Let me start out by saying that this is a “dex day” for me, so I’m writing this in the middle of the night.

As we’ve reduced my dose of dexamethasone ^[1] (Decadron) over time, I don’t awake as early in the night as I used to.  Also, in earlier times, the dex would wake me up, and bing! – I’d be fully awake.  Instantly.

That’s not so any more.  Nowadays, with the lower dose, I’m still tired when the dex brings me out of sleep mode.  I’m awake with virtually no hope of going back to sleep, but too tired to jump out of bed.  So, I’ll often laze around for an hour or so.

Lying there in bed, though, has proven to be a good time to think about various things and put them in perspective.  This is different from when people wake up in the middle of the night worrying about something, and can’t get back to sleep.

In my case, I choose the topics that I’m going to think about.  Mostly, I just spend the time considering things that I don’t have the time to give much thought to during “normal” waking hours.

This night, it was this column on my mind.

I began outlining what I’d been planning to write about, but, as often happens, I got off on another path and another concept.

The topic swirling about my brain was pain.

So that’s how I got here at the keyboard, listening to Johnny Cash at San Quentin while a waning quarter-moon beams down through my home office window.

I was moved to think about pain and multiple myeloma by an email from the spouse of a patient who is treated by the same doctor I see at Memorial Sloan-Kettering in New York City.

In the email, she recounted her husband’s ordeals with pain, primarily in his spinal column.

It started me thinking about how pain and multiple myeloma can go hand-in-hand.

It’s a challenge dealing with pain, which can beset us for any of a number of reasons – myeloma’s impact on one’s bones and side effects from treatment drugs strike me as the most common causes of pain.

It doesn’t help that often those of us with myeloma are older, and we already have related issues, particularly in terms of arthritis and our long, usually losing battle trying to keep cervical, thoracic, and lumbar discs from deteriorating as we age.

For example, I recently had an MRI on my neck, and the report was like a bad joke.  The first and last cervical discs, C1 and C7, were “normal.”  Every disc in between, however, has a problem of some type.  These issues preceded my myeloma diagnosis.

It was clear from the email I received the other day that her husband’s pain problems were much more extreme than mine.  He had to retire, for example, because he could no longer work as a high school teacher.  And he was only 52 when he was diagnosed, which is yet another example of this disease besetting younger people nowadays.

For disc problems, the most common repair surgery for myeloma patients is kyphoplasty, which helped alleviate his pain.  Not all of it, but he’s better than he was.

I feel I’ve been pretty lucky when it comes to pain.  My tolerance might also be greater than most people’s – maybe.

Pain can come at myeloma patients from a lot of directions.

I already talked about spinal disc problems, which can be particularly debilitating.  I’ve spoken with people whose myeloma treatment was delayed so that their disc problems could be addressed with kyphoplasty because they were in such pain.

Another example is that treatment with Revlimid ^[2] (lenalidomide) can cause really wicked cramps – particularly in legs in the middle of the night.

Then there’s the weirdness.  Since 2006, I’ve been assailed by something I call “mystery pain.”

I gave it that name because no one seems to know where it comes from, why it happens, or what causes it.

These attacks last about 16 hours, usually.  Mystery pain affects a single joint – most often a thumb, a toe, or a shoulder.  Many months can go by without my being beleaguered by the mystery pain.  Other times, it comes more frequently over a period of just a few weeks.  The pain can be pretty nasty.  Or not.

There’s a pattern.  It begins with a barely perceptible pain in a joint, which grows over a matter of hours to a pain that’s pretty intense, even debilitating for a while in some cases.  And then it begins to recede, and it fades away.

Over time, through treatments, stem cell transplants, and relapse, pain is something that myeloma patients have to deal with, and I’ve been no different.

Up until an episode last year, pain I’ve experienced generally hasn’t been all that difficult to contend with.  I would say nothing exceeded a “seven or eight” on that range that the medical folks always ask you about.  You know the one: “On a scale of one to ten, where would you put your pain.”

Well, last fall, the mystery pain struck me with a vengeance, in my left shoulder.

Instead of lasting less than a day, it went on at its most intense level for more than three days.  Completely incapacitating me.  I couldn’t write, I couldn’t type, I couldn’t sit up to read.  I could do nothing.  Nada.  The only thing I could do was lie on my right side on the couch and watch television.  Endlessly.

The first afternoon, my wife Linda came home and asked, “How’s the shoulder?”

My response was, “If they were to tell me that there was nothing that they could ever to do alleviate this pain, I’d have to shoot myself.”

I wasn’t kidding.

I learned something from this episode.  Now I understand much better how people get addicted to painkillers.

Putting aside the seriously addictive nature of those narcotic painkillers – oxy-this or oxy-that or whatever – I can see where severe on-going pain would lead someone to take these drugs non-stop.

If it’s the only way to control intense pain and to function, it’s hard to say who wouldn’t be at great risk of getting hooked on these drugs.

One last thought on this.

Painkillers are given to cancer patients like candy.  This is not a bad thing.  However, in all the years now that I’ve been given prescriptions for narcotic painkillers by various doctors, I don’t ever recall being counseled on the matter of addiction and the risks.  Not once.

I’ve had friends and acquaintances who I’ve seen using narcotic painkillers with quiet desperation.  Some try to hide it mostly, while others are pretty frank about how they have to manipulate the system to keep getting their supply.

None of them, though, recognized that they’d gone over the edge.