Bile duct cancer diagnosis

General What's New With You?
1

Hi all my friends, I am sorry to report that the mass was choliangiocarcinoma. At this moment I do not know if there will be a treatment or just palliative care. I have numerous appointments over the next 2 weeks in addition to paracentesis. A large amount of fluid continues to accumulate in the belly. The radiologist who did the biopsy pulled the fluid off today. I asked him if he had heard - yes he knew. He said there was some discussion around here for a couple of days because the sample was small but there were too many malignant cells to ignore.

Some really interesting things have happened which just lets me know I am still in the flow. The week my chronic back pain stopped was the week the ascites started. Finally after one year of pain and being bedridden I was free of debilitating back pain. I had done much work with a pain clinic getting nerve blocks. During this time I lost 56#. Truly thin for a 6'4" Great Dane. :)

And then my belly started growing. It took me a bit to realize it was ascites because I've never had it. So now I have a bloated starving child look - without the flies, but a healthy yellow.

And the week my gastro decided to hospitalize me to do ERCP and try to control LFT's, is the week all the above happened. And of course continued investigation led to cancer diagnosis. '

As soon as I got the news I asked for the chaplain. We had a great talk. I told him one of the things that bothered me most was that the remodel I had started on condo I bought just last year was dropped where it still lies when my back was injured. He told me the church he works at has a group of men who volunteer to help people with home repairs. What a gift!! I assured him I would be calling.

What a relief and how easy was that! Well the oncologist visit is in one week. I will certainly keep you updated not because I think you need to know - BUT because I need the support of peers who understand what exactly we go through. The fear, uncertainty, loss of control, time, learning info we didn't necessarily wanted to learn and more.

I find already that I am the one maybe having to comfort others, I couldn't tell my parents - my sis had to and the best thing to say right now is a sincere "I'm sorry." That is the most comforting. Nothing more or less. I say 'Thank you!"

Right now I have a great deal of peace - I have prepared for the inevitability of this for years. My first mass was resectable without chemo/rad. That was in 2005. God has given me 8 great more years!

My goal is just to be happy here in beautiful Denver, Colorado. To laugh and smile no matter the activity. To see the beauty around me. To bring joy and beauty to others. To be the best me I can be.

I will keep in touch here but also at my page 'debpetersen' at www.caringbridge.org.

Cheers and love! Deb

2

So very sorry to hear about your dx, Deb. I'm glad that you have good support and that was wonderful of the chaplain to offer some guys to help with the reno.You're a truly good soul and deserve better than this rotten disease and I deeply admire your ability to see the beauty around you and bring same to others. If you ever feel like sounding off, ranting, feel free to direct-message me.

Alix

3

Good morning, Deb.

We (members of this site) may never meet one another. However we are bonded by this world of PSC we live in. We're strong. We fight together, learn from one another and support one another. Know that you have someone thinking of you today, wishing you smiles, comfort and the strength to push forward. Truly from the bottom of my heart I'm sorry you're having to deal with this. I find it amazing and encouraging that you see the beauty in life and appreciate the blessings God presents. Your outlook on the situation shows the peace of your soul. Know that you have someone praying for peace for you. Silently I will continue to pray.

"Heavenly Father, I pray in your name, asking you to comfort this woman with the warmth of your love. Fill her soul with your peace. Please allow her to feel your presence and continue to praise your name with faith in her recovery. I ask that you keep this woman in your hands, strengthening her body for this journey. If it is in your plan Lord, I ask that you cleanse this woman's body, taking every piece of this disease out of her, curing her so quickly the doctors have no explaination and give the glory to you as they are dumbfounded in the miracle. Heavenly Father I ask that the men who enter her condo for repairs come with your strength. I ask that these men work with pride in assisting this woman, allowing her to have the condo she deserves, pouring their energy and determination into her condo. Make this home a place of peace, filling it with your spirit, allowing her to come home to place that makes her smile. I pray in your name heavenly father, in the name Jesus Christ. Amen"

-A

4



Gloria said:

Very good prayer...I also read it and say Amen. I pray for you too great dane, God be with you.

Good morning, Deb.

We (members of this site) may never meet one another. However we are bonded by this world of PSC we live in. We're strong. We fight together, learn from one another and support one another. Know that you have someone thinking of you today, wishing you smiles, comfort and the strength to push forward. Truly from the bottom of my heart I'm sorry you're having to deal with this. I find it amazing and encouraging that you see the beauty in life and appreciate the blessings God presents. Your outlook on the situation shows the peace of your soul. Know that you have someone praying for peace for you. Silently I will continue to pray.

"Heavenly Father, I pray in your name, asking you to comfort this woman with the warmth of your love. Fill her soul with your peace. Please allow her to feel your presence and continue to praise your name with faith in her recovery. I ask that you keep this woman in your hands, strengthening her body for this journey. If it is in your plan Lord, I ask that you cleanse this woman's body, taking every piece of this disease out of her, curing her so quickly the doctors have no explaination and give the glory to you as they are dumbfounded in the miracle. Heavenly Father I ask that the men who enter her condo for repairs come with your strength. I ask that these men work with pride in assisting this woman, allowing her to have the condo she deserves, pouring their energy and determination into her condo. Make this home a place of peace, filling it with your spirit, allowing her to come home to place that makes her smile. I pray in your name heavenly father, in the name Jesus Christ. Amen"

-A

5

Im so very sorry and will pray for you. God be with you. Keep your faith with God and he will keep you for all eternity. And fear not as God has the final say when our life is over and He can perform any miracle at any time.

6

Thank you Gloria - that was heartfelt and beautiful. Someday I will tell the story of my near death experience in 2006 which gives me the peace and strength I have.

7

I know that with the fear I have regarding this disease, I will look forward to that story. And someday I know my story will hopefully help others as the embark on their journey with this disease.

8

I'm so sorry to hear about your diagnosis. You have a wonderful attitude about all of this.

You will be in my prayers. Stay strong.

Marylee

9

You've got mail! Check your CaringBridge guestbook. CB meant so much to me and my donor before, during and after transplantation. Deb, I pray that your strength be renewed day by day so you can face this challenge and be lead to victory over bile duct cancer. Have faith in the infinite one to be with you every step of the way. Your tenacious character has sustained you through horrific health challenges. You are an amazing person.

Sometimes I have wondered, "why has this happened to me? Can't I experience normal health? Ever?" The sky never opened with a voice telling me my wish was granted.

Alone with my thoughts and what my inner voice (the intelligence we all have and experience, but don't know where it came from) answers came for my questions. Here is what I believe. We are among some chosen children. I don't know the criteria for selection, but here we are. Like Job from the Bible, we have been smitten with suffering, pain and fear. It was a test of Job's faith, and so it is of ours. Some of us will prematurely give up. Others, will fight on full of faith in divine help. Some are patients that doctors love, and it is to them that we respond best in treatment. I think we are lead to caregivers that help and away from those who don't. It's been so long since I have been really well, I can't even remember what it is like. That should not be our vision or concern. I am grateful for this day, and the inner voice says be kind to those who refuse to understand or appreciate what you are experiencing. Hold no grudge. Resentment and hate kill. Gratitude heals. Fill your mental bucket with more gratitude things so they push out anger, self-pity, resentment and blame. And, the last part of my answer was that however we finish this challenge and cross the finish line, we will stand with bodies new and hear the voice say, "Well done, good and faithful servant. Come, enjoy the reward I have prepared for you."

10

I'm so sorry Deb. but we will be here for you.

11

Stay Strong!

12

Deb, I am so sorry to read of your diagnosis. We all dread it, and then when it happens to someone you know (even though we've never met) there seems like there is so much to say and yet so little, too. It sounds like that if a mass was showing, the involvement must be pretty ... what's the word? large? widespread? I am glad that you got through your last bout with CCA successfully, and had 8 years free of it. And I'm glad that you don't have chronic back pain anymore. You sound peaceful and yet I know the uncertainty (not even knowing yet if you will receive treatment or not), loss of control, and all kinds of other you are experiencing even now will be hard to take.

By the way, today, just now, is the first notification of your post, which is dated Aug. 17, Saturday. I would have written sooner. Do you want visitors or are you going to limit that for now at least? I've gone through cancer treatment (breast cancer on top of my PSC diagnosis) at the end of 2011, and there's no feeling like getting that diagnosis. I don't pray much but I will send you good energy, lots of it.

Please let me know if I can do anything to help. Seriously.

Dana

in Denver, of course

13

Dear Deb,

I am relatively new to the site and actually joined because of my six year old Princess. I read one of your posts and had actually contacted you because what I had read had inspired me and given me hope.

I am really sorry to hear about your diagnosis and although I don't know you, I shall pray for you and send you positive energies.

I only received the notification a little while ago, other wise I would have posted sooner.

Please continue to post because just as you touched me, you probably have touched so many other lives. My daughter is only six and doesn't realise what she is facing. There are times when it overwhelms me and reading what people write here gives me the strength.

Please take care of yourself and continue to fight and be strong and know that you have a world of support and people that are thinking of you.

Kind regards always,

Melissa

14

Deb,

Your courage in the face of this terrible news lifts my spirit. Thanks for sharing and for your upbeat outlook. I will be praying for the best possible outcome. All the best.

Brian



stef said:



Gloria said:

Very good prayer...I also read it and say Amen. I pray for you too great dane, God be with you.

Good morning, Deb.

We (members of this site) may never meet one another. However we are bonded by this world of PSC we live in. We're strong. We fight together, learn from one another and support one another. Know that you have someone thinking of you today, wishing you smiles, comfort and the strength to push forward. Truly from the bottom of my heart I'm sorry you're having to deal with this. I find it amazing and encouraging that you see the beauty in life and appreciate the blessings God presents. Your outlook on the situation shows the peace of your soul. Know that you have someone praying for peace for you. Silently I will continue to pray.

"Heavenly Father, I pray in your name, asking you to comfort this woman with the warmth of your love. Fill her soul with your peace. Please allow her to feel your presence and continue to praise your name with faith in her recovery. I ask that you keep this woman in your hands, strengthening her body for this journey. If it is in your plan Lord, I ask that you cleanse this woman's body, taking every piece of this disease out of her, curing her so quickly the doctors have no explaination and give the glory to you as they are dumbfounded in the miracle. Heavenly Father I ask that the men who enter her condo for repairs come with your strength. I ask that these men work with pride in assisting this woman, allowing her to have the condo she deserves, pouring their energy and determination into her condo. Make this home a place of peace, filling it with your spirit, allowing her to come home to place that makes her smile. I pray in your name heavenly father, in the name Jesus Christ. Amen"

-A

15

Dear Deb,

At the recent visit to my gastro I asked him if there had been any advance in PSC research. Since I follow the research going on in PSC, especially the work done at the Mayo Clinic, I could have known that his answer would be "No".

I take tremendous strength from your own outlook about the problem, one which most of us older folks and alas also young children with PSC and others not in line for liver transplants, do face.

At this moment be assured that we all are with you in this ordeal. I have little to add to the good messages you already have received from all of these wonderful people.

Miraculously, I also experience the feeling of peace you mention.

Adrian Mak,

16

Let the special angels who surround you care and comfort you. Thoughts of positive thinking and prayers sent your way.

17



adrian said:

Dear Deb,

At the recent visit to my gastro I asked him if there had been any advance in PSC research. Since I follow the research going on in PSC, especially the work done at the Mayo Clinic, I could have known that his answer would be "No".

I take tremendous strength from your own outlook about the problem, one which most of us older folks and alas also young children with PSC and others not in line for liver transplants, do face.

At this moment be assured that we all are with you in this ordeal. I have little to add to the good messages you already have received from all of these wonderful people.

Adrian Mak,

18

Dear Deb,

What a beautiful, beautiful person you are!

Your attitude to all you are/have been going through and going through is inspirational and certainly gives someone like me (who is fairly near the beginning of my PSC journey ) lots and lots of hope to be similarly joyful and grateful when I have to face anything similar.

Thinking of you and sending you love and good energy

xx

19

Am so sorry to hear your news , I was once told the same , but fortunately for me , they got it wrong . There is something that I would try if I were you . There are no magic cures for what you have but I feel that this may help you and it has to be worth a shot . Go to http://www.amazingmolecules.com/product/ check out the Health and Science bit and the Doctors and Science bit . I can put you onto someone who can help you get this , and advise on how much you should take and so on . PLEASE at least read it and think it over , ANYTHING has to be worth a go . All the best .

20

Your positive spirit is incredible and inspiring! Your upbeat "voice" is making a difference to people every day, and teaching them how to handle difficult, unthinkable situations with grace and humor. I've shared your story with my family and we are all keeping you in our prayers!