Each of us has his or her own way of dealing with multiple myeloma and cancer.

I was reminded of this when I read a recent column here at The Myeloma Beacon by Dr. Arnie Goodman ^[1].  I hope you all read it.

From following Dr. Goodman’s columns of late, you’d know he hasn’t been in a particularly good way in his personal myeloma battle for some time now.  Right now he’s in a difficult place.

He’s in a position that most all of us are going to face someday where treatment regimens just aren’t effective any more.

That’s the problem with multiple myeloma.  It’s an insidious and unpredictable affliction for almost everyone who has the bad luck to get this most unfair cancer.

Some people live on for several years; the lucky few continue on for many years, often in complete remission.  Others pass away quickly, no matter what’s done for them.

Families and loved ones can remain bitter about the inexorable progress of myeloma.  The widow of a newspaper editor friend of mine who died from myeloma more than 15 years ago says, with a hint of what I’d say is resentment, that if her husband had the disease in this day and age, with the novel drugs, he might have lived longer.  She’s probably right, because even though his myeloma struck in an era when there were few treatments, and often they weren’t too effective, he lived for ten years.

Dr. Goodman in his column says he reads a lot where people are upbeat, positive, and even humorous about their myeloma experience.  But he says he’s not feeling any of that right now.

I don’t blame him.

As myeloma progresses, it, along with the side effects of treatments, can take a physical and psychic toll.  But the real crisis is when regimens just stop working.  This is usually accompanied by a frantic search for a salvage therapy to halt what can be a suddenly stunning decline.

It’s a damnable disease.  For some, it is terribly aggressive.  For many others, it’s just, well, aggressive, often in a sinister, quiet way.  As I said, only a tiny handful of us escape its progression and the nasty way this cancer works.

There are an unprecedented number of ways to treat myeloma – and some new drugs are, perhaps, close to getting approved.  It’s hoped that these drugs will delay for many that day when myeloma stops responding to treatment approaches.

Heck - how do you cope with that day, though, when it comes?  How do you keep from getting frustrated and depressed – experiencing a whole range of negative emotions?  I don’t think you can.

I collect little notes from articles about people with myeloma.  What you learn from them is that pretty much everyone fights hard to survive, and they are often upbeat about the fact that they are still alive and functioning as best as they can.  There are others, though, who have found that myeloma is debilitating them so much, that their lives have changed, and not in a good way.  From family, friends, and caregivers who live on, you see sadness and resignation – even bitterness – about a life taken too soon.

Generally in my columns, I try to be positive.  It’s not that I have some grand plan to be uplifting or inspirational.  I just seek to relate how I’ve dealt with this disease.  My life, in terms of what I do and how I live it, hasn’t markedly changed, except for the, um, “inconvenience” of myeloma, to put it mildly.  It’s not a minor inconvenience, of course.

The other day, I calculated that I have an average of two-and-a-half medical appointments a month.  That’s just the baseline – it doesn’t include when things go wrong and there are additional doctor visits and radiology and urgent care visits and hospital admissions and who-knows-what.  And then there are those days when I just feel like crap – and they aren’t as infrequent as I’d like, particularly with the dexamethasone ^[2] (Decadron) “crashes” every week.

Humor is one of those things I rely on to get me through.  I’m like the late Dean Martin, who once said, “I tried being serious once, and all I could get was construction work.”  (With apologies to all you tradesmen / women, and to my contractor son.)

It takes a while for my health care providers to understand or get used to my humor – at first they think I'm being blithe, which I'm not.  Eventually, they get it – some more quickly than others.  Of course, there are a rare few who have no sense of humor.  Everybody is a bit put off when I spout some dark, deathbed humor.

In looking back, it seems that some of the least popular columns I’ve written have been those where I’ve tried to be humorous.  Maybe too many folks just don’t think there’s anything amusing about myeloma and living with cancer.  Or, maybe I’m just not that funny.

But each of us has to come up with his or her own way of coping with this disease.