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.

Fictional Mothers

I've just read yet another book with a dead mother. Earlier this year, in the months immediately following my diagnosis, I would have found such a book too hard to read. Nowadays I'm not screening my reading material so carefully, and I'm finding dead mothers everywhere, from Cinderella on down.

It's an effective plot device, giving protagonists challenges to overcome; but I can't help reflecting on the average life expectancy for a fictional mother as opposed to a real one. The difference could be dangerous.

Anand and I watched a movie the other day with—you guessed it—a dead mother. In one of the flashback scenes, the mother tells her daughter that she is going to die. "It's come back," she says. The illness was never identified by name, but clearly we are meant to understand it was cancer. The daughter urges the mother to get aggressive treatment and to travel to Germany, where there are supposedly newer treatments. The mother refuses, saying that there is nothing to be done and she just wants to live her last days in peace.

And there's the problem. That's how Hollywood portrays cancer. It's the mother-killer. It's not a disease that you can fight. Fighting it is presented as both hopeless and painful. 

If I didn't know better, I might believe that.

For anyone reading this blog who might get a cancer diagnosis: don't believe the stories! Cancer is often survivable; and even when it is not, treatment can prolong not just life but meaningful life. New treatments are being developed, and they do not leave you wishing you were dead. For once, the truth is better than fiction.

Infusions and Rabbits

Just now I was listening to a radio program that was discussing the health benefits of kindness, both for the giver and the receiver of the kindness. Apparently, there's something called the rabbit effect, which was first noticed by the scientific community when a group of rabbits that were being fed an unhealthy diet managed to stay healthy because of the loving attention shown to them by a particular postdoc. Other rabbits fed the same diet but looked after by less attentive people suffered the expected poor health.

I was reminded that I have much kindness to be grateful for.

First, there's the readers of this blog.  The supportive messages you leave in the comments make my day even if I don't respond to each one. Then there's the fact that, together with many others, you helped raise over $46,000 for the Mesothelioma Applied Research Foundation in the 48 hours surrounding Mesothelioma Awareness Day. That's almost a full year's worth of one of the research seed grants that they make. Surely a cure is coming!

Secondly, there's my great medical team. Yesterday I went in for my immunotherapy infusion, and I was reminded again of what a caring and kind bunch oncology nurses are. They are some of the bright jewels of our world. 

My oncologist continues to be pleased with me, and he suggested some medication changes that may leave me feeling a bit less tired. That would be good! I have felt frustrated recently at my levels of fatigue.