My Other Goal Completed

I wrote a post back in March about my goals for the year. My primary goal is to survive the year, and I'm very pleased to be well on track for that one. My secondary goal was to see the second edition of my book, The Writing Revolution: Cuneiform to the Internet, through its final stages in press and onto literal or virtual bookshelves. I am happy to report that it is now out, as pictured below.

Author's copies of my new second edition

My editor at Wiley says I can share the promotional code WRRV2 for 20% off for anyone who wants to order a copy from Wiley's website.

My thanks to the folks at Wiley who helped make this second edition possible!

Thinking back to the first edition, I realize that there is a common thread between the two editions, which is, oddly enough, my mortality. I first had the idea for a book about writing systems as an undergraduate, but I didn't do anything about it for some years. Knowing that the field of linguistics didn't take the study of writing systems seriously, I thought I had better get tenure first and then write the book.

Well, life didn't turn out the way I'd planned, and instead of finding myself in a tenure-track position at a university, I found myself making standardized tests at the Educational Testing Service (ETS). Then I found myself beset with an undiagnosed illness that left me exhausted, bone-deep. I was so drained that for a while I wondered if I was going to die. It occurred to me then that I still had unfinished business: for one thing, I had not yet written that book about writing systems! I couldn't write it then, in that condition; but I eventually regained much of my health, at which point I gathered my courage, quit my job, and sat down to write. 

The question now is,  What will I write or otherwise tackle next, with the measure of health I've regained?

Good News

I've just returned from a visit to my oncologist, where I got the results of last week's scan. I had been expecting to get them a bit earlier, but they kept not coming through. Finally, at Gita's wise suggestion, I called the radiologists' office this morning and told them I needed the results for my appointment this afternoon. I stressed that it was for my oncology appointment, since I've noticed that cancer gets a person priority treatment from the medical system. They promised to expedite the report, and sure enough, by the time I got to the oncology office the report had arrived.

And the news is good! There has been further tumor shrinkage since my last scan in late April. There is some uncertainty as to exactly how much, since that scan was a PET and this one was a CT, and PETs have somewhat larger uncertainties as to sizing. Another source of uncertainty is that we don't know whether the shrinkage happened in the early part of the intervening time and was due to the residual effects of chemotherapy in my system or whether the immunotherapy drug acting alone is responsible for at least some of it. 

At any rate, it seems clear that the immunotherapy is at least holding the line against progression of the cancer, and that is the main thing. My oncologist said that outcomes are similar whether a person has tumor regression (shrinkage) or stable disease. It's progression that is bad news, and that is not at all what we are seeing.

I am relieved and overjoyed!

One thing I had been a bit worried about was the possibility that I would fritter away the remainder of my life by living scan to scan. In other words, I was concerned that I would never feel free to make plans or set goals because there would always be another scan coming within three months' time that could at any point make all those plans and goals moot. And then I would end up doing nothing with my remaining time. With this good news, though, I feel more confident that I can avoid that pitfall. I am still in all likelihood going to die of mesothelioma, but not this year. And at this rate probably not next year either. For now, that's enough to be going on with. 

So now I've got some life-rebuilding to do! A challenge in this respect is that the immunotherapy causes significant fatigue, as does cancer itself. So I will need to continue to be careful with my energies. But meanwhile I intend to have some good experiences with the energy I have!

Scanned

Yesterday I went for a CT scan, one of what will be a series of alternating PET and CT scans every three months. The CT scan shows better size and location resolution, while the PET is better at picking up tumor activity. It will be a few days before the results come back, probably. 

I've been saying "I'll think about that after my scan" to myself a lot lately. A good result of the CT scan would be "stable disease," which would mean that the cancer has not started progressing since I stopped chemo. And that in turn would mean that I might get a decent spell of what they call "progression-free survival" in which to do things, live life, and envision a future. If the result is not so good, it may mean that more chemo will dominate my near future.

Meanwhile, last week's tests all came back negative except for the blood test that said I had elevated cortisol levels. All that means, I think, is that being sick for most of a week had stressed me out! However, I continue to do much better back on the anti-nausea medication, which has the added benefit of being an appetite stimulant and thus helps me keep up my caloric intake. I can't say that I feel all that well, though—I tire very easily, for one thing.

In between spells of illness and fatigue I've tried to do some things out in the garden. My peach tree is yielding lots of peaches, though we have to cut worms (actually larval plum curculios, Conotrachelus nenuphar) out of most of them before we eat them. (At least the peaches are organically grown! Next year I might resort to pesticides.) In more pest news, this morning I seem to have gotten myself into a nest of ticks. I felt a slight tickle and looked down to find a whole swarm of nearly microscopic baby ticks crawling up my arm. At least the littlest ones don't carry diseases (I think), as they have not yet had a chance to bite anything that carries a disease. But it was an unpleasant experience nonetheless!

The first year of a good peach harvest. 

For those who have kindly asked about my tooth, it's been a situation of no big news. Neither the dentist nor the endodontist could find anything structurally wrong with it. The endodontist gave me a short course of a steroid medication to see if that would reduce the inflammation in the nerve. It did not do anything dramatic, though it might have helped a bit. The pain has lessened gradually over the weeks, however, and now it doesn't bother me all that much unless I eat something cold. Even so I am now able to eat some refrigerated foods again. I have yet to dare frozen food again, however: the summer is progressing, and I haven't been able to eat ice cream for over a month!

Challenges and Tests

The past week has been challenging. Last Thursday I woke up with a headache, and then proceeded to feel headachy and queasy and generally ill for five days. By the time I realized it was settling in for the long haul it was the weekend, so I couldn't contact my doctor till Monday. He then sprang into action, ordering tests with the thought that I might be having bad side-effects from the immunotherapy. Apparently that can happen out of the blue, even months after the last dose. He also said I should go back on some medicine that had worked wonders to settle my stomach in the aftermath of chemo but that I had recently stopped at his instructions on the grounds that I was well past chemo and doing so much better.

Luckily, the medicine has again worked wonders. The queasiness is gone, though I still feel pretty wrung out. Meanwhile, I went in for a blood test first thing on Tuesday morning and then for a brain MRI in the afternoon. In the middle of all that I also had to go buy a new cellphone, as my old one abruptly died on me.

So far none of the tests whose results have come back have been all that informative. As is typical with medical tests, I am torn between wanting negative results—indicating that I don't have the various awful things I'm being tested for—and wanting results that give useful information about what to do to fix the problem.

Before this episode came on I was cautiously beginning to look around me for things to do and ways to rebuild a life for myself after its recent interruption. Now, even with the queasiness settled, I am not up to doing much more than lying around. I really, really hope this doesn't indicate an upsurge in tumor activity. For answers on that score, I'll have to wait for next week when I have my next CT scan.

In better news, I'm getting the first ripe peaches from my young tree. And yesterday I picked one of my miniature pineapples, and we ate it still warm from the sun with our tea.

The good news: recent harvest

Retrospective: My Zebra

I am in a bad temper today, having just heard that my insurance company has refused to approve my upcoming PET scan, apparently in the belief that it was requested merely for monitoring purposes rather than evaluation for progression and ongoing treatment response. Having a PET or CT scan every three months is entirely standard for mesothelioma, so I don't know what they think they're doing and why they think they know better than my oncologist. However, it may be that they got an abbreviated version of the justification through the radiology practice, so I gave them my oncologist's number and hopefully that will get it straightened out. Hopefully.

This frustrating situation is topical today, as I had already been planning to do a retrospective post on some things that went wrong for me in the medical system in the lead-up to my diagnosis.

I'm told that medical students are trained on the zebra principle: if you hear hoofbeats outside, it is more likely to be a horse than a zebra. So they are encouraged as diagnosticians to think about horses, not zebras. In other words, they are taught to think in terms of statistical likelihoods. The more common illness will be the correct diagnosis most of the time. Horses, not zebras.

The problem comes in if you actually have a zebra, as I do. Arguably, I have something even less statistically likely than a regular zebra: an albino zebra, one might say. A fifty-something-year-old woman with no occupational exposure to the asbestos industry is not expected to get mesothelioma. Statistically speaking, her symptoms will be due to almost anything else. 

An unlikely zebra (image from Wikipedia)

For all that, there were symptoms that were missed or misinterpreted as I made my rounds of doctors last year seeking answers. I have since heard of others in whom similar symptoms were also overlooked or minimized. So I'm making a list here in the hope of being helpful to other zebra sufferers. (The list should be read with the caveat that these are my personal conclusions and I am in no way a medical professional of any kind.)

1. Unintended weight loss. This is the classic sign of cancer, but both I and the doctors thought that the struggle I was having with nausea (see #2) accounted for it. In retrospect, we should all have been more suspicious.
2. Gastrointestinal trouble. The gastroenterologist said she thought I had irritable bowel syndrome. It annoyed me at that time, because IBS should be a diagnosis of exclusion—in other words, it's only a conclusion you arrive at when other possibilities are ruled out. In retrospect, with a cancer diagnosis, I am even more annoyed. It turns out that cancer tends to cause dysbiosis, even when the cancer is not itself in the GI tract. I did get an abdominal CT scan, a fibroscan (a test of the liver), and endoscopy of the pancreas, duodenum and bile ducts, but as it turned out, that was not where the tumors were.
3. Pain in the right-hand side of the abdomen. This pain, which is what finally drove me to the emergency room, was dismissed as "constipation." It turns out that tumors of the lung or pleura (the lung lining, where pleural mesothelioma hangs out) are known to cause right-sided abdominal pain. The pain was incessant for three months but cleared up a week after my first dose of chemotherapy.
4. Pain between the ribs. This was dismissed as costochondritis. 
5. Pain when taking a deep breath. I mentioned this to my regular doctor, and she sent me to get a chest x-ray. Many cases of mesothelioma do get diagnosed from a chest x-ray, but that is only because the x-ray picks up fluid that the cancer is producing. Mine did not start producing fluid until January, just after my diagnosis. So the chest x-ray was clear.

What would have found the cancer earlier? A CT scan of the chest area would surely have done it, but the imaging I had had of the chest was not CT (it was an x-ray) and the CT that I had had was not of the chest (it was of the abdomen). Eventually a second CT with contrast of my abdomen did show pleural thickening at the base of my lung and a mass next to my esophagus. The first CT six months before did not show these, implying that the cancer was growing very quickly. However, I can't help but think that including the thoracic area in the CT scan would have picked up the cancer much earlier.

That said, most people don't have zebras, albino or not. CT scans are not only expensive, but they expose the patient to radiation. If patients were routinely given whole-body CT scans, more cancers would be detected; but some patients would get cancer as a result. It is all the more important to believe in horses rather than zebras if looking for zebras causes cancer. 

If you think you have a zebra, though, advocate for good diagnostics. Be aware that pain can be referred from one part of the body to another one, so a negative scan of the painful area may not be decisive.

If you do have a zebra, good luck to you!

Dog Days

We've reached the dog days of summer, a time that I associate with the buzzing of the annual cicadas. It's too hot and humid to do much in the garden, where the squash and the squash bugs are both trying to take over.

Aggressive but hot squash (with squash bugs)

As for myself, I have something of a medical hiatus just now, with no appointments for a few weeks. My endodontist appointment last week found no structural issues with my tooth, so I'm trying a steroid medication to reduce inflammation of the nerve. The tooth is slightly better, but I'm not sure it has much to do with the medication, from which I might have expected more dramatic results. So who knows, I may need to schedule another appointment to fill the gap. Clearly I can't be allowed to go too long without appointments!

The tooth situation comes with an insurance wrinkle. I have met out-of-pocket limits for the year and no longer have to pay medical bills this year. But because of the way insurance works here in the US, dental insurance is a separate matter. So now I have to pay again for the tooth! At least I didn't have to pay for the prescription, as that is a pharmacy matter, which falls under my medical insurance.

My next scheduled appointment is for my next PET scan, which will show us how I am doing on immunotherapy alone. (This is in contrast to my last scan, which showed what the combination of chemotherapy and immunotherapy did for me.) Until I get the results it will be a bit hard to entertain clear ideas about the future, but both my oncologist and I are optimistic that the results will be good. In this context "good" means an absence of disease progression, not necessarily shrinkage or remission.

If it Ain't One Thing...

So far this week I've had two episodes of sitting in a big chair and being asked my birthday. The more recent and more expected one was my immunotherapy infusion, which went off without a hitch yesterday. It's certainly more pleasant to just get immunotherapy without chemotherapy! It turns out my blood counts look pretty good and are recovering from the earlier chemo. Overall, my oncologist continues to be pleased.

The other chair episode was on Monday. I had been having intense tooth pain over the holiday weekend, so first thing on Monday I went to see the dentist. He was unable to find the source of the pain either by visual inspection or on an x-ray. Thus I have gone from being a medical mystery (as I was all last year before my mesothelioma diagnosis) to being a dental mystery. Apparently there are fancy 3D CT scanners that can find issues that normal x-rays can't, but that requires a referral to an endodontist. I don't think I'd ever even heard of an endodontist before. 

Luckily, I've learned how not to bother the tooth (no cold liquids, only gentle movement of the head), so I'm managing while I wait for my endodontist appointment next Monday. 

Meanwhile, life got a bit exciting here for a while today. When I got out of the shower this morning I noticed that there was smoke wafting past the window. A closer look revealed a tree fallen onto the power lines and burning where the wood touched the wires. I called the power company and then, at their suggestion, the fire department. It was my first time calling 911.

The view out my window this morning

A fire truck showed up promptly, and the three men and I waited around for a while for the power company people to come and turn off the power. Just as they were going to do so, the transformer blew with a huge popping sound. With the power out, the fire went out; and with the fire out, they could cut down the tree and restore power quite quickly. 

Attention from the fire department and the power company

It made for some non-health-related drama, after which I went back to scheduling healthcare appointments, confirming those appointments, and filling out paperwork ahead of appointments.