Quiet

It's been very quiet around here the last few weeks. Perhaps too quiet. About all I have to report on the health front is that I have developed a radiation burn on my back where the protons went in. It's like a bad sunburn. Hopefully it will ease soon.

In other news, Proton the kitten is growing fast and is a source of great joy and, occasionally, anxiety (see picture). He is very good at snuggling but not so good at using the various scratching pads and posts scattered around the house—even when these are dosed with catnip. He seems to be immune to catnip, and the furniture is suffering as a result.

Proton on top of my grandfather clock, seven feet up

To Canada

Back in July, Anand and I looked at the calendar and noted the dates of my proton beam treatments, my next immunotherapy infusion, and the start of his semester. Between the second and third of those items we found a free week, so we booked ourselves a flight to Nova Scotia to see my parents.

To be honest, the trip was a challenge, and if I could have waited a bit longer past my proton radiation treatment before traveling I would have done so. I still feel tired and weak a lot, and it is difficult for me to be out and about, where places to sit down, to lie down, to retreat from the public eye, or to find a bathroom are not as readily available as at home.

It was good to see everyone, though. There were lots of family members besides my parents to catch up with as well. Pictured is one of the horses from my family's horse tour business (an old photo, but still relevant).

Horse tours with Trot in Time

Every time I go to Nova Scotia I know that it could be the last time I will see my parents. This time my mother, who has Alzheimer's, forgot at one point that I was her daughter. That was a strange experience. Most of the time, though, she recognized both me and Anand and even asked after Gita.

Now we are home, and I have a paper to write up based on the talk I gave in June. I have a bit of a break from treatment, with no treatments scheduled in September. My next immunotherapy infusion is scheduled for October 1.

Finished

As of last night, I am finished with my proton therapy!

It was a bit complicated getting to that point, though. In fact, it was nearly 11:00 PM by the time we got home last night.

First we had a flat tire on the way to the treatment center. We tried to fix it with the tire-fixing spray can, but the damage was too great for that. Finally we just proceeded cautiously the rest of the way to the treatment center. I went in for my appointment, and Anand contacted a mobile tire fixer. The person came very promptly, and the whole episode ended up as less of a disaster than I feared. I was very glad, though, that I was not alone trying to deal with that and treatment at the same time. I wasn't even late for my appointment.

They were late for me, though. I had to wait for over an hour before they called me in. Then, when it got to the point when they were actually going to shoot the protons into me, something went wrong with the machine. They kept telling me to hold my breath but then telling me I could stop holding it just a few seconds later. This went on for some time. I lay there wondering whether this was some special treatment for the final round or whether the machine was broken and they were about to tell me I had to come back the next day and try again. Finally, much to my relief, the machine worked, and I was done.

So I got to ring the bell. I'll admit I felt a bit different ringing this bell than I did ringing the one after chemo last year. Completing a second course of treatment like this drives home the persistence of mesothelioma. I'm finished with this treatment, but I'm not finished with the disease.

Ringing the bell

For now, though, no more breathing through a snorkel while lying motionless in a machine! No more malaise-inducing radiation! I may well have fatigue for the next few weeks, but I can handle that. After a while (I'm really not sure how long—the radiation has to finish its work first), I'll get a scan and we'll see how well the protons did their job.

Over Halfway!

I am now over halfway through my course of proton radiation. I am so much looking forward to having it over! Today's session was uneventful, but I have to confess that I really don't like getting the treatment. I have to breathe through a "respiratory gating system" that involves having my nose pinched off and breathing through a snorkel-style mouthpiece while lying motionless. I hate to have things in my face that interfere with my breathing. There's a reason I never go snorkeling! But it's all in a good cause, and I only have four more treatments to go,

Here is a picture of the apparatus. When I actually get the treatment the cot rotates ninety degrees to situate me under the machine. The blue thing under the sheet at the head of the cot is a personalized head and armrest made to my specific measurements.

The proton beam apparatus

Meanwhile, the feline Proton continues to bring solace and amusement as well as danger to the houseplants.

Proton with a houseplant in his sights

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.

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.

Scans Beget Scans

I had a CT scan last week, and the results were mostly good, where good means the tumors are not growing. But the main tumor just might be a little denser than it was before, so I'm being sent for a PET scan to see if it's becoming more active. It seems there's always something to worry about with mesothelioma. And lots of scans.

I told my doctor that I have to be well enough to travel to England in late June, as I'm scheduled to speak at the Grapholinguistics in the 21st Century conference in Reading. He says the CT scan results are no threat to that plan, so I have gone ahead and bought my ticket. I'm very much looking forward to the conference!

Meanwhile, it's hard to tell if the acupuncture is doing anything or not. If it is, it's pretty subtle. My oncologist says that that's what most of his patients find if they try it, while a few get more dramatic results. At the very least, it isn't doing any harm. 

It's been a little over a year since I finished chemo. In celebration I harvested the first kumquat from the little kumquat tree I bought as my first chemo plant. I cut it in half so Anand and I could share it. It was good, with a surprisingly sweet rind.

My first kumquat

Acupuncture

I've just started to get acupuncture in the hope that it will help me fight nausea and low energy levels. I've learned that cancer centers often offer acupuncture as part of an integrative approach to treating the whole patient. It does not in any way replace conventional therapies, but it can help with side effects and symptom relief. 

So I'm giving it a try. Nothing earth-shattering has happened so far, after two sessions, but I may be feeling a little better. We'll see how it goes. Even if it only has placebo value, that would be useful.

Meanwhile, spring is advancing. The temperatures have been strange, though: unseasonably hot for a few days and then much, much colder. Today we're expecting near record-breaking heat, while next Monday is predicted to be 35° F (19° C) cooler.

I do love spring, though. It's the season of recovery and hope.

Spring is advancing.

The Attention of Important People

They say that an ancient Chinese curse states, "May you come to the attention of important people." At first glance it looks like a blessing, but it turns out to be a curse.

I can't help thinking about this supposed curse as I navigate the healthcare system. Things get done much more quickly and attentively when you have a cancer diagnosis and have thereby gained the attention of medical specialists. But there's a risk in that, as I recently experienced.

My most recent scan raised a question entirely unrelated to my mesothelioma. That finding led to a search for a kidney stone or other potential blockage (like a tumor), which in turn led to a painful week with a stent inside of me, followed by another painful day after the removal of the stent. It all turned out to be a wild goose chase: there was in fact no blockage. If I had had any idea how painful the whole process would be, I would have refused the testing and waited either to develop symptoms or for my next scan to show whether it was going to be an ongoing finding or not. But the important people said I should do it just in case, and I was all too aware that my body can malfunction in significant ways. At least the episode is now over!

In cheerier news, spring is coming on quickly. I do love spring!

Happy Spring!

Atlanta

Thanks to everyone who has written with news! It's been great to hear from you.

I returned on Sunday from a trip to see Gita and her two cats in Atlanta. (One of the cats, Circe, is in the picture.) I've missed all three of them since they went home last May.

Cat and mouse

We had a fairly quiet but pleasant week. It was already getting warm in Atlanta, so Gita and I planted potatoes, peas, and Swiss chard. We also went to a sale at a second-hand book store at which we got to fill a large canvas bag full of books for only $20. Then on Saturday some of her friends came over for tea.

Unfortunately, things went badly on the way home. We didn't take into account the partial government shutdown, so I didn't realize that the security line would be over an hour long. (I later realized there's a way to check for that online, but it was too late by then.) After a very anxious hour and a dash for the airport train and the gate, I missed my flight by a whisker. They rebooked me, but through Kansas City, which got me home six hours after I was originally scheduled to arrive. 

So it all worked out in the end, but meanwhile I spent a long time feeling anxious, weak, and vulnerable. I still feel much the worse for the stress and fatigue of it all, and I am not at all sure I am up to any more traveling. For now, I am going to stay home!

Boring

It's official: I've become boring. Not only does my condition still seem to be stable, but I have no further medical appointments, tests, or infusions until mid-March. 

What to do with my copious spare time? I've taken on the reupholstery of an antique chair and (less productively, but pleasantly) done some jigsaw puzzles with Anand of an evening. I'm also planning a trip to see Gita. 

Getting inside an antique chair

An activity for quiet evenings

The notable thing that's missing from my activities is you. Enough about me! How are you? What is going on in your life? Write and let me know!

One Year On, Stable

Today is the first anniversary of my first cancer treatment, and on this symbolic day I am very relieved to be able to say that the CT scan I had this past Thursday shows stable disease and even some shrinkage compared to my last CT in August.

It's a little more complicated that that, though. First my CT scan had to be postponed from Monday to Thursday because of the snow we had on Sunday (pictured). Then the radiologist who read the CT images enumerated a whole list of little tumors in addition to the main mass—little tumors that I thought had disappeared, as they had not been mentioned on my last CT report. So this was a bit of a good news/bad news situation. Good news: your tumors are stable or smaller. Bad news: you have more tumors than you thought you did. My oncologist reassured me yesterday that the little ones are not active anymore (as per the PET scan last time), so while the news of seven extra tumors is a little off-putting, it is not in fact the bad news that it feels like.

The snow plow came on Wednesday.

Going to get a CT scan is a three-step process. First I go to the oncology office on the fourth floor to get my port accessed. Then I go down to the radiology office on the first floor, where they say, "You have a port? Wonderful! That makes it so much easier." I lie on a bench for a few minutes while they inject me with a contrast medium (though my port) and run me through the machine. Then I go back to the oncology office to have my port de-accessed. 

I was sitting in the office waiting to get my port accessed on Thursday when a woman from the billing side of the oncology practice pulled me aside. There had been a mistake regarding my health insurance, she explained, and an erroneous bill had been sent out. "Don't worry," she assured me, "you don't owe the $54,000. Your balance is actually $0. " Yikes! A good thing I wasn't there about my heart.

Operation Reduce Regrets

It's a new year, and my cancer has been stable lately, so it's time to launch Operation Reduce Regrets. The idea is to use the time of relative health that I presently have in ways that will leave me with the fewest regrets when the cancer starts to grow again. That means making a special effort to spend memorable time with family and friends on the one hand and to complete projects that personally mean a lot to me (like my punctuation book) on the other. Ideally, I would do some of both without exhausting myself too badly. 

An iguana, posing for Operation Reduce Regrets in Puerto Rico

The first major undertaking in Operation Reduce Regrets was a trip that Anand and I took to Puerto Rico last week. We visited Old San Juan and the rain forest in the eastern part of the island, each for a few days. Traveling is difficult for me because it's so fatiguing, but we promised each other before we left that we would just enjoy being there together rather than feeling like we had to see or do anything specific. We almost kept our word. It is very hard to travel somewhere interesting and then have to stay holed up in one's room resting for much of the time. So I both pushed a bit too hard and spent a lot of time resting. But we did manage to see and do some interesting things and to soak up some sun in January. Most importantly for Operation Reduce Regrets, we made some new memories together, the lizards (see picture) and the singing coquí frogs (not pictured—they come out at night) among them.

It was good to see the water and soak up some sun.