Just Keep Swimming

Keep moving forward. I truly believe that is the key to surviving cancer and its treatments. Trust me; I’ve been through the meat grinder enough times to know. After an auto stem cell transplant 17 years ago using my own “cleaned up” stem cells to fight back my Multiple Myeloma bone marrow cancer and then another stem cell transplant 3 years ago using my brother’s donated stem cells to beat down my Leukemia, the secret is to keep moving ahead. Even if you can’t tell that you’re making any progress, a day will turn into two days, then a week, then a month and before you know it, several months will have passed and you have gotten stronger and stronger. You will find that things are much better and will feel like you can live your life again. That’s when you realize cancer does not rule your everyday life. You do.

After my first transplant and I was lying in the hospital bed, totally wiped out and feeling a little sorry for myself, it was my daughter who quoted the fish from the movie Finding Nemo – “just keep swimming, just keep swimming, just keep swimming, swimming, swimming.” So simple, but so right on.

I have talked with several people who were about to have a transplant and they would ask how it was going to go. I haven’t lied to them or sugar coated it. The truth is it really is a hard process to go through. In the case of my Leukemia transplant, when I was starting my treatment I asked my doctor what my odds were. He told me I had a 50-50 chance of surviving the next 6 months, including the transplant. Hell, that’s basically a coin flip! But I chose to be in the positive 50 percent and focused on taking things one day at a time. Like my daughter said – “keep swimming.”

I wish that for everyone who is going through a difficult time. Keep going. Just keep going. Things will get better.

The Quiet Hero

I come from a big family – I was number four out of eight kids. My brother Jeff was just one year younger than me. He and our younger brother, Kyle, who was three years younger than me, were always a pretty close-knit “team.”  Jeff grew to be a big guy, but he was also a thoughtful, sensitive and quiet man with a huge heart. If you ever needed someone to talk to or needed a hand with a project, Jeff was always the first one there. And not just for me and our family, but for his circle of friends, his church and his business associates. Needless to say, he was also an amazing husband and father for his family.

Even though he was younger than me, for all of these reasons he truly became the person I looked up to the most.

Tragically, Jeff’s life was cut way too short when he died five years ago at just 56 years old. He died of complications from the Lymphoma he had been quietly fighting for most of his adult life. By “quietly” I really mean that. He never complained and rarely spoke about his condition, even when we pressed him to.

They say you can tell the true measure of a man by what he leaves behind. You couldn’t find better proof of that than Jeff’s amazing wife Patty and their four awesome children – Gabrielle, Ben, Nate and Zach. Right from the start, Patty was the perfect fit with Jeff. Even though she was by nature a quiet person, she was never intimidated by our large, raucous family that surrounded Jeff. And the strength she has demonstrated over the past five years is an example for us all. It is so great to see what terrific adults Jeff’s kids have all grown up to become. I am so proud of all of them and enjoy their company immensely every time I see them.

Every day I strive to be as good of a man as Jeff was.

What Are You Up To?

“Didn’t I hear you had Leukemia? So how are you doing and what are you up to?”

Or, “Didn’t you have some kind of cancer? So how are you doing now?”

Or, “After I heard about your cancer, I thought you had died!”

Now I kind of smile as I recall the many times I’ve heard these well-intentioned queries. That’s because I have gone through the cancer meat grinder (twice!) and come out the other side. I know and appreciate what a gift I have been given to be doing as well as I am.

And yes, I know, I know, I am not cured and that either of the cancers – Multiple Myeloma or Leukemia – have a very high chance of one or both of them coming back to bite me in the ass. But you know what, I am doing incredibly well right now and I am not wasting a moment of it.

I hear stories of the selfless things people are doing to help others and it makes me very proud to be part of a society filled with so many amazing people. Even young kids are out there doing things to make the world a better place.

In my own small way I am striving to do the same thing.  I try to always be the best husband, father and grandfather I can be. And I try to be a contributor to the good of our community by being a supportive friend to those in need and by extending random acts of kindness to others. I also hope some of my blog posts have given encouragement to others in my situation.

And for the past six months I have been incredibly fortunate to be working as the fundraiser for Mercy Medical Angels. This non-profit organization is the nation’s largest provider of free transportation to those in financial need to reach their medical treatments. We are helping people in all 50 states. After spending my career in show business, which I loved, I know in my heart this is where I am supposed to be right now. This is what I should be doing at this point in my life and I am very lucky to have been given the opportunity to do it. And I plan on doing it and helping as many people as possible for as long as I am able.

And that is a pretty great thing to be up to.

A Gift

I am about to reach the two year anniversary from my stem cell transplant for my Acute Myeloid Leukemia treatment.  This was my transplant at Duke that used my brother Kyle’s donated stem cells.  That was a tough, tough three months’ worth of treatments.  And my recovery took until just a few months ago for me to be about 95% back.

I realize how lucky I am.  The odds for someone my age with this Leukemia are only a 25% chance of surviving for five years or more.  That’s not very encouraging!  However, my doctors have told me that the majority of patients whose Leukemia relapses usually happens in the first two years after the transplant.  After that, the chances of the Leukemia coming back drop off dramatically.  So I am not in the clear yet, but each month that goes by without a sign of relapse puts it further and further in the rear view mirror.

It is so crazy to think about what I have been through and survived.  When I had my first stem cell transplant at Duke seventeen years ago using my own “cleaned up” stem cells for my Multiple Myeloma (bone marrow cancer) treatment, I was humbled by my experiences.  I was very grateful for my recovery from those treatments and subsequent relatively good health. At the time I was told that I would be lucky to live for three years and yet I have beaten that prognosis by a mile.  I think my doctors don’t quite know what to make of me.

But as the years went by and I continued to show no real signs of a relapse of that cancer, I grew complacent.  I did not retain my realization of how lucky I was to still be alive and I lost a lot of my gratitude for what I had been given.  Maybe that was just the result of living my life again.  While I did appreciate the big moments with my family – my two son’s weddings and the birth of my first two grandchildren – I let myself get caught up with the grind of daily life.  I let work issues start to run my life (again) and I eventually became a very stressed out, impatient and unhappy person.  And as a result, I was not nearly as good of a person as I should have been.

Then I got hit by the Leukemia train.  After several brushes with not surviving, I am now on the other side of that meat grinder!  During the past two years of treatments and recovery I have regained my deep appreciation for the third chance I have been given.  I fully realize that I am not out of the woods yet, including the high probability that my Multiple Myeloma will likely return at some point.  But I am not wasting a moment of the gift I have been given.

I am now a much more patient and forgiving person.  Someone is driving too slow ahead of me – who cares?  Someone says something that I don’t agree with – so what?  And the job I have now is the perfect place for me to be at this point in my life.  I am helping raise donations to provide free transportation for people in need to reach their critical medical treatments.  How totally great is that?

I can’t believe that it has taken two cancers for me to finally get my head screwed on straight.  But what matters most is that I am here now and I will continue to appreciate every day of this gift of life I have been given and do as much as I can to help others for as long as I am here.

It Isn’t Easy

Sorry I haven’t posted anything in a while, but I have been a little sidetracked by the holidays, good family stuff and a new job. Yeaa!

For some reason today I started remembering my time early in my show business career when I had the great privilege to work as the stage manager for Juliet Prowse and her show.  The last year or so of her time doing shows in Las Vegas she did a show centered around “dance.”  It was a natural and perfect topic for her, considering what an amazing dancer she was. 

In the show she and the company would perform new dances to several classic songs, everything from “Shall We Dance” to “Mr. Bojangles” to “All That Jazz.”  But the highlight of the show for me was at the very end after all these awesome song and dance numbers she would walk onto stage all by herself, dressed in her simple dressing robe, stand still at center stage and sing a song written by Billy Barnes – “It Isn’t Easy.”  The lyrics went:

Dancing looks easy, doesn’t it?

You sweat a little, get out of breath a little

But by and large, it looks like a simple thing

So what’s the great big deal?

If given half the chance

You climb upon a stage – hell, anyone can dance.

Right?????

It may look easy – it isn’t easy

It may look simple – it isn’t simple at all

When you consider all the hours and hours of rehearsing

The millions of steps and combinations

The lifetime of classes, lessons and learning

The training the body, the stretching and turning

It may look painless – it’s very painful

It looks like nothing to it – it isn’t nothing at all

To spend a lifetime dancing in some depressing little hall

It isn’t easy at all

But ask a dancer what she’d do if she had a second chance

This dancer would tell you – I’d dance.

Then she would say good night, take a deep bow and we would bring the curtain down to end the show.  I LOVED that number and the way Juliet performed it.   I still remember every word of it today.  And through the genius of Billy Barnes, it perfectly summed up Juliet’s life.

Motivation

When I was originally diagnosed with Multiple Myeloma (bone marrow cancer) I was told I would be lucky to live for three more years.  Well that was sixteen years ago, so the joke is on them!  I think my doctors don’t quite know what to do with me. 

And when I was diagnosed with Acute Myeloid Leukemia I was given a fifty-fifty chance of surviving the next six months.  Then I was told that only twenty-five percent of patients my age live for five years or more.  That was two years ago and here I am still going strong!

During all of these “bonus years” I have seen my two sons and one daughter graduate from college, watch my two sons get married to wonderful women and now been here for the births of three awesome grandchildren.

We have had more than our share of tough times, but by sticking together we have managed to have many more fun times.  You will notice the family similarities.

 

 

For those of us who are fighting through the tough times, our motivation is not to make more money or to become famous.  It is to gain as many precious moments with our loved ones that we can squeeze out of the time given to us.

 

(from left:  Anne, Nancy, Wyatt, me and Porter)

Talk about motivation! As I have said before, life doesn’t get much better than this.

This is What I Choose

It was just two years ago I got the dreaded phone call from my oncologist.  I had been fighting Multiple Myeloma (bone marrow cancer) for the previous fifteen years and I had suddenly started seeing bruises all over my chest and arms.  After a couple weeks of blood tests and a bone marrow biopsy – where they “drill” into your hip and pull out a sample of your bone marrow for the lab to run tests on – my oncologist called to tell me I had Acute Myeloid Leukemia. 

My brain had a hard time registering this info.  I knew Leukemia was pretty serious stuff, but why would I have it?  It turned out the drug I had been taking over the past several years to fight off my Multiple Myeloma and very much keep me alive had likely caused my Leukemia.  My oncologist informed me I needed to go into the hospital the next day, where I would be for a month starting some heavy duty chemo treatments.  I said “come on, really?”  I needed to go into the hospital for the entire month of December?  Then he informed me that if I didn’t I would be dead in two weeks.  Well, guess who went into the hospital the next day? This guy!

That was the start of a long treatment process that included more stays in hospitals, more heavy chemo and eventually a stem cell transplant at Duke using one of my brother’s donated stem cells.  Love that Kyle!!  At the time I was told I had a fifty-fifty chance of surviving the next six months of treatments.  Hell, that’s a flip-of-the-coin.  But I told myself I could do it and I chose to be in the positive side of the fifty percent.  I was also very lucky to have such a great oncologist in Norfolk (Dr. Dean McGaughey really is the best!), all of the terrific doctors and nurses at Duke and most importantly the bottomless love and support from my wife, Nancy, my entire family and all my friends.

It was a tough fight, but I made it.  Several months ago I heard about someone dying from Leukemia and I got thinking that you never hear of someone living after Leukemia.  So I GTS (Googled that shit) and found out only twenty-five percent of people my age and up who have Acute Myeloid Leukemia survive for five years or more.  When I saw my doctors at Duke I asked them if this was true.  They told me sheepishly “yes, this is mostly true but we don’t talk about it much.” Well I would think not! 

But they told me I was on the younger end of the spectrum of people with this kind of Leukemia, so that was in my favor.  They also told me the majority of people who relapse usually do so within two years of their treatments.  Again, I chose to believe I would be in the twenty-five percent and here I am now three months shy of my two year anniversary of my stem cell transplant and doing great!!  Also, with the exciting new treatments being tested, especially the promising new CAR-T Cell therapy treatments there is starting to be a real chance for a cure.

As you can tell I am a firm believer in the “you make your own luck” theory, which is what I mean by “I choose” how things are going to turn out.  While I also know there is a lot more than that going on, like great doctors and a loving, supportive family, it all starts with you and your attitude.  Even if things don’t work out, at least you know you went down swinging.  As my Dad once told me “never give them a standing target!”  Thanks, Dad!

Multiple Myeloma Birthday

Nancy just reminded me that in another week it will be sixteen years since my first stem cell transplant (using my own stem cells) at Duke. Wow! Not bad considering at the time they said I would be lucky to get three years.

I was initially diagnosed in early April with a full blown case of Multiple Myeloma – nearly 85% of my bone marrow had been taken over by the Myeloma cancer cells.  I then went through seven months of aggressive treatments to beat down my cancer to the point when I could have a stem cell transplant.

During my treatments I wore a small pump under my business suit that was pushing timed doses of chemo into me; all the while I was still working as the Executive Director at Virginia Opera.  I remember sitting in Board meetings not letting on that anything was wrong and thinking how surreal it all was.

Even though the treatments were pretty intense, fortunately I managed them fairly well and never missed much time at work until November and December when I had to go to Duke for my transplant.  In hindsight, even that went well.  I mean it knocked me out and I had a few close calls with infections, but by early January I was back to work.  I wasn’t at 100%, but I managed.

Unfortunately I returned to a rather unwelcoming work environment.  The founding Artistic Director at the Opera did not like the fact that prior to my illness I would stand up to him and say “no” to his capricious and often volatile whims on how the company should be run.  In fact I learned that while I was at Duke, the Artistic Director used that opportunity to tell the Board the company could not afford to have its Executive Director die on them so it would be best to let me go.

As a result, on my first day back at work our Board President (who was a good guy) took me out to lunch and informed me that the company would not be renewing my contract when it expired.  Also, they had determined that it would be “confusing” to the staff to have me continue in my position knowing that I wouldn’t be staying with the company so I should just stay away from work until my contract ran out.  Welcome back!!

I was crushed.  Nothing like that had ever happened to me before.  And needless to say, I was very angry at the Artistic Director for his underhanded way of doing things.

But a couple years ago when I was in the hospital dealing with my Leukemia treatments I had a lot of time to think about things, including what happened to me at the Opera.  I realized there was no point in carrying my anger at the Artistic Director along with me.  It wasn’t helping matters and it certainly wasn’t healthy for me.  I came to understand that it was the Artistic Director’s issue, not mine.  It was incredibly “freeing” to let that anger go, like a load of rocks had been taken off my heart.

So November 20th is always a bittersweet day for me.  It was the day of my first transplant and is considered a person’s “birthday” because the transplant process brings you close to death then back to life again with the infusion of your stem cells.  While it marks a very difficult time in my life, Nancy, my family and I all consider it a day for celebrating.  And who can’t use an extra birthday?

Living Your Life Thirty Days at a Time

Most cancer patients who are undergoing treatments know that “see you in thirty days” is usually the time between doctor appointments.  You have thirty days to worry if the other shoe is going to drop or you can try to live your life.  Learning how to live your life in thirty day increments is a process and it takes a while to get to the point where you can accept your situation and strive to make the best of it.

It all sounds well and good when you write it down or repeat it to yourself, but it can sometimes be a real struggle to keep the “what if” thoughts from pushing their way from the back of your head to the fore front of your thoughts.

I have been very lucky in beating back my Multiple Myeloma (bone marrow cancer) and more recently my Leukemia.  But the odds of the Leukemia coming back are not at all in my favor.  They say that only twenty-five percent of the patients in my age group survive for five years or more, with the vast majority of recurrences happening within the first two years.  Being on the younger end of the patient spectrum is definitely in my favor, but still I am now a year and seven months from my stem cell transplant so I definitely feel the clock ticking.

I wish I was smart enough to give folks a magic formula on how to keep the clock’s ticking sound from drowning out everything else.  All I know is to keep myself busy and keep reminding myself to truly appreciate every day and all the good things that I have in my life right now.

And those good things all start with my family – my amazing wife Nancy, my three great kids and two daughters-in-law (who are like two of my own kids) and my two wonderful grand kids (with #3 on the way!).  From there the ripples of gratitude quickly extend out to my folks and the rest of my huge extended family and all of my dear friends on both the West and East coasts – and Europe come to think of it.  I am a very, very fortunate man, cancer be damned!

Count Your Blessings

Sometimes my own stupidity amazes me.  Lately I have been bogged down with “why aren’t things going better for me right now?” type of questions.    Without a doubt I have been given a second chance on my life and here I am wasting my time and emotional energy on negative, self-pitying thoughts.

I know it is normal human nature to have these kinds of thoughts, but come on!  I should know better than that.  Could some things be going better? Of course!  But I need to remember what I have been through and how few people have actually made it through the same battles and are here to talk about it.

I am humbled by this realization and am so very grateful for everything I have.  And it really is an incredibly long list of things I am so lucky to have, starting with my amazing wife Nancy.  I don’t know how I have been able to fool her these past thirty-five years into loving and caring for me as much as she does, but I will gratefully take it.

Then there are my three great kids and their wonderful spouses, who I love as if they were my own kids.  Then of course there are Anne and Porter, my grandchildren, and Three, who is due in early December.  I had always been told how great it is to be a grandparent, but the truth is it is ten times better than anything I was ever told.  As far as I’m concerned these kids can be pooping out gold bricks!

And I am so fortunate that both of my parents are still with us and doing as well as they are.  And of course all of my great brothers and sisters, their spouses, their kids, my aunts and uncles and their kids and their kids’ kids, my in-laws and their families, the list goes on and on.

I have read in several places that when men are on their deathbeds, they usually express the same regrets: they wish they hadn’t spent so much time at work and that they had kept in better contact with their friends.

I realize how lucky I am to still have three very dear friends from my days at Servite, the all-boys Catholic high school forty-five years ago.  Jeff Stehly, Mark McCallick, Tim Boulger and I were all on the football teams together, which explains part of our close bond but they are also just great guys.  While we now live on opposite coasts, I still stay in touch with them and I count my blessings for their friendship.

I can only hope that everyone else is as lucky as I truly am.