I have family, but my closest family is 900+ miles away. I have friends, but don't want to intrude on their lives SHOULD I need any care. So far, I've been blessed (if you can say that). When I needed them, I had friends and acquaintances offering to drive or ride with me on the train 55+ miles to chemo and radiation, etc.
I had a boyfriend when this all started, and he stuck around for the first two years (part time). It wasn't serious before diagnosis, and he is young and I didn't want to burden him with this. Nor was he able to deal with the emotional side of this. I've dated a few times in the past 2 years, but on date 2 or 3 when I mention cancer and terminal in the same sentence, they run... Wonder why??? roll
I'm on disability, and spend each day thankful I'm not "sick". I still sing karaoke, try to dance, and work very part time. When I "get sick" I guess I'll go somewhere for people on Medicare. I try not to think about that. I've lost my full time job, my house, and some friends. I am trying my darnedest not to lose anything else to this stupid thing.

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(6 replies, posted in Members' Cafe)

Me, too! Here's the next best thing... Well, not really!
http://s17.postimg.org/o7pe4qrwr/image.jpg

I was talking online about a cc bracelet.. Here's my first try! It's adjustable, too!
http://s4.postimg.org/y4bshr6ft/image.jpg

I hope you get some energy back. I had already lost 2 hepatic arteries when they did the portal vein embolization... We thought I could finally have surgery! Well, they nicked my lung and gave me a pleural effusion instead, so my breathing and energy were nill.
I will say that after the effusion was better, I didn't notice any drop in energy.
Although they downplayed the difficulty, it can be tricky. Give yourself some time... The body has to adjust to the changes in blood flow, along with the necrosis of part of your liver.
If you are concerned, ask your onc. They are there for you, after all. Maybe his or her assistant can help if you can reach them.

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(17 replies, posted in Members' Cafe)

Love this post! Keep that sense of humor and you'll have the whole ostomy colony laughing! (I know... Bad play on words... Colostomy... Ostomy colony... Get it?? Oh, never mind!! lol)

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(6 replies, posted in Members' Cafe)

Glad everything went well!! Now keep those feet up and don't overdue it!

I started cycle 27! Yep, I said 27. That's over 2 years of stability on this drug. We have decided Lilly doesn't want to deal with the added work of making this a phase 2!!! They have arms A, B (I'm in B), C, D, E, F. C-F have additional drugs with the treatments.
I'm kind of getting the idea I'm an enigma on this... Still stable after 2 years. I know I'm one of 2 they know if that's on year 2. The other person is a month or so ahead of me. Many people have dropped out.
Hair is staying stable, too. As long as I keep it short, that is. When it gets longer (shoulder length) it gets really straggly.
And we have upped my Lasix again. I'm now on 60 mg a day. The left leg is almost always at least a little swollen, with really bad cankles by the end of the day. Unless I wear compression stockings! And I like sandals! Without socks, thank you! So I have to be careful about wearing non supportive sandals, etc... And the left leg almost always hurts now...
But that's my rant. Not much to complain about! So I've got a bum leg! I've got a bum liver, too!! Trying to change my diet to a low sodium diet... Unfortunately, bagels are now off my diet!
It could be worse... They could have told me no more... (SHUDDER)... CHOCOLATE!!

Thank you so much for the news! It sounds so promising! I have talked to my onc about this drug and she knows I am veryveryvery interested!

Me, too, Duke!! I was devastated when my surgery was cancelled. But have learned I CAN and WILL live with this bast#rd!

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(21 replies, posted in Members' Cafe)

Hey, momma!! I'm excited for you! Sending positive thoughts and prayers.

Oh, crap! I should have said you're gonna hear a sh#%load of stupid puns!!

Great news Momma!! Here's another: I guess it's all just been a pain in the A$$ for you!!

Glad SOMETHING is gonna be done for you.
When I broke my tailbone I got all the "what a pain in the a$$", "don't you feel like an a$$?", etc... I'm sure you're gonna hear plenty!!
Good luck and keep positive!!

Love you!

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(8 replies, posted in Members' Cafe)

Haha Lainy! I'm a Cancer patient: I have no money!!! lol

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(12 replies, posted in Members' Cafe)

Congratulations Grammy!!

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(8 replies, posted in Members' Cafe)

Update: she is still unresponsive.... He's posting how devastated he is. and says if the doctors say she is brain dead he will rethink his decision.

I think I'm going to put a notarized piece of paper in my wallet saying no one has the right to overturn my DNR decision.

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(8 replies, posted in Members' Cafe)

I have to vent on here because I can't post this where I want to! I know this guy who's a friend on FB. His mom has been sick for many months. She keeps falling and has become very frail. She has gone from the hospital to rehab centers for the past few months. Her latest issue was pneumonia.
Here's my vent...
SHE HAS A DNR. He received a phone call early this morning that she was unresponsive. He broke the DNR and told them to incubate her and do whatever is necessary to try to get her back. Now? She's intubated and unresponsive. I realize it's his mother and I don't mean to sound cold, but SHE HAS A DNR IN PLACE for a reason! So do I!! Is it that easy to break the wishes of the patient??
I think he is being very selfish. Again, I realize it's his mother, but don't her wishes count?

And as I'm writing this I'm getting ready to go to another visitation before a funeral. I still can't do funerals, but I'm going to pay my respects to my friend as much as I can. She was diagnosed with pancreatic cancer in December. I HATE CANCER!

Here's a pic of my parents and I in 2011 shortly after diagnosis. And Lisa Craine and Lauren Kunklier and I in 2012(?)

http://s8.postimg.org/3q0e3qpch/image.jpg

http://s8.postimg.org/3oqgabnip/image.jpg

Nice pics. Great to put faces to your family!

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(12 replies, posted in Members' Cafe)

http://s22.postimg.org/snuwt4q9p/image.jpg
Ok, here's my try. Me and Stazi.

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(3 replies, posted in Members' Cafe)

Great pic! And great new feature! Love this! Maybe I'll post a pic of Stazi! lol

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(8 replies, posted in Members' Cafe)

I moved to NJ at 8 and had a horrible time at the movie theater. I wanted a grape pop and she tried to give me a Popsicle. I finally got her to figure out I wanted a fizzy drink. She said "oh, you want a grape soda!" Soda??? HORRORS! Club soda?? Yuck! Then I got the "grape coke"... Never have figured that out!
We had plug ins instead of outlets. Sacks instead of bags.

You forgot "ufdah"!!

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(8 replies, posted in Members' Cafe)

First, you have to know the Midwest accent of all of us Norwegians, swedes, etc... Practice your "ya, you betcha!"


Sven and Ole

Asked his occupation, Ole said, "Panty Stitcher.. I sew da elastic onto da ladies cotton panties."

The unemployment clerk looked up Panty Stitcher. Finding it classified as unskilled  labor, she gave Ole $300 a week in unemployment compensation.

Sven, when asked his occupation replied, "Diesel Fitter." The clerk looked up Diesel Fitter...and it was classified as a skilled job. So, the clerk gave Sven $600 a week in unemployment compensation.

When Ole found this out, he was furious! He stormed back into the office to find out why his friend and co-worker was collecting double his benefits.

The clerk explained, "Panty Stitchers are unskilled labor and Diesel Fitters are skilled labor."

"Vat skill?" yelled Ole. "I sew da elastic on da panties. Sven puts dem over his head and says, "Yah, ------------- DIESEL FITTER".

(If you don't understand a word of this, then you're not a Norwegian, Swede or Dane or from Nordern Visconsin - or Minnesota, or Nort Dakota!…….too bad!)

Thanks Marion. It was interesting reading. I just wish it could move faster!

Here's the skinny on this trial. I thought it had gone to phase 2, but was told yesterday that there are a number of "arms" to the phase 1 trial. It has been phase 1 since something like 2008????
The one arm, which I'm on, is solely the LY drug. The arm with LY and Cisplatin is closed. They have another arm with gem/cis and I think another arm opening up. I don't understand why it's taking so long to get to phase 2?

Personally, I'm on cycle 24 and going along as expected. Still full of water weight but it beats the alternative!

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(7 replies, posted in Members' Cafe)

It was 4 years ago tomorrow that I started on this roller coaster. I went to my GP who said I was having a typical gallbladder attack. Nothing to worry about.....
It took a month of tests, scans, biopsies, etc. to get a diagnosis, and when I received it, I was told I basically had less than 2 years to live.
Boy was that guy wrong!!! Glad I didn't let HIM cut me!