coverage, with Blue Cross constantly denying this claim or that, or refusing to pay for scans… one time even halting chemo in the middle of a treatment because some clerical error had resulted in Mark’s coverage being temporarily suspended.  So not only was Mark fighting for his life, but was also fighting for coverage from a policy for which he had already paid!

Few people outside the insurance industry would argue that these corporations aren’t inherently evil, preying on the sick and dying, yet are absolutely necessary in getting adequate healthcare in this country.  Mark and Cher were discovering firsthand just how these faceless corporations do their best to wear patients down, both physically and emotionally, hoping that they will eventually just give up and die before having to shell out more money.  One Blue Cross representative thought COBRA was a different insurance company and told Cher she should contact someone from there.  Let me reiterate: a Blue Cross employee, someone who supposedly knows and understands the industry for which they work, DID NOT EVEN KNOW WHAT THE HELL COBRA IS!  That right there pretty much sums up the utter contempt the industry has for their clients.

Chemo and the “chemo brain” after effects

When I first came along on Mark’s journey, he was weakened from everything he’d been through, but still able to get out and about some.  We spent a very enjoyable day driving around scouting shoot locations and talking.  Our first shoot was an interview with Mark shot beside a lake at a local park.  It was a beautiful, warm, late spring day and getting out in the sun seemed to do him good, although he was visibly worn out by the end.  But after the chemo started to build up in his body, it began to take its toll and he was less able to leave the house, growing progressively weaker and sicker.  His full head of hair finally began to thin, clogging the drain with handfuls after every shower so Mark threw himself a head shaving party.

Then, halfway through his course of chemo, Mark discovered something troubling.  A growth had appeared in his groin area.  About the size of your pinky, it lay along one of his incisions that ran down his inner thigh.  The doctor decided to suspend treatment while they figured out what this thing was.  A biopsy confirmed the worst: another tumor, nonexistent a few weeks earlier, but which had apparently started growing while he was undergoing chemotherapy.  Not a good sign.

Chemo was canceled; surgery – his fourth in the last year – to remove the tumor was scheduled for the end of August.  This latest tumor was a setback, no doubt, but Mark returned home still resolved to fight – and beat – cancer.  Not until the doctors had hung that dreaded label of “terminal” (and perhaps not even then) would Mark and Cher concede the battle was over.

But the fight seemed to be getting grimmer, with blows raining down from all sides.  It was taking forever to heal from this latest surgery.  Radiation had softened his body tissue and chemo weakened his immune system to the extent that made healing very slow and difficult.  Swelling and severe pain in his right leg suggested a blood clot for which doctors prescribed blood thinners.  Monthly COBRA insurance payments had become too expensive to make and after missing a month or two, they were unceremoniously informed by Mark’s former employer (via email no less) that his insurance coverage had been terminated.  By this point Mark was on disability, which barely helped cover living expenses, but without any insurance coverage at all, the prospects of getting treatment would dwindle.

It was at this point we decided that fund raising events and crowd funding would be the best bet to try to help Mark get the treatment he deserved.  This man, who had proudly carried himself and his family throughout his adult life; who, through a bad roll of the cosmic dice and a shitty safety network system was now reduced to depending on the kindness and generosity of friends and strangers to continue to work to save his own life.

Always facing the fight with humor

We started an Indiegogo campaign.  Our goal was to raise $20,000, a mere drop in the bucket when it comes to paying for treatment or covering debts they’ve already racked up.  Even with insurance they were looking at a quarter million dollars in medical expenses.  But $20k is a start.  At this writing we are still far from reaching our goal, with less than thirty days left, but his friends will continue to work to keep those contributions coming.

Mark’s leg pain was getting worse, becoming unbearable.  Whatever pain meds they had him on were barely scratching the surface.  In addition, he had developed what doctors believed to be a bladder infection which was causing him to pass bloody clots through his urine.  The pain and the bladder problem got so bad Cher had to call an ambulance to take him to the hospital.  Being the consummate video professional, Mark insisted his stepdaughter record, on her phone, him being put into the ambulance before he would allow it to drive away.

After almost two weeks in the hospital, working to get his pain under control and clearing the bladder of blood clots, Mark and Cher finally convinced his doctors of the need for body scans since his problems seemed to be more than a mere blood clot in the leg and bladder infection.  And something else was going on: an external growth in his groin area, along his upper inner thigh had appeared in the same general vicinity as his previous tumor.  For some odd reason the doctors seemed baffled over this growth, marveling at its size and unwilling to state definitively what they thought it was.

But Mark and Cher knew exactly what it was: like a horror film monster that refused to die, the tumor had returned.  It was the Jason Vorhees or Michael Myers of tumors.  The scans and biopsy confirmed their worst fears and more: the cancer had metastasized into multiple small nodes in his lungs; there was a tumor that lay next to the bladder (probably the cause of his urination problems); the tumor that lay along his inner thigh, like an iceberg, was just the external part of a larger one that spread through his pelvic region.  The growth rate at which this stuff was spreading was incredible.  The docs said the growth of the tumor in his leg could be measured by days instead of weeks.

And finally, after almost a year and a half fighting for his life against cancer’s black bastard cells came the final verdict: not much else could be done; chemo didn’t seem to be a viable option, surgery would do little good and he had maxed out on radiation.  Mark turned 44 years old on October 26 and now the doctors were telling him he wouldn’t see 45.  In fact, they said he’d be lucky to last six months.

Don’t count me out, yet

In spite of the fact that the surgeon deemed surgery to not be much of an option, Mark insisted they go in and remove at least some of the leg tumor in hopes of alleviating some of his pain and discomfort.  They did and it seemed to help, although he’s still got some severe pain going on.  Mark entered the hospital on Sunday, November 11, 2012 – Veteran’s Day.  Today, December 5 – day 24 of his stay – they finally sent Mark home.  We got some great video of him giving a thumbs up as they loaded him into an ambulance for the long drive home.

Since being given the latest round of bad news, Mark has busied himself by planning his memorial service, deciding on the how (cremation) and the where (scattered into the Mississippi river) as well as choosing a list of songs to be played at his service.  While some may look at this as being grim or morbid, it is his way of finally taking control of something in his life.  For a year and a half Mark has been at the mercy of others: cancer has been the principle architect of his life; doctors, nurses, courses of treatment, surgeons, insurance companies… they have all had a say in the course of the life of Mark Koonce.  Now he can finally grab a hold of something and call it his, even if it is his own funeral.

But even so, this doesn’t mean he’s giving up.  Mark is a man of faith as is most of his family.  He will continue to pray and hope that it is God’s will that he be spared.  After all, miracles have been known to happen.  And he will severely alter his eating habits, hoping that a cleansing diet of liquified fresh fruits and vegetable will help provide the healing that man-made pharmaceuticals could not.  “Faith and food” will be his regimen he says.   Mark’s hope is to at least make it to Valentine’s Day, so he can have one more holiday with his wife.

And even if all of the money we raise won’t, ultimately, go for Mark’s care in the event of a worst case scenario, it is still needed to help his family get out of debt.  Unless you number yourself among the nation’s wealthiest, it does not pay to get sick in America.

When I began this journey with Mark – a journey we had hoped would last much longer than it appears it will – we were friendly, if not exactly close friends.  But I am now proud to call myself his friend, proud and honored to be tasked with preserving and presenting his story to the world.  And watching him go through this painful journey, suffering setback after setback with incredible grace and humor, I can only hope to display a fraction of that kind of bravery if I myself am ever forced to look into the leering, insidious face of cancer.

I sat in his hospital room the other day discussing the song list for his memorial.  He wants meaningful songs that have some relevance to his life or to Memphis: How Great Thou Art by Elvis; Amazing Grace by Al Green; Keep Me in Your Heart by Warren Zevon.  I suggested Please Don’t Bury Me by John Prine.

During a lull in our conversation, Mark looked at me from his hospital bed, an unreadable expression on his face.  “Well Kip, it looks like we know how the story ends.”

Perhaps.  But it’s sure as hell not the ending any of us were hoping for.