A waltz is art not science. It is a gift.

A waltz is a dance or song done in 3/4 musical time which requires letting go of how we typically live our day-to-day lives.

Our digital world – which is all zeros and ones – is a march in 2/2 time.  How we live our busy lives is mostly in 4/4 time – one-two-three-four-one-two-three-four – repeat it all day from when you wake up until you go to bed.

But a waltz is different.  It requires a leap of faith after each one-two-three. If dancing it, each one-two-three begins on a different foot.  If playing a musical instrument, you cannot put the music into a box, it must flow freely.

As a man with two left feet who struggles with the electric slide at weddings – somehow finding myself face-to-face with people – a waltz is one of those things to behold with amazement and appreciation.

A waltz is not limited to music. There are people who are waltzes.  They handle every one-two-three with a leap of faith and maintain a flow into the next one-two-three. For the last 22 months, Missy waltzed with her cancer.  With every setback of this terrible disease, she would flow onto the other foot and keep moving forward gracefully, smiling and reaching out to others to dance with her. It all came naturally to her and every doctor, nurse, technician, medical office staff, support group person, cancer survivor, friend, family member, and every person she met since December 2017 was uplifted by Missy.  They were carried along on the next one-two-three in amazement and appreciation.  Their lives would never be the same because they had danced with Missy. Her gift of making everyone else feel they were the only and most important person in the world had left an indelible mark on their hearts.

Missy’s waltz with cancer ended Tuesday morning.  She passed away peacefully at home.  Until the very end, she continued to be charming, funny and lovely – uplifting everyone who came to visit her in the last few weeks.  One of the last things she said as her body was failing her was, “I just want to take care of everyone.”  She sure succeeded there.

This summer, with a few good months off of chemo, was a gift for everyone who spent time with Missy.  She had a more mellow, thoughtful, appreciative approach to every minute of every day.  Never any anger.  Never any frustration.  She opened herself up to strangers who she could see had struggles worse than hers.  She had the uncanny ability to key in on what was troubling someone and let them know that they, too, would be OK.

Missy had made peace with her situation.  A month or so ago, we met with Alan, an assistant pastor at our church.  She asked if she was praying wrong.  He told her there is no wrong way to pray.  It can be a simple conversation with God. She asked him what she could do moving forward.  What could she do to continue to help others.  Alan thought about it and said, “Maybe you can be someone that has God’s light shine through them for others to see.”  Missy tilted her head and thought about it for a moment.  Then just said “OK.”

An hour later she asked me how was she supposed to do what Alan said to do.  I told her, “That’s easy.  You’ve been doing that your entire life.”  As we went through the next several weeks and she continued to waltz with everyone, I would notice how she could get a smile out of everyone she met, and I would remind her that she was shining God’s light for others to see.  I don’t know if reminding of her of that was for her benefit or mine. It all came so naturally to her that the smile on the other face or the burden she lifted off the other person’s shoulders was just a part of everything she did.  It was simply the next one-two-three.

Until we meet again, Sweetie. I promise I will take dance lessons, too.

Early last month, June 2019, there was a lot of news coverage of the 75^th anniversary of D-Day and the Allied troops landing in France.  The reports kept citing the courage of the brave troops who stormed the beaches in France.  It got me to thinking about courage and bravery.  To me, courage is a character trait and being brave is putting courage into action.  The men who got on the boats in England showed courage.  Those getting off the boats in France facing overwhelming firepower from German troops were brave.  Very brave.

It made me think about Missy’s courage and bravery (and fierce pants) as she has battled her cancer for 19 months now.

Her courage, her character trait, was in accepting the facts and moving forward to fight back.  From the very beginning, she showed courage by making sure that chemo was started before Christmas after her December 9 diagnosis – wasting no time in getting started.  Her bravery has been with her every day since. After the first chemo had her on the bathroom floor sick as a dog on Christmas day, and many days after that, she pressed on knowing how tough it would be.  She went through the surgery with optimism and hope as her innards got rerouted and half her pancreas was removed.  When the news that the cancer had spread and was stage four in June 2018, she did not hesitate for a minute to jump into a different chemo treatment and then stick with it for 10 straight months. Throughout this chemo, her oncologist kept telling her that the chemo was not a permanent solution and that at some point she would have to move on to an alternative treatment.  Even though this chemo has been very effective, the human body is so smart that it can adapt to even the nastiest, strongest chemo and render it less effective. The oncologist kept saying you need to be nimble meaning there is a balance between the chemo working and when you decide to move to the next treatment.  You need to be healthy enough to do it – and courageous enough.

So, Missy got into the clinical trial at Chapel Hill.

Before I continue, those of you who know Missy know that there are few (really no) challenges that Missy backs down from.  If you’ve seen her on skis or a bicycle, you know what I mean.  On our first ski trip together, we were going for one last run down the hill, and I knew she would be down at the bottom well before me. I actually got to the bottom first, because she decided to ski up into the trees hit a little gap that flipped her upside down with a ski caught in the trees.  The ski patrol had to help her out of the tree. The point of this is that not only is she fearless, she embraces every challenge with a certain flair that makes her, well, Missy.

So when she began the clinical trial, we found out that she was only the 11^th person in the world to have started this trial. Just 11 in 7.53 billion people.  I’ve always known Missy was a one-in-a-million person, but if my math is correct that makes her one in 684,545,455. Quite a bit more special.

The trial itself is fascinating science.  The drug is a protein-receptor-inhibitor targeting the genetics of her particular cancer.  It inhibits the ability to accept the protein that her cancer feeds on.  Cancer cannot grow without something to feed on.  So, at the basic level this drug is designed to starve the cancer from what it needs to grow.  Brand new science and not for those without courage and bravery.

Right now, it is late Sunday night, and we are in Cary, NC (at a very nice hotel, did I mention this is Missy), and we will go to Chapel Hill tomorrow to get the results of a CT scan taken today to see how effective this experimental drug has been for the last two months.  Missy is asleep right now, but it has been a tough few days as we have been anticipating the results which could mean any number of things.  Ideally, it shows that this drug is working, and we stay on the trial for the next phase.  If it doesn’t, we have to find another beach to storm.

Overall, Missy feels well, and the three months without chemo have brought the old Missy back.  The chemo is really nasty stuff.  It keeps the cancer at bay, but it is no way to live.  It took a good six weeks without chemo before Missy was really herself again, and it has been so wonderful for everyone to have her back.  Especially me.  She has fought so hard through ups and downs, and little things like walking the dog together at night or going out for ice cream are like we are doing it for the first time again.  Little joys are huge joys again, and little setbacks don’t even matter anymore.

As I’ve written before, this is a helluva way to grow closer together, but we have cherished the good, the bad and the ugly of this cancer voyage. I cannot even remember Missy with a full head of hair anymore – without looking at pictures – and it doesn’t matter. She is prettier than ever.

One of the most amazing things has been coming to Chapel Hill for the trial visits. The treatment in Charlotte has almost been “concierge medicine” by comparison to Chapel Hill.  This has nothing to do with quality of treatment but more the environment. The oncologist office and chemo/infusion center that Missy has gone to in Charlotte is relatively small, close to home, and very concise.  The Cancer Center at UNC is a massive operation.  While we have never had more than a dozen people in the waiting room in Charlotte, there are typically a hundred or more at UNC and that is just in the section where we go for the trial.

It is a hugely humbling experience and in a strange way very rewarding to be a part of.  At UNC you see people who come from all over the state and from EVERY walk of life.  Recently, I saw two brothers – probably in their 40s – who were huge.  They must have played football in college, and one was very sick with cancer, and the other was wiping goop from his eyes.  When he was done, the sick one just hugged his brother and they both had tears running down their cheeks.  I stopped to talk with an old couple who were working on a puzzle that Missy and I had brought to the waiting room.  They loved puzzles, had been coming to UNC for two years, and always liked when a new one was there.  We find ourselves holding elevator doors for people who are worse off than ourselves, and talking to all sorts of strangers – engaging as brethren in this club of survivors and caregivers.  Often, you don’t even have to say a word.  You look into the eyes of someone in the waiting room at UNC and get an acknowledgement back of “go get ‘em too.”

There is so much more about the last few months to talk about, but it’s time to get to bed and try to sleep tonight. We need to strap on those fierce pants and go get ‘em tomorrow morning.

In mid-June, on a Saturday night, I sat on the kitchen floor and begged God not to take Missy from me.  Four days before, we learned that her pancreatic cancer had spread to her liver.  After surgery in March, she was declared cancer-free, but the scan taken as she began follow-up chemo revealed that the cancer had spread into to her liver.  Metastasized. She was now Stage 4.  In an instant, all the pain and heartache she had been through for the last seven months meant nothing.  We were back at square one, only worse.

The same day we got the diagnosis, Missy had moved into her sister’s house in Charlotte because we are having our kitchen renovated, and she needed peace and quiet, along with a stove, fridge and dishwasher – which had been removed and sat unplugged on the porch or in the garage at our house.

So, on this Saturday night, I sat on the kitchen floor of a totally unfunctional kitchen with no cabinets on the walls, and begged God until I ran out of energy and ran out of tears.  We have so much more we need to do.  So much more to do with family, with friends and neighbors, and so much more we want to do FOR others.

The kitchen was remarkably quiet – no appliances running – and I had a “Cool Hand Luke” moment where I waited for an answer.  The answer came through the silence.  It was all on Missy and me, but if we worked hard enough, God would have our backs.  It brought back, or maybe came from, an expression that I have always trusted: work like it all depends on you and pray like it all depends on God. Regardless of where you stand on religion, this is true.  Sweat and motivation and confidence make things happen.

The next morning, I decided to go to church where I use to go to church 10 years ago.  I needed some place familiar to sort through all that had happened in the last week.  This church is out in Mint Hill, about a half hour from home, but it always felt like home. When I walked in, I saw my old golfing buddies standing in the corner telling lies like they have done every Sunday for many, many years.

I know, I know.  Telling lies in church.

But I believe that God grants dispensation to golfers and fishermen.  Dispensation is a catholic term for cutting you some slack, giving you a break.  It is most commonly used to give dispensation when St. Patrick’s Day falls on a Friday during Lent.  Catholics are not supposed to eat meat on Fridays in Lent, but dispensation allows you to have some corned beef and cabbage on St. Patrick’s Day when it falls on a Friday.

I think there is a soft spot in God’s heart for golfers and fishermen because these are people who will swing a stick for hours on end trying to find golf holes or fish they cannot see.  True believers if there ever were any.  So maybe God sees potential in these people.

The sermon was about having complete faith in things and living that way genuinely.  Not 85%, not 95%.  It has to be 100%.  It started out about how children can see through parents when they are not 100% committed, but it went to how we can see through ourselves too if we are not 100%.  If we are not the real McCoy.

Given the revelations the night before, this all made sense.  It’s all on Missy and me, but God will have our backs – if we give this 100%, if we don’t waver in our trust, confidence and commitment. If we are the real McCoy.

The expression “the Real McCoy” has a fascinating background. It relates to Elijah McCoy, an American-born African American who fled to Canada via the Underground Railroad prior to the Civil War.  He returned to the United States after the war. He was educated as an engineer and had invented many products that he had patented. One of his patented items was an oil-cup to catch oil that dripped from locomotives on American railroad lines.  His oil-cup was considered superior to other models and railroad engineers looking to avoid inferior copies would request it by name, inquiring if a locomotive was fitted with “the real McCoy” system.

So our marching orders were clear.  We needed to be the real McCoy. To have 100% trust and faith in what we were doing despite the recent bad news.  When things got tough, we needed to get tougher. We could not have slide-back days – at least not in our attitude and determination.

The thing I have learned about cancer is that the person with cancer will have slide-back days in their body.  It’s a nasty disease with a mind of its own.  Cancer simply defined is abnormal cell growth that accelerates and takes over things around it. Southerners know about kudzu, and cancer is like kudzu after a good rain.  Chemo is like Round-Up to kudzu, an equally nasty substance that destroys things. And the two do battle – which wears a body down.  If you think about the old cartoons, where there was good on one shoulder and evil on the other, each speaking into a person’s ear trying to persuade him or her, that is sort of like cancer and treatments of it.  Except the chemo is nearly as awful on the body as the cancer is.

Two weeks later, we went to Wilmington to spend a week at Missy’s mom’s house, go to the beach and get a break from all the chemo, doctors, house renovation and everything that we had been through since December. Missy was still struggling with eating and keeping weight on, and after chemo three weeks in a row, her body was fried.  She slept in the back of the car the whole way to Wilmington, and she could really do little more than sleep the entire week at her mom’s.  We had hoped for some time on the beach and chance to relax, and we never made it to the beach.  Joan, Missy’s mom, felt awful about this.  A week that was supposed to be fun and relaxing, was anything but.

The next week we finally got some good news. Chemo resumed and when the blood work came back, it showed that the tumor markers had dropped in half.  The next week they dropped again.  After terrible news, and then a terrible vacation – and being at a point where we were really struggling to be the real McCoy – the good news fueled our faith which was bending but not broken.  This, in turn, lead to Missy eating better, engaging more with people again and gaining strength in body, mind and confidence.

This pattern continued until last week.  If you have been reading this blog, you know Missy blacked out last Friday in the evening heat as we went out to watch the start of the “24 Hours of Booty” bicycle event to benefit programs to support people with cancer.  When we went to see the oncologist again yesterday, he was alarmed at what had happened last Friday, and while he and Missy and I believed the black out was from dehydration after the chemo last week, he ordered a brain MRI to make sure the cancer had not spread to Missy’s brain. He had recently seen where pancreatic cancer had spread to the brain in a couple of patients, and it was nagging him that this could be the same thing.

So … yesterday felt like a trip back to square one, only worse, again.  Really worse.  We were both terribly shaken by this unexpected turn because deep down we knew if it had spread to the brain, it was game over. I spent the night with Missy at her sister’s house and neither one of us slept well – nothing new for the last six months for both of us – but we reminded ourselves to stay strong in our faith in our doctor, our faith in each other, our faith in family and friends, and our faith in God.  We had to be the real McCoy last night and today.

I worked at home today because I did not want to be in the office when word came back on the MRI.  Good or bad.  I asked myself if this was a sign of losing faith in everything, but I realized that being scared and losing faith are two very different things. Especially with cancer. If you’re not scared, something is wrong with you. Being scared is actually a sign of faith because there is a place you are trying to get to and that path is just uncomfortable.

Late this morning, Missy and Beth came to our house after the MRI, and called up to me in the home office, and told me that the MRI came back clean. The cancer had not spread to the brain.  That it was dehydration.

Before Missy and Beth had gotten to the house, I had spent a little time this morning begging God again.  Please don’t take Missy from me.  There is so much more we need to do.  So much more to do with family, with friends and neighbors, and so much more we want to do for others.  This time he answered a little louder, a little more clearly. It’s all on you and Missy, but I will have your back … if you are the real McCoy.

If you are reading this blog, then you know Missy.  And as you have read through her posts over the last few months, you REALLY got to know Missy: her tenacity, her compassion and the fierceness of her britches.

She has always exhibited daring and unbridled enthusiasm in everything she does.  There is nothing mundane about the way she approaches even mundane tasks.  It’s a voyage that makes this day different from every other day – and that is really how life should be lived.

Finding out about her cancer in December – and several subsequent setbacks – has brought an even greater fierceness, an even greater determination, an even greater Missy.  It was just four months ago that the idea of cancer even entered the picture and just a little over three months since Missy was diagnosed with malignant pancreatic cancer. In some ways, it seems like just yesterday, and sometimes a WHOLE lot longer.  With the news of each setback, the next few days dragged on as we shifted or canceled plans, and learned to push the new reality to the top priority.

Talk about each day being different than the one before.

But in a strange way, every day was also so much richer than the previous one.  We learned a whole lot more about medicine and surgery, about love and priorities, about how just sitting quietly with someone can be the best prescription.

Several people have asked me what I thought about Missy’s blog, and to be honest, I had not even begun to read it until last week.  To me it was re-living bad news and tough chemo days, re-spending Christmas Day with Missy so sick from chemo that she just laid on the bathroom floor to feel better. To Cleveland sports fan, I felt it was like re-living “the Drive,” “the Fumble” and a couple of 11^th innings of Game 7’s that I’d rather forget about.  Our Buffalo friends can substitute “wide right” or “no goal”, and you get something totally etched in your memory that you will NEVER forget, that you painfully remember every second of.  But since I started reading the blog, it is my go-to inspirational tale.

Through this all, we have seen such an extraordinary capacity of giving and selflessness in so many people that have been on this journey with us.  The people at Levine Cancer Institute are the most amazing and committed people we have ever met.  Not all cancer tales are like Missy’s.  In fact, she is in a very small percentage of people with pancreatic cancer who are even eligible for the whipple surgery. The people at LCI come to work each day with their fierce pants and hopeful smiles.  And it makes a huge difference to be greeted with that optimism, compassion and professionalism.  It is the first step to owning your cancer not as victim but as a cancer-slayer.  The folks at LCI have answered a calling with grace and grit.

One thing about your wife having cancer is that you notice the word on the wall of hospitals and clinics.  In fact, it’s all you see. You know how when you buy a new car, you start seeing that model all over the place.  Same thing. Every wall of a medical center, every other commercial on TV, every article you read, it’s the first thing that strikes you.

The giving and selflessness of friends, family, neighbors, co-workers and even strangers really taught us about priorities and what we should really get stressed out about and what is just a small annoyance in the big picture.  From my caregiver side of things, the friends and neighbors saying let’s go to a basketball game or just go have a beer and chill out away from the cancer for a few hours has meant the world to me.  I know you can’t run and can’t hide from the cancer, but I have really treasured an hour or two away.  So many people have brought food, said prayers, just come by to say hi to Missy that it was overwhelming at times.  Too much goodness.  Well, that was how it felt at first, but since then the abundance of love and caring has multiplied into energy and fierceness, and it has contributed so much to Missy’s positive attitude going into surgery and her rapid discharge from the hospital after her surgery.

One group of people who have been so powerful to associate with have been other cancer patients and caregivers.  It’s a different camaraderie than friends and co-workers.  It’s not even like being players on the same team.  It’s more than that.  March 8^th’s caregiver/patient event was truly spiritual.  Mostly winners, but some who had suffered losses of spouses or have been battling cancer for years but kept the winning attitude.

March 8 was a tough day.  Everything was getting extra-real with pre-op testing, surgery school and updating our wills with the attorney.  Then we had the caregiver/cooking school.  That was a real game-changer, not just on that day, but for everything.  As we met all these new people having experienced cancer at all levels of severity and having gone through every imaginable level of treatment, something dawned on me.  These people find a quiet space in this hectic world and their even more unpredictable cancer world.  It’s a space where they control the only thing they can control. Their attitude.  They’ve been picked up by a huge wave and slammed against the rocks, and found a way to surf that wave the next time.  They’ve grabbed their spouses hand and jumped off a cliff without a chute and landed on their feet.  They found immortality – with their attitude.

I have started going back to church.  We had not gone to church a whole lot in the last few years, and I have never looked at going to church as a holier-than-thou thing or an evangelical thing, but as an hour of time to focus on what really matters in my life.  You don’t need a physical church to do this, but it does help you to strip out distractions, think about what matters, and hear some words to help keep you thinking that way after the hour is over.  When we first learned of the cancer, I told Missy I wanted to start going to church again, and she asked where did I want to go – knowing we didn’t see eye-to-eye on particular churches and their approach.  I told her, “I don’t care whose phone booth I use to call God.”  But it was time to make the call.

Church has been comforting and hopeful and reassuring, but in so many ways it led to the same place that the cancer caregiver/cooking school went.  It’s fuel for an attitude, for positive decisions and for winning every day on every playing field.

The only thing I WILL be preachy about is that exercise needs to be added to this mix.  There is nothing better for an attitude or commitment or hope than breaking a sweat, getting the heart rate up, and gaining a truly personal accomplishment.  Exercise impacts only you and only in positive ways.  Kind of a no-brainer.  As we have gone through this, everyone has said to me, be sure to take care of yourself, too.  That is easier said than done as you watch your wife suffer through chemo or you both hear about all the things that can go wrong with the surgery.  It seems very selfish to want to go run a couple miles.  Even though you know that you have to be at your best physically, mentally and spiritually to lend the right support, it seems selfish.  But that exercise pays you both back many fold.  A lesson to be learned when you’re not staring at cancer, too.

But enough about me.  This blog post is entitled “A Special Kind of Remarkable” because of what I have seen Missy gain from and give to other people throughout the last four months.  As the reality set in and Christmas plans in Louisville, attending the JDRF conference in San Francisco, going skiing in Utah, seeing our niece Grace in her first horse competition, and so many other events/plans take a back seat to the cancer, Missy kept plowing through these tough days and setbacks with a better and better attitude. And it wasn’t just her.  She put the people at LCI on her shoulders and helped carry them through their tough days.  She put smiles on our amazing doctors faces with attitude, humor and the occasional way-too-personal fact that made them blush.  Did you know that talking about pubic hair (or the lack thereof) can make a renowned oncologist speechless?

The daring and unbridled enthusiasm, and the never two days alike that I mentioned at the start of this post not only has helped Missy get through this so far, but also friends, co-workers, family, and certainly me.  Even on crappy days during chemo, there was always something unique, something to anticipate down the road that was different than the day before.  I could easily see people mope and drag others down from day-to-day going through this, but she won’t let that happen on her healthiest day or her worse cancer day.  It really is a special kind of remarkable which has always been what I have loved most about Missy.