Irradiated

Last night I had my first proton beam treatment, and this morning I had my second. So that means I'm already 20% finished with my treatment!

First, though, there were more delays. I was scheduled for a 5:30 appointment yesterday evening, but just as I got there one of the four machines (and one of only two that could do my particular procedure) went down. Then one of the other patients had an issue that caused a delay as well, with the result that it was 7:30 by the time I finally got my first treatment. I was beginning to think it might never happen!

The treatment is not painful, but it is uncomfortable. I have to lie totally still with my arms above my head. (This is not the ideal time to be coping with a recovering frozen shoulder, but I'm managing.) I have to wear goggles and a nose clip and breathe through a snorkel. Then when I get a certain cue through the goggles I have to hold my breath. This is because the tumor is at the base of the lung, and if I just breathed normally they wouldn't be able to target it. The targeting is very precise: before they send the protons into me they first do a quick CT scan of the relevant area to see exactly where the tumor is. Once they've done that, they send a couple of batches of proton radiation into me. 

The machine that delivers the protons is very impressive. I almost expect it to transport me onto a spaceship or something. For all it's not science fiction, it is a remarkable piece of modern nuclear engineering. 

I don't feel anything yet, either good or bad. Eventually I'm likely to feel fatigue, and I may get pneumonitis (inflammation of the lung), given where the tumor is. I still feel a stiffness from the tumor in my side when I take a deep breath. I'm not sure whether to expect that to go away or not, since there will be scar tissue there even after the radiation has done its job. 

I haven't been all that productive in any other endeavors. Getting the protons has absorbed virtually all my attention. Little Proton the kitten has been absorbing all the rest of it.

Proton absorbs attention

Delay

I was supposed to start proton treatment today, but the radiation oncologist called yesterday afternoon and said that the scan I had that morning showed so much growth of the tumor that the treatment plan has to be redone. So I won't be able to start until Thursday. In other words, because I really need the treatment, the treatment is delayed. It's a bit hard to wait. It's also frustrating to reflect that if the insurance approval had gone through the first time, the cancer wouldn't have had so much time to grow.

Meanwhile, little Proton is a source of joy. The other cats—Artemis and Hekla—are still not comfortable with him in the house, but we're taking introductions slowly and hopefully it will work out in the end.

A bundle of joy

Protons!

I am very pleased to be able to report that my proton beam treatment has been approved and scheduled! In fact, I'll be starting treatment the day after tomorrow.

First, though, I'll go in tomorrow for yet another scan. They want to make sure they've accounted for the tumor's recent growth in the treatment plan. Then on Tuesday I'll start the actual treatment. It will be every day for about two weeks, after which I can expect to experience quite a bit of fatigue and maybe even pneumonitis (inflammation of the lung). Hopefully any such side effects will settle down after a couple of weeks.

I was cheered enough by news of my upcoming treatment that I went ahead and got myself a radiation kitten. Last year I got myself chemo plants. This year it's a radiation kitten. His name is Proton.

Proton, the radiation kitten

Some of you may know that I already have two cats. I love Artemis and Hekla dearly, but neither one of them spends time snuggling with me or sitting on my lap. I'd like a lap cat. Also, watching a kitten play will be good therapy as I recover from treatment.

I chose this kitten because he is extremely friendly and shows promise in the snuggling department.

Already snuggling

Integration into Artemis and Hekla's lives is yet to happen. Proton is eager to meet them, sending friendly little meows through the closed door between them; but Artemis and Hekla are unenthusiastic. We'll take it slowly and hope for the best. 

Treatment Postponed

I thought I was going to get an MRI soon after getting back from England and that I was then going on to get proton beam therapy if the MRI confirmed that it was feasible. In fact, I was tentatively scheduled to start treatment today.

It didn't turn out that way.

I got a call from the radiology practice saying that they'd scheduled me for the wrong MRI machine and that the next available appointment on the correct machine isn't until next Monday. Meanwhile, my insurance company baulked at paying for proton beam therapy. Hopefully the treatment will be approved on appeal, but the denial means everything is up in the air for now.

It's been over two months since the CT scan that alerted us to my cancer's resurgence, so I'm getting impatient to get it treated. Hopefully I'll have better news soon.

In other news, we've just had power restored after an outage of over 24 hours. Luckily the storms that took out the power also took out the heat wave we'd been having. Still, we slept downstairs last night to stay cool in the absence of fans or air conditioning. I'm very happy to have power again!

To England and Back

I got back a few days ago from a conference in England. Leading up to the trip I was rather nervous about it, as I had not done any travel that strenuous since my diagnosis. My last trip to Europe, a few months before my diagnosis, went very badly. (I ended up in the emergency room in Liechtenstein. I recommend the little hospital there, but it was not how I wanted so spend my summer vacation.) Anand and I decided that he would come with me to handle logistics and be on hand in case anything went wrong. As it turned out, nothing did go wrong, but I was glad for his help.

The conference was Grapholinguistics in the 21st Century, held in the Department of Typography and Graphic Communication at the University of Reading. It was brutally hot the first day, so they gave out fans along with our name tags. After the first day they moved us to air conditioned rooms in another building, much to our relief.

I gave my keynote address on the third and last day. I was a bit unsure about it beforehand, not being confident that I had the energy to give a good talk. In the moment I did find energy and focus, and I think the talk was well received.  Meanwhile, I was very pleased to reconnect with some colleagues and to meet some new ones.

From Reading we went on to Headington, outside Oxford, to visit some friends who have recently moved there. Headington is known for being the home of C.S. Lewis and also for an unusual sculpture (pictured).

A Headington landmark

We managed to see a bit of Oxford (pictured) and to take a short walk on the Ridgeway, an ancient trackway going back to neolithic times (pictured).

The Radcliffe Camera at Oxford

Walking on the Ridgeway

I also did a lot of resting. That's obligatory for me these days.

Surgery or Proton Beam?

I have now been to see both the surgeon and the proton beam radiation specialist. The good news is that they both say they can rid me of the one tumor that is acting up right now. The surgeon, whom I had consulted last year, reminded me that I have responded very well to treatment so far. He says that makes me unusually well situated for localized treatment. Normally the surgery for pleural mesothelioma is brutal and involves peeling the pleura off the lung. I would not get that kind of surgery but a much more circumscribed procedure. His encouraging words were enough to get me thinking seriously about surgery. By the same token, though, I am also a better candidate for proton beam therapy than is usually the case with mesothelioma.

So I am still (or again) leaning toward proton beam therapy, as it is non-invasive. And it being proton radiation, rather than conventional radiation, the radiation dose to the rest of my body would be slight. Protons deposit virtually all their energy at the end of their path, which is carefully tuned to be where the cancer is. So there is no exit path and very little energy released along the entry path. That sounds good to me.

Next week I'll see my oncologist, and the week after that, my consulting research specialist; then I'll make my final decision.

Meanwhile, I have already gone for a "simulation" for the proton radiation. This included, among other things, a test to see how long I can hold my breath. Breathing is a challenge for aiming radiation properly when the tumor is at the base of the lung. (There's an irony in breathing being a problem for a procedure intended in the long term to keep me breathing.) Luckily, I passed the test. 

In other news, I am looking forward to going to the Grapholinguistics in the 21st Century conference later this month. 

And I finally have blooming Canterbury bells.

Biennial Canterbury bells: Patience rewarded

Time to Feed the Meter

If you put coins in an old-fashioned parking meter, you get some time. Then after a while the time starts to run out, and to maintain your parking spot you have to put in more coins.

This is my new metaphor for mesothelioma treatment: you apply a treatment (coins), and you get some time. Mesothelioma has a nasty way of coming back, though, so after a while you have to apply another treatment. And then another.

Which is the long way of saying that my PET scan last week contained bad news: the big tumor at the base of my lung is revving up. The challenge now is to choose the treatment. So far the top contenders are surgery and proton beam therapy. I saw the proton beam specialist yesterday, and he was pretty confident that they can kill the tumor. I'll see the surgeon next week and see what he says. I am inclined to go for the noninvasive option, but we'll see what the surgeon says. Hopefully whichever treatment I go with will buy me lots of time. 

Meanwhile, it's rose season in the garden, so not all the news is bad.

I love red roses.