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.