Topic: Hello... My story!

Good Morning...  My name is Joe, On Oct 2, 2011... 4 days after my 48th birthday I went to the hospital with pain in my right side. At first doctors where pretty sure I was dealing with an appendicitis. The ran a CT Scan and return 20 minutes later saying... you have an extremely large tumor in your liver 11.5 x 9.9 x 8.5... You could have heard a pin hit the floor!!

Fast Forward to Nov 4, 2011... University of Chicago... Stage Four Inoperative Cholangiocarinoma. 9-12 months typical, being young and healthy maybe 24 but much more would be a dream. Only option life prolonging measures.

Stunned would be an understatement. For about 30 minutes, I was doing just as he told me... Going home to get my affairs in order and die. Then I said NO Way... I refuse to accept this answer!!

Nov 16, 2011... Cancer Treatment Centers of America... Same answer, very difficult disease. In liver and nearby lympenodes and one distant. At least what is detectable at this point. I asked the doctor, how can I expect this all to end, how will I know since Outside some minor pain in my side, I felt great. He said lets not talk about that right now... lets talk about fighting. Lets see if we can get some results with Chemo. That evening I started with Gem and Cicplat...

This journey has been nothing short of amazing. from the physical, emotional and spiritual aspects.  On Nov 4th, I weighted 284 lbs, c-19-9 where 31400. On Nov 5th members of the church came to the house, A church and people I did not know... anointed me and prayed.

Nov 6th I weighted in at 272... lost 14 pounds in worry and grief. But on Monday the 6th, after prayer from others and honestly me begging God for my soul... not my life, but for my soul... My mind started to view this differently.

On Nov 16th... Weight 280, C19-9 where 3069... Down over 21000 with only prayer we started the treatment. With every treatment we sat with the drug on our lap, hands on it with anyone nearby that wished to pray. We prayed that my body would receive the drug and it would seek out the cells it needed to kill and do just that. and we prayed in faith.

Dec 28th, 2011 Weight 290lbs, c19-9's 309... Had not been sick once... Tumors and lympe had shrinkage.

Jan 15, 2012 last chemo we could get on schedule as my platelets would not recover. Each week we would test at home plates would be good to go, get there and the would have dropped..

Then again... more blood issues 4 weeks without... Started Juicing, taking all the supplements they suggested. I found myself asking God, what if this and what if that... and one morning he answered... "Joe, you are so focused on a disease that is trying to steal your life and you are so focused on it you are giving it what you have. so focus on the disease or Me, but please pick one"  I picked Him.

Next treatment Feb 14th... Everything Good... Got treatment. next scheduled for Feb 22, Blood checked at home on 20th... Good to go... get to CTCA on 22nd platelets too low again. No treatment... Frustrated, I looked at my doctor and said... What if I demand you treat me. He said I would... I would adjust the level and make you sign that it was ill-advised but you are in control of your treatment and I am here to serve you. He said before I do, I want you know know just what you are asking me to do. If you crash your platelets, you can bleed anywhere in your body and could bleed to death. If you are lucky, it would be your nose, we could pack it so tight nothing would come out, but if you where unlucky, you could bleed in your brain, and odds are you would die. And we could do nothing but watch.

Friends my Head was screaming. I have to take control of this, My heart was saying, "Joe, I am in control, leave it to me". I asked my wife what she thought... she said it was not worth it, I asked the doctor again, he said I already told you how I felt. I said NO Doc, Tell me what you would tell your brother. Knowing what we know. You said the only medical hope I had was to get the chemo in in hopes we would get the tumors and lympe to shrink. With that knowledge, what would you tell him... He said Joe, I would hope I could have a clear enough head without emotion to tell him to wait.

So here I sat in the office... Frustrated, alone, mad, my head screaming someone has to take control, My Heart saying, Don't do it, my wife saying no, my Doc saying no and him pretending to be my brother saying please wait. So, I did what i never do in life... I backed down.

When I Got home, I went for a walk with God. I asked him to show me... To prove to me, his hand was at work and I should just completely trust and release it into his control and just walk the path which was ahead.

Well... I have had Kidney issues my entire life... I always have stones, even today I have three riding along, but they seldom give me trouble. Well the very next morning when I got up to void, I started passing blood, then I passed several large clots and then it cleared up as I finished. No warning of an issue and no issues afterwards. God clearly answered my request.

That day... that moment, I climbing safely and comfortably in the life boat of Faith in a very Great and powerful God. And I walk now with His will not mind. I will walk this path and glorify and witness of his greatness.

Feb 28th... Doctor walks in... Sorry Joe, Blood is not good cannot do treatment. I smiled at him... said, Doc. I respect you and admire you and you have become a friend as well as my doctor, But... I have more comfort in the promises of God, then the medical profession and of mans opinion and knowledge.  I am not giving up, but trusting in faith over knowledge. He said are you comfortable there... I said even more... confident!

He said, Well I think we are as far as chemo is going to allow us to get and we should look at other options.

Here is the Greatness of trusting in God...

On April 4, 2012... 5 months from the day, (A short season) From the day I was told I was going to die and it was only a matter of time. Weight 302, c19-9 at 47, tumors any lympe reduced by 40%... I had a very successful liver resection. Margins were all neg. the nearby lympenode which tested pos on pet and the surgeon said for certain where cancer as he removed them... In pathology tested negative. distant lympe was not resectable but is planned attention of radiation...

Fantastic news... Today... May 9th 2012... I am nearly 95%... my wound is completely healed, my skin looks better then it has in many years and the whites of my eyes are whiter then ever.

On march 24 my mold is being made for Radiation... and between march 31 and June 4th... I start 5 weeks of radiation with chemo as a sanitation precaution.

Now... with all this said... Medical profession has told me I have a 50/50 chance of this all coming back or it being seeded somewhere else and just has not shown up yet.

But... Let me tell you... My mind and my soul are healed... Life whether 30 more days or 30 more years... will never be the same... Never!! I now live with Joy, peace, love, forgiveness, comfort, trust in my foundation, what without this disease I would have most likely never learned to the level I have. My God is an awesome God, both here in life and yes even after I leave.

My future is in God's hand. I believe in his will. I believe in his plan. I believe had my focus not have turned to him and focused on worldly knowledge... the word of man... I would not be as far along as I am.

So, I have a doctor who uses his knowledge to do what he thinks is best for my physical body, and I have God who I know controls my spiritual body.

Therefore, in my faith, relationship and love for my Father in Heaven and in the name of his son and my savior, Jesus Christ, This is done... and I am Healed!!

God Bless you all...
Joe
www.cancerbattlecry.org    My story (still a work in progress)

Re: Hello... My story!

Welcome, Joe! I must say I got chills reading your post and all I can add is to keep up the great work all around you and wish you continued success. Please keep us posted on your progress as we truly care.

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: Hello... My story!

Congrats Joe,

I too got goose bumps reading your post, reading this gives me some hope for my mother.  She was just recently diagnosed stage IV cholangiocarcinoma and give at the most 1 yr w/treatment, she is in her 3rd wk of treatment of Gemzar and is doing good, we will know in 6 wks if it is working and I Pray that it is.  I continue to pray to God that he heals my mom and does not take her to soon from us, I truely do believe in the power of prayer... Good luck to you and keep us posted!!!

<3 Hoping and praying for a miracle for my mom <3

Re: Hello... My story!

Dear Biscuit02...  Attitude is Everything... What we have in our Hearts shall overflow from out mouths... MY prayers will be with you and your Mother. If I can offer any advise, it would be to release anything in our hearts we are holding. Give away to God anything we are holding too closely. I would have to say finding peace of mind, has played a very important part in this journey.

About week 4 I made a mistake of looking for positive results from this disease, and found most to be very bleak. I stopped... For I knew it was like a a thief which was stealing only my hope.

So... Never stop believing... Never...

I hope my witness of my journey can be a light in a very dark place.

If you have any questions, ever, no matter how hard, please ask, and I will expose my soul and share my deepest thoughts, fears, and revelations I have had so far with my battle.

Encouragement is the seed we need!! Peace be with your Mom and comfort with you...   Joe

Re: Hello... My story!

Joe...I also would like to welcome you to our site.  Your spirit and determination are infectious and I wish for all good things to continue. 
Joe, I read your inspiring stories and wanted to point out to you a special section dedicated to blogs.   
Due to the high amount of postings on our site, threads can become lost - the blog section will prevent that from happening.  Just wanted you to know.
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: Hello... My story!

Dear Wilma,

I agree... It is important to understand this is an awful disease and it is calming far to many lives. Attention and focus as well as awareness to the plight of so many is without a doubt very necessary. I wish I had the wisdom to know why some and not others. Only God knows. We are all on the bus off life and none of know when we are going to be dropped off. We can dwell in worry of when and where, or we can live each minute to the fullest.

I listen intently to my doctors and trust them very much, but I also know they speak of what history shows, and each person is different, therefore... When I sit in my doctors office, I often feel helpless and hopeful, but in my Faith, I have found peace and confidence. Life, is so special and we want to cling to it so much sometimes we try so hard, we lose sight to enjoy what we have at this very minute. At least I know I was. What I have learned, Life promises only one thing... an End, but faith promises us forever.

I am sorry Your husband has had such issues with his treatment, May I ask if you where offered any supplements to off set the reaction of treatment? CTCA recommended, a Glutimine Powder... Three times a day for 5 days after each treatment, a steroid pill for too days after and Lots and Lots of water!! Did I say Lots of water!! I drink almost a gallon a day... . Vit, D and Vit B2complex, Melatonin, and a couple other supplements... If they have not offered... Please ask them. I am sure they helped me so much. I take a fist full each morning and evening. If he is having sleeping issues... the Melatonin does a great job. These supplements are not covered under my insurance, however it is well worth the 150.00 a month habit. I was blessed to only have been nauseated 8 times in total, which they gave me tables for under my tongue and helped my greatly.

I have no idea what tomorrow will bring for me, what I do know... I will live today the best I can, because tomorrow in not a promise. I pray your husband finds relief from his side effects, quality of life, means so much.

Peace and comfort to you both!!

Joe

Re: Hello... My story!

Hey Liz...   Yes just a short trip on 55... Very close...

My liver resection was done at the Cancer Treatment Centers of America in Zion, IL. Zion is about 5 miles south of the Wisconsin line right on the lake.

They are fantastic... The level of care is crazy good. The level of attention to detail is over the top. My surgeon, Dr Huss spent nearly 2 hours explaining everything he was going to do, he or any doctor there has ever sugar coated anything, the shoot straight, he told me all the possible issues... I just felt so confident, friends and family asked are you scared? I said nope... I have God and a great surgeon... My recovery was nothing short of amazing too... Doctors and nurses would walk in and shake their heads in dis-belief of how fast I was healing. I would simple say, God is Good!

I go there for treatments and I will go there for my radiation. The guest accommodations are above and beyond. Look I sound like a spokesman!! lol...

I will be up there for 5 weeks, home on weekends for the radiation. It will cost me out of pocket, $20.00 for the room (which are super nice) and the gas to get there. All meals are covered for patients and two care givers.

I encourage everyone I meet, if ever needed, 1. Get a second opinion. 2. Get it from CTCA.

We should make arrangements to meet and enjoy lunch.

God Bless you...

Joe

Re: Hello... My story!

Marion,

I will check out the area for Blogs...  Thank you for the leading.

God bless you for your mission and dedication to this site!

I hope I can encourage and be a light here.

God Bless you Sister...

Joe

Re: Hello... My story!

Joe, amazing story! Thanks for sharing

Re: Hello... My story!

Joe, thanks for your story.  Faith is a strong component in this journey.  I was given similar prognosis and am still kicking butt.  It is a very frustrating roller coaster. I am most discouraged by the insensitivity of my insurance company as they restrict coverage to the local area.  No specialists here.  My platelets have been too low for 12 weeks and the docs are content to wait it out.  Without my faith in God, I couldn't handle this.  But I am looking at other centers and trying to find out if any have special rates for people without proper insurance coverage. In the past 8 months I've lost my job, got medical bills out the ying yang and can't pay my mortgage.  But I have courage and faith.  Best to you my friend.  Sherry

Re: Hello... My story!

Hey Sherry,

As if CC was not enough... Job, Fighting insurance company, mountain of debt...  But... Still Kicking Butt!!

Attitude is everything!! For if he is with you, what can stand against you? Your courage and faith will be rewarded.

Oh to live in a world that, when we are down, people lend a loving hand instead of a kick in the head. Where are we too turn?

Sherry, from Ft Lauderdale...  You are added to my prayer list, may the Lord Bless you and keep you during this fight, may he send just what you need just when you need it as you focus on keeping well and remove the weight of the other issues...

Never stop believing!! Standing in Faith with you.

Re: Hello... My story!

Hi Joe,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what you've been through. Glad that you joined in with us all and I know that you will get a ton of support and help from us all. And my thanks to you also for sharing your story with us all, and I am sure that you will indeed be a light here!

Apologies for my being late to your thread here, but I just wanted to stop by and welcome you here. Looking forward to hearing more from you.

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.

Re: Hello... My story!

Joe, you have a beautiful heart and amazing spirit.  Thank you so much for your words of inspiration and love. They made me smile today!
Hugs,
Roni
ronidinkes@yahoo.com

Re: Hello... My story!

What a heck of a story! Thanks for sharing too! Continued success, I'm in the same boat as you with 'adjuvant' therapy. Chemo done, half way thru radiation as of today.

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: Hello... My story!

This was inspiring and just plain awesome.  I hope you keep adding to your story or start a blog. Thank you so much for the post, Joe.

Will keep you in prayer,

C

Re: Hello... My story!

Dear Joe,
Your story brings tears to my face. I believe my mother followed the same path. She took that very same walk, and followed her heart, and what g-ds path was for. She was brave and it was not a quantity to time, but a quality of time with g-ds will and guidance. G-d held her hand March 17, at 66 years of age, they went for the forever walk, and I feel her strength and love more than ever before. I am not sad, but proud to have known her for the 41 years g-d gave her to me. There is a beautiful poem one of my patient's gave me: so I thought I would share:

The Weaver:
My life is but a weaving
Between my Lord and me,
I cannot choose the colors
He worketh steadily.

Oftimes he weaveth sorrow,
And I in foolish pride
Forget , He see the upper
And I, the underside

Not till the loom is silent
And the shuttles cease to fly
Shall God enroll the canvas
And explain the reasons why.

The dark threads are as needful
In the Weaver's skillful hand
As the threads of gold and silver,
In the pattern He has planned

Author Unknown.

Sending you love, smiles, laughter, hope, faith, and all things positive.
Please stay in touch.

Hugs Always,
Roni
Ronidinkes@yahoo.com

Re: Hello... My story!

Roni, that poem is just beautiful, thank you!

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: Hello... My story!

Joe:
What a wonderful story. I was supposed to have my resection the same day as you, but it's been put on hold since I was still suffering from pneumonia at that time and the CT scan showed the tumor had grown. I've since had 4 more rounds of chemo and pray nightly that it's working and that God lets me have that elusive resection. I had another CT scan today and hope to hear good news tomorrow.
I am trying to put my life in God's hands, but was not much of a church goer until a couple of years ago. I was trying to improve my life. About 6 months afterwards I was diagnosed. I haven't yet gotten to the acceptance part. I try, but I still revert back to the "world of man" for lack of a better way of putting it.

Anyway, thank you for the wonderful story. It brought tears to my eyes. What a great story. Prayers will go up to God that your radiation is as successful as the rest of your treatment has been.

And Derin: Happy to see you! I was wondering about you today. Was thinkiong of sending you an email to see how you are doing.

Hugs to both of you.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Hello... My story!

All I can say is AMEN.

Re: Hello... My story!

Dear Joe,

What a beautiful story. Prayers and a positive attitude have sure helped us deal with this monster. It was nice to read such an uplifting post from such a positive, inspiring person. I wish you all the best.

-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.