Tick, Tock, Tick

Years ago, I bought Alex a battery operated wall clock for his room.  One night when he was having trouble sleeping, I was in his room with him, trying to calm him and sooth him back to sleep.  I heard the tick, tock, tick of that clock.  I couldn't believe how loud it seemed when the house was so still.

Not a great room accent for someone with hyper-sensitive hearing.

Years earlier, we had realized that he was waking at 2 am due to the sound of the water softener in the basement, two floors below his bedroom.  It was purposely set to regenerate at 2 am to not bother anyone in the household and to not interrupt water usage.  What it did interrupt was Alex's sleep.  We reset it to regenerate at midnight.  At midnight, he was in a deep enough sleep to not be awakened by the sound.  By two am, it was a different story.

I took the clock off the wall.  Perhaps it was that tick, tock, tick that was interrupting his sleep.

I can hear that sound in my head, the incessant ticking of that clock.

It's also the sound of waiting.  Alex's scan is a week away.  His sixth, sedated PET scan in the past year.  This scan will tell us if he's in remission.  It will tell us if the stem cell transplant worked.

I promised myself I wouldn't dwell on that scan, or on thinking about the "what ifs" during the three weeks at home between the transplant and the scan.

I'm actually doing fairly well, but the thought is never too far from my mind.

"Scanxiety" is what cancer patients call it.  Living from one scan to the next, always worrying what news it will bring.

The first scan revealed a mass over his airway that threatened to cut off his air supply completely; an imminently life-threatening mass.

Subsequent scans showed improvement, but always something left behind.

When we went in for the scan in August, the one after twelve cycles of chemo were completed, we were confident.  I remember telling the techs we'd see them again in six months.  I remember being sure we would get positive results.

Instead, there were still two active nodes within that initial large area.  There was also a new node in his neck that lit up.

Instead of remission, Alex had another surgery, more chemo (two new types, each more aggressive than the last), and a stem cell transplant.

His recovery from the transplant is nothing short of amazing.  He battles fatigue, but that's about it. His anxiety is more of a concern some days than others.  He lost all of his hair - facial hair, whiskers, body hair, eyelashes and eyebrows.  That caused discomfort and anxiety.  It was all just starting to come back and in one day it all went away again.

I try to gauge how he's feeling, not just physically but mentally and emotionally, day by day.  We're starting to get out a bit.  The Wisconsin January weather has made that difficult, and his immune system is still compromised so we have to be careful.  We've been mall walking, and he's been doing well.  Yesterday, we walked in to the mall and he had a big smile on his face.  But in short order, it was clearly too much for him.  We abandoned the plan and went back home.

He may not have the language to tell me how he's doing, but he certainly has his ways.

The scan is in six days.  We see his oncologist that same day.  In the past, we had the scans done nearer to our home, and results took several days to a week.  This time, we'll travel to Milwaukee where the lymphoma specialist has direct and immediate access to the digital images.  He said he'll give us preliminary results that same day.  We won't have the radiologist report, but the oncologist and his PA are confident they can interpret what they need to directly from the images.

We're hoping for one word:  remission.  I'm afraid to get my hopes up.  We've been disappointed time and again this past year.

That clock keeps ticking, resounding in my head.