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.

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.

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.

These Boots Are Made For Walking

If you are going to have a stem cell transplant – either using your own or donated stem cells – I personally think the best thing you can do to insure a positive outcome and speedy recovery is to get in as good a physical shape as possible pre-transplant.  Then, after the transplant you need to start walking as soon as possible and for as much as possible.

You certainly don’t need to be running a marathon, just be walking at least a mile a day.  As you recover and get stronger, you can gradually increase the distances of your daily walks.  At first, your walks will really wipe you out; but don’t let that stop you!  Keep at it and you will get better and stronger.  Your doctors and nurses will also be encouraging you to do this.  I believe daily walking also reduces the chances of some side effects and infections from your transplant.

At the Duke Cancer Institute and their Adult Bone Marrow Transplant Center where I had both of my stem cell transplants, they have measured that 17 laps up and down the hallway of the transplant wing in the hospital equals a mile.  Twenty days after I received my brother’s stem cells, I was going to be released from the hospital to move to an apartment and then visit the clinic every day for the next two months.  So the night before I was to be discharged from the hospital, they disconnected my IV tube from my catheter.  I was so thrilled at the prospect of getting out of the hospital I was wide awake at 3:00am.  Because it was quiet and I didn’t want to bother anyone, I went into the hallway and shuffled/jogged the mile distance.  Believe me, I could barely move after that, but it was so worth it because it was my way of saying “f*#% you, leukemia!! You are not going to beat me!!”  When my doctor and nurses learned what I did at just twenty days post-transplant, they didn’t know what to say.

Now that it has been fourteen months since my transplant, I have built up to a three mile loop through my neighborhood that I do every morning.  In fact I can now run about 2 ½ miles of it, and walk the rest.  I am certainly not setting any speed records and it really does tire me out, but I can do it!  And you can too!  Just do a little bit each day and keep at it and gradually build it up.  It really does wonders for your mental outlook on everything.

Hellllpppp!!!!!!

So you are diagnosed with Multiple Myeloma (bone marrow cancer) or Leukemia.  It is time for a crash course in cancer education.  Also, if you have lost your job due to your treatments, what the hell are you going to do to make ends meet in the bills department?

For information about Multiple Myeloma, you can’t beat:

International Myeloma Foundation: myeloma.org/ for information and emotional support, including area support groups.

Multiple Myeloma Foundation: themmrf.org/ for information including new drugs that are “in the pipeline.”

For information about Leukemia and Lymphoma, the best is:

The Leukemia and Lymphoma Society: lls.org/ for information and support.  They also have some financial assistance programs, which will be addressed below.

Of course, there is also The American Cancer Society: cancer.org/ for information and support.

For financial support, you should Google: cancer financial support.  Be prepared, you will get a ton of different listings.  Unfortunately, you will need to slog through each of them to determine if they apply to you.  Some are cancer type specific and some are geographic area specific, and most require proof of financial need.  You should also ask your oncologist if their office has a person on staff to help you find local sources for financial assistance.  All of this is really a difficult burden on top of dealing with your cancer treatments, but unless you are financially sound, we really don’t have much choice in the matter.  Just keep at it and chase them down.

Here are some of the organizations that I found who can help with grants and financial support.  Most of them are only able to offer support when they have funds “on hand” which is not always year-round.

The Leukemia and Lymphoma Society: lls.org/  They have a $500 travel assistance program.  They also have a separate support fund specifically for people with Multiple Myeloma.

Patient Advocate Foundation: copays.org/  They have a program that will help pay for your co-payment on your medicines.

Daniel’s Grace Foundation: danielsgrace.org/  They are a great, all-volunteer organization that serves the Hampton Roads, VA area.  Their mission is “to ease the financial burden of cancer.”  They also have a scholarship program to help student whose lives have been affected by cancer.

Mercy Medical Angelsmercymedical.org/  Their mission is “to ensure that no one in need is denied medical care because of a lack of transportation.”  In my case, they provided a round trip airfare for my stem cell donor.

Angel Wheels: angelwheels.org/  They are “dedicated to providing non-emergency, long-distance ground transportation to financially disadvantaged, ambulatory patients who are traveling for treatment. “  A typical trip supported by Angel Wheels does not exceed 300 miles (one-way), and they do not normally handle trips within a local area or community. Exceptions are made on a case-by-case basis, routinely for cancer patients traveling daily for treatment.  Angel Wheels to Healing utilizes the following resources for assisting patients: Gas cards (provided to help off-set fuel cost for patients), Bus Tickets (Greyhound, Trailways, etc.) and Train Tickets (Amtrak).

Family Reach: familyreach.org/  They are a national nonprofit dedicated to alleviating the financial burden of cancer.

The Bone Marrow Foundation: bonemarrow.org/   They provide financial assistance and resources for patients, caregivers and survivors.

Lee’s Friends: leesfriends.org/  They are a Hampton Roads, VA based organization whose primary mission is “To offer person to person help and needed emotional and practical support to cancer patients and their families who are facing the crisis of diagnosis and treatment of cancer.”

Good Days: mygooddays.org/  For support and financial assistance.

Patient Resource: patientresource.com/Financial_Resources.aspx  This is a lengthy, but VERY comprehensive list of organizations that provide support.  Again, you just need to ge through them one by one to determine if they are a “fit” for you.

The Actors Fund: actorsfund.org/  They can provide some short term support “for everyone in entertainment. “

Also, most pharmaceutical companies have financial assistance programs to help if you cannot afford their drugs.

Don’t despair.  You can do it and find help!  GOOD LUCK!!

Learning How to Accept Help

I have always been the kind of guy saying “what can I do for you?”  I always had an over-developed sense of responsibility.  Helping coach the high school football team the year after I graduated from high school myself.  Stage managing professional productions and being responsible for the operations of very expensive shows starting when I was twenty years old.  Managing and fundraising for several theater companies and helping keep them open (when some of them probably should have closed!) to ensure serving their communities and providing work for stage artists.  And of course for my family.

As a result, it was very, very hard for me to learn to accept another person’s offer to help me.  Maybe it is because I am a guy, or it was my ego, my pride or just my deep, practically crushing feelings of insecurity.  “If I accepted someone’s help, then maybe I was a lesser person and not worthy of their caring – or even their love??”  Ooouuch, it hurts to say that!

These issues came home to roost with me sixteen years ago when I started my fight with Multiple Myeloma.  There is nothing like a cancer diagnosis to make you realize you can’t do everything by yourself.  My initial step in dealing with this emotional roadblock was my rationalization that by accepting someone’s help, I was giving something back to them.  That sounds nice and might be true to some degree and it “worked” for a little while, but I came to realize the plain and simple fact that I needed help. And there was no getting around it and no shame in it.

Even things like being so wiped out that I couldn’t drive myself for many months at a time.  And believe me, being a Southern California guy where you practically get in the car just to drive to the bathroom; it is a big deal to learn to ride in the passenger seat.  Thank God for Nancy and my family and their patience with me while I came to learn my new reality.

And that is the simple truth – you can’t do it by yourself.  You need to accept and be grateful for help.