October 2, 2020 at 9:19 pm #100484BackonmyfeetagainParticipant
I am responding to a woman named Ayhani, who was concerned about her mother, but I’m not able to reacher her. This is what I wanted to say to her:
In my experience with those with cancer diagnoses, most every case is different. I was diagnosed with CC a little over two years ago. Fortunately, the onset of the symptoms was dramatic: tea-colored urine; greasy, clay-colored stools, severe itching, yellow tint. My primary care physician missed the diagnosis and was sending me to have my gall bladder removed, when the Gi doctor recognized the symptoms and sent me for a CT scan. The scan revealed a tumor in the bile duct. I didn’t have much time to be shocked because I received an ERCP very quickly and the installation of a stent. I was almost immediately slammed into painful pancreatitis and.couldn’t think about the CC. The scans revealed that it might be possible for the tumor to be resected, so we used an outfit called Pinnacle Care to help us find a doctor who might be willing to have a go at the surgery. My wife and I visited the surgeon at UCSF and he agreed to perform the surgery – which could be possible, but not guaranteed.
I describe my feeling this way: there is a scene in Saving Private Ryan when Tom Hanks is in the surf off Normandy Beach on D-Day, getting pummeled by the water with bullets zinging all around him. He struggles out of the water, crawls across the beach and hides behind the sea wall (as I remember it). He finally catches his breath, calms down a little, and peers over the top of the wall. Bullets are still zinging around him, but as he looks out, he can perceive a path. He heads for it and although he is scared and does not know where the path will lead, he has found His path. Looking behind him, he sees the water filled with all sorts of boats and watercraft – all carrying the people who loved him.
i remember being overwhelmed with tears – at the uncertainty of my path ahead and at the love that I felt as I pushed on.
It turns out that my tumor was resectable (yay) but that the Whipple surgery still has complications. As I write, I have a bile bag and tubes that drain bile from a port in my chest. I went through 6 months of “chemo light,” oral meds that were intended as a precaution. I have had probably a dozen episodes of chills/high fever that threatened to turn into sepsis; I have made two returns to surgery at UCSF, have had my heart stop on the operating table, had a complete tune-up of my heart, including a pacemaker. I have lost 25 pounds and much of my strength, but I have no cancer, and will be ready for the PTSB procedure that I hope will enable me to remove the bile port in my chest and have the bile drain out naturally. I am wearied by disappointments and restarts, but I keep rising up and moving up the path I’m on. I don’t look far ahead; I just keep trusting my medical team and putting one foot after the other. poco a poco. Yesterday, i went paddle boarding on a lake north of us; when I saw my (new) primary care physician for my annual wellness checkup, he reminded me that they <the doctors> wouldn’t like it if I fell into the lake and got wet while paddle- or wake-boarding. I smiled and said,”I don’t fall” and added “and I’m smart enough (at 73), not to wake-board. It felt good to have a little bravado.
I honestly don’t think my attitude would be much different if my tumor had been unresectable, as long as I felt that I was on my path to “I don’t know where.” – because we all are, really. Dying at 73 would not be a tragedy; dying at 32, the age of my niece, with Stage IV breast cancer and two toddlers, would be a tragedy. Every day that I can make the world a better place is a gift.
I hope these observations help.
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