(The Last 5 Years)
I wasn’t exactly like the guy Thoreau referred to when he said most men live quiet lives of desperation, but I must admit there was a resemblance. Still, Nancy and I lived better than many. I had a decent job, no debt to speak of except for a house payment. Nancy had been able to be a stay at home mom with the boys. Luke a sophomore and Zach a senior in high school, were both doing exceptionally well in the International Baccalaureate program. Nancy and I loved each other and seldom fought. But I worked too much and had little energy left over for the family. Nancy was bored, the boys didn’t need her like before and she was ready to go back to work. Seems like life should have more to offer, and other things elusive I couldn’t put my finger on.
Then on Friday, January 13th 2012 Nancy was diagnosed with a brain tumor. Our neat little world was rocked. It was as if we suddenly found ourselves lost in a wilderness, not knowing which way to turn or what to do next. In our initial conversation with the neurosurgeon at our local hospital he said it could be one of 5 things. The least threatening was a benign tumor or perhaps an abscess. But he said it looked like Glioblastoma Multiforme (GBM) with all the tests so far pointing in that direction. They would not know for sure until they exposed the tumor during surgery and did a biopsy. In the past when found to be a GBM, our neurosurgeon explained, some doctors would close the patient up. Not much you could do but get your affairs in order. He told us this without prelude or preparation as if telling about a story he had read in the Sunday paper. However truthful, however honest he was being, there was nothing positive about his demeanor.
No way was I going to let this guy do brain surgery on my wife. But after such an emotional blow, how do you begin to search for a medical center and an exceptional physician to provide care for your partner, your sweetheart, the love of your life. The local neurosurgeon refused to refer us to another hospital or doctor. He said we would get the best medical care possible there, a hospital that saw not even a handful of GBM’s a year. I did not know where to start. The local doctor suggested driving to a hospital and taking our chances with whatever oncologist and neurosurgeon happened to be on call.
A clear path of action was not evident so I did the next best thing I knew to do. I could take one step even though I didn’t know what the one after that would be. So I began to counsel with friends. Just so happened my boss knew a guy who knew a guy who was a renowned neurosurgeon at MD Anderson in Orlando, Fl.
Two days later we had a consultation in Orlando and surgery was scheduled for the day after that. The morning of the surgery it dawned on me we needed a spiritual and emotional treatment plan as well as a medical plan.
As I sat in the room that morning as Nancy slept, I prayed and contemplated about how we should handle this. Five principles came to mind.
- Face the brutal facts but never lose hope.
- Know that God is in control.
- Count your blessings.
- Take one day at a time.
- Live every day to the fullest.
These 5 principle became our bedrock as we traveled the path God set before us. I did not know what the future had in store. I knew God could heal Nancy if it was his plan, but I also knew that whatever God had in store for us he is good all the time. Simply put, I trusted God to see our family through this regardless of the ultimate outcome.
We went from a dismal outlook for medical care to a place better than I dared hope for. Friends from Valdosta drove to Orlando to support us during the surgery. There are large waiting rooms for families with patients in surgery at what was MD Anderson Cancer Center then, the UF Health Cancer Center now. Our friends filled two of them with more spilling into the hallway.
We did not realize the depths of God’s love or our friend’s until that time. Nancy could not fathom how much I loved her until then. I did not understand the depths of my love for her until then. This is a letter I wrote to Nancy the following Christmas.
Now I Know
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 rooms. 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,
Nancy did not miss one important event in the boy’s lives including soccer games, graduation, and spring break at Vogel State Park in North Georgia. It took several months but besides a roaring in her left ear that dissipated over time, she recovered without deficit. After the surgery, the first thing she told her doctor is “don’t you dare give up on me!”
Those little things we did that used to get on each other’s nerves didn’t seem to matter anymore. I learned what loving unconditionally truly meant, and how to love exuberantly holding nothing back. Oh to love that way again! Things were not perfect, but they were very good.
If I could get just one thing across, it would be to love your spouse unconditionally, exuberantly, and to hold nothing back. Not because you might lose them soon, but because it’s just the right thing to do. I found that the little thing that was missing we had all along. We just weren’t aware.
Nancy was accepted as a patient at Duke with chemo and radiation directed by a local oncologist in Valdosta. The doctors at Duke inspired hope. We left every visit pumped. We developed relationships with the staff and looked forward to future visits with our new friends.
We had 3 ½ wonderful years while Nancy’s tumor was in remission. We appreciated that time and lived more fully than we ever had before. Who would have thought that we would have some of the very best years, our best times after Nancy’s diagnosis? We certainly did not!
Still there were times we would get apprehensive, especially after a PET scan waiting on the results. I had to keep reminding myself during those times of our 5 Principles.
Then one day in late September of 2014, only a couple weeks after a clear PET scan, Nancy had what we would later find out was a localized seizure. The first one was mild, and we wrote it off as a side effect from the surgery and scar tissue. A week later she had another one more severe. We insisted on another PET scan and told the doctors at Duke. They asked us to come up right away.
During the drive up she had the most severe seizure to date. She couldn’t move her right arm, but even scarier, she couldn’t speak. I didn’t know if it was a seizure or if she was stroking out. She wouldn’t let me take her back to our local hospital to be evaluated.
The drive that day was as if we had died and gone to hell and our punishment was that excruciating, seemingly eternal journey to Raleigh, North Carolina wondering what the future held.
Long story short, Nancy was accepted into a cutting edge study using a modified version of the Polio virus to wake up her immune system so the cancer could be identified and eradicated by her own natural defenses. 60 Minutes, who was already following the study began to follow Nancy’s treatment. They came to Valdosta to get footage of us at home and there was always someone at our Dr. visits. We did 2 interviews with Scott Pelley which was a story within itself.
There were side effects associated with the treatment. As the immune system kicked in, swelling took place. That’s a huge problem with the brain encased by the skull with no place for the swelling to expand.
Nancy had a grand mal seizure at Thanksgiving. Her drugs were adjusted and augmented as time went along to keep the swelling and associated side effects in check. Her condition see-sawed as they adjusted drugs. This was a new technology and the doctors were learning.
She had a stroke in August. The doctor’s started her on a low dose of chemo to knock down her Tregs which regulate the cytotoxic T cells that identify and kill the cancer.
It seemed the low dose of chemo was exactly what was needed to control the growth of the tumor. By our visit to Duke just before Christmas of 2015 the tumor had shrunk significantly. It was as if someone had taken an eraser to the MRI the difference was so great between then and previous MRI’s.
There were high 5’s all around the examining room as Dr. Desjardins, Nancy’s oncologist, gave us the good news.
Unfortunately, Nancy wasn’t the only one with health issues. For a while I had experienced chest discomfort when I got my heart rate up. At first it didn’t happen every time I exercised, but as time went along it became more consistent. At Christmas break I set up an appointment with a cardiologist. I ended up having triple bypass surgery 2 days after Christmas. I celebrated the 2016 New Year with tubes running out of my chest as I struggled to walk to the end of the hall and back in the cardiac intensive care unit.
On one of those walks Nancy thought she twisted her ankle. We didn’t know it at the time, but it was the tumor starting to grow again. This time quicker and more ominously than ever before.
As I recuperated Nancy deteriorated. I was in constant contact with Dr. Desjardins. We had another appointment scheduled for early April. But Nancy’s condition took a hard turn toward the worse and we life flighted her back to Duke.
They wouldn’t let a family member fly with her and I ended up driving to Duke that night alone. When she arrived at Duke she was still lucid but could hardly find a word. She was able to thank the nurses from time to time, but that was about the extent of her verbal ability.
The second morning we were there she slipped into a coma. Dr. Alan Freidman, the surgeon who Ed Kennedy chose to do his surgery was scheduled to operate in an attempt to debulk Nancy’s tumor. But she was too far gone for surgery, she hung on for several days but passed on April 6th. I had been joined by my sisters, Diane Bader, Nancy’s sister, Clinton and Jeana Beeland, my best friends in Valdosta and Craig Reilly, my best friend from Orlando, and Tim Kuck visited, my boss and co-owner of Regal.
The 60 Minutes crew were with us until our final meeting with Dr. Freidman. Katie Brennan, an associate producer, Aron U., Shawn Rocco from the PR department at Duke, Dr. Desjardins, her nurse navigator Rosemary Kettering, and especially Denise Cetta, 60 Minutes Executive Producer, had become an extended part of the family and an important part of our support group. Denise spoke at Nancy’s service flying from her home in DC to Jacksonville and then driving to Valdosta. Scot Pelley sent a hand written sympathy card.
Nancy never sought to be the center of attention so it wasn’t obvious to the casual observer what internal strength she possessed. She never once felt sorry for herself and never asked why me, she took care of the boys and did things as if she had never been ill at all, and she never expressed fear. She was a woman of faith and trusted God. What a woman I had married! How blessed I am to have shared a life with her!
I could understand the outpouring of love and support for Nancy. It was a little harder to understand the support I received after Nancy’s passing. I had invitations to dinner 3 or 4 times a week and many, many calls to say hi and see how I was doing.
God had seen my family and me through a most difficult time. We had been surrounded by friends and sincerely been loved. I missed my wife but now she was free from pain and from what I’ve been told, read in the Bible, and believe; she wouldn’t come back now if she could. I would see her again and after Jesus telling me well done good and faithful servant, I wanted nothing more than for her to tell me that I did good after she was gone. Her passing marked an end to something I’ll cherish forever, but I knew it also marked the start of a new beginning. I want to honor Nancy by living with the same courage she exhibited at the end of her life. Little did I know the opportunity that awaited me.
Nancy had lived with such courage and set such a great example those last 4.5 years; I was prepared for such a diagnosis. Now it was my turn. I wanted to hear Nancy say you did well.
Friends saw me through 6 rounds of chemo and then 3 weeks of kidney stones. I never felt worse but don’t think I had ever had a better time in my life. I lost every hair on my body and my Telly Savalas look held no sex appeal. There were times I could hardly make it off the couch much less take the garbage can to the end of the drive way. But I had fun. Between chemo rounds I went out with friends, people came over, I spent a week at the beach. I was surprised to find the love that was displayed for Nancy pertained to me, too. The outlook was dismal but if a man had to go, surrounded by friends and with tons of support, it was a good way to do it.
At my last PET scan which came back clear, I joked with my doctor that at least 4 people survived 5 years after being diagnosed with stage IV NSCLC. He looked at me solemnly and said those are people with a certain protein upregulated and they had a drug for that. I didn’t have that protein upregulated. He said if I wanted to do something with my boys to do it now, don’t wait. I asked if I still qualified for Long Term Disability. He said I qualified, by all means take disability and spend time with loved ones while I still had a modicum of health. I talked it over with my boss, co-owner of Regal, and he encouraged me to do the same. I had worked for Regal a total of 30 yrs. and managed the plant in Valdosta 13 yrs. It was difficult walking away from a job I had poured my heart into for so long and away from the people I worked with, many of whom I had come to love.
So I took their advice and I’m spending time traveling with friends and family. My sons and I spent a week in the National Parks in Utah, Nevada, and Arizona. I was home for 5 days and then flew to Brazil for 10 days with friends and my oldest son Zach who had just graduated from Georgia Tech. Then I was off for a week to the Bahamas on Elbow Cay where the owners of Regal had provided a house and a 33’ luxury performance boat for me and friends. I have several more trips in the works.
When I was in college I dropped out one semester and lived along a deserted stretch of river, hunted and ran a trap line. At that time in my life I thought I would be content if I could live in the woods and never see another human being. But I’ve learned God created us for relationship. Love makes all the difference. And even though loving deeply opens you up for the possibility of a tremendous amount of hurt, it’s much better to love.
So I intend to spend whatever time I have left with friends, family, and traveling. Hopefully my epitaph will read he learned to live well and he died good.