Well, my friends, from the life loves a curve ball comes the latest. What a wild two weeks.
After the first 5 days of nothing when my symptoms first showed up, a week ago Monday, nothing but frustration because my primary was on vacation and my Cardiologist didn't connect the symptoms until that Friday when she ordered the first test. Several blood tests later, I finally hook up with a GI in Lakeway, 30 miles from here, yesterday.
He immediately initiates a video call and tells me he will do the Endoscopic Retrograde Cholangiopancreatography but first he wants a MRI MRCP done, which I am having done in Round Rock this afternoon, 1:30 away. Toward the end of the call, he poses this question "how honest do you want me to be with you"? Take a look at the sentence above because the clue is there, it is that Cholangio part, the rare cancer that took my wife. My reply was "deadly honest" and he told me this has to be more than just gallstones and asked me if I had lost any weight since this started. I had just been weighed that morning at the primary's and no one mentioned it but I have lost 17 lbs in 10 days. "Any cancer in your family"? "No, but my wife died from Cholangiocarcinoma". Dead silence. I could almost feel his wheels turning 'what are the odds that a husband and wife have one of the rarest forms of cancer'? He then replies "but she wasn't a blood relative". He had to come with something. Anything.
"How honest do you want me to be with you"? Ever had something like "I think your cute, funny AND sexy" follow that? I do appreciate his honesty and preparing me for news he doesn't want to deliver.
My Bilirubin count, normal being 0.0-0.4 has gone from 7.7 to 10.1 and the itching is unbearable. But no pain which really has him stumped.
What started off with a limp has gone full hair on fire with Dr. Cohen's staff trying to find a place for me to get the MRI and had to end up putting his procedure off until Friday after they located a 5PM one in Round Rock today. They were great and I look forward to meeting some of them tomorrow.
I had to do what I didn't want to do, pull my son into this because someone has to drive me to the ERCP and back home again. While we were talking, he evidently pulled up what an ERCP is and that one word hit him hard. He asked me where the doc thought the trouble was and I told him. We both know that particular cancer has the worst survival rate.
It has that incurable but treatable stigma with the goal being the extension of the quality of life. One question I could never bring myself to ask my wife was if she had it to do over again, would she have gone into treatment to extend that quality of life? Quality of life can only be defined by one person. The last 3 months were anything but quality for her. But as long as she was fighting it, we held onto that slim thread of life, hope.
I know, I am ahead of the game here, getting out in front, just as I did with the Cirrhosis self diagnosis but this is my coping mechanism, go worst case scenario and what needs to be done, plan and be pragmatic. You will not find me at the denial or angry stage with this. My job becomes a simple one, make others around me as comfortable as I am with the eventual outcome.
If this turns out to be nothing more than a gall bladder filled with sludge and stones, and I am really tired of docs talking about my gall bladder that way, than so be it. But I am certain it is not. The actions and speed now being employed tell me that. I really haven't asked for an extended check out time and that seems to upset some people but those people do not live inside my head.
I recall when my wife went to see our Internist right after Christmas when this growth showed up. He immediately sent her to the GI but he called me and his words still ring in my head today "Michael, this is bad.....really bad". He was right and while his words sent me to the ground in a crumpled mess, he prepared me. These guys that do that medical gig long enough, they know bad when they feel and see it. They are not surprised by much.
I know you feel the need to say something, especially in this thread, but that really isn't necessary. I've interacted with you enough to know how you feel and I felt the need to put this here now. To put it in front of me and it is cathartic.
My friends, I am not looking for prayers or hope but we have a special bond in this thread, it is like no other thread. I will keep you apprised of the developments in this because I feel the need to share it and cannot with family or friends that are too close to me because they can't understand.
In the irony department, when my wife was diagnosed and I was at that praying and bargaining stage, I asked God for this rare disease instead of my wife for her zest for life was far superior to mine. You think He didn't catch the "instead" part of that?