The C Word – A New Battle Day 6 - Line Dancing Moves

Today feels like a line dance of the cancer variety.  Two steps forward, shuffle to the right, one step back, one step forward, one step back and repeat. 

We got some really good zzzz’s last night.  The diahrrea finally started subsiding after 9:30PM.  Only two sleep interruptions some 3-4 hours apart and then straight back to bed for more sleep.  We both slept in – even me, which is unusual.  Normally by 5 or 6AM I have had enough.  Good to go for the day.  Not so today.  I stayed with my head under the pillows until Dr. Bastidas showed up at 6:30 this morning. 

We reported about our night and how George was reacting to medications, etc.  He took out the one drain left (JP) and covered the hole in gauze.  Checked out the suture lines and replaced the one bandage at the lower end that we had a nurse put there yesterday because it was a little red and we didn’t want it rubbing against clothing.  He gave the thumbs up for regular diet – any food goes.  (Of course, still being careful - - and George is not yet very hungry).  He talked about starting to switch over some of the medications and tube feedings but had not wanted to do that until George’s GI system was working better.  All good things.

We asked if he could give us a ballpark about our discharge date and he said perhaps by the weekend (of course, barring any unexpected hurdles).

First thing on George’s menu – Rice Krispies with sugar and milk.  He ate just a small bit which is fine – and drank all the milk – and that all appeared to settle okay. PT came in shortly after that and they took a walk halfway down the hall and back. Then, back to bed where he promptly fell asleep.

Our oncologist, Dr. Sheh popped in for what he said was a social visit. He has not yet been here – and pathology reports are not in yet, so he just wanted to see how George was doing.  We chatted a little bit about what he expects to see.  He said he doesn’t expect any surprises about a change in pathology from the last time to this time.  That being “low grade” tumors.  We know that low grade tumors have less choices available for treatment than higher grade (I am not sure why exactly this is).  He said he would start researching trials and studies to see what may be out there.  He also indicated that he would likely send tissue out for DNA testing because there is one “variety” of cancer (if it is genetically based) that responds to a specific treatment.  At any rate, a DNA test will show better what types of cells we are dealing with and will hone in on best treatment for that.  I told him that we were part of a couple of groups and saw discussions on some chemo treatments.  He asked if they were working.  I told him that a couple of them seemed to be going okay.  In most cases it added a couple of years on.  He thought that was good.  (That’s NOT what I thought.  I don’t like that at all!)

I napped for a short bit today myself this morning and then, because my mind kept spinning to the conversation with Dr. Sheh and I found myself weeping… actually on and off all day.  Trying to be strong for George – yet feeling like a cloud is hanging over my shoulder today.  Fortunately he has been sleeping all day today so I can pull myself together for the moments he is awake.  (He will read this later  - and it won’t be fun for him to read – but he knows that the “elephant is back in the room” anyway.) 

I tried to keep myself busy today but having a hard time concentrating and am still rather tired. 

This afternoon a laid down for a nap again.  After a bit George needed to go to the restroom again.  We went in there and as he got up to head back to the room I saw all this fluid on the floor.  At first I thought maybe he was still peeing but didn’t know it, but when I lifted his gown there was fluid spewing from the suture area.  It looked like a water faucet. I tried to pull the emergency rope in the bathroom to summon help but am not sure it is working.  Mind you, we had called for a nurse 20 minutes earlier because his IV line was beeping that it was done yet no nurse had yet responded to that either.  Finally I grabbed some paper towels and asked George to hold it against his belly while I rang them again.  I grabbed the call button on the bed and rang again and when nobody responded right away I ran to the hallway to try to get help.  One of the nursing assistants was walking by and I said, please come, I need help!  We finally managed to get the Charge nurse to come to the room and grab some towels and help him to the bed to lay down.  I directed George where to step so he wouldn’t step in the puddles of fluid near his feet.  (How I managed to do that I will never know – pure luck!)  The nurse held compression on the wound while we worked to clean up a little bit.  The nursing assistant tried to put a clean gown on George and we said, “forget the gown for now!”. I mean, really, let’s get our priorities straight here!  Jashley, the charge nurse, told our nurse that, for now we’ll just cover with gauze and tape up.  She instructed her to take his vitals and call Dr. Bastidas.  She did that and came in to let us know that he instructed them to find a rep or someone certified in the hospital to put on a clean vacuum bandage (like he had before that was taken off yesterday.  In the meantime, George is scared S***less about having to get up to use the restroom tonight for fear of it flowing like that again.  Especially since he has to use his abdominal area in order to get out of bed!

Currently George fell back to sleep on his bed, covered in blankets, as we await whatever the next step might be.  I am so grateful that the bathroom trips are not very frequent – otherwise this would be much more critical. 

5:15pm – the factory rep just arrived and will coach the nurse how to put the new vacuum therapy bandage on.  (She is not allowed to touch the patient.)  First they need to clean up what’s there as it is still oozing a whole lot.  This process could take up to an hour.

5:45pm – after seeing how much was oozing out of the belly, another call was made to Dr. Bastidas (who, we found out, is out of town for the night).  They are not going to put the vacuum bandage over the wound yet.  He has ordered NPO (nothing by mouth) for now (poor George, he was only just looking forward to a little bit of food, even if it was a glass of milk) – and now he can’t even have ice chips!!  They are going to put the gastric drain back in place and have turned off the tube feeding. For now, we are going to just keep changing out the bandages on his belly - - which are soaking up the wound stuff like a sponge so that will have to be done frequently.  They are ordering a lab tech to come and take a sample of the fluid.  She said something about finding out if a surgeon is on duty to come take a look – possibly put some sort of drain in, but not sure of that.  Dr. Bastidas will be back in town in the morning as well.  This situation is still rather fluid (in more ways than one as you see) so whatever I am being told now could very well change in 30 minutes. 

6:30pm – Nurse came in and took sample to send to lab.  Is putting in the gastric drain (which is a gravity drain that drains the stomach).  Then she will cover the wound.  I can see the one she just put on after she took the sample a short while ago and it is already saturated.  A CT scan has been ordered up so at 7 he is to get a bit of oral contrast, again at 8 and the scan will be done at 9. 

8:30pm – The nurse brought in the barium for George to drink and it was the same size as what he’s had for scans in the past…. Only thing is he has not had more than a ½ cup of fluid at any given time since he feels nauseas.  So nurse checked to see if it could be put through his J-tube feeder.  By the time she did that the 7 o’clock hour had passed.  Was closer to 8PM - - so everything is pushed back an hour from that.

In the meantime, a good buddy of his stopped in so they visited for a bit. 

So no updated news right now to give you and probably won’t have any news until morning about what is going on.   It’s going to be a long night of getting the nurses to change the dressing regularly. 

I will try to post a mid-day update tomorrow for those following this.  Prayers!!  Thank you!