Andrew had a bone marrow biopsy last week.  His oncologists were seeing some upward movement of his white count and some slight downward trend in his platelets, and it had been a while since they had taken a peek at his bone marrow. So it was time—and it is never fun for Andrew.  He was the usual trooper (though he squeezed my hand pretty tight during the procedure!), and then we went about our business.  I hadn't started really thinking about possible results until today when I realized he was going straight from the airport (30 miles away) from a business trip to his follow-up appointment—and I couldn't be there. 

To be honest, I had to talk myself down from an impending panic attack that was threatening to rear its ugly head as I walked home from some errands.  For all the many years of watch and wait/worry, clinical trials, umpteen blood tests and bone marrow biopsies that I have simply "rode shotgun" on with Andrew, I still worry. Really, really worry—about how I will cope with a not-so-great report, a call for more treatment, an indication that a disease transformation is happening…any lousy news.  I worry more about how I will react and keep it in the road more than I worry about Andrew's ability to cope and more than whether there will be new treatments that will continue to keep him vibrant and happy.  It is so very important to me that I be a strong and optimistic partner—and that is the root of my panic.  Andrew has always proven to be levelheaded, a positive thinker, and it is his nature to approach curveballs with pragmatism.  I am quite sure that he thinks about the possible not-so great next news—but he doesn't panic like I do.  He is my strongman in so many ways.

I have adopted some techniques to quell the panic demons…breathing deeply, long walks, playing out worst-case scenarios in my head. But until I have actual news—good or bad—I stay in a state of contained emotional limbo.  It truly sucks.  The panic is kept in a sealed box, but my fear keeps knocking on the box top.

In the end, the news was good this time.  There has been some regression of bone marrow scarring from Andrew's MPN—the ruxolitinib (Jakafi) he is on seems to be working better than we could have imagined.  I am elated…and calm. 

Why am I sharing this? Because I sometimes feel that since Andrew and I are always "out there" with the work we do with Patient Power—that we work hard to empower others to get educated, advocate, think optimistically—that others might think we don't go through the same experiences and emotions…that somehow we have a secret formula for coping.  We don't.  We need our community of caring just as much as everyone else.  In truth, through the process of bringing information to others we are constantly reminded that at the vanguard of cancer research is a ton of hope for prolonged life, and a better quality of life.  If we all get lucky, there will be cures—or at least a very effective way to keep this stupid disease in a back drawer somewhere. We sometimes need a pep talk too, and we are both forever grateful for those who have delivered them over the years to pull us through. 

It really does take a village.

Esther Schorr
COO, Patient Power, LLC