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Rare Always Finds Me

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By John Hayler – Patient

I was born in Red Oak, Iowa.   My parents moved us in 1975 to Asheboro, NC.  I was 10 years old.  I graduated from Asheboro High School in 1982.  I went to Belmont Abbey College and graduated in December of 1985.  Between 1985 and 1995, I lived in Indianapolis, Charlotte, Dallas, Jacksonville, FL, Charlotte again, Jacksonville again, and then Charlotte.  In August of 1995, I moved to Cullowhee, NC to finish my MBA at Western Carolina University.  In 1996, I moved to Asheville.  I have been in Asheville ever since.  I guess I got tired of moving.

I have always thought life was a mix of timing and luck.  There have been too many coincidences in my life that are hard to explain, otherwise.  I have always thought that I was in the right place, doing the right thing at the right time.  Some of these events are easy to see in the moment and some events need to be seen from a distance to gain that perspective.   This will be hard to for some understand, but I have come to believe my life is one of destiny and getting cancer is part of it.  I was meant to get this disease and I am predestined to beat it. After hearing my story, I think you’ll understand why.

I moved to Cullowhee, NC in August of 1995 to finish my MBA at Western Carolina University.  During the spring semester of 1996 I was in one of my finance professor’s offices.  Grace Allen and I were talking about how each of us ended up in Cullowhee.  I was an older, non-traditional student.  I explained my trip across the country and back since graduating from college in 1985.  At the end of the conversation, I emphasized that I had been born in Iowa.  She commented that she needed to put a letter in the mail to a county clerk’s office in Iowa in order to get a copy of her husband’s birth certificate.  As I remember the conversation, she said she needed it so they could apply for her husband’s passport.  She asked if I knew where Red Oak, Montgomery County Iowa was.  I told her I did and explained that Red Oak was my hometown.  We were both surprised.  I asked her why her husband had been in Red Oak.  Did his family farm?  She explained that her father-in-law worked at an Eveready Battery Plant there.  Coincidentally, Eveready Battery was where my father worked.   I told Grace.  I left her office and went back to my campus apartment to call my dad.   As I remember the conversation, I asked my father if he had heard of Bill May at Eveready Battery.  Dad said he hadn’t heard that name in 30 or so years but yes, he had.  He went on to tell the story that Bill May had interviewed him at the University Of South Dakota and Bill had offered my father his first job out of college.  I have had subsequent conversations with my dad about those events and went on to find out that my dad initially turned down that job offer because it meant moving to Asheboro, NC. He went on to accept a different position with a different company in Beloit, WI.  After about a year, he wrote back to Bill and asked if the there were any positions available anywhere in the company.  Bill told him yes, and that position was in Red Oak, IA.  My dad accepted the position and worked for Union Carbide for over 20 years.  Mr. May, the father-in-law of Grace Allen, my finance professor at Western Carolina University, hired my father at Union Carbide in Red Oak, IA in 1963.

On September 2nd of 2016 at 1:30 pm, I walked into Asheville Hematology.  My CBC from my annual physical showed a couple of abnormalities in my white blood counts.  My doctor thought that I should see a specialist.   After another CBC, an exam and CT scan that Friday afternoon, the specialist thought I might have a type of leukemia.   It would be confirmed that following Tuesday with results from my CT scan.  By then my hemoglobin had dropped to a level that was going to require the first of two blood transfusions.  The long and short of it was, I had cancer.

In June of 1998 I started working for a company named Frischkorn Incorporated.  Frischkorn was a small respected regional industrial distributor.  In September of 1999 I was in Morrisville, NC training on a new computer system in preparation of Y2K.  Employees came to the Morrisville branch in small groups of five or six.  Linda MacIlroy was our HR Manager at the time and headed up the training project.  I hadn’t met most of these colleagues before, but it was fun to get together to place a face with a name.  We went to dinner as a group our first night in Morrisville.  During a lively discussion of college football, I confessed that I was a Nebraska Cornhusker and Iowa Hawkeye fan from way back.  Unbeknownst to me, Linda chimed into the discussion to tell me that she had been a Cornhusker Cheerleader back in the early 70’s.  I had told her I had been to several games.  Assuming I had grown up in NC, she asked how I had gone to these games.  I told her that I had grown up in Iowa and that a friend of mine’s father had season tickets.  I asked her how she ended up at Nebraska.  She told me that she had grown up in a little town in Iowa called Red Oak.  If you remember from earlier, I was born and raised in Red Oak, Iowa, too.   Red Oak was such a small town. I asked where she lived.  She told me, “in the 1100 block of Circle Drive”.  I lived in the 1100 Block of Eastern Ave.  We figured out that we basically shared a back yard growing up.  Her friends were the older brothers and sisters of my friends.  We lived there at the same time.  I delivered her mother’s newspaper.  I was terrified of her dog.  I knew then that I was at the right place, doing the right thing, and at the right time.  It was too coincidental to think otherwise.

I was transfused on Wednesday, September 7th.  I went back to the doctor’s office on September 8th for more blood draws and more tests.   I was being tested every Tuesday and Thursday.   On Thursday the 15th I was told the flow cytometry test indicated Chronic Lymphocytic Leukemia with a 17p deletion.  This was the worst possible outcome, because this mutation was very hard to treat and was also one of the leukemia variations most resistant to a complete remission. I think it was September 20th during my bi- weekly blood draws, the doctor gave me a note with the word “ibrutinib” written on it.  She asked me to Google it for more information. She explained that a specialist at Duke recommended this as the way we were going to attack this disease.    I did as she instructed and found out this drug was not without possible side effects including kidney failure, stroke, heart attack and death.  To add salt to this wound, the drug costs $11,000 a month and needs to be taken until you become resistant.  I was scared.  On the 22nd, I had surgery to remove a lymph node from underneath my right arm.  The pathology report just confirmed what the flow cytometry test already told us.  I had cancer and possibly the worst kind.

My daughter, Maddy, was 10 years old in 2013.  I told her if she got straight A’s I would take her to Pixar in California.  Well she got straight A’s, so we started planning our trip.  Seems that Pixar doesn’t have studio tours, but we were headed to California anyway.  We decided to go to the San Francisco Bay area for a few days, and then take the train to LA to see Disneyland and Warner Brothers studio.  We saw the 49ers play at Candlestick Park on August 8th. On August 9th we went to the Giants/Orioles game at ATT Park.  In the second inning JJ Hardy of the Orioles hit a home run.  By a lucky coincidence, Maddy got the home run baseball.  The ball was a perfect souvenir.

In May of the next year, 2014, we took a trip to Baltimore and New York.  While we were in Baltimore, we took the ball to the Orioles/Indians game.  JJ Hardy was gracious enough to autograph the home run ball we got in San Francisco. While we were at the game, Maddy was able to corral a foul ball.  We were two for two with baseball souvenirs.

In June of the following year, Maddy, my father and I went to Chicago in June for my birthday.  We went to Wrigley Field for a Cubs game.  We sat down the Cubs 3rd base line near their bullpen.  During the 7th inning, the Cubs pitching coach, Chris Bosio, tossed Maddy another ball.  Maddy was now three for three in the souvenir department.

A week later, on June 16th, I was in Boston on business.  The company I was seeing was going to take us to the Red Sox/Braves game at Fenway Park.   Maddy asked me to get her a ball at the game.  I told her I would try, but not to get her hopes up.  Our group got to the game early, so I went down to the field for the Braves batting practice.   A center fielder for the Braves, who I will refer to as “Mac” to protect his and his family’s privacy, had just finished up his turn at the plate. He was walking towards the Braves dugout.  I yelled to him that I was from Asheville and was a T.C. Roberson Rams fan.  Mac was from Asheville and T.C. Roberson was his High School.   Before I knew it, he slid his bat across the roof of the dugout to me.  I was stunned, but Maddy and I were now four for four in the baseball souvenir department.

In August of 2014 we went to Seattle. We saw the Mariners play the Orioles.  We got Manny Machado’s autograph on the ball we got from Baltimore.  In the ninth inning, Maddy got another foul ball.  We were now five for five.

I spent the next 6 months trying to track Mac down in Asheville in order to get him to autograph the bat for my daughter.  In February, I was telling my story to my friend, Dale, at the YMCA.  Dale said he knew Mac’s father.  He told me to bring the bat to the Y and let him have it.  He would get it signed.  Two weeks later Dale called me saying he had the bat.  It was signed: “To Maddy, Best Wishes,” and included his full name.

I grew up playing baseball, little league, pony league and some in high school.  Baseball was a neat hobby, but I can honestly say, going to games wasn’t something I sought out as a pastime.  However, going to games was something Maddy and I could do when we traveled to other areas of the country.  We were on a roll.  When we travel, a highlight of our trips includes an MLB baseball game.

In July of 2016, in the middle of planning our trip to the Midwest, to my hometown of Red Oak, Iowa and then to Kansas City, I went to have my annual physical.  It was an annual ritual that started eight years earlier when I found out my father has prostate cancer.  I was poked, prodded and stuck.   A week later my doctor called to tell me my hemoglobin was a little low.  This had happened before while giving blood at the Red Cross and a couple of other times during annual checkups.  He told me to start an iron supplement and check in with him after my trip.

We flew into Omaha on August 10th, 2016.  We hung around Red Oak for a day then drove to Kansas City.  We had tickets to see the Royals play the White Sox on the 11th.  We had good seats in the front row, right down from the Royals dugout.  In the second inning, a foul ball was hit over our heads.  I had my glove, reached for it and missed it.  Oh, well.  Fortunately, in the 7th inning another foul ball was hit down the first base line.  The ball boy grabbed it and gave it to Maddy.  We didn’t come home empty handed.  We were now six for six.

We spent the next day going to the Kansas City Comicon.  This was an unexpected highlight of the trip for the anime-obsessed Maddy.  We happened on to it by chance while looking for something to kill time before the Chiefs/Seahawks game.  The rest of the trip went as planned.  We drove to Northern Iowa to see what was left of my grandparent’s farm.  We visited with my aunts, Joann and Pat.  I saw my cousin Karen.  This was family that I hadn’t seen in 35 years.   We drove out to Rapid City in order to visit Mount Rushmore and Deadwood.  It was a tiring trip that culminated in meeting childhood friends, Laura Nelson and her family, in Des Moines for the Iowa State Fair.  We finally ended up in Omaha for a couple of days prior to flying back to North Carolina and reality.  We flew back on Saturday the 17th.

I always like having a buffer day when I come back from vacation.  It helps me gear up for the work grind ahead.  I’m in sales and as much as you try to leave work behind when you go on vacation there are always situations that can’t resolve themselves until you return.

Halfway through the week I called my doctor to schedule a follow-up lab visit.  I went in and had all the routine tests done. I fully expected to get the all-clear sign from the tests.  But on August 30th my doctor called and asked to see me.  It was urgent; he needed to see me that day.  I met with him later that afternoon.  He reassured me that there were several benign reasons for my test results.  The bottom line was that my hemoglobin was below 9.0 g/dL.  He needed to schedule an appointment for me with a specialist.  I still wasn’t worried.  I felt fine.

This brings me back to September 2nd, 2016. The CT Scan, the blood tests, the transfusions.  Doctors don’t tell you that you have a disease that can kill you.  They speak in euphemisms.  My doctor told me my prognosis wasn’t good.  That’s the code for: what you have is serious and we will have a hard time treating it.   The doctor sent me home with instructions over the Labor Day weekend to take it easy and to come back on Tuesday.  So, I tried to relax, but I worried all weekend.  I went back to the doctor’s office on Tuesday the 6th.  My hemoglobin had dropped below 8.0.  I was going to need a blood transfusion.  It would be my first of two.

That month of September introduced me to situations and experiences a healthy person never anticipates.  I was getting ready to acquire a new vocabulary full of acronyms and medical terms.  CLL, 17p, FLOW Test, CBC and TLS, just to name a few.   I also had to sit down with my 13-year old daughter and explain my condition.  She asked me if I was going to die.  It’s not a question you ever want to hear from your kid.  I told her that everyone dies sooner or later but I was seeing good doctors and they were going to help.  The truth was, I didn’t really know what was going to happen. It was the only time I can remember lying to her.  My life was entering a new normal.  From this point on, nothing was certain.

I probably had two blood tests a week that month.  During my blood test on the 25th, I wore my KC Royals ball cap.  The phlebotomist asked me where I had gotten it.  She was from Kansas and was a Royals fan.  I told her the story about all the baseballs and bat that Maddy and I had gotten over the last couple of years.  She asked if I would bring it in on my next visit.  My next visit was two days away on the 27th.  It was a red-letter day in that it was the day I was going to start the protocol to prepare me for the ibrutinib the next Monday.

On the 27th, I gathered up our baseball collection and headed to the doctor’s office.  I was scared and worried as I walked into the building.   I took a deep breath and asked God for a sign that things would be all right.  I proceeded to sign in and sat down waiting for my name to be called.  It’s a routine that I’ve done at least 100 times over the last 3 years.  They called me back for my labs about five minutes later.

I was showing the phlebotomist my bat and ball collection.  She made the comment that Mac’s grandmother was a patient at the practice too.  Coincidentally, she was the next patient in after me.  I told her to keep the bat and show it to Mac’s grandma, and if she had time, I’d like to talk with her.  I left to meet with the doctor.   While the doctor was explaining what to expect with the new meds, a nurse knocked on the door.  She asked if I could take a few minutes to talk with Mac’s grandmother.  I told I her I could.  We talked about baseballs and the bat.  I thanked her for raising such a generous family.  It goes without saying Mac has done a lot for the Asheville Community.  He has given a lot of his time and wealth back to Asheville.  We finished up our talk.   She left and I went back to get the medication instructions from my doctor.  I left the office somewhat hopeful.  Maybe meeting Mac’s grandmother was my sign that I begged God to give me.  I mean, what were the odds of meeting the grandmother of a major league baseball player who had given me his bat as a souvenir a year and a half earlier?  On one of the most fearful days of my life, I was introduced to this lady.  Still, I left the office scared, but went back to work.

At 7 pm that same night, I walked into a CVS drugstore near my house.  The drug store was six or seven miles away from my doctor’s office.  I was going to get a prescription filled.  It was a prophylactic medication to lower the uric acid in my system.  A side effect of the cancer drug is TLS, or Tumor Lysis Syndrome, a build up of uric acid. High levels of this acid can wreck your kidneys.  Anyway, I walked into the store and there, sitting in the waiting area, was Mac’s grandmother.   I walked up and reintroduced myself to her.  She remembered me from the afternoon.  She turned to the lady she was sitting with and introduced me to her.  She shook my hand and said she was Mac’s mother.   She proceeded to tell me the story of how she and her husband took my bat down to Mac in Atlanta to get it signed for my daughter.  As I remember it, she said it was a rainy, snowy weekend and she didn’t want to go, but he said we promised this little girl and he was going to get the bat signed.  I think Mac was headed to spring training soon after.  All I could say was “thank you”.  Not just for getting the bat signed, but for being there at that very moment to tell me this story.

I said earlier that sometimes you know in the moment that you are where you are destined to be.  I had that feeling 20 years earlier sitting across from Linda MacIlroy when we discovered we were neighbors and shared a back yard in little Red Oak, Iowa. Twenty years later, I’m talking with the mother and grandmother of a Major League baseball player who had given me a souvenir baseball bat a year and half earlier.

Through the years, one life event has led to another.  Because of Maddy, we’ve traveled to cities all over the country.  We’ve collected baseball souvenirs by being in the right place at the right time.  On September 27th, 2016, I walked into a doctor’s office scared and looking for an answer.  I was looking for a way to get rid of the uncertainty that comes with a cancer diagnosis.  I asked God for a sign and he answered, not once, but twice by introducing me to Mac’s grandmother.  She’s my guardian angel for sure.  I was in the right place doing the right thing at the right time.  I know things will be ok.   This is where I am supposed to be.   I took a picture of her and me that day.  I keep it on my phone to remind me that I will be okay; I look at it everyday.

Maddy and I have continued to get baseball souvenirs.  Grayson Greiner of the Detroit Tigers is a family friend.  He added to the bat and ball collection with an autographed bat and ball of his own during Tigers spring training in 2018.  In August of 2018, Maddy got another foul ball at Fenway Park during an Indians/ Red Sox game.

In March of 2019, I started becoming resistant to the ibrutinib.   It was not unexpected, but I had hoped to get more than 30 months of benefit from the drug.  Fortunately, there was a new drug available now that wasn’t available back in 2016.   As with all these new drugs, they come with risks.  Venetoclax works so quickly, it can overwhelm your system and cause it to shut down.   Even with all the precautions, complications can occur.  In May during my transition, I experienced these complications.  The transition protocol requires ramping up the amount of drug in your system over time.  You are also required to stay in the hospital for observation through this transition and ramp-up phase.  Initially, I seemed to tolerate the drug well but started having chills and some other difficulties.   On May 15th, I went back to the Dr.’s office in order to be admitted to the hospital for the second phase of the ramp-up.  I hadn’t felt well since I left the hospital the week earlier, but my problems weren’t out of hand yet.   I knew something wasn’t right.

As I left the doctor’s office, I noticed a couple sitting in the lab area of the practice.  This is where you get good news and where you can also get bad news.  I had my Boston Red Sox hat on, and I noticed the couple had on NY Yankees Caps.  I commented that I liked their hats.  Since the Red Sox and Yankees were rivals, I joked with the man.  I said we could be friends now, but all bets were off when September and the pennant race rolled around.  He laughed and said something to the effect that the season doesn’t even start until then.   I agreed and we laughed.   I wished him good news, he did the same and I left for the hospital.  I really didn’t feel well, and it was going to get worse.  I did a whole lot of bargaining with God during that 15-minute drive, but I made it to the hospital.   It was only later that I found out I had been talking to Mac’s father, and therefore, Mac’s grandmother’s son.   Again, I was stunned.  I had been in and out of that Dr’s office at least 100 times in the past three years and hadn’t run into the family again.  Now, on one of my worst days of dealing with this disease, I unknowingly talk to her son, the guy that took my bat four years ago and got it signed by his son.   I was in the right place at the right time for sure.

That night was bad.  My blood pressure spiked to 200/95, among other complications.  I didn’t know what was happening, or if I was going to get worse or better.  All I could think about was why, on this day, did Mac’s family appear in my life again.   I think it was just a reminder from God that I shouldn’t forget the reminders he had sent earlier, that I was going to be ok.   After this restless night, I woke up on Thursday the 16th, still alive.  After some additional testing, my doctor concluded that my cancer hadn’t mutated to something more aggressive.  He started treating it with steroids and a variety of other drugs.  I slowly started feeling better.

Cancer is a disease of uncertainty.  I have always been someone that needs to be certain.  I need to control things.  I don’t know why I have cancer.  Maybe I have cancer so researchers can learn something from me.  Maybe it’s to inspire others to fight when they don’t feel like it.  Maybe it’s God’s way of humbling me and teaching me patience.   I don’t know.  I don’t know why I seem to always be at the right place, at the right time.   I don’t know why we keep getting baseballs at ball games.  I don’t know why I have worked with a lady for the past 22 years who, literally, lived 150 feet from me in a little town in Iowa when I was 5 years old. I don’t know why I was taught finance by a professor whose father-in-law hired my dad for his first job out of college in my little Iowa hometown. I don’t know why I keep running into Mac’s family on my worst possible days of this disease, but I’m thankful that I do.

What I am certain of is that nothing in this life is random.  Every event in one’s life, both good and bad, happens for a reason and makes you a better person.   I also know that I’m still here telling this story. And every time do, I feel a little bit better. I’m pretty sure for now. I’m in the right place, at the right time and no matter what, I will always stay strong and never give up.  I know the end of my story has yet to be written.

John Hayler


John Hayler of Asheville, NC, Survivor of Complex Cytogenetic CLL involving 17p, 53TP and unmutated IVGH. Treated with Ibrutinib, Venetoclax and Rituximab. Refractory on all.  

Entering a Trial for the CAR-T product JCAR017 at Duke University.   Father to Maddy and renewed fan of all Major League Baseball, especially the Detroit Tigers. Always looking for signs that lead the way and thankful they always seem to be there.   

I’m a pilot and I’m looking forward to getting back in the air.  I’m also really looking forward to eating grapefruit again.   It’s the little things like grapefruit that I miss. 

Blessed to always be in the right place, at right time.  

 

Originally published in The CLL Society Tribune Q1 2021.