Thursday, February 20, 2020

Seeing positive

This blog is already more than fifty posts old, but it’s not anywhere near its end.  I’m in for the long haul, until the cancer has been beaten and I can walk free.  I can imagine no other outcome.  With my eye on the distance, I sometimes forget to cherish the small steps.  This is not good.  A wise man once said not to “forget to celebrate the small wins along the way”, and this wasn’t even all that long ago.  So here goes for a celebration of the positive.

When I set out on chemotherapy, my weight was a concern.  I had lost about 10% of my weight during and after surgery, then recovered most of it in the following weeks, only to lose it again during a bout of gastritis that left me rather dispirited.  They do chemotherapy on strong people only.  In the end I made it, just a couple kilos short of my normal weight.

I have since gained these couple of kilos and maybe half a kilo more.  If that doesn’t sound much, it is for me.  My weight is steady no matter what I eat.  Gaining weight is unusual – and probably entirely due to my legs building muscle thanks to the rides on the trainer.  I’m surely in better physical shape now than I was three months ago.  This is something to celebrate.

And who gains weight during chemo?  Most people weaken and shrivel, and it’s the oncologist’s call to pace the sessions such that the patient survives.  I’m breezing through the therapy and am happy and grateful about this.  I also celebrate the fact that I’m not nauseous and can eat whatever and however much I want.  Life is good.

Life is so good that I’m considering entering a race along the river in a few weeks.  It’s 13k, not a huge challenge, but also not something cancer patients usually do.  I don’t like running but could imagine running the race just to make a point.  Problem is that I will have my pump when the race is held.  On the other hand, I’m also riding my trainer with the pump.  Where’s the difference?  I might float the idea with my oncologist next time.

My blood values are just fine.

I also celebrate my blood.  Before each chemo session, half a milliliter is drawn from one of my fingers for a quick check.  One expects the red cell and platelet count to shrink throughout chemotherapy.  I show both symptoms but lose my red cells only slowly.  My platelet count is low but still within the bounds or normal values.  My immune cells are just fine.  All of this is not a given.

It’s also not a given that I haven’t caught an infection yet.  It’s flu season, a new coronavirus is on the prowl, and my children bring all sorts of germs back from kindergarten and day care.  In spite of all these dangers, my somewhat compromised immune system is holding up and fighting off whatever it encounters.  Let’s hope it does a similarly good job with the cancer cells that might escape the chemo.

Tuesday, February 18, 2020

Three to go

I had my fourth-to-last chemo session today.  The remaining three are already planned.  The two coming ones on Mondays two weeks apart, and the last one on a Friday with a slightly shorter recovery period.  Why this nonsense, you might ask.  I will have to go to the hospital on a Sunday to have the pump removed.  Do I not have anything better to do on a Sunday?  I might, but the next day I’m scheduled to fly to San Francisco to teach at a crystallography course at the Stanford synchrotron.  If history is anything to go by, this will be the best transcontinental flight ever.  The day after the pump is removed, I’m always so tired I can’t do anything else but slumber and sleep, and what better to do on a cheap economy seat?

Where was I?  Oh, yes, the fourth-to-last session.  It was like all the sessions before it, uneventful and not painful.  The nurses inquire how I am and have been doing and react with slight incredulity heartfelt happiness when I say that everything is fine and I have nothing to complain about.  Then they hand me the anti-nausea pill, which I probably don’t need, but who am I to argue with kind and compassionate nurses about instructions they receive from a somewhat more remote and abstract doctor?  I’m happy the nurses run the show.

During my first chemotherapy session, I got a strip of contraband anti-nausea pills, capsules imported from Germany (and apparently not officially available in Switzerland) that were designed to release their active ingredient over an extended period of time.  One capsule covers an entire day.  I forgot to take them after the second session and suffered no ill effect.  Since then, they’ve been out of my mind.

The only time I got nauseous was yesterday when I visited Technorama, the Swiss Science Center, with my daughter.  The winter holidays over, the girl should have been in kindergarten, but the teachers were on a one-day training course.  Can anyone explain why such a training course needs to be scheduled right after instead of during the holidays?  Do teachers really get as much time off as the kids get holidays?  In Switzerland, this would be twelve weeks (two weeks in winter, two weeks around Easter, five weeks over summer, two more weeks in fall and a week + holidays over Christmas and New Year’s), more than twice a normal Swiss employee gets.  This can’t be real.  But then, why not schedule training during school holidays?

Anyway, I took a day of compensation for the trip to Thailand, which had taken place on a Sunday, and took the girl for a day out.  Influenced by the gospel according to Peppa Pig where George gets this for his birthday, she wanted to go to a museum.  We have the Swiss Children’s Museum right in front of our house, but this wouldn’t be much of a day out, plus she’s been there already with after-school care.  I wanted to go to Zurich instead.  Lots of museums there.  Unfortunately, the vast majority is closed on Mondays.  The tram museum was open and would have been a good choice, but then Flucha suggested Technorama in Winterthur, not far from Zurich, and we were on our way.

Entrance to Technorama (modified from © Falk Lademann CC BY 2.0)

Technorama consists entirely of exhibits you can touch, try out and play with.  It’s a cool place to discover science when you’re a bit older than four and have the mind for it.  Nevertheless, the girl was happy to play in the mechanics section and discover the magic of mirrors.  We even attended a presentation of gases featuring a mighty bang or two.  The undisputed highlight, though, was the total perception vortex (which would be a nice name for the contraption if it hadn’t already been claimed by Douglas Adams).

The vortex is a dark tunnel about five meters long and two-and-a-half meters in diameter.  Near the bottom of it runs a narrow walkway with handrails.  The walkway is a metal grid you can look through.  The tunnel itself is cylindrical.  On the black walls of the tunnel is a spiral of bright glowing stars, like a cartoon Milky Way.  The spiral rotates one way, then another.

Inside, without a fixed reference point, you lose all connection to reality.  I stood on the walkway, the spiral changed rotation, and my body was quite violently thrown against the railing of the walkway, as if it were the (immobile) walkway that had changed its rotation.  There was no way for me to keep upright without assistance.  After two journeys through the tunnel, I was profoundly sick, in my belly and in my head.  The girl, in contrast, loved it.  She wanted to walk through again and again, and walk through it she did, in stark contrast to the slinking along the railing that I performed.

It was only on the train back home that my nausea subsided.  A day later, after the ninth chemo session, it didn’t come back.  I’m blessed with a lack of side effects that is as lucky as it is sometimes disconcerting.  At the end of the day, I’m not complaining.  I now know for a fact that I will fly through the remaining three sessions like a mid-classement rider on a connecting stage between the Alps and the Pyrenees.

Thursday, February 13, 2020

Out in the snow

At least one reader of this blog will probably not be surprised that my resolve to stay away from the cold didn’t last long.  It wore off over the two days that followed my initial excursion into the snow.  By Wednesday afternoon, I was ready to rent a board.  Flucha encouraged me in this change of mind.  “How bad can it be?”, she asked.  “Get a three-hour-lift ticket and have some fun.  Your hands are going to survive.”

This sounded sensible enough.  I almost walked down to the one sports store plus snow gear rental place in town when I realized that my fingers would probably be the least of my worries.  With the effort of keeping my aging body on the board, I should stay reasonably warm.  More concerning were two rarer effects of the cold that I had noticed when riding my bicycle.

At a certain speed, when the air flows around my glasses and tickles my eyes, tears form that blur my vision.  Blinking is the instinctive solution to this.  This wipes away the tears and clears the view.  As an effect of oxaliplatin, the cold sinks its teeth into my closing eyelids and paralyzes them.  I cannot fully open them again.  It’s as if they were frozen half-shut.

Seeing becomes difficult.  A continued urge to blink to clear the eyes only makes it worse.  I can’t see this being any better (but potentially much more dangerous) on a board on a bumpy piste unknown to me than on a bicycle on a paved road I’ve ridden a hundred times.

Then there’s something I’ve experienced only once when I rode my bike to work on a particularly frosty morning.  The cold air I breathed attacked my throat and slowly closed it.  I had to slow down on the steepest uphill part of my commute because I couldn’t breathe enough air.  This was quite scary – until I realized that I wasn’t suffocating – and is not something I want to repeat on an unknown mountain.

Instead of riding a board, I took the girl sledding this afternoon.  We took the lift up to the middle station and then lunged down the sledding run, a groomed track steep enough for lots of serious fun and wide enough for little serious risk.

The girl squealed with excitement as I tried to keep our little plastic sled on track.  This took all my focus.  Only at the bottom did I realize that I had had no problems with my eyes and no problems breathing either.  My hands were as toasty as they should be in their heavy gloves.

Tonight, it is snowing as if all the celestial snow cannon were pointed at Braunwald.  Tomorrow, I might yet rent a snowboard – for the first proper day in the snow in 13 years.

Turns out I didn’t go snowboarding after all.  The day was beautiful, especially in the afternoon, and a ton of fresh snow promised lots of fun, even if it wasn’t Utah powder.  But the boy was slightly sick and needed attention.  Flucha and I took turns, and in the afternoon I went sledding again with the girl.

Tuesday, February 11, 2020

Time out

From the decadence of an upscale family resort in a remote corner of the Swiss Alps, I thought I would have plenty of time to read and blog.  I brought two books – one of them the thousand pages of Armenian resistance to slaughter by the Turks at Musa Dagh – an Economist and countless scientific papers on my laptop.  The resort offers supervised activities from morning till late and plenty to do and discover for the kids.  One day into our five-night stay, all I’ve done is written this post.

View from our hotel room towards the upper Linth valley.

With the daughter registered for ski school in the mornings and the son   much like his father   not particularly fond of the cold, I have to accompany the rest of the family to the lifts and take the boy back to the hotel when he starts whining about his misery.  This will probably be after about twenty minutes.

I then go to the pool with him where he impresses me with his fearlessness, the total opposite of the pansy he’s in the snow.  He jumps into the deep end all by himself.  His head goes underwater for a few seconds before he’s being pulled back up by his floaties.  That’s when I grab him to blow the hair from his face.  His eyes twinkle with glee.  Again, he shrieks.

Then it’s afternoon.  The boy sleeps while the girl is off doing god knows what god knows where.  She has a way of finding us when she needs to.  I’m sitting on a sofa by the bar reading or writing as I had intended all along.  The peace doesn’t last for more than an hour.

With all the money spent on this holiday that’s everything one could hope for but not exactly cheap, I should be enjoying the mountains and the snow.  As one of the adults would probably need to stay near the kids – a two-year-old isn’t exactly independent enough to enjoy random hours away – this singular pleasure doesn’t tempt me much.  The other thing is my hands.  A few days after the most recent chemo session, my fingers still haven’t recovered from the effects of oxaliplatin.

Even though it’s only around freezing today, I bundled up like an explorer destined for the South Pole, with layers of fleece and functional membrane from nose to toes.  I start sweating immediately, but as soon as I set foot outdoors, my hands tell me to go back.  The tips of my fingers start tingling and lose their connection with the rest of my body.  When the boy starts whining about how cold he is, I’m happy to carry him back.  The pool is warm.

I’ve always had a low tolerance for the cold.  Back in Utah, I went snowriding three or four times a season, not for lack of money or enjoyment of first tracks in fresh powder but because of cold hands.  There was one day in Park City when the temperatures was around 15° F (too cold to contemplate in Celsius) at the base of the mountain in the morning.  I took the lift to the top and suffered through a million miniscule icicles back down as fast as I could.  I spent the rest of the morning in a coffee shop, reading the newspaper at the cost of half a lift pass.  What am I doing here in the Alps in the middle of winter?

Thursday, February 6, 2020

Good news

Maybe I was a little too blasé the other day when receiving the results from the latest CT.  Of course I didn’t expect bad news.  I’ve got bad news to last me a lifetime.  I don’t need any more.  But not everything that isn’t bad news is no news, as was the tag I attached to the previous post.

Having a clean peritoneum is unambiguously good news and should be celebrated as such.  When I started out with chemotherapy, one of the things the oncologists warned me about was that metastases in the peritoneum tend to be resistant to chemotherapy.  Something to do with a lack of circulation, if I remember correctly.  Google would probably know better, but I’m loath entrust my questions of health and disease to the web.  Too many human-interest stories of no relevance to my case.

Anyway, when the surgeon removed half of my colon and thereby gave this blog its name, she also scraped my peritoneum clean of all visible metastases.  She was quick to emphasize afterwards that this doesn’t mean there are no metastases left in the peritoneum.  It just means one can’t see them.  The chances are high, she continued, that there are micrometastases that will grow with time.

A considerable amount of time has now passed.  It’s four months since my operation.  That nothing has grown inside my peritoneum can mean either of two things.  It could be that there were no micrometastases left in the peritoneum in the first place.  This is rather unlikely.  It could alternatively mean that chemotherapy is doing its thing, even where it wasn’t expected to be too successful.  Both of these scenarios are good news.

It’s too early to get excited about anything, but there’s no reason to be ambivalent either.  Things are going well.  I’m doing good.  Life goes on.

Tuesday, February 4, 2020

Summing up

Yesterday I got what might be the last doctor’s bill from last year.  It wasn’t something I had to pay.  The hospital had sent the bill straight to the insurance company, which had paid for it.  The document I received simply alerted me to the fact, and charged me a bit over 100 francs for the pleasure of staying in the hospital for seven nights.  The bill was for my hemicolectomy.  The total was around 8,000 francs.

The hospital bills around my cancer add up to nearly 37,000 francs.  I had to cover 3,400 francs in deductible and copay and another 2,800 francs to have health insurance in the first place.  Maybe I’ve lived in Switzerland for too long, but the amounts don’t shock me.  The total seems quite reasonable given the amount of treatment I’ve received: a big operation, three CT scans, one PET-CT, two days full of exams to come to the initial diagnosis, another hospitalization for gastritis, and five sessions of chemotherapy.  I can’t exclude that more bills will arrive for chemotherapy (The bills are short on detail and don’t arrive in order.), but the bulk is probably through.  I have a few doctor’s bills and receipts from the pharmacy for drugs I didn’t take to hand in to the insurance, but that won’t make much of a difference to the total.

I’m a firm believer in insurance for things that can ruin you.  Otherwise you’re better off just paying for each incident.  My health costs – accumulated over four months only – wouldn’t have ruined me last year, but it’s easy to see how they might if things escalate.  Having mandatory health insurance like in Switzerland is keeping premiums down and gives everyone access to the care they need.  It’s probably good luck that I’m living here at the moment.

Another stroke of good luck was that we moved in June.  Not that this was even remotely on my mind, but the move brought me much closer to a big hospital.  Going to chemo sessions would have been a bigger pain from the old flat, where I might have had to travel for close to an hour.  Now, the city bus or my bicycle take me to the hospital in ten minutes, and from the hospital it’s a 15-minute walk back to work.  It couldn’t be much better.

The accounts for 2019 are done but the journey continues.  Tomorrow I’ll start the eighth chemo session.  This fills me with a bit of joy.  It means there are only four more to go, which isn’t bad at all.  I’m almost done, though it won’t be until later that I’ll know whether the treatment has been successful.

A day later, getting ready for another chemo, I learned from the doctor that the CT had been negative.  No new growth in the peritoneum.  All clear.  This is how I like it.

Sunday, February 2, 2020

Different things

On Thursday I got my third CT scan in less than half a year.  I didn’t receive loyalty benefits, but at least I knew what to expect.  The basic process goes like this.

You’re invited into a radiation-safe room with the machine, a big white torus.  You take off some clothes and remove everything made of metal, and lie down on a narrow bed.  The radiographer connects a pump to one of your veins to inject the contrast agents when the scan is taken.  She then leaves the room to start remote-control operation.  The bed slides into the torus that’s big enough to almost touch the ceiling.  Inside it, invisible to you, an X-ray source and, opposite it, a detector speed up and spin around an axis formed by you lying there.  You keep your eyes shut.  Upon prompting by the radiographer, you hold your breath, and images are taken.  The contrast agent is injected and more images are taken.  The contrast agent heats your upper body immediately and strongly, a feeling that’s not entirely pleasant.  Then it’s over.

This all happened on Thursday, but things were slightly different.  I had to report to the oncology nurses before the procedure.  The punctured my port and connected a bit of tubing.  This would get me connected to the pump by the CT scanner more easily.  Walking from the oncology outbuilding to the radiology department with a foot of clear plastic tubing dangling from my chest was a bit of a strange experience.  Before I was admitted to the CT room, I had to ingest 600 ml of a clear liquid without a distinct taste, a second contrast agent.  I consumed this over half an hour.

The purpose of the scan was to check that no new clumps of transformed cells had appeared inside me since I started chemo.  Remember that I was all clean inside and free of visible cancer thanks to a successful operative resection of the existing growths.  I have no answer as to why they would make an appearance now, halfway through an aggressive chemotherapy program (though the issue of cancer cells becoming increasingly bacteria-like and acquiring resistance would make for an interesting post if I managed to make inroads into the literature), and I’m not worried about a possibly positive result.  On the other hand, a negative result wouldn’t mean much either besides everything going according to plan.

The CT scan went according to plan, and I was released an hour after I had started on the contrast fluid.  The next two days should have been easy.  The second half of the seventh chemo session had started and with it the period of recovery when any remaining discomfort fades away and life briefly returns to a conventional normal.

This time it was different.  Something had hit me.  Maybe it was the contrast agent I drank before the scan.  For two days afterwards, my gut went through violent upheaval.  I was never far from the toilet and frequently produced soundscapes I wouldn’t have wanted to share with anyone.  There was lots of liquid and lots of gas, and no more detail is needed.  It took until Saturday for things to calm down.

Now it’s all good, and maybe better than that.  My nose seems less bloody than in a long time.  The cold might finally be gone.  Tonight I rode the first proper climb on my trainer, a prolonged stretch a nick under 7% steep.  It felt good, and I wished it had gone on longer.  On Wednesday, I’ll start the eighth chemo.  It will be more of the same, but things will again be slightly different.