Norfolk’s Crepe Myrtles

A long time ago, the City Fathers and Mothers of Norfolk, VA (not Nebraska!) decided they would use Crepe Myrtles as the main tree to be planted around town.

There are plenty of Dogwood and Cherry trees which have quite lovely flowers, unfortunately they’ve rather short blooming periods in early Spring.  But the Crepe Myrtles start blooming in early Summer and last through the start of Fall.  And their colors are vibrant and beautiful – pink, red, fuchsia, lavender, purple and white. 

When the trees all start blooming, it makes me feel very happy.  It very much reminds me of when I was a kid and I got a brand new box of crayons.  You remember opening it and seeing all those brand new, sharp tipped crayons in the rainbow of colors?  That box of crayons held endless potential for all kinds of creative and wonderful things.  Well, that’s what the streets of Norfolk make me feel like during the Summer.  And I look forward to seeing it every year.

Okay, So What Now?

So you’ve beaten the odds and survived a year and a half of very tough treatments for Leukemia.  Congratulations!!  You know you should be so full of joy and enjoying each day as it comes along, and you really are.  But when you are quiet there is still that whisper of a voice in the back of your head reminding you of the seventy-five percent chance you are not going to survive past the next four years. 

I wonder if that is why I can no longer stand to hear the commercials on TV promoting some wonder drug or another.  I mean they really, really bug me now.  And don’t let me anywhere near those commercials promoting drugs to take during chemo!  I have to walk out of the room whenever they come on.

Maybe it is because I still am not one hundred percent recovered.  I mean I am almost there and can function fine; it’s just that last little edge isn’t back yet.  And that bugs me.  But maybe it is more the case that as many times as I tell myself I have accepted this as my new reality and have made my peace with whatever might come, I really haven’t.  Truth be told, that is a pretty huge thing to make your peace with.

In no way am I meaning to make this a “poor me” story in search of encouragement from others.  It is just my reality right now, and I am sure it is also the reality of many other people who have gone through similar situations and I hope are reading this.  Know that you are not alone.  I think it is best to call it what it is, cut myself some slack for having these feelings, continue to work at accepting this as my life now and to make the best of it.  And know that it will take some more time to fully “get there.”  And that’s okay, too.

And here are two GREAT reasons to be happy with every second of every day – my two (currently!) grand kids – Anne (age 6) and Porter (age 2 ½).  Yee-haw!!


Gobby’s Final Farewell

As I have mentioned in my earlier posts, Nancy’s Mom was a terrific and very funny lady. She was very close with her kids and grand kids, so it was hard on her when our family moved from Orange County to Norfolk, VA.  Even though she was in a wheelchair because her left leg had been amputated at the hip from soft tissue cancer, she insisted on coming out to visit us.  In hindsight, we think it was her wanting to make sure that we were all doing ok.

So Gobby and her caretaker flew out here.  We outfitted the house to accommodate her, including ramps and the bedroom on the ground floor.  What we didn’t know was how sick she actually was at that time.  While she was with us, she took a big turn for the worse.  Of course we tried to pack her up and hustle her onto a flight back home, but it was too late for that.  Instead, the great hospice nurse visited and quietly informed us that it was not going to be much longer.  Nancy’s brother Mike made it out to be with us.

At one point, in true Gobby style, she called us close to her and said “Whatever happens, don’t let them take me out of here without me having on a clean pair of panties.”  Nancy and Mike were a little exasperated that this was what she was worrying about.

After a while she did pass peacefully.  Then the police came and went, the ambulance came and went, the priest came and went and eventually the mortician came.  At that point her caretaker held up a pair of panties, because Gobby wasn’t wearing any.  Nancy and Mike immediately said “No way” they could not handle that.  So I took the panties and went to work.  Now I had never handled a dead body before, much less a one-legged seventy-five year old woman who was stiff as a board and starting to turn blue.  Here I was struggling to slide those panties up her one leg when I started laughing.  That’s when Nancy and Mike decided they needed to lend a hand.  So we were all wrestling this pair of panties up her leg and trying not to fall over laughing.  At this point I turned to Nancy and said “After what I have just seen, we don’t have to have sex again for another six months!”  We all lost it at that point because we realized that was Gobby’s final joke on all of us.

Later, when we were taking her ashes back to Orange County, we had to check her rented wheelchair at the airline ticket counter.  The lady working there politely asked “Who is the wheelchair for?”  Without missing a beat, my daughter Emily held up the carry-on bag with Gobby’s ashes and said “Her.”

The best part of it all though was when we were out on a boat in Dana Point Harbor to spread Gobby’s ashes and as we dumped the them overboard, a sea lion surfaced and started jumping through the ashes.  I don’t think you can get any better than that for a Final Goodbye!

What is a Stem Cell Transplant?

While I have mentioned numerous times in my posts that I have had two Stem Cell Transplants, I realized there are a lot of people who don’t really know what they are.  So I will give you my version of what they are and how they work, but please do not take this as gospel.  Talk with your doctor about the details.

The American Cancer Society has a very good description of Stem Cell Transplants at:

WebMD also has good descriptions:

While your body has all kinds of stem cells which contain the directions on how to create the organs in your body, I will be talking specifically about the stem cells that create the blood-making system in your bone marrow.  These stem cells are present in everyone’s blood stream.

When a person is diagnosed with Multiple Myeloma, this is actually a cancer of the bone marrow.  The bone marrow is the spongy material in the center of all your bones.  In this material are the cells that create your red blood cells (which carry oxygen throughout your body), your while blood cell (which serve as your disease-fighting immune system) and your platelets (which enables you to have blood clotting capabilities).  When these cells are created they are excreted through your bones and into your blood stream.  With Myeloma the cancer cells multiply in your bone marrow and crowd out the blood-creating cells.

As I have detailed in some of my earlier posts, there are a lot of different drugs and treatments both on hand and “in the pipeline” that are aimed at killing off the Myeloma cancer cells in the bone marrow.  In many cases, doctors recommend an Autologous (“Auto”) Stem Cell Transplant.

In these kinds of transplants, your doctor will initially give you different drugs and treatments, all of which are aimed at reducing the level of Multiple Myeloma in your bone marrow to as low as possible.  Many times they can’t completely eliminate the cancer, but the lower they can get it, the better.  These treatments can last anywhere from one month to several months.

Eventually they will get the cancer presence as low as possible, and then they will move into the transplant.  First they will give you a shot each day for a few days that will stimulate your body’s creation of your stem cells circulating in your blood stream.  Next they will go through the process of “harvesting” these stem cells from you.  This is a relatively painless process where they draw blood from one of your arms, send it through a machine that separates out the stem cells and puts them in a bag, and then returns your blood back into you in your other arm.  They have different things that impact how many of your stem cells they need to collect – your body size and if they are going to save a batch for a possible future second transplant.

Once they have collected your stem cells, it is time for the big guns.  Here is where they will give you a very serious and toxic mix of chemo drugs.  These drugs are intended to kill off all of your bone marrow throughout your body.  This is not fun you will likely get pretty sick during this part of the process.

After a few days and they determine the drugs have done their job and killed off all of your “old” and diseased bone marrow, they will infuse your stem cells back into your body.  Since they have killed off all of your old bone marrow, this infusion day is typically called Day 0 (sometimes referred to as your new birthday.)  Your stem cells will then migrate into your bone marrow and start setting up a new, “clean” shop where they will start creating all new, and hopefully disease-free blood cells.

Over the course of the next few weeks you will need to be monitored very closely.  First off, without any white blood cells you don’t have an immune system, so it is very easy to get sick and it can quickly develop into something very serious.  You will also be checked every day on the progress of your new blood creating system and if you need to have red blood cells or palettes infused, a boost given to your white blood cells, and/or an infusion of any of the many chemicals your body needs to survive.

Hopefully after a month or so, your new blood creating-system will be up and running in your bone marrow and spitting out disease-free blood cells.  But it will still take another month or two before you start to feel “normal” again.  As I described in an earlier post, going into the transplant in as good a shape as possible and then pushing yourself to start walking every day will be a great help in your recovery.

Sometimes doctors recommend a second, or tandem, transplant where you go through the entire routine again.  There are a lot of different opinions out there about this, so be sure to check around so you can make an informed decision.

In the case of my Acute Myeloid Leukemia, that was a cancer primarily of the white blood cells.  The “typical” treatment also includes a stem cell transplant, but this time using the stem cells from a matched donor.  This is where having several brothers and sisters comes in handy, since they are the most likely to be a match to you.  Otherwise you will need to check on your children and/or the National Bone Marrow Registry:

Once a matched donor is identified, the process is similar to the Auto Stem Cell Transplant, except the stem cells are harvested from the donor.  The big difference is the fact that your body’s natural reaction is to reject a new organ put into your body.  So you will be given countless drugs to hopefully mitigate and control this rejection process.  As a result, this kind of transplant is much, much tougher on your body.  I was told that I had about a 50/50 chance of surviving the first six months of the process.  That really hit me – basically the odds of a coin toss!

But this is when you need to pull yourself up and determine that you will be in the positive fifty percent!  It will be a long, hard fight, but you can do it.  I was told it typically takes a year and a half to two years before you get back to your pre-transplant baseline, and I have found this to be pretty accurate.  But just focus on one day of recovery at a time and before you know it, you will be there!

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:

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: 

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.”