End of the world

How preposterous is it to wallow in one’s own misery, misery that is not particularly painful or particularly acute?  How preposterous is it to contemplate self-pity when others have clearly got it much worse.  Does any one cancer register in the grand scheme of things?  Does it deserve any attention, even from the patient, when children die of hunger or cities of millions are quarantined to contain a poorly characterized but rapidly spreading virus?

I’m not particularly driven towards introspection, but sometimes I think more questions – and a record of the answers – would be quite helpful.  As I near the end of my seventh chemo session, the symptoms, weak throughout, are further receding.  Tomorrow morning, I expect them to be gone.  But what reason do I have to expect anything?

Two weeks on, I cannot recall details of the previous session.  Fatigue is the only thing that comes to my mind.  The session before that, anchored in my memory by the coincidence with Christmas, appears equally blank.  I was dead-exhausted, but don’t remember any suffering.  I slept everything off, though it took a few days.  Were there other symptoms?  I keep a blog but quickly forget what I write, and what I write is highly incomplete.

This session, I didn’t feel exhausted but just a little bit tired.  It didn’t hold me back in any way.  More serious was the digestive turmoil.  It kept me close to the toilet and alert to signals from my gut.  I ate all right and with an almost normal appetite.  The extraction of nutrients probably worked fine, but the ejection of waste products proceeded rather inconsistently.

Tonight, the upheaval seemed over.  Time to sit down for a movie and eat some treats.  I turned on Netflix to find a program to match my patchy health and the current state of the world where panic starts to be deemed a sensible response to outrageous events.  The Plague, a Spanish show, isn’t available in Switzerland yet.  Contagion has lengths in its third quarter that rule it out for a workday evening.  All other pandemic films and series seemed just a tad too dispiriting to merit consideration.  What good is the end of the world if you can’t have a good laugh?  Might as well read the news.

In March, I’m supposed to travel to China to visit partners, customers and leads.  The new coronavirus out of Wuhan doesn’t seem particularly virulent, and we have no business there.  And yet, I’m having second thoughts.  The virus pounces on people with weak or weakened immune systems – children, the elderly and the sick.  I might not like it or even believe it, but this puts me squarely in its target.  Given the current situation, this trip would not be wise and will probably not take place.  Another two chemotherapy sessions, with unspecified side-effects, seem much more appealing, even though all I do is expect nothing at all.

Seventh session

By the seventh chemo session, which ended this afternoon, I should have picked up on the routine, one would think.  I certainly think I have, but then things are always slightly different.  It turns out that my expectations are good for nothing.

When I came from the airport on Thursday, I was full of apprehension.  I had just returned from Thailand where it was warm and I felt great.  Chemo could only be worse, and it was freezing in Switzerland.  Somewhat irrationally, I was dreading what was about to come.

Things turned out all right.  I didn’t feel bad, and even rode my trainer in the evening.  The next day, I went to work to catch up after a week away, and it was all good.

Today, my pump was removed.  The last few times, this was when I collapsed with inexplicable and all-encompassing fatigue.  I went to bed early and slept twelve hours, two or three days in a row.  Today, I assembled two big beds for two still rather small children and am still cruising at 10 pm, getting the blog in order.  My digestion is playing up a little, but I’m not particularly tired.  It’s not a given that every session is worse than the one before.

This one already started better.  My platelet count was robust, my immune cells all normal.  The doctor noticed a weak infection in the thicket of the numbers but didn’t worry about it too much.  “You’re going to survive it”, she said, even with the chemo battering my immune system.

The next two sessions are planned already, the recovery time a day short of two weeks each time to get me back to the Monday schedule I started out with.  Then there’s next Thursday when I’ll undergo another CT scan.  This is to make sure I’m still clean, to rule out any growth inside me since the operation.

More sensitive, delicate or introspective people than me might freak out at this.  What is the need of a CT in the middle of chemotherapy?  The doctor half laughed it off as a routine test, but that doesn’t take away from the fact that someone considers it necessary.  Is there really a non-zero chance of the cancer growing while I fight it with toxic chemicals and moderate exercise?  That would be the end.  But can it really be?  It makes no sense to me.  Instead of questioning what I have no control over, I will now - the pump removed, the side effects all but non-existing - go back to ignoring reality, at least until Thursday.

Flying economy

At Bangkok airport, with nearly two hours on my hands, I once again did not manage to read any of the scientific publications about cancer that I’ve downloaded to my computer.  My excuse?  I just wasn’t in the mood.

The flight back to Zurich will be the last one in a while where I enjoy Gold status.  Last year I certainly flew enough to keep this status but made some booking mistakes that landed me in the wrong fare classes.  On these flights, I earned only fractions of the miles and flight segments I thought I was entitled to.  At the end of the year, with Singapore Airlines refusing to give me any miles, I remained below the requirements to retain Gold status.

Why do I even care?  Gold status sounds glorious but doesn’t mean much.  It doesn’t open the doors into business class, and it didn’t help me get any upgrades.  The main problem is that I collect miles with one airline while mostly flying another.  This sounds stupid but might still be the best way for me to fly.

My flying will thus not be much different this year and yet, there are little things that I will miss.  Most lounges are nice places to wait for a flight.  They’re oases of calm in the chaos of airports and often equipped with showers.  After taking a long walk down dusty streets in 35°C heat this afternoon, a shower was exactly what I needed before packing into into my cattle-class seat like a Tetris brick.

Gold status also lets you check more luggage and board first, which is nice when you have lots of luggage that you didn’t check.  It made traveling in economy just a little bit more bearable.  I feel like having Gold status during chemotherapy as well, with similar perks.  I was never upgraded to the head oncologist but chemo was just a little bit more bearable than it might have been.

Ok, this doesn’t properly represent reality.  Chemo has so far been infinitely more bearable than it might have been.  I’m still not looking forward to the sessions as much as I should be, given that they’re supposed to save or at least extend my life, but there’s nothing concrete to complain about.  Problem is there’s not much to enjoy in them either.  I was excited about the cycling metaphor when I started this blog but maybe flying economy is a better analogy.  You try to make sense of it.

Tomorrow morning, I will take another shower in the arrivals lounge in Zurich, my first and for now last visit to it, have a little breakfast and take the train and bus to the hospital for my seventh chemo session.  If the flight is not late, I’ll have the time to drop my luggage at home, though it would be cooler (or crazier) to arrive at the hospital straight at the airport, like an ailing dictator trying to escape his subjects' wrath in his old age.

The first questions will concern my blood values.  How are my platelets holding up?  What are my immune cells doing?  If they’re all good, therapy can start, with the main concern afterwards that I find moments of comfort among mild suffering.  It's just as if I were flying economy.

Night in Bangkok

I'm not quite sure whether I'm all right.  My nose has been running for over a month now.  I keep saying that I'm carrying a cold, but that's probably not quite correct.  I don't have a cold anymore, just a nose that produces enough mucus for a nightly Jungle Camp slime wrestling match and a cough that tries the same with less success.

From time to time my head hurts as if I weren't hydrated enough.  This might have something to do with all the minerals that I lose through my nose and throat.  Isostar is my fix of choice for this, but I don't take it with me when I'm traveling.  Normally I don't have headaches.  In fact, I never have headaches.  It's just something I don't do.  Now I also tire easily.  Something's amiss.

It would be easy blame all these little inconveniences on the cancer but that would not be consistent with my approach of ignoring it.  Denying reality is something I'm quite good at.  I think it works in my favor here.  But how do I explain the niggling pains and aches?  Better not think about them.  Let's continue as if the trip to Thailand were the most important thing.

The dust in the air turned the end of the day into quite a spectacle.  It wasn't so much night falling as day disappearing.  It didn't get much darker but visibility dropped until I could see only my immediate surroundings and a featureless infinity of polluted air.  Dusk just hung there, becoming ever more impenetrable.  The lights all around produced a ghastly yellow as they scattered on millions of tiny particles.  For a good ten minutes, it felt as if we were heading straight into the apocalypse.

The driver who took me from the synchrotron to Bangkok was having a bit of an off-day.  He drove like a champion to the outskirts of the capital and fearlessly cut into the menacing dusk, but as he got close to my destination, he completely lost the plot.  After crossing a mighty bridge a mere 15 minutes from the university I was headed to, he took off into the wrong direction, and nothing I said, increasingly pleadingly, made him reconsider.

By the time we had connected, we were almost stuck in the marshes and close to the end of the road.  In another context and another country, this could have been a scary experience, evoking images of tourists dropped by the wayside, beat up and robbed.  In Thailand, there is nothing to worry about, especially inside the vehicle of an upscale local hotel chain.

Nothing, that is, except arriving.  The university was now twenty minutes farther away than when we had crossed the bridge.  Without my phone and its navigational capabilities, we would probably have remained stranded in an ignored corner of Bangkok, by the river, out of ideas, and far away from a bed for the night.

Tight schedule

I’m too tired for the bar, but the night is still too young for sleep.  The pool has just closed, and TV is full of cooking shows.  What better way of taking advantage of the night than adding a post to this slow-moving blog?

After a ten-hour flight to Bangkok and a three-hour transfer to the center of the country, I’m in Korat for work, which starts tomorrow.  Today, I could relax a little.  The two days – and especially the nights – before departure were an eerie recap of what I experienced in November when my body shaped up for traveling just hours before my plane took off.  My body seems to know something about traveling.

On Wednesday and Thursday, I was alone with the children.  Flucha was traveling for work for a change.  This didn’t stress me.  The children are easy, and Flucha had taken out the clothes they would wear these two days and put them on neat piles for me to find them.  On Thursday evening, when we were sitting at the dinner table and everything was essentially over, I was suddenly overcome by an exhaustion as if I had herded sheep in the mountains all day.

Luckily, Flucha returned shortly thereafter and relieved me of my paternal duties.  She also diagnosed me with fever.  This is not something desirable during chemotherapy.  At the beginning, I had been warned to report to the emergency room whenever a certain temperature persisted for a certain amount of time.  The details have by now escaped me, but the background is the danger of an infection.

Since I was (and still am) carrying the cold I brought home from Singapore, I didn’t think much of it, dropped a paracetamol and went to sleep.  Going to the hospital was not an option with a business trip just two days away.  The warm weather in Thailand would do me good, I reasoned.  How reasonable it was to ignore the fever with a compromised immune system is now a moot point.  I should read up the numbers that call for immediate action.

Never mind.  I survived and am better now, though the second night was scary.  I nearly drowned in my own sweat, without fever but a body that was wet to the touch.  On Saturday, I was better, good enough for a long ride on the trainer, which I had ignored a bit, in the morning and then the ride to the airport in the afternoon.

A few hours ago, before going for dinner, I went for a walk to the mall.  It was opposite the mall that we ate when I first visited Korat almost exactly two years ago.  The walk was along a relatively quiet street, but a story on road fatalities I had just read in the Economist kept me on my toes.  Thailand sits unenviably high in the international rankings.  Lucky for me, the only close call was with a stray dog that darted from the bushes.

The restaurant where we had dined two years ago was closed.  Back then, it had drawn us in with its lights and garden.  The eyes of the proprietors filled with shock when we entered.  This was not a place for foreigners.  The menu was all in Thai and no one spoke any English.  Ordering beers was easy, and for food, we went by the pictures and didn’t regret it.  There were smiles when we left.

The walk wasn’t as wholesome as I had hoped.  Getting out is good, but the poor air quality does nothing for my nose.  The inevitable picture of Thailand as a place of white sandy beaches and blue skies doesn’t apply in the interior.  But this is where the synchrotron sits.  Tomorrow I will visit to reconnect, and then it’s back to Bangkok for a crystallography course.  If all goes according to plan, I’ll be back in Zurich just three hours before my next chemotherapy session is scheduled.

Time warp

Today was the first day I rode my trainer in a week.  I’m shocked to write this.  What happened to my sense of purpose?  What happened to helping my immune system beat the cancer?

It’s not exactly that I’ve slacked.  I’ve ridden my bicycle to work every day since the most recent chemo session, and I’ve gone on long walks over the weekend.  But does this matter?  Does this have a positive effect on the immune system?  Is it any better than watching the Swiss cyclocross championship (in conditions so good and uncyclocrossy that I half-regretted not entering the citizens race on my half-suitable Cube) on the Baldegg on Sunday?

A friend from highschool visited us over the weekend, which explains all the walks and animation.  Both the boy and the girl took a quick liking to him, the boy especially.  He likes male company, something he unfortunately doesn’t get at childcare where all the teachers are female.  When I picked him up tonight, the first thing he asked about was my friend, who had departed for home in the morning.

The visit also explains why I didn’t ride the trainer.  It’s not the best way of spending an evening together.  So instead of getting my circulation going and my legs in shape, I lounged on the sofa, watching Dawn Wall yet another time.  A great climbing movie, the best I’ve seen, but it can’t substitute for my own activity.

My friend arrived on Thursday evening.  My previous trainer ride dates to Monday.  It is totally unclear to me what happened on Wednesday.  I should have been on the bike.  Why did I not work out?  My mom had just left, and I was without obligations.  What did I do on Wednesday night that might excuse my inactivity?  And shouldn’t a blog be a record of such things?  If I didn’t ride, I should have had all the time to write.

Turns out there isn’t much to write about.  The sixth chemo session went well, like the ones before, without problems.  My white blood cell and platelet counts were on the low side before the session, but this didn’t worry the oncologist too much.  She had seen it before.  These drops are side effects of the therapy, and the body can’t fully recover in the two weeks it has.  For now this is ok, but it’s conceivable that the recovery periods have to be extended if the counts drop too low.

When the pump was removed after two days, I observed something I had seen after the previous session.  I became almost painfully exhausted.  I went to bed early, and wasn’t up to much the next day, forcing myself to run through a shopping center to buy new beds for the children when I would have much rather lain in my own, unconscious.  Add to this a somewhat protracted cold that I brought back from Singapore and nursed over the past two weeks, and you can imagine how I felt.

Today, and this fills me with great satisfaction and a sense of “I told you so”, the cold seems to be gone, the tiredness is definitely gone, and I’m back.  I applaud the ride on the trainer (nothing better than driving out a cold with well-timed exercise) and the long hot shower afterwards.  My nose, which had been running (bloodily) all day, is dry and happy, though probably still bloody because of the low platelet count.

A few points to take home from this rambling post:

• Chemotherapy is bound to get worse before it is over.  Six more session is a lot.
• Whining is for posers and, as Stevo said in Salt Lake City Punk, "only posers die".
• Exercise is good.  Even if no one agrees, I heartily recommend it even for the sick.
• Two weeks is quite long.  One’s body can change a lot during that time.
• Two weeks is quite short when you're full of toxins and trying to overcome their effects.
• I’m doing well, and if I’m not, I’m fighting my way back.

Halfway through

My cycling metaphor, which has not seen much use since I introduced it when I started this blog, is now breaking down completely.  There is no meaning to being halfway there in a cycling race.  The mountains matter much more than the distance.  But I am halfway through my chemotherapy.  I’m scheduled to undergo twelve sessions.  Today was the sixth.

I realize that I go to each session with more apprehension.  It’s not that there’s anything bad about them.  The blood tests before (platelet and neutrophil counts dropping, though still enough of either) require only a tiny prick in the finger.  The results are ready, Theranos-style but actually working, in less than two minutes.  I lift myself up one floor, hand the printout to the receptionist and wait for my consultation with the oncologist (anything wrong, no, blood pressure, temperature, weight, sounds from the heart, lung and gut, and over) and then for the session itself.

A nurse comes to pick me up and shows me my bed.  Her first question:  “Can I get you anything, water, coffee, tea?”  I take water and my pills, four of them whose purpose, which I’ve since forgotten, was explained to me before the first session.  One of the pills is against nausea.  Then the nurse jabs a needle into the port in my chest and hooks me up for the therapy.  This jabbing is slightly painful, but more in anticipation than in reality.  Once the needle is in, I don't even feel it.

The nurse connects various tubes, takes more blood if necessary (not this time), and hooks up a bag of glucose solution to wash the system before the first two drugs are given in parallel.  I usually have to wait a bit for the drugs, which are prepared al gusto and on site.  They drip into me within two hours.  This is the only time I can really do anything with any sort of focus.  I usually write work emails.

After the first two drugs, the system is washed to get everything into saline.  Then I’m hooked up to avastin, an antibody that the nurses treat with considerable respect.  The first time I got it, it took two hours, slow enough for the nurses to save me from possible allergic reactions.  I felt nothing.  During the next session, the infusion speed was doubled, and again during the next.  Now it takes only half an hour.  Every time I’m connected to a blood pressure meter to verify that I tolerate the antibody.  Then more washing, injection (through the port – no pain) of the last drug, and connection to the balloon pump that feeds me more of the same drug over the next 48 hours.

There’s really nothing painful or even uncomfortable with the therapy itself, and the side effects are minimal.  And yet, I go there with a certain degree of trepidation.  It’s been going on for too long.  Every new session is designed to prolong my life and keep me as healthy as possible.  It probably does that, but I don’t know.  What I do know is that I have cancer, and every session reminds me of that.  At home, I can forget.  I live a normal life.  I work, play, love.  Being in the hospital reminds me that all of this isn’t true, and that I’m sick.  I don’t like this at all.

This is also why I’m relieved when the nurse removes the pump two days later.  The pump – a common theme – causes neither pain nor discomfort.  As I sleep on my back without moving much, I don’t mind a tube from my chest to a plastic bottle next to my pillow.  I can ride my trainer with the pump and take a very careful shower afterwards.  I ride my bike to work.  The pump is never in the way.  But it’s there, and it reminds me that I’m sick.  Have I mentioned that I don’t like this at all?

This is why I’m happy that I’ve now reached the halfway point of the therapy.  Six more sessions once the pump is removed on Friday.  Six sessions I can do in good spirits.  I’ve shown that already.  I’ll do it again.  After that, who knows.  I don’t, but I firmly believe that I will be healthy and survive.  I'm nowhere near halfway through my life.

Borrowed time

I welcomed the new year with music, champagne and my mom, video-chatting with the rest of my family in Argentina and then my sister’s family in Germany.  It was a brief uplift from a rather somber week.  Now I'm back in a flat that is mostly empty and eerily quiet, despite the CDs I keep feeding to the stereo.  I miss the children’s laughter, yelling and running.  I miss playing Duplos with them (though when I do, in normal times, after work, I’m often tired and not always keen on it).  I miss drawing with them, writing, making a mess.  The flat feels like an hollow cave, or a grave.

Outside, it’s also quiet, cold and cloudy.  It is as if the world stood still, if it hadn’t yet made the jump into what most call the new decade (which, technically, starts in 2021 only).  There is no motion in the air, no commotion on the ground.  People are in their homes taking it easy.  The tall trees that are visible through our living-room windows are stripped of all of their life-giving leaves.  Their tiny branches are crisp black lines against the dull grey background.  They look like finely executed ink drawings, inanimate and inert.

I’ve been inside for most of the past week, venturing out only occasionally when my mom’s insistence to go for a walk became too strong.  We had a sunny but cold day of climbing along the ridge of the Lägere crest, an exposed hike not for the timid that you wouldn’t expect a fifteen-minute walk from a busy town center.  You would also not necessarily expect a seventy-year-old on it, but my mom did just fine.  We took another hike on the other side of town, crossing a hill as the motorway tunneled through it.  There was no sun on that walk and hardly anything to recommend it.

Thus I’ve preferred to stay inside, though it’s not doing me any good.  As I slow down and stop moving, energy is sapping from me as if it weren't needed anymore.  Instead of recovering from a tough year, I slump into the next as if I were unwilling to carry my own weight.  I don’t do hygge.  I need activity but find it only on my exercise bicycle.  Picking up work again in a few days will be an uphill struggle.  The children will be back by then.  They’ll help me get into gear.

The new year will bring another seven chemotherapy sessions, the first one only a week away.  By Easter, this irritating but vital routine will end.  This is all I know so far.  This is all anyone knows.  After chemo, I will live on borrowed time, pretending to be healed while fearing recurrence.  There will be periodic checkups, tests and consultations, but there will only ever be two outcomes, doubtful health and certain illness.

I shouldn’t be looking forward to this, and yet I do.  Every day is a gift.  Every day is life.  Every day I can do something, learn something, teach the children something, have fun, be myself, enjoy life.  Coming out of chemo with the cancer in remission would be wonderful, even if recurrence looms, unstoppable.  There will be more cloudy days, there might be dark days, but the bright days will outshine them and outlast them.  Survival starts in the mind.  I’m ready for it.

Happy New Year!