Accepting the Unknowns

Operator Error

Oops... I miscounted.  The 100 days of isolation ends on June 28th, same day as my son Ben's birthday, so it should be easy to remember.  Recalculating everything, using my Countdown widget, there are 54 days, 16 hours, 26 minutes and 46 seconds left. At least there were a few minutes ago. Almost to the halfway point.

 

Unfortunately, there is nothing magic about the 100 days, it is just considered the minimum amount of time that one needs to take unusual precautions to avoid infections and that Pam needs someone with her 24/7. 

 

Stubborn Love

I am going to make a bold statement that will come as a surprise to exactly no one: Pam's Mom, Bonnie Eidem, is a stubborn person and she insists on doing too much. I have talked to her several times about taking it easy.  I have told her that I am perfectly capable of doing laundry, cleaning and cooking when I have time on the weekends and I told her that I am concerned about screwing up a good thing. The last thing we need now is for Bonnie to get sick herself, we are depending on her.  She politely listens to me, and just as politely tells me that my pleas for her to do less are futile.  I think she said "Just give it up, Jerry" or something like that..

 

The Unknown Unknowns

I think the toughest part of this for Bonnie is Accepting the Unknowns.  It really troubles her when no one can explain exactly why, at various times, Pam is nauseated, shakey, fatigued, or unable to eat. In her mind, there should be a definitive answer.  I keep trying to explain that there are simply too many variables:

• Pam is on a lot of medications with a lot of different side effects
• The medications and the dosages of the medications change all of the time. For example, the Prednisone dosage is being tapered, so some increase in fatigue is not surprising
• Her blood counts are still far from normal. She still gets anemic.
• She has drug induced diabetes
• Her immune system is still going through a lot of changes.  Two different umbilical cord stem cell grafts are still fighting it out for supremacy.  There is an immune system war going on.
• There is probably still some graft vs. host disease going on in her gut, and some of that is to be expected.
• Other Unknown Unknowns that I don't understand
• Other Unknown Unknowns that super smart, very highly educated, board certified, world class cancer academics and experts like Dr. Holtan don't understand

Bonnie is a smart cookie, and she understands about all of the unknowns, but that doesn't really help.  After we have a talk about all of this, and I go through my standard diatribe that we just have to accept that these symptoms are part of the process, and that we may never know the exact reason for some of the symptoms, and that some of the symptoms may have multiple causes, and that we need to trust the care she is receiving, she will pause and say something like "But I still don't understand why she is so shaky..."  My pleas to Accept the Unknowns are not working.  Bonnie will continue to ask questions for which there are no definitive answers. And that's OK. She is entitled. And, we are still grateful.