The Real Waiting Begins

My wife, daughter, and I are reading “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.” We are doing so to facilitate a discussion about our respective roles as patient and caregivers as well as equip us with new tools and perspectives for how to deal with the situation in which we find ourselves.

As I read the book, there is much to unpack and think about. I draw comfort from reading about the author’s similar experiences and emotional reactions. In particular, I was struck by her simply yet plaintive expression of pain and frustration that waiting can engender. Indeed, as the author notes, the cancer journey is filled with waiting periods, whether it be for a specific test, the results of that test, the follow up appointment with various specialists to discuss the test results, etc.

When people ask me how I’m doing, I tell them that the BIG WAIT has started. While the second transplant appears to be successful, we don’t know whether the chemo prior to the transplant or any of the Graft vs Host Disease (GVHD) attacks eradicated the cancer cells. All we can do now is wait and see whether the cancer recurs like it did after the first transplant.

The odds of recurrence are not in my favour. On the order of 2/3rds of second transplant patients will suffer a relapse within two years of the transplant.

Despite the odds, I feel cautiously optimistic. I am recovering slowly but steadily from my various hospital stays including a precipitous weight loss (I bottomed out at 125 lbs). Good news is my appetite is voracious. Tracy makes sure that there is always something available to eat that will appeal to me.

I still tire easily and weight gain seems glacially slow some weeks. The steroids weakened many of muscles so physical activity is needed to rebuild these muscles.

Thanks for listening

Mike