Fellow myeloma patients: Is it ever possible to “forget” your disease?

If you’re having painful symptoms or side effects, or if treatment has turned your normal life upside down, I know the answer is a big, re­sound­ing "No." Myeloma is there every second of the day. But what about the times myeloma is smol­der­ing, in remission, or stabilized by drugs? Dur­ing these times, your every­day life is mostly “normal,” but can you ever really forget?

I usually can’t. Then, this past Christmas season, I suddenly quit thinking about it for big chunks of time.

It was weird.

Let me back up. A few years ago, a friend of mine – also a mom in her 30s – was diagnosed with a life-changing disease. We sat on a bench at a playground, watching our kids swing and slide, and compared notes.

“When do you stop thinking about it?” she asked, knowing it had been several years since my diagnosis. “When does it stop being the first thing you think about when you wake up in the morning?”

“Never,” I told her.  “You’ll never stop thinking about it, but – as weird as this sounds – you’ll actually get used to thinking about it.”

Eight years ago, when I was diagnosed, every thought of myeloma gave me a sick feeling in my stomach and turned me cold with fear. I spent hours on the computer, reading everything I could, scaring myself more and more with each Google search. I subscribed to several e-mail support groups, and I would read every word of them while my daughter napped, convinced that all of the horrible things that happened to the other members of the groups would happen to me, too. Even after I would finally get off the computer, I’d rehash everything I’d read over and over in my mind.

As years went by, I finally learned to quit reading so much about myeloma. I’ve learned to find some balance between keeping myself informed about the disease and scaring the living daylights out of myself with what could happen. I still have moments of panic and fear, but far less often.

These days, Revlimid ^[1] (lenalidomide) keeps my disease under complete control. I’m healthy and have no side effects from treatment, so my life is “normal.” My myeloma management has become routine, but there’s still a lot to organize.

I see the doctor or nurse practitioner and have blood drawn every four weeks. I sit down with the scheduler and make sure my next appointment is scheduled exactly four weeks later, so I can stay on my regular med­i­ca­tion schedule.

I make sure the mail-order pharmacy is shipping me my monthly supply of Revlimid and then receive “coun­seling” from a pharmacist. If the Revlimid is not shipping out on time, I need to call back and forth be­tween the doctor’s office and the pharmacy until everything is straightened out.

I call Celgene, the manufacturer of Revlimid, to take my monthly survey, and then I call the doctor’s office to get my test results.

I wait around the house for the FedEx guy to bring my drugs. Three weeks later, I do the whole thing again.

These days, everything follows an orderly pattern. It’s not painful; it’s just what I do now.

Still, myeloma constantly hovers over me like a ghost. What if my treatment quits working? What’s next? What if I get really sick? What will that be like? How long am I going to live? It seems like I’m always thinking about it.

And then this past Christmas season hit.

I turned this column in more than a week late. I never turn things in late! Never!

I got so busy shopping and baking and decorating and sending cards and volunteering at the third grade party and taking my daughter to The Nutcracker and moving the dang Elf on the Shelf around every night that I simply was too busy to think about myeloma.

That has never happened to me, but I have to confess that it felt great.

I hope it will happen again. I think it might be good for me.