It’s a Tuesday evening, and I have the house all to myself.  I sit at my desk, with a generous pour of red wine, and Sara MacLachlan softly singing through the speakers. My hands are poised upon the keyboard, and I’m ready to type this month’s column.

Despite the inspiring ambience, my mind resists the usual flow of words.  I want to write something inspiring and uplifting.  But in my mind’s eye, I see numbers where the words should be.  They are large, pulsating, dig­i­tal white numbers in a dark mental void. They read 13:16:45. These are the exact hours, minutes, and seconds till my husband’s next ap­point­ment with his myeloma specialist.

This preoccupation of mine began about 72 hours ago, as it usually does.  Small stress cracks begin to appear in my carefully constructed walls of worry-free positivity that I erect between appointments.

I think about how it’s been almost two and half years since his diagnosis of smoldering myeloma. Will this be the visit when he becomes symptomatic?

I try to hide these counter-productive thoughts with encouraging articles about myeloma research and bright reminders about the steadiness of his numbers.  I prepare with an impressive flurry of caretaker’s efficiency, focusing on the details that must be attended to: the 24-hour urine jug, memorizing the appointment sched­ule, and planning the best departure times. We always go out for a celebratory dinner after his appoint­ments, so I think about which restaurant we’ll choose this time.

But, the truth is that it’s all smoke and mirrors, a self-induced subterfuge that isn’t fooling anyone. These are coping mechanisms, distractions, little behavioral responses to help me cope with the worry about what could change in 13 hours, 16 minutes, and 45 seconds.

I spend the majority of the time between appointments with family, friends, and the normal things of life, but time flies and soon the appointment reminders yank me out of my happy denial.  They begin with 7-day, then 3-day, then 1-day reminders of what is to come. Then it’s here: appointment day.

Don’t misunderstand me, I know how lucky we are to have such highly qualified specialists and I am thank­ful for their interventions, but it’s a bit of a double-edged sword for me.  We need their myeloma expertise and their life-prolonging medicines to be sure, but I also know that they’re the messengers of bad news.  With each visit, I just hope that we won’t receive any. Appointment day is complicated.

On appointment day, everyone seems to be in complete control, except for me.  I wonder if anyone can hear my heart beating out of my chest.  Can they imagine how anxious my stomach is, or how nauseated I am as I wait for the pathology reports?  Does the staff understand the anxiety that has built up over the last couple of days, or how hard it is to not cry out with relief when we get the good news that all is well for another two months?

My husband, the patient, sits there so solidly. He discusses his condition like it’s an engineer’s schematic, completely in control.  I can barely speak without my voice wavering.  I’m just working overtime trying to main­tain a supportive, calm caretaker’s visage.  I don’t want to show my anxiety or my fear. I want to be strong for my husband, just like he is for me.

What I wouldn’t pay for a caretaker’s guide to “rationalism and seemingly unaffected behavior!”  The last thing that we need is for the staff to think that I’m as crazy as a loon, and yet in the span of a few hours on appointment day, I think I must run through almost every feeling on the range of human emotions.

And then, we get the good news, he still smolders.  We are thankful and try to act like everything is normal. No release. Just swallow back all that suppressed emotion, and get on with it.  What’s there to release any­way?  Not tears! We got another hall pass.  We’re so fortunate!  How many other smoldering patients and their families didn’t get the same news that we received today?  We’re good for another two months.

Yes, appointment day is definitely complicated.

All this is normal, I expect, but it doesn’t ease the tensions that crop up every two months.  The reality is, more than likely one day we are going to go to my husband’s appointment, and we will learn that he isn’t smoldering anymore.  Will it be the end of the world?  No, it most certainly will not.

Like many others fighting this disease, he will join the ranks of those who harvest their stem cells, receive stem cell transplants, and begin side-effect laden combinations of drug therapies.  We will optimistically fight disease progression every step of the way, just as we do now.  But it will bring a new era for us, one of increased uncertainty and com­pli­ca­tion — and despite rational assurances that all people face uncertainty in life, it would seemingly invite the unknown in a significant way, which scares me.

We try to live our lives like we’re not waiting for the other shoe to drop, and I think we’re pretty successful at it. But the closer we get to appointment day, the harder it gets to live with multiple myeloma.

Everything could change in less than 13 hours, 16 minutes, and 45 seconds. Wish us luck.

Post appointment report: My husband’s disease remains stable.  He continues to smolder. Thankfully, all is well, and now the cycle begins again. We have two more months before the next appointment.