Topic: New diagnosis

I started a Caring Bridge site before I found this organization. I'm a PSCer, 38, being evaluated for transplant. Scared, but cautiously hopeful. Feel free to read and drop me a line.

http://www.caringbridge.org/visit/scottgallaway

Re: New diagnosis

Hello Scott and welcome to our wonderful family. May I suggest you also post on here as you just might get a barrel of help if you ask. I think you can copy your story or part of it over to our site. You have a great attitude and that will help more than any RX. We always try to stay realistically optimistic. By the way you have such a beautiful family. Please feel free to come here and ask, vent or advise. We are glad you did find us but sorry you had to come. Please keep us posted.

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: New diagnosis

Scott - Just read your Caring Bridge site posts.  You are quite the writer and seem to have a great attitude (as well as a sense of humor)!  Please keep us posted on your story and all our best wishes - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: New diagnosis

Scott....also read through some of the other blogs re: liver transplantiations.

Kim Kircher's blog: Finding Salvation Just Fifteen Minutes at a Time by kimk

My husband's CaringBridge site by jennej

Latest Franson blog: bypolarbear.com by bbfranson

All my best wishes,
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: New diagnosis

Hi Scott, I was wondering how you were doing. I read your Blog today, just wonderful the way you write. Did you ever stop to think that when adults die they have usually already signed an organ consent. When the organ comes from a child it may be through God that he calls for the child and then he works his Miracles through the hands of the surgeon. Guess it goes back to 'ours not to reason why'.

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: New diagnosis

Thanks for the comments, all. I've been in the hospital this past week due to some complications involving newly placed PCT tubes which are helping to drain the blocked bile ducts. Everything is now under control, and I'm home, but I'm still on the pain meds. I've been reading the blogs on here--many interesting people. It's educational. Thanks for the suggestions, Marion. Nancy, your strength is amazing. Selfishly, I'm glad to be on this end of the cancer. To have a loved one suffering this would be more than I think I could bear. I'm sorry to hear about your son. Lainy, thanks for trying to console me about the philosophical dilemas this situation presents. Although I won't go so far as to agree that all actions are for the best in some divine plan (ie, children dying violently to provide organs) as this line of thinking can lead to some dangerous places, including resignation of people to do anything good because they figure it's all part of God's plan. For instance, prior to 1920, it was assumed it was part of God's plan to keep women as second-class citizens, unable to vote, or own property, or have rights to their children, etc. Other examples abound all over the place. It alleviates responsibility by saying something is the way it is because God must want it that way. BUT, I would agree whole heartedly that God is mysterious, inscrutible. Your line from Tennyson's anti-war poem does seem to resonate with our lack of an answer for "why". Indeed, it's a mystery.

Re: New diagnosis

Scott - Glad to hear you're home and things are under control.  There is so much I could say:  I agree with you; I always wished it was me that had cancer and not my son....it was the most difficult thing I've ever been through in my life but I had to cope for his sake.  I have lots of questions and thoughts about Divine plans, etc., etc. but I agree - life is a mystery!  Wishing you well - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: New diagnosis

Hi Everyone :  I am new to this blog.  My wonderful husband was diagnosed on
April 20th of this year I buried him last Wed.  Dan was a dentist and Ph.d who could never wrap his head around cancer let alone this one. He swore he would
beat this and until his last breath he would not give up.  I just know tonight in all my anger and lonliness I wanted to hear I am not the only one .  I never heard of this cancer let along the speed at which it travels.  I have two beautiful children who I am praying for everyday that this dreaded disease escapes them. 

I am sorry to say Hospice was not much help to Dan but the Pallative Care team at the Hillman Cancer Center in Pgh was wonderful.  Dan never never never gave in .  That is why I am left with a practice, our home and so many unanswered questions.  As hard as it maybe you have got to talk to your family about your wishes should this not go in the right direction.  Please don't make anyone else have to go thru this.  Thanks for listening Dan wouldn't log on when he was alive he was too scared.  So I am doing it for him.  Thanks for listening it is one of those nights.

Re: New diagnosis

Maureen, I am so heartbroken for your loss. I was 52 when I was diagnosed and so blind-sided by this cancer. This site is wonderful place to come to, there are so many compassionate people who understand your pain.
Lots of prayers-Cathy

Re: New diagnosis

Dear Maureen, please accept my deepest sympathy on the loss of your husband,
Dan. I lost my Teddy December 6th. In Home Hospice for us was terriffic but the last 4 days were spent at a Hospice Facility and it was a nightmare. I put a video on You Tube titled "Teddy's Hospice story". Sadly, you are not alone in your journey. You will be strong for your children and somehow most children seem to have their own strength as well. It will be  8 months on the 6th and I can honestly say I am not lonely as I have great friends and kids, but there is a big hole that I cannot see anyone ever filling. I am quite a bit older than you and we fought this beast for 5 years so that may help in the way I grieve. When I feel down I just tell myself how lucky I was to have a love for 16 years that most people never have in a lifetime. 
I do tell peoople that it is so important to talk about wishes and what needs to be done. Ours was a second marriage so it was important to have all the kids know Teddy's wants also. Everything was spelled out months before he passed. Everyone got to say their goodbyes and as hard as it was I can only imagine what you went through in such a short time. I am sending you prayers and strength so that you can get through what you have to do and then to look for Dan in your children who will give you that extra strength to go on.

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.

11 (edited by Darla Thu, 04 Aug 2011 07:55:09)

Re: New diagnosis

Maureen,

You are not alone.  There are others of us who lost their loved ones swiftly from this disease.  I am one of them.  We had less than 2 months from start to finish.  One day Jim was complaining of a slight pain and being tired and before I knew it he was gone.  I also have been left in a situation similar to yours with a business to run and nothing in place as to how to deal with things if something happened to one of us.  It has been almost three years for me and I can tell you that although it is hard, you will be OK.  We just go on and deal with things one day at a time and somehow we do get by.

We had never even heard of this cancer and didn't know what we were fighting until a few weeks before he passed.   I found this site a few days later and this site and the wonderful people on it is what gets me by.  Please keep coming back here.  It does help to know you are not alone and that there are people out there who have been there and truely understand.   Believe me, as hard as this all is, you are stronger than you think.   Take care Maureen.  Keep coming back here when you want or need to.  There is a whole lot of love & support here.  People who care.

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.