Have you ever really thought about the differences between symptomatic myeloma and smoldering myeloma?

If you ask newly diagnosed patients about their symptomatic myeloma, you’ll likely hear stories with common themes – like “we’re hitting the myeloma hard,” and how the treatment was scheduled with a sense of urgency. This type of myeloma usually has patients and their specialists leaping into action in hopes of bringing a quick and lasting remission. Of course, symptomatic multiple myeloma is an active disease with serious symptoms and repercussions, and it calls for an immediate response.

That’s not the case with smoldering myeloma. Even the word ‘smoldering’ implies a suspended state, like burning embers waiting to catch fire.

I thought about this recently when I was watching the movie, Master and Commander: The Far Side of the World, based upon the novel by Patrick O'Brian. The story focuses on the lives of 19^th century English sailors. The movie is action packed with tense and sometimes graphic drama, showing the perils of life at sea in a time of open hostilities with the French.

Can you imagine what the life of a sailor was really like at that time? It was undoubtedly dangerous, difficult work. There must have been periods of intense action. Without the tools and techniques of modern warfare, life at sea must have been very difficult. 

However, that’s not what seized my attention on this day. I was imagining all the waiting they must have endured. I bet there were long periods of time where they were alone with their thoughts, having to keep focused on the task at hand. I wonder if they ever grew accustomed to it?

How often must they have waited out the dark night, eyes straining in the darkness as they stood at their post? Alert. On guard. 

How many nights did they lie awake in their hammocks, with only the sound of the waves lapping upon the ship or the cry of an seagull to test their senses ... being vigilant, ready for whatever lurked out there in the vast unseen spaces around them? And these men were at sea for months, years even.

Sometimes I think that’s what smoldering myeloma is all about too. Waiting. Watching for the first signs of attack. Remaining vigilant in the dark.

Daniel, my husband, has been smoldering since 2012. In the beginning, we were like novices at sea for the first time. For the first few months, life was a whirlwind of questions. There was much to learn, and the diagnosis seemed at odds with the ‘watchful waiting’ standard of treatment. How odd to know the ‘enemy’ is at the gate, amassing its numbers, proliferating unabated. And yet you remain at your post. Waiting.

Instead of actively fighting Daniel’s cancer, we began our time to ‘wait’. With so much time on our hands, it was difficult not to imagine what lurked beneath the water or past the horizon. In time, however, the specialist’s visits and the routine lab work induced a rhythm, a work-song cadence that has become a part of our lives with smoldering myeloma.

We observed the more experienced sailors on the myeloma sea, and we gained knowledge that helped us work with Daniel’s specialist. We began to discern which questions to voice and which were best offered to the stars.

We learned that, for the Smoldering, patience is a hard-earned virtue.

We also came to understand the central truth: how we live on the calm waters is as important as how we react when the alarm sounds. Like all sailors, we practice the necessary drills. Daniel has annual MRIs, CT scans, and skeletal series that support his bi-monthly labs. He’s had two bone marrow aspirations and biopsies, and he has participated in a clinical trial for PVX-410, an immunotherapy vaccine for smoldering myeloma that The Beacon reported on in 2014.

We’ve learned to hope for the best and prepare for the worst. We have been drilling, practicing, and waiting for the ‘surprise attack’ for nearly four years.

There have been some close calls.

The lines of demarcation for diagnosis and guidance on how to treat smoldering disease have changed since Daniel and I first began his watchful, waiting shift. And, after much consideration, it became apparent to us that there wasn’t just one official handbook for all who smolder. In fact, in some ways we are in un­chartered waters with his case.

Most days we feel the winds at our back, but like any sailor squinting, straining to see the unknown in the dark sky, Daniel questions every pain and sore spot. Most people hardly notice the aches and pains that always burn long and low for the Smoldering.

He’ll ask me to put my finger on his back and apply pressure. As I do so, he’ll say, “Um, a little to the left,” or “No, closer to my spine.” As he tries to evaluate the discomfort, I wonder if we’re sailing into a new diagnosis. Are those pain points from being an early forty-something, or are they lesions burrowing their way into his bones? The Smoldering know that the difference between seizing today and fighting tomorrow is a hazy line on the horizon.

Like 19^th century sailors, we are patient, vigilant, and ready. Our lanterns burn brightly as we scan the waters for the action to come. We navigate by the stars above, and we pray for clear skies. We remain the Smoldering. On duty. Watchful. Waiting out the night.