Pastimes

I've just finished building a cathedral. That is, I have assembled the lego (technically not the actual Lego brand, but a similar idea) version of the Cathedral of St Florin at Vaduz, Liechtenstein. Anand and Gita bought it for me in Vaduz last summer while I was feeling sick back in the hotel room and wondering what on earth was wrong with me and why I wasn't getting better.

My cathedral

I've put the cathedral up on the mantelpiece next to my lizard from Arizona, which makes the lizard look like some sort of Jurassic Park-type dinosaur preparing to rampage through Vaduz.

In other pastimes, yesterday evening I went out to attend my first meeting of the plant club at the local library. It was a pleasant time, and no one said a word about cancer, which was a nice change. 

On my way home, though, I had the radio on, and I did hear about cancer. Specifically, I heard the words cancer and bowhead whales in the same sentence, which was a bit startling. Apparently, bowhead whales live for two hundred years or more but do not much get cancer, suggesting that they may have some important things to teach us.

And then I had terrible insomnia, all because I'd ventured out in the evening. I hadn't thought I was all that overstimulated, but I guess by contrast with my usual days I was. 

It's a little embarrassing that one little meeting about gardening would throw my system off like that.

Clearly, I need to get out more.

One Year Ago

Before I begin, a big thank you to all those who have reached out recently. Your messages of support, optimism, and understanding are deeply meaningful to me.

The seasons are coming around to the cold time of year, and so I brought my tropical plants in for the winter. They seem to be settling in nicely.

Plants in their winter quarters

As the season changes, I find myself thinking back to last year at this time. A year ago yesterday I woke up with a pain in my side. It stayed, getting worse and worse until I finally ended up in the emergency room in mid-December, then in the oncology ward, and then in the endoscopy ward for a biopsy in early January. A week after my first infusion of chemotherapy and immunotherapy in early February, the pain cleared.

This year is different. I'm looking forward to a pain-free Thanksgiving with visiting loved ones, and a Christmas season with no hospital stays. I continue to struggle with fatigue, but the demands on me are low enough that I can manage.

Last year was awful, but it was also—in the absence of a diagnosis—a more innocent time. I kept thinking that surely they'd soon find out what was wrong with me and be able to fix it. 

The truth turned out to be more complicated.

I saw my oncologist yesterday, and he was very happy about my scan. He says he's pretty confident now that I'll be in the minority of patients who achieve survival times of three or more years on the treatment I'm getting. But he also said I will always require close monitoring for renewed progression.

Maybe by next year this time this state of affairs will seem normal.

Results

The radiologist has read my PET scan and the result is "Stable Disease." In other words, the cancer is neither growing nor shrinking. Given how aggressive this disease is, this is very good news. 

I'll admit that I was hoping for some further shrinkage. I responded so well to the chemo + immunotherapy regimen that I was hoping that I would also respond unusually well to the immunotherapy alone. However, my oncologist says that in the end it doesn't much matter whether the tumor shrinks further. The main thing is to keep it from progressing again for as long as possible. And so far, that is what is happening.

I find myself a little sobered, though, at the thought that I am now transitioning away from crisis mode to Living With Cancer. This cancer will always be with me, and someday it will probably kill me.

But not today. And not even this year. For that I am deeply grateful.

Scanned

 Yesterday I went and got a PET scan. My scan before that (back in August) was a CT scan, the idea being that PET scans are better at judging tumor activity and CT scans are better at judging tumor size, so it's good to alternate. A PET scan involves being made slightly radioactive with an injection and then spending a long time lying very still inside a big machine that reads the radioactivity—kind of like a very big, three-dimensional Geiger counter. I'm very glad for my port at times like this, as it means I don't have to get the injection in a vein. The lab tech is also glad for my port, as it means she doesn't have to find my vein!

And now we wait. Anxiety surrounding scans is so well known in the cancer world that it's even acquired its own portmanteau word, scanxiety. I certainly felt that anxiety back in April when I had my first post-chemo PET scan, but I'm pleased to be able to report that I am not feeling particularly anxious as I await my results this time. For one thing, I'm pretty sure the results will be good—where "good" in this context means either stable disease or shrinking tumors. Only progression of the disease is considered bad. For another thing, if the results are bad, then I really want to know so that we can take defensive measures.

I'll let you know how it turns out!