Today, I'll tell you my experience with that mystery and my eventual diagnoses of pancreatic cancer. Keep in mind – no foolin' around – that my story applies only to me. I have no idea how this works out with other people.
MYSTERY MALADY SYMPTOMS
Last October, after some unaccounted-for symptoms prevailed over two or three weeks, I visited my then-physician who brushed me off after seven minutes saying it was probably a virus that would go away soon.
The symptoms were painful or irritating or alarming enough (to me if not the doctor) that it was obvious I needed a different physician. If you really care, you can read about my difficult search for a new primary care doctor here.
After my many failed attempts to find a doctor who would take me, a friend intervened at a major teaching and research hospital here and I got an appointment right away.
The mystery malady had begun in October 2016 and has continued until 31 May 2017 when, finally, the diagnosis was determined. As terrible as it is, there is a kind of relief in knowing the malady has a name.
In between those dates, there was a collection of 12 to 15 symptoms that came and went mostly independently of one another, usually several at a time in various combinations over the months. Here's a list that is as close to complete as I can make it:
- Random pains rotating through sides, stomach area, chest and back
- Sick headaches a couple of times a week
- Weird dark spots on skin that come and go
- Weight gain early on
- Weight loss later (once, 11 pounds in two weeks)
- Extreme tiredness – stopped daily workouts
- Hard to sleep more than three or four hours
- Bright orange urine
- Unbearable itching on every inch of skin
- Abdominal pain following meals
- Deep, horribly aching pains in upper arms
- Worst leg cramps I've ever experienced
Usually, there were “only” two or three or maybe four of these symptoms at a time. The orange urine was so bright you could have lit up the whole bathroom with it. That happened for a week or two in February, subsided and again for a few days just before the diagnosis.
The itching occurred concurrently with the orange urine, was terrible all day and ten times worse at night. No anti-itch creams like those for mosquito bites worked. The pain of scratching too hard, even if I drew blood, was preferable to the itching.
If it were not so awful, it would have been funny: at one point I twisted a paper towel to pull back and forth between my toes because I couldn't effectively scratch there.
The deep-yellow jaundice appeared a couple of days before the diagnosis.
As I said, I never had all these symptoms at once. It was a mix-and-match mystery malady over seven months. A few continue as I await surgery.
Through all this, I was seeing the doctor regularly. He tested for just about everything and it seemed, over the months, that they took a gallon of blood from me. All the tests came back in the normal range. All the various kinds of scans and a colonoscopy returned normal readings.
Then, on 31 May, I returned home from that latest appointment to a phone call from the doctor I had just left: Get to the hospital immediately, he said. A bed is waiting. I'll meet you there.
I forced him to tell me why. The words “pancreatic cancer” were said but that's not something that sinks in at first. It takes awhile. If I found out what had alerted him to the diagnosis, I don't recall now.
It's also hard to recall what they did to me in the hospital, but before long the itching and most of the pain were gone. Lots more tests were performed and the endoscopy during which a temporary stent was placed to redirect some effluviant(?) of the body.
If you try to find out online why it is so difficult to diagnose pancreatic cancer, you won't get far. Most pages – even from some of the highly respected health organizations – go straight from “it is difficult to diagnose” to “once it is diagnosed, treatment is...”
If I tried, I might find some better information but mostly I don't have time and I'm not all that interested right now. Maybe someday.
So, there you go, dkzody. That's the mystery malady and the diagnosis.
As I said before, they – healthcare people – are keeping me busy. There is another test or consult almost every workday. There is much to arrange for Ollie the cat while I'm gone, for what I need to take to the hospital, for care when I get home and to arrange the house for what I can and cannot do on my own when I return.
I've tried to keep up with email from all you wonderful readers but I know some have slipped through the cracks and I run out of steam with a need to lie down to rest or nap several times a day. I had no idea how much there is to do to prepare for surgery. I thought the hard work is afterwards.
Oh, one more thing: Throughout this odyssey, I used the phrase "mystery malady" as kind of joke to myself about all the disparate symptoms. It has turned out not to be much of a joke but it served me just fine until there was a real name.