One Year On, Stable

Today is the first anniversary of my first cancer treatment, and on this symbolic day I am very relieved to be able to say that the CT scan I had this past Thursday shows stable disease and even some shrinkage compared to my last CT in August.

It's a little more complicated that that, though. First my CT scan had to be postponed from Monday to Thursday because of the snow we had on Sunday (pictured). Then the radiologist who read the CT images enumerated a whole list of little tumors in addition to the main mass—little tumors that I thought had disappeared, as they had not been mentioned on my last CT report. So this was a bit of a good news/bad news situation. Good news: your tumors are stable or smaller. Bad news: you have more tumors than you thought you did. My oncologist reassured me yesterday that the little ones are not active anymore (as per the PET scan last time), so while the news of seven extra tumors is a little off-putting, it is not in fact the bad news that it feels like.

The snow plow came on Wednesday.

Going to get a CT scan is a three-step process. First I go to the oncology office on the fourth floor to get my port accessed. Then I go down to the radiology office on the first floor, where they say, "You have a port? Wonderful! That makes it so much easier." I lie on a bench for a few minutes while they inject me with a contrast medium (though my port) and run me through the machine. Then I go back to the oncology office to have my port de-accessed. 

I was sitting in the office waiting to get my port accessed on Thursday when a woman from the billing side of the oncology practice pulled me aside. There had been a mistake regarding my health insurance, she explained, and an erroneous bill had been sent out. "Don't worry," she assured me, "you don't owe the $54,000. Your balance is actually $0. " Yikes! A good thing I wasn't there about my heart.

Operation Reduce Regrets

It's a new year, and my cancer has been stable lately, so it's time to launch Operation Reduce Regrets. The idea is to use the time of relative health that I presently have in ways that will leave me with the fewest regrets when the cancer starts to grow again. That means making a special effort to spend memorable time with family and friends on the one hand and to complete projects that personally mean a lot to me (like my punctuation book) on the other. Ideally, I would do some of both without exhausting myself too badly. 

An iguana, posing for Operation Reduce Regrets in Puerto Rico

The first major undertaking in Operation Reduce Regrets was a trip that Anand and I took to Puerto Rico last week. We visited Old San Juan and the rain forest in the eastern part of the island, each for a few days. Traveling is difficult for me because it's so fatiguing, but we promised each other before we left that we would just enjoy being there together rather than feeling like we had to see or do anything specific. We almost kept our word. It is very hard to travel somewhere interesting and then have to stay holed up in one's room resting for much of the time. So I both pushed a bit too hard and spent a lot of time resting. But we did manage to see and do some interesting things and to soak up some sun in January. Most importantly for Operation Reduce Regrets, we made some new memories together, the lizards (see picture) and the singing coquí frogs (not pictured—they come out at night) among them.

It was good to see the water and soak up some sun.

Happy New Year!

Happy New Year to all!

It was puzzle-making time at my house

So far 2026 is already shaping up to be better than 2025. By this time last year I had already had a biopsy on a "mass" detected on a CT scan and was awaiting the results. No one guessed that it was mesothelioma, but even the more likely options were enough to cause me considerable anxiety. This year my next medical event isn't until January 26, when I get my next scan. Meanwhile, I'm so glad to be holding my own!

I've decided that my major goals for the year are remarkably like last year's:

1. Survive
2. Finish my current book

What book, you ask? I've started to write book on punctuation. The working title is Parenthetically Speaking: A Short and Sympathetic Guide to Punctuation. (Feel free to chime in with the punctuation questions that most confuse or irritate you.) Unlike last year, I won't be putting the finishing touches (indexing and proofing) on a book this year, but I do hope to get the manuscript to the publisher.

In other goals, I've decided that I want to have more people on my Christmas card list next year than I do this year, so if you'd like a card from me, send me your address! 

Meanwhile, I've finished reading The Emperor of All Maladies: A Biography of Cancer. I had been meaning to read it for a few years, but it seems all the more topical now. It's a remarkably comprehensive and yet well-written and accessible work. I came away from it with a much greater understanding of just what a vast undertaking the War on Cancer has been. We have made great strides in the last quarter century, but there is still a great deal we don't understand and a large number of people whose cancers have not responded to the more advanced treatments. If you want to read it, make sure you get the updated edition, which brings the story up to 2025.

A Damped Christmas

Special Christmas greetings to all!

After a pre-Christmas wedding that we attended in upstate New York (see photo), Christmas in our house was a rather damped affair this year. Gita came down with a cold on Christmas Eve, so as we opened our presents on Christmas morning we placed an air filter between us. Otherwise, she spent several days holed up in her room, alternating between resting and knitting. So far neither Anand nor I have gotten the cold, but we may have been fighting it, as we both joined Gita in feeling pretty washed out and unambitious for several days. I did manage to make the desserts on Christmas Day, though.

Attending a Christmas-season wedding

In general, I continue to get tired very easily these days. Luckily, I enjoy reading, so I have something to do when I'm lying around. Usually I read fiction, but lately I've been reading about cancer. Last winter, when my diagnosis was new, I would not have done this: it was too sore a subject. But somehow things are different now. Thus I recently read Theresa Brown's Healing: When a Nurse Becomes a Patient, the memoir of a breast cancer survivor, and now I'm in the middle of Siddhartha Mukherjee's The Emperor of All Maladies: A Biography of Cancer. The former contained a lot of feelings and experiences I could relate to as well as a number of things I couldn't. For one thing, Brown speaks of a post-cancer life, something I can no longer easily imagine. I guess I am adjusting to my new normal. Mukherjee's book is a detailed look at efforts to understand and battle cancer. I'm at about the year 2005 in the story, and the tide is turning. Targeted therapies are coming along, which target cancer cells specifically rather than poisoning all cells indiscriminately as older forms of chemotherapy did. The checkpoint inhibitors (the kind of immunotherapy I'm on) are a few chapters in the future still, I think. It reminds me that I am very glad not to have gotten cancer any earlier. These are the days of miracles, as Paul Simon says.

On the gardening front, my cousin sent me a sprout-growing kit and some broccoli seeds. It turns out that broccoli (especially in sprout form) is full of cancer-fighting compounds. So I am happily growing things and tending my health at the same time. How's that for win–win?

Stopping Meso

One year ago today I spent the afternoon in the emergency room. Since then I've had a hospitalization, a biopsy, a diagnosis, four rounds of chemotherapy, and nine rounds of immunotherapy, with a tenth coming tomorrow. The result of all that is that for now, I'm stable. Compared to last year, I know worse things about my condition but I am receiving much better care for it. So it's complicated.

My Christmas cactus and I are both still here.

I'm learning to live with cancer, and the fear and disorientation of the first few weeks and months after my diagnosis have faded. It tears at my heart, though, when I hear of newly diagnosed patients. Each new patient experiences their own round of fear and pain. At the symposium we attended in October, we learned that people are getting mesothelioma at younger ages, even down to the age of 8. 

Unlike many cancers, mesothelioma has a specific, preventable cause: asbestos exposure. In past times asbestos was commonly used in building materials, sometimes intentionally as a fire-retardant and sometimes unintentionally as contamination of other products. Thus the fall of the Twin Towers on 9/11 released considerable quantities of asbestos dust into the air and is expected to result in an upsurge in mesothelioma cases as the latency period of 10 to 50 years progresses. My own exposure appears to be through the contamination of vermiculite insulation.

It is too late to do anything about asbestos exposure in the past, but we should be able to stop it in the present and future. An apparently innocent ongoing source of asbestos exposure is talcum powder, accounting for an increase in mesothelioma cases among women. Most talc-based cosmetics are contaminated with asbestos because the two minerals often naturally occur in conjunction with each other. Disturbingly, the FDA has recently withdrawn its proposed rule requiring the testing of talc-based cosmetics for asbestos. In other words, asbestos exposure is not being stopped. More people are going to get cancer.

What can we do? Here are a few steps to take:

1. Opt for cornstarch-based rather than talc-based cosmetics and baby powder.
2. Urge your elected officials to push for renewed FDA standards for talcum powder.
3. Support the advocacy, patient support, and research efforts of the Mesothelioma Applied Research Foundation. You can do that through my fundraising page at this link.

I know I've asked before, and many of you have responded—thank you! But if there is anyone out there who is wondering where to direct a year-end gift, might I suggest this cause? Mesothelioma should be preventable. And hopefully it will soon be curable, too!

Birthday and Thanksgiving

As I mentioned in a previous post, I've gotten a bit twitchy this year about my birthday. Medical people have been asking me my birthday all year. Then, when I answer, they inject me with something: chemotherapy or immunotherapy drugs, radioactive sugar, or CT contrast material. So it was good to have my birthday come and have it be a cause for celebration—with no injections! 

My birthday, with no needles!

Thanksgiving was also a cause for celebration. We had family and friends and lots of good food. In keeping with my custom in recent years, I harvested carrots that day. I otherwise left most of the food preparation to others, ably spearheaded by Gita.

Thanksgiving carrot harvest

Plentiful food prepared by others

We had a full house of family and friends for both Thanksgiving and my birthday. It was wonderful to see everyone, and a great joy to me to have gotten this far. I certainly had things to be thankful for on Thanksgiving, with the improvement in my health over this time last year. It was exhausting, though. I find I have very little stamina, and I keep being surprised at just how quickly I get tired. This week my priority is rest.

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.