Don’t Despair

Sixteen years ago when I was forty-five years old and diagnosed with Multiple Myeloma (bone marrow cancer) I was told that it was an incurable, terminal cancer.  I was also told that I would be lucky to live for three more years.  But after some serious chemo, a stem cell transplant using my own “cleaned up” stem cells and more maintenance drugs I have survived way past my initial expiration date.  And I think my doctors don’t quite know what to do with me!

With all of the great work being done around the world, they have developed several new drugs and therapies so that now they tell newly diagnosed patients the life expectancy is more like five to seven years.  And truth be told, with all of the new drugs “in the pipeline” there is a now a reasonable hope they might find a cure for Myeloma sometime in the near future.

While this sounds all well and great, if you have recently been diagnosed with Multiple Myeloma it is easy to fall into the black hole of “I have cancer.”  And you do and it is terrible.  But don’t despair.  There truly is hope.  Talk with your doctor.  If you don’t feel like your oncologist is up to speed on all the newer treatment options, then find another doctor who is.  Go online and find people in your area that have Myeloma and see what they think of their doctors.  Do not waste time worrying about hurting your doctor’s feelings. 

The International Myeloma Foundation has an amazing web of support groups across the country.  Track down the group nearest to you and reach out to them:  https://www.myeloma.org/support-groups

You HAVE to be your own best advocate and look out for yourself.  While Multiple Myeloma is not necessarily the imminent death sentence it used to be, it still is not a walk in the park.  It seems to me like it is now all about trying any and all treatments that are available to buy time while they continue to work toward finding a cure.

And at the same time, making the most of the time we have been given!

Taking the Bad with the Good

For me, this is a very tough post to write.  Celgene.  This is an international pharmaceutical company that had its first real financial success many years ago when it discovered that the banned drug Thalidomide was good for treating Multiple Myeloma (bone marrow cancer).  They obtained the patent on the drug and developed (and patented) a very strict drug disbursement program, due to the highly toxic nature of the drug.  The worst of this drug’s side effects are the severe birth defects it will cause.  The drug they started delivering was renamed Thalomid.  It has several other possible side effects including peripheral neuropathy – that is the killing off of the nerves in your hands and feet.

Celgene initially sold Thalomid for a few hundred dollars for a twenty-one day (one month) supply of pills.  Celgene increased the price of this drug steadily over the following years.  Several years ago Celgene developed a next-generation drug from Thalomid called Revlimid.  It is very similar to Thalomid with its severe birth defects side effect, but it is not quite as bad with causing peripheral neuropathy.  While other pharmaceutical companies have since developed their own drugs for Multiple Myeloma, Celgene’s Revlimid seems to still be the leading drug that is prescribed internationally to treat Multiple Myeloma. 

Another stated side effect of Thalomid and Revlimid is the five to ten percent possibility of the eventual development of a secondary cancer – like Leukemia.  Sixteen years ago when I was initially diagnosed with Multiple Myeloma, I was told my odds were that I would be lucky to live for three years.  So the small possibility of developing another cancer “somewhere down the road” versus the need to take what was then the only viable life-saving drug  was a no-brainer.  Of course, bring on the Thalomid and Revlimid!

After my initial treatments and stem cell transplant using my own “cleaned up” stem cells, I continued taking Revlimid for much of the next fifteen years as a maintenance therapy.  Unfortunately, guess who was in the five to ten percent group who might develop a secondary cancer – little old me!

Celgene has continued to increase its price for Revlimid to where it now charges somewhere near seven thousand dollars a month for a one month supply.  While I cannot find the Company’s quote to notate here, I understand that Celgene has stated they feel they are entitled to charge as much as “other life-saving drugs are charging.”  I calculated that over my fifteen years of treatment with their drugs, my insurance company and I paid nearly one million dollars to Celgene.

According to Celgene’s 2017 Annual Report:   http://files.shareholder.com/downloads/AMDA-262QUJ/6318532010x0x978672/138C3639-1839-499D-8191-34F9E08A0CBD/Celgene_AR_complete_PDF_041718.pdf 

Celgene collected over eight billion dollars in sales last year from Revlimid. Over eight BILLION dollars in one year alone!!  Celgene makes so much money from its portfolio of drugs that its CEO is paid over twelve million dollars a year, between his salary and company stock.

But Celgene is not run by fools.  They are very good at donating money to support the International Myeloma Foundation, the Multiple Myeloma Research Foundation and the Leukemia and Lymphoma Society as well as several other Myeloma support organizations and activities.  They also support some doctors around the world with their research efforts.  And of course, you will see their company logo included everywhere they make a donation.  Also, like most pharmaceutical companies, they have a program to provide low or no-cost drugs to patients who cannot afford them. 

However, here is an example of how Celgene’s support works.  They typically make an annual donation to the Leukemia and Lymphoma Society to support that organization’s fund to help Myeloma patient’s pay their medical insurance costs.  I personally know of one case of a Myeloma patient in North Carolina who turns in his four hundred dollar a month Medicare insurance receipt and he gets reimbursed for this cost by a grant from the LLS.  Great!  But then Medicare pays Celgene its seven thousand dollar a month cost for his Revlimid prescription.  Hmmmm. You do the math.

As much as I want to hate Celgene and blame it for my past year and a half life-threatening fight with Leukemia as well as my current unemployment, I know that I quite likely would not be here if it wasn’t for me taking their drugs.  I would have missed seeing my three children graduate from high school and college, their two weddings and two (and counting!) awesome grandchildren.

As you can tell, this has been a very hard thing for me to get my brain around.  At the end of the day I guess I have to accept the bad along with the good.

You Gotta Laugh

When I was younger, I was lucky to have been the Stage Manager and Production Manager for The Juliet Prowse Show for about six years.  We toured all over the place – Las Vegas, Reno, Tahoe, Atlantic City, London, South Africa and Australia.  And I got paid for it!!  How great was that?

We normally had a comic or another performer as the opening act so I got to hear their routines six times a week for weeks at a time.  Over the years we had a lot of different acts.  Some of them were (rim shots, please!!):

Foster Brooks (who always pretended to be drunk) – “I called my wife and told her I bought a condominium.  She told me she didn’t care and was going to keep taking the pill anyway.”

Freddie Roman (an old Borscht Belt comic) – “My kid was in third grade at Hebrew School but he was such a bad student they kicked him out.  So we sent him to the public school but he misbehaved so much they kicked him out, too.  Out of desperation we sent him to the local Catholic School.  He was perfect there.  After a couple weeks we went to meet with him and his teachers to find out why the change.  Our son pointed to the crucifix and said ‘After I saw what they did to the last Jewish kid who came here I decided I’d better behave.’”

Joan Rivers – “I had an IUD implanted, but whenever I drove down the street and crossed my legs the garage doors would open and close.”

Minnie Pearl

Roy Clark with his banjo

Norm Crosby (The Master of Malaprop) – “a cop of cuffee”

Phyllis Diller

Even Bertha, the elephant act at The Nugget in Lake Tahoe

One time we opened for Bill Cosby at the Hilton in Las Vegas.  On the opening night when Juliet’s show was over, the orchestra played a vamp while the scenery was changed and Bill Cosby was supposed to come on stage.  I was done after Juliet’s act, but when I looked around Bill Cosby was nowhere to be seen.  So I ran downstairs to his dressing room and said “Mr. Cosby, you’re on!!” to which he calmly replied “Oh yeah? How am I doing?”  Then he ambled onto the stage and did his act.

Bob Newhart – On the opening night he told me to shine a flashlight at him from the wings when he had five minutes left in his act and he would know to wrap things up.  Well, when I shone the flashlight at him he went into a whole routine about “Why is someone shining a flashlight at me? Who is that? Is that you, Keith? What do you want? Come on out here!” So I had to walk out onto the stage.  I had never been so embarrassed in my life.  Needless, to say, he only pulled that bit on me once.

Remembering all those guys still crack me up.

Sandman’s a Comin’

When you hear those three dreaded words “you’ve got cancer” you can’t help but start to think about death.  You really can’t avoid it, that’s just the way it works.  And depending on what type of cancer you have, its progression and your prognosis, you might start thinking A LOT about death.

You will go through several defined stages of emotions, which are better described by others more knowledgeable and articulate about them than me.  But they will include (not necessarily in order) anger, denial, more anger, despair, more anger and an eventual acceptance of the reality of your situation.  That is when you will quite literally reach the proverbial fork in the road.  Do you cave in and give up or do you accept this is your new reality, understand the specifics of your situation and start the fight.  And a fight it will be, make no mistake about that.

Of course you will need to get your affairs in order: a living will, a power of attorney and possibly a do not resuscitate order.  Some of these will be required by the hospital when you begin your treatments.  But over the course of the first month or so, you will have to accept the fact that you might die sometime soon.  Obviously you hope not, but you none the less have to make peace with yourself about this.  Maybe that is part of the blessings of the long, quiet days and nights in a hospital bed – to give you the opportunity to really look in the mirror at your life.  Take advantage of this time.  What has really mattered and what do you want to do with the rest of your life, however long it may be?

There really is no horse trading to be done here – no “if I get this then I will do that.”  Sorry to say that.  Don’t get me wrong, I think the power of prayer is hugely important but I personally have a real hard time believing that at this point God is looking to make a deal.  Lord knows I’ve said many a prayer asking for strength for the fight and to help me be a better person, but no Monte Hall business.

So, when you boil it all down, what really matters?  In my opinion, it is all about what have you done to help others – from your family to your community to the world at large.  I know, I know, that sounds incredibly trite and overly simplistic, but for myself I don’t know a better way to say it.  And if you are as fortunate as I have been in being given several years past my “expiration date,” you need to remember this and strive to live it every day.

Don’t Buy That Old Banana

I’ve learned something the hard way.  Pay attention to your body and how you are feeling.  Doing the typical guy thing of putting it off and not paying attention because it isn’t convenient is NOT the way to go.  Same with the old “I don’t have the extra money on hand right now to pay for a doctor visit.”  Maybe some women do this too, I don’t know, but I suspect they are much smarter than that.

One morning I woke up, went to shave and when I looked in the mirror I saw that I had bruises all over my chest and arms.  They weren’t painful and I called to Nancy and asked her if she had been slugging me the night before in our sleep.  Without missing a beat, she replied “not any more than usual.”  When she saw the bruises she immediately said that I need to go in and see my doctor.  Of course my immediate reaction was that I didn’t have time for this because of meetings at work.

But at Nancy’s insistence, I went in to my oncologist’s office.  While they were drawing my blood I was thinking how I had been feeling pretty run down lately, but then I had also been working very hard on a special event project at work.  But there was no avoiding that I was looking like a five day-old banana.

Come to find out that my blood counts were out of whack – everything was low, especially my platelets.  My doctor repeated the blood tests later in the week and my platelets had dropped even further.  My doctor then had them take a bone marrow biopsy.  This is where they drill into your hip and remove a little bit of your bone marrow, which is then sent to the lab.  This was on a Friday and my doctor said they should have an idea what is going on by the next Friday.  So I compartmentalized all of this and went back to work and my life.

Well, the next Tuesday afternoon I was on my way back to the office from a meeting and decided to partake of a guilty pleasure – a lunch from Taco Bell.  I walked back to my car intending to eat my lunch “on the road” on the way back to office when my doctor called me on my cell phone.  I sat in the Taco Bell parking lot listening to my doctor tell me that he was sorry to tell me that I had Acute Myeloid Leukemia.  After he explained to me what it was, he told me that I needed to go into the hospital the next day for a month of extreme chemo treatments, and then I was looking at a long period of treatments. 

I was stunned.  I asked if I really needed to go into the hospital the next day, December 1st, and spend all of December in the hospital.  He told me that if I didn’t, I would likely be dead in two weeks.  Well, guess who went into the hospital the next day?  That afternoon I drove to the office, packed up my stuff and put together instructions for the rest of the staff to cover my work, then went home and told Nancy.  Needless to say I lost my appetite and was not able to eat my delicious Taco Bell lunch.

Moral of the story – pay attention to your body and DO NOT put off having things checked out because it is inconvenient.  And maybe don’t go to Taco Bell for lunch, although I am not ready to totally write that one off yet!

Making Moments

Over my many years of producing and managing shows onstage, I’ve come to believe that beyond creating an entire piece of work for the audience to enjoy, what they are really taking away with them are specific moments from a show.

This became very clear to me when I looked back on the first National Tour and Broadway production of Peter Pan starring Cathy Rigby that we produced many years ago.  I have had the pleasure to work with many great Directors and Choreographers, but we were incredibly lucky to have secured Fran Soeder to be the Director of Peter Pan.  Fran made the point that we couldn’t do another straight revival of the show the way it had always been done – with silly pirates and a foppish Captain Hook.  Fran argued that kids today know about guns and nuclear war, so we had to do a show that was a little more realistic and with a sense of danger.

So to make the pirates look more menacing, they wore big heels on their boots and had large shoulder pads and tall hats.  And the Indians were made to look more real and scary.  While we didn’t change any of the existing dialogue in the show, we took out all of the silliness.  And the emotional high point in all prior productions of the show came late in the third act when Peter and Captain Hook had their big sword fight, the crocodile chased Hook overboard and everybody cheered. 

However, Fran contended that the real emotional high point of the show should be in the following scene, when Peter returns to the nursery only to find that Wendy has grown up and her own daughter, Jane, is sleeping in the bed.  Faced with this reality, Peter breaks down crying and Wendy leaves the room.  Then Fran’s genius showed when he went back to Barrie’s original book and took from it that Peter then pulls his dagger and moves toward the bed intending to kill the daughter asleep there.  But Peter realizes he can’t do it and breaks down crying.  This awakens Jane who starts talking with Peter and decides that she will now be Peter’s mother and fly off to Neverland with him.  Fran was right – this became the new emotional high point of the show.

It was proven to me early in the tour of the show when it was playing the huge Fox Theatre in Atlanta.  I was there to check up on the show and was standing at the back of a Sunday matinee performance, with over 3,000 people packed in (including about 1,500 kids) to see it.  At the last scene in the nursery when Peter pulls his dagger and moves toward the bed, a young boy’s voice rings out from the audience “Don’t do it, Peter!!!”  Well, I still get choked up to this day just thinking about it.  Fran was so right! We are in the business of “making moments.”

And Cathy was an amazing Peter Pan.  She stunned everyone with her acting and singing skills, much less her physical agility that she brought to her flying sequences.  And she was also one of the nicest people you would ever want to work with or for.  Here is a recording from a subsequent production of the show that Cathy did.

I was thinking that since the original two year tour, Cathy must have been on the road for at least ten years with one production or another of the show.  That’s ten years times eight shows a week to an average sized house of two thousand people means she performed the show to over eight million three hundred people.  And I think it is safe to say that half of the audiences were children, so Cathy was responsible for bringing over four million children into the theater, probably for the first time.  What an awesome legacy.  Broadway should be so grateful and thank Cathy for helping to build their future audiences.

And maybe in our lives we should always be trying to “make moments.”

The Depresh

Depression, or as Nancy’s Mom – Gobby – used to call it “The Depresh.”  You are likely going to have to deal with it at some point, or several points, in your diagnosis, treatments and recovery.

It can hit you in many ways, starting with the obvious “holy crap, I’ve got cancer” to the general Depresh that creeps in as you wage your daily fight to try to feel better and not succeeding at it.  Then there’s the great one about going back to work fifteen years ago after you have recovered sufficiently from your stem cell transplant and the President of the Board takes you out to lunch to tell you they will not be renewing your contract.  Also, it would be best if you don’t return to the office because it will make everyone feel uncomfortable knowing that your work decisions don’t matter since you won’t be continuing with the company at the end of your contract.    I learned they had decided they “couldn’t afford to have an Executive Director that was going to die on them.”  Nice!

I saw that when Robin Roberts returned to her job at Good Morning America after her stem cell transplant, they had all of the Muppets come on the show and welcome her back.  Unfortunately it doesn’t work like that for everyone. 

Including when I was diagnosed with Leukemia and began my year and a half of treatments, my employer had to let me go because they needed to have a fundraiser on staff, and I couldn’t do it.  Not that I blame them, but it was still pretty crushing losing a job with an organization that I loved.

Then there’s the Depresh that follows the joy of “hey, I am still alive” with looking at your one hundred thirty-five pound self in the mirror.  You look like an escapee from a prison camp!

So, not only are you fighting to regain some normalcy with your health, but you also have to find a new job to help support your family.  And we all know how much fun that can be as you get older.  We also know that you have to keep a positive outlook when you are doing the job search.  Good luck with that!  But the truth is you’ve simply got to do it.

You HAVE to share these feelings with your doctor.  They see this all the time with their patients and they have a great range of drugs that can help lighten up the Depresh.  And there is no shame in taking these drugs!  Let’s be crystal clear on this – there is no shame in taking these drugs!  They are mostly mild, you won’t get addicted and you won’t be on them forever.  But you won’t be able to move forward without them.  Trust me, I know.

Multiple Myeloma Diagnosis

Unfortunately, for a lot of people their Multiple Myeloma can go un-diagnosed or misdiagnosed for a long time.  A lot of doctors just don’t think about it when they are presented with the symptoms.  These aren’t the only symptoms, but they can include:

  • wacky blood counts (red and white blood cells and platelets)
  • an excessive amount of calcium in your system messing up your kidneys
  • deteriorating bone and cartilage damage, especially in your spinal column

But once it is suspected, a bone marrow biopsy – where they drill into your hip and pull out some of your bone marrow for analysis in the lab – will quickly and definitively tell your doctor and you what is going on.  Once they get that information, your oncologist will lay out your treatment options and plan your course of action.  Here is where it is usually a good idea to get a second opinion on treatment options.  Your doctor should not be insulted by this and if he/she is, that doesn’t say a lot about your doctor.

My Multiple Myeloma diagnosis came in a little bit of a roundabout way.  At the time I was in a very stressful situation with someone I was working with.  Normally I am the calm person in the room, but this guy really knew how to push my buttons.  One day I noticed I had burst a blood vessel in the white of my eye.  Normally that is not a big deal, it just looks terrible.  A few days after it went down I popped one in my other eye.  That was enough for Nancy to make me go to my doctor for a blood pressure test.

Of course my GP couldn’t see me for several weeks, so I went in to see his Physician’s Assistant.  She said my pressure looked ok and she drew some blood for tests.  She called me the next day and told me I needed to come back to her office that day so she could draw some more blood. Hmmmmmm!  As I was sitting there and she was drawing more blood, she was talking about blood this and proteins that.  I was busy thinking about the company’s annual budget and our upcoming Board meeting.  To me she sounded like the Charlie Brown teacher “wah-wah wah-wah.”

But then she said she had made an appointment for me with another doctor for the next morning.  That instantly made me start paying attention – doctors usually don’t make appointments for you, much less without asking about it.  She said the appointment was with a hematologist.  When I asked what that was she said an oncologist.  That was when the truck hit me right between the eyes.

Lucky for me the Physician’s Assistant was as sharp as she was and suspected Multiple Myeloma.  It turned out I had a very advanced case where the cancer cells had taken over eighty-five percent of my bone marrow.  Not good!  But her detection of it literally saved my life.  I was also incredibly lucky to have been set up with the best hematologist in southeastern Virginia – Dr. Dean McGaughey at Virginia Oncology.

Killing Time in the Hospital

What can you expect to be able to do while you are in the hospital receiving chemo prior to your stem cell transplant?  Mostly likely, not much that requires any concentration or focus.  Those are hard to come by once the process starts.  You will be lucky to be able to remember what you had for lunch the day before!  Unfortunately that’s why you will not be able read and stay with any books.  And I just couldn’t stay focused on the TV or my cell phone.

But this doesn’t mean you should throw in the towel and lay there like a vegetable.  A very good friend who visited me early in my stay at the hospital was kind enough to bring me a word search puzzle magazine.  For me it was perfect! It wasn’t too hard, but it did require me to concentrate to find the words and circle them.  And I could easily put it down or pick it up as I felt like it.  I think that magazine helped keep me as mentally sharp as was possible and it certainly helped pass the time.

Nancy got into the adult coloring books, complete with a full set of colored marking pens.  I know that helped her keep her sanity during all those hours when she was sitting there next to my bed.

And as I have said in another post, you HAVE to make yourself get up and walk some every day.  This really is important.  But just keep focused on getting through one day at a time and before you know it, your strength will be coming back and you will be well on the road to your recovery.

There’s No Business Like Show Business

People are always asking me how I got started in show business.  First I stage managed the musicals at our high school for two years with my good friend Jeff Stehly (more about that in another post!).  Then at nineteen years old I stumbled into working in a costume shop owned by a classic theater character named Chuck Schulte.

One day shortly after I started working for Chuck, he asked me if I wanted to drive with him to Las Vegas to see the show he was running at the time.  The show was Juliet Prowse at the Desert Inn.  Coming from an all-boys Catholic high school in Anaheim, CA, I had never been to Las Vegas before, much less heard of Juliet Prowse.  So of course I said “sure!” and off we went to Las Vegas.

That evening we pulled up to the loading dock at the Desert Inn and went into the backstage of the theater.  We went straight to the backstage right wings where Chuck put on his headset to run the show and instructed me to stand off to the side and watch the show.

Like I said, I had never heard of Juliet Prowse before, so I didn’t know what to expect.  As the show started I could tell from the wings that she was a majorly talented dancer/singer complete with a full cast of dancers and big orchestra on stage.  And beautiful – she had legs that went on for days!

About ten minutes into the show Juliet runs off stage, comes right past me and says “oh, hello” and promptly goes into a full costume change right there next to me.  I later learned that she was claustrophobic and hated quick change dressing rooms.  She also figured that if you were backstage at a show, this was nothing you hadn’t seen before.  And when I say a full costume change, I mean everything!  There was nothing left to the imagination.  I just stood there like a statue trying to pretend like this was no big deal.  I think it was at that moment that I decided show business was for me.

Soon after that I became the stage manager for Juliet’s show for about the next six years.  We played Vegas, Reno, Atlantic City and we toured to Johannesburg and Cape Town in South Africa, Sydney, Melbourne and Adelaide in Australia and we even played the Palladium in London!  That was all such a GREAT time!  She was the nicest person you would ever want to know, much less work for.  During that time I made several great friends who I am still close with today.

I still get such a laugh out of the times we were playing at the Desert Inn and the show would start with a big, loud orchestra intro which led into a drum roll and then nineteen year-old me on a backstage microphone sounding like Joe Vegas saying “Ladies and Gentlemen, the Crystal Room at the Desert Inn is proud to present, Miss… Juliet… Prowse!!”  I love show business!