Living with multiple myeloma isn’t easy for a number of reasons.  Besides having cancer and dealing with the uncertainty around it, there are hours spent in waiting rooms, along with countless blood draws, tests, and chemotherapy side effects.

But for me, the most difficult part of our new normal is “the switch.”

One minute everything seems fine.  Then without warning, someone or something “flips the switch.”  Suddenly we’re in pain, battling an infection, hospitalized, or standing nose-to-nose with our own mortality.  And it happens all the time.

Let’s stick with the analogy that there are a series of light switches controlling much of our lives since being diagnosed with myeloma.  Like lighting in our home, there are different types of switches, and different kinds of lighting.

First, there’s the mood lighting controlled by a sophisticated dimmer switch.  For instance, sometimes I’m sore or feel a sharp cramp or twinge of pain—a subtle reminder that I have bone marrow cancer.   I may have trouble sleeping because the dexamethasone ^[1] (Decadron) I’m taking is keeping me up.  Or it can be the sharp poke I feel as my oncology nurse starts an IV.  By taking pain medication or adjusting the time of day when I take my dexamethasone, I can reach over and dim the light, but I can’t control the on/off part of the switch.

Then every month or so come the flood lights.  Light so bright it blinds you.  Stunned, you reach for the dimmer switch.  But that switch doesn’t control this type of bright, piercing light.  Instead, the switch is operated by your oncologist or myeloma specialist when they deliver the big news about your disease to you.

It happened to me again during my latest appointment with my myeloma specialist.

“Pat, your M-spike is back,” she said.  “A measurable 0.2 this month.”

FLASH!!!  I sat there, blinded and confused.

“But doctor!” I stammered, “10 weeks ago I was in remission, and my M-spike was zero.  You said last month’s bone marrow biopsy didn‘t find any myeloma cells…”

See how that works?  FLASH!!!  Your life has changed in an instant.

Even though the news may not always be bad or may even be good sometimes, you feel the heat and glare of the lights for hours, days, or even weeks before your appointment because you worry about what the results will be.

One minute everything is OK.  The next it’s not.  Everyone experiences this type of thing from time to time.  But this type of on-again, off-again switch of the lights becomes a permanent reality for a myeloma survivor.

Allow me to mix my analogies.  Like soap opera fans watching actors lying in each other’s arms, pledging their eternal love and reminding the audience how perfect their lives are, an experienced myeloma survivor knows what’s coming.

FLASH!!  An outraged husband hits the light switch and washes away the cheating couple’s euphoria with a flood of light.

Yesterday was a good day.  Tomorrow may be OK, too.  But when we were diagnosed, someone flipped a switch for the first time.  And our lives will never be the same.

For those concerned about my latest results, don’t worry yet.  We won’t know how big of a deal the M-spike is for another few months.

The concern, of course, is the short duration of this latest remission.  The hope is that it is an anomaly and doesn't signify an exponential shortening of the time between relapses.

In a proactive move, my myeloma specialist decided to change my treatment protocol from maintenance doses of Revlimid ^[2] (lenalidomide) and Velcade ^[3] (bortezomib) back to full-dose Revlimid-Velcade-dexamethasone.  She suggested starting dexamethasone again and increasing the frequency of my subcutaneous Velcade from four weeks on and four weeks off back to four weeks on and two weeks off.

She will re-test later this month.

Feel good and keep smiling!