You may recall from my last column ^[1] that I was holding my breath. That was because I had a seemingly ominous test result that created some con­cern.

To recap a bit, for several years I have had an M-Spike that my doctor and I believe to be secondary monoclonal gammopathy of undetermined significance (MGUS). Assuming that we are correct – and all of the other test results seem to bear out that assumption – this M-spike is not a bad thing; it is benign.

The secondary MGUS M-spike was at 0.7 g/dl (7 g/l) in November, but in December it jumped to 1.4 g/dl (14 g/l). That is, it doubled. I was con­cerned. Maybe this was not secondary MGUS, since that phenomenon gen­er­ally is fairly stable, not prone to significant jumps in the space of a single month.

I consulted with my oncologist and we agreed that this reading might well be an aberration, especially since no other marker had changed. So we held our breath and waited.

Since that time I have had two sets of blood tests. The first, taken a week or so after my last column, showed an M-spike of 0.6 g/dl – pretty much in line with the results prior to the “aberrant” one. Last week I received another set of results which showed an M-spike of 0.4 g/dl.

So that’s a relief!

Things seem to be moving in the right direction.

Or are they?

I discussed this in prior columns and in the Beacon forums. Secondary MGUS is not well-understood. There have been a number of articles written on the subject, but they are “snapshot in time” aggregations of medical records with little to no follow-up. The condition has been thought to be a positive prognostic indicator, but some of the authors writing on the subject have disagreed.

So what to make of all of this?

On the one hand, the reduction in this “good M-spike” may be no cause for concern. After all, from its first appearance in October of 2013 through July of 2015, it has ranged between 0.1 g/dl to 0.4 g/dl before jumping into the 1.0 g/dl area and remaining there until October of last year. So now we are back to the area in which we started with this phenomenon.

So why worry?

We who have multiple myeloma or care for loved ones who have the disease know one thing for sure: there is always something to worry about. It may not consume us or lurk in our every thought, but it’s always out there.

What concerns me now is a comment my oncologist made early on in our discussions about secondary MGUS. He is an experienced myeloma specialist and has had a number of patients through the years who have had signs of secondary MGUS. He told me that, in his experience, when patients who have secondary MGUS lose that benign M-spike, they tend to relapse relatively quickly afterwards.

Should I be worried now that this good M-spike seems to be receding?

I don’t know!

More importantly, no one knows.

One of the frustrating aspects of dealing with multiple myeloma is that so much is unknown. Why do certain treatments work for one patient but not another despite the fact that their circumstances seem to be identical in all important respects? Why do some patients relapse quickly while others have 20-year remissions even though their risk factors are similar?

There are theories out there in the myeloma medical community which may answer those questions, but they are only theories right now.

When it comes to divining the significance and impact of the benign secondary MGUS M-spike, the theories are based largely on correlations rather than provable scientific facts. And there is absolutely nothing I have seen or heard, other than the anecdotal experience of my oncologist, which speaks to what it means when the secondary MGUS M-spike begins to disappear.

If there is a lesson in all of this, it is to reinforce one of the fundamental things that we multiple myeloma sufferers and our friends and families all must learn: become comfortable with the unknown.

It is easy enough to say that, regardless of what life throws our way, we should do the best that we can with what we know and can control, and we shouldn’t sweat what is beyond our ability to affect.

Easy to say. Hard to do.

Many of you who are struggling with far more challenging physical and emotional impacts from multiple myeloma may ask why I cannot be grateful that I am, by all accounts, in complete remission and able to do most of what I want to do. The answer is that I am grateful – very grateful in fact.

But I am also greedy. Being superstitious, I hesitate to say it for fear of jinxing myself, but I want the current state of my health to continue. To continue next week, next month, next year, and for many years to come.

I say this knowing how unlikely that outcome is.

When I talk about multiple myeloma to people who know nothing about it, I tell them: “Everyone relapses.” That might not be technically true; there are people who are cured or who experience long remissions and eventually pass away from other causes. But it’s mostly true. Living with this reality – pushing through the uncertainty and continuing to breathe as deeply as possible – is the key for me to maximize the time that I have.