What is usual?

Chris's oncologist asked us today to describe how Chris usually feels. Typical of Chris, he replied "Mostly fine."  Onco then looked to me. I said "there is no 'usual.'

Every day is different and yet we are finding patterns.

On Saturday, Chris woke up, said he felt good, and proceeded into the kitchen to fix a suddenly dead garbage disposal, just like he alway has fixed stuff around the house.  Later, he went shopping and then managed to hang out with friends until late in the evening.

Today, he was so breathless when trying to stand and walk 20 paces from a lab room to an exam room that the nurses grabbed a wheelchair for transport.  This wasn't the first time he has needed extra help.

There is no usual.

 A couple of weeks ago, I invited a friend to dinner but had to text her a half hour before to say that we were headed to the ER because of a sudden fever.  On the other hand, ER visits are now so common to us that I was able to get Chris settled, knowing he was going to safely stay the night, and made it back home in time for a late meal with her.

We go in for transfusions about every 2 days.  Peoples' whole blood and platelets are poured into Chris so frequently that we confidently tell nurses his preferences for pre-meds, have a routine for me delivering him meals while he's there, and typically keep up a texting commentary on how all is going.  It has become our "usual" to take others' blood and to work with the staff.

But it's not normal.  None of this feels normal.