Here I sit in the Cancer Infusion Center writing this post.  I’m really glad I can bring my laptop with me to mitigate the boredom.

I’m finishing my first round of three treatments on consecutive days; and then I’ll have a couple of pills to take at home tomorrow after breakfast.

The first day, Wednesday, started with drawing some blood in the lab.  The young woman in the lab was really good at her job, and I didn’t even feel the needle going in.  I have no end of respect for real expertise.

Each first treatment in a session, I was told, would be giving me two drugs, the first taking about half an hour to drip, and the second about an hour; but they gave me more than that.  After inserting the IV (in an awkward spot on the back of my hand because the nurse couldn’t find a better vein), there was some flushing of the IV with saline solution, then rather a lot of some milky solution administered with a syringe that took maybe about five minutes.  Then more flushing of the IV, the two drugs that I was told about, and more flushing.

I wound up being stuck there in the hospital for about four hours with basically nothing to do, mostly waiting for the lab results to come back before they could start on the real business.  I hadn’t had any lunch that day in the hope of mitigating the nausea that’s sometimes a side effect of chemo; but I learned too late that it doesn’t show up until at least the day following, so I needn’t have skipped it.  I stopped by a Waffle House on the way home to have a big second breakfast for supper and I wasn’t able to watch the Cardinals’ game until the top of the third.

<aside>
I don’t watch enough TV for cable to make sense, so I watch the games on mlb.com’s Gameday feature and listen on the radio.  (I confess to watching Baseball Night in America on Fox because of their monopoly, but I stay away from anything Murdoch otherwise.)
</aside>

Yesterday was quicker.  I had been told that I’d get just the one drug that takes about an hour to drip (I get that one on each of the three days); but what with administrivia, inserting the IV, all the flushing, and yet another drug that I hadn’t been told about, I was there for a couple of hours.  Fortunately, I had thought to ask whether it would be OK to bring my computer with me so that I’d have something to do.  They said that that would be just fine, so I was able to spend the time writing yesterday’s post.

Today should be a repeat of yesterday, except that the nurse had found a really good vein in a good position and could tape up the IV really well after the treatments, so I was able to keep the IV in overnight, and I didn’t need to get stuck again today.  Also, the first extra drug only took about five or so minutes and was administered by syringe, so I’ll have only about one hour of dripping which started at 15:15.  I can hope to be out of here by 16:30, give or take.

I probably won’t have anything more to say about this first round unless something bad happens.  So far, I’ve had none of the usual side effects of chemo, not even a wee bit of nausea or diarrhea, and I currently have no reason to expect it to start.  (I am having frequent hiccups that started around quarter to four this morning.  That’s not listed as a side effect in the blurbs I was given about the drugs I’m getting; but I found a paper about hiccups on (IIRC) nih.gov (I can’t remember the URL and wouldn’t be competent to critique it in any event) which mentions in a table of side effects that hiccups is a possible result of taking of chemo drugs, but it’s probably not a problem unless it continues for several days.  I’m not having that side effect as I write this.)

I’ll have three more rounds of three treatments on consecutive days, probably Wednesdays through Fridays.  I have an appointment with the chemo doctor next Wednesday where we’ll set up the schedules for the final three rounds; and I’m going to express a really strong preference to begin earlier in the day so that I can get home at a reasonable hour.  It’s already known that my trip to Hawaiʻi will interrupt the sequence such that I’ll have two or three extra weeks after the penultimate round.  The doctor has said that he’s not particularly worried about that, but he’ll want more lab tests after I get back just to make sure that everything is still in order.

So far, I’ve been tremendously fortunate.  The cancer was caught in an early stage before it had metastasized to the lymph nodes (which I’m told is unusual for small cell cancer), so there was no big deal about my refusing major thoracic surgery (which I would have refused at my age in any event), and I’ve had no symptoms that I’m aware of (aside from the hiccups that I mentioned above) from any treatment or from the cancer itself.  We’ll see whether that continues…

The Reason

This old fart needed to get with the program and buy a digital camera; so I broke down and got a pretty good one for use during my trip to Hawaiʻi in November.  That will include a round trip on Amtrak’s California Zephyr through the Sierra Nevada and the Rockies, both in daylight, the latter including a ride along the southern bank of the Colorado River through Glenwood Canyon.  On the return trip, I also hope to catch the lights of Denver way down below after exiting the Moffat Tunnel a bit after dark.

Some folks might also find interesting the mostly open-air KOA airport and the quick rise from sea level in Kailua-Kona up the mountains of the Big Island.

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The Sale

On my way to my chemotherapy appointment today, I stopped by a camera store in St. Louis County, Schillers Camera, that’s not far out of the way.  It didn’t get off to a really good start, though:

Me:  Would it be possible to find a digital camera on which I could use some screw-on lenses from my 50-year-old Pentax 35mm SLR?

Sales clerk:  LOL!

Actually, he was very polite and understanding; but the clear answer was “not easily and probably not worth it”; so in addition to the regular lens, I’ll probably want a shorter lens and a fisheye for taking pictures of my bedroom on the train, and a moderately long zoom for scenes outside the train.  Another requirement is the ability to copy the images directly to my laptop without going through anybody’s “cloud”.

The camera is a Canon EOS Rebel T7.  I opted for the “Premium Kit” which came with two lenses:  an 18-55mm zoom, which is supposed to be wide angle to normal, and a 75-300mm zoom, that should be good for shots of the train from outside and views of the mountains in the distance, along with some niceties like a camera bag and a battery charger.  I also bought an 8-16mm fisheye zoom just in case I need a super-wide angle for pictures of my Zephyr room from the inside.  Are all lenses zooms these days?

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The Test

So here’s a trial run just to make sure I remember how to take pictures. 😎

I’m also learning how to copy the images to my laptop.  With one exception, that was really easy…just pull the SIM card out of the camera and stick it in an adaptor that plugs into a USB port on the laptop.  On Windows, it magically comes up as drive D:.  I haven’t tried to mount it on my Linux partition yet.  (Friday, 08:00:  just plug the SIM card and its adaptor into a USB port and it magically shows up as a mount point on Ubuntu Linux.)

The problem was that I couldn’t get the SIM card out with my fingers.  Fortunately, the Infusion Center’s lab had a small hemostat that they graciously allowed me to use for the purpose.  I have a really small hemostat at home that will now become a regular part of my camera equipment. 😎

The entrance to the Cancer Infusion Center is next to the emergency entrance;

but I don’t normally use that.

[trying out the fisheye] I park in the main garage (on the left), not far from the main entrance (on the right), so that I can leave my car out of the sun or rain.

From there, I have just a two or three minute walk, all under cover, to where I’m supposed to check in.

When they get around to me for treatment, I’m supposed to sit in what is thought to be a comfy chair while I get my drugs;

but the nurse said that it would be OK for me to sit in a regular chair to write this post; and she graciously provided me with one of those bedside tables that they have in hospitals.

(The boxy thing that connects by a short cable to a USB plug is the SIM card adaptor.
The black box with a button on the viewer’s left is my Verizon WiFi hotspot.)

I hope to have more interesting photos to show you in the future, at least by the time of my November trip.

Yesterday I had the first of five radiation treatments for my cancer.

A bit over a week ago, I lay down in what I gathered was basically a CAT scanner.  I was lying on a couple of bags that they filled with, I guess, some kind of fluid that hardened, forming a kind of half cocoon which would keep me immobile during the treatments.  They then did a scan to generate data that would be used to program the machine that would actually administer the radiation (something like an industrial robot capable of precise movements).  Thursday was a “dry run” to make sure that the machine would perform as expected; then yesterday was the first actual treatment.

You don’t feel the radiation.  The radiologist explained to me that the beam would have about the same power as a dental X-ray, but would take longer to administer the required dose.  You just lie there relaxed and unmoving, except for normal breathing, for the fifteen or so minutes that it takes.

To mitigate the boredom, I mentally recited the lyrics to Gordon Lightfoot’s “Canadian Railroad Trilogy” and “The Wreck of the Edmund Fitzgerald”; and just as I was starting on “The Balad of the Yarmouth Castle”, they were done.  I made it home in plenty of time to catch DW News on the PBS World Channel. 😎

I’ll have four more treatments, Monday through Thursday; then I’ll start chemo on the 6^th.

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The radiation machine (I should probably ask what the correct term for it is) was interesting.  The radiation is generated by a roughly disk shaped thing with about an eighteen inch diameter, maybe a bit more, that looked something like this [from Wikipedia] although the rest of the machine was quite different.  Opposite that is a flat thing that, I guess, notes where the other side of the beam is to provide feedback for proper aiming.  The whole thing rotates around you, presumably to zap the cancer from different angles so that they don’t kill the tissues that you want to still be hanging around. 😎

Inside the disk were pairs of pointy things that were about 1mm or so apart.  I had guessed, probably incorrectly, that the “antenna” is actually the space between the points.  There were maybe ten or fifteen pairs, all in slightly different positions so that they would be slightly out of phase with each other, giving more precise control over the directionality of the beam.  This whole paragraph could be way off the mark, though, if the radiation’s wavelength is in the millimicron range, which is what I get from the Wikipedia article.  I’ll have to ask for a more detailed explanation of what’s going on next Monday, not because I have any desire to practice medicine without a license 😎 , but because I’m a geek who’d find it interesting.

I had a bronchoscopy on Friday* looking for any movement of the cancer to my lymph nodes.  Everything looked normal, and although I haven’t seen the detailed results of the biopsy yet, I got a phone call from the radiologist’s nurse a while ago saying that there’s no evidence of additional cancer.  That’s good news because it means that the radiation treatment can concentrate on the one lump that we already know about.

I have an appointment with the radiologist tomorrow a bit after noon when we’ll work out the treatment schedule.  I’ll also have another CAT scan, I guess to make sure that the lump hasn’t moved; and I’ll get fitted for the cocoon that will keep me immobile during the radiation.  I’ll update this post tomorrow if there’s actually any more to say.

I’m glad to get moving on this.  I’ll have several radiation treatments (three IIRC); and the chemo, which will have to wait for the radiation to be done, will require four sets of three treatments on consecutive days, the four sets separated from each other by three (IIRC) weeks.  This already bumps into a trip that I’ll be taking in November by a couple of days; but the oncologist, who’ll be doing the chemo, said that he can work around that.  We’ll see…

Update 2023-08-16:  I now have a schedule for my radiation treatments starting a week from tomorrow:  six weekdays from Thursday the 24^th through Thursday the 31^st.  I’ll have about an hour and a half of driving (round trip) for fifteen-minute appointments. 8-(

I’m told that the first visit will be a dry run just to make sure that everything is working correctly; then I’ll have five actual treatments on Friday, then Monday through Thursday.

I also have some chemo appointments scheduled for later this month, but I think I remember the oncologist saying that we have to wait until after I’m done with the radiation before starting the chemo.  I’ve sent the oncologist a message asking whether we need to reschedule.

Today’s visit went pretty quickly.  They had me lie down in a CAT scanner on top of a couple of bags that, I guess, they filled with some kind of stuff that hardened around my torso.  They then did a CAT scan, I guess to make sure that they know where everything inside me is, and made some marks on my chest, I guess to make sure that they get me correctly positioned in my half-cocoon for the treatments.

Pierce R. Butler commented on a previous post suggesting that I might want to take the half-cocoon, which he called a “mesh”, home with me after the treatments are done.  It doesn’t look like what they made is something I’d ever need for anything.

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*The bronchoscopy required general anesthesia, so this extreme introvert, because he has nobody he can rely on to take care of him afterwards, had to spend Friday night in the hospital for “observation”.  I’ve never had any problem with general anesthesia, so as expected, nothing was observed. 😎

I didn’t really mind, aside from the boredom; but I thought that I was taking up a hospital bed for no good reason.  When I mentioned that to one of the doctors, he laughed and said that he’d had patients admitted for less reason than that, so I guess I’m not a bad guy after all.

I got a second PET scan* on the 19^th; and the results were basically the same as the one I’d had four months ago:  the cancerous lump hadn’t gotten any bigger, and there’s still no evidence of any spread to my lymph nodes.  It’s possible that I might have to get another biopsy of the lymph nodes just to make sure; but the last I heard, the biopsy guy didn’t think it would be necessary.  We’ll see how that goes.

Assuming that I don’t have to worry about the lymph nodes, which the oncologist I saw today said he thought was highly likely, I’ve decided on radiation and chemotherapy.

I’m told that the radiation will be something like a dental x-ray, except that it’ll take about fifteen minutes during which time I’ll be immobilized inside something that they’ll mold around my body.  IIRC, there will be three treatments on separate days, and I’ll be able to drive myself home after each one.

The chemo will be more complicated:  three treatments on consecutive days repeated three more times at 21-day intervals.  This would bump into my trip to Hawaiʻi in November by a day or two; but the oncologist said that he could work around that.  He also said that, although some folks do get nausious from the drugs that he’ll use for the chemo, very few do; and I should be able to drive myself home after those as well.  That’s important because the flip side of there being no one who depends on me for anything is that there’s nobody whom I can reasonably ask to drive me to and from the hospital and then take care of me after I get home.  (This will be an issue if I need another biopsy since that requires general anesthesia; and so I’d need to be admitted to the hospital overnight for observation.  I wouldn’t mind that except for the boredom, but it seems wasteful to me…like I was hoarding a hospital bed for what would likely be no good reason.)

If there are no lymph node issues, and if the radiation and chemo work as expected, both the radiologist and the oncologist assure me that I should retain sufficient independence and cognitive abilities to continue serving on the ISO C++ committee through next year at least.  That’s good news because next summer’s meeting in Stockholm has fallen through, and I’ve made an offer to host the committee next June or July.

I feel a whole lot better now that I have a plan.

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*This was basically like a CAT scan except that they shot me up with radioactive sugar; and the cancer cells said, “OOO, FOOD!”  Unlike a CAT scan, I had to observe a low-carb diet the day before and not eat or drink anything except water after midnight the day of the test; and it took about 45 minutes of my just lying around to get the sugar distributed around my body.

Introduction

I have a telephone appointment with a cancer surgeon on Tuesday, and I’ll probably be referred to an oncologist who can discuss various treatment options; and since I’m more comfortable with the written word than with the spoken word, principally because I can fix my mistakes before others know that I’ve made them 😎 , I want to write a short post to get my thoughts together in (I hope) some cogent way, and maybe to help the doctors be prepared with objections if they think I’m on the wrong track.

It’s possible that they’ll want me to communicate on-line using something called “MyChart”, but the messages that I can send are kind of like what I imagine tweets to be except for allowing more characters, so I’ve split this into four sections that will easily fit into four MyChart messages.  In any event, I’ll try to keep it short.

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My goals

First of all, since I don’t believe in the supernatural, I’m not afraid of being dead:  it seems highly unlikely to me that there will be any me to be dead.

But I’m guessing that the process of dying won’t be any fun; so I think I’d like that to happen in some controlled way rather than, say, being surprised by a heart attack.  At present, I think I’d want to let the cancer take its normal course, eventually in some kind of hospice care where they keep me as comfortable as is legal in Missouri (most definitely a red state).

Also, since I’m a fairly extreme introvert, I don’t have anyone that I’d be selfishly leaving behind.

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My questions

What I’m hoping for are guesses, for various treatment options, about how much time I have left 1) to be sufficiently independent that I can travel to meetings of an ISO standards committee that I serve on and 2) to retain sufficient cognitive abilities (e.g., not all hopped up on pain killers) that I can still use my computer.

– I’ve already made all the reservations for the trip to Hawaiʻi in November.

– I’ll probably just Zoom in to the Tokyo meeting in March in any event because I wouldn’t want to sit in an airplane long enough to get there.

– I’d like to make one or both of the Summer and Fall meetings in 2024 if I’m still around then.

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Bottom line

I understand that surgery is the best option to let me die of something other than cancer; but like I said, that’s not my goal.

Can I make any reasonable guesses about how much longer I’d have a reasonable quality of life given other treatment options (including doing nothing at all)?  I’m not nearly as good at math as I’d like to be, but I understand some elementary statistics.  If I can get median, mean and standard deviation, I’d know what to do with that.  Alternatively, if I can get min and max along with probabilities that those numbers are close, I could deal with that as well.

With that information, I think I could make a rational decision about what I’d want to do and to make plans for it.

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Update 2023-07-12:  as expected, the surgeon couldn’t really talk about anything except surgery; but he did refer me to a radiation guy with whom I have an appointment in a couple of days.

Since writing this post originally, I’ve made an offer to host a meeting of the C++ standards committee next summer (the plan for Stockholm has fallen through); so there’s now some urgency to decide on a course of treatment, possibly including doing nothing at all, that will give me a good likelihood of still being active enough for a year or so to do all the necessary administrivia.  We’ll see…