Redefining Multiple Myeloma

I've been thinking a lot about language lately.  As bizarre as it may seem, the way we view our world and how we respond to it comes down to word choice, and that is why I am waging a personal war on one word in particular.

The word that makes me cringe is the word 'incurable.'  I'm really tired of hearing this word.  I read it everywhere in the media, and sometimes even hear it from friends.  Usually, I hear it in the context of disease, as in "multiple myeloma is an incurable type of bone marrow cancer."

Merriam Webster defines 'incurable' as "not cureable; not likely to be changed or corrected."  So are we to believe that myeloma is  'incurable'-- as in, not likely to be changed or corrected? Really? Lots of researchers, oncologists, clinical trial nurses and patients would probably take issue with that statement.

My husband has smoldering multiple myeloma.  He was diagnosed 2 years ago at the age of 38, and every time I see 'incurable' in print I want to scream out, "YET!" As in, "there is not a cure yet, but there is good reason to hope that one will be developed soon."  I read articles every day about minimal residual disease in patients who have received bone marrow transplants and the latest and greatest cocktails of novel therapies. In fact, my husband participated in a vaccine trial last summer designed to attack myeloma cells and prevent smoldering patients from becoming symptomatic. Can you imagine?  A vaccine to protect you from myeloma progression! This is just one example of how the future looks better today for patients than it did ten years ago.  If there was no hope, if the results of this disease were some foregone conclusion, then why would so many millions be spent in research for a cure?

It's not that I'm in denial or somehow unaware of the gravity of our situation.  I know all the stats, like any other person impacted by this frightening disease. Even if I wanted to, how could I avoid the realities of myeloma, when I read excerpts like this one from the Fort Mills Times. While the article was written to highlight recent advances made by the Multiple Myeloma Research Foundation, there remained the usual sobering descriptions:

"Multiple myeloma is an incurable blood cancer. The five-year relative survival rate for multiple myeloma is approximately 43 percent, one of the lowest of all cancers. In 2013, more than 22,000 adults in the United States will be diagnosed with multiple myeloma and nearly 11,000 people are predicted to die from the disease." 

Boom. And it hit me. Once again, the ton of bricks that weigh down the hearts and minds of every myeloma patient (and the caretakers who love them).  Damaging words like 'incurable' and 'terminal' that always seem to be lurking in the background, waiting for the right moment to sucker-punch you when you least expect it. The truth is that the toughest thing about this disease is the uncertainty that goes with it: not knowing when it's going to get worse, wondering if your loved one will be able to tolerate treatment or how long you'll have together before it comes back. I find myself  praying that 5-10 years really means twenty, and that my husband will be well enough to live life, not suffer through it.

And then I remember this unshakable truth: no one knows what the future holds or how long he or she will live, healthy or not.  At least, myeloma helps us to appreciate the things that matter. Our time together is precious, and we know it. How many people spend their days bickering with family, stressing about job promotions, or obsessing about material things?  We used to stress about restoring a century old house, planning disagreements in our neighborhood, and how to fit in all our busy activities between church, family and work. All that changed in 2012. Now, we are simply grateful for today, and we are hopeful for tomorrow.

That's not to say that we don't do what needs to be done.  We continually read, research, and seek the best treatment we can, but our priorities have become very clear. We simply strive to live each day aware of the joy, beauty, and blessings that surround us in this life. We do our best to minimize time spent worrying, and we try to not surrender the peace that we worked so hard to build.  Are we always successful? No. Are there bad days? Of course there are, but I've found that Ben and Jerry's ice cream, a hot bubble bath and a good cry can do wonders.  And of course, there's always tomorrow with it's promise of hope, that you just don't get from words like 'incurable'. That's why I hate the word.  It takes away our peace, and our time is too precious to be wasted on an inaccurate word describing a disease with thousands of people focused on a cure.

So, I invite you to join me.  Let's find a better adjective for myeloma.  'Incurable' just won't work for me any longer. I will define this disease in my own terms, and while the terms may not always be positive, they will paint the picture of possibility. They will speak to quality research and the importance of our outlook, and most of all they will be hopeful.