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.

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.

What Have I Done Lately?

I never put much belief in the concept that there is a God watching over everything, meting out help only to certain people who prayed hard enough.  If this were true, then why do bad things happen to good people? To test us? I don’t think God is that cruel.

So are we just pin balls bouncing around our world?  In some ways we kind of are, but with the big caveat that by our actions toward others we can help create a much better world to be bouncing around in.  We may not be masters of our destinies, but I really do think we have the power to form a good path for our lives to follow.

But sometimes for no apparent reason our lives will fall onto a very difficult, rocky road.  Instead of belaboring why this has happened, I think the right thing to do is work to make the best of the situation either for ourselves or by helping others.  And yes this can be very hard and sometimes things do not go the way we want them to and things continue to get worse.

But I firmly believe that how we make the trip and live our lives is far more important than any end result.  The beauty truly comes from the efforts we put forth, not necessarily the finished product.

Instead of focusing on the selfish, immoral actions of a few people, I choose to celebrate the caring, loving, selfless actions both large and small that so many people make every day that makes this world a better place. Look at all those amazing young kids who are doing great things to raise money for the poor or cancer research or even animal rescues.  And how about the people who are donating their kidneys and parts of their livers to help others in need?  And on and on and on.

I am humbled by all of these people and their actions.  What have I done??  While it is smaller than donating a kidney (I don’t think anyone would want mine anyway!), I believe being there to help others in their time of need is hugely valuable.  When we do this, the bad things in life seem to shrink down and become more manageable.  And at the same time we become much better people by our actions that we take to make things better for others.

While believing in God and praying can create a good solid base for your life, I think what really matters most is not how hard you pray but how you act toward and for others.

Time Heals Everything

That is a great expression – “Time heals everything.”  In this humble reporter’s opinion (to quote the late, great Howard Cosell), it kind of does and it kind of doesn’t.

Time alone certainly doesn’t heal some illnesses (like cancer) but I have found it does work wonders for softening and eliminating memories of having been done wrong by someone or some other slight.  Not only does fighting a life threatening illness put things into a rather harsh perspective, but so does time.

I will be the first to admit that when you are younger, this is hard to believe.  At that time things seem so much bigger and worse than they eventually turn out to be.  I think that is in part because of our abilities to (mostly) take whatever bad things have been handed to us and then work to make the best of it.  And it usually takes time and perspective to see and understand that.

And this is what makes it so important to “be there” to help others as they struggle with whatever bad thing has been handed to them.  Very, very few of us can work through the big negative things in our lives without some help.  I have always believed that life is a team sport.  Sometimes you are the one needing help and sometimes you are the one helping others.

At the end of the day on this road of life, that is what really matters most.  Were you there to help others?

The New Normal

So you have made it through a stem cell transplant and are now mostly recovered.  Awesome, congratulations!  But be sure to adjust your expectations that you will quickly return to your baseline physical and mental condition from before your diagnosis.  While you will feel pretty good, know that it takes a long time to fully get back to what you were.  And some people never get back to 100%.

It really becomes a matter of managing your expectations and gradually working on your physical and mental recovery.  Just like the way you worked through your treatment regimen – patience and one day at a time – is the same thing you need to do with your long term recovery.  Stay with your daily workout routine, which should include walking, and try to gradually increase the level of workout and distance covered.  “Gradually” being the operative word here.  Don’t push yourself too hard or too fast, or you will find yourself being set back.  Just resolve yourself to the reality that you can’t rush things, no matter how badly you want to speed up your recovery time.  And you should also find something to challenge yourself mentally to give your brain a workout.  I found playing Scrabble worked well for me.

You will eventually get to a good physical and mental condition.  It might not be fully what you were before, but it is certainly better than the alternative!  While your physical recovery will be fairly easy to measure, your mental recovery is a trickier thing to quantify.  Depending on the level and intensity of your treatments, “chemo brain” can be a very real and annoying condition.

Don’t let yourself get too frustrated when you find you can’t remember things that you know you knew before your treatments.  You have to cut yourself some slack and admit this is what happens to a person after they go through the tough treatments you did.  At the risk of being the bearer of bad news, I don’t know if it ever comes back 100%.  I am now sixteen years post auto stem cell transplant and I still experience chemo brain moments.  And this was before my Leukemia treatments started a year and a half ago!  Maybe it is a bit of senior-ites, but I don’t think so.  Nancy is close to my age and she doesn’t seem to have these issues.

I think the best answer is to keep at it and to admit to yourself that it is okay when you hit a wall of physical endurance or mental clarity.  After all that we have been through, we deserve to be given a break once in a while.

Head in the Sand

Every time I go to the oncologist’s office, even if I am totally wiped out from my treatments or illness, all I have to do is look around the waiting room or the infusion room to realize how lucky I am.  Not lucky that I have cancer, but lucky that I am not doing worse than I am.   Because believe me, there are always a bunch of people who are worse off than you are at any given time.  On those days I always find myself saying a silent “thank you” for my relative good health and offering up a prayer for strength for the other patients dealing with their cancers.

Life is funny that way.  No matter how bad you think you have it, all you need to do is look up and pay attention to put things in perspective.  But we are normally so busy working or worrying about the matter at hand that we don’t look up.  I know because I was the poster boy for that.

It really is a shame that it takes a major setback to shake us up enough to pull our heads out of the ground and look around.  How fortunate are the few people who do not need to be slapped in the face to see the value of what they have right in front of them.  Hopefully we can all learn something from them and live our lives appreciating the good things we do have, instead of killing ourselves to get the things we don’t have.

Sounds easy to do, right?  But we all know it’s not.  We have to constantly make the conscious effort to live this way.  But speaking from experience I know it is worth it.