I'm going to a sacred place and i will send out a prayer of good health and happiness to all the CC family. My husband and i are going on a 3 week river trip down the Grand Canyon- one of the Seven natural wonders of the world!
We leave this morning to drive to AZ. I will be thinking of everyone and wish you a great october.
XOX

Run Complete! I got first in Tu Tu division and my friend got second! (ha ha there was no one else in tu tus ;-)
I cant figure out how to post a picture... ;-( anyone?  Lainey, i am happy to email you a pic so you can laugh more of your XXX off ;-)  Monday i can ask Rick to help me post pictures unless there is another way...
xox to all.

Today would be my mom's 90th birthday... it's a bitter sweet day. I have raised just over $2000.00 in just over 2 weeks (to date) in memory of my mom. My friend and i have spent the day making tu tu's in CC Fundation colors and are decorating shirts to wear tomorrow for the Hunstville Half Marathon tomorrow.... (please don't sue me for using the CC image..... we want to represent!) Pics of finished product to come if i can figure out how to post. We are not going to win so we might as well have fun and bring some awareness.

More later!

Nine more days until the half marathon i am running in memory of my mom, and i have raised my goal for the second time! I met $1800.00 and now up'd it to $2000.00 ! I'll keep you posted!

I feel like a kid at Christmas! Jumping out of bed in the morning to check my website! $50.00 this morning_ whoo hooo!

Lalupes- i really love the Blooming Great Tea Party idea! My mom would have loved to attend that one ;-)

You mentioned your sister loved to garden... another idea i have had rolling around in my head was doing something like memorial seed packets...... Something like Sandy's (my mom) Seeds for Hope- or something... Its an idea that involves more thought... but if you have any interest in collaborating across the pond ..;-)

Have a good day.

Hello Everyone-

It's been a while since i've posted , since August 2nd when my mom passed to be exact...... seems like a life time and then some.

Fundraising is in my blood....(from my Dad) and from the moment my mom was diagnosed with CC i knew that i wanted to help raise funds to fight this cancer. There was too much going on when mom was going through treatment and fighting..... A month after she passed the need to DO SOMETHING took hold.
I am tickled to have raised the amount that i have in such a short time! ($1595.00 in less than 1 week!!) but still hope to raise a LOT more!
People DO CARE, and even in these hard economic times, people GIVE! People don't give to causes, they give to PEOPLE WITH CAUSES. We all have a cause... SHARE IT. People care. (ok, i' ll get off my soap box now...)
Just wanted to share.... you can check my fundraising www. Lance said it was not about the Bike, well i agree, only swicth it to run... its about the $ raised ;-) And i hope to raise a lot!

http://www.firstgiving.com/fundraiser/f … _sandyking

Thank you All for your un-ending kind words and thoughts.
Does anyone know the requiremnts to Inlcude the Cholangiocarcinoma Foundation for donation in Obiturary?? I put a ? into Stacey but have not heard...

Thanks again- i am at JFK  on my way home to my family, but i have been carring my family (you all!) with me all along. Thank you /

My dear amazing super mom passed away on her own terms  and her own timing late last night. It was all going so quickly but no one thought it would be THAT soon.... as my brother said, she has been one step ahead of us the whole time and we just never caught up. It is a blessing that she could go quickly, and i truly believe that she wanted to protect US from suffering through her decline any further.

She is now making heaven a more beautiful place with her gardening and probably offering everyone her yummy minted lemon iced tea and a home made ginger snap or brownie.

Marion-thankyou for your response!  i may have miss spoke,not sure if semi responsive is a good word choice, (although i am not there, just responding to my inturpretation of what my siblings have said). Hospice did come today and helped  my mom to the bathroom etc etc...so despite my personal worry... would they not have directed them(siblings)  correctly?? I hope so! although i dont know why i had this worry?? I will alert them further. thank you.

10

(6 replies, posted in General Discussion)

Hey-

well in your situation i am not sure what i would do... i feel like i might have the same question. In my situation, it's my mom. And while i have taken  A LOT of time off of work to visit with her.over the past 8 months,.. (i live in the west and she the east) My job is such that it allowed me the freedom to take the time and not get paid, but keep my job. HOWEVER, my siblings and i kept reminding each other that keeping it normal (my mom's life) was also very very important to her state of wellbeing. I think my brother said it best 'stop treating her like a patient' and let her live!
it's hard... because i also strongly believe that you should take each opportuntity you are given to be with your love. I guess finding that balance is the key. I would agree with Lainy (from experience) try to keep it as normal as possible. and IF that day comes when they say hospice- act accordingly. I also sgree that it is HIS choice as well as yours... i know it irked the hell out of my mom to be fussed about, so not having Donny's OK if your decision could be a bad thing. Good Luck- he is lucky to have such a devoted and passionate g=friend!

My dear Mom went up to bed (nap) yesterday at 3pm and basically she has been in a sleeping , semi responsive state ever since.  She is a few steps ahead of us on this as we just were getting teh 24 hour care in place- it will start at 8am tomorrow. Hospital bed ordered and will arrive tomorrow. Dining room cleared out today - it actually was my parents bedroom back in the day when all the kids were in house. This is an old NE farm house- dining room is nice and calm room.. my dad spent his last years  sleeping there too... we did talk about my mom moving downstairs last week and she was OK with it. We just didnt know that we might have to call the fire dept to get her moved down stairs! Steep stairways. My poor dear siblings have been amazing taking this quite sudden and alarming change on before the expereinced help can start. I was under the impression that Hospice would be there 24/7= but i guess not. They are struggling to know whether to try to wake her to giveher her meds.. and i worry about her being able to swallow adaquatly, among the other 1000000 things i am worrying about.
I will be there friday am- and i am scared about everything after that.

Thank you ladies for your support.
Lainy! I saw you went on a little adventure- i hope you had a blast. You were missed here!

hello dear friends:

i have not posted in a while about my dear super mom, but i have been checking the site to try to keep up with everyone here. NOt a day goes by that i dont think about what everyone is goinhg through and i wish us all strength to get through it!

This rollercoaster (it's more like Space Mountain!! whizzing along up and down in the dark!) continues.

For Ups- early in July my family all had an incredibly wonderful time together on Cape Cod. It was about 2-3 weeks after my mom went on Hospice, and she was just figureing out meds to help with Nurapathy and itching. She got some nerve pain meds and boy o' boy the positive change was seen immediatly! She was able to get a good nights sleep. She was out and about in her garden, at the Cape my mom went out on our boat, did some fishing and ate lots of yummy food with family. She looks good, sounded good and felt good. (all relative)
As soon as she got back home things started to go down. She got constipated, and then after a few days of getting everything going again... the pain inher tummy got worse. Hospice said it was due to all the laxitive activity and it 'should' subside. However, it did not, and her appitite went away. It happened so fast- within 4 days! We all were very concerned about her appitite- or complete lack of... becasue for most of us its impossible to think that you could have zero appitite for days on end... but then again we dont have cancer messing up our GI area. I had a good conversation with my moms medical nurse and he said that it was both Physical (all teh stuff in her stomach) and chemical- chemicals being realesed to her brain that is telling her she is not hungry. AND that we should not bug her so much about eating.... that drinking is more important. This is HARD.( I do want try to get some of those suppliments that were just noted on this board) For pain my mom just started on a Morphine Sulphate (she was just taking oxycodine) and the last few days have been horrible i guess (i am not there with her right now- siblings are) The morphine does indeed take the pain away, but it  also took my mom away..... we understand that there is a getting used to period with the morphine..... but ..... it is here that i question Hospice' MO on medicating someone into a stuppor. We are now looking at getting a live in care person as its not safe for mom to be alone when in this state...... I am hoping that she will become less foggy and slow in a day or so......

Well thats how our ride has been this past month..... I am grateful we did have such a wonderful time together as a family when mom was feeling good. I would say to everyone- carp diem! (not a Latin scholar, but pretty sure its seize the day or moment-take advantage of every good moment with your loved ones while you can

Thank You! (my mom always sends Jackie Lawson Cards ;-) That is a beautiful one!

Hello-

I guess i am up earlier than anyone else so i will be the first to say i am very sorry for your family's recent news with your mum. You will get tons of good advice, answers and support here, so while none of us  particularely want to be on this site, i can personally say these folks are the most careing thoughtful and informative around. They speak from experience.
And to answer your question, speaking from my moms diagnosis expereince... yes it takes a long time and they use words like inconclusive. For my mom it was from End November til week before Christmas last winter.... going from a UTI, to gall stones to pancreatic cancer to finally CC. Her also is inooporable and she had 2 stents put in as well. They later replaced teh bile duct one with a metal one and took out the 2nd one all together.
It also seems like forever until she started Chemo. She didnt start until Feb. Its really hard to want to start 'doing something' to fight this thing and be told you have to wait. I cant speak to the need of another PTC procedure....hang in there! I found a lot of comfort in watching the Webnar on this site  by Dr Ghassan- i think it was the Reveiw of CC research??? It explained to me how the diagnosis is more an elimination of what it is not.... check out the video..

Well that is what i can offer you... be brave even though its really hard. i am sure everyone else will offer words to you too...

Best,

Love that dream Julia! Susan must have had,  and still does, a great sense of 'being'. I think it's great that she wanted to go with you to deliver the cards.

My Dad passed away in 2005, and we realized  that his 'Totem' was a Hawk, because shortly after he died, we (family) went for a walk in the woods along the river that he so loved, and this Hawk was just flying along with us. At various times hawks have swooped down in front of us.. and at my wedding- during the ceramony, 2 hawks circled above- not sure who the seocnd one was....... my best friend and i decided it was her mom who had passed away too. ( i was unaware at the time but i have pics to prove it!) Just the other day, while riding my bike, Hawk was following me... and i got worried about my mom... (but all was status quo) So YES! They are still with us and make visits!

Hello All:

quick update on my super mom ;-)
After getting the news last week that her  Dr. felt there was nothing more he/they could do for my mom medically, as her cancer spread to her Omentum, we got signed up with Hospice- per his recomend.
I have heard interviews with Dr. Ira Byock  http://www.thebestcarepossible.org
and know a bit Aand like his philosphy, and i also understand that hospice is meant for more time than the last few days or weeks.... but i am still having a hard time coming to terms myself... In anycase, I will try to be as brave as my mom in the coming time period.

She just had her 2nd visit with great Hospice gal Peggy, who for now will come once a week. My sister met Peggy today and said she is very nice and easy to talk to (unlike Dr..grrrrr)
My mom has some swelling/possibley fluid build up and slight discomfort due to tumors in her stomach area.... Now that she is eating more (YAY!) there is less room in there, thus the discomfort. She also had a little bit of itchy and or tingly arms and legs.... we are thinking that is from the Chemo... nerve damage. Does this go away with time after chemo has stopped??

It is good to learn all that Hospice entails, and while i am not happy we are at this point.... i am grateful that Hospice is there and we are using it early.

Well, that is all for now, other than i am about to have way to many veggies in my garden, so if anyone in the Salt Lake City area wants some, especially when we go back east to visit ( i think my timing is off and i will be in full harvest mode when we are gone in July) .... let me know! I would love to share!

xo

Hi LeeAnn

my mom's Dr. recommended these 3 mushrooms specifically for CC type cancer: Shiitake (easily found in grocery and YUMMY) Maitake, and Reishi- which are more 'medicinal and easier to take in suppliment form. One of them does lower blood pressure, so consult your Dr. as my mom was already on blood pressure meds so they didnt want her to take more lowing '
agents'

20

(8 replies, posted in Introductions!)

Hi Kendra-

I have limmited experience, but we found with my mom's chemo, it was the cumulative amount after teh 2nd round that had more side effects, but oddly not immediatly after- (that was maybe due to steriods she took for teh 3 days immediatly following) Her pattern was feeling the worst about 4-6-7 days after the 2nd round. (She is 89!) But i think everyone is different and you have to be patient to see what pattern he has (if any)
Staying active is good- even at 89 my mom was more active than most 55 year olds! Always getting up and dressed and out of bed EVERYDAY.
On the flip side, she often was scolded by her dr's that she did need to rest a little when the chemo fatigue was bad. So her answer to that was take a 2 minute nap ;-)
Also, (and i think i need a disclaimer here: this is just info i have read, i have no idea if it is actually true or works and of course consult with your Dr first!!) We looked into a lot of different things and i read that some medicinal mushrooms (Maitake, Shitake- which you can get at grocery) and Reishi have some good effects on this type of cancer- actually my moms onc told us that the first visit. AND they have some anti chemo side effect, effects- if that makes any sense.

Thinking of you and yours, and Be Brave!

I am pretty lucky to live where i do, (good gardening) and i learned from any skills from my mom.
However, Marion- posting the pic on the site was ALL Rick's skills and talent. I fiddled around trying to figure it out for a while, but couldn't.... he was SO AWSOME to spend the time helping. One of the reasons this site is so beautiful.

Happy Summer Solstice Everyone!
I sent this virtual bouquet of flowers from my garden to my mom, and thought EVERYONE here should get flowers!

May this day bring more hours of lightness, peace and enjoyment to all.

picture of flowers

23

(18 replies, posted in Introductions!)

Hi Formydad-

I am sorry to hear about your dad. It sucks, to be blunt. But i think being able to 'talk' about it here helps. I can't really offer any great advice to you...as i am fairly new to this puzzle. (M mom was diagnosed Dec 2011) All these other folks are the 'experts' and we are so lucky to have them here.
I can say  that i understand the frustration in living far away from your dad. i am in the west and my mom is on the east. All the info i get is filtered through someone else, whether its a sibling or my mom. I too have a bit more of a quest for knowledge of excatly what is going on, even though sometimes the Dr's dont even know. I think everyone deals with sickness on different ways (refering to your brothers) My husband is similar to your brothers... he flat out has not wanted to see my mom (even though he loves her very much) while she is going through this. I think that it is just too hard for them to deal with and they cant get over their own fear and think beyond it. . That is just my armchair psyc. opinion. ;=) I do hope that your brothers come to terms.
My main offering to you is that YOU visit with your dad and mom as much as you possibly can, spend time with him now while he is feeling OK, as well as later. I have gotten this advice from folks here as well as friends and i have made a point to  try to go east about once a month.. (i understand jobs dont always allow for this, thankfully mine understands.) I dont want any regrets later about time spent. Well, good luck to you and your family. Best.

Thank you for your kind words and insight.... I appreciate it! you all are amazing!
I posted in another place, but my sister sent the below out to my family, maybe it will help....

Ecclesiastes 3:1–11

To every thing there is a season, and aa time to every bpurpose under the heaven:

2  A time * to be born, and a time to cdie;

A time to plant, and a time to dpluck up that which is planted;

3  A time to kill, and a time to heal;

A time to break down, and a time to build up;

4  A time to weep, and a time eto laugh;

A time to mourn, and a time to dance;

5  A time fto cast away stones, and a time to gather stones together;

A time to embrace, and a time g* to refrain from embracing;

6  A time to * get, and a time to lose;

A time to keep, and a time to cast away;

7  A time to hrend, and a time to sew;

A time ito keep silence, and a time to speak;

8  A time to love, and a time to hate;

A time of war, and a time of peace.



Or, if you prefer a more modern version:

The Byrds: http://www.youtube.com/watch?v=V6jxxagVEO4

25

(14 replies, posted in General Discussion)

Dear Mary-

So sorry for your loss. It's hard. My sister just sent the below to our family... I hope it brings some comfort to all going through this......  xox

Ecclesiastes 3:1–11

To every thing there is a season, and aa time to every bpurpose under the heaven:

2  A time * to be born, and a time to cdie;

A time to plant, and a time to dpluck up that which is planted;

3  A time to kill, and a time to heal;

A time to break down, and a time to build up;

4  A time to weep, and a time eto laugh;

A time to mourn, and a time to dance;

5  A time fto cast away stones, and a time to gather stones together;

A time to embrace, and a time g* to refrain from embracing;

6  A time to * get, and a time to lose;

A time to keep, and a time to cast away;

7  A time to hrend, and a time to sew;

A time ito keep silence, and a time to speak;

8  A time to love, and a time to hate;

A time of war, and a time of peace.



Or, if you prefer a more modern version:

The Byrds: http://www.youtube.com/watch?v=V6jxxagVEO4