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!

The Mesothelioma Symposium

Until this past weekend, I had never met another person with mesothelioma (in person rather than just on Zoom). But now, having attended the International Symposium on Malignant Mesothelioma held in Philadelphia last weekend, I have met lots of them. It was really good to hang out with people I have such an important thing in common with, as well as to learn from them and from the various presentations. 

Attending the Meso Symposium

Here are some things I learned or was reminded about:

1. I am doing really well. My response to treatment has been very strong, and that is not always the case. A lot of people mentioned that they would not have guessed that I was a patient.
2. I have a great medical team. Various attendees mentioned being frustrated with their doctors and finding it hard to get good care. My heart goes out to them.
3. I can't count on staying well. This disease is infamous for coming back after apparently successful treatment. Even radical surgery is not considered curative.
4. There are other treatments, some already available and some coming, that I'll be able to try when the time comes.
5. Now is the time to think about what I still want to do with my life and to set about doing it. Between (1) and (3), it looks like I will have some relatively healthy time, but it's completely unclear how long that will be. One patient panelist recommended having a five-year plan, and that sounds about right. Life may throw the plan way off, but it's important to have one.
6. On a more practical note, we learned that the gut microbiome is important to getting good results from immunotherapy and that eating fiber helps people get those benefits. So I'll be eating my fruits and vegetables!
7. We also learned that yoga, acupuncture, and various other complementary practices can help with symptoms and side effects. There's starting to be real scientific evidence in this regard. I'll be doing my yoga more diligently and considering acupuncture.

Quiet, But Only on the Home Front

The leaves are turning, the goldenrod is spent, and even the asters are looking a bit old. As for me, I continue to do as well as can be realistically hoped. At every point, if I look back a month or more, I can see that I have continued to make progress.

The asters are on their last legs

Things are very quiet around here, though, in the absence of medical crises. Away from the hustle and bustle of a job or young children, the larger world can get to feeling a bit remote. It's as though there are two, not quite intersecting worlds: one larger one, in which everyone is way too busy and stressed, and one smaller one, in which people are isolated and even under-stimulated.

Gita, meanwhile, is solidly in the busy world. She has been applying for lots of jobs this fall and is now getting a number of interviews. She also spoke at a rally in Atlanta last weekend in defense of science funding. Anand and I are immensely proud of her and look forward to finding out where she will land next. 

All Vaccinated

I asked my oncologist a while back if I should be getting vaccinated for respiratory illnesses and, if so, which ones. His answer was, "Yes, all of them." So that made four vaccines to schedule this fall: pneumococcal pneumonia, RSV, covid, and flu. My primary care doctor advised me to get two of them two weeks before an immunotherapy session and two of them two weeks after. So I did that, and yesterday I got my second two shots. 

So now I'm good to go! As cold and flu season comes on, hopefully the worst I have to fear is a cold. With cancer in my lung lining, I really don't want to get any infection in there.

Otherwise, things have been very quiet around here—perhaps too quiet. I am no longer so sick that it takes all my attention, but I don't have all that much stamina either, with the result that I am left somewhat at loose ends. From my mesothelioma support group, I gather than fatigue is pretty universal for those of us getting immunotherapy (or chemo, for that matter). Finding right-sized activities is going to be a challenge.