One of the first things you learn with a multiple myeloma diagnosis is that your life as you knew it is irrevocably changed.

That’s true, I suppose, with any cancer, but it’s especially so for a disease that falls into that vague “not curable but treatable” category.

I see that phrase constantly these days in newspaper and web articles about myeloma, and I find some pretty dark humor in it. It makes it sound as if myeloma is just something annoying that you have to put up with. After all, it’s treatable.

Meanwhile, I constantly receive email alerts for news stories about myeloma, including articles about people who have passed away from the disease, a surprising number of whom having been diagnosed after I was.

Speaking of newspapers, I usually start my day off reading several, including three in actual newsprint versions that are delivered to my door. This doesn’t include, of course, those mornings after I’ve taken dexamethasone. Then, I’m usually up around 2 a.m., long before the first paper gets delivered.

One recent morning, I read an article written by a breast cancer survivor, Katherine Russell Rich, in The New York Times. It was entitled, 17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived ^[1]. In this article, Katherine, who has far outlived her initial, dire prognosis, reflected on her feelings when she was told she only had a year or two. She wrote, “All I wanted was my ordinary life back, for ordinary life, it became utterly clear, is more valuable than anything else.”

I stared at her words and asked myself, how many times have I said that (or something like it)?

Mostly, since I was diagnosed with multiple myeloma four years ago, I’ve put it this way: “I just want my old, carefree life back.”

Of course, that can never be. You can never get it back.

I don’t say that so much as a lament, even though it is, but more as missing something that’s gone forever. That ordinary life is never coming back, and I really miss it. I think everyone facing a “not curable but treatable” illness probably feels the same way.

The best I can say is that it’s been replaced by periods of time with some semblance of normalcy.

For those of us with myeloma, life requires constant vigilance, always watching the frequent test results to see if your disease decides to take a turn for the worse. It’s a disease of treatments, remissions, relapses, more treatments, and so on, until the disease reaches the point where it’s stronger than anything left in the arsenal to combat it.

However, there can be extended periods of what’s called “progression-free survival,” where myeloma cells have been knocked back, and stay back for a while, sometimes for many months or even years. That’s about as ordinary a time as you get with this disease.

Having said all that, even though it’s the reality myeloma patients face, I need to emphasize that it all sounds bleaker than it really is.

Lance Armstrong once commented that he saw his cancer as “a gift,” and when you get a myeloma diagnosis, you understand what he means by that pretty quickly.

With myeloma, as with any cancer, the struggle to survive can be hard, and obstacles tend to pop up in the way when you least expect them. But when you are engaged against an adversary that’s certain to limit your remaining life expectancy, your appreciation of life, and your own life, grows.

After my second stem cell transplant when I achieved a complete response, I would tell my friends, “You know, I’m still the same old me. But I’m not the same. I’m different.”

Mostly, they gave me odd looks. Politely, mind you. But looks that, nonetheless, said they wondered if all of those treatments had affected my brain.

It’s about perspective, I think. I know this sounds awfully corny, and I wouldn’t blame anyone for scoffing, but every day I wake up, I know that if I face anything short of a life-changing catastrophe, it means it’s going to be a good day. I’ve already had one life-altering catastrophe.

When faced with a myeloma diagnosis, there’s a decision each person needs to make, and it’s less about treatment than it is about who, or what, is going to be in control – you or the disease.

In my case, after my diagnosis, I chose to try to continue with routine life as best I could. I kept working, uninterrupted except for a couple of months off for two stem cell transplants and one unplanned extended hospital admission. I tucked chemo sessions into the workday as unobtrusively as possible. I even managed to catch those all-too-common post-transplant infections and pneumonias requiring a couple of days in the hospital on major holidays. Well, I didn’t plan it that way, but that’s how it worked out. It became a joke at my local oncologist’s office: If there’s a holiday coming, reserve a hospital room for Mr. Ganim.

There’s a lot of down time in the chemo waiting room at Sloan-Kettering, and I’d make the best of that by chatting with the other patients. Most people in the waiting rooms can be withdrawn and absorbed in their own problems, I’ve found. It’s hard for our own disease not to be the focus, simply because of the environment. Almost everyone, though, warms up when you talk to them, or, rather, when you listen to them and give them a chance to tell their story. On a certain level, we all want to talk about what we’re going through, but we also recognize that most people don’t want all the gory details. I wanted to hear what they had to say.

From those many stories, it’s clear that I am not unique, neither in my will to push on, nor in my regret that my old, carefree life is a thing of the past. Most folks seem to take in stride the swath that cancer cuts in your life’s circumstances, and they are determined not to let it change their outlook, no matter what prognosis they face. For some, that’s not always easy, I’ve learned.

After my diagnosis and throughout my treatment, I concealed my cancer from all but family members (and my employer) for more than a year and a half. To this day, I think there are people with whom I work who have no idea what I’ve been through.

This resulted in some interesting interactions. Treatments turned my hair white, prompting a colleague to drop by my office one day to remark about what he took to be my decision to stop coloring my hair. Trying to hide my amusement, I let him continue to think he was on to something.

I withheld my condition from people for selfish reasons – I didn’t want or need sympathy, and I didn’t want to spend time during the intensive course of treatment explaining how I felt, or having people wonder how I was doing.

I’m certain some of my friends are bothered by the fact that I excluded them. Truth is, though, I excluded just about everyone. Bothered or not, everyone has since been so incredibly supportive, which has been uplifting. Nobody’s given me strokes in golf, though, as much as I need them after my transplants. Golfers are tough.

My desire was to continue with as ordinary a life as I could, knowing full well that there was nothing ordinary about my life any longer. Nor would there ever be.