Hope Renewed

I’ll start with the punchline:  we got good news yesterday.

My last post was called “Tick, Tock, Tick” and I wrote about my “scanxiety” and anticipation of Alex’s post stem-cell transplant PET scan.

I figured if you read that post, you might be interested in the outcome.

Remission.

We looked at the scan in our oncologist’s office, and we compared it to the previous scan, taken before transplant.

The new scan was a thing of beauty.  All of the dark shadows were gone.

A “negative PET.”  I believe the adjective “excellent” was used.  I may have cried.

Remission.

I dared not hope.  It has been a year of disappointments.  I was prepared for more bad news.

I was trying to read the body language of our doctor and PA when they came in the room.  They asked how Alex’s recovery was going.  The doctor asked to see the stress ball Alex was fidgeting with (really?  I think the doctor was trying to build the suspense).  The doctor seemed to be smiling. The PA seemed to be smiling.  Maybe it’s good news?  Just get it over with.

“There is no sign of active disease.”

I find it more difficult to say the word, “remission,” than I thought I would.  My feelings are more complicated than I expected them to be.  Don’t get me wrong, I’m thrilled.  But I guess I’m also guarded.  There have been so many disappointments, and it’s been such a difficult year.

It’s almost like this feeling that if I say the word out loud, it will disappear.  This promise will vaporize before my very eyes.

I went looking for a quote about fear to help me explain my feelings.  I found some dialogue from a Will Smith film called “After Earth.”  I haven’t seen the movie, but I think this quote comes pretty close to describing my feelings:

“Fear is not real. The only place that fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present and may not ever exist. Danger is very real, but fear is a choice.”

To me, this means that I can’t choose fear.  Danger of relapse is real, and there is nothing I can do about that, but to live in fear of that possibility, that is a choice.

Instead, I choose to allow myself to bask in the glow of remission.  To savor the victory.

Alex returned to his group home today.  There were posters all over his bedroom wall, made by his roommates and caregivers.  They celebrated by going out to Alex’s favorite restaurant, and his caregiver texted me a photo of Alex with his “Welcome Home” cake.  Monday, I go back to teaching fourth grade.  I haven’t been at work since mid-October.   I appreciated the opportunity to focus on being Alex’s caregiver.  Now I’m looking forward to taking back some other aspects of my life.  I realize that our lives are not exactly what they were before, cancer changes things, but I’m ready to figure out the new normal.

Alex is at high risk for relapse.  There are four factors that are predictors of relapse in his particular cancer.  He scores “yes” on all four, and yes is bad.  He has a perfect score when you don’t want a perfect score.  He’ll have a maintenance chemo, a fairly new drug specifically for post-transplant, relapsed and refractory Hodgkin’s patients.  The purpose is to keep him in remission and not let that relapse happen.

This treatment should be less brutal than the ones that came before.  We should be able to somewhat integrate it into our lives, rather than the treatment totally dictating every aspect of our lives.  The treatment will continue for up to a year.  Alex will have another scan in six months.  Every clean scan brings us closer to getting to call his cancer “cured.”

We must choose to live in hope, to allow ourselves to enjoy the sweetness of this good news, and to choose not to live in fear.

Good news at last.