Oh What a Day!

 I've been up since midnight. I've warmed up some almond milk and honey and turned on the fireplace. It is now close to 4am still no sleep so I thought I would write.  So much for gummies - but more on that later.  This is going to be a long one, so settle in.

Yesterday was quite the day.  I'll start with the numbers - not bad but not great.  The bilirubin is going down but taking it's sweet time about it.  I've done a lot of thinking on this pump - formerly known as the "bottle".  Here's my theory and I think it's a good one.  If the # was <1, then the liver would be healthy enough to take a direct infusion of chemo from the IV going into the port at one sitting.  Since my # is 3.1 - which is better but nowhere close, they attach a pump to slowly release the chemo over a 48 hr period. Thus a bit less severe than the one sitting.  Anyway, that's what I came up with sometime after 1am.

Moving on.... Geoff cleared the driveway, came into to thaw for a while and we took off for the clinic.  First up was the blood test. Then our nurse came in to show us what the port looks like and how it will look on my body.  Nothing about the care and feeding of the device.  There was a lot of discussion as to when and where this procedure was going to happen.  We were told to arrive at 6:30am for an 8am procedure at St. Luke's in New Bedford on Monday.  YAY!! Close and early. I will start treatment on Tuesday. Before we left Jen, the nurse, asked us to come back tomorrow (today) at 11 for chemo training.  Chemo training?  Really?

Left there and headed down the street to the pot shop.  Turns out you can't get straight CBN and everything in the shop has some level of THC.  I really did not want any THC - I just wanted to sleep.  The guy suggested we try a smoke shop or even a gas station or liquor store.  My, how times have changed.  "Do you know of a smoke shop"  "Uh maybe in Dartmouth?"  Before we went out on a wild goose chase, we decided to go home.  I'll do research on the matter and Geoff went to the grocery store -- with the car!  Turns out there is a smoke  shop right down the street from where the pot shop is -Duh! Called Geoff - he popped in and came home with some CBN/CBD gummies.  Guaranteed to put me to sleep.

And then the phone started ringing.  First call was the hospital scheduler telling me my app't is on Tues at 8am at Charlton Hospital in Fall River.  Not that far but certainly not as convenient as New Bedford. "Nope I was told 8am at Stl Luke's"  This went round and round for a bit before we both decided to hang up and she will get back to me when it all got sorted out.  Fine.  In the interim, I got a call from the nurse saying Oops our bad.  The scheduler called back and we confirmed everything for Tuesday and treatment will start on Wed. Just when I thought the call was through, she starts telling me about the care and feeding of the port.  They will put a very, very tight bandage on it -- that she understands to be very uncomfortable around the neck area.  Of course it's uncomfortable.  Who would've thought any different - why should they make anything comfortable for the poor patient.  But there was this issue with the bandage being on for 7 days - what about the pump?  Showering?   "Oh you'll have to cover it with plastic".  I'm already covering the tube entrance into my chest with plastic.  Might as well bubble wrap me or just do the armpit swipe.  Ah, but I still have hair!! So bubble wrap it is. I still wasn't getting the 7 day thing - is that with or without the pump days. Then, in her sternest voice "the bandage comes off Feb 27 at which time feel free to shower without cover"  She couldn't just lead with that?

Next up, my good friend Suzie called.  She had recently returned from Tanzania and wanted to share her experience.  It was great talking to her until call waiting chimed in and I said gotta go it's the dr's office or hospital again.  "We need you to come in and sign some papers and a copy of your ID.  HUH?  Can't I sign them when I get there on Tuesday.  "Well I can send them via email or the portal"  "But you have my insurance card on file"  "We need your photo ID this year"  This year?  "What are the forms?" "New stuff about Cybercurrency"  Cybercurrency???  Then it dawned on me.  This wasn't the hospital at all.  It was our tax accountant!!  "Geoff will be there tomorrow with everything you need."  Jeez, anothere 50 minutes out of my life.  Does everyone have a portal these days?

Ah, but the fun didn't stop there. This tube that is in my chest has to be flushed 1x day.  The hospital gave us some prefilled saline flush syringes when we left but we need more.  The visiting nurse said he put in an order for a box. Great!  It's been over a week or so and still no box.  Geoff called the case manager at the VNA and was told BCBS doesn't cover it.  Try just refilling the syringes with saline water. If I hadn't just been through a series of infections and dealing with bacteria, I may be more open to the suggestion.  As it is, NO WAY in HELL I'm reusing anything going into my body.  We went online to see what was available.  If you weren't a doctor, these things run into the hundreds of dollars a box.  Not that we can't afford it or that I am not worth it, but the principle of the thing. This is an intregal part of my care and maybe for a very long time.  Someone has to call Blue Cross.  I made the call and fortunately got a very patient understanding woman who was going to get to the bottom of this.  She tried to contact the case manager at VNA with no luck.  BCBS is all about the "code".  "Do you know the code, did you get the code, did you see a code, etc, etc"  No, no, no, etc, etc.  Well, this gal was like a dog with a bone.  She was determined to come up with a code -- and she did!  Now for the tricky part. It needs authorization - do you want it to go to the VNA or your PCP?  HUH? Round and round that conversation went until we chose PCP figuring in the long run it might be better.  If there is a fee it will only be 20% of the cost -- much more better.  Of course, this will take at least 2 weeks to get approved. And, I still have to find out what code the VNA used - I may still be able to get it through them as well.  I think, I'm not sure.  At this point, I was ready to blow my brains out!! The nice woman from Blue Cross will call back on Monday with updates.  Finally hung  up the phone and it mercifully stopped ringing.  

We got home from the clinic at around 11am it was now 5:30pm. I was physically and emotionally drained.  However, the best was yet to come.  It was still Valentine's Day.

Exercise and good eating - ha!  A lot of good that did me.  We haven't eaten red meat in a long time. Might've cheated here and there on vacation but certainly NEVER cooked a slab of beef in years.  Last week I started hinting about tasting a steak before I lose my apetite altogether.  So before you could say filet mignon, the broiler was aflame and I thought it was curtains for the kitchen.  Geoff cooked a very small, lean, tender filet which we split with baked potato and broccolini.  Sat down to a candlit dinner, listening to music, looking at the bay. Even got the ok from the doc to have a small glass of red wine. Not a finer restaurant in town.  The dinner was perfection!  Which he topped off with a card and a small box of chocolates. I'm not supposed to have sweets but I did have one delicious hazelnut choclate, one of my favorites. It was wonderful - we talked, we laughed, I cried.  A month or so ago, we would've gone upstairs to end the evening properly -- instead we watched the Celtics smash the Nets beating them by 50 points!

I do think I'm back to no meat.  It was very good but a little goes a long way.  I am so very grateful to the chef because I know he did it for me.

Back to where we started, the gummies.  I took the gummy at around 9:30.  Fell asleep and was wide awake at midnight.  Not only could I not get back to sleep but I was having slight palputations.  I guess it's back to the anti-anxiety pills.

Today, we should be on our way to LA for a stopover before heading to OZ.  Instead, we're off to chemo training at 11 - then I figure I'll come home and sleep the rest of the day.  Still can't wrap my head around it all.  

Today also marks 19 years we have been in this house.  Just two small rooms left to paint and then I declare it done!  I told G I would help but now I'm not so sure.  So anyone who might be interested in helping don't hesitate to write. 

The milk is finished and so is this tome.

Love you all.  Take care of each other -s