The Horrible, Beautiful Journey

[An Unfinished Novel]

My wife lay in the bed semiconscious with wires and tubes running out of her body in all directions.  Her head was wrapped in a disheveled gauze bandage.  I held her hand.  She squeezed back weakly as she attempted a smile.  I could see it in her eyes more than the up-turn of her lips.  “I made it,” she seemed to say with satisfaction, “I told you I would.”

The odyssey began two weeks earlier when Nancy noticed subtle changes in her ability to read and write.  Then one morning as we discussed our oldest son’s high school graduation and upcoming departure for college, she uncharacteristically became more upset until it eventually developed into what I thought was a full blown panic attack.  Later that week as the problem worsened she read me a passage in a newspaper article and got the pronouns and simple verbs wrong.  She did better when reading fast than she did when she concentrated on each word.

“What’s wrong with me?” she asked.

“I’m sure it’s something simple,” I said, trying to sound confident and reassuring.

Our attempt to make an appointment with a neurologist we could see right away was unsuccessful.  We decided to go to a walk-in clinic.  If the attending physician thought it was serious enough, we reasoned, he would refer her to a neurologist who would then have to see her sooner.

The walk-in clinic doctor was hopeful that her condition was stress related but wanted her to get a CAT scan to be on the safe side.  After the scan, we waited in the radiology waiting room for the scan to be read.  We had been told it would take only 15 minutes or so.  After 45 minutes the receptionist said she didn’t know what the holdup was.  More waiting…

Finally I called the walk-in clinic to inform the doctor that we were leaving the hospital and asked if he could let us know when he heard something.

 

“Mr. Justice, I’m sorry someone didn’t get with you sooner; but I just got off the phone with the radiologist.  The scan shows a five-and-a-half centimeter mass.  Nothing is for certain at this time but you need to go directly to the emergency room at SGMC.”

I tried to pull as much information out of him as I could.  Nothing he said was reassuring.

I don’t remember how they knew, but David and Cindy Neck found me at the hospital that night.  There is a bond that forms between likeminded men who hunt and fish together.  David guided my youngest son to his first turkey and the oldest to his first whitetail deer. Our bond helped me get through that evening as we waited on Nancy to return to her hospital room from the plethora of tests they ran her through.

“It could be one of five things,” the neurosurgeon told us the next morning.  “But it looks like a glioblastoma multiforme (GBM).  Once we open a patient up and do a biopsy, if it’s a GBM, well… some doctors will just sew them back up.  Not much you can do but get your affairs in order…”

Does he realize what he just said, I thought?  Did he really just share that news with no kind of prelude or warning?

Almost without a pause he continued, “I’ll do the operation day after tomorrow.  We may not be a Shands or MD Anderson, but you won’t get better care than here, anywhere.”

I asked him as politely as I could, despite the way I was feeling, to refer us to another doctor. He said he couldn’t do that, our best bet was to go to an emergency room at the hospital of our choice and take our chances on whatever surgeon and oncologist was on call.  He said that when we made up our mind to let him know.  A few days or a week one way or the other wouldn’t make a difference.

I knew the CEO of this hospital and thought we might get somewhat preferential treatment.  But I wasn’t going to entrust her care to a surgeon who didn’t inspire hope or a hospital that handled such cases on an intermittent basis.

 

It is difficult enough to deal with the news of a serious illness; even more so to find your way through the maze of decisions that must be made when you’ve been dealt such a severe emotional blow.  I knew of no clear path to find an excellent surgeon who would accept Nancy as a patient.  How do you go about finding such a doctor on short notice?  Even though I felt totally clueless, I was determined not to let my wife down.

One step at a time, I thought.  Just do the next right thing.

I called my boss, Tim Kuck, to let him know I would be out for a while, for advice, and probably most importantly, for prayer.

Tim is co-owner of Regal Boats.  Regal was founded by his father, Paul Kuck, who handed the business over to Tim and his brother Duane before Paul passed in 2006.  Regal is family owned and operated on Christian principles.  I know I’m a better man for having the influence of Regal Boats and the Kuck family in my life for the last 27 years.

Tim had boated in the US Virgin Islands in one of our new 52’ yachts a customer invited him to use at Thanksgiving.  He had told me about running into the anesthesiologist who attended his son during one of many surgeries.  Jamal Hakim is a Muslim and Tim a Christian but they had hit it off.  At the time, I thought it strange that he would spend as much time sharing about meeting Jamal in a phone conversation about business as he did.

“Remember me telling you about docking next to Nathaniel’s anesthesiologist in the Virgin Islands?” Tim said after I had explained our predicament.  “Well, now he’s the head of Quality Transformation at MD Anderson in Orlando.  Let me see if he has any ideas.  Duane will get on the phone, too.  I’ll call you back in a few hours.”

When Tim called back, he said that Hakim’s close friend, Dr. Nizam Razack, would be happy to take on Nancy’s case.

I have two sons who are two years apart.  At the time one was a senior and the other a sophomore in high school.  We were huddled around Nancy in her hospital bed as I shared the news as gently but honestly as I could.  They seemed to take the news well but you never know with boys.  Zach had a million questions, Luke was very quiet and I wondered what was going through his mind.  We often have rigorous, sometimes laborious debate about politics, religion, and philosophy.  But with boys, you get very little comment about their emotional state.  Nancy especially was worried about them.

In the couple of days between diagnosis and when we were able to see Dr. Razack, Nancy’s condition deteriorated rapidly.  She had a terrible head ache and couldn’t tolerate light or noise.  Forget about reading and writing.

Some people have the “heart” to communicate with and care for patients and families facing this sort of trauma.  Dr. Razack’s administrator, Kim, is one such person.  It was her mission to take care of us and she made us feel that we were the center of her universe and Dr. Razack’s main focus.  We needed to feel that way, but knew she had at least tens of patients similar to us she provided for.

Dr. Razack had daytime television good looks and his calm, focused demeanor oozed caring and confidence.  Not only was he a brain surgeon, but he had also earned a law degree on the side.  Just the kind of guy you wanted if you had to have brain surgery.

Dr. Razack went over the scan with us and explained what the tumor was likely to affect and what could be affected due to the surgery.  The tumor was in her left anterior parietal lobe near the area that controls motor function on her right side and hearing.  The good news is that it was near enough to the surface that he thought he could remove 99% of it, if it was indeed a GBM.

GBM’s are not solid cysts with well-defined edges.  They are more like a dye that has been poured into jello while it’s still liquid but gels quickly before the dye can disperse. After the jello solidifies, there is no way to get all the dye out without taking a lot of the unaffected jello with it.

After surgery, to kill the cancer cells that are left, radiation and a drug called Temador have become the standard treatment.  While this will keep the cancer at bay, sometimes for a few years, the tumor for the vast majority comes back.

For Nancy, believe it or not, that was good news.  She chose to focus on being one of the miraculous few for whom the tumor did not recur – if it was indeed a GBM.  Why couldn’t she be one of them?  From that moment on that was her focus, regardless of the circumstances, to be one of the very few who make it.

And there was still the off chance that it could be something as simple as an abscess or a benign tumor.

The evening before surgery Clinton and Jeana Beeland from our hometown and our closest friends from Orlando, Craig and Chris Reilly, came to visit at the Caring House (which became my home base while Nancy was recovering at MD Anderson Cancer Center in Orlando.)  I had invited our priest, Carl Buffington, to join us from the Anglican Church we and the Reillys attended in Winter Springs before Nancy and I moved to Georgia.

It did Nancy and I good to have people we care about and love, and who care about and love us, who have never met, come together.  There was a sweet spirit about that evening that brings me comfort to this day.

On the morning of the surgery I awoke early.  I needed to digest the last few days.  Nancy had been diagnosed on January, Friday the 13th, 2012.  It was now Wednesday the 18th.  From the initial shock and bewilderment, we were now in the best possible position I could imagine for medical care.   We were surrounded by family and friends and had a ton of support from the Regal Organization.  The external battle plan was well laid out.  But how the family handled and understood this intellectually, emotionally, and spiritually was not as clear.  We needed to be as intentional about these things as about Nancy’s medical care.

Nancy and I are both born again Christians.  We know God can perform miracles.  We believe doctors do not have the final say regardless of statistics.  I also know that there have been people with faith far greater than ours who didn’t have their prayers answered the way they wanted. I know beyond a shadow of a doubt God loves us.  We are in His hands.  I do know what I want and I pray fervently for those things, but who am I to presume to change God’s plan or have a better one.  So simply put, on that morning I chose to trust God for our wellbeing.  I believed we could still come out ahead; not in spite of, but even because of this illness.

If it doesn’t kill you, it only makes you stronger.  I intended for our family to become stronger.

There are certain principles that hold true through the ages regardless of circumstances.  These are the principles that came to mind that morning as I sat pondering, that have anchored our family since:

  1. Face the brutal facts but never lose hope.
  2. Know that God is in control.
  3. Take one day at a time.
  4. Live every day to the fullest.
  5. Count your blessings.

 

Over the past three years the hard part has been remembering these things at each end of the emotional spectrum.  It’s funny how you get good at what you practice and that includes the way you think.  You can get real good at worrying or letting your mind dwell on the worst case scenario.  Never underestimate the power of habit.

When things were going really well, we tended to get complacent and not be present in the day.  When things got tough, if we weren’t careful worry would crowd our thinking.  It would have been easy to let worry or thinking about the worst case scenario become the defacto state of mind.  And even though we slipped from time to time, by being mindful of our principles, we were eventually able to pull ourselves out of the mire.

Nancy is quiet and never seeks to be the center of attention.   A casual observer would never guess she possessed such inner fortitude.  As I sat with her in preop, I sensed no fear.  For her, surgery was a necessary step in the recovery process.  With God’s help, she was determined to beat this disease and see both our boys graduate from high school and then from college, get married, and have grandchildren – in that order.

There are three large waiting rooms for families with loved ones in surgery at the MD Anderson Cancer Center in Orlando.  Our family and friends filled one of them and most of another.  Twenty or so friends from our home town in Georgia drove 3 hours to get there.  My family who had migrated to Orlando in the 80’s was there along with Nancy’s brothers and sisters who drove up from Naples, Florida and down from the Atlanta, Georgia area.  Nancy and I are not social butterflies.  I never would have thought so many people would have come to support us.  I was overwhelmed.  We were loved, who would have thought. Us?  Go figure…  In truth, I think it said a lot more about our friends than it did about us.

There was only one person in the waiting room I did not know.  He was an older gentleman, there alone, waiting on his wife to come out of surgery.  I introduced myself and we talked awhile.  I asked if he would mind if we all prayed for him and his wife.  He was very appreciative and I made sure he had plenty of company until his wife came out of surgery and was taken to ICU.

After Nancy’s surgery, which took several hours, Zach, Luke, and I met Dr. Razack in a conference room adjoining the waiting rooms.  The surgery had gone extremely well and he explained in detail the procedure.  Unfortunately, the biopsy proved the tumor to be a grade IV glioblastoma multiforme.  He explained he was able to remove all visible signs of the tumor, but as I explained earlier, you can never remove all of this type of tumor.  Average survival is 15 months.  I was disappointed but expected the news.  If it looks like a duck, walks like a duck, and sounds like a duck, it’s probably a duck.

Luke our youngest hung his head and tried to hide the alligator tears rolling down his cheeks.  Luke is brilliant and very creative but you’d never know it because he keeps to himself, much like his mother.  Zach our intelligent high school senior has a personality much like mine and in a lot of areas you pretty much know whatever he’s thinking.  He quizzed the doctor thinking in the moment if they put their heads together they could come up with a cure.  Luke, the more pragmatic of the two, finally said, “Come on Zach, they’ve worked on this for years.”

Zach and Luke are about as close as two brothers can get.  Even though they are 2 years apart, they played on the same sports teams and have the same group of great friends.  There was no accusation in Luke’s comment.  He was simply stating a fact and Zach took no offense.

It wasn’t easy, but when I went back out into the waiting room to share the news with friends and family, I was somehow able to put a hopeful spin on it.  Funny thing is, I meant every word of it.  Funnier still, although there have been times I personally have struggled greatly (that’s putting it mildly), so far it’s played out pretty much the way I described.

__________________________

 

There was a hushed bustle in the intensive care unit.  Nancy’s pale skin was almost translucent.  Monitors beeped and I had to be careful not to get tangled in the mess of tubes and wires that ran from her body.  After that first feeble attempt to smile, she struggled to speak.  Her words the first few minutes were a jumbled mess but by the time the neuro-oncologist, Dr. Nick, arrived about an hour later, Nancy could speak in simple sentences.

Nancy held his gaze as she defiantly asked, “Am I going to die?”  The question took me aback.

“Most assuredly you are, dear.  Maybe not from this, but you will die,” he replied matter of fact.

Nancy glared at him.  “Don’t you give up on me.  With God’s help, I’m going to beat this.  Don’t you dare give up on me!”

Her initial question was not out of fear.  She wanted to make sure her medical team believed in her ability to survive this.

“Have you ever made the best grade in the class,” Dr. Nick asked.

“What do you mean made the best grade in the class?” Nancy replied.

“Made the highest grade in class.  Like in grade school, high school, or college.”

“Well, yes,” Nancy answered.

“There is a new study that indicates with the treatment that is available now, one in twenty make it five years or more.  If twenty was the average number in your class, you just need to make the best grade.”

The odds weren’t great but at the moment making the best grade in class was a better way of thinking about it than surviving an average of 15 months.   Bottom line is Dr. Nick infused hope.  He became one of our favorite doctors.

Nancy tried hard to impress the doctors and nurses with her recovery.  I never heard her say, “don’t give up on me”, again out loud.  But her attitude and hard work made it easy for them to believe that she is indeed the one in twenty.  In fact, she’s one in a million.

Nancy’s hair fell out from the radiation, Dexamethasone taken to lessen brain swelling from the surgery at first and then from radiation made her gain 30 lbs., and the Temodar used to help keep the tumor at bay, taken for 5 days once a month made her feel like she had a bad case of flu for a few days.  She was left with a roaring in her ear that took months to lessen and never entirely dissipated.  While physically miserable at times, she was still emotionally fit.   She never missed even one event in the boys’ lives – not one soccer game, teacher conference, or graduation event.  We even went to the north Georgia Mountains at spring break with the Beeland family and took a bunch of kids with us.  And Nancy hiked some of the more physically demanding trails around Vogel State Park.  She said nothing but her actions shouted out, “I will beat this!”

We did not choose this path, but through it we learned much and learned it deeper than we ever would have otherwise.

Following are letters the boys and I gave Nancy at Christmas the first year after the diagnosis.

 

Now I Know

 

Nancy,

What a year; so much horror, pain and love.  It was a nightmare in a lot of ways but in others it was the best year of our lives.  Like a very good practical joke it could have gone way wrong.  But it didn’t.  Isn’t it strange how through God’s grace in such circumstances we find out how richly blessed we are?

Who knew we had such amazing family and friends?  During your surgery there wasn’t just a small knot of people in one corner of the waiting room praying.  They filled the room and spilled into the hallway and over into the adjacent waiting room.  The people who drove hours to visit you in the hospital, all the phone calls, the meals, the house cleanings, and the precious prayers all contributed to your healing.  It made the ordeal bearable and meaningful.  I know God was smiling as He watched His love displayed through them.  We both know we’re nothing special but we are loved by many.  Us…who would have thought?

I knew you were strong but I didn’t know how strong.  You go out of your way not to seek attention so your inner strength is not obvious to the casual observer.  But through this, did you ever show us all what quiet power you possess!  Even though you couldn’t spell house forward much less backward, it was obvious the minute you awoke from surgery you were determined to beat this.  You made it clear to the doctors and nurses if it could be done, with God’s help you would do it.  And with God’s grace you have.  You could have wallowed in self-pity but you haven’t.  Fearlessly you took on radiation and now every 28 days the dreaded but potent Temador.  Thank God for doctors and chemo.  Even though the chemo knocks you out for a few days, you’ve made it to every important event in the boys’ lives.  You are s-t-r-o-n-g.  That’s obvious, forward and backward.

I never knew just how much I love you although I knew I loved you much.  It’s hard to fathom the width and breadth of a thing until you’re forced to imagine life without it.  It thrills me when you tell our friends this has taught you how much I love you.  And I love you still, and I love you more, and I always will.

The love, our home, the boys, our family – by anyone’s standards we’ve done a pretty good job.  We are a great team.  Till now I didn’t appreciate how great. 

It seems outlandish we may never have known the gold mine we were sitting on if not for the adversity of the past year.  But it’s true.  I never want to experience something like this again but I am thankful for what it’s taught us.  That’s not so crazy, is it?  Truly, God’s grace is sufficient.

I love you,

Greg

 

                         ______________________________

 

 

Dear Mom,

            To say the least, this last year has been a bit difficult. However, considering everything on top of your diagnosis (Dad’s job, me moving to Tech, Luke’s junior year) we really couldn’t have hoped for better. Thank God for the Kuck’s helping find Dr. Razack and now for the doctors at Duke!  With God’s help and friends we got along pretty good.  And I think that says quite a bit for us as a family. While I cannot say exactly how your illness has affected me, or any of us for certain, I can say we will be stronger for it.

            Thank you for being here for us. Thank you for still being a great mother and loving us and doing all the things you always have even when you were struggling through your recovery.  Despite surgery, radiation, and chemo, you’ve been the best mom a kid could ask for.

So I would like to say: I love you. I hope I can be as good a son to you as you’ve been a mother to me.

Your son,

Zach

                       __________________________________

 

Dear Mother,

            When the docs first brought Zach, Dad and me into the ICU room after your surgery, it seemed to me they were very pessimistic about the outcome.  I was afraid I only had a limited amount of time left with you.   But then, even though you had just awakened from surgery, I saw how willing and determined you were to fight this and it gave me hope.  Every day after that I became more certain that you would get through this.  Right now I have no doubt in my mind that the brain tumor has been defeated.

            For this past year I have been amazed at how you’ve kept on trucking and how you’ve made beating this thing look so easy.  All through your recovery you have always been there to do the simple things like making my lunch, or doing the laundry, and even coming to our soccer games.  It astonishes me that so soon you have been able to go out and help others.  I thank God that He has given you the ability to fight this while continuing to be a great mom.   Everything you do amazes me.

Love you,

Luke  

                                     __________________________

 

I continued to read and learn about GBM’s and the research that is currently being conducted to treat them.  There are several university hospitals doing research.  Duke University had the most cutting edge trials being conducted and was relatively close.  Plus we had friends with friends who were being treated at Duke.  We were delighted when we got a call from Dr. Henry Freidman at Duke once they received the request for referral from our local oncologist.

“What’s your story”, Dr. Freidman asked Nancy.

She told him how the local Neurosurgeon broke the news and how he gave her no hope whatsoever.

“Typical,” was his reply.  “You’re in.  I’ll have our people get in contact with you.”  And just like that Nancy became a patient at the Preston Robert Tisch Brain Tumor Center at Duke.

The Tisch Brain Tumor Center at Duke is like a little slice of heaven.  Two words typify this place:  excellence and hope.  Every interaction with them has exceeded our expectations.

We had three great years.  We would become apprehensive when time for an MRI arrived and then celebrate when it came back clean.  We enjoyed our trips to Duke every other month.  The staff there infused hope.  Emotions are contagious and we always left there with uplifted spirits.  I was beginning to believe we had finished our struggle with the tumor.

____________________

 

In August of 2014 Nancy’s MRI showed no enhancement just like all the ones before it.  However, two weeks later she felt a strange sensation in her right hand and had trouble finding words for a few moments.  She mentioned it to me as an aside.  Effects from the scar tissue we thought.

When it happened again a week later, only this time more intense and after her not being able to find words for ten minutes, we became concerned enough to visit her local oncologist and request another MRI.  The doctor wasn’t in but the nurse was able to reach him by phone.  He said it was scar tissue, not to worry.

Nancy didn’t buy it, and insisted on another MRI.  It took a lot of wrangling and it was very frustrating dealing through his nurse with him on the phone but he eventually put in the order.

We called Duke to let them know what was going on.  The nurse on the phone immediately said it sounded like a seizure and after consulting with Nancy’s doctor there, asked her to be at Duke on Tuesday.  This was on a Friday.

On Monday morning we were on the road less than an hour heading for Duke when Nancy received a call from our local oncologist’s nurse.  The MRI showed the enhancement left by the scar tissue had doubled in size.  This meant the tumor had begun to grow again – very aggressively.  So much for the recent symptoms being from scar tissue.

Neither Nancy nor I spoke.  We could not find the words to express what we were feeling.  It was going to be a long ride to Durham and a fitful night in the hotel room.

Within minutes of the news, as if on cue, Nancy began to have trouble with her speech.  She grasped her right hand and looked at me with searching eyes.  It’s happening again she was trying to say but couldn’t find the words.

I pulled off the interstate and did a quick assessment.  She couldn’t speak, her right hand was curling but both pupils looked the same and her face was symmetric.  She had good color.  Should I call 911 and wait on an ambulance?  Was she stroking out or would this go away after a few minutes like before?  I relied on my gut instinct which told me it was from seizure activity and would soon dissipate.    I pulled back on the interstate headed south toward our home town.

“Relax,” I told her.  “This will go away in a few minutes.  The worst part is the anxiety.  Try to relax.” Easier said than done I thought.  “In a few hours it won’t seem nearly as scary. We’ll get you checked out at the hospital and then head for Duke.”

She pounded me on the shoulder and shook her head.  She did not trust our local physicians after wrestling with them to prescribe the last MRI.  It seemed even the nurses at Duke knew more than our local doctors.

I pulled off at a rest stop.  We sat on a park bench while she recovered.  There were years in the thirty minutes from the time of her first symptoms until she could communicate in full sentences.

Likewise with the rest of our drive; it felt as if we had died and gone to hell with our punishment being an eternal journey to Durham, North Carolina.  That night as we finally lay in our hotel room bed fighting to try and sleep, I willed myself back from the scenarios that incessantly crept into my thoughts.  “Don’t go there,” I told myself time and again.  “Wait to see what Dr. Rindazo has to say.  Deal in facts, not in conjecture and fear.

  1. Face the brutal facts but never lose hope.
  2. Know that God is in control.
  3. Take one day at a time.
  4. Live every day to the fullest.
  5. Count your blessings.”

 

Easier said than done…

_______________________

 

The Tisch Brain Tumor Center is well thought out.  There is an inexpensive valet service at the entrance.  Upon entering the building you see a concierge (okay, really an information desk) and to the right is a long fire place with gas flames that are always lit.  I’m sure there is symbolism the designers had in mind but to me the flames had come to represent the eternal determination the doctors and researchers have to beat this dreaded disease.  When caught in the light the quartz in the granite walls sparkle.  There is a stair well that is 3 stories deep with a grand piano at the bottom that is often played by visiting musicians.  In my mind, I imagine they are professionals and it is a great honor for them to perform here, although it is done without aplomb and hardly any of the patients they play for has the ear to appreciate the performance for what it truly is – except that it lends ambience and soothes the soul.  And so it serves its purpose and gives great satisfaction to the pianist, the patient, and the doctors and nurses.

Waiting characterizes most doctor offices.  Not here, everything is done with a minimum of hassle and with quiet expedience.  About the time you settle into the article from the magazine you’ve picked up your name is called.

In no time at all we had registered, had blood work, and were setting in one of the examining rooms on the 3rd floor.  Chevelle Bullock [or was it Mihn, Nancy says Mihn, I remember Chevelle] a research nurse clinician, came in wearing a smile and seemed very happy to see us.  Up to this point we had been…maybe devastated is the best word to use.  After the obligatory preliminary neural assessment where Nancy is asked to close her eyes and turn her palms up and hold them there along with other motor skill tests, to spell words backwards, and questions about her prescriptions and dosages to insure her chart was up to date, Chevelle crossed her arms and looked at Nancy with anticipation as if she had great news.

“We have options,” she said.

I had read enough to know that up to this point “options” meant treatments that might give a person a few more months.  By the time the GBM cells which had been dormant begin to divide again, they’ve mutated enough to become especially aggressive.  After all, these were cells that were tough enough to make it through radiation and Temodar.  Without aggressive treatment which could include surgery to debulk the tumor and more Temodar with the addition of Avastin, a patient with a recurrent GBM might make it 6 months.  With these drugs, you get a few more months and a better quality of life.  There are numerous clinical trials in process but none except for one, as far as I could tell, that might be an honest to goodness cure – and that one was still in phase 1.  I had mentioned it to Nancy but didn’t make a big deal about it in case it wasn’t an option for her.

Chevelle began to explain the options.  More Temodar – been there done that, Nancy said.  Avastin – we can do that to alleviate symptoms and slow the tumor growth but it’s not a cure, I thought.  Debulk the tumor – potential loss of brain function and recovery time – a last ditch effort at best.

Finally Chevelle said, “We have a phase 2 clinical trial using the Polio virus genetically combined with a cold virus (known as the PVS-RIPO trial) that Nancy may qualify for.”

“That’s it, that’s the one,” Nancy said pointing to the paper Chevelle was now holding.  “It was written up in People, right?”

“That’s the one,” Chevelle said.

This was the only treatment I was aware of that might heal Nancy.  Stephanie Lipscombe, a young college student, had been the first person treated in the trial and has been in complete remission with no deficits for three years.  She would be graduating college in the spring.

Hope.  Four little letters that make all the difference for people in desperate circumstances.  When the tumor recurred it was as if our ship had sunk and we were left floundering alone in the ocean.  What a relief to find a life raft to climb onto.  However, we weren’t on dry land yet and little did we know the storms we would soon encounter.

Face the brutal facts but never lose hope I reminded myself when Chevelle left the room.  I would need to remind our family (and myself) of our principles often in the days ahead.

_________________________

 

Nancy qualified for the trial in every respect, but if the tumor continued to grow aggressively would she still qualify a month later?

The PVS-RIPO trial is available for patients with recurrent glioblastoma tumors at least 1 cm away from the ventricles, surgically accessible and between 1 cm and 5.5 cm in size. Nancy’s last clean MRI was at the end of August.  She began to exhibit symptoms 2 weeks later.  At the time of our appointment the first week of October the tumor was 2.56 cm.  Aggressive GBM’s can double in size every couple of weeks.  The next open slot for Nancy to begin the trial was over a month away.

So instead of worrying whether the PVS-RIPO trial would be successful, I worried whether she would qualify for the trial a month later.  First thing first, I guess, even when worrying.

Worry is when you contemplate on something you don’t want to happen.  It’s supposed to move you to do something about it.  But what do you do when you can’t possibly do anything.  Pray…. and pray I did.

Almost as an aside, after Chevelle had brought the paper work in and explained what being in a phase 2 trial meant and all the dangers it entailed, she asked us if we would also consider taking part in a story 60 Minutes was doing on the trial.  My first thought was it would be a pleasant aside in an otherwise frightening situation.

The drive home was infinitely better than the nightmare drive up.  Nothing physically in Nancy’s brain had changed except now we had a little four letter word that made all the difference.  H-o-p-e.

Taking one day at a time (rule #3) and living every day to the fullest (rule #4) is impossible when your mind dwells on impending loss and fear. Who wouldn’t live their lives differently if they knew when and how they were going to die?  But would you live it to the fullest or cower in fear as the day approached?

In the beginning our 5 principles was my bedrock, but as time went along I realized I needed a deeper understanding to cope successfully.  I could not give Nancy the support she needed just by sucking it up.  It is impossible to fool anyone over time.  If I didn’t think she could beat this she would eventually intuitively know.

While doing research for leadership training for my team at the plant, I ran across two fascinating structures in the brain that helped me understand why, as hard as I try, I still struggled emotionally.

 

One is the Reticular Activating System (RAS).  The RAS controls the transition from sleep to wakefulness, certain sexual functions, and is the gate keeper to what we pay attention to.  The RAS is the reason we can single out our name when someone calls it out in a crowded, noisy room.  It’s what makes us jump without thinking when we see a snake or some other imminent danger.  It’s what draws our attention to a comment someone makes that confirms a deep seated insecurity.  Indeed, it brings to our attention the things that confirm what we believe.  It works at the subconscious level and frees up our brains to work on important things that require concentration.

The RAS explains one of the reasons change is so difficult.  If we think we’re fat and lazy, it brings to our attention all the things that confirm it.  If we think we’re going to die… well it brings to our attention every little tidbit of doom and gloom.

The second structure I found fascinating is the basal ganglia. Most of us go about our daily routine unaware how much of it is controlled by habit.  What we do without thinking; like the order in which we dress, brushing our teeth, or even driving is controlled by habit. Researchers have found that once we perform a task repeatedly, it is stored in a primal part of the brain, the basal ganglia, which is about the size of a golf ball and resides beneath the forebrain and near the brain stem. The basal ganglia switches on the habit and provides a pleasant reward of neurotransmitters once the task is done.  The more a task is performed the stronger the neural connections to perform that task are strengthened and the easier it becomes to perform the task.  Our brain begins to crave the feeling of satisfaction we receive from the neural transmitters once the task is completed. This is why it is so hard to break a habit.

With much of our brain seemingly running on autopilot, how do you not dwell on the negative?  The conclusion I came to was simple yet powerful (for me at least), and that is to be mindful of my thoughts and be present in the moment.  Once I became cognizant of my desired outlook (our 5 principles) the goal was to consciously cultivate thoughts in that direction.  My theory is that once the neural pathways were strengthened and habit took over, the RAS would become my friend and begin bringing to my attention the positive (rule #5, count our blessings).

So instead of my mind’s eye catching on every little symptom and immediately interpreting it as a sign of impending doom, our outlook fundamentally changed and we began to see the setbacks as just a bump on the road to recovery.  That needed to be our focus: recovery.  The setbacks just a bump in the road.  We are all on a journey, some parts of the road rougher than others.  The best any of us can do is seize the day.  Carpe diem, baby, the doctors at Duke and the Polio trial gave us hope!  God is in control (rule #2) and we can face the brutal facts yet never lose hope (rule #1).

 

The call on my cell phone had a Beverly Hills address.  It was Michael Kaplan, an associate producer from 60 Minutes.  He wanted to know if 60 Minutes could get some footage of our family at home.  We had both boys come home for the weekend, Zach from Georgia Tech and Luke from the University of Georgia.  We set it up for the weekend of Luke’s fall break.

Michael and the crew which consisted of a camera and sound man arrived in the neighborhood early but didn’t come to our door until precisely at the appointed time.

I am much like my father who likes to cook, loves to hunt and fish, and lavishes food on all guests.  Originally from the Hollywood/LA area Michael now lived in New York and I wanted to treat him to a good ole, southern down home meal.  Nancy didn’t want a mess from me cooking so I settled on take out from the Smokin’ Pig.  Michael is a young man, late 20ish or 30 at the oldest with dark hair and boyish good looks.  He has a dry, self-deprecating sense of humor.  “I’m the producer but even the camera and the sound man tells me what to do,” he lamented.  But there was something in his body language and quiet confidence that made you feel that he would soon grow into a much larger role.  Indeed, we witnessed just that in the months to come.

I’m the general manager of a boat plant and am used to being in control.  And as all my friends will attest, I am a story teller to the nth degree.  There were parts of our story I thought worth telling and I wasn’t shy with Michael or the cameraman.

 

The 60 Minutes crew politely followed my “suggestions” until Nancy had finally had enough.  She pulled me aside.

“This is embarrassing!” she whispered tersely.  “They know what they’re doing!  Let them do their job.”  I honestly thought I was being helpful.  Insisting on reading the letters the boys and I had written to Nancy for Christmas with tears flowing down my cheeks was the last straw for her.  I couldn’t resist giving some direction but I backed way off after that.

Our neighborhood was built 1 house at a time.  Its winding streets are shaded by large pecan, towering pine, and spreading live oak trees draped in Spanish moss.  Business owners, doctors, lawyers, and CPA’s live here.  This red necked West Virginian thought he had arrived when I built our house here.  It is the idyllic southern neighborhood.  Roger, our cameraman, couldn’t resist getting shots of us walking through the neighborhood with the setting sun filtering through Spanish moss.

Nancy never seeks to be the center of attention.  I thought she might come off as being shy during her first on camera interview with Michael.  For me, she came across as upbeat, delightful, and honest.  She had nothing she wanted to prove or was needful of.  She gave the facts as she saw them coming from heartfelt, firm beliefs.  Her bedrock was that God was going to help her beat this through our team at Duke and prayers from our friends.  She was going to see both her boys graduate, get married, and have children – in that order.

I was and still am so proud of her!  I had some making up to do after my behavior but I’m a quick study and have a desire to grow.  Suck it up I told myself as Nancy, Zach, and Luke scolded me.  Secretly I thought perhaps I’d missed my calling.  I could produce this story I told myself but needed to cool it.  We were dealing with the very best in the industry.  I’d have to settle for telling the story and perhaps writing a book.  It wasn’t easy keeping my thoughts to myself as time went along.

During this time the burning question in my mind was if Nancy would still qualify for the trial after waiting for the FDA to give Duke the go ahead to infuse her with the modified Polio virus?  A GBM can double is size every 2 weeks.  If hers doubled in size, she would no longer qualify for the trial.  After every infusion the FDA insisted on a full evaluation of the patient before approval was given to move ahead with the next patient.  Nancy’s opportunity was 5 weeks distant.  I was on pins and needles but didn’t want Nancy to worry so I said nothing.  Principle #2, God is in control, oh ye of little faith, I told myself but worried just the same.

The 60 Minutes crew along with Shawn Rocco a photographer from Duke PR, and Sarah       from the Duke PR department were waiting on us in the reception area on the 3rd floor of the Robert Tisch Brain Tumor Center where the neuro oncologist’s offices are located.  Dr. Deana Rindazo had been Nancy’s doctor.  For the trial her care would be directed by Dr. Annick Desjardins.  In the next year-and-a-half we would all develop close ties.  We became part of an extended family.

Fiduciaries, emerald like pendants, were glued to Nancy’s head to be used as markers to direct the surgeon as he guided the catheter carefully into the middle of the tumor.  Nancy was given a functional MRI to map out her motor, speech, and hearing centers on the left side of her brain.  If the catheter pierced one of these areas the quality of Nancy’s life could be greatly diminished.

The 60 Minutes crew filmed the procedure as the radiologist asked questions and had Nancy perform simple tasks as they mapped her brain.  I imagined the radiologist and the 60 Minutes crew knew whether the tumor was less than 5.5 cm but they said nothing.  As a matter of fact, I thought they acted somewhat subdued considering their ebullience when we first met.  I didn’t have the courage to ask.  I was miserable until we met again with Dr. Desjardins.

“Everything looks great!” she announced when she entered the examining room with cameras rolling.  I let out a loud sigh of relief.

“Less than 5 cm?” I exclaimed.

“It barely grew at all”, Dr. D. said.

What a relief!  Nancy had not been tuned in to all the qualifiers for the trial.  She didn’t know what the big sigh of relief was all about.  I clued her in later after everyone had left and we were alone in her hospital room.

The 60 Minutes crew looked puzzled.  I explained that I thought for sure they were aware of the qualifications for the infusion.  By their lack of enthusiasm after the functional MRI scan I thought for sure Nancy didn’t qualify.  They had no idea.  After that I tried not to read too much into a person’s demeanor.  I needed just the facts.  Let the Doctor do the talking and even at that know that God is in control!

The next day Nancy was prepped for the catheter insertion from which the PVS-RIPO vaccine would be infused.  Only a small area on her scalp was shaved.  Enough hair was left to easily cover the shaved area.  The 60 Minutes crew set up in the operating room where Nancy’s skull would be drilled into and the catheter inserted.  I was not allowed in the operating room but stayed in the prep room with Nancy as they gave her the preop medicines.  She was upbeat as usual with no apparent fear as always.  And why should she be?  We had some of the very best doctors in the world.  God had provided good hands to take care of her.

Dr. Samson, who would be doing the catheter insertion, had pioneered the high tech 3D technique that would guide the catheter squarely in the middle of the tumor.  He is ridiculously good looking and could have just stepped of the set of General Hospital.  The women in the 60 Minutes crew were a little giddy around him and the men I imagine just a little jealous.  At least I was.

Nancy waved at me as they wheeled her off.  I didn’t know at the time one of the previous patients hemorrhaged during the procedure and suffered brain damage from which to this day he is fighting to recover.  Nancy’s procedure went without a hitch.  The 60 Minutes crew were wowed by the high tech tools and 3D projection used to guide the catheter all pioneered by our hero that morning, Dr. John Sampson.

Dr. D. did the neural assessment when Nancy awoke in her private ICU room.  No headaches, no deficits.  We were good.

I was beginning to get the lay of the land with the doctors and 60 Minutes crew.

Dr. Desjardins was now Nancy’s neuro-oncologist.  Always oozing enthusiasm, she was lucky if she broke 5 feet tall, and was always in what I deemed to be uncomfortable high heels.  In high school I had a Christian Lebanese girl friend who had quiet pretty sisters who reminded me of Dr. D.  I never mentioned the sisters to Dr. D. or anyone else for that matter.

Michael Radutzky, a thin, scholarly looking Jewish New Yorker was the 60 Minutes head honcho.  Not only is he a long time 60 Minutes producer but had become the executive producer of creative development for all of CBS News. Michael seemed to spend most of his time with the doctors.  Michael’s crew were the best in the business so they didn’t need direction to set things up.  All they needed was an overall plan.

Denise Cetta was Michael Radutzky’s executive co-producer.  Michael may have been the head honcho but it seemed it was Denise who made everything happen seamlessly.  Always dressed to the 9’s, she could almost be described as statuesque but not quite.  She flirted with being a real beauty. We didn’t know what to expect from Michael and Denise.  We were a bit fearful of a gotcha moment for the sake of a more exciting story.  However, we learned Denise had a job to do and was going to do it but always kept in mind Nancy’s modicum of sensibility, and my and the boys well-being.

In the months to come Denise would call to see how we were doing.  Partly for the story, partly just to see how we were coping.  Nancy’s part of the story is long done.  Denise became our friend and stays in touch to this day.