cancelled (postoned, really)

I just got a call from my surgeon with the worst possible news-he's come down with the flu, vomiting and diarrhea and cannot do surgery tomorrow.  He said he's very sorry but just not humanly possible to do an 8 hour surgery in the morning.  I do understand but at the moment am just freaking the hell out and don't know how I'll possibly get thru this.  My folks drove all the way out here, booked a hotel for the week, changed ALL the holiday plans and now we have to turn around and go home tomorrow.  I can't stop crying.  I called my parents room (we're in a hotel tonight) and my dad came over and was very calm and tried to help me calm down.  It really will be better later, and the surgeon will be there the whole time instead of his partner caring for me like was planned for this week.  Its just SO incredibly frustrating and I'm completely overwhelmed.
  

Now it's Thrusday and have had a few days to digest all of this craziness.  When I got that call from Dr. Moser (the pancreatic surgeon) I was in shock and said something like "Soooo,  I just go home then?" He was so sick he had to end the conversation to run to the bathroom.  I suppose I'm lucky he didn't come down with the flu 12 hrs. later, at 9:30am, 2 hours into a 9 hr. surgery.  (actually that was my mom's worry, but I  agreed with and wondered about that one myself) I was just crying and rocking back and forth sitting on the bed.  I just felt helpless and scared.  My father really did try to help me calm down immediately after the phone call, and his usual calm demeanor helped me a bit.  I realized I was more worried about how the postponement would affect my parents, people set up to feed the cat and others.  My parents assured me that it was not a problem for them, tho it was not pleasant for anyone, it was just a freak occurrence.  It was obviously not my fault and beyond my control.   We will figure everything out and just do it all over again.  I have to wait till Moser's PA/assistant, Jennifer, comes back to work on Monday to re-schedule it.,   I'm now glad surgery will be in 2011.  As long as everything goes as planned for the surgery I will be feeling better for the year 2011, I have high hopes for this upcoming year...                                                           

Lara's dad test of posting to her blog.

Hi all,
This is a test to be sure I can post to this blog to provide info to all Lara's friends on a timely basis. I'm sure in the upcoming days there will be times she will not be up to doing her own posting.

Two nights in Philly

Just a really quick note tonight because I am exhausted..   I spent the last 2 nights in Jefferson Hospital in Philly and its really impossible to get any decent sleep in the hospital.  I caught the train in Lansdale very early Tuesday morning, thanks to my awesome dad who picked me up at home and drove me there, rode to Market East and walked 3 cold blocks to Jefferson.  I was scheduled for an ERCP to place a stent in my pancreas at 7:30am.  Dr. Moser (surgeon at Pitt) requested Dr. Kowalski place the stent a week before surgery to help open the duct.  An ERCP is an outpatient procedure, normally, but as you know by now, I'm definitely not normal.  The resident doc going over info pre-procedure told me there is a 5% chance of pancreatitis from an ERCP.  I suppose those stats are for those "normal" people, but I and my other cranky panky buddies experience pancreatitis flare-ups around 50% of the time after an ERCP.  So, while optimistic things would go well, I still packed a bag in case they kept me overnight.  Even tho I was given Zofran for nausea and Dilaudid for pain before I even woke up I still came to with horrible pain and nausea, and was vomiting within an hour.  Obviously, I was admitted for the night.  The next morning Dr. Kowalski said I could likely go home, that he knows I'm good at managing my disease at home and smart enough to know when to come back to the hospital if needed.  However, by late afternoon I'd not seen him or other Dr.s, had my nurse page him and he said I really should stay one more night so I could have adequate pain relief and try solid food in the morning.  I woke up in a lot of pain but tried not to ask for Dilaudid since I was determined to go home.  Had a bit of oatmeal for breakfast.  So eating food and not asking for much pain relief got me a ticket home today!  My folks came to the big city to get me, just as it started snowing, which made for a long, slow ride home.  
Now I'm home, had a long, hot shower and I'm sitting in bed with the Babycakes curled up next to me, purring away.  I will be going to sleep soon, which is a rarity for a nite owl like me.  Oh, and I had the best roommate ever in the hospital!  Her name is April, she's about my age and was in for a stricture in her colon.  Since I have a stricture in my pancreas we became "stricture buddies".    We swapped info and will keep in touch.  It was just so nice to have someone to talk to and who understands life with a chronic illness (she has Ulcerative Colitis).   Plus in 6 years in and out of hospitals I've had some wacky roommates here and there, but that's a story for another day.  April and I talked a lot about losing friends to chronic illness.  I know people give up on us after canceling plans many times, not showing up to outings, even not feeling up to talking on the phone, but we still really need friends.  That's my thought for the day, not exactly a tip, but hang on to your friends, no matter how distant they get, that's when they need you the most.  
Thanks so very very much to all of you who still are here for me, I love and appreciate you all!
 

Weird Al Yankovic - Pancreas

Video Day!

Hi, the videos I've been sharing today were intended to go all in one post, but I really couldn't figure that one out right now.  So, sorry for all the separate posts.  They are all about how a pancreas "should" work, so when watching keep in mind that mine does not secrete enzymes or produce insulin.  In the video by Heywood Banks (who I love) is the famous line "may you never have a cranky pancreas!" which the facebook friends with pancreatitis, got our name "cranky pankys".

Video

Heywood Banks Pancreas

crisis day yesterday

My latest crisis: nurse/assistant from my  surgeon's called yesterday at 5pm to tell me he insisted on pushing surgery to the following week, I kinda freaked out and cried then she talked to him and he agreed to keep the surgery on 21st if I agreed to have his Jr. partner watch over me over Christmas. I did of course, we have tooooo many plans set to change anything, I'm coming all the way across the state!  It may not be ideal but i guess it will all work out. I also have to go get a stent placed by ERCP in the next week or so, down at Jefferson in Philly. That's gonna suck but I've been feeling sick most days lately, am so worried about everything and having too many things get in my way.  An ERCP often causes a pancreatitis flare up in folks with CP.  It's caused them for many ERCPs.  

Also, I've been mostly in bed the last 2 days, and woke late yesterday afternoon to discover Babycakes had peed on my dirty laundry in the closet.  Then found the door to her litter box had gotten shut, I probably did it (well, had to, she doesn't shut doors) but don't know when and she was bugging me a lot but I just thought she wanted more (new) food in her already filled bowl, like usual.  I'm really frustrated because its really my fault, I normally scoop out the litter every single day.  She's only peed before when the litter wasn't clean.  Simple solution to just keep the litter clean, right?  I suppose I have to get out of bed every day for that to work.  Anyway, all laundry was washed twice, 2nd time with Clorox 2 and it seems all smell is gone, but I still may just get rid of some older stuff. Also, there is now a big rock (from Belfast, Maine) in the door to her litter box, it can't get shut accidentally anymore.

After most of this calmed down, still running to the laundry room, my friend Paul came over and we went to Zern's, an indoor flea market.  Was good to just get out for a while, even tho I was really over-heated, I often am lately from the narcotics and/or pain,  and there were too many smells there-cooked food, raw food, produce, etc.  Just took a Zofran and kept going.  I'll go back there soon for some produce, its good there and some local and its cheap.  We came back to my place to watch a documentary, one few channels I have on my antenna TV is all documentaries.  It was about the Gerson Institute and therapy which is mostly about healing with nourishment, vitamins and minerals.  It is mainly taught and used to cancer and chronic illnesses, without drugs and mega-doses of vitamins and minerals and raw and  organic food.  It all sounds wonderful if I had the $500 to take the course offered, buy and keep organic foods, and constantly juice and prepare my own food.  They also talked a lot about the health care system and pharmaceutical companies denying or not trying this method because it so easy and inexpensive I but then their workshops, therapy and information is so very expensive and not covered by any insurance. I do take many supplements but they only do so much and I do wish to improve my diet but just have issues with food right now. 

So I'll end on that (as I have a Diet Coke and vitamins for breakfast) and leave with a tip: check out what Gerson therapy is about for yourself, especially if you have a chronic illness or cancer or know someone who does.  They also use this method for extreme weight loss.  I can't recommend their course or therapy (where you go to a treatment center) because I don't know enough about it, and its very expensive.  I believe it makes a lot of sense though, and if you did enough research on your own or with a natural healer you could follow a lot of their ideas. 

 

http://www.gerson.org/

http://www.healingdaily.com/conditions/Gerson-therapy.htm 

Wikipedia article about Dr. Max Gerson 

Its scheduled...

So, I've neglected to write it here but have told most folks already...I'm scheduled for surgery at UPMC on the morning of December 21.   The (at least) 2 week recovery in hospital time means I will be there thru both Christmas and New Years.  I guess most people wouldn't want surgery for Christmas, but I do.  I've wanted to be "fixed" for 6 years now.  From the first episode of pancreatitis I've wanted this to be over.  As long as all goes well, and the surgery does what it should this WILL be the best Christmas present ever.  Of course I'm also a bit bummed about missing the "actual" holidays and scared of the surgery.  Apparently all of my fears and concerns are "normal", according to my therapist yesterday.  Even the brief wishes to just cancel the whole thing and stay home.  I certainly don't feel normal, and this is all scary to me.
I am having a surgery called the Berne procedure and if you care to hear the gory details the basics are here (click on the word here to go to site).  That article is the best explanation I've found on the web (it is rather technical), and personally have gotten most of the info directly from my Dr.   It is very similar to the Berger procedure, which is also on that page.  The reason Dr. Moser chose this particular surgery is to stay out of the way of the portal vein, where the blood clots are.  It will keep the pancreatic duct from continually getting backed up, blocking  food, causing nausea and vomiting and hopefully get rid of the abominable abdominal pain.  (tee-hee, see what I did there? glad I can at least amuse myself while writing)  The surgery will last about 9 hours.  That's the easy part for me, I guess, I'll be blissfully unaware of the difficult work the Dr.s are doing, and the worrying my parents will be doing.  After that, well that's the part that's scaring me.  I will probably be in intensive care for a day or two, and then a long haul of recovery.  Apparently abdominal surgery is one of the toughest and most painful surgeries.  I already favor my upper abdominal area, where most of my pain is, but that will get worse for a while.  There will also be quite a big scar.  
All that's left to get me to December 21st is cleaning my apartment, arranging for people to feed Babycakes, and some pre-op testing.  I know she will be taken care of, but I will really miss and worry about Babycakes.  I also know cats don't have the greatest sense of time and she'll just sleep thru most of the time.  I'm also having a pre-holiday/pre-op party in a week or two, so I can have a bit of Christmas and a chance to hang out with friends before all of this.  
I'll give you more details as I have them.  Thanks for reading.  I don't have a tip today, just keep in touch with me as I go thru all of this!