Positive aspects

This is going to be a long post.  When I declined an appointment for later during the same week to discuss the results of the CT scan on Tuesday, my hope was that I’d get a call anyway.  I imagined my oncologist who is about to move to another hospital and is in her last week of caring for and about me would want to share any positive news.  It feels good to share good news.  It would also make her training at the hospital a success and let her leave on a high note.

I did get a call on Wednesday afternoon, but the tone of my oncologist’s voice didn’t promise the kind of results I had hoped for and almost expected.  She didn’t sound as excited as I would have been upon getting good news.  The images were ambiguous, she said and suggested I’d come in to discuss them and decide how to proceed.  She gave me an appointment for today.

It was with considerable trepidation that I cycled over to the hospital after lunch today.  I had spent the previous day and a half imagining what the results might be.  I couldn’t envision anything that’d make me happy.  In her office, the doctor sat in front of me with a serious face.  Your tumor has grown, she said.  I suggest we stop chemotherapy and think about alternatives.

I was stunned.  Stopping chemo is not an option for me.  How could it be?  It doesn’t hurt and is the only thing that provides hope.  She had other things in mind.  Next week, we’ll do a PET-CT scan, she said and explained her reasoning.  The scan will provide size estimates better comparable to the numbers obtained during my previous PET-CT in April.  It will also give a reading on the metabolic activity of the tumor.  This is as important as the size.  To focus on the scan, I’ll skip next week’s chemo.  With the PET-CT images, the tumor board will discuss my case and agree on a strategy.  I will talk to a doctor in a week and a half to see how things will continue.

Cycling back from the appointment, I remained in a state of stupefaction.  The situation seemed bleaker than ever.  How can the second chemotherapy program, with extended fasting as a multiplier of effectiveness, not have worked?  How can the cancer have grown despite all I’ve thrown at it?  The logic of fasting is so convincing to me.  How can it not work?  It took a long conversation with Flucha and some back and forth about what might be going on to see potential bright spots on the dark canvas the doctor had drawn.

There is no negative control.  It’s impossible to tell the effect of chemotherapy.  The tumor might have grown much more without it.  Experienced oncologists might have growth expectations of my kind of tumor, but these expectations weren’t shared with me.  For all I know, what’s growing inside me might have grown much faster without therapy.  It’s also entirely possible that there is so much variability in the behaviors of tumors among individuals that a base rate of growth is impossible to give.  Unless someone gives me very clear reasons to the contrary, I want to continue with chemo.

The state of my cancer when I began the second chemo program is unclear.  I started a month and a half after the PET-CT.  A lot might have happened during that time.  The cancers might have grown beyond the size we see now.  Or maybe they grew to their current size back then and were then stopped in their tracks.  There is not enough data to say that chemotherapy wasn’t effective.  Maybe it would take just a few more sessions to get rid of the cancer completely.

There are no new metastases, at least at the magnitude that can be identified in a CT scan.  This is great.  The PET-CT scan in April identified several new metastases.  This is still all I carry around with me.  If this holds up in the PET-CT on Tuesday, it would indeed be fantastic.  Right after the surgery at the beginning of all this, the doctors were most afraid of a recurrence of the peritoneal growth.  This would be extremely difficult to combat, they said.  Up until now, I’ve been lucky with this.

The entire picture is one of relative stasis.  Besides marginal increases in the size of some of the tumors, nothing has changed.  After the PET-CT scan in April showed new metastases in liver and lung, the surgeons were unwilling to act.  One can lose a big chunk of the liver and continue to live happily, but the surgeons didn’t want to make the cut because they were worried about growth elsewhere in the organ.  My state was deemed too dynamic for surgery.  Now the cancer looks stable and ready for the knife again.

These are all points to raise with my new doctor once he has discussed the results of the PET-CT scan at the tumor board.  I have a list of possible continuations for my therapy that I’d like to discuss as well.  My current doctor was alerting me to the great psychological support at the hospital again.  It sounded as if she thought we were out of options.  I don’t see myself there yet.  Plus, I have this blog to release my questions and worries into the world, so they don’t stay with me and weigh me down.

I should be excited about the PET-CT scan on Wednesday, but I’m even more trepidatious than before the CT scan.  The new scan might show decreased metabolic activity in the tumors or even humps of dead cells.  It’s probably more likely that it will show additional metastases elsewhere in my body that are too small to be picked up by a regular CT scan.  This is not a picture I want to carry around with me next week.  And so I’ll keep doing what I do best, forget about my disease and ignore reality.

No worries

The CT scan today is just another step on a long journey.  Nothing special.  Something I've done before.  And yet!  I felt an unfamiliar tension grow inside me as the appointment drew closer.  When the nurse connected a bit of tubing to the port in my chest to facilitate the administration of the contrast agent and the drug that will keep my allergic reaction to it in check, I was stiff as a poker.

The CT scan is an exam like any other, but the results matter.  If the scan is negative, if no growth can be seen, chemotherapy can be considered a success.  It wouldn't mean I have beaten the cancer.  The resolution of the CT is too low to even say whether all malignancies have been killed.  But it would mean that the therapy is working, and that I'm definitely on the right track.  It would give me great confidence to continue with the therapy and certainly also with the fasting.

I would draw a similar conclusion were the scan to show growth where and to the extent it was previously observed.  This would mean the cancer has been halted.  No progression is progress.  I would imagine that pushing it it back would then only be a question of a few little changes   though this is obviously overly simplistic.

Both these outcomes would make me happy.  They would be unambiguously positive.  Over both scenarios looms the frightening third, the possibility that the cancer has continued to grow with little inhibition and now occupies a larger part of my body than before.  The chances of this happening are high.

I'm not pessimistic by nature, but I have to face the facts.  I have undergone a treatment program very similar to the current one.  It wasn't a success.  Then there is the generally bleak outlook for patients of metastatic colon cancer.  I don't want to remember the prognosis the doctor gave me at the very beginning, but I do.  It doesn't fill me with much hope.

There are dozens of little things that I could interpret as bad signs.  Sometimes I feel a stitch in my lung.  Then there is a bit of discomfort in my gut.  I feel a slight pain on the toilet.  All of these symptoms could have innocuous explanations and I tend to ignore them.  Today, as I sit in the radiology department slowly emptying the beaker of contrast agent that will help visualize the details of my intestines, they come back to me, assume undue significance and make me feel apprehensive.  Right now, I would much prefer to continue my therapy without this additional information.  Hope gives me strength.

This is one of the reasons why I declined an appointment later this week to discuss the results of the CT scan.  We'll do it next week when I'm back in the hospital for my next chemo session.  No need to rush anything.  The results are not going to change.  Others might suffer from the uncertainty, lose sleep or get stressed.  I prefer to have another quiet week where I can forget about all this and ignore anything potentially painful.

As a nurse asks me to stretch out on the table that will be rolled into the big off-white donut of the CT scanner, I relax already.  I must be a bit sleep-deprived.  Any time I lie down feels good.  It soothes me.  I'm cool, at rest and ready for the exam, unworried about the results.  The knots in my stomach have disappeared, the tension dissolved.  Later this afternoon I'll hopefully find the time to treat myself to cappuccino and cake in town.  This is the life I like to live.

Insufficient words

I should write much more.  That’s how I see it.  Not necessarily to share more of what occupies my body and mind, but to keep a record of what’s going on.  I’m very good at forgetting things.  The more happens, the more I forget.  Over the last year, a lot has happened, most of it so out of the ordinary that I never dreamed it up even in my wildest nightmares.  Everything was new.  The one hundred posts I’ve published on this blog are essentially the only record, unless you made a note of something I told you on the phone.

More words than I could ever hope to use.

How can this be anything close to complete?  How could a diary ever hope to be complete?  Even if I spent every waking hour writing about everything that occurs, I could never cover it all.  Days are full of things that happen.  These things are interesting in themselves, and I realize I’ve lost a lot of the details already when I go back to what I wrote in the past.  But they’re only a small portion of what would need to be preserved for a complete record.

There’s also the interpretation of things.  What the things that happened mean to me forms my perception of reality.  My fears and hopes derive from this.  They are not based in anything rational.  Everyone constructs their own reality, based on biases and preferences.  It ignores unwelcome facts and gives undue prominence to others.  Then there’s the question of what one does with one’s reality.  Some people get cancer and despair.  Others get up and fight.  Some get lethargic.  Others continue living peacefully, secure in the knowledge that their god will save them.

On Friday, I went to bed at nine and slept without interruption until we all got up for breakfast in the morning.  On Saturday, I did one worse and lay down to sleep at eight.  I had already dozed off a bit earlier while listening to a podcast.  Both nights, I was dead tired.  I wouldn’t have survived the two hours of Netflix that usually entertain us on weekends.

Does this have to do with the chemo?  If I was similarly tired after previous sessions, I don’t remember it clearly.  I can recall occasional tired days but didn’t write down details.  If I wasn’t, why does my reaction to the same therapy change so much?  At the hospital this week, I was more alert than in a long time, as far as I can remember.  I managed to do a few hours of productive work before the drugs knocked me out.  Back home, I felt reasonably fit.  Two days later, tiredness struck.

Today, I let the family go on a playdate in Zurich without me.  I could do with more rest.  My head hurt as if my brain were shriveling behind my forehead, and I was still exhausted, despite sleeping for more than 20 hours over the past two nights.  Is this normal?  Does this mean anything?  Am I getting weaker?  Or is the therapy finally taking a bite?

While the children were playing at Josefwiese, I went to my favorite coffee shop in town, a tiny affair in a old house adjacent to where the city wall used to stand.  They tend to have great cake, but today must be weight watchers’ day.  Instead of a huge explosion of calories, all I can get is a slim chocolate tarte, rich and juicy, but not exactly filling.  I sit on the balcony where the city wall used to be.  If it weren’t for my cap, the sun would hit my face.  It’s pleasantly warm, far from the furnace of previous days.  The sun attempts to burn my forearms, but only half-heartedly.  From the playground further out, where the protective moat used to be, I hear children wailing in despair.  They dropped their favorite toy or fell off the slide.  Screams of “Daddy!” pierce the air.  I’m glad I don’t have to react.  I take a bite of my tarte and start writing down my impressions of the last few days, a doomed undertaking as always.

New life

Before I started working at my current job, I was asked what type of laptop I preferred.  When I arrived at my desk on the sixth day – the first five were spent traveling to Athens, Georgia, in the US, a lovely little MacBook Air waited for me on my desk, fully installed and configured and ready to go.  This was a good start.

Things have gone downhill since then.  I still have the AirBook, but IT is getting increasingly antagonistic about it.  My computer wouldn't be replaced with something comparable.  All new computers are plastic Dells.  I’m one of a handful of hold-outs that still hang on to their ageing AirBooks.  Mine is five-and-a-half years old now.  It’s running just fine and does everything it needs to do, but it’s battery has deteriorated so much that I hardly get through an online meeting without needing to recharge.  The other day, on a video call with Chinese partners, my computer ran out of juice and turned itself off.

It feels a bit as if my poor computer were in the same situation as me, gravely ill with no way out.  At least I have professionals looking after me.  Tomorrow I’ll go to the hospital for the sixth chemo session.  Everything still appears just fine.  I’m getting more and more used to the fasting regime.  Overall I feel more affected by the therapy than the first time around, but I take this as a sign that the therapy is effective.  I’ve been mildly unwell but stable.  The first time around, I had quite a few episodes where I suffered greatly.  A couple of times I had to go check myself into the hospital out of schedule.  This time around, I’ve been able to enjoy every weekend, the last two hiking high up in the Alps with friends, for example.

All this means nothing.  In the end, only a CT will show whether the fasting and the therapy have had an effect.  It’s so bizarre and so hard to believe that the two options are a new life and the end of my life, and that I can do nothing about it.  Halfway through another four days of fasting, I can tell you that I do quite a few things, though whether these things do anything about the cancer, I can’t say.  And so it is that I can’t do anything that is certain to have a positive effect.

I can do something about my little computer.  Apple promises to replace batteries even in old laptops.  I spent some time on their support website but left none the wiser.  While the layout is simple and the icons are clear, what happens when you click them is rather frustrating.  I could find no information on how much a battery replacement would cost nor how to schedule this intervention at the Apple store in Zurich.

Fifteen tiny screws later, the computer was running like new.

Would I want to go to Zurich for this anyway?  I wouldn’t.  Instead, I ordered a new battery at a wonderful little online merchant, received it a day later in a package that also included the two screwdrivers it takes to remove the 15 screws that hold the back cover of the computer and the battery in place.  Swapping the battery took less time than I had earlier spent navigating the Apple support website.  My AirBook is now good for another five years – or until IT decides to let me retire it with an adequate replacement.  The question remains how long I will survive.

Session 2.5

Yesterday I came home with a headache that felt as if someone were playing pinball inside my brain.  Pain was bouncing back and forth within my skull.  I don’t believe in headaches, but this one was real.  I dropped onto my bed for an hour and a bit but then had to provide the childrens’ pre-bed routine.  Flucha does most, but I’m reading books and brushing teeth.  I wasn’t in a good mood, and the children noticed it.  Fasting isn’t pleasant, and when I fast, I’m far from pleasant.  An hour or so later, the pain had subsided and I could finish some work that had accumulated because I arrived in the office fairly late.  The girl is in a summer camp, which doesn’t start too early in the morning, and it had been my turn to take her there.

It is beyond me how some people do even longer fasting cycles.  I've just read a fairly old case study of ten cancer patients that fasted prior to and/or following chemotherapy for between 48-140 hours and 5-56 hours.  One crazy motherfucker fasted for 140 hours before the therapy and for 40 hours afterwards  This is more than a week.  If this is what stands between me and the cancer, the cancer wins.  This is absolutely not compatible with my fortnightly chemo sessions.  How would I ever regain the weight lost during fasting.

Today at the hospital, my doctor told me that she was leaving.  Her training requires rotations in different hospitals.  It’s bad news to lose someone who’s familiar with my case.  The good news is that she suggested a more senior doctor to take over my case.  This chap not only shares my first name but also my passion for fasting.  He’s the guy who said he'd fast himself if he had cancer.  I will be able to discuss potential changes to my fasting regime with him.  The hard-core woman who did 180 hours of fasting fasted for around the first and fourth sessions only and ate in between.  This is an option.

Chemotherapy continues not to do any damage to me.  I will soon find out whether it does damage to the cancer.  My doctor spoke of another PET-CT scan this month already.  She must be curious to find out before she’s leaving whether the fasting has a positive effect.  I’m less curious.  If the results show less cancerous growth, I’d be stoked and enthusiastic to continue what I’ve been doing.  If the results are negative, I’d be devastated.  I don’t know where I’d find the strength to continue with this.

My trepidation when faced with a scenario of a potential positive result and a negative result with the same probability is known as loss aversion.  On my bookshelf, Daniel Kahneman and Rolf Dobelli have written about this.  In people’s minds, potential losses loom larger than gains.  This is of course irrational.  I should thus have no worries about the PET-CT scan where, in the absence of other information, a positive result is just as likely as a negative.  The expectation value is zero.  Bring it on!

Traveling

After exactly six months, I went back to the airport on the day I started writing this post.  I didn’t get very far.  Business travel hasn’t really picked up again, and I didn’t have a flight to catch.  All conferences and workshops I was scheduled to attend since January have been canceled, postponed or moved online.  There doesn’t seem to be any change in the air.  I want to go to Japan, Korea and China this year, but I’m not really hopeful.  I can’t yet say what my first business trip after the start of the pandemic will be.

Last Friday, after having my pump removed at the hospital, I went to the airport solely to pick up a car for our summer vacation in Italy.  After much dithering, we had decided on Venice, or almost.  We had booked a week in a canvas cabin at a campground on one of the peninsulas that form the Venice lagoon and protect the city from the waters.  The campground had spots available less than two weeks before our departure – and, in the midst of summer, turned out to be less than half full.  The ferry to Piazza San Marcos was a five minute’s drive away.

Taken from Openstreetmap.org.

Calling where we stayed a campground is not exactly telling the whole truth.  If you’re thinking tents and communal washing rooms with cold showers, you’re way off.  I would describe the place as an upscale campground-themed holiday resort.  There were a few campsites and places for caravans, but most people stayed in cabins.  The restaurant served excellent pizza, much better than the restaurant just outside.  There was a beautifully tiled pool area with water slides, a spa area, a pool for babies and one for swimming.  The water was of the exact temperature to be refreshing but allow one to stay inside for hours without getting cold.  It was like magic.  At all hours of the day, activities for children took place.  There was a café, a pool bar and even a fitness club.  A fitness club on a campground!  A sandy beach gently easing into the warm waters of the Adriatic was a few steps away.  The children loved it – but they got the wrong idea of what a campground is.

Coronavirus has turned the world into a different place.  A half-empty campground in high season is only one aspect of it.  The world has also become much less diverse and more separated.  People prefer to stick to home (like the Swiss) or are forced to.  These days, most tourists in Venice are German.  Gone are the Americans, the Russians and the Chinese.  Instead, there were a lot of Italians.  Most are probably (re)discovering a city they have never or only very rarely visited because it was completely overrun and almost impossible to enjoy.

I first saw Venice more than 25 years ago.  It was one of the first trips I took with my dad after the wall had fallen.  We stayed in a hotel on the mainland and spent a few days exploring Venice.  The only thing I remember is a stash of black-and-white photos my dad took.  They’re now at my mom’s.  I haven’t had the chance to look at them again, but I think there were very few people in them.  Venice was peaceful back then.

When we disembarked our ferry, I was somewhere between surprised and shocked.  There were a lot of people.  This was a question of perspective.  Photos of Venice from last year show crowds shoulder to shoulder.  I read somewhere that it was impossible to stop when walking around.  People would just push you on.  Now, there were tourists on the Piazza San Marco and around the Rialto Bridge, but not too many.  Away from the main attractions, it was quiet.  Many alleys and even some of the squares were ghostly.  It was a beautiful experience.

For those in a tight covenant with their guilt, this might bring sleepless nights.  Is it right to enjoy blissful days by the sea when a virus is ravaging the world?  It is right to enjoy places that would be much more crowded and thus less enjoyable were it not for the virus?  Are we taking advantage of the virus?  I’m not given to guilt and see no need to apologize.  We had a great time, far from our ordinary life.  Tomorrow night, things go back to normal for me.  I’ll stop eating for four days once again.