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.

Wear Blue!

Wear your pin if I've given you one.

Tomorrow, September 26, is Mesothelioma Awareness Day. As a rare and aggressive cancer, mesothelioma steals the lives of individuals who have been exposed to asbestos. Here are some suggestions for how to observe the day:

1. Wear blue, the color of mesothelioma awareness.
2. If I have given you a blue ribbon pin and you can still find it, wear it (or make yourself a blue ribbon from actual ribbon).
3. Watch Niagara Falls turn blue at 10:15 PM EDT (2:15 AM Saturday GMT).
4. Learn about mesothelioma and see what the Mesothelioma Applied Research Foundation is doing in honor of the day.
5. Support public funding of cancer research.
6. Check out my fundraising page at the Mesothelioma Applied Research Foundation. Gifts to the foundation between now and September 27 at 12:00 PM EDT will be doubled, up to $10,000. 

In personal news, I'm back from a visit to Gita in Atlanta. It was a very easy trip, just 4 1/2 hours door to door. It was good to get away and to see Gita and her cats without it being too exhausting.

Armchair Travel

If you had only two years left to live, how would you choose to spend your time? I suspect that "with loved ones" is the most common answer to that question, and I suspect that "travel" is another strong contender. There is so much to see in this big, beautiful world, and one would want to see more of it in the time one had left.

What the travel answer misses is that if you have only two years to live you probably don't feel up to doing all that much. Trust me on this one.

This is not to say I have only two years to live. In fact, I have no idea how much longer I have. But the question of how to spend my remaining time is a real one. I too wish to spend time with my loved ones, and I too would like to see more of the world before it's my time to leave it.

In pursuit of the first goal, I have booked a flight to go visit Gita before my next infusion at the end of the month. This will be my first solo travel since I got really sick. It should be fine, though: it's a short flight and the airport is only 20 minutes' drive away. I'm very much looking forward to getting away and spending time with Gita and her cats at her place in Atlanta.

The second goal is harder (at least, beyond Atlanta). I am simply not up to going to see Angkor Wat or Machu Picchu or most of the rest of the glorious sites (and sights) of the world. So how does one make the most of one's time if one has so little energy? 

One answer I have recently discovered is documentaries. I can't go to Angkor Wat or Machu Picchu, but I can watch documentaries about them. Specifically, I have found a series put out by the Smithsonian Channel on Paramount+ called Aerial X, where X is the country or region that is the subject of a given film. The footage is all shot from the air, at varying heights. So far Anand and I have flown (virtually) over Ireland, Great Britain, New Zealand, Greece, and Italy. I've been able to bask in stunning scenery and vibrant colors. We're even getting ideas for which few places we might manage to get to IRL (in real life) if and when it becomes more feasible. It also means I've learned to use the remote to the TV Gita installed in our living room back when I got my diagnosis.

"Looking Well"

I had a another big weekend, if recent months are taken as the comparison class. On Saturday we went to visit a site in Laurel, Maryland known for its dinosaur bones. Two Saturdays a month, members of the public are encouraged to search for fossilized bones there. We didn't find any, and we got pretty hot, but it was a welcome change from sitting at home feeling tired.

A life-size model of a baby dinosaur; the adults were immense

On Sunday the weather was pleasantly cool, and I went for my longest walk yet post-diagnosis. Then in the afternoon we went to an excellent concert of Beethoven violin sonatas. The pianist was Anand's choir director, so we saw a lot of his fellow choir members. It was good to see people I knew, and many of them were kind enough to say I was looking well. 

I will admit that I was left scratching my head a bit over that. Why is looking well so important? Does it count if one major reason I'm looking well is that I'm on an appetite stimulant? What is the relationship between how I look and the deadly cancer that I'm carrying inside me—and which I feel at every deep breath or twist of my torso? Will people understand if I need to sit down or leave an event early if I don't look sick?

I don't mean to call out the wonderful people who are glad that I'm doing so much better than I was. I'm sure glad I'm doing better than I was, too! The fact that they care means a great deal to me. It's just that living with cancer is complicated, and I'm new to this version of life. My cancer oscillates between something that is still so new that I can briefly forget all about it, something whose threat has retreated over the past months, and something that is the most important fact about my present life, whether it shows on the outside or not. 

Like I said, it's complicated.

When "Orphan" is a Good Word

Often mesothelioma treatment comes in cycles. A patient is diagnosed and receives first-line treatment, after which they may be stable for a period of time. (This is where I am now.) But then the cancer almost invariably comes back, triggering either a return to more aggressive treatment, such as chemo, or a switch to a new treatment. And then the cycle repeats, with stability for a period of time again if the patient is lucky. 

What this means is that we mesothelioma patients are always eager to hear about new treatments coming along. Even if our current treatments are working well (as my immunotherapy is), we expect to need other treatments in the future. We also continue to hold out hope that one of those new treatments will break the cycle and effect a cure.

The drug approval process is a lengthy one, taking years. One way that patients can receive new drugs faster is to participate in clinical trials. Another thing that can speed up the approval for drugs that treat rare cancers is "orphan drug status."

It sounds terrible, doesn't it? Actually, though, orphan drug status is designed to help bring to approval and production drugs that treat rare diseases, officially defined in the US as diseases affecting less than 200,000 people nationally. Developing these drugs is not financially profitable for drug companies, so the government steps in and gives the drug orphan status, which comes with various financial incentives. So when a drug that is being developed for mesothelioma receives orphan status, we meso patients rejoice.

That's what happened recently to a promising new drug presently designated as VT3989. It is the first of a new class of drugs called a TEAD inhibitor and is about to go to Phase III trials. This drug is expected to be particularly effective against tumors that have a certain mutation known as NF2 (which mine does), and so far it looks like the drug is well tolerated by patients. 

So I am cheering on this particular orphan, hoping that it will be approved by the time I need a new treatment drug. Or if it isn't, that it will still be in clinical trials and I'll be able to get it that way.

Another exciting development on the horizon is a generalized mRNA vaccine that works together with immunotherapy drugs like Keytruda to help the immune system target cancer. It has shown great promise in mouse trials for a broad range of cancers. Hopefully it will continue to show promise and move on to human trials soon, if not in this country then in others.

For now, though, the Keytruda (immunotherapy) is doing the trick for me. I am very easily fatigued but am otherwise feeling pretty well. It occurred to me the other day that I could describe my present situation as "chronic cancer." These two words are not usually found next to each other! It's just one more weird aspect of my life lately. But I'll take it over many of the alternatives as I hope and wait for a cure.

P.S. If you would like to join me in sponsoring mesothelioma research, visit my fundraising page at the Mesothelioma Applied Research Foundation: https://curemeso.givecloud.co/fundraisers/amalia-gnanadesikans-fund-for-research.

A Very Local Desert

By coincidence, a kind friend gave me a plant of my choice just as I was mulling over options for what to do with a bed in which I have so far failed to grow anything much. The chief reason for its lack of productivity seems to be the way the eaves of the house overhang it and block the rain, creating a miniature desert. Since the bed does get some direct sunlight despite the overhang, I decided to try planting hardy succulents. The eastern prickly-pear cactus (Opuntia humifusa) is actually native to this region, so I got a couple of those and added a few hens-and-chicks (Sempervivum sp.). There's lots of space left for the cactuses to grow and the hens-and-chicks to spread. We'll see how it goes!

My new succulent bed

If I'm planting a new garden bed, does that mean I'm on top of things in my garden? Most definitely not! But it's more fun to add new things than to weed old ones yet again. Hence the succulent bed!

I have been feeling fairly well lately, and I have now regained all the weight I lost in 2024 and the first weeks of 2025. But my strength and stamina are still lower than I'd like. It makes me very unsure about what to take on and how much to commit to. Hopefully that will come clear over time. Meanwhile, I'm walking and doing yoga to try to get stronger.

Strong Enough to Survive a Big Weekend

I've just had the busiest weekend yet since my diagnosis, and I made it through! We attended a wedding in Virginia at which we saw many old, dear friends. Wisely, we decided to stay the night there rather than trying to drive home late the same night. Then on the way home we stopped off to visit some more friends. 

Getting ready to attend the wedding

All in all, it was a big, social weekend—the more so because Gita came to share it with us.

Gita came too.

I had not managed such a large social event for over a year and a half. When I tried to attend a family wedding last year, I ended up having to stay in the hotel room feeling sick while Anand and Gita went to the wedding. So the weekend was a triumph: a happy time with the bride and groom, a chance to catch up with old friends, and a demonstration of significant improvement in my health.

Then yesterday I had my next Keytruda (immunotherapy) infusion. The infusion sessions are much shorter now without the chemo drugs, and the aftermath is much less unpleasant. I'll stay on the Keytruda for two years, my oncologist says, after which it would not be expected to do me any further good. Hopefully the effects will stick and/or there will be new treatment options coming along at that point.