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.

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!