No miracle

On Tuesday, I had my second PET-CT scan. As before, I arrived at the hospital early and with an empty stomach.  I was given the sugar fluorodeoxyglucose (FDG) and asked to relax for an hour.  Ok, not quite right, I was ordered to lie motionless for an hour.  The last time I had a PET-CT, this was so relaxing I fell asleep towards the end.  This time, it was a bit less comfortable.

Once inside the body, the sugar goes to places of high metabolic activity.  If the muscles are resting, these are the brain, the heart and not much else.  Cancer cells will gobble up the sugar as well because they’re always on fire.  Because of the missing 2-hydroxyl group of regular glucose, FDG cannot be broken down and remains in the cells at least for the duration of the scan.

The key of the method is that the fluorine atom in FDG is a radioisotope that releases positrons (the opposites of electrons) as it decays.  The positrons are detected during positron emission tomography (PET).  X-ray computed tomography (CT) is used to get a clearer picture of the anatomy of the patient and to assign the PET signal to individual organs and parts thereof.

Today, I went to the hospital to get the result.  I was optimistic.  There is of course no point of being anything else when living with a life-threatening disease, but how I felt during and after chemotherapy boosted my spirit even higher.  Almost everything had gone my way.  I saw myself on the verge of becoming a survivor.  I was in for a brutal let-down.

The oncologist didn’t mince words.  “It doesn’t look good”, she said.  “We see tumors in the liver, and there’s something growing in the lung.”  There’s no point, she continued, to surgery or radiotherapy.  The signal from the liver was so diffuse, nothing would remain if one started to cut everything out that was cancerous.  It was a grim picture.

It was also a picture to be expected.  When I started chemotherapy, the consensus was that I am beyond hope and that palliative care is the name of the game.  I convinced myself that I’m not the average cancer patient and that my relative youth and relatively good physical shape will boost my chances of survival.  Diagnostics are derived from past observations, and most of these come from geezers that are falling apart anyway.  This fantasy was good for keeping me in a good mood and giving me the strength to endure chemotherapy and train on my bicycle at the same time, but it was always unlikely to amount to much.

In the examination room, I was thinking back to the last few weeks where I had plenty of wine and beer and the occasional gin and tonic.  My liver hadn’t complained.  It seemed to work just fine.  How come it’s now shown to be all messed up?  The doctor dispelled my worst fears.  The liver is still largely ok.  But what’s growing inside it will destroy it if no measures are taken.

Which measures?  What can we try that we haven’t tried before?  The first chemotherapy program was obviously not a success, but it was not the only way of attacking a cancer either.  With a few changes, the regime - based on the inhibitory effect of 5-fluorouracil on DNA replication – can be repeated.  The outcome might be better.  Or nothing will change and the cancer will grow.

Realistically, nothing will change and the cancer will continue to grow.  The patient information leaflet about the new chemotherapy says in the first paragraph that there is no cure for metastatic colon cancer.  This would be a good moment to sink into despair, curse at the world or jump off a tall bridge (of which Baden has two fine examples).  I’m not that kind of guy, and I won’t change the subtitle of this blog.

I know my prognosis.  I can still remember the first conversation with the oncologist before the first chemo started.  He was not optimistic and didn’t pretend.  Cure was not a word he used.  I know I’m screwed, but I thought that at the very least I’d be able to delay the inevitable – and maybe even achieve something utterly unexpected.

I firmly believed that the PET-CT would be negative.  It’s only one month after the chemo.  How much could have realistically gone bad?  Everything went bad.  A lot grew inside me.  Depressingly, I’m looking worse now than I was before the chemo.  This is hard to stomach, the worst possible outcome crashing into with my carefully nurtured delusion.  I could have accepted (and did expect) a regrowth of the tumor or new metastases, but not so fast.  The speed of this is frightening.

Against the odds, I still believe I have a chance.  After all, I’m relatively young and in relatively good shape.  And I have a positive mindset.  No one will survive if not me.  After getting a second opinion from a renowned oncologist at the University Hospital in Zurich, I will probably take this new chemotherapy, which will keep me busy almost until Christmas.  I might also take the mushroom supplement my friend Sean alerted me to.  It might not help but it’s unlikely to hurt.

I should enjoy the time before the second program starts as much as I can.  Now would be a good time to do all the things I’ve always wanted to do.  Visit Korea, learn kite-surfing, chase the ghosts of the Moors through southern Spain, learn the piano.  With coronavirus still holding the world hostage, most of these are out.  The piano sounds too hard and too much work.  But there are my children, my bicycles and my work.  How much more fun does one person need?

Back to normal

On Wednesday I would have had another chemotherapy session, had the treatment program not been over after round 12.  I was happy that things ended when they did.  My body was stricken, barely holding up, though I was too focused on the fight or too stubborn to recognize it.  I needed the rest.

Now that I’m fully beyond the twelfth round, I should be feeling better than I have in nearly six months.  I didn’t have such a long recovery period in half a year.  My body is reclaiming its health, however much there is of it.

I can feel it in my nose.  There’s less blood there than in a long time.  The other day, the slime in my nose was almost clear with no hint of red in it.  I had almost forgotten that this was normal.  The cold sensitivity is gone from my fingers, though this has probably less to do with the oxaliplatin fading from my system than with a ridiculously warm April.  We’ve had endless days of sunshine that called for a t-shirt rather than a jacket.  Spring has truly arrived.

Besides the lingering polyneuropathy – which I don’t like to call by its name because it reminds me of my disease – in my fingers and feet, I feel almost like a normal person again.  My bedtime has slowly shifted back to way past midnight, and I’ve started to work on the nearly 50 bottles of wine that have accumulated in our basement.

Another thing that’s almost back to normal is the public health situation in Switzerland.  The schedule for the lifting of the coronavirus-driven restrictions was announced on Thursday.  That’s when the epidemic ended for me.  If tattoo parlors are allowed back open – at the expense not only of bookstores but also of schools – the situation can’t be grave.  I cannot take any of the remaining restrictions too seriously.

We immediately decided to stop this home-schooling nonsense and send the children back to where they belong.  A day later I would read with much surprise in the news that establishments looking after young children – in contrast to kindergartens and schools –  were never subject to any restrictions in the first place.  It’s moot now to discuss what was the point of the endless exhortations to show solidarity and keep you children at home.

When I hesitantly called the boy’s crèche, the head teacher was almost enthusiastic about his coming back.  “No problem at all”, she said.  “Yesterday, we had eleven children.”  We’re clearly not the only ones losing our spirit of sacrifice, or at least our patience.  The last day the boy went to childcare, five weeks ago when things started to look grim in Switzerland, there were only three kids.

Two cheers to recovery.

For the girl, it was almost easier.  Following up on a missed call from her after-school program, I was asked whether we planned on having her attend next week.  All that remained for me to say was, sure.  Thus we’ll have a much quieter and probably more productive week ahead of us.  And it doesn’t really matter that the Corona Extra I purchased to celebrate the end of the pandemic didn’t survive the weekend.  Ignoring shopping and entertainment restrictions – which don’t bother us much – and home office, we’re back to normal already.

Off days

This post doesn’t contain much worth sharing.  It’s a plain and rather boring chronology of the past two days.  It’s also very long.  The post is purely for myself, as a reminder of how things are sometimes – when I don’t expect them to be like this anymore.

I wrote about Thursday and Friday already.  Here’s a brief recap for completeness’s sake and to turn this into a complete story.  On Thursday night, I was too weak and exhausted to ride the trainer.  I didn’t go to bed particularly early – which I probably should have – but slept well and got up with some energy.

I had to make up for the missed exercise the night before and burned my morning energy on an hour-long ride along the forest roads on the hill behind our house.  I got back in time for lunch and went back to bed right after that because I felt weaker than the night before.  I don’t think I brushed the children’s teeth.  (If I remembered better, this blog would have more content and be more reliable.  At least I’m trying to get it right.)

I developed a fever quickly and was forced by Flucha to take an ibuprofen.  In the afternoon, I felt good enough not only to write the previous post that contains the information recorded so far in this one, but also to go out and play with the children in the sandbox.  The curious spell of exhaustion and fever seemed to be over, but I wasn’t fully fit yet.  I went to bed at nine with the plan to sleep myself to recovery.  Sometimes giving your body a rest is the best one can do.

The next morning, Saturday, I should have been fine.  I got up at 7 but went back to bed almost straight away because I clearly wasn’t.  Against my habits, I skipped breakfast.  Instead, I developed another fever, stronger than the one the day before.  I got another ibuprofen and dozed for a few hours, listening to podcasts whose episodes had lain untouched because of lack of time.

The fever eventually came down, though not before lunch.  The afternoon resembled the previous one.  I played with the children outside , and even though I didn’t feel 100% all right, I thought I could see the end of the tunnel.

As it was my turn to cook, I headed back inside eventually and got busy in the kitchen.  Risotto is something I know how to do.  It was coming along nicely when I started to shake as if I were cold.  On such a beautiful day, with the children running around naked outside, I couldn’t have been.  I was wearing a warm hoodie above my t-shirt, and yet the shaking got worse.

At some point I had to stop the risotto as if I were cooking for a restaurant where they do the same and only finish it up when a guest’s order comes in.  Flucha later said that the interrupted risotto had been particularly tasty.  Even the children had dug in with gusto.  I can’t tell because by that time I was back in bed, still wearing my pants and hoodie and shaking uncontrollably.

Flucha got increasingly worried when the shaking subsided and my temperature rose.  Who isn’t expecting the worst in these pandemic times.  I got close to calling the hospital but since I was neither coughing nor did I have breathing problems or a sore throat, I didn’t really see what they might be able to do for me and let it slip.  Plus I had plans for the next morning, and they might keep me if I showed up at the ER.  Instead I took another ibuprofen.  This marked the first time I’ve taken two of them in a day.  They’re not part of what I consider a balanced diet.

But they did the trick, the second one as much as the first.  Shortly before the children’s bedtime, I was restored enough to assume my parental duties.  I read books, brushed teeth and sang songs – all with increasing irritation because I hadn’t really been up for it and wanted nothing more to go back to bed, which I did at 8.

Now the magic started, the magic that had already saved me once or twice during my journey through chemotherapy, though never to my knowledge before that.  While asleep I started sweating as if I were riding the trainer in a room without much airflow.  An hour or so later, I woke up because I was cold.  Water was evaporating from my soaked shirt taking my body’s heat with it.  I changed t-shirts and then again a few hours later when the same thing happened again.  The bed was like a bathtub.  When Flucha touched my forehead, she said, you feel fresh, and indeed I did.  The fever was gone and with it whatever infection I had harbored.  Maybe a doctor would have a simple explanation, but I have a hard time rationalizing this.

The next morning, I woke up at 6, fresh like a spring chicken.  I got up half an hour later to assume my Easter Bunny persona and hide (or rather liberally spread) a load of chocolates on the living-room floor.  Another half hour later, the girl got up, discovered the first chocolate egg, and woke her brother to start the hunt together.  I was 100% myself.

In the afternoon, we went on a bike ride by the river, my all-purpose bicycle connected to a trailer with two children inside.  We found a lovely picnic spot entirely by accident.  The girl fell off a tree but didn’t make a fuss about it.  She’s a tough cookie when she’s trying out her skills or pushing her limits.  This makes me very happy.

At night, we had a wonderful Easter dinner.  Later, I skipped the ride on the trainer.  Being out for an hour on a bicycle that appeared to weigh 40 kg was exercise enough.  On a particularly steep section of a gravel road dusty from weeks of no rain, I had the hardest time keeping traction on the wheel.  I barely made it to the top.  My body was grateful for the effort I made, and I was grateful that I was able to make the effort.

Fighting on

With chemotherapy fading into the past, I realize that no one is helping me anymore in my battle against cancer.  I don’t take any medication.  The treatment options have been exhausted for now.  Medicine makes no effort to defeat the cancer.  I’m on my own.

I’m still  fighting the cancer, except now the only tools I have are my immune system and my good spirits.  I’ll keep living and eating healthily and continue to exercise on alternate days.  I would much rather prefer to lounge on the sofa and read books or watch movies (projector bulb permitting), but that doesn’t cut it.  The cancer forces me to be a better person than I am.

It’s in my hands to give myself the best chances of survival.  The diagnosis might be grim, but resigning oneself to it has no benefits.  I might not want to sit on a stationary bicycle sweating like a pig at the end of a long day at work and evening with the children.  But I do it because otherwise I’d be hurting myself and I might be hurting those close to me.  I’ve never been much of a fighter.  I’ve usually picked the easy path, taking decisions that were obvious or expected.  This will not do anymore.  I don’t want to hurt my chances of survival.

There was a story on the BBC today about whether to use martial language in the context of disease.  Boris the Clown is apparently a fighter, which is why he made it through COVID-19 and is now recuperating.  Does that mean those who fell victim to the disease were feeble spirits that didn’t fight hard enough?  Some sensitive souls imply this, but it is of course utter nonsense and counterproductive.  If a disease is too strong or too serious, there’s no way to win, no matter how much you fight.  You wouldn’t have beaten the disease if you had fought any harder.  But if you don’t fight at all, you’re giving your disease an edge it neither deserves nor needs.  If you just lie there having therapy happen to you, you stack the odds up against you.

If you just sit on your sofa and accept the disease as your fate, your chances of a cure are slimmer than if you involve yourself in the healing process and put your energy into facing down the enemy.  To beat cancer, the best non-medical intervention is regular exercise.  If you don’t do this, you’re willfully decreasing your chances of survival.

Last night, I didn’t ride the trainer, even though it was the day for it.  I was exhausted and didn’t feel good.  Two sores had appeared at the side of my tongue, which made eating and drinking painful.  I skipped the session.  But I only skipped it because I knew I would make up for it the next day.

This morning, I went out on my bike for a purpose other than commuting for the first time since last summer when my grad school room mate Sean and I blasted (he) and whimped (me) down Mt. Hood.  For a similar experience I would need to travel to somewhere in the Alps.  Instead, I rode on the extended hill that stretches behind our house.  It’s criss-crossed with fire roads for nearly endless riding.  Today I also noticed for the first time the single tracks crossing the roads every once in a while.  I didn’t dare go down any of them on my stiff, barely mountain-worthy bike.  I was out for nearly an hour and rode a number of sustained climbs that forced me into the lowest gear I have.  No way I could have done this in September.

Last Saturday, I had my first proper climbing experience on the trainer when I rode Rattlesnake Corridor near Missoula, Montana for the first time.  This long but gentle climb starts improbably enough with a jump into a fast and twisting single track.  It’s easy to be fooled by the footage on the screen, but it’s better not to try the jump on the trainer.  After a wild descent, a steady climb over 22 km takes you up 500 m and deep into the forest.

I felt great riding this.  No comparison to before the cancer was diagnosed.  At Mt. Hood, I almost gave up on the short climb that connected the end of the downhill with the parking lot where we had left the car.  I was dangerously low on oxygen because my blood was depleted of hemoglobin.

After today’s ride, in contrast, I felt lousy.  Last night's exhaustion and mouth pain were back.  I had a little lunch to reload and then fell into a bed.  There seems to be a common pattern here.  I thought this would be a thing of the past after chemo, but I’m only one week out of it, and my immune system is far from its usual strength.  I developed a bit of a fever that should have made me call the hospital, but as I’ve ended chemotherapy, I felt the rules don’t apply anymore.  After a few hours, the fever came down and felt alright again, strong enough at least to write this post while the children played outside in glorious sunshine.  Life is good and worth fighting for.

Healthy for now

This whole corona business is starting to get on my nerves.  The restrictions aren’t particularly onerous in Switzerland, but they’re there, and they weigh on people.  Without childcare, days at the office, business trips or anything to leave the house for except panic buying, the days blend into one.  They’re all the same.

What little distraction I have comes from going to the office for quick stints once or twice a week.  The coffee makers are still producing excellence, and a few people are still around for chats.  What remains are days at home, with the children – who are good and surprisingly self-sufficient as a team of two but still only two and four years old – in frequent need of attention.

This afternoon we went out for a little walk in the bright sunshine of the first spring weekend.  This hasn’t been banned yet.  All official communication exhorts you to stay at home, but as long as you keep your distance, you’re fine.  The town should have been heaving with people, but the streets were largely empty.  I saw a few larger groups chatting animatedly, with individual subgroups, probably representing members of the same household, separated by at least three meters.

We were out on scooters, which the Swiss, taking a cue from the French, call trottis.  The kids played around almost normally but kept off the playgrounds.  No questions or discussions were necessary.  Even the boy knows how to say coronavirus and knows the term as a reason for all the changes to our routines.

In the morning, once again, I had been too exhausted for my Saturday ride on the trainer.  I took it as the desperate last calling from chemotherapy.  Laying in bed half asleep, I silently shouted a triumphant good-bye.  Chasing the kids on the trotti for 30 minutes probably doesn’t have the same benefit, but it’s surely better than a long ride on the sofa.

My rides on the sofa, on evenings when I’m not on the trainer, have been called off.  For a change, this has nothing to do with corona.  More prosaically, the lamp in my projector blew.  Given that the box is nearly eleven years old and has seen good use, this didn’t come as a surprise.  It’s nevertheless bad timing, as we’ve got into the habit of staring at the big screen on the nights that I’m not cycling.  This was indirectly prompted by the kids who, by being around all day, give us the impression of a permanent weekend.  It’s bad timing twice over as the bulb blew right before we were to watch the last episode of the Galician noble-gangsters-and-drugs drama that has entertained us for about a month now.

The upside to the enforced closure of our home cinema, is that I found the time to finish my taxes.  This is punishment I brought upon myself when I decided to file a tax return three years ago even though I wasn’t required to.  In Switzerland, most foreigners are taxed at the source and owe the government nothing beyond that.  Smart people enjoy the peace.  I thought I might get some money back because I had claims to deductions that could not have possibly been part of the equation when my tax was calculated.  Since this initial return, I’ve been required to file my taxes every year, but I’ve never got any money back nor any word that I’ve even submitted them.

With the taxes out of the way and corona having put life to a halt, the coming month is one of relative leisure.  There are no business trips, no visits, no family activities outside the home.  If the children didn’t insist, Easter might pass unnoticed.  On the upside, with no doctor’s appointments or treatments to break a routine of increasing tedium, I can feel like a healthy person until the PET-CT scan in a month.

Rest day

My last chemotherapy session yesterday started so early in the morning that I had to tape a flashlight to the handlebar of my bicycle because it was still dark outside. A few weeks earlier, some idiot had stolen the bike light that was there before. Who does this? In Switzerland! Violating a bicycle inside our building’s parking garage. There are no punks living in the building, no teenagers. I have no idea whom to suspect.

Anyway, it was still dark outside when I arrived at the hospital and the now familiar procedure commenced. I was a bit concerned about how my body might behave after the allergic reaction two weeks ago, but this time all was fine. The doctor had removed the oxaliplatin from the menu, and my body was happy about this. The liquids flowed inside me, and three hours later, it was all over.

Except, of course, nothing is over. The chemotherapy has ended but no one knows what effect it has had. What has it done inside me, besides giving me tingly fingertips, a bloody nose and hands and feet with a diminished sense of touch? No one can tell at the moment if the cancer cells have been cleared from my body. To find out, I’ll have another PET-CT scan at the end of April.

This imaging method builds on swallowing radioactive sugar that will then go to areas of high metabolic activity. As the patient remains completely motionless for about an hour before the scan, the only thing that should light up as metabolically active are cancer cells that never rest. The CT part of the scan helps localize these areas, which have to be about half a centimeter big to be seen. Individual cancerous cells will of course be invisible, as will be tiny growths. But there’s no way to see them anyway.

Flucha is trying to put some champion inside me.

In the weeks until the scan, I’ll try to recover from chemotherapy. I want my immune system – not a bad thing to have in these coronacious times – back and the sense of touch in my fingers and feet. I’m wondering what to do about the bicycle trainer. There’s no champion inside me. I’ve never been a fan of regular exercise and rode the trainer only reluctantly. Should I continue with it? If the weather picks up, I might go for rides outside instead. They say the roads are pretty quiet these days.

My prolonged rest day has started. With it, this blog will probably hit a patch of subdued activity. If nothing’s happening, there’s nothing to write about. But I promise I’ll write if something’s happening.