Re: Brother diagnosed 2 months ago

Dear Suzanne,

So sorry to hear of your brother's passing.  Know that you are in my thoughts and prayers.

Love & Hugs,
Darla

"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: Brother diagnosed 2 months ago

Dear Suzanne,

I am so very sorry indeed to hear of your brothers passing. Please accept my sincere condolences. I know that right now there are no words that will help ease the pain that you feel but please know that my thoughts are with you and your family right now.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Brother diagnosed 2 months ago

Oh Oceangirl,

I am very, very sorry.  Nothing I can write will make this easier or take away the sadness right now.  I believe that feel him with you.  I know you will be busy looking after each other and his son but please look after yourself too. x

Clare

In the stars now . . . .

Re: Brother diagnosed 2 months ago

So sorry to read this thread and see how fast things went. My most sincere condolences on your loss.

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Brother diagnosed 2 months ago

Thank you all for your condolences and kind words. My family is having a very difficult time. I appreciate any and all prayers and lots of strength for the hard days that lie ahead. You are all in my prayers too whether you are battling this disease or supporting and loving someone who is or who has lost their fight.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

I am so very sorry your brother has passed. I know what a shock it is to lose someone you love. My prayers are with you and the family.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Brother diagnosed 2 months ago

so sorry to hear of your loss. sad

Re: Brother diagnosed 2 months ago

oceangirl wrote:

My brother passed away last night at the hospital. He didn't make it to hospice. We are still in shock. It all happened so fast. I feel his presence and I know he is ok now and no longer suffering, but we are so sad and miss him so much. I have no words to describe it.



I'm really sorry.  I lost my beloved brother, 48, 2 years ago.  It was very unexpected - we didn't know he was ill (not CC).  I am glad you feel his presence.  There were things that came to me after he died that I knew were messages from him that he was okay.  Long story, but I'm always happy to talk about it.  Wear something of his.  I did.  I wore a favorite shirt, a favorite fleece and now his watch.  I'm typing on his old MacBookPro, which may outlast me.  The best advice anyone gave me is that grief is a process, not an event.  that is true.  There's no closure.  Life is just ... different.  But, he will be with you, every day, from here on.

Peace to you,

Lisa

Impatient patient.

Re: Brother diagnosed 2 months ago

Lisa, we have lots of believers here, welcome to our Believers Club.

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: Brother diagnosed 2 months ago

Thank you Lisa for your very comforting words. They really touched my heart. I am always amazed at how warm and loving virtual strangers can be in the face of tragedy. I read on this forum that some people were depressed and upset to read my posts of my brothers quick passing. I am so sorry for this, I never intended to hurt anyone by sharing my experience, and my brother would never have wanted that either. I even hesitated to post anything but the support here is so strong and so needed for all living with this disease. My brothers case was very different from most I believe. There are many wonderful stories of hope and survival on this forum and much useful information on how best to fight it. Do not give up. A positive attitude and seeking out all the information and doctors who are familiar with this diagnosis is very important. I for one will do all I can, in my brothers memory and honor, to raise awareness and funds for research and a cure for this type of cancer. God bless all of you in your fight and remember you are never alone in it.

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Oceangirl, please do not apologize for a thing, what you did was write the truth about a sudden and terrible loss. We are an open form and that is what has made us what we are. To me it is just as devastating to read about a loved one who has passed  as it is for someone to read the posted words, "you have CC".  As new members get used to us and read some past posts they will see we are a place of HOPE and MIRACLES and yes, even a lot of laughs. We all come here to feel we are not alone and this is sure the place to feel that.
I read LisaS post about her brother and if you girls are getting visits I invite you to contribute to the book we are writing about the beyond. I just posted about it again yesterday. I started a log of Teddy winks when he passed and in almost 3 years I have had 92 visits. When I feel lonely I read the log and then can feel him all around me. This may sound silly but I keep a bottle of Teddy's favorite cologne and once in a while give a spritz around the house! He always smelled so good.
Back to you Oceangirl, grief is such a personal thing and if it helps you to write to us, we are here to listen. If it would make you feel more comfortable about it you can always label the post with "Sensitive"  then the reader has a choice. We have posted that idea a few times but have not posted it in a while. SO you see, this is all ending up a good thing.

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.

37 (edited by LisaS Thu, 10 Oct 2013 11:37:57)

Re: Brother diagnosed 2 months ago

oceangirl wrote:

Thank you Lisa for your very comforting words. They really touched my heart. I am always amazed at how warm and loving virtual strangers can be in the face of tragedy.

Oceangirl,

Everyone is different in the way their grieve - although I stand by the grief is a process, not an event statement.  Don't be afraid to think outside the box.  I don't know your brother, but mine was a free spirit, a world class athlete (pro snowboarder) and lived his life between the mountains and beach (avid surfer).  In lieu of a traditional ceremony, we had him cremated and, although this was a bit weird for my 80-something parents at first, we sent small containers of ashes to his friends (who were all over the planet).  We asked them to scatter them in a place that had meaning to their friendship with Mark (my brother).  We asked for a picture of them there and for them to tell us what they did.  Well, it was amazing.  He is on every mountain he ever raced at and loved (several of those events occurred where they scattered ashes and told stories and caught the last ride of the last day of the season, went down and drank beer and told more stories - and there were a lot of stories about him), he is on every beach he surfed and loved.  Two different friends climbed to the summit of Mt. Hood (two separate climbs) and scattered ashes there.  He's in Alaska.  He's in New Zealand.  A friend of mine who didn't even know him took some with him when he climbed Mt. Kilimanjaro, which he summitted on what would have been Mark's 49th birthday.  Just because we thought it was a cool thing to do.  We, as a family, scattered ashes in an out-of-bounds area at Vail. He's at multiple spots at Lake Tahoe (and in Lake Tahoe).  He's at Telluride.  I started doing the JDRF RIde to Cure (he died of complications of diabetes) and his ashes rode with me around Lake Tahoe and a 100k ride in Nashville two weeks ago.  I scattered his ashes at the finish line of both rides, knowing he never crossed a finish line he didn't love.  I love knowing he's out there, in places he loved.  I feel him all around me that way.  Plus, I'm wearing his watch, typing on his laptop and wearing his favorite fleece.  In short, find what's meaningful to you and do it. 

I guarantee you, whether it's this damn cholangiocarcinoma or I get hit by a bus while I'm cycling ... I'm doing exactly the same thing when the time comes. 


I'm seriously happy to talk about this anytime.  My email is steglaw [at] yahoo.com and I'd be happy to give you my cell.  Like there is a band of people affected by cholangiocarcinoma, there is also a band I've called the lost sibling club.  There is strength in talking to those who have walked through that door before you.

Lisa

Impatient patient.

Re: Brother diagnosed 2 months ago

Oh, Lisa, what an absolutely beautiful story! You really did it his way and he loves you so much for keeping his memory alive all over the World.
I had Teddy cremated and when it's my turn I want the same but I want our ashes mingled. Then they are to go to some very dear friends in Milwaukee where we spent 2 weeks every summer at their Lake house and we made many wonderful memories there. So I said yes as they want to plant it in the back near the Lake. I told them not too close though as I can't swim! But I really loved your story!

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: Brother diagnosed 2 months ago

Lainy, thank you.  I actually started a blog recently and I wrote about both of my JDRF rides and what they meant to me.  Even though it's a different disease, maybe it would help someone.  Happy to have anyone read it.  Link is http://fiftyfine.wordpress.com (I think).  I don't know if you have to sign up to read it or not.  You certainly don't have to start a blog or anything.

Impatient patient.

Re: Brother diagnosed 2 months ago

WOW! Lisa, mighty impressive. I know how you felt with this amazing accomplishment as Teddy's Granddaughter just did a Marathon for Arthritis and biked from SFO to LAX....80 miles a day for 7 days. I watched videos they were taking and everything just took my breath away. 
I love your Blog and had to chuckle as you and your Sister sure look alike and your brother was one good looking Dude! Thanks for sharing that and you do have a gift for writing and humor~

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: Brother diagnosed 2 months ago

Hi Lisa,

Great blog and many thanks for sharing it here with everyone. I wonder if you wouldn't mind putting a link to your blog over here as well on the blog part of the site? That way your link to it on this part of the site won't get lost in all of the traffic that we get over here. Reason I ask is that I am sure that many of the other members would love to have a read of your blog as well!

http://www.cholangiocarcinoma.org/punbb … .php?id=31

Thanks Lisa!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

42 (edited by marions Sun, 13 Oct 2013 17:50:24)

Re: Brother diagnosed 2 months ago

Lisa...I too love the blog.  Incidentially, I much agree with you in re: to Lake Tahoe.  It is, in my opinion, one of the most beautiful places to visit in either, summer or winter or in between too.  Love, love, love the place; our family vacations there often sometimes for the weekend only.  Not too much of a drive (4 hours) for us, but Lake Tahoe continues to amaze us with its natural beauty.
Hugs,
Marion

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: Brother diagnosed 2 months ago

Lisa, thank you for your contact information. I would like to contact you. Your blog and experiences are amazing, so great of you to share ! Lainey, what is the book you talked about? Is it posted somewhere?

Mike, you will live on in our hearts and memories forever...

Re: Brother diagnosed 2 months ago

Yes, I will keep posting as I know this is going to take some time, thanks for asking:

Believers in the Beyond Written by CC Members
This will be a book with true stories of Member’s loved ones who have passed but make visits home.  There are many Believers today and I felt it was a good way to Memorialize our loved ones with all proceeds going to the CC Foundation for research, and if this takes off a very good way for PR.
We need a title and a formal Intro-any one, and I will keep tract of all suggestions. Any suggestions to help us are greatly appreciated.
Each Member will have their own Chapter. Start with a 40 line (no longer) Intro but as many pages you need for your Chapter.  Example below. Your Intro will be followed by your stories of visits. IF you are a CC patient and feel things have happened to guide you we will also take your guidance stories. I do feel we should not talk too much of what our loved one went through but concentrate on the fact they have not left us. I know my stories are very light/almost funny on some.
Please email your Chapter to me and I know this will take some time which is good so we accumulate more stories. I am looking at perhaps March to put it together.
So far I have the following for sure: Andie (UK), Darla (WIS), Me, Mary Lloyd, Clare (Scotland), Kris J., Pamela K.,
Members I hope to hear from:  Jennifer (Calgary), Gerardo (Ginger), Pam Cherbourg, Julia (UK), Lanny, Alla, Jee Young, Desiree . I know
there are more out there and I shall find you!!
MY INTRO:
In Memory of Salvatore D. Sardina        In our hearts forever.

Teddy and I met at a Night Club for older Singles (he was 61 and I was 54). He asked me to dance and soon another man I was dating walked in so one dance is all we had. His Sister came up to me and said, “My brother thinks you’re so cute, would you dance with him again?” I explained that I had started dating someone but thanked her. I dated the other man for 7 months and Teddy dated another woman for about the same length of time. We both broke our relationships and 4 months later re met in August, got engaged Christmas Eve and married in July!  He was a short Sicilian and I was a short Jewish gal and it was 16 years of a glorious and amazing honeymoon! My daughter called us the wedding cake toppers! I always describe Teddy as a man’s man and a woman’s gentleman. Sadly, in our 11th year of marriage he was diagnosed with Cholangiocarcinoma (Bile Duct Cancer) a very rare monster of a Cancer. Teddy fought the best fight he could for 5 years having survived an aborted Whipple surgery, a double e coli infection, then the real deal Whipple plus the return of the Cancer twice. After radiation and Cyber Knife there was nothing more that could be done and he passed on December 6, 2010. When I feel down I say to myself, “shame on you, you had for 16 years what most people never have in a lifetime”. That is the little trick but the biggest trick is that I am a Believer in the Beyond and keep a log of all Teddy’s ‘winks’ and in 3 years have 92 visits. When I read my log I feel so much comfort as it reminds me that Teddy, as he promised, is watching over me. The following winks are some of what I have been gifted and I hope in reading them, you will come to love Teddy as much as I do and will see that believing brings a mountain of comfort.

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: Brother diagnosed 2 months ago

My email is on my profile or just send a message to the blog.  I'm having a procedure this morning, overnight here at bsylor amd may be groggy for a few days, but I will respond.

Impatient patient.

Re: Brother diagnosed 2 months ago

Well, I've already heard from dr chapman's office and he wants to see me - maybe this week. That will depend on whether I can travel this week after this ptc procedure. Imhaving to get potassium drips before the surgery. Not fun.

Impatient patient.

Re: Brother diagnosed 2 months ago

Oops, meant to post that ^ on my page. I've got an iv in one arm and running on no sleep. Sorry.

Lisa

Impatient patient.

Re: Brother diagnosed 2 months ago

Lisa that is absolutely fabulous that you can get in with Dr. Chapman so quickly and I hope you can make it soon. Is the Potassium IV burning? I had that in February when I had to go to the hospital for this darn U.C. Potassium really burns but if they slow down the drip it is so much better. Good luck!

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: Brother diagnosed 2 months ago

That is exactly what they've done. They had to cut dose in half to administer it. Unbelievable burn.

Impatient patient.

Re: Brother diagnosed 2 months ago

Lisa, glad to be of help! Please note though its not the dose its how fast they deliver the drip. When they slowed mine way down I had no burn at all.

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.