I remember it like it was yesterday. I was 13 years old, and sitting in my 7^th grade math class behind a popular girl with perfect hair. The lesson was on a topic that would have served me better in years to come, but I couldn’t hear it because I was distracted by the perfectly-feathered person sitting in front of me.

Why was this girl so popular? Was it her hair? Her cool, acid-washed jean jacket? Her perfectly scrunched leg warmers? I just didn’t get it. There was some­thing about her that made her an “insider.” And while I was a happy person with lots of friends, I simply wasn’t in that group. I was an “outsider.”

Now, I find myself on the outside again. But this time, I don’t mind at all.

It’s been nearly four and half years since my husband Daniel was diagnosed with smoldering myeloma. Since then, we have waited for the inevitable day when “watchful waiting” ends and active treatment begins. Since then, many have crossed our path who have been diagnosed and treated for various cancers, multiple myeloma included. While their trials and tribulations have played out before us, time seems to have stood still for Daniel’s myeloma (knocking on wood). Here we still wait, untreated, not yet in that circle of those who have tackled their cancerous Goliaths.

I’m not sure what I expected from the last four and a half years, but as a new caregiver, I was afraid that it involved facing the worst that multiple myeloma could offer. I remember reading those overall survival statistics five years ago, and they were very sobering, to say the least.

I thought that smoldering myeloma was a ticking time bomb, because let’s face it – many people do progress from smoldering myeloma to symptomatic myeloma quickly. In time, I became so afraid of Daniel’s “time to pro­gression” that I began to build up a terrible fear of the day when he’d need treatment.

But here we are, still ticking.

An article ^[1] from the Beacon in 2013 brought hope, “Results from recent studies indicate that the risk of pro­gression from smoldering to symptomatic myeloma is 10 percent per year for the first five years after a smol­der­ing myeloma patient's diagnosis. This risk reduces to 3 percent per year for the next five years, and to 1 percent per year thereafter.”

This fall will be Daniel’s “five-year anniversary” from his original smoldering myeloma diagnosis. Thankfully, he remains lesion free, with only mild anemia. His M-spike is higher than it was years ago, and his free light chains are as well.

This is my 32^nd column for the Beacon, and after nearly three years of caregiving columns and five years of support for my smoldering husband, I can say that my perspective has changed in unexpected ways.

I remember that a few years ago we were afraid to make plans very far out. Family would want us to book travel plans with them or commit to activities in advance, and we had a very hard time explaining how we just couldn’t let go of the apprehension we felt and do something so “hopeful” as to book a cruise a year in advance. Who knew where we would be in a year? It seemed like such a radical leap of faith to do such a thing when we didn’t even know what his next specialist visit held.

Something has happened since then, however, and we have begun to live again – not live like we used to in the carefree days before his diagnosis, but somewhere in between. We have learned to live “like us,” but with dual citizenship – somewhere between the myeloma world and the world of the untreated.

When Daniel was first diagnosed, we didn’t have enough data points to assume anything about how he would progress, but after so long, we and his specialist feel comfortable with monitoring his condition without treatment as long as certain markers remain in a tolerable range. She also believes that based upon his markers, he will need treatment, but not yet. We all agree that the longer you can healthily live your life with­out cancer drugs, the better. So it’s a balancing act, knowing when to hit the “go” button.

I won’t say that it allows us to breathe easy, for as anyone with a myeloma specialist knows, nothing is “easy” about walking into a cancer center.

We do go on big trips now, but we just quietly buy travel insurance without saying much about it – we both know why we’re buying it. The only difference between him then and now is that, if anything, we are closer to treatment than he ever has been before, but we aren’t there yet. And it feels good to be an outsider.

I find it ironic that I know many people who want to be on the “inside” of where they aren’t. Kids who just want to be grown up, teens who want to be popular or have the latest clothes or smartphones, adults who want to make more money, live in a bigger house, or have a wealthier lifestyle. Maybe it’s the human condition to want what you haven’t got. Maybe it’s normal to want to be in that place where you dreamed that you’d always be.

I don’t want Daniel to be an insider to the stem cell transplant club, or the bone lesion club, or the kidney failure club that awaits so many with multiple myeloma. And while Daniel’s free light chains bounce around and his M-spike climbs, I have never wanted to be a part of anything less than I do “the treated.”

For once in my life, I can tell you that being an “outsider” is where it’s at.