The beginning of the end

I knew I would have to write this post at some point but it seems strange after feeling so optimistic about treatment options.  I've always known this cancer would kill me and maybe it is somewhat of a relief to finally know how it would handle the job.  The answer is: by strangling my liver.  Apparently you need a liver more than you need an esophagus. That is now clear to me. And the cancer is not above a little vandalism along the way. The time since my last post has been filled with drama. As you shall see.

It started with me noticing  that my urine had changed to a darker shade.  I assumed it was dehydration.  But when  I went to chemo on Tuesday my nurse told me I looked jaundiced. The blood tests confirmed that my bilirubin numbers were quite high.  I had never heard of bilirubin but it is the stuff that makes your poop brown an your pee yellow.  A normal level is 2 and mine was at 8. Chemo was cancelled and I was scheduled for another CT scan.  There are several conditions that lead to elevated bilirubin levels and the ones that can be fixed can be identified through scans.   A CT scan is no big deal any more but I'd just had one and was not eager to have another. This one was a "wet read" meaning I had to wait around for further instructions after the results were shared with a doctor because if there were blockages, they would want to act fast.  I was real grumpy because I was hungry and not allowed to eat. The word finally came to "go home" no blockages were discovered. This was somewhat bad news because this was one of only a couple curable conditions that cause bilirubin a to spike. Similarly I was contacted and told to report for an ultrasound with pretty much the same result.

Meanwhile it had become pretty obvious  that I was jaundiced.  I could now see it in the bathroom mirror and the whites of my eyes were no longer that.  Also my urine was pretty consistently the color of root beer.  Normally, the liver deposits these waste products from breaking down tired red blood cells into your feces. Abnormally it goes into your urine instead and your poop is left pale.

I began to understand that the only remedy left was liver transplant and I knew I was not  a candidate for that. I began to fear that I was experiencing liver failure an I had not yet talked to a doctor. Thanks, Internet!  The symptoms were listed and I had them all. My next appointment with Dr. Kryjewski was the following Tuesday and I was already anticipating the bad news.

And then on Monday the story took an interesting turn. I had spent the afternoon with the children of John Douglas, Grand Rapids Press long time columnist and film reviewer who had just died suddenly from recently diagnosed pancreatic cancer, and I had agreed to help them with a tribute video since he had been a great supporter of GRTV through the years. I was doing some yard work with Mary. We were about to unfold a pool cover and as I was suggesting a method, I heard my voice come out in a squeaky, funny way.  Mary asked me to repeat what I said and she sounded concerned. Once again, my voice came out squeaky.  I started laughing because it sounded so ridiculous. Mary said, " I think you are having a stroke". I had to beg her not to call 911. I felt fine and not a bit foggy. I had to agree I would go to the Emergency Room and managed to persuade her that it would not be in an ambulance.

It was approximately one year ago that I had experienced a minor stroke or TIIA and my ER experience was about the same.  Stroke symptoms skip to the head of the line. Triage ran me through some stroke tests, squeezing fingers, etc.  and could not see anything that looked like a stroke, just like last year. But they take no chances and I was soon on a gurney in a treatment room. Triage mentioned that I looked like "a walking highlighter marker" and they would like to look at that as well. Again all the tests seemed to come up negative for stroke but they got me in for yet another CT scan, this time of my head instead of my abdomen. While waiting for the results, at some point I reached for my glasses that were resting in my lap. But my fingers would not work. We called the nurse back in and clearly something was wrong. My face was droopy on the left side.  An MRI was requested and I was told I would be admitted over night. 

The MRI was scheduled for 10:30 that night and a room was prepared. MRI's are quite unpleasant with all the banging and sci-fi sounds. By the time I got to my room, the results were already in.  I had experienced a series of small strokes or infarctions as they call them. Sounds dirty to me.

I slept poorly. In the morning, Dr. Kryjewski showed up in my room about the time I was expected to show up at his office for my appointment.  He pretty much confirmed what I was suspecting.  I had reached the end of what could be done about the jaundice/belirubens/liver failure. My chemo days are officially over. This is how I will die. Belirubens reading is up to 20 and if unchecked. This will overwhelm my system in 2 weeks  to 2 months, not really enough time to heal the stroke damage. Maybe enough time to get one of those handicap things for my rear view mirror so I can enjoy convenient parking in my days left.

Next comes my decision about which Hospice Organization to choose.  Once again. A rather simple choice on a difficult path.

Alice showed up last night in my room thanks to a sweet gesture from her boyfriend Zack who bought her a plane ticket and made it easy to come Abby just showed up thanks to her mom who droves across the State to pick her up in Detroit.

Now I am plying a morbid game with every activity.  "is this my last________" fill in the blank; Yesterdog, chocolate chip ice cream, movie, or whatever.  It actually started a couple of years ago when I bought an 18-pack of at soap and wondered if it would be enough to last for the rest of my life.  There are still two bars left. May have to kick up the frequency of my showers.