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!