The C Word – A New Battle Day 8 - When Good News Is Not Especially Good News

Today was a rather slow day for the most part.  George spent the day sleeping – a lot.  He would nod off in the middle of short conversations.  Overnight they continued with the plasma and blood transfusions as well as a bunch of other things and I had hoped that this would, at the very least, make him a little more alert.  Instead I witnessed more of the same behavior.  Very sleepy.  Nodded off in the middle of conversations.  No energy.  I texted the doctor about this and said I was concerned and then asked “Should I be?”  He did not respond so later in the morning I sent another text letting him know that I would be away from the room from 12-2:30 and that I would like to have a conversation with him.

At noon, Keith came over to sit with George so I could run out and take a shower, feed the birds, water the plants, pay a couple of bills, do a quick load of laundry and yes, even just sit in a comfy chair for a short while.  Just after I finished my shower, Dr. B texted and said he was with George and I could call right then or he would touch base with me later, so I picked up the phone and called.  He put me on speaker so George could participate in the conversation.  He basically said that he noticed improvement over 36 hours ago, that George’s pulse was stronger at some of the pulse points and that his color looked okay.  He said that George can get up and move around at his own comfort level and I said, “then he probably won’t get up much at all”.  Doctor left one of the abdominal bands for George to wear when he is moving to help alleviate the fear that something will happen to the stitches.  Our night nurse, Akash, came in and said we are going to put the belt on and try for a short walk.  He is very encouraging!

I think he thought I was going to ask about a release date today but I was trying to find out when we would be trying to reintroduce foods again.  George has been on just TPN for 2 days with nothing by mouth or feeding tube.  He will be ordering another CT scan tomorrow to see where things are progressing.  He reiterated that while the scan the other day did not show a leakage he is convinced there is one.  He said that the area is draining still, but draining slowly.  The radiologist did not see a big enough pocket of fluid to warrant having a drain put in. 

We also got the pathology report back today.  And while it was not entirely new news to us as the surgeon has said that he believes it to still be “low grade”, what has changed is the aggressiveness of it.  So “low grade” no longer means “slow growing”.  That part of the pathology seems to have changed.  We do not really know what this all means in the way of treatment.  We do know that “low grade” tumors are not responsive, for the most part, to chemotherapy regiments.  I am trying to reach out to our fellow PMP community to find out some more information while we wait for George to heal and then start speaking with his oncologist. 

So when I say Good News is not really Good News – here’s what I mean.  Low Grade appendiceal cancers are not very treatable via anything other than HIPEC.  When HIPEC is no longer an option as in our case, some try to go the route of regular systemic chemo and maybe immunotherapy, but most of that has not proven to really work at slowing, let alone stopping the growth.  Had it been a higher grade type of cancer, those DO tend to respond to other treatments. 

Today the tubes were removed from his central line and placed in the PICC line on his left arm.  That should be more comfortable for him as the one on his neck kept pulling when he moved.  Less fluids are being pushed today which is good. 

We got a pretty good night’s sleep last night.  I used ½ an Ativan and slept SOOO good.  I woke up a few times and attended to George but went right back to sleep.  Thus I felt so much better today.  Hopefully we will both get a good night’s sleep as it looks like there will be only TPN going tonight and maybe antibiotics, but not much else. 

Tonight I have thanks for some of the wonderful nurses we have had:  Hardeep, Akash, and Amy to name a few, have all been really wonderful. Sometimes I don’t know who the graveyard shift is because the board where they write their names is behind my pull out bed so they are not able to write it. We’ve had some nice CNA’s as well – those people do a lot of the work and get none of the glory – emptying and measuring bodily fluids from all sorts of drains, cleaning up trash, and so on. Many of their names are hard to spell so I won’t list them – but I do appreciate them.