Milestones

This week we're celebrating our wedding anniversary and Gita's birthday.  We didn't manage to do all that much to celebrate outwardly, but inwardly I am very grateful for each such milestone for which I am still here. And hopefully there will be time and energy for bigger celebrations in the future. It's hard to believe, though, that so much time has gone by! I still have the mug I got from my parents-in-law when Gita was born.

My mug is having a birthday this week!

In another, smaller milestone, I got my first post-diagnosis haircut yesterday. I went and sat in a big, fancy chair while someone did things to me—oddly like going for my chemo infusions, but no one asked me for my birth date and no one stuck me with needles. So it was oddly normal. Or normally odd, take your pick. 

Retrospective: Communication Missteps

I had intended to go to a local No Kings protest yesterday, but I wasn't feeling well enough to and spent the day resting instead. Anand went, though (with the pictured sign), as did Gita in Atlanta.

I was all ready to protest, but...

I think I overdid things this week. I've been feeling so much better that it's been a little hard to rein myself in. I could feel the fatigue building on Thursday and Friday, so I guess I should have paid better attention. Another time I'll stop and rest a bit earlier.

Meanwhile, I thought I'd share some thoughts that have accumulated along the way on my cancer journey but have not yet made it into this blog. 

I have been lavish in my praise of the medical staff I have encountered so far, and with reason. However, there are a few ways in which medical communication has gone wrong. I'll take the opportunity here to vent about them. 

1. Toxic positivity. This one is my particular bugbear. As I came out of the minor surgery to implant my port, I happened to mention to the attending nurse that a friend of mine was having surgery the same day but for prostate cancer. She remarked that that was a more serious surgery. "Yes," I said, "but my prognosis is more serious." This was absolutely true. The prognosis for pleural mesothelioma is much, much worse than that for stage 1 prostate cancer, even now that I am in partial remission. But still, she scolded me for saying it, on the grounds that it was too negative. As they say, denial is not a river in Egypt. And forcing it on people who are suffering is outright cruel.
2. Reflexive Cheerfulness. This one can be nearly as bad as toxic positivity but is less intentional and therefore more easily forgiven. When I called the oncology office to schedule my first round of chemo, my world had just imploded, and I was feeling very ill. The scheduler and I agreed on a date for the appointment, and as we were wrapping up the conversation she said chirpily, "Have a great day!" I'm sure she didn't mean anything hurtful and was merely reverting to her normal conversational script, but it struck me that people who work for oncology practices should learn to avoid such reflexive cheerfulness. It can land badly.
3. Automated Cheerfulness. This one combines the frustrations of reflexive cheerfulness with the particular rage that comes of dealing with an unfeeling machine. When one of my infusion appointments approaches, I get an automated reminder in my email that begins, "We're exciting about your upcoming appointment!" Well, I am not excited. I am grateful beyond words for my chemotherapy and immunotherapy, but "excited" is never a word I would use about the experience of receiving it. 
4. Automated Assumptions. This one brings more rage against the machine. When I go to see my cardiologist, I get a report from the visit on my way out. There is always some boilerplate prose at the end about heart-healthy behaviors, including exercise and weight loss. "Limit your daily caloric intake to 1800 calories," it advises. Limit calories? With cancer? Seriously? Don't they know that cancer kills by starving its victims? By the time I started treatment I had lost nearly 20 pounds, and I wasn't overweight to start with. Fortunately, I have gained a lot of the weight back—by ignoring this advice!

Cancer Survivors' Day

June 1 was National Cancer Survivors' Day, though around here it was observed this past Saturday, June 7.

What makes a cancer survivor? Do you have to be in remission to qualify? This is not a question I used to wonder about, but it turns out that what it takes to be a cancer survivor is to have had a cancer diagnosis and to still be alive. Hence I am a five-month cancer survivor.

It sounds like I'm on a roll, right?

In honor of the day there was a kind of street fair in the parking lot of the building where my oncology practice and infusion center are located. The various booths were devoted to businesses and charities that work with or provide for cancer patients. The booths really were varied: Sprouts, the healthy grocery story, was giving away free food to cancer survivors, and one of the charities explained how they take cancer patients sailing in Chesapeake Bay. Yet others were promoting services such as acupuncture, physical therapy, or (soberingly) hospice.

My wristband got me free brownies from Sprouts.

Some booths were devoted to a specific cancer, like breast cancer or colon cancer. Not surprisingly, given its rarity, there was no specific mention anywhere of mesothelioma.

The event was informative, so I'm glad I went. Toward the end, though, I stood too long listening to a woman at one of the booths talk about her cancer and her charity's fundraising efforts, so I had to go home and go to bed. It turns out surviving Cancer Survivors' Day was a challenge in itself.

Stampeding Elephants

Yesterday Anand read out to me a sobering post he found on a mesothelioma Facebook group he belongs to (I don't myself use Facebook). A woman asked why, given that she was seeing mesothelioma patients mention being years past their diagnosis, her own father lived only 14 months past his diagnosis in 2019. The question provoked a flurry of responses from bereaved family members who shared that their loved one lasted only five months past diagnosis, or four weeks, or in one case, three days.

It made for a chilling litany as Anand read out the replies. We say that a sudden chill means that someone is walking across our grave. If so, this was more like a herd of elephants stampeding across my grave.

An important detail in the original query, though, was that the woman's father was diagnosed in 2019, the year before the first immunotherapy drugs were approved for mesothelioma. At that time, 14 months' survival was around average for pleural mesothelioma patients who received treatment, although figures for average survival times have always masked a lot of variation in the individual cases. Since 2020, more people are living longer than that, mostly thanks to advances in the area of immunotherapy. Since my immunotherapy seems to be working well for me, I am now optimistic that I will be one of them.

Meanwhile, I attended my online support group for mesothelioma patients in active treatment on Wednesday evening. As always happens, I came away sobered all over again by the force and persistence of the disease but also inspired by the courage and persistence of my fellow patients, most of whom have had the disease longer than I have. Not all of them are getting good results from the current crop of immunotherapy drugs, and not all them can tolerate those drugs.

More and better options are still needed to combat mesothelioma, which brings me back to a topic I raised a couple of weeks ago. If you are able, consider donating to my fundraiser at the Mesothelioma Applied Research Foundation. They fund important foundational research in mesothelioma and also provide a range of services for patients and caregivers, including the professionally moderated support group I attend.

For those who have already donated: thank you from the bottom of my heart! 

Some would-be donors have had their credit cards rejected when they tried to give, so I asked the Foundation to look into it. They checked that their system was working and concluded that the problem must have occurred because the donor's credit card company suspected fraudulent use. The Foundation is not a large, well-known charity, and most of my readers have not used the site before; these two factors together would flag a donation as suspicious in the eyes of the AIs monitoring card use for fraud. If this happens to you and you can spare the time, contact your credit card company to request that the payment go through. Once again: thank you, thank you, thank you!

On Our Own Again

On Saturday Gita loaded her cats into her car and headed back to Georgia. Although it leaves us feeling bereft, it's time for her to get back to her own house and her own life. Her help was an absolute godsend these past few months!

Circe checks out a rest stop on the way to Georgia

Gita's departure leaves us with just two cats again rather than four. The two pairs of cats never did fully accept each other, and so now Artemis is missing Gita but not her cats. Hekla has already started staring at me in the mornings again, waiting for me to feed her.

To cheer ourselves up, Anand and I went out to lunch at True Food Kitchen, a restaurant that specializes in healthy food that I had noticed in a local magazine. These days I have to be very careful about what I eat, as does Anand (though for different reasons), so we haven't been able to eat out much. But Anand and I were both able to find something appealing to order at True Food Kitchen and enjoyed our meal very much. This was another welcome sign of life returning to something closer to normal!

Meanwhile, June is here, and I have no medical appointments on my calendar this month. I'm now going six weeks between infusions, and since the last one was late in May, the next one won't be until July. My next scan will also be in late July or early August. It feels very strange—but also strange that it feels strange—to be going so long between appointments!