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!

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.