Sammy earned her wings

It is with extreme sadness to inform everyone that last night, Friday the 30^th at 1100pm after a heroic fight, Sammy’s two year long battle with pancreatic cancer ended. She died peacefully at home with her family at her side.

Visitation: Friday 3 to 9 PM at Colonial-Wojciechowski Funeral Home, 8025 W Golf Rd, Niles

Funeral Saturday, November 7th at 9:15 from the Funeral Home to OLPH Church at 1775 Grove street, Glenview. Mass 10:00 AM. Interment at All Saints Cemetery in Des Plaines.

In lieu of flowers, memorials may be made to:

"sr. Paulanne's Needy Family Fund" at OLPH, 1775 Grove St Glenview Il 60025 or

"Transplant Foundation, Inc." at 701 SW 27th Ave, Ste 705 Miami, FL 33135 Tx# 886-900-3172 www.transplantfoundation.org/donation.asp

Dr. Moon Visits!

                                                        (click on a pic to enlarge it)
Hey everyone-

  This weekend I had a super awesome visitor.  I want to warn you now though, as I'm typing this I'm watching a hawks game and I'm not in the happiest mood about it.  Also, I get to blame anger on the steroids I'm on.  So yea!!  Anyways- Dr. Moon who did many of my surgeries in Miami and basically turned me back to me in 6 months came and visited! He had some medical things to do in Chicago and we worked it out that he came and visited at the house!  He is such a great guy I couldn't begin to explain.  You can tell no even by knowing him that he's great just by the fact that you know a surgeon of mine came and visited me across the states!  It was great to see him :)  He is such a great person to talk to, and it was like an old friend was visiting, not somebody who has been elbows deep in my belly! That was maybe a bit much huh? ew, sorry.  Anyways, the first night we had dinner that worked out great - a thank you to HPPD people once again, we had some Maggiano's brought to us that night, yummo!  Perfect timing!  The second night my parents brought Jang to Pizanos (which I personally am not the biggest fan of, I think the crust is oddly buttery), but he got to try some Chicago style pizza :)  Here are a few pictures of the weekend while he was here.  I asked him how to write something for my wall in Korean, and he came up with something pretty cool.  The top part is my name, and under it is a phrase he says is kind of popular right now, slang really.  It means you're cool; you're tough; etc.. so it seemed to fit just right :)   I have one minor mistake on the writing, but you don't know that right? :)  Thanks to Doc Moon for a great weekend!  I also got to see 2 of my girlfriends this weekend which ALWAYS makes me happy.  Spending time with people I love is all I can ask for.  

Medically- oh yea, that's what this is for right?...... Medically ;) we drained some fluid at home for the first time today.  My nurse came out and helped us, which I needed I was (and still am) super nervous that it could spread infection.  Really its a risk just like the other lines I have, but I was just nervous that it could easily not be sterile.  We seemed to do okay today, and I believe we will continue to do the same.  Unfortunately when you're at home you can't really drain too much at a time, because there's a risk your blood pressure could drop fast and you're not in the best place if that happens and you're at home.  In the outpatient place I did about 4 liters both times, but at home I can do 1.  It still helps things, so we'll probably do this for a few days to help.  I think thats all I can type for now, the game is giving me road finger rage. rarrr!!

Still- I always send lots and lots of love :)

Sammy

Another Day...... Another Day....

Hey everyone... I hope that everyone had a good week and is almost ready for the weekend!  As far as the medical stuff goes with my abdomen, I had an interesting day of ups and downs yesterday.  We were originally supposed to have the procedure to drain my abdomen of fluid again, which is bittersweet.  It's not the most fun thing in the world, but it feels so  much better afterwards in regards to pain.  It relieves pain in my back since so much weight is put on so quickly.  I wasn't going to let the pain/pressure in the front and back get ANYWHERE near where it was last when I had to go in.  

Oh boy.. that was bad.  They had to drug me up quite a bit to get my pain to tolerable.  But anyways, this time that I went in I found out there was a possibility of putting a catheter in my back/side to get rid of fluid in the pleural (I think thats right?) area.  It's the area around your lungs but not IN them...This brought back memories of many pleural cathetars that were in for weeks and usually being pulled out just to be put back in in another spot, or side, or both.  Anywho, I was NOT happy when I found out about the possible lung drainage that day.  I knew it would come up at some point, we were thinking about a chest x-ray especially with the thought of pnemonia, but he just used his ultrasound that he used on my tummy to mark to also look in my lung area for fluid but didn't see any YAAAYYYYY!!!!!! This made me so happy I cannot even tell you.  I wouldn't have them left in or anything, just drained and removed...but still I was scared.  

 

Anyways, we emptied another 4 liters of fluid since last Wednesday (so 7 days) but this time the catheter was left in.  It's entry point is on my right side, opposite of my ostomy.  There is a tube running on the bottom part of that area in my belly, almost like a smiley face at the bottom (but you can't see the tube.)  The tube is relatively small, and it looks like one of those hoses with all the holes in them.  So whenever I feel that I need to empty it I will be able to do this at home, but have to be so careful and clean.  Its another large risk of infection so I need to be careful.  When its not in use there's about 6 inches or so of tube in a circle on top of a foam pad thing (definitely the medical lingo) and then we use a tegaderm (clean plastic sticky barrier we use for lots of things) to keep it down and sterile.  

So that hopefully was enough medical stuff to make up for my last blog that was more "diary" entry as I call it.  Today I actually have quite a visitor!  Dr. Moon from Miami is going to be in town for a medical conference I think, so he's coming over for a while!  This is exciting!  It is a bit of bad timing though.  I'm moving very slowly and in pain now from the procedure and I would have loved for him to see me moving about more freely, but hey whatcha gonna do?  Also I'm usually using the oxygen most of the day now, but again, oh well!  If it weren't for him this blog wouldn't be posted.  Hope everyone has a good weekend, maybe I'll find something interesting for a post.  It's a bit nippy outside but enjoy the outdoors before snow (ewwwwwwwww) while we can :)  As always-

Lots of Love,

Sammy

P.S. soooomebody I know who maybe happens to be one of the greatest dad's in the world has quite a big birthday coming up.  We're gonna have to break out the AARP cards, wheelchairs, maybe even lend my oxygen tanks over to someone on the 15th. ;) Love ya daddy

Woaw look how fast this one was! :)

Hey everyone... I'm sitting here with 'Nebzie' my new nebulizer like the one I used to use when I was a kid.  It's helping to open up my airway so I can breathe better with what seems to be a case of pneumonia.  Hopefully it'll break stuff up in there so I can cough it up and get it OUT! (yummy, sorry) Here's a picture for immature friends like Ness who thinks the word Nebulizer makes me a dork.  Anyways thought I'd write in this short one that tomorrow I'm going to get fluid drained again (before the pain reaches ANYTHING like it did last week), and the next day probably a more permanent catheter put in so I can drain the fluids at home when I want to.  This will help with pain and other issues.  That's all for now folks! 

Lots of love,

Sammy

Here it comes!!! Hope you have an hour to read!

Hey everyone... sorry about all the delays, hopefully I didn't make anyone nervous in suspense.  I know its been a while since I've written, so I'm gonna go back a bit, so I apologize if I'm repetitive in anything...

Alrighty well I'll start off with saying how great my support is.. as usual.  I'm 'stuck' in my room most of the day... which actually doesn't bother me, don't worry!  I just have a couple wires/tubes or what not, connected to me and different things, so I get all tangled up if I move around too fast and don't think about what I need to move and such.  I've watched a lot of tv series now.. lets see... Lost (watched 1-4) thanks to Jennifer M. for sending that first one :) I was also recently hooked on 'Arrested Development' ..which I think may only have had 3 seasons? Anybody know?  We don't see past season 3 on netflix so it may be all the way done, we're not sure.  Of course I'm keeping up with the current 'House' on tv....love that!  I tried out another.. Veronica Mars.. which I still may watch more of, not sure yet.  I'm trying to transition over to reading more possibly instead of just watching these shows all day.  Any good book suggestions are welcome.  Tony and I are reading a book "together."  It's a series I used to love when I was younger (no laughing) but its Animorphs.  I'm trying to get him into it like I was :)  We're both just reading it at the same time.. well not literally.. but both reading so we can talk about the book.  I'm also reading a book from high school english which makes me feel dorky, but I really did enjoy it at the time so I figured why not again?  It's Tortilla Curtain by TC Boyle.  

Besides the books and movies I've had friends visiting constantly, even though some are already in school (some even all the way in CO- yes you trish :)  They visit me and are nice enough to put up with my shows, usually food helps reel them in :)  Just kidding, but really they are so great to see all the time it makes a big difference for me.  My room is kind of the new family room, people hang out in here, we brought some chairs in, and there's my hospital bed.  We decorated one wall with hockey stuff, of course the big signed Toews jersey in the middle.  I also just received some stuff from a hockey player who has been my childhood idol.  If you knew me when I was younger I was ALWAYS wearing my Jeremy Roenick hat, even in my sleep.  I just got an amazing Hawks jersey that he signed to me (with my name and everything eeee!).  We're going to try and get the jersey a good frame and all, so everything looks nice.  I'm not possitive who exactly set it up but I want to thanks sooo much to the hockey connection through Highland Park that made this possible.  I can't tell you how amazing it was to get that!

My other wall of my room is quite the opposite.  Theres a space under the window, maybe about 5 feet tall and 6 or 7 feet wide, and we've been painting little silly things on it.  My whole family has done some stuff, and a lot of my friends had fun contributing.  I will try and get a decent picture on here...

    (click on the picture to make it larger)

Wow this is getting long already! We need an intermission or something, yeesh!  It's motivation to keep up with the blog so I don't have as much to say everytime :)  Don't worry, I do enjoy writing on the blog.  This doesn't quite flow in the writing here, but just as an FYI, usually if there's no news on here, its good news.

Also to pass the time Ive been making old school friendship bracelets.... I'm not as good as Tony though, he can make such cool ones!! I was proud of my colors matching and straight lines and he comes along with his name written in the string and such.. yeesh!  He'll have to teach me harder one.  I like making them for friends and family though.  Ive got a matching one with Carisa, a different matching with Alex, and a matching one with Tony.  It's a nice way to pass time, and almost theraputic sometimes, doing the same motion and watching myself create something.

I've had a lot of aunts and uncles stop by, some bringing company (plenty enough) and some bring goodies (yummy in my tummy.)  I have scheduled visits and get to play with certain people when I want.  I love hanging out with anyone whose willing to sit in my room and chat or watch movies :)  

A lot of people ask me if there's anything I want to do, but I want to let everyone know I am completely content with what I'm doing.  All I want is to lay around with family and friends, and thats just what I'm getting.  So really, I'm not being modest when I say that I'm fine, I'm really getting what I want!

Bella sleeps on my bed with me a lot, she's such a smart intuitive dog.  She can tell when I'm feeing more sick and doesn't try and play as much, but she'll snuggle up when I need some lovin!  She's such a great pal :)  She can cheer me up so easily...but also sometimes she can make me a bit crabby.  Shes started to 'beg' for food a bit.  We don't give her people food, but I think shes smart enough to realize how good we eat and her boring food isn't quite cutting it :)  Shes amazing though... gettin pretty big too!  I even made a tiny friendship bracelet for her that I put a small bead on thats attached to her collar :) It's cute, but only a matter of time before it breaks off.

Medically...about time I start this part huh?  What am I doing, writing a diary?

So about 5 weeks or so ago, I was still having pains, and contant nausea.  I was put on some new meds that are helping so much.  Since this new med, I'm not nauseas when I eat anymore! This is such a big deal, I can't even tell you how nice it is to eat without the fear of the afterwards.  It's also given me an appetite, which I really needed b/c I was getting too skinny and nasty, and so I feel a bit better with the apettite I have now.  Unfortunately I started to develop ascites (an accumulation of fluid in the peritoneal cavity. 

 

It's suprising how large my stomach actually got.  Looked like I was expecting triplets in about 3 months or so... Tony and I had already began to name the 'children.' haha.  So all of that fluid was starting to cause major, major pain.   Monday night while Dasha was over I got to the point where I couldn't handle the pain, because it was just pushing on different ograns, causing things to back up, etc. etc. all that yummy stuff.  On Monday night we called the nurse and she came out and we started an IV dilaudid instead of just pills, hoping that would help.  Eventually I went into the in house hospice center they have,  to try and get my pain under control then go back home.  We eventually tapped out all the fluid that was building (4 whole liters...yikes!) and there was still a little left.  I cant remember the medical reason why but 4 is the limit for your body.  I've started to see some stomach distention again, and I'm guessing during the week I'll go and have that tapped again.  I was pretty nervous the first time, but they gave me a nice cocktail of drugs to go, and it was fine.  The fluid is only in the abdominal cavity, so the needle only goes in about an inch, maybe 2.  They give a local and just drain it out.  Afterwards it felt so weird to be able to sit up normally and see my toes!  I left Wednesday feeling much better. 

The pain in the abdomen hasn't started yet (besides the skin stretching) but NOTHING like what I had before in my lower back and abdomen.  We will get it done before it gets to that point again of course, we learned our lesson!

At home I've become quite anal about my meds and all (which is good.)  I have a very detailed typed up list of meds to do when, and all facts I need to know.  I have a brand new appreciation of my dad and how much his organization helps us.  I also need my desk of medical stuff to be organized and all.  It seems to be a small case of OCD after a new med, but hey I'll take it!

Last minute I wanna give a shout out to Holly and Phil Dolci, congrats on your wedding!

Lasty, I've assigned a new doc to my case, he goes by "docta, docta" ... Tony :)  He helps check things off on my chart and ask questions.  My other siblings have been great as always, helping me with small things like (i could go for a root beer, i buy you fly?) to larger favors.  I'm amazed at their maturity how they are able to try and keep their life as normal as possibly while dealing with this.   My parents really are amazing though.  They both support in different ways, and there is NO way I could do it without them.  Sometimes I think about other parents I've seen in hopsitals throughout my stays and I feel soo lucky to have them.  We all are able to get on each others' nerves now and then of course, with this stressful scary environment... but I want to thank them.. once again... for all they do.  I wouldn't be here without them.

So again, thank you everyone for all your support, its kept me going.  I'm proud I made it past the 1 year anniversary of my surgery... I had some pictures saved (don't worry you definitely wont see them) and its nuts to see the progress I've made, just from an external point of view.  

If I forgot something/anyone I'm very sorry this was a long blog to write on dilaudid! ;) Naw don't worry this were words from the heart, not the drugs.  I've had a list made of things to write on the blog, and its been building up.  

Lots, and lots, and lots , and 298374 lots more of love,

Sammy

p.s. sorry about the weird fonts and such, I don't know whats going on, and for some reason now all the other blogs have small font too... but hopefully you're caught up and can read this.. if not.. I would suggest copy and pasting it to a WORD program or such and making it bigger to read.  That's my only idea 'cause it doesn't wanna get fixed on here!  Good luck!

Darn.... Procrastination ...never leaves me alone!

Hello everyone.. turns out I will never lose my ability to not do things on time :)  I spent basically the entire day making myself a new detailed med-chart with everything they've been changin' up.  I know I probably put people in suspense with my last post... but I honestly don't have it in me to write a blog now.  The 'news' isn't anything very important or even news to some.  So don't get all flustered :)  It's just some info about whats been up with me lately.  Tomorrow I think I will have time to get a nice detailed blog in there, with fun details.

Lots of love (till tomorrow),

    Sammy