Back in the Hospital - AGAN!!

 But first, before I forget, one of the sweetest things about St. Luke's is that every time a baby is born, they play ice cream truck music all over the hospital.  I think it's pretty cool.

Getting back to the matter at hand, getting ready for Tues morning's visit was quite strenuous.  I was literately like a rag doll.  Having not one but two episodes the night before.  Geoff walked me into the shower and basically helped me up while I tried to wash myself.  The shower chair is now back down from the attic. He also managed to get some clothes on me and we were off. I was not missing this procedure.

Fortunately, I passed all the vitals tests and then that was that.  The procedure went well.  I did have to be in recovery for 2 hours to watch for bleeding.  No bleeding but guess what?  I started to get a fever episode. No one would give me Tylenol because of my lousy liver.  After much screaming and writhing I got my pill and then moved into PAKU - another higher up recovery.  Or they just don't like people screaming around the general public,  No visitors in PAKU. Of course, Geoff broke that rule. In the meantime they did the big nose swab for all that crap floating around out there.  Clear as a bell.  Going up to the room - with the lovely Joe who might become my personal uber.

Much better room than last week.  Even have a view of the turbine stations.  Gives G something to look at.  Lots and lots of tests last night.  No one knows where the fever is coming from.  And then there was another fever episode,  And again, PLEEASE GET  ME TYLENOL, Still the same old argument  as I am shivering away.  Eventually got the pill and things settled down.

Very busy morning - Drs. coming and coming.  They are suspicious that there is bacteria in the bile duct which these massive doses of antibiotics should wipe out.  Hope so. I can't have another attack for 24 hours until I go home.

(Geoff writes: Just as Susan finished the above, she had another episode. This time everyone was witness to it and the consensus is that the bile duct may be the center of infection. This is a nasty business. They want to schedule another endoscopy and Susan is less than thrilled. 

On another note, for her Valentine's Day gift, she has an appointment with the pancreas guy at Dana-Farber on Feb. 14.)

Sorry this took so long to get posted. It's been very busy here today.

Love you all and take care of yourselves. -s

S&G

Three Days Out of Hospital

 Well it turns out the chills and shivering were not anxiety but fever.  Although the anti-anxiety meds worked to calm it all down and I did sleep all day, I do not want to spend my days as a zombie.  When it started happening on Saturday -and, oh by the way, it is accompanied by a lovely kind of pain that runs down my left hip to the leg -- I knew I had to try something else.  So I popped a few Tylenol and within 45 minutes the shivering stops and pain stops I start to sweat and the fever goes down.  It's just a horrifying 45 minutes. I wasn't really a zombie but I was exhausted so it was back to bed and sleeping on and off the whole day listening to the rain.

By Sunday, I was all prepared to feel better - no more episodes.  Not so much.  I had one in the morning as I made a very serious attempt at reading the Sunday Times.  But it was my mission to get out of bed and try to take a shower.  Maybe even venture downstairs.  Which, horray for me, I managed to do.  I got my shower and went downstairs for lunch.  Speaking of food, this could be another reason I am so weak.  I haven't eaten hardly anything.  Geoff is doing his best and I have to be very careful what I intake but once I have an attack all bets are off.  It happened last night right around dinner.  None for me thanks.  Drinking plenty though. I woke up early because I was hungry.  Good sign.  I was able to watch both NFL games stress free thanks to the Patriots.  Anyway, after the last episode I started taking Tylenol as a precaution instead of waiting until it starts to come on.  We'll see how that goes.

I want to thank everyone for all their kind and generous words and offerings.  It helps so much to know that you are all out there.  I knew when the drugs were wearing off  I began to weep again.  I look at Geoff and just crack.  And all my family and friends are here for whatever we need.  It just turns me into a puddle.  I never once thought I would be "that" person.  It's like an out of body experience - like watching one of those medical shows on tv.  And this has been the first week.  I haven't even started treatment yet.

Speaking of treatment, this liver biopsy is very important because they need to identify the cancer.  The pancreas biopsy was inconclusive.  So please whatever it is you do -pray,light candles  cross  fingers, throw sticks - concentrate on it being a cancer they can treat.  I understand that as of today it is not curable but if it is treatable I might be able to hang on with the hope of science. Of course, quality of life comes into play.  But I have a better spirit than I did in the hospital.  I was so ready to just say take me.  The drugs are depressing and you don't feel anything.  Without them I can feel the difference. I want to fight this MF real bad  So keep the good juju coming.  Let's hope today is a better day.

Love to you all - take care of each other -s

PS. There is a place for comments right under the post.  If that doesn't work than just email me.  Please do not use the email form. If you are receiving the updates than you are on the list,  Thanks.

A Unexpected Journey

For those of you who know the latest news and for those of you who don't, I've decided to turn this travel blog into my medical journal.  We have so many caring family and friends, I felt this might be a better way to get everyone caught up rather than to keep repeating everything.  So that when we do see or speak, maybe we can move on to more pleasant things "How's that book you're reading"  "Seen any good movies lately". Of course, anyone who wants off the mailing list just say the word.  No pressures. And feel free to call with questions if we can answer them we will.  I am hoping that it might be a cathartic way to unburden myself.  And who knows, maybe help others some day as well.  So here goes:

On Jan 14th, after much testing and imaging, I was diagnosed with pancreatic cancer that metastasized to the liver. This is not good.  Of course, I went into hyperdrive and set up a "team".  A gastro and oncologist in Fairhaven as well as setting up an appoint at Dana Farber.  I met with both Fairhaven doctors and went to the Dana Faber diagnostic center.  Everyone keeps telling me I'm perfectly healthy - except for.......  I am hoping that this makes me a good candidate for a clinical trial.

On 1/22 I was scheduled for pancreatic biopsy. The procedure was done endoscopically with a camera.  They also put in two stents - one to open the bile duct which was blocked and a temp stent in the pancreas to get to the bile duct.  

Not to get into the gory details but the bile duct stent worked but I developed pancreatitis - which is an inflammation of the pancreas.  So back to St. Luke's we went.  I got checked in on Wed, on Thur they pulled out the temp stent.  The biopsy report show that it was inconclusive.  I will need a liver biopsy.  All of this meant that I would not get to meet the pancreatic specialist at Dana Faber. Coming back on Tuesday for the liver biopsy.  I've had enough of St. Luke's hospitality.

Our friend Paula came by yesterday as did Deidre and Geoff.  Geoff came back at night to watch the Celtics blow the Heat away!!

Managed to escape the hospital yesterday morning.  Shivering all the way home.  Got into the shower still shivering - found out it could be anxiety - panic attacks - you think??  Climbed into bed, took an anti anxiety pill and slept till about 7pm.  Geoff had a shake and one of Paula's homemade Italian anise cookies waiting for me.

This morning things are still moving slow but I feel if I can rest up on the weekend I'll be good.

Love you all -- take care of each other -s

 Due to unforeseen circumstances, we have been forced to cancel our Great Australian Adventure.  We would like to thank Kash Patel from Baryia Travel in Newton, who worked so diligently for the past 9 months getting this itinerary together.  

We are very saddened to do this, but at this time, we have no choice.

Take care of yourselves and each other -

love, Susan & Geoff