To all of you who have been communicating with the commander these past few months thank you for all the support you gave to her.  She had a sense of control and belonging by being a part of this group.  The Commander lost her battle with cholangiocarcinoma early Wednesday morning on July 30 th.  She went peacefully and was comfortable.  This is her sister writing this message.  Her son Luis is in my care and is doing well under the circumstances.  Thanks to all and may God Bless You.
Peggy

Thanks to all for caring about me.  I continue to have ups and downs (don't we all) but I am so blessed to be surrounded by a loving family and woncderful friends and neighbors.  I hit a very rough spot last week but am on the mend now.  Pain is pretty well controlled, my biggest problem now is nausea.  It's tricky trying to balance calorie intake and vomiting.  But, my spirit remains strong.  My son comes to visit almost every day which brightens my day but I swear he grows taller every day!  So, as they say, every day is a blessing so be grateful for each day.

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(8 replies, posted in General Discussion)

One thing that I have also found is that one food can disagree with you one day, well the next day it might be the best tasting food ever!

Jeff, I have surpassed my Weight Watchers goal weight, maybe we should pose in one of those muscle magazines together!

Kris, once again what a great post!  knowledge is definitly power but that does not mean it provides all the answers.

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(38 replies, posted in General Discussion)

thanks again to all.  also remember that I haven't kicked up yet.  I could be around for months, maybe years! I am a cantankerous old broad!

thanks to all.  The way I look at things, Hospice isn't a matter of dying but a matter of controlling my life as long as I can.  I am at peace, more so now than I have been in a long while.  Stopping chemo was a personal choice but one that I am at peace with.  I have 24 hour care because I am pretty much stuck to my bed or a wheel chair.  especially since I sprained my ankle trying to go to the bathroom by myself!  My pain is tolerable and they provide me with anything I need.  The hardest part was realizing that I could no longer care for my son, so he is now living with my sister (his guardian).  Fortunately she just lives down the street and I see him almost every day.  I am having problems lately with my short term memory, I will be mid sentence and stop, not remembering what the heck I was talking about.  It is very frustrating for someone who is as talkative as I am!
I will still be hanging out on CC.org and will post as often as I can, likewise on my blog. 
Blessings to everyone!

Barb

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(38 replies, posted in General Discussion)

thank you all!  of course when it rains it pours!  I fell the other day and sprained my ankle.  Proof positive that just because you have cancer doesn't mean you can't have anything else wrog.

I Will be blogging asap

oh Liz, your post made me cry, my heart goes out to you.  Just remember this, it does NOT, I repeat, DOES NOT matter what your dad or your sister say, what matters is that you had, and still have, an amazing relationship with your mother, and you made her last days a comfort.  Never forget the love you have shown to your mother and ignore the rest.

I have been reading this thread with great interest as I think I am at the point where I need to quit work.  I work from home which certainly takes the commuting strain off, but I find myself unable to do what I should be doiing.  My question to you smart people is what about medical insurance?  what did you do about that?

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(4 replies, posted in General Discussion)

prayers and good thoughts go to them

whenever I see these so called miracle cures I feel I need to remind the messenger that cancers are not always the same.  One diet may work for one specific type of cancer, but not specifically for another.  There is no such thing as a "cure" for all cancers, no matter how much i wish it were true

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(3 replies, posted in General Discussion)

Yes you most certainly can get it if your gall bladder has been removed.  It happened to me.  I had my gallbladder removed Nov 06 for gall stones, and other than the stones everything looked normal.  fast forward to Aug 07 and WHAM, what I thought was the flu or maybe a common duct stone turned out to be CC with mets.  Some cosmic joke, eh?

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(13 replies, posted in General Discussion)

Jeff, your wisdom is one of the reasons you are my hero!

Kris, calm down, it could just be related to what you ate.  Keep an eye out for the whites of your eyes (sorry, bad pun)

I still say it was the healing powers of the dolphins!

Jeff, great news!

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(21 replies, posted in Introductions!)

Kara, are sirspheres or theraspheres an option for your mom?  they are specifically aimed at the tumors in the liver.  Originally this was for mets from colorectal cancer, but they have been having luck with CC

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(11 replies, posted in General Discussion)

Charlene and all other caregivers:  VENT AWAY!!  you have the toughest job of all!

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(11 replies, posted in Grief Management)

Thank you Jenny.
I had a cholecystectomy for gall stones, simple, routine, nothing out of the ordinary.  It seems to me that CC is always found by accident since there really is no test or screening. 

Don't live with regret, I always tell my 11 year old son (I'm a single mom) that he will always be in my heart and I will always be in his.  I am sure that is the same way with your husband.  He knows what you wanted to say because you're saying them now.

By the way, Australia is one of my most favorite places on earth, I've been twice and just loved it!

Barb (aka, the commander)

Dear Rebecca,

I am so sorry to hear about your husband and wish I had some definitive encouraging news to share, but the truth is that this cancer is so rare that each case is different.  I started out with Gemzar and at first it looked like my cancer had slowed down, but then the next scan it sped up and spread to even more places, it's just so unpredictable.  There are a few on this board who have better experiences, others who have worse, each is individual.  Do your research, have you spoken to an interventional radiologist at all?  Your husband could be a candidate for sirspheres or theraspheres which might shrink or at least slow the growth of the tumors in his liver if that is where they are.  I am making that assumption based on your saying he was stage 4 as the liver is the most common place to spread.  I had sirspheres about 6 weeks ago, the jury is still out as to whether they worked.  When it appeared the Gemzar wasn't doing what they wanted I was placed on Oxaliplatin and Xeloda (an oral form of 5 FU), because of side effects they took me off the Xeloda and put me on the IV form of 5 FU.

My advice to you is to do as much research as you can, ask questions and more questions.  Get a second opinion, it is always wise in this kind of situation.  Most of all, value each day as the most important day of your lives. 

Barb (aka, the commander)

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(11 replies, posted in Grief Management)

Please Jenny don't beat yourself up, this evil cancer is a sneaky thing with no tests or signs.  It is so rare that they haven't invented a test for it, much less a cure.  I am 52 with the disease and while I don't like it, I have come to accept the fact that I have it and there was nothing i could do prevent it.  I had just had gall bladder surgery 9 months before and there was nothing. 

God bless you and I will keep you in my prayers.

thanks to all.  I am  scheduled for an EGD next week, so i hope to find an answer.  i am leaning toward high end obstruction or bad reflux.  I don't really care what it is, i just want it to stop!

well, news not bad, not great but ok.  no shrinkage of tumors in the liver which is telling me that the sirspheres didn't quite do the job.  There was some shrinkage of the tumors in the lymph nodes which means the chemo is doing it's job.  My blood count (hgb) is down to 9 and my white ccells are down to 3.  He thinks I may be obstructed so I will be having an EGD soon to see what happens

Thanks Kris, sometimes being a nurse is a curse because there is all the stuff I know that could be wrong.  No clue from the doctor, he thought it might be the Xeloda so he took me off, but 2 weeks out it is still going on.   As far as my weight, even my sister in law got into the act telling me "aren't you glad you had weight to lose?"  uh, yeah, sure.  When I told a friend of mine she sent back a fake ad:  Lose weight with no dieting, no exercise, eat whatever you want, just get cancer!

Luis is doing fine, considering all that is going on with him.  He's been dealt a cruel blow to be sure, abandoned by his birth mother, living in an orphanage, he is bipolar, now his mom has a very bad disease and could die.  Fortunately he has used school as a diversion and is making the best grades he's ever done, we have a wonderful group of friends who have taken him under their wing and have really helped me out by practically adopting him themselves.  On the down side, it is tough being a single mom and trying to maintain discipline.  I am probably spoiling him rotten but I don't have the physical or mental stamina to do the everyday battles that parents face, so I do the best I can.  That being said, he is a sweet kid who is well behaved outside the home.  I really think that some of his behavior issues at home are his way of telling me that he still needs me and I can't leave.

the last few weeks have really been tough, more pain but the most aggravating thing has been the vomiting, almost every day.  I don't get nausea, just the urgency you feel in your cheeks just before you're about to hurl and then I lose whatever meal(s) I've eaten in the past day or two.  I am really wondering if I have some kind of high up obstruction, I am passing gas and although somewhat constipated I am still able to move my bowels.  The stuff I am throwing up is often undigested, even the stuff I ate up to 24 hours.  Needless to say my appetite has not been great and I am losing more weight.  I joke that I have finally reached my Weight Watchers goal but in reality this is no laughing matter.  Anyone else experience this?  It just gets so depressing, especially since people who haven't seen me for a while say how good I look (yeah?  lose 45 lbs in less than 3 months!)

On the other hand, I had my post sirspheres CT scan last week and will be getting the results from the oncologist tomorrow, don't see the interventional radiologist until the following week.  The way I have been feeling does not give me a good feeling about the outcome, but I am hoping for the best.

Barb (aka, the commander)