Topic: "You promise us this moment..."

Hi everyone:

I am new to this site, but my wife spent time here when I was first diagnosed, and the community support here was very helpful to her, so I am grateful to all of you.

I was diagnosed with CC the day before Thanksgiving last fall. At that point I was very sick, underweight, and jaundiced. It was a difficult time for my wife and the rest of the family.

Before we knew the extent of the disease, my doctor first sent me to UCLA with the hope that I might qualify for their CC transplant protocol. More detailed PET/CT scans showed that in addition to the Klatskin tumor, I had large lymphatic masses, and multiple large liver tumors. Obviously, I was dropped from the transplant protocol. Beyond that, however, because of the lymphatic involvement and the concomitant high recurrence rate, they also determined that I should not receive any kind of resection surgery, and I was placed on a track for palliative care.

That's where this site changed our lives. My wife refused to accept their decision. She had read here about a caring surgeon at UPMC, Dr. Wallis Marsh. She contacted him and he agreed to review our files and scans. Thinking that surgery might actually provide me with higher quality of life and more time, he contacted his friend and colleague, Dr. Rick Selby, who heads the hepatobiliary surgery and abdominal transplant divisions at USC Keck Medical Center. Dr. Selby had me in surgery a week later! In January and March, Dr. Selby performed two surgeries, completing an open cholecystectomy, central liver resection, partial hepatectomy, abdominal lymphadenectomy, radical bile duct excision, hepaticojejunostomy, and left hepatic lobe resection. After these surgeries, my overall health immediately rebounded. I am pink (my original color), have gained weight, am back to work, and back to working on my old cars (hobby).

I am currently undergoing adjuvant therapy at USC and UCLA. Under the care of Dr. Heinz-Josef Lenz at USC, I have completed two months on Gemzar and Xeloda., and am now beginning radiation. I had a microscopically positive margin at the anastomosis, so I received brachytherapy boost to that site this week with Dr. Jeffrey Demanes at UCLA. In 10 days, I will begin external beam radiation at USC.

This week Dr. Selby sent me the report from my last PET/CT done Monday. He attached a one-sentence note: "I like it." The report was clean with no current evidence of disease.

At Thanksgiving dinner, the day after my diagnosis, my father-in-law started the prayer, "You promise us this moment, help us to live fully into the moment." Of course, there were tears. But, it is a phrase I carry with me. We know that because of the positive margin and lymph node involvement, statistically the overall prognosis is poor. Even so, my doctors at USC are willing to treat me as an individual, fighting for a cure, rather than viewing me through a filter of statistics. So, while I continue to fight, I also pray every day that God might help me to live fully in this moment, not knowing what the future brings. At this moment I have the support of my faith community, am healthy and active, and have been granted more quality time with my beautiful loving wife. I am blessed.

Re: "You promise us this moment..."

What an inspiration! Thank you for sharing your story. Keep enjoying every day.  Hugs. Nancy

Loving my husband from afar.

Re: "You promise us this moment..."

mparsons....Congratulations.  Everything lines up right for you:  a wife, who does not take no for an answer, a fantastic team of physicians advocating on your behalf,  your clear understanding of the nature of the disease, a supportive and loving family, and a fighting spirit and determination to conquer this cancer. 
Postings such as yours give hope to many.  Thank you.
Please, continue to stay well and please, keep us posted.
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: "You promise us this moment..."

MPARSONS, another beautiful, Miracle. WOW! Sounds like they didn't leave anything in you unturned! We always say that knowledge is our most important weapon against CC and again our CC site proves it with another win!
You are an inspiration to CC patients and your wife is an inspiration to Caretakers.  I wish for you continued success and look forward to reading more good news.

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: "You promise us this moment..."

Hi Mparsons,

Welcome to the site.My thanks to you for sharing your most inspirational story with us all, wow!!!! And as Dr Selby said in his note to you, "I like it!" Thanks so much for this, and I hope that the rest of your treatment goes equally well for you and please keep coming back and let us know how it all goes. Looking forward to hearing more news 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: "You promise us this moment..."

Mparsons, that is beautiful! My husband has I-CC, but it occurred to me the other day that *I* should be living as though I have it too..in the sense living in the moment and not knowing what lies ahead! God Bless you and your family!!!!!

Re: "You promise us this moment..."

Mparsons, thank you for sharing your story. 

Daniela

Re: "You promise us this moment..."

Hi,
the following is the quoted sentences from your message/.

"So, while I continue to fight, I also pray every day that God might help me to live fully in this moment, not knowing what the future brings. At this moment I have the support of my faith community, am healthy and active, and have been granted more quality time with my beautiful loving wife. I am blessed."

Your are indeed blessed by God's Grace;only a handful of patients (including me) have God's blessing for a second life even as, what you said,not knowing what the future brings is quite true. For me , I know I have to be hurry and  give backa much as i can in my retirement to serve Him for his Grace toward me. I hope others will do the same.
However, your also mentioned about this web site helping you and changing your attitude to become proactive rather than just accept what was told by an inexperienced doctor of this disease is also a powerful statement for  other patients or caregivers  and also a tribune to the founders of this cholangiocarcinoma foundation about their vision and selfless hard work to continue to provide emotional and medical info. support.
For this I am  always grateful for the support they provide for me whenI first encountered with this site.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: "You promise us this moment..."

Always wonderful to hear good news! keep us posted!!!!
Hugs,
Roni

Re: "You promise us this moment..."

Fantastic story! Wishing you continued success on your journey...

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
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: "You promise us this moment..."

Mparsons, this is so inspirational and hopeful. Thank you for making my day.
Lisa

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: "You promise us this moment..."

mparsons...You are blessed and highly favored of the Lord! I too am unwilling to accept the "expiration date" given to me by the doctors. I know that my help cometh from the Lord and He will keep me here as long as He feels I need to be here...and not one minute more. So whether I get to stay here and enjoy my family and friends; or whether I go to heaven and enjoy my family and friends...IT'S ALL GOOD cause IT'S ALL GOD!

Peace to you all.............

Helen

Re: "You promise us this moment..."

Speechless... YAY YOU! (and your wife!)