Ten years ago, I was at my chiropractor seek­ing help for a chronic low back problem. I’d been seeing her for years with on again, off again back pain, presumably from work­ing as a nurse for many years. While her ad­just­ments were helpful for my back issue, I told her “I just don’t feel like running.” She thought that was strange, coming from me, a runner / jogger, former Ironman triathlete, and typically active and energetic person. So she ordered blood work (who knew chiropractors could do that?).

The result showed con­tinued anemia, which I had been diag­nosed with after having parvovirus in the fall, six months prior. My astute pri­mary care doctor saw these results, took a closer look, and told me over the phone, in a quick call, that she was referring me to the local hematologist-oncologist. I figured I was in trouble. More blood tests, a bone mar­row biopsy, and some x-rays followed. The results showed elevated pro­tein levels, an M-spike, and 18 per­cent plasma cells in my bone mar­row.

That’s when I became a Smolderer.

Fast for­ward 10 years, and here I am, at another juncture.

Hi, I’m Else and I have multiple myeloma. My bone mar­row biopsy in March showed 60 per­cent plasma cells, pushing me across the line to active multiple myeloma. I’m 54 years old and a mom, the sole parent of two amazing young men. I live on the edge of the Salish Sea in the beautiful, verdant Pacific Northwest, about 25 min­utes from the Canadian border.

I only very recently came out of the closet, so to speak, and told my chil­dren about my diag­nosis. After spending the last decade dropping in to read the Beacon's columnists from time to time, I have decided to be­come one. My goal is to share my ex­peri­ences (and lack thereof), connect with the myeloma com­munity, and perhaps help people who might be going through similar things.

I feel fortunate, so far, to not have any­thing worse than sky-high IgA levels, an M-spike, and anemia (along with all the things that go with these lab results). I suffer from low energy, and I get winded when I walk up hills. Some days are worse than others.

I’m grateful that I don’t have high-risk chromosomal ab­nor­mal­i­ties, and as much as the smol­der­ing myeloma diag­nosis has been a burden to carry around for 10 years, I’m grateful it was identified so early. I’ve had the luxury of time to educate myself and adjust my lifestyle to the best of my ability to do things that might de­crease the odds of progressing, such as maximizing rest, minimizing stress, avoiding in­fec­tion, cleaning up my diet, and staying active.

Have all these things con­trib­uted to my stay in the smol­der­ing category for 10 years? I’ll never know. And that’s the hardest thing. There are so many unknown. I’ve struggled with this for years, but even more so right now.

What is my PET scan going to show? What will those results mean? What hap­pens when I begin treat­ment? Are the side effects horrible? Will my quality of life take a nosedive? Will the rest of my life be filled with suffer­ing? How will I choreograph the care­givers needed to sup­port me through a stem cell trans­plant? Will I be able to main­tain my responsibilities, in­clud­ing running a household, parenting my teenager, fulfilling my volunteer obli­ga­tions, and con­trib­uting to my rela­tion­ship in a meaningful way? Will this dis­ease bankrupt me? Will I be a burden on my family and loved ones for the rest of my life? Will I feel as crappy about being a burden in the future as I do now? Will a chance encounter with COVID-19 cut my life shorter than it would have been? Exactly how vulnerable to in­fec­tion am I?

Some of these questions keep me up at night (I know, not so good when you need to get good sleep). Some of them are too overwhelming to face. Some of them I can’t even wrap my head around. And most of them are pure unknowns.

I suppose my next self-imposed chal­lenge is to learn some more coping mech­a­nisms to deal with all these unknowns, because there are so very many of them. I can imagine that some people can live comfortably with a future full of question marks. I suppose many people have learned how to grace­fully navigate their situations.

I suppose that, for now, the best I can do is some­thing my dear therapist taught me years ago, after losing my hus­band: hold my hand up 12 inches in front my face, palm facing to­ward me, and say “Right now, I’m going to be here.”

May we all go from strength to strength!