Now What?

 Well you didn't think it was going to be easy? You didn't think for a minute that I could get through a weekend without some drama, now did you?  Absolutely not!

About 4 or 5 days ago, Geoff and I noticed that "baggie" wassn't filling up as much as previously. We told drs, we told nurses, no one seemed to take notice.  On Thursday afternoon, we realized nothing was flowing from the tube except maybe some air -- not good.  Friday morning, same thing.  Decided to flush it and see if it was blocked.  When G plunged the tube, I felt the liquid on my chest -- really, really not good.  The phone calls started.

The visiting nurse wasn't due until 11:30 and the Cape Cod Crowd was coming for lunch at around 12:30.  I decided to take a shower and try to look presentable.  In all the moving about, I noticed that the tube was now flowing again.  Oh good, maybe we dodged a bullet - ha!  Nicole showed up and we updated her on the situation.  She removed the bandage covering the tube enterance into the chest and flushed again.  Yup, I had sprung a leak!  But since we all saw that the drainage was still going, perhaps it just needed to be put back up a bit farther in the duct.  It was obvious that the tube had migrated south.  Thank goodness Nicole was there - she talked to the dr's office, then the hospital, and eventually to IR directly (Interventioinal Radiology - the folks who put the tube in).  Ok sounds like it's about a 10 minute procedure.  We can squeeze you in this afternoon - unless you think you want sedation - then we may not be able to gather a whole crew.  "No sedation.  Just put a stick in my mouth!"  Ha, ha, fine. The scheduler will call you in a while with  a time.  Phew! 

Nicole left and Mary, JohnDavid and Sadie showed up.  It was good to see the humans, but I did miss me some puppy love.  Sadie is always happy to be here and she lets you know.  We were sitting around chatting waiting for Steve and Sam -they had the food, when the scheduler called.  "Can you get here at 2? You will probably have to wait, but at least you'll be here."  Fine.  Steve showed up a bit after 1 and it was a race to get the latkes reheated and the soup warmed.  Sat around the dining table, had a few latkes, and we were off - leaving our company with the clean-up.  They said they would hang around since the procedure wasn't going to take too long.

Arrived at IR at exactly 2pm.  I was called in at 2:45.  Saw my buddy in CT - he almost didn't recognize me withour my johnny.  I get wheeled into IR and I am very nervous on all kinds of levels. I tend to talk a lot when I'm nervous --- or let's just say talk more. "Please put your arm above your head and don't move" The nurse was putting this very fancy drape over me with a big plastic window, when I was trying to explain to her that I was getting pressure from right there - tapping on the plastic window. Well, if looks could kill.  "We're goig to need another DRAPE and new gloves"  Ooops. She was not happy.  "Ma'am please stay still".  "Well that's what happens when you don't sedate people, especailly Jewish people - sorry"  Now, I'm a statue but my mouth keeps going.  The doctor comes in and sits down to do this 10 minute procedure and all I hear are moans and groans.  "It's totally disconnected - completely out".  "What does that mean?  Can you get it back in?  Whap happens now?"  The doc pulls the drape down from my face " I NEED to think!"  Ok, I can take a hint. I immediately shutup.  Which is not one of my biggest assests.  There are more images taken, more phone calls.  

Finally, he tells me that if the tube actually does need to be reinserted then it is a bigger procedure with sedation.  Maybe they can schedule something on Monday.  But the port is going in on Tues, chemo on Weds.  Well it all may have to be shuffled around - AGAIN!!  That's when I started to cry.  I never envisioned mysself begging for chemo - but if I don't get treatment soon, these tumors are only going to get bigger and that just scares the crap out of me. He pulls out the useless tube. Bye, Bye, Baggie. But wait, if the tube was out, what was draining into the bag?  Not sure, but it wasn't bile. ???? I'm wheeled back out into the hall.  I change and they bring Geoff in to get him up to date.  Doc comes out and explains that the bile ducts have practically closed up and there is no way they can get a tube back in there until they are dialated again. He doubts that will even be by Monday.  The last bilirubin test was 3.1.  Can they start chemo with that number? He consulted the oncologist, and as of now, I am on tract to still have the port installed on Tues and treatment start on Wed.  Of course, if between then and now I start having fevers and/ore pain call the oncologist and it'll probably be back to the ER. You have no idea how many scenarios have built up in my head.  There are so many variables and so many unknowns. It is all so confusing.  Please, no questions about all this because I don't have any answers. So I have resigned myself to try as hard as I can to the "one day at a time" rule.  There is one really bright side - for now, I'm bagless and fancy free!  Tube holiday they call it.

We finally got home at around 4:30.  The gang was still there but looked like they were headed out.  As soon as we pulled up everyone turned around and got comfortable to hear the latest news. I was so glad they stayed.  Plus they did a great job cleaning up.   I finally kicked everyone out at around 6.  It had been a long day.  We had a small dinner of black beans and rice. I went upstairs to sit on the couch and watch some tv and immediately fell asleep.

It's another afternoon of company, which I am looking forward to.  It's snowing again.  It always looks so pretty over the bay.  

Love you all.  Take care of each other -s