Yet Another Delay

Proton therapy depends crucially on accurate targeting. Planning the targeting is a lot of work, with the result that I've had yet another treatment delay. On Wednesday after my treatment I had an appointment with my radiation oncologist. He said that the scan I had on Tuesday showed further growth. Probably not cancerous growth, he was quick to reassure me, but more likely swelling from inflammation. That is not necessarily a bad thing, as it means my immune system is getting involved to fight the cancer. But it means that he had to recalculate my treatment plan so as to target the tumor in its new size. So I had yesterday off of treatment while the recalculation was happening. I was relieved not to have to undergo treatment that day, but unfortunately it means I just have to go in for a make-up treatment at the end. The doctor was also thinking of switching me to an every-other-day schedule, given how large a dose of radiation I'm getting (it turns out this is in fact quite large) and the fact that the first few doses made me sick. I've been OK since, though, so hopefully I can just get the treatments and be done with it. After this afternoon's treatment I should be half finished.

I am continually amazed at what a balance the proton center maintains between assembly-line treatment to get as many patients treated as efficiently as possible and highly individualized treatment that is tailored to each person's tumor, constitution, and body shape. It's impressive.

Win Some, Lose Some

I was originally scheduled to get proton treatment every day this week, but I had to cancel Monday because I was feeling sick. The fact that I got sick after two treatments had me worrying that the protons were going to make me sicker and sicker as the treatment schedule went on—and then how would I manage to continue treatment? Maybe, I thought, it would have been better to get surgery.

Luckily, I have since been recovering, and I was able to go in yesterday for my treatment just fine. I even think I feel a shrinkage in the tumor now, since it's not hurting so much when I take a deep breath. That pain first got worse, starting on Saturday, but it is now receding as of this morning. I think it may already be better than before I started the proton treatment.

Because of missing a treatment, I now have an extra treatment tacked on at the end. So on the present schedule I'll be done next Thursday. I can't wait to have it over!

In other news, kitten Proton was a star at the vet's office this morning, where he went for his vaccination. Despite getting stuck with a needle, he charmed everyone there.

Proton: a winsome little star

In yet other news, the Mesothelioma Applied Research Foundation has just announced that it was able to make $850,000 worth of grants this year for research and clinical trials on mesothelioma. That is almost three times as much as they were able to award last year. Some of that is thanks to readers of this blog who have given to the Foundation. Thank you all so very much! The link to give to my fundraising page is here. These are exciting days for cancer research.

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.