1 (edited by JeffG Fri, 07 Nov 2008 09:54:35)

Topic: Buddist Wisdom Quote

Isn't it a shame?  If all humans could only understand this one basic sense of universal responsibility quoted below:
(QUOTE)

As human beings we all want to be happy and free from misery.
We have learned that the key to happiness is inner peace.

The greatest obstacles to inner peace are disturbing emotions
such as anger and attachment, fear and suspicion.

While love and compassion, a sense of universal responsibility are the
source of peace and happiness.
(UNQUOTE)

Dalai Lama


Love and compassion to you all !  We can all interpet the effects of this quote so much differently and deeper.  Maybe less pollution, stress, and disease; health for all. 
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Buddist Wisdom Quote

When my mom was diagnosed with cholangiocarcinoma we supplimneted her treatments with the powers of thought and attitude. we discovered this man, Masaru Emoto, and his website, http://www.masaru-emoto.net/english/e_ome_home.html. It is so inspirational to read about his work.

We desided on tyhe treatment words of love and gratitude and they have been a part of my life ever since. I high recomend that everyone find themselves in a few powerful words and live by them as often as you can, letting them become part of you can do nothing but good!

thank you for sharing your words!

laura

Re: Buddist Wisdom Quote

Hi Laura, will look at the site more closely and want to thank you for posting it.  Please, feel free to share with us more.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Buddist Wisdom Quote

Hi Jeff, (and everyone of you)
I am new to this site and this is my first of many posts  hopefully.  I discovered this site just a week ago.  Although my family has been dealing with Cholangiocarcinoma for over a year, I really couldn't find a support system(although I was focusing more on Bile Duct Cancer support groups, and not the lovely technical  term for this beast of a disease)  My dad, Roberto, 73, was diagnosed last July (07) with the cancer, after we discovered his whites of his eyes were yellow.  Now in retrospect(ofcourse) there were many other signs- on a family vacation to Florida that prior April, I thought it strange that he would tire after an evening walk with his 6 grandchildren.  Usually when we would come down to their vacation house in Florida, he would constantly be doing a project, to keep the house looking nice.  That vacation he said, "what is the point we only are here 2 weeks a year."  This is a man who born in raised in Italy came to America with a third grade educaiton and went on after working sometimes  3  jobs at a time to learn the trade of plumbing and built a huge business with the sweat of his brow.  He refused to retire, and he often said "if I cant work anymore, I will be 6 feet under".  So suddenly, fast forward, my mom, my two brothers and I are sitting in a waiting room at Evanston Northwestern Hospital last July as my father has an ERCP preformed on him to see if the "growth" is cancer.  It could have been a gallstone, or an ulcer(yada, yada, yada) but I knew(you know when you just know?)  So out came the dr. with the news,  and that started the nightmare.  I will say after lots of research and this amazing site, that we did did get lucky b/c on August 17(07) my father had the Whipple performed successfully.  There was no mets or spreading of the tumor at the time, there were 5 out of 9 lymphnodes.  The whipple kicked his butt, but he was a trouper and was back to work(cause that is what my dad knows to do) after 2 months.  6 months of Gemzar and surprise, surprise, "suspicious spots" were found on his lungs in July.  They were spoted in March, and then there was change and a bit enlarging in July, and then some more change in August.  So not that I am the expert, no one should ever have to be, we are fairly certain they are cancer. (3 nodules, as of late august measuring in the mm) We haven't been back for recat cause the Oncologist told me over the phone that if they are cancer and they probably are, that there is nothing they can do.  Chemo will distroy his quality of life.  She estimated 4-6 months for him to live.  I  listened to her, and decided not to take her word. Which brings me to you Jeff- I love your attitude, I don't believe any human life can be part of a statistic.   In my fathers case, we tell him nothing of statistics, he feels good(well good enough for 74)  He has his weight back, he has a decent appetite, works sometimes, not always now physically, but he runs the company from his home office with my mom.   He is fairly reasonable when it comes to taking my dietary supplements(I am a self educated nutritionist now) he cut out coffee, most redmeat, eats tons of fruits and vegetables(one huge carrot everyday) Wine?  he will never cut out his 2 or 3 glasses a day(hey, he's a dago) Wow, sorry, long post, hope I didn't bore anyone.  My heart goes out o anyone fighting this disease.  I am a single divorced mom who father has done so much for me......for everyone out there, where there is life there is hope, thanks for listening.   Barbara

The  Lord is my shephard

Re: Buddist Wisdom Quote

Hi Barbara and welcome to the best little club in the world that no one wants to really join! We are from Phoenix, originally Milwaukee, and Teddy is a fabulous Sicilian! He had a Whipple 3 years ago and I have written extensively about it so won't bore everyone with that again. You can look it up under "Lainy".
We believe here in getting other opinions when we do not like the ones we are getting. Some have been known to get 3rd and 4th opinions. If your dad is  doing well you might want to re consider. We also will not do the chemo  but would want to know what someone else would say. Teddy's, returned in April  where his duodenum used to be. He went through 5 weeks of radiation and in December will have the miraculous cyber knife. He is doing good. He also gave up coffee and alcohol but NEVER the pasta!!! I also had searched and searched on bile duct cancer until I found this site and realized it is all Cholangiocarcinoma. Something we know so little about that even the computer programs insist the word is mispelled!!! Please keep us posted and if you wish feel free to e mail me.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Buddist Wisdom Quote

Hi Lainy,
Thanks for responding.  Wow, Whipple 3 years ago!  That in and of itself is a success!  I'll never forget sitting in the Oncologist office last September and her saying "very few survive a year after the surgury" with Cholangiacarcinoma.  I nearly lost what little I had in my stomach and right then and there I realized our oncologist was really negative.  Some may say realistic, but I don't know how and will never know how a cancer patient has a fighting chance with a defeatist attitude.  With this particular cancer we all need a bunch of things in our corner- good doctors, who are willing to stelp outside of the box(and stats)good diet, good attitdude and the GOOD LUCK! I was unclear in my original post, we are going for  a second opinion.  This Thursday we are going to Cancer Treatment Centers of America, there is one in Zion Illinois which is only 45 minutes from where we live.  I have done a bunch of research on them, and I like that they treat both chemically, nutritionally and spiritually.  My family really needs the latter of those three.   We were at a great hospital for the Surgury, our surgeon went in and got that bugger tumor out and resected my dad in less then 6 hours, the recovery was rough, but doable.  My dad has issues only sometimes with what he eats ie no more spicy food, nothing heavy at night.  He has had a few hernias removed since the surgury and he latest trauma was a bacterial infection from the surgury which landed him in hospital.  So it hasn't been completely rosey(not with this cancer, obviously) but we were getting by.  What I cant do right now is listen to an oncologist who is throwing in the towel, and if the next 2 or 3 Drs. I talk to do the same, I will find someone who doesn't.  I believe, where there is life there is hope, and cancer cells dont always have to continue to grow.  Teddy seems like a great fellow piasano!  What part of Italy does he originate from?  my dad Rome.  We just sat down the whole family-including 6 grandkids and had our Sunday pasta lunch.  We get together a lot more than we used to, which isn't always easy with kids and all their activities, but we all Know how IMPORTANt it is now.    Gosh, I feel better allready talking to someone that understands this beast CC. Thanks so much, Barbara

The  Lord is my shephard

Re: Buddist Wisdom Quote

Barbara.... Thanks so much for sharing your Dad's history, quite a remarkable man!  Quite obvious as well, a remarkable daughter who cares and loves her Dad deeply.  I shall not want.
May the Blessings Continue.....
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Buddist Wisdom Quote

Barbara.....I also would like to thank you for your story re: your experiences with CC.  Stories such as yours help us all to better understand this cancer, how it is being approached and how it is being treated. I would also love it if you would share with us your upcoming visit with the Cancer Treatment Center of America.  Good luck and I am sending tons of good wishes your way.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Buddist Wisdom Quote

Yeah, Barbara! I feel so much better now that I understand! I just switched Oncologists as we had a fantastic man and he retired in June and a youngster took his place that I just did not feel secure with. I want aggressive as nice does not kill cancer! So we got our wish and another one from the same office is seeing us Friday. He is also rated in the top 10 in Phoenix. I tell you we have so lucked out as our Oncologist, Urologist and Radiologist are the BEST! Would you believe they even call each other!!! Unheard of! The only RX Teddy takes is
1 Prevacid each morning. He too gets upset sometimes from acid/spicy foods.
Except pasta! He can even eat a HOT Italian sausage. Teddy also has landed in the hospital with infections twice now. Guess its just the nature of the beast.
He has a second problem as the mass is pushing against the right ureter and crimped it. He has to go in every 2 months and have an internal tube changed so he can "pee" properly and not loose the right kidney! BUT, he is here and he is living a pretty good life and his Attitude is superb! Teddy's family is from Aspera Sicily. They are Sardina. Say, did you ever venture to Milwaukee for Festa Italiana? We are second marriage now 14 years. Teddy has 7 kids and grandkids coming for Xmas this year from Irvine Ca. and of course he will make his Calamari Marinara and his Octopus  Salad. Jeff, wants some of the calamari but I forgot to tell him about the octopus salad. It grosses me out but his kids and grandkids were raised on it. Feel free to e mail me privately if you wish. Oh yes, T sister Maria is married to the lead tenor of The 4 Lads!!  I freaked out as I had such a crush on them in high school!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Buddist Wisdom Quote

Laura,

I read Emoto's book and thought it was fascinating.  My sons looked at all the pictures and were amazed, they wanted to do their science projects on this.

Right after I read this book I took my labler and put "love and gratitude" in the glasses that I drink water from all day long.  My sweet husband (ever patient) said, "what have we been reading"  (haha).

I'm looking at love and gratitude all day long.

Stacie

Re: Buddist Wisdom Quote

Thanks for all your responses, you made my day.  I have been doing this cancer thing since last July, essentially alone.  I love my big Italian family, but they are like the denial family.  My brothers say things like, "maybe the tumors in his lungs are benign" or "Barbara, you are so negative" ?? My mom is super fragile emotionally, so I can only tell her things in increments.  I know she gets the seriousness of this cancer, but we just dont talk about it often.  My parents are planning a trip to Italy this January, which I am hoping they can make, b/c I want my dad to go to his country one more time, but in my mind, I know he may be doing treatment and may not be able to, or feel up to it. I believe in the power of prayer though, and I am praying that on Thursday those nodules haven't grown or atleast not much.  Just want my father to see Italy again.....America is his home and has been for 45 years, but Italy is his country.   I will put my new CC friends in my prayers tonight.  Peace be with all.
Barbara

The  Lord is my shephard

Re: Buddist Wisdom Quote

Lainy,
Can you give me your regular E mail.  I would love to exchange Italian stories with you.
Thanks

The  Lord is my shephard

Re: Buddist Wisdom Quote

Barbara all you have to do is click on email under my name but it is:
Lainy@wbhsi.net

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Buddist Wisdom Quote

Barbara,

Hi, welcome to our little circle of friends. I lost my mom, Pamela, just over 3 months ago and I know how hard this cancer can be to wrap your head around. I am in Chicago, if you need anything or any help or just need to talk, please e-mail me. I put a post out there to see if people in the area want to meet in person but so far no one has replied, see:

http://www.cholangiocarcinoma.org/punbb … hp?id=2064

I hope your parents can make the trip to Italy in January. My mom was born here but she was Italian (Abruzzese) and my mom had gone to Italy before but she and her cousin had been talking about going to Italy together but they never went. She also used to make spaghetti for everyone once a week so we have lots of memories.

Patty

Re: Buddist Wisdom Quote

Hi Patty,
Thanks for the welcome note.  CC is such  rare Cancer and to find this community is so comforting.  Im so sorry about your Mother, how long was she sick?  Where treated? I would love to meet an get more details.  Im not too far from city, and am in area a lot because I work in sales.
By the way, my father was born in Rome, but he was raised in a tiny mountain town in Abruzzo!  Beautiful part of the country.
Barbara

The  Lord is my shephard

Re: Buddist Wisdom Quote

Barbara,

My mom was treated at Loyola, she was diagnosed in Dec. 2007 and fought it for 8 months, she was 66 years old and also had heart problems and was in general poor health so she was not a candidate for any clinical trials but she did have a resection (thank you, Dr. John Brems) and I am certain that is the only reason we got 8 months with her.

I think it's good you are going to Cancer Treatment Center, I looked into it but the problem was my Mom never really recovered from the surgery enough to be offered much else in the way of further treatment, she was just too weak, she got a few weeks of radiation and chemo but even going to the oncologist's office a mile away was very tiring for her. She also ended up back in the hospital with fevers/dehydration 3-4 times. She spent 6 weeks in a rehab trying to get some muscle back but still needed a wheelchair after she got out. Still, the time we had with her was quality time and she was able to enjoy herself and laugh with us and it sounds like you are savoring the time you spend with your Dad.

I think there is reason for hope, there is always research being done. Many people don't know that Walter Payton died of the same cancer and his family sponsors an event to raise money, I found out about it too late to do it this year but would like to do it next year, see:

http://www.payton34.org/run/default.aspx

Patty

Re: Buddist Wisdom Quote

Patty,
I am so sorry you lost your mother so quickly and she was so young.  I know the cancer and then the surgury can be debilitating.  My father had  3 infections with his stent that was put in to help the Bile Duct, and so leading up the surgury he was really weak.  It took a while to recover from the surgury-(well enough to function) I don't think he will ever have the energy, appetite, stamina he had before he got ill.  Did your mothers cancer metastasis?  I think that is one of the big issue with this type of cancer, and quite frankly, I think so so much more research has to be done with this cancer.  I really thought  our Surgeon (Dr. Bilamoria, Evanston Northwestern was amazing) and I like our Oncologist enough,  but she just hasnt seen a lot of this rare cancer, and when the Genzar clearly didn't work on keeping mets in his lungs at bay, she had no other options.  So we will see what happens Thursday at CTCA.  Im not sure I want him to do chemo if it is just going to destroy the quality of the rest of his life, now if there is a chance chemo could stop the growth, I think we may consider.  I just liked CTCA when I called.  They didn't freak when I said Cholangiocarcinoma(what a mouth full!) and they deal a lot in Palliative care......I liked that they treat spiritually as well, b/c my faith has kept me going through all of this, and I need my parents to have more faith.  I would love to meet, do you live in Chicago?  I am about 20 minutes north, Ill send a note to your E mail.
Thanks
Barbara
PS dreary day isn't it?
PPS I know Walter Payton died of CC, but what is interesting many websites state he died of Pancreatic Cancer.

The  Lord is my shephard

Re: Buddist Wisdom Quote

Welcome Barbara...
...and I'm sorry that you have had to find this site, but as you have learned, you are among the best.  Lost my beloved dad to cc 15 mondays ago. 

Was interested in learning about Walter Payton...one of my favorite Bears.  When I was advocating for dad between oncology/chemo nurses who understood dad had cholangiocarcinoma  and the nursing home staff, where dad stayed briefly, who kept calling it pancreatic cancer.  The Nursing home  staff told me that it was the same thing...just a question of semantics.  It was a time to pick battles so I just let it go.  Fortunately the oncologist and chemo nurses were very open to my questions and really helped me out.  I'm not surprised that there are reports, etc that identify CC and pancreatic cancer as one and the same.  We are further fortunate to have such a forward-thinking website as this one is, that does so much to make health care providers aware of this horrid cancer.

Wishing you and your family the very best.
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Buddist Wisdom Quote

Well, we frequently use humor here to get us through the day so maybe when people ask us what kind of cancer we can answer, "The unpronounceable kind!"

Re: Buddist Wisdom Quote

Hi Jolene,
Thanks for the note, I'm so sorry you lost your father.  I am a "daddy's girl" too and I can't yet imagine the thought(dont want to imagine) of losing my dad.  I am an only daughter, and my dad took such good care of me all my life, even through my bad marriage and divorce, and now I am honored to take care of him.  I do it with all my heart and soul. 
I think the reason It took me 16 months to find this site is b/c the Oncologist treating my dad was calling the cancer Bile Duct Cancer and not Cholangiocarcinoma.  It wasn't until I was on Cancercompass, that someone wrote in talking about this organization.  Im starting to understand, if a hospital doesnt see a lot of a certain type of cancer, they aren't going to do any research.  The hospital we are(were) being treated at basically said the cancer metastasized and therefore the chemo(gemzar) didnt work, so there is "nothing else we can do."  The Oncologist gave him 4-6 months and told me to schedule a follow up in a few months.   Im not mad at our Oncologist, it is just that this particular hospital isn't focused on finding a cure or even palliative care for this cancer, so I will search till i find a hospital that is interested.  As far as the confusion with Walter Payton,  I think that is just awful to lump together the two cancers when they are different and the treatments are different.  Infact I was a big Walter Payton fan and up until my father developed CC, I always thought Payton died of Pancreatic Cancer, b/c that was stated in the media.  CC too hard to pronounce or Bile Duct so rare that it was easier to call the cancer something else?
Barbara

The  Lord is my shephard

Re: Buddist Wisdom Quote

Barbara....I am hoping not to interfere in your discussion with Jolene however, I wanted to thank you for bringing up a few good points one, being that bile duct cancer is not always given the name of Cholangiocarcinoma and therefore many people may not find us.  This again demonstrates the urgency of addressing all physicians and cancer centers treating CC patients in order to spread the word of our Foundation.  The other point you are making so well is the need to advocate for our loved ones which you are doing so well by searching out different opinions for the treatment of your Dad.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Buddist Wisdom Quote

Yes, I do believe whole heartedly, if one isn't happy with a cancer diagnosis, or treatment, or "life expectancy" of a loved one, seek out another Doctor.  There are so many cancers out there, that it only stands to reason at times that one hospital doesnt have as much experience, or research, as another hospital.  In our case, atleast based on some phone conversations and e mailing CTCA has treated lung mets with CC and is willing to try to help my father.  Our current Oncologist said to go home  and enjoy our time together.  I am not saying that wont be what we will untimately do, but I need to have more options and information. I couldn't forgive myself if we didn't atleast try.....
On the topic of finding this particular organization, when I googled Bile duct cancer and Bilary cancer, I never found this site.   Pancan came up often, and some other support groups, but nothing as thorough as this.   With only 600 cases(is that correct?) diagnosed a year, it is going to be difficult to get the awareness out there, but I am certainly willing to lend a hand in doing so.
Peace To All

The  Lord is my shephard

Re: Buddist Wisdom Quote

I have to agree. Until my family actually had the name Cholangiocarcinoma to attach to this disease, we did not find this site either. We found it 2 days after Jim passed on. Most people have never heard of it much less can they pronounce it or spell it correctly! It has still been a God send to me, however, I too wish we could get more awareness out there to reach more of the people who need the support & knowledge of all the wonderful people here. I am doing everything I can to make any one who will listen more aware of this type of cancer & where & how it develops. I am begining to think that although it is rare & one of the worst cancers to fight, there are more cases than any of us realize. Not to mention how many unknown or misdiagnoised.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Buddist Wisdom Quote

Hi Darla,
I thought I'd tell you, My family went to Cancer Treatment Center of America in Zion Illinois today to get a second opinion for my dad's mets to the lungs and the the ONC kept calling the cancer -" Bile Duct Cancer."  So I said, "do you ever refer to it as Cholangiocarcinoma?"  and the Doctor(who I really liked) said, thats the technical term, and he usually didn't refer to it with patients that way, and so I did tell him about this organization, and how I didn't find out about it until I started googling CC.  Also, I asked how often he sees this type of cancer and he said a few times a month only, and this is a really big hospital.....I do think you are correct, that there is misdiagnosed cases.

The  Lord is my shephard

Re: Buddist Wisdom Quote

Interesting points by all of you.  I do believe that a few patients per months in a major hospital is a about the norm although, you also may be right with your assumption that some people simply, may be misdiagnosed.  Interestingly, during my attendance at different symposiums such as ASCO, or ASPO, etc. some physicians from South America were adamantly stating that Cholangiocarcinoma does not occur on their Continent.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER