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?

Theater Ghost Stories

In honor of Halloween, I thought I would recount my interactions with theater ghosts throughout my career.  First off, I am a believer that some forms of ghosts do exist.  All you have to do is sit in a church or a theater and feel the energy from the crowd to know that emotional energy is very tangible.  And since they say energy cannot be destroyed, I don’t think it is farfetched to believe that some form of that energy remains in a place and can sometimes be experienced physically.

When I was young and working at the Sacramento Music Circus tent theater, we were doing a production of Camelot.  Since it was summer stock with “star” casting, John Gray was King Arthur, Anne Jeffreys was Guinevere and Harve Presnell was Lancelot.  Even though this was a long time ago, it was still probably the oldest cast to ever play those roles!

There is a scene in the show when Lancelot supposedly brings a fallen knight back to life.  Now Harve Presnell was known best for playing light-hearted roles, but one evening when I was standing at the rear of the audience’s seats and Harve played that scene I swear I could feel the waves of emotion pouring from the audience.  It was as real and physical as if I was in the ocean feeling the waves roll over me.  It was really something.

Another time when I was stage managing Juliet Prowse’s show, we were on tour in Australia.  One evening we were loading into a beautiful, hundred year old opera house in either Adelaide or Melbourne.  I wanted to check out the acoustics of the house so I worked my way from backstage through the dressing rooms up to the top balcony.  It was pretty cool how well I could hear the crew’s voices all the way up in the rear of that balcony.

As I worked my way from the balcony, I went down the front stair cases through the theater lobbies.  Most of the lights were out but I was able to feel my way along with the help of the hand rails.  Off to the side of one lobby I saw the lights on in a room and the shadows of a crew cleaning up in a kitchen.  Along with that I heard the typical sounds of a kitchen clean up – the clanging of trays, voices and the sound of glasses being put away.

I called out a “hello” and suddenly the sounds ceased and the shadows disappeared.  All of the hairs stood up on the back of my neck and I hustled the rest of the way back to the stage.  When I got to the stage, I mentioned to some of the crew that I saw the catering kitchen off the lobby.  They all looked strangely at me and said what was I talking about?  There was no kitchen up there.  Yeesh!  They must have thought “just another crazy Yank.”

I also worked for thirteen years at the Wells Theatre, a beautiful one hundred and five year old theater in Norfolk, VA.  Over the years I heard many credible stories of the five different ghosts who haunt that theater.  While I never personally experienced any of them specifically, there were many times when I was in there alone and I could definitely feel their presence.

Boo!

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.

Broadway Joe

Having spent most of my life in Show Business, I have gotten to do a lot of fun things.  One of them was when I was a young, twenty-two year old stage manager at the San Bernardino Civic Light Opera which back then about an hour and a half drive east of Los Angeles.  The production was of the not-so-well-known musical Li’l Abner, of the comic strip fame.  However, the production starred the VERY well-known Joe Namath in the title role.

I believe he was about thirty-eight years old at the time and he had done a couple of other musicals in the Midwest prior to our production.  While he may not have been called “Broadway Joe” for his musical theater talents, he was decent in the role and he sure packed in the audience.

He was also one of the nicest guys you would ever want to work with.  He respected the business and everyone else in the show, even the actress who had to carry around a little pig at every performance.  Show Business – go figure!

Every time I would go into his dressing room after the show, he had his feet up and ice packs on his knees.  But we would talk through the show in detail because he was always striving to improve his performance.

And I will never forget seeing the line of women outside the stage door after every performance, just wanting to see Joe and get his autograph.  Broadway Joe comes to San Bernardino.

Next!!

My oncologist in Norfolk is part of a large practice called Virginia Oncology.  I’m not sure, but I think they are part of a national chain of oncology practices.  I don’t think there is anything worse on your nerves than going to an oncology office, especially for the first time.  The fear of the unknown combined with the feeling like the waiting room is a crowded bus terminal can be pretty overwhelming.

All of that being said, I am extremely happy with my oncologist and his level of expertise in the field.  Even though he really knows his stuff and stays current with all of the advancements in my types of cancer, he has never hesitated to suggest I get second opinions or even have complicated procedures performed at the Duke Cancer Center, which is only a three hour drive away.  I realize how lucky I am to have such a great doctor and I know that not everyone in my circumstance can say the same thing.

If you are going through cancer treatments, DO NOT settle for care that you don’t feel good about.  Just because they are the ones wearing the white coats doesn’t mean you don’t have the right to the care and treatment that you deserve.  This includes talking with you in language you can understand and spending time with you until you fully understand what is going on.

If you need to find a doctor near you who specializes in Multiple Myeloma or Leukemia, these websites can be a great help:

The International Myeloma Foundation:  https://www.myeloma.org/are-you-newly-diagnosed

The Multiple Myeloma Research Foundation:  https://themmrf.org/multiple-myeloma/resources/

The Leukemia and Lymphoma Society:  http://www.lls.org/

I cannot stress it enough, DO NOT settle for insufficient care.  We really don’t get second chances with our situations, so you have to be your own best advocate!

South Africa

The other day a friend reminded me that it was Juliet Prowse’s birthday and we shared some memories of what an amazingly talented dancer and performer she was.  I also remember from working with her how kind and gracious she was.  There was the time in her dressing room in Las Vegas between shows when Elvis showed up to see her.  Of course we were all hanging around her dressing room lounge area and I still remember Juliet admonishing Elvis if he was really taking all the vitamins she had had given him.  “Yes, mam” was all he replied as he hung his head with embarrassment because we all knew he wasn’t taking them.

I was also lucky enough at the age of twenty to travel to South Africa with her show in 1977 to perform in Johannesburg and Cape Town.  I’ll never forget flying into Johannesburg and seeing the rich deep red clay soil mixed with the white stucco houses with red clay tile roofs and all of the blooming purple jacaranda trees – really beautiful!

And there was the time in Cape Town, which I thought looked a lot like San Diego, when I visited a guy who had a tomato farm up in the hills outside of town.  As we stood in his field eating big tomatoes off the vine we looked out and I could see where the Indian and the Atlantic Oceans merged off the cape. I could clearly see the different colors of the water bumping up against each other.  Also, really beautiful.

But for all of the county’s natural beauty, we were there during the period of apartheid and to me being a young white guy from suburbia Orange County it was truly an eye opening experience.  In Johannesburg we played in a huge tent theater, but having already worked the tent theater at the Sacramento Music Circus I knew my way around.  But I found the African crew members didn’t quite know what to make of this young white guy who pitched in and worked alongside them.  I came to find out that was not the typical way things worked there.

The terrible toll of apartheid really struck me late one night after a show when I was walking through downtown outside our hotel.  I saw the garbage truck driving down the street picking up the trash – except the truck never stopped.  It just slowed down a little bit and the African crew who were emptying the cans into the truck had to run to keep up.  The truck kept moving and the crew had to keep running just to stay up.  I realized that if they didn’t, they would lose their job and their permission to be in town after dark. So, so very sad.

I will be forever grateful to Juliet for providing me with so many amazing opportunities.

Welcome To Tech Theater

Show Business and theater has a rich collection of traditions, which is not surprising considering how long theater has been around.  I am sure that among the first groups of cave men, there were a few individuals who were the storytellers.  I wonder if those special individuals were revered or made fun of as it seems to be today?

Books have been written about some of these traditions, like how it is bad luck to whistle backstage in a theater (someone might take it as their cue to lower a sandbag on a rope onto your head) or how it is bad luck to wish someone “good luck” before a show.  Instead you are supposed to say “merde” or “break a leg.”  Why? I have no idea.  And don’t get me started on where “break a leg” came from.  I have heard a bunch of different explanations for the source of that one.  And how it is bad luck to say the name of a certain Shakespearean play, so instead you say “the play whose name we cannot say.”

Then there is the tradition of teasing the newest and youngest person on the technical staff.  When I was getting started in theater as a young Production Assistant a loooong time ago, the sheets of colored material that you put in front of a stage light to get certain colored light were called “gels.”  I believe this was because they were made of some form of gelatin.  So the trick was to tell the new technician their job was to wash some of the gels.  What they didn’t know but soon found out was that when you put water on the gels they would melt into a messy goo.  Naturally the older technicians would take this very seriously while the young technician would freak out.  Ha ha ha!

But then the industry ruined this prank by making the gels out of plastic so they no longer melted.  But being the creative types they are, the technicians moved onto a new prank to pull on the young staff.  To be heard onstage, actors all wear small body microphones.  In order to keep the microphone pack (about the size of a box of cigarettes) from short circuiting from an actor’s sweat, the packs were put into rubber condoms.  Problem solved!  So at the beginning of each new show or season of shows, the tradition was to make the youngest, newest technician – man or woman – be given he job to locate and go out and purchase a whole case of condoms. Again, ha ha ha!

But now with the internet, a person can go online, place an order and have the case delivered to the theater – which still raises several eyebrows from the FedEx delivery person.  Those trashy show folk!  Now that I have been away from show business for a while, I have lost track of what is the most current form of torture that is inflicted on the new technicians but I sure they have come up with a few good ones.