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