What Are the Odds of That?

When I was diagnosed with stage III Multiple Myeloma cancer at age 45, I was told that I would be lucky to get three years. Wow! They said at that time there is no cure for Multiple Myeloma, just treatments to extend your life.  BUT many great people and organizations are working like crazy to change that, so time is a very good thing.

After I recovered from the initial shock I came to realize that I needed to focus on what I could control in the near term and not dwell on long term matters.  Naturally, I got my affairs in order but I threw myself into living daily, getting into the best shape possible and my treatments.  I would be lying to you if I didn’t admit that the night before each of my next appointments I couldn’t sleep from the anxiety of what I would hear, but I came to accept that was “part of the gig.”

With the advances they have made in treatments, I believe the life expectancy at diagnosis is now five to seven years.  But the doctors are quick to point out these numbers are getting longer every day and many amazing new treatments and possible cures are on the near horizon.  While Las Vegas isn’t as big as it is because the odds are wrong, the good news for me is that I am now clocking in at sixteen years!  There is something very liberating about surviving way past your expiration date.  “Irv – can I have a price check on aisle four and what is the expiration date on that Keith Stava banana?”  While I am not out of the woods, each day is a gift. I know I sound like a Hallmark card, but the feelings are real.

The Acute Myeloid Leukemia diagnosis was a different kettle of fish.  At my diagnosis, I was told that I had about two weeks to start treatments, or it would be game over.  Once we mapped out my treatment plan, I asked “what were the odds.”  I was told that between the difficulties of the treatments and the high chance of infection during treatments, I had about a fifty-fifty chance of surviving the next six months.  Again, wow!  That was basically a flip of the coin.  But like before, I focused on getting into the best shape possible and on my daily treatments.  And they were right, it was very tough.  But the days passed and seven months later I was able to go home just in time for Father’s Day.  I was a walking skeleton at one hundred thirty pounds (I started at one eighty-five), but I was home and in my own bed. Heaven!

Since then I have gained about twenty pounds and am doing really pretty good.  One day I read that the actress Jill Clayburgh had died of the same Leukemia as I had and shortly after that I heard of another person dying from it.  I got to thinking you always hear about people dying from Leukemia, but never about them living after it.  So I went to my trusty computer and Googled life expectancy rates.  I found that for patients over sixty years old, only about twenty-five percent survive for five years or more.  Ouch!

When I asked my doctors about this, one of them said “yeaaah that’s true, but we don’t talk about that much.”  Another was quick to point out those numbers are a bit skewed because many of the people who get that Leukemia are older and cannot withstand the rigors of the treatments.  So again, after beating the odds on Multiple Myeloma, I choose to believe that I will be in the twenty-five percent to survive Leukemia. Believe it and live it!  The good news is that here I am, fourteen months since my stem cell transplant and there is no sign of Leukemia in me. Onward!

I am not a doctor and can only talk about my experiences.  PLEASE do not take my stories as facts for everyone.  Have an honest conversation with your doctor about all of this.

The Unwanted Visitor Next Door

As part of my initial treatments for Acute Myeloid Leukemia, I had to spend a month in the hospital getting serious chemo to “knock down” the presence of the cancer cells.  This was to buy some time before the cancer came back in order for me to find a matching stem cell donor (turned out to be my brother Kyle) and make the arrangements for a stem cell transplant (again!) at the Duke Cancer Institute.  So I spent the month of December parked in the oncology wing of Sentara Norfolk General Hospital.  It is a great hospital with a terrific staff of nurses and doctors.

About a week into my stay on a quiet night, I heard a lot of sounds coming from the room next door.  Not terribly loud, but enough to notice.  After a while, a young and visibly shaken nurse came into my room to take my vital signs.  I asked if she was okay and if she knew what the sounds were about.  She whispered that the lady next door had just passed.  I now know that nurses aren’t supposed to talk about that kind of thing with other patients, but she was pretty new on her job.  I guess it is not the best thing to be telling patients who are fighting for their lives that their next door neighbor had just died.

After the nurse left I found myself in deep prayer for the soul of the lady next door and for her family mourning her.  All I knew of her was that she was a fellow human being fighting cancer.  And that was more than enough of a connection for me.  As the tears rolled down my face, I realized they were both for her and for my own mortality.

Over the course of the rest of that month, I heard a couple similar things happen in the rooms near mine.  The passage from the bible struck me “even though I walk through the valley of the shadow of death I will fear no evil…”and I realized that I wasn’t just walking through the valley; I had pitched a tent and was camping out there!

But we cannot fear death.  We should only fear not living the best life possible.  And I know in my heart that can be accomplished by caring for and about others as much as we possibly can.

People

One part of fighting Multiple Myeloma (bone marrow cancer) and Leukemia is that it requires you to be parked in hospitals, anywhere from a week to a month or longer at a time.  I realize that I was lucky compared to many who have had to spend much longer periods of time in hospitals, but to me a month became interminable.  Don’t get me wrong, the hospitals were great and the nurses and doctors were terrific.  However, when they have to wake you up every three hours to check your vitals, draw blood, give you medications, etc, etc, etc, hospitals become the least restful place you have ever been.  But I always tried to remember that they were doing their jobs to help me and I tried to show appreciation for it.

I am not a big TV watcher so a “benefit” from all this was that I had lots and lots of quiet time to think.  You won’t appreciate how long a night is until you’ve spent time in a hospital bed.

Early in my theater career, I had an experience where a partnership turned bad and I was forced out of it.  At the time, it crushed me and I was quite angry at my perceived injustice of it all.  I did move on, but I carried the anger inside of me whenever I thought about the situation.  And it was a pretty deep anger.  I know that mine was hardly a unique situation, but that didn’t matter because it happened to me.

On one of those long nights in the hospital I returned to what happened all those years ago.  Then the anger at “how I was done wrong” rose up inside of me again.  But this time, the more I thought about it the more I could see some of the reasons why my ex-partner felt and acted the way he did.  They were still way out of line, but I could see where he was coming from.

And then it struck me that all this time I had been looking at things the wrong way.  I needed to accept that he was who he was, not the way I wanted him to be.  I had the power to let all of it go.  And I did.  At that point it was like the sky opened up over my bed.  I’m sure many of you will say “duhh!!” to this, but to me it was a genuine revelation.

Since then I have tried to remember this and live my life more at peace with myself.  I don’t always succeed in the short term, but I manage to get there over a little time.  I no longer sweat the “small stuff,” I don’t let petty things make me mad, I really try to hold my tongue, and I truly try to appreciate all the good things that I have – which so outweigh any minor inconvenience I am experiencing at the time.  And I honestly feel this has been a critical part in me surviving two cancers.

Don’t Mess With Texas – or Nancy!

I hope everyone who is fighting cancer is a lucky as I am, in that Nancy, my wife of 34 years (at least until she reads this post!) has been by my side as the best caregiver a person could ask for.  I truly, truly love her and for the life of me I can’t figure out why she has put up with me for all these years – but I am so grateful she has! Having someone next you through your treatments is critical.  Unfortunately I’ve seen several marriages break up over cancer diagnosis-es and treatments  because it was much harder than what they expected when they vowed “in sickness and in health, till death do us part.”

But Nancy also has a very tough side and she does not suffer fools lightly.  I still remember when she was pregnant with our third child, she took an AFP test that came back showing that our baby might have spinal biffida or Downs Syndrome.  And it was going to be two weeks before she could have an amnio centesus test to confirm if our baby was going to be alright or not.  Those were the two longest weeks of our lives!  All that time to think about the “what ifs.” It was really, really terrible.

When we finally got in for her amnio centesus appointment, the doctor sat us down in his office and tried to reassure Nancy that “this wasn’t going to hurt.”  Well, Nancy would have none of that.  She snapped back “oh yeah, have you ever had that long needle shoved into your stomach?  You’re just a stupid man, a stupid, stupid man!”  As the doctor’s jaw hit his desk, I shrank down to about two inches tall in the chair next to Nancy.  Fortunately, our daughter Emily was, and still is, healthy and perfect in every way.

To this day I still live by the mantra “Don’t be a stupid man!”  I don’t always succeed, but I try – I am a man after all! I love you, Nancy!

Let’s do this!

It all started in a corn field in Iowa.  Well, not really, but close and we’ll save that for a later post!

In 2002, a few days after my 45th birthday, I was diagnosed with Multiple Myeloma (bone marrow cancer).  Happy Birthday!  When I got the phone call from my oncologist informing me of the diagnosis, I had learned just enough about Myeloma to ask “what stage was it?”  When he told me it was stage 3, I said “well that’s not so bad, what out of 10?”  To which he replied “no, out of 3.”  Well, I thought that was hilarious and cracked myself up.  I think that was the point that I became good friends with my oncologist.

Multiple Myeloma is not a particularly cheery cancer.  It is a terminal cancer with no known cure – YET!  At the time I was told that I would be lucky to live three years.  After some pretty intense treatments (more of that in later posts) including a stem cell transplant using my own “cleaned up” stem cells, I am now going on 16 years being pretty much Myeloma-free.  And for the most part they have been GREAT years.

That is, except for the year and a half starting on November 30, 2016 when my oncologist informed me that I had a full blown case of Acute Myeloid Leukemia.  He told me I had to go into the hospital the next day where I would be for a month starting my intense treatments.  I said “come on, really? Drop everything and go in for the month of December?”  He told me that if I didn’t, I would be gone in two weeks.  Well, guess who dropped everything and went into the hospital the next day?  Merry Christmas!

I’ll talk more about the cause and treatments for my Leukemia in some later posts, but suffice to say it was a heck of a lot tougher than my Myeloma treatments.  It included another stem cell transplant, this time using my brother Kyle’s donated stem cells (love that Kyle!!!) and a much longer and tougher recovery period.  The good news is I am now 14 months post transplant and at this point there are no signs of Leukemia in me!  While they are all very happy, I don’t think my doctors quite know what to do with me.

Anyway, as most cancer patients who are undergoing treatments know, “see you in thirty days” is usually the time between appointments.  You have thirty days to worry about 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 awhile to move through it and get to the point where you can accept your situation and strive to make the best of it.

Hopefully my experiences can be an encouragement to others, and my crazy life can add a few laughs along the way.

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