Today, November 25, is the third anniversary of my receiving the diagnosis of cholangiocarcinoma. The actual diagnosis was not the first sign that I had cancer; in fact, tests had already made that clear. But the last round of testing convinced the doctors that the particular kind of cancer I had was bile duct cancer, a/k/a cholangiocarcinoma, and that’s what I’ve been treated for ever since.
And here I am, three years in and still going strong. The doctors believe that the radiation treatment I had this summer either killed or knocked out of action all my remaining tumors. Based on that, my oncologist told us this month that she was completely comfortable with my not having another scan until January – and that in turn points to her feeling that there would be nothing for a scan to find. Hopefully the scan in January will confirm this, and that would be really good news. But if what it shows is that something has returned, and if that something can in turn be hit by another round of radiation, that will be good too.
The only downside, which I’ve written about already, is the side effects. I’ve got several, none terrible but all a bit of a bother. I’m tired a lot, and my energy for things like a regular daily walk has declined, as has my walking speed. I’m retaining water, though fortunately not too much; to deal with this, however, requires medicine that in turn can affect other parts of me (basically, the balance seems to be between my liver and my kidneys), so the doctors are doing their best to give me just the right amounts. And the side-effect that may puzzle the doctors the most is that I have cramping in my hands and legs. This one doesn’t seem to have a single cause; it’s evidence, I think, that the body is a complex apparatus and multiple factors can coincide in a particular effect, happily again not that severe. But the odd result of all this is that although fundamentally I’m clearly healthier – no active cancer! There’s a result I didn’t count on three years ago – in these various more superficial ways I don’t feel that great.
All that said, however, here I am. Last night I woke up at 4 AM feeling nauseous, but a single pill did the job on that symptom. And today Teresa has spent making meat pies (with the inspiration of the British Bake Off show, which we both have been watching), and we will try these home made meat pies tonight. (We had one and it was great!) It is good to be here to get to sample this pleasure.
While not eating pie or taking a nap to catch up on my sleep I’ve also been making revisions to my book; there is always more to do, and I’m still involved in complex dealings with potential publishers, but today I completed one set of reader’s comments, and so this day marked a writing milestone too. I hope the book will actually be published around mid-2019. If and when that’s done then I will face the interesting question of what to do next. One particularly intriguing possibility is that I write manuals for cholangiocarcinoma patients on the law governing their health insurance, a topic that turns out to have many pitfalls which can confuse a lawyer, e.g. me, and no doubt frustrate a non-lawyer even more completely. Or, of course, there’s the possibility of a European river cruise. Or other places to travel and books to read. I’m looking forward to the chance to choose. The world has so much going on in it!
