The Exception, Not the Rule (Day 42 part Deux)

Nearly 7 years ago, we were told by James’ first surgeon “that being cancer free or NED (no evidence of disease) was the exception and not the norm.” I have always thought my husband was extraordinary and exceptional and today he proved that being a run of the mill, ordinary patient is over rated! 😂  

I have always thought and continue to think my husband will ultimately be the exception. It’s just taking some time! 😉

Today has been one confusing day. But here is the man of the hour on day 42, infusion numero cuatro! 

Ok, so James’ CPK was 1000 and there was no change in his urinalysis from 2 weeks ago (which is different than what he told me 3 hours ago but that’s what I get for staying home) so they decided to forge ahead with treatment today and monitor him. YAY!! 

I’m sorry but the thought of his dosage being decreased or him being dropped from this trial sends me into a dither. Oy vey!! 

So here is the plan, signed, sealed and delivered

  • get blood work done in MN next week to see if there is any change in his numbers. Lord, let there be a DECREASE in the CPK! 
  • If he has any sign of pain (ie: lower back pain) he is to call and stop taking his chemo immediately. It is the side effect of the chemo that is causing these numbers to elevate but typically patients numbers decrease after a few weeks. 
  • Return in two weeks (end of cycle 2) for more labs and the lovely CT scan!! 

So updated prayer requests – sorry, I am high maintenance today. 

  1. Lower CPK numbers!! HUGE! Most important! 
  2. No back or other muscular pain
  3. Steady, regular heart beats and blood pressure
  4. A scan that shows NO growth
  5. Lower or sustained CA19 levels (not sure if this was checked today and James said the doctor did not mention)

Thanks mi familia for walking this walk with us! 💛

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