Days of Christmas

Christmas was dark this year.  There are almost no markets.  Restaurants and cafés are closed.  Some ski resorts are open and promise fun and sun, but I don’t want to take the children or indeed myself up there without a lodge to warm up in after a few hours in the snow.  The valley is covered in low-hanging clouds.  The temperature doesn’t stray far outside +1 and -1 degrees Celsius.  Sometimes it rains.  When it does, the clouds are darker and it feels as if night were about to fall at two in the afternoon.

I have quickly and completely adapted to the conditions.  Since Saturday, when I cycled to the bakery for breakfast rolls, I haven’t left the house.  I haven’t even moved much.  I spent most of the last few days on the sofa.  If things got bad, I retired to bed.  Bright moments were when I built the new marble track with the children and then taught the girl to build it herself.  She did a great job turning instructional images into a construction that was exactly right, and kept her patience throughout.  I also played trains with the boy.  I didn’t write a thing and didn’t do anything positive.

It wasn’t just the gloomy weather and the Covid-enforced darkness that made me this way.  I felt so poorly that I just couldn’t do more.  I was trying to get better by giving my body near complete rest.  It’s not something my body is used to.  I don’t know if it’s something my body knows how to handle.

The first days, right around Christmas, were the worst.  I felt like shit.  There was no need to identify specific symptoms.  I was without energy, exhausted and sometimes dead tired.  I suffered no pain but constant physical discomfort that I couldn’t pin down.  During the day, I read books, listened to music and stared into space.  Sometimes I even skipped brushing the children’s teeth, my one remaining chore in the house.  Flucha does everything else, cleaning, cooking, bathing the children, shopping, without a single complaint.  It’s amazing.

Often, when I tried speaking, I ended up coughing.  I didn’t eat much and didn’t drink any alcohol.  Christmas dinner was almost wasted on me, though it was a good one.  Every night, I watched a couple of episodes of Saul and then collapsed into bed.  I slept without getting rest, waking up a dozen times because the liquid behind my right lung forced me to sleep in one very specific way.  My body responded to this restriction with tensions and muscular pain.

A few days later, after I had started with the new chemo program, things started to get slightly better, but so slightly that there was a deterioration for almost every improvement.  My lung seemed to have a bit more capacity.  It’s still far from normal but might indicate a reduction in the fluid level.  I’d be so indescribably happy if this were the case.  I haven’t taken a deep breath in a long time.  My energy has increased a bit and a fair share of my appetite has returned.  At the same time, I can now describe specific complaints that were earlier lost in the general misery.

Something is wrong with my digestion.  I feel occasional sharp pain (that I don’t want to overinterpret) paired with rumbling guts.  My lung is still not a happy place.  In addition to the liquid-filled pleural sac, pain is emanating from my left lung.  Most of the time, I’m miserably cold.  I’m shivering under two thick sweaters while the boy runs around the flat half naked.  At night, I sweat.  On the upside, I sleep much better.

Tomorrow, I’ll be seeing my doctor to evaluate the first few days of chemotherapy and the state of my health.  I’m curious about what he will say.  Will he find that the lung has improved?  Will he say that all I’m experiencing is ultimately related to this?  We will see.  There’s obviously no point discussing side effects.  If there were any, they’d get lost under everything else that ails me at the moment.  Is that a good thing?  I think at the very least I can make a strong case for a doubling of the dose.

One in a million

Over the past year and a bit, as I’ve been struggling with cancer, undergoing first a fairly substantial resective surgery and then three chemotherapy programs, I’ve always told anyone who asked that I was doing fine.  This was generally true.  I felt good.  The disease seemed far away.  There were only a few episodes when I was doing poorly.  They passed quickly.  I don’t see myself like this anymore.

Over the last week or so, I haven’t been doing too well.  It started after the intervention to implant the stent into my bile duct, but probably had nothing to do with it.  A few days later, water started accumulating in my lung at a frightening rate.  Twice it was drained, and twice it didn’t make much of a difference.  The liquid must have returned quickly.

With lungs at half capacity, I get out of breath more easily, and my heart rate goes up quickly.  I feel no persistent pain but discomfort emanating from all parts of my body.  Sometimes it even seems muscular.  Every now and then, sharp pain shoots through my abdomen.  How can this be?  I am not happy with how things have recently progressed.

Yesterday morning, I filled my prescription of the new chemotherapy agent, trading 3500 Fr for 85 little pills that should last three weeks if taken at full dose.  The doctor recommended taking it easy at the beginning and watching the side effects.  The way I feel right now, side effects are the least of my worries.  When I see my doctor again on Wednesday, I hope we can crank up the dosage.  The cancer needs to feel the heat.

Last week, when I was wondering how my physical state had deteriorated all of a sudden, I was as idiotic as these TV epidemiologists in Switzerland that declared themselves complete shocked by the sudden start of the second wave of corona infections in October.  There was nothing mysterious about the sudden rise of cases, and there’s nothing mysterious about my physical deterioration.  Both a pandemic and cancer are developments based on exponential growth.  If nothing is done to contain them, they will explode.  I hope Switzerland has now learned this.  I certainly have.

Even as little as a few months ago, I was myself.  I know I was fighting cancer, but I couldn’t really feel it.  This is a great place to be.  Now, during the four week break since the end of the last therapy, the cancer must have taken advantage of a body free of drugs and proliferated, spread and done damage.  I can feel the seeds of destruction inside me.  I feel myself falling apart from the inside.

The new drugs are third-line therapeutics.  They are prescribed when a bunch of other, statistically better therapies have failed or nor shown enough of an effect.  One could take this as a rather depressing development.  Luckily, statistics mean nothing at all for the treatment of an individual.  Whether a drug works in one out of a hundred cases or helps one in a million is important for clinical trials, but makes no difference at all when treating an individual.  Statistics break down when you’re looking at a sample of one.  The thing that matters is that you’re the one where the drug works, not how many it doesn’t work for.

Over the course of this week, my doctor kept advancing the potential start of the new therapy.  First, he was going to give me the prescription next Wednesday.  Then he recommended I start after the Christmas weekend.  The last I heard was Sunday.  I took the first pills on Friday.  There’s no point waiting.  I believe I’m one in a million and the drug will work.  There is no other approach.

More liquid

Today I was back in the hospital.  It’s getting a bit much but it was necessary.  I wanted to talk to my doctor about the liquid in my pleural sac, and he wanted to see whether there was more he could drain to make the Christmas weekend easier on me.

I came with two questions.  Why did this liquid appear in such a large quantity all of a sudden, and how do I make sure this stops?  I didn’t get satisfying answers to these questions.  My doctor said that it’s always a bit of a guess why certain things happen at certain times but he was quite confident that the tumor was at the bottom of it.Maybe it’s got more aggressive, he speculated.  Not something I wanted to hear.

Consequently, there isn’t much to do to stop the accumulation of liquid other than push back against the tumor.  I need an effective therapy.  My doctor proposed to start with the new therapy, a bunch of regorafenib tablets every morning for three weeks, with a one week break after that, this weekend already.  That’s quite a chance of pace from the original schedule of restarting therapy in the new year.  As a side note, the sudden accumulation of liquid between therapies probably shows that the earlier therapies were at least partially effective.  The operation to insert the stent in the bile duct was a red herring.  It had nothing to do with it.

By ultrasound, the doctor saw that the liquid behind the lung was high again.  I could have told him that.  My lung feels only halfway there.  I get out of breath at the least exercise, and I cannot move with energy.  The doctor decided to drain my lung again.  This was curious.  So far, I’ve only seen my oncologist behind his desk and during quick examinations.  We’ve discussed my disease, my therapy options and possible alternatives.  He’s been a consulting physician.  Now he would morph into a treating physician.  Fifteen minutes later it happened.

He did everything the same as the doctor two days earlier.  I made sure of that, asking about disinfection and generally being the armchair physician that every real doctor hates.  I have to say I was a bit unsure about this desk jockey operating on me even though it was a simple procedure.  But he did a good job.  I felt no pain.  He dained a liter and a half.  All the while, I could clearly tell that there was something stuck in my back – not a very nice feeling.

When he was done, he asked me to rest a bit, just like the doctor two days earlier had done.  There seem to be procedures in place for such things.  This time I had to wait for half an hour only.  Then I went to get a chest X-ray to make sure the doctor hadn’t punctured my lung.  All looked good.  I picked up my prescription and was off for Christmas, stopping at the grocery store for one last present for Flucha.  Merry Christmas!

Staying negative

After I had the nasal swab and was given a bed in my own little room in the emergency department, things progressed only slowly.  My emergency was not a life-threatening one.  Various subsets of a crew of four women, a nurse, a senior doctor, the main doctor and a trainee doctor, kept coming into the room, doing this and that to me while I was anxiously awaiting the results of the Covid test.

The nurse tried to test me blood for oxygenation.  I don’t know if she was successful.  Drawing venous blood is easy and relatively painless.  Drawing arterial blood is a pain.  I don’t do well with needles in the body in the first place.  When the nurse kept pushing and digging to find the artery, I threw a bit of a hissy fit.  It was the most painfully uncomfortable experience I’ve had in a long time.

Then they did an ultrasound.  This gave an explanation to an observation the doctor had made during the initial examination.  My right lung sounded dull.  There was not much air flowing.  This explained the shortness of my breath and was in turn was explained by what the ultrasound revealed, a lung surrounded by liquid.

There’s always some liquid in the pleural sac, which covers the lung.  This smoothens the inflation and deflation of the lung during breathing.  When there’s too much water, it keeps the lung from inflating and pumping enough air.  The pleural sac of my right lung was filled to the brim with liquid.  This was confirmed less than an hour later by the most efficient CT I have taken so far, but the next step was already clear before that.

“I need to do a thoracentesis”, the doctor said, or would have said, had she spoken English.  Maybe she would have used the term needle decompression.  I would have been none the wiser, since I had never encountered either term before.  In German, she said she’d puncture my thorax, which was about as clear as it needed to be.  She explained that she’d feed a cannula between two of my ribs, just high enough to avoid my liver, and then drain the liquid as much as possible, largely by gravity.  She spoke of 1.5 to 2 liters.  I didn’t want to hear or see any more.  The knowledge that there would be local anesthesia was enough for me.

It didn’t take long for me to be wheeled down to a temporary patient storage area with small but fully equipped units separated from each other by pale yellow nylon curtains.  It’s curious that the meals in the hospital are distributed to the wards by robots, but nurses still push the beds.  Half an hour later, the doctor was back, an ultrasound in tow.  While I was sitting on one side of the bed, she got to work on my back, using the ultrasound to identify the best pair of ribs to push through.  After injection of the anesthetic, I didn’t feel anything.  A good ten minutes later, it was all over.  The doctor showed me a large plastic bag full of amber liquid and declared the procedure a success.  I should breathe much easier now, the doctor said, but not expect miracles.  There was still quite a bit of liquid left.

There was no talk about where all this liquid had come from, why it had filled one pleural sac right now, and what might keep it from coming back.  This is for a consultation with my oncologist, I guess.  I was promised free passage home if I remained under observation for another couple of hours, still in the mysterious patient storage area.

This is when I received the result of my Covid test.  I remain negative.  My powers of deduction are obviously weak.  On the other hand, my betting on corona as the culprit might serve as an illustration of what some call the Holmesian fallacy.  You can rule out options for sure only if you know everything about them, and no one does.  An hour and a half later, after eight hours on the emergency ward, I was on the bus back to town, not fully restored but in good spirits.

Powers of deduction

This past weekend was one of the strangest in a very strange year.  On Friday night, I wrote how I was suffering from shortness of breath, how even riding downhill from work put me out of breath in ways I had not encountered before.  This was nothing.  On Saturday morning, we went to the local DIY store because Flucha needed some parts to build kites, never mind it’s nearly winter and the fall storms have long given way to a near-complete stillness of the air.

I packed the kids into the trailer, hooked it up to my bicycle, and we set off.  The going was painful.  The way to the store is nearly flare.  There’s a tiny incline going up to the bridge and then a minimal gradient up to the store.  I got out of breath as soon as I got on the bike.  This was very different from going up a pass in the Alps.  There, as it gets steeper and the ride longer, you breathe harder and more frequently.  Your lung shovels air by the bucket.  On Saturday, my lung didn’t do much.  On the bridge, I had to stop and rest,  I couldn’t go on.  My lungs didn’t provide enough oxygen for even this little bit of exercise.  I was still not worried at this point.  Things would have to improve eventually.

On Sunday, they didn’t.  I was very tired throughout the day, spending most of the time on the sofa, reading the Economist Christmas double issue I had bought at the mall the day before.  In the afternoon, the sun came out.  We took the children to the playground.  Just watching, it was a bit too cold for me and a bit too passive.  I took off for a walk through town.

On this walk, I had to stop twice because I was too out of breath to continue.  Once was after climbing the stairs from the lower level of the train station to the bus terminal.  They have some fine benches there to rest.  Then, on the last stretch back home with nothing more than an almost imperceptible gradient to slow my progress, I had to stop again.  That’s when the thought of corona entered my mind.

Sherlock Holmes said that, “when you have eliminated all which is impossible, then whatever remains, however improbable, must be the truth”.  It’s unlikely that I have corona.  Besides the acute shortness of breath, I have no symptoms.  I’m not coughing, I have no fever, and an apple tastes like an apple.  I’ve also not been in prolonged close contact with anyone outside my immediate family.  But there’s nothing else that might explain the shortness of breath.  The operation last week can’t have caused it.  The liquid outside the lung can’t possibly have trebled in volume in a few days with nothing to trigger it and gone from not noticeable to making my physical activity impossible.  I must have Covid-19.

On Monday morning, I informed my oncologist about this development.  He didn’t take chances.  “Present yourself at the emergency department.  I’ll preregister you.  We’ll need to check out your lung, and we’ll get a CT faster with an emergency.”  In the hospital, I spent the first hour together with a number of others, getting ready to get another Covid test.

The pandemic is very far from under control in Switzerland, but at least my hospital gives the impression of situation normal.  Nurses aren’t running around, doctors aren’t frantic, people aren’t shouting.  Everything is almost eerily calm.  There is no indication of stress, though for everyone employed at the hospital, stress must be a daily company that’s only getting worse.  These people, whether you see them or not, are true heroes.

A doctor came and took a nasal swab for the corona test.  This time I knew what to expect and was rather relaxed.  Now on a bed and not in an uncomfortable chair anymore, I’m even more relaxed.  An answer to the mystery of my lost breathing is still pending.

What's important

It’s exactly one week since my little operation and time to take stock.  The liver values have come down.  They’re all normal, except for bilirubin, which is still a bit elevated.  This will slowly fade over the next few weeks.  The pancreas values are unexceptional.  All went as planned.  I was even released on Monday afternoon as my oncologist had said.

I don’t feel fully restored yet, even though the operation was endoscopic without a single cut.  There’s something a little odd about my digestion, though I have a hard time pointing a finger at it.  For a few days, I had a slight chest pain.  This felt like something outside my lungs, something muscular.  It’s gone now.  What disturbs me a lot is my breathing.  I have a hard time drawing in enough air.  Riding my bicycle to work I have to go slowly, and even so I feel frighteningly short of air.  This feeling returns when I ride back home – downhill.

In the worst case, metastases in the lung could be the cause of this.  Alternatively, it could be the pleural effusion I’ve had for a while, water in the space between the lung and the ribs.  The more water, the less space for air to fill the lung.  Both explanations are intuitive, but I don’t find them convincing.  The degradation of my breathing happened essentially overnight, right at the time I had the operation.  It must have something to do with it.  I’ll work with this hypothesis for the time being and hope things will have returned to normal when I see my doctor again shortly before New Year’s.

Is it all good then?  The operation was a success but it fixed only problems caused by the cancer, not the problem of cancer itself.  To see how things were moving in this infinitely more important race, I had a CT taken two weeks ago.  You probably haven’t forgotten about this.  On Wednesday, I discussed the results with my oncologist.

To make things short, it was as expected, though far from what I had hoped.  The clump in my liver had continued to grow, as had the size of the pleural effusion, which can be caused by metastatic cancers in the lung tissue.  There was no good news.  The doctor filed the most recent therapy with EGFR antibodies under failure just like the previous ones.  I was mostly disappointed that the fasting hadn’t made a difference.  It looked so convincing on paper.

Here it is important to take a step back and look at the facts with disinterested eyes.  The cancer has not been stopped.  That’s a fact.  As this is the goal of every therapy during the early stages of treatment, every therapy so far has failed.  But this is a far cry from saying that the therapy hasn’t worked.  Maybe it has slowed the cancer.  Maybe the cancer would have raged more violently without treatment.  This is almost certainly true, though there’s no way of telling.

In any case, a new therapy is needed to see if a breakthrough can be achieved after all.  My oncologist wants to move away from 5-fluorouracil-based therapies.  He suggested something pill-based, to be taken daily and at as high a dose as my body will tolerate.  I will have to spend less time at the hospital, get fewer pins stuck into my chest and won’t have to fast, but I doubt this will make it easier.  How am I going to deal with the side effects if I need to take the drugs every day?  I’m not exactly looking forward to next year.

One more day

It’s getting a bit silly.  This morning, I spoke with the doctor who was already present before the procedure and thus more familiar with my case than the weekend covers.  He was all positive.  The liver values were dropping.  Bilirubin had gone down dramatically.  The pancreas markers were normalizing.  It was all looking good.  “You could almost go home today”, he concluded.  I didn’t like the almost much.

The doctor asked about my poo.  After a few weeks of being somewhere between mint and fluorescent green, it had been rather dark the day before, almost black.  The doctor didn’t like this too much.  It probably confirmed him in the use of the word almost.  But he wasn’t too concerned either.

A dark color is always a strong indicator of blood, especially after an operation where internal organs might have been damaged accidentally.  Something in the numbers the doctor had in front of him reassured him that there wasn’t a big problem.  “Please show your poo to the nurses the next time you go”, he said.  “Tomorrow you can leave.”

I’m living day by day.  Initially I checked into the hospital for two days.  I came with a backpacked filled accordingly, clothes, reading material.  Now only my computer continues to offer distraction.  Work emails have slowed down shortly before Christmas, but they still arrive in sufficient numbers to keep me busy.  They are also the only bit of normal life that penetrates the hospital walls.

I expected to check out on Saturday.  The pancreas values were too high.  I was hoping for Sunday, but with the main doctors absent, no one wanted to make this decision.  I was confident about Monday, but there was still a scrap of doubt about my state and a consultation promised with my oncologist for the afternoon.  I am now sure I will leave tomorrow.  I’d lose my mind if I had to stay another day.  There’s nothing to do here.

There’s a small room at one end of the hallway with a table and a few chairs.  This is my retreat.  I’ve been there only twice, but it’s reassuring to know it’s there.  It’s the only way to escape the bed, and lounging in bed all day is nothing to restore my energy or spirits.  In the break room, I can sit like a normal person and read or write.  I would even be in video conferences without having to hide my pillow with a virtual background.

A few minutes ago, I had just started lunch, my oncologist stopped by.  He seemed content.  Everything had worked out as planned.  He conveniently ignored the extra days in the hospital but celebrated the normalizing liver values.  Implanting the stent had been the right decision.  The surgeon had seen a lymph node exerting pressure on the bile duct.  My recovery was going well.  There was nothing to worry about.  “Does this mean I can go home tomorrow?”, I asked.  “Why only tomorrow?”, was his reply, and off he went to organize my immediate release.  I hope there won’t be any snafus now so late in the game.

More waiting

With the light blocked by dark clouds everywhere and too many hours spent locked up in the hospital, I thought it was close to dinnertime when the doctor came to see me yesterday.  It was shortly after two.  The doctor wanted to discuss my current state and, as I hoped, release me to go home.  I felt ok.  My digestion wasn’t 100% stable, but it hadn’t been all week.  I felt hints of pain from various parts of my lower abdomen, nothing I could place and nothing that worried me.  The doctor didn’t say anything about the liver.  I assumed everything was within expectations.

I have learned that good news doesn’t deserve explicit mention.  Ambiguity even less so.  The doctor focused on something concrete, worrisome.  Some pancreas markers had apparently shown up in my blood at high levels.  This meant nothing to me, but the doctor was concerned enough not to let me go home.  “I don’t want you to wake up with pain in the middle of the night and have to come back here”, she said.  I would have to stay for at least one more night.  “If the markers are down tomorrow”, she continued, “you can go home”.  There was no mention of treatments in case of a deterioration.

Flucha did some medical searching at home.  This is what builds expertise, apparently.  It’s not uncommon for the pancreas to take a bit of a hit after the procedure I had undergone.  The organ usually sorts itself out with time.  One day might not be enough to see an effect.  My chances of sitting out the weekend in the hospital were increasing.  Before she left, the doctor had one more thing to say: “I’ll place you on another fast to give pancreas and liver time to recover.

Fasting is not something I enjoy, but this time I didn’t mind at all.  Lunch was still lying heavily in my stomach.  I didn’t have the feeling that digestion was progressing much.  I wouldn’t have wanted anything for dinner.  At night, I went in and out of sleep, always wondering what’s going on in my guts.  It takes more to digest food than a stomach and intestines.  There’s a reason for all the other organs lingering in the vicinity.

This morning, I still had a log in my guts, but now this feeling could equally be explained by hunger.  It’s curious how being stuffed and being hungry can feel so similar.  Shortly after lunchtime, another doctor stopped by to check up on me.  He didn’t have much to say.  Some blood values were good, others less so.  The only prospect he put in the room was food.  He’d need to run this by a more experienced doctor, he said.  There was no way of my being released today.

When I was in the hospital for the hemicolectomy last September, my last two days also fell on a weekend.  It was a different feeling.  I enjoyed the calm days and my vastly improved physical state.  I took walks outside.  Now I’m getting annoyed.  What am I still doing here?  All they do is check my blood, my blood pressure and give me blue potassium pills a few times a day.  I don’t feel like a patient.

Time passes

In hospital, time is relative.  Yesterday, I spent all morning and half of the afternoon waiting for the time of the surgery being announced and then for surgery itself.  At the beginning, there was no time.  The operation would begin when a slot had been found and everyone was ready, the nurse said.  It was a busy day.  I had stopped eating and drinking the night before and was told to keep up the fasting until the operation.

I lay in bed thinking this could be a good time to read, catch up on emails and write about what’s been going on, even though it hasn’t been much.  Instead, I remained largely lifeless, floating in and out of sleep, woken on occasion by nurses who told me that there was still no news.  I might have still been a bit exhausted from the first three days of the week where the workshop drained my energy but I kept working into the night.

Around lunchtime, which comes early here in the hospital, I got the first firm number.  The operation would start at one.  One o’clock came and went, and I was still dozing in bed in my room.  It became two and then three.  The nurse came with a new number.  The operation would be at a quarter past four.  A few minutes later, the process suddenly started.

A nurse wheeled my bed down to the first floor into a small room stuffed with equipment.  The centerpiece was a cylindrical unit with an abundance of cables and tubes emanating from it.  This must have been the endoscopy module.  The anesthetist took over.  She injected pain killers and then the sedative that would put me to sleep.  It was 3:45 when I fell asleep.

I have no memory of waking up.  I wanted to know how long the operation had taken, but there was no way of telling.  Waking up from anesthesia is like diffusing back to life.  Parts of me woke up and checked in, only to be drawn back to their drug-induced slumber.  This coming and going was not enough for me to make any sense of.  It was only around six or seven that I fell firmly back on earth.

By that time, the surgeon might have come by to inquire about my well-being and ask a few questions.  I have no memory of what we spoke about exactly, or whether he was the surgeon.  I was still zonked out. The first thing I remember was a nurse telling me I could eat at nine, which I perceived as not being allowed to eat before nine.  A grim prospect with no food or drink (outside a slow drip of saline) for 20 hours now.

Time before nine stretched endlessly.    I kept looking up at the clock in the room in generous intervals, only to be surprised that the hands had hardly moved.  Then it was nine, then a quarter past.  There was no food.  Then a nurse appeared who told me that my dinner had disappeared.  The tray distribution robot must have taken it back to the kitchen.  She found a few edibles on the station that combined into a simple breakfast and served it with instant soup.  It wasn’t enough to make up for lost meals but good after a surgical intervention, however simple.  I fell asleep shortly after eating.

This morning, I was waiting for a doctor to discuss the terms of my dismissal from hospital.  It is lunchtime now.  My meal has arrived, but I haven’t seen a doctor yet.  Time moves more slowly on weekends with fewer staff on duty.  A nurse took my blood this morning.  Later, I left some pee in a tub that was so dark it frightened the nurse.  Bilirubin, I reassured her.  I’ve done my part.  Why am I still here?

Despite the frustrated wait, the hours passed more quickly than yesterday.  I read fascinatingly interwoven stories about conservation and restoration in Granta’s current “Second Nature” issue, wrote this post, and talked to Flucha and the kids on the phone.  Better than all this would be going home.  I hope there will be some developments this afternoon.

Waiting hours

Two nights away from the family for the first time in eleven months does unfortunately not mean business travel has started again.  A night in the hospital is somewhere between a night in a hotel and a night on a plane.  The bed is comfortable enough but sleep is mediocre.  Three old men in various states of decrepitude coughed, moaned and snored all night.  There was no breakfast waiting for me when I woke up.  Instead, it was a nurse by my bed.

The intervention would be today, she said, but no one could yet say when.  I was asked to change into one of these hospital gowns that leave one’s  backside dangerously exposed and hold out for further developments.  No problem, I had nothing urgent to do anyway.  For me, days in the hospital are like days on the plane, restful and relaxing.

At home, things were going their expected ways.  When Flucha called last night, the children told me with glee in their eyes that they had been watching peliculas.  That they use the Spanish work even when they speak to me in German tells you where this habit comes from.  It’s ok for me that the rules are relaxed a bit when I’m not around, as long as the children don’t start seeing me as a kill-joy.  I want to limit their screen time, but I don’t want them to grow up as cavemen.

One of the first things I did in the hospital upon checking into my room was a covid test.  I had read too many stories to be relaxed about this.  I knew I’d get a plastic stick rammed up my nose until it almost reaches the brain.  The doctor uses this to remove mucus from the upper throat to test for virus RNA by amplification with polymerase chain reaction.

I was extremely apprehensive, expecting excruciating pain.  It didn’t help when the doctor said the procedure would be rather uncomfortable.  Had I listened to her carefully, I would have been more relaxed.  The procedure was indeed uncomfortable.  Sticks don’t belong up noses, I keep telling my children.  But it wasn’t painful at all.  A few hours later, I knew the result.  I am negative.  This does unfortunately not excuse me from having to wear a mask all day.

There is still no word on the intervention.  Nurses come and go, ignoring me.  Catering brings breakfast for everyone but me.  It is 8 o’clock by now.  Outside, everything is the pale grey of a foggy day.  The Alps are nowhere to be seen.  I remain in bed, waiting for what might happen.

Signs of lightness

Over the last few days, I’ve been watching my pee carefully.  In keeping with recent trends, I would have expected it to become lighter in color and look normal again.  This is not what happened.  If anything, it’s been getting darker.  My skin also changed back to the healthy look of the recently tanned, which is apparently not healthy at all.  The whites of my eyes are quite yellow.  It’s quite obvious that the bilirubin values have gone up again and likely that the other liver markers have followed suit.

The first three days of the week, I attended a workshop on collaborations, teamwork and negotiation.  Going in it, I was rather skeptical.  The language around it, starting with the title, was just a bit too pompous for my taste.  The workshop turned out much better than I had expected, with a clear message, simple techniques to not only to improve one’s value to teams but also one’s enjoyment of teamwork, and deep insights into behavior and people’s interactions with others.

The downside to all this was that the course was intense.  It took all day, each day.  Staring at a screen with considerable focus for three days in a row was exhausting.  At night, I tried to catch up on the most important ones of the work emails I had ignored all day long.  There was also homework to do.  I didn’t think much about bilirubin, but on the third day, I took a coffee break as an opportunity to call the hospital about it.

A few hours later, my doctor called me back.  He didn’t sound concerned but told me that I would get an appointment for a little operation to implant a stent into the bile duct.  This will secure free passage for the bile and prevent bilirubin and Co. from showing up in blood and urine.  A few more hours later, I got another call.  Please report to the hospital tomorrow at 10, the woman said.  Your surgery will be on Friday.  You should be back home by Saturday.

It is reassuring that an operation that doesn’t seem particularly urgent can be scheduled at such short notice.  Switzerland is in a self-inflicted mess of extremely high corona numbers without even the slightest idea of how to get out of it.  But it seems the country can still handle the situation.  No one talks about the excess deaths, mostly old people with preexisting conditions.  They have no voice.

This morning, I went up to the hospital.  I was placed in a room with a view, up on the 11^th floor.  The nurse insisted that the Alps are visible in the early mornings, before low clouds and fog turn everything into a white-out.  The ground is covered in snow.  I checked in with joy.  The liver values have been a nuisance for too long.  Bilirubin causes no pain but is an irritant to certain parts of my body.  Let’s fix this.

Placing a stent inside a vessel that is maybe a few millimeters across sounds like tricky business, even when you have direct access through a gaping hole in the belly (at least to someone unskilled and untrained like me).  But it must be routine.  To increase the challenge a little, the surgeon decided to do away with the cut.  In the spirit of minimal invasiveness, he will use existing openings and passages only.

Put it simply, the surgery will be conducted endoscopically.  The doctor will insert a miniature video camera, a light and a remote-controlled robotic arm into my mouth and lower it through esophagus and stomach into the small intestine, down to the point where it meets the bile duct.  The equipment then has to take a tight turn and investigate the bile duct for the best place to put the stent.  I’m glad I’m the patient and not the surgeon.

Without any cuts to heal, I could probably leave the hospital a few hours after the intervention.  I’m allowed to eat two hours after it.  The doctors are keeping me for a night to see whether anything didn’t go completely according to plan, but on Saturday I should be home for lunch.  After that, I’ll keep watching my pee for signs of lightness and thus success of the operation.

Easy procedure

Half the time, I seem to get an oral contrast agent before a CT.  Half the time I don’t.  At least that’s how I remember it, dimly.  This time, I had to take it.  The contrast agent is 600 ml of a clear, largely tasteless liquid that I’m asked to ingest over the course of half an hour.  I have nothing against the contrast agent, except that it makes the whole procedure take longer.

On Thursday, it took longer than usually anyway.  I had to wait a bit and then, when I had already bared my upper body and clothed it in a hospital gown, wait a bit longer.  An emergency had just come in with higher priority than me.  Fair enough if it’s a question of life and death, but it meant I wouldn’t be in time for tea and christmas cookies with Flucha who was working from home that day.  When I finally arrived home, she had just left to take the girl from kindergarten to her weekly polysport session.

Thursday’s scan had a good side too.  Because of my immune reaction to iodine, the second, intravenously administered contrast agent during the first scan, I had received a heavy dose of the antihistamine Tavegyl during all further scans.  This had preempted further adverse reactions, but Tavergyl is an old drug with strong side effects.  It had always knocked me out for the rest of the day.

For this time, my doctor had given me a prescription for two alternative antiallergics, to be taken orally in the morning of the scan.  These drugs build their action slowly, and much less is needed if they’re given well in advance.  There should be way fewer side effects.  The radiologist was a bit surprised at this unexpected change of protocol.  A bit of a palaver ensued until I got the go ahead from the head radiologist, together with half a dozen stern warnings to shout at the onset of anything strange.

Nothing strange happened.  My body showed no reaction to the iodine.  The scan proceeded smoothly and successfully.  Afterwards, I was detained for another 15 minutes to rule out a delayed reaction.  Then I was free to go - but not yet home.

First I had to have the tubing detached from the port in my chest.  Back at the oncology ward, my doctor took the opportunity to stalk me out for a chat.  The liver enzymes had come down further.  Some were still slightly elevated, but most have returned to a healthy range.  Bilirubin was down as well, though not fully yet.  I was expecting this.  Flucha had kept commenting on my increasingly healthy complexion.

A CT scan doesn’t sound like much.  It’s not exactly an intervention.  The radiation has no acute effect on the body.  Leave the hospital, and everything should be normal.  This is not how it is.  The contrast agents pound the body, and it takes some time to flush them out.  Taking it easy today, I’m still working on this.