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Myeloma, Party Of Two: Evolution

By: Tabitha Tow Burns; Published: January 27, 2017 @ 12:50 pm | Comments Disabled

It was a usual Sunday. We were in the early service, and I can tell you that I needed more than a bit of caffeine, when all of a sudden the minister asked, “Are you the same person that you were five years ago?”

“Wow,” I thought, “I’m not sure,” as I became lost in the recesses of my mind.

You might think that the answer to question is a simple one. You’ve had the same blood type since birth, for example. You have the same eye color. If you were good at math in school, you’re probably still good at it, and the things you deeply felt as a child you probably still feel.

I, personally, have always been a fan of constancy. Anyone who knows me knows that I am not a fan of change. I eat in the same restaurants, I wear my makeup the same way that I have for years. I still loathe the tomatoes that my four-year old self fed to the dog under the table, and I still get a little excited when I hear the Star Wars soundtrack. So, like me, maybe, you’re tempted to say that you’re basically the same person that you’ve always been.

But, what about those watershed moments in life? People often cite graduating from college or becoming a parent as moments when their lives were transformed. But we can do better, can’t we? How about that multiple myeloma diagnosis? Yep, that changed things, alright!

When I look at my husband Daniel, I see the same man that I met 15 years ago. His green eyes still sparkle when he gets tickled, and he still has the same dry sense of humor that drew me to him when we met as “young-uns.” He’s as fascinating to me – for all his quirks and his oddities (and perhaps because of them) – as he was when we met. He is the familiar best friend and touchstone of my life.

But I cannot deny it; much is changing within him – physically, and in other ways.

I can’t honestly say that Daniel is the same person as when we met. There have been measurable, physical changes in him.

In late 2011, he was diagnosed with MGUS, which was quickly amended to smoldering myeloma in early 2012. At that time, Daniel had a serum free light chain ratio of 3.9, a Bence Jones protein of 6 mg, and an M-spike of 1.4 g/dL. Then, after participating in a clinical trial for PVX410, a potential therapeutic vaccine, his smoldering myeloma remained stable and largely unchanged for a long period of time.

We didn’t get too comfortable, though. Things started trending up again in 2015, and over the last six months, his kappa serum free light chain level has fluctuated between 290 and 773 mg/l. His Bence Jones protein is at 43 mg, and his M-spike is at 2.7 g/dL.

And that’s just the physical changes. We know that treatment could begin anytime and we would enter a “new normal,” when the clock would begin ticking much louder.

We also know multiple myeloma touches us much more deeply than in physical ways, don’t we?

I’ve been here awhile now, and change usually seems like such a dirty word in the myeloma world. How desperately I’ve wished for us to return to 2002, the year when we met. I was a tiny-waisted, idealistic English teacher, and our new romance was neither threatened by the voluptuous, big-haired thing in the singles’ group nor this great leviathan we know as cancer. All the future was possibility, and our union was the stuff of legend (and Jane Austen novels).

But, enough of that. Author, psychiatrist, and holocaust survivor, Viktor Frankl said, “When we are no longer able to change a situation – we are challenged to change ourselves.”

I’d say that we’ve been challenged, alright. The better question is, “How are we doing?”

I won’t speak to Daniel’s inner thoughts, but I can tell you that I personally have seen a metamorphosis over these last five years. As we began this journey together, my first steps were in fear, even denial, wishing that somehow it was all a mistake. Since then, I have changed. I’ve accepted certain truths, and sought a caregiver’s “evolution towards wisdom.”

Daily, I pray for the tools I need: the strength to be silent, focused, and resilient; the restraint to support and not smother; and the peace to accept that life’s watershed moments – the good and the bad – are all beyond my control. I pray for a cure for multiple myeloma, and that Daniel will “smolder” without treatment until it can be found. But I know that all I can do is strive to live authentically, choose joy, and share love every day that we’ve been given together.

I’m not there yet. By no means do I float through my days in a Zen-like state of euphoria. I still grumble about messes that disrupt my “Sheldon Cooper-esque” dreams of ordered space, and I definitely need to find my happy place when I’m honking a virtual symphony in traffic. But despite these all too human shortcomings, I am changing. I am evolving – just as many of you are.

I read your comments and forum posts, and the columns of other Beacon writers, and I am inspired. Many of you have already undergone treat­ment, dealt with relapse, or are dealing with secondary cancers, but you are still living positively, and doing the best you can. And in so doing, you are making a roadmap for the rest of us. Thank you, friends, for your bravery. You seem to know the secret.

Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diag­nosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her pre­vi­ous­ly published columns here [1].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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