Borrowed time

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

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

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

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

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

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

Happy New Year!

Immune system

The hippest thing to hit Switzerland next year, according to the magazine our grocery store sends us every week, will be switchel, a drink that has already taken New York by storm and, in all likelihood, fallen out of favor there by now, replaced by the latest fad.  Does anyone still remember the cronut?

Switchel is a mix of apple vinegar, lemon juice, ginger and maple syrup.  Claims to hipness are one thing.  Switzerland doesn’t do it very well.  It’s a profoundly unhip country and isn’t much bothered by it.  Maple syrup is quite another.  I don’t think one can buy this here.  Maybe the three people pretending to be hipsters are going to find a way.

Switchel is good for you claimed the magazine.  It’s supposed to kick your metabolism into gear – not a bad idea after Christmas – and give your immune system a boost.  I perked up when I read this last piece of information.  The immune system is my best hope of ridding my body of the cancerous cells that chemotherapy misses.  What would be wrong with giving it a boost?

It’s easier said than done.  The immune system is exactly that – a system, and simple adjustments are unlikely to have unambiguously positive outcomes.  Turn a screw here and another one might go into reverse somewhere else as a response.  Increase the number of a certain type of immune cells might have adverse consequences, much like blood doping in cycling increases the risk of a stroke.  The immune system isn’t a simple bucket where one can add good things one by one until it’s full and at its full power.  If that were the case, no one would get sick anymore.

Reality is messier, unfortunately.  A blog post on the Harvard Medical School website has a good summary of the few systemically positive things for the immune system.  They are:

• A diet high in fruits and vegetables.
• No smoking and little alcohol.
• Regular exercise.
• A healthy weight as a result of the three points above.
• Dodging infections.
• Sufficient sleep.
• Avoiding stress.

This is a boring list.  My immune system gets at least six of these benefits.  Sufficient sleep might be the only missing ingredient, though maybe the few hours I sleep are sufficient.  During chemotherapy sessions my body tells me otherwise and I sleep much more.  (I don’t quite understand the benefit of dodging infections.  Doesn’t the immune system learn from infections and get stronger?  Aren’t adults healthier the more they were exposed to germs as children?)

I would like to do my immune system good beyond what’s on the list, but there are no silver bullets.  Maybe there’s something to the mushrooms I wrote about earlier.  I think I saw them in the forest the other day.  They’re claimed to strengthen the immune system, a benefit purportedly shared by methadone, but there are no clear mechanisms of action.  I remain skeptical.  What can I do besides exercising and eating well?  Following short-lived fads is not going to cut it.

Fasting and feasting

The other day, a friend passed on some tricks on how to beat cancer.  According to Russian scientists that are largely ignored in the west, fasting is key.  The reason is this:  When cells are starved, their membrane permeability changes, which protects them from the assault of chemotherapeutic toxins.  Cancer cells, which proliferate no matter what, have no such safeguards and receive the full force of chemotherapy (*).

I’m grateful for anything that makes me think about cancer and understand more about it.  With what I know already, my friend’s suggestion makes sense in one case only.  If a patient suffers from unbearable side effects, protecting healthy cells from carcinocidal toxins is probably quite powerful.  The therapy can continue for longer.  For patients whose side effects are tolerable, however, fasting is not a good idea.  There are two reasons for this.

When outlining what was about to come, before the beginning of chemotherapy, my doctor was adamant that eating was one of the best things I could do.  On the one hand, the body uses more energy as it fights cancer.  The more I eat, the more I've got to fight the evil.  On the other hand, eating too little – whether because of the very common side effect of nausea or because of general un-wellbeing – can take a patient to a state of feebleness that can eventually lead to a premature end of the therapy.  This is not something I’d want.

Gaining weight was one of my top priorities right after surgery and up to the first few chemo sessions.  It was a stony path with a few setbacks, but I’m now back to where I used to be, never mind the missing half-colon.  I am convinced that being physically strong helps me endure chemotherapy better.  The weakness of the side effects is probably related to this.  Being strong also helps me exercise with force, which boosts my immune system and stimulates it in its fight against cancer.  Eating is unambiguously good.

Wholesome home-cooked Christmas dinner.

Christmas is of course the best time for eating.  For our big meal, I had prepared duck breast, a dish I had first cooked on the same occasion seven years ago, and finger dumplings made from scratch (potatoes, flour and egg).  My mom contributed Brussels sprouts, and I added a pineapple panna cotta that was much softer than my first try but also much sweeter.  It was a good dinner.  It filled me up and made me happy – and put me in the mood and right mindset to beat this damn cancer into a defunct pulp.

---

(*) I misunderstood my friend or maybe he misremembered.  A documentary on Arte, a French-German TV station, shows how Russian scientists in the 1960s studied fasting but not as a way to treat cancer.  They discovered that prolonged fasting has an effect somewhere between beneficial and curative for a large number of ailments, from mental disorders to arthritis.  To this day, a clinic near Lake Baikal welcomes patients who fast for two to three weeks.  A notable contraindication to fasting is cancer.  It’s hard to see how you can fast for three weeks while undergoing chemotherapy.  The connection between periodic fasting and a better response to chemotherapy that I’m all excited about was later discovered in Valter Longo’s lab in California.

Merry Christmas

As I lie in my hospital bed, waiting for the toxins of the fifth session of chemotherapy to make their way into my body, there’s time for one last post before Christmas.  This year’s festivities will obviously be different from the past’s.  The Christmas of my childhood is long gone.  I’ve  written about it at length in my other blog (e.g. Christmas Revisited).

For the last four years, I’ve developed my own tradition.  This tradition of my family and children has involved flights to Argentina, by way of Frankfurt or London, with morning arrivals in Buenos Aires on Christmas Day to skin-melting temperatures.  Flucha’s dad, called Lolo by the children, would always pick us up at the airport and drive us home where we would try to recover from the long flight and survive until Christmas proper, which is celebrated at midnight with champagne, gifts and fireworks throughout town.  Though all are exhausted from traveling, and the wait is brutal, I’ve not yet been able to move the celebration forward by a few hours.

Chemotherapy is becoming another tradition.  I've done four sessions already, and they're the same every time.  The side effects should be the same as well.  The only expected difference is a deterioration, a worsening of the effects.  The doctors warn that if they become unbearable, the dosage might need to be adjusted.  In my case, it's been all different so far.  Only one side effect has got slightly worse.  The tingling in my fingers, induced by the cold, can become painful quickly, especially during the first few days of a session.  I need thick gloves even if it’s not particularly wintry outside.  When I’m inside, I have less command of my fingers than normally.  Typing is more effort.  Towards the end of the session, the effect is almost gone, but at the beginning, it is spreading.

I feel it in my throat when I drink cold water.  I also feel it in my eyes when I ride my bike.  This is the strangest thing.  It’s as if my eyes were freezing shut.  I can see a bit but not a whole lot.  My eyes are like slits.  This keeps me from riding through the forest but the road should be fine.  This is not a problem at the moment.  With Singapore last week and the trip to Germany before that, I haven’t ridden my bike to work much – and I won’t over the next two weeks.

Another side effect that bothered me a lot during the third session disappeared during the fourth.  I hope it stays that way.  During the third session, I was kept awake for a few nights by an urge to pee when I couldn’t, and woke up frequently during many more nights.  I had uncomfortable sensations at the tip of my membrum virile throughout the day.  I feared this would get worse but I was lucky.  The fourth session didn’t spark any of this, and I was free of discomfort.

What has stayed with me is the damage in my nostrils.  When I blow my nose, the result is red.  I’m not bleeding from the nose, but sometimes it feels as if I were close.  In Singapore, or back in Switzerland, I got caught a bit of a cold.  Probably something to do with the drastic changes in temperature.  This doesn’t give me nose a rest.  The doctors said mucous membranes would be hit hard by chemotherapy.  They’re made up of quickly dividing cells, after all.  I count myself lucky that my mouth and gut haven’t suffered any damage.

Flucha and the children have already arrived in Argentina.  They are playing with and getting scratched by auntie’s new puppy and eat the things they eat only once a year.  I’m in Switzerland with my mom.  It will be a strange Christmas, but we’ll make it a merry one.

Week in review

We spent last weekend in Germany.  It was my dad’s 75th birthday.  My sister had arranged everything.  She found the hotel, a castle above a city that we had chosen because it was located such that the drive was about the same for each of us.  She had booked a package with an excursion to town, tea one afternoon and a big celebratory dinner the night before the birthday.  The lot wasn’t cheap, but we had a lot of fun and we spent more time together as a big, though still incomplete, family than we had done in a long time.  The kids – ours and my sister’s – had a blast.  They romped through the castle and discovered new things all the time.  On Sunday, we drove back to Switzerland and at night my plane took off for Singapore.

Singapore was a bit of a letdown.  The conference was a dud.  There were more than four hundred attendees, but traffic at our booth was very slow, and the scientific program didn’t excite me to venture into the freezing lecture theaters.  The conference was held at the National University, which didn’t seem surrounded by anything worth seeing.  Neither was our hotel, ten minutes away.  Besides the hotel, the university and the view from the windows of the taxis shuttling us back and forth, I didn’t see much of Singapore.

View from my hotel room.

For being a densely populated city, Singapore exudes a surprising degree of calm.  Traffic is easy.  The number of cars is apparently – and very sensibly – regulated by high taxes on their purchase and the requirement of a license to operate.  Together, they can easily push the price of a small car to three times of what you’d expect to pay.  For sensible policies, it seems to help to have a government with a certain aversion to dissent.

Singapore enjoys a tropical climate.  It is warm during the day and slightly less so at night.  It is warm in summer and warm in winter.  The concept of seasons has little meaning there.  It is never oppressively hot.  The sun is often hidden behind thick clouds that frequently empty themselves on the town, refreshing things a bit.  The drawback is the humidity that hovers between 95 and what feels like 110 per cent.

Most mornings, I went for a run in the string of elongated parks near the southern edge of the main island.  One of these parks was a secondary rain forest, full of lush greens with enormous leaves and colorful flowers.  Signs warned of monkeys and exhorted appropriate behavior.  Do not carry plastic bags when encountering a monkey, one prohibition read, though how one is expected to anticipate a monkey while deciding whether to set out for a walk in the park with or without a plastic bag was not revealed.  Don’t feed the monkeys, read another.  I didn’t see any monkeys.

These were my first runs after being diagnosed with cancer and having half of my colon removed and my hemoglobin values largely restored.  I enjoyed the runs, but my speed wasn’t what it used to be before my red cell count had dropped.  My usual five-minute (per kilometer) average was quite a bit out of reach.

This surprised me a bit.  With my regular rides on the trainer, I’ve got my legs back to where they should be, at least visually.  Right after the operation, they were pathetic sticks that scared the shit out of me.  I looked a bit like a starving child in Africa.  Now they are muscular and pleasingly sculpted and still free of fat, but not all is good yet.

Having never used a power meter or sat on a bike trainer before, I have no way of judging my physical shape with any accuracy, but I had the feeling I was doing all right.  The runs in Singapore told me otherwise.  At the very least, I need to keep up the work to get back into a halfway decent shape, never mind surviving cancer.

We went to dinner one night in an area of colonial remnants given over to the demands of youthful nightlife, with bars, restaurants and roof-top terraces, but even there we didn’t walk around much.  It wasn’t the trip for it.  I should have come a day earlier or left a day later, but there wasn’t the time for it.  After the conference dinner, the night before the conference ended, I headed to the airport for the overnight flight back to Zurich.

During our night on the town, we ate in the Coconut Club, a restaurant so hip it couldn’t be bothered with a proper menu.  There was just one main dish based around a big chunk of grilled chicken or a fried fish.  Diners customize the experience by picking from a large variety of side dishes.  In our case, these turned out unnecessary, not because we aren’t individuals but because the main dish was plenty.

Drinks, like cars, are extremely expensive in Singapore.  We stayed briefly in a rooftop bar but headed back to the hotel quickly.  This wasn’t the trip for sight-seeing or merriment.  I should have come a day earlier or left a day later, but there wasn’t the time for it.  After the conference dinner, the night before the conference ended, I headed to the airport for the overnight flight back to Zurich.

The plane touched down shortly before 8 am.  I was home by 9:30.  Less than eight hours later, I’ll be back at the airport to see off Flucha and the children.  As every year, they are going to Argentina for Christmas.  I’m staying in Baden for chemo, with my mom a much appreciated company.  Not much is going to happen in the next two weeks.

Going away

On Monday, I had my fourth chemotherapy session.  Each one starts the same, with a blood test and a consultation with the oncologist.  This one was nevertheless a bit different.

The blood test was ok.  My numbers are good.  My red blood cell count is towards the lower end of the physiological range, but that's not surprising.  The only old blood test that I found in my documents showed virtually the same numbers. That was when I was living in Grenoble and cycling the Alps every weekend.  It's a wonder I managed to get up the mountains at all.

The consultation with the doctor was also not different from before, except in one important detail.  The doctor who had cared for me from the beginning, a trainee at the start of his career, had moved to a new position in a different city.  I was sitting opposite a woman not quite as young as my previous doctor, but still pretty junior.

I don't mind young doctors too much.  Experience obviously counts more than anything in medicine, but treating cancer patients, especially colon cancer, is no isolated craft.  The initial diagnosis is discussed at an interdisciplinary tumor board where a wide range of specialists weigh in on the options and agree on a treatment plan.  Once chemotherapy has commenced, it's just a question of making sure the patient can handle the chemicals and has no strange reactions.  All the treating oncologist does is follow a previously agreed strategy

If everything goes according to plan, there are no more decisions to make. Every two weeks, the doctor does a quick physical to verify that the patient is still alive, checks the blood test, and calculates the amount of drugs based on the weight of the patient.  I could do this myself.  Having a trainee doctor do this does no harm and yet, I didn't like my doctor.

He did everything right and was correct and friendly, but I never warmed to him.  He had a way that didn't work for me.  He was too young to be genuinely confident and confidence-inspiring, very much the opposite of the surgeon who took my guts out. The new doctor is somewhere in between, more empathetic and warm.  This gives me better vibes when I sit in her office, but it doesn’t change my therapy one bit.

The people that make a difference during therapy are the nurses.  They are amazing for the most part.  They care.  As soon as a patient walks into the outpatient cancer clinic, they offer water and coffee and make the patient feel at home.  The nurses attach the drips, draw blood, change the solutions, and rinse the port and lines.  They run around from patient to patient, always with smiles on their faces.  They remember names and personal details.  It wouldn’t be the same without the nurses.

The therapy took just about three hours this time.  As always, I took a balloon pump home with me for another 48 hours of goodness delivered into my circulation.  Yesterday, I had the pump removed.  Today I felt slightly nauseous but not so bad as to keep me from eating or cycling.  I did the Rockabilly Race loop tonight at a pretty good pace - and this is the last you’re going to read from me for a while.

Tomorrow we’re all driving up to Germany to celebrate by dad’s 75th birthday, a family get-together in a town halfway between where my sister, my dad and I live.  On Sunday, we’re back in Baden, but I’ll continue my travels by going to Singapore for a conference.  The heat will do me good!  When I’m back, it will be almost Christmas - and about time for the fifth chemo session, conveniently scheduled over the holidays.

Side note

Not much continues to happen.  This is good for my well-being and my sanity, but it doesn’t make for good reading.  I’m reminded of the cancer only when I’m in the hospital for therapy and during the two days afterwards when I carry the balloon pump with me.  In between two sessions, I ignore it.  This has two immediate effects.  The good thing is that I’m relaxed and free of worries.  The bad thing is that I don’t think and read about it nearly enough.  I don’t know much more about colon cancer than I did before I had it and cannot contribute intellectually to my treatment.

Last Saturday, we baked Christmas cookies.  This was a big thing when I was a kid.  I remember long days in a hot kitchen full of flour and the smell of baking.  It was always fun.  Each batch ended with me and my sister licking out the bowls of unused dough.  If this sounds like a recipe for bellyache, we never got one.

My mom’s memories might be different.  When I asked her two weeks ago whether she wanted to run our baking operation, she unambiguously declined.  I don’t blame her.  As an adult, I don’t enjoy baking nearly as much as I did as a kid.  I made a couple of different doughs, rolled them out and had the girl cut the cookies and decorate them.  She did it eagerly during the first round but lost her enthusiasm quickly.  In the end, I spent hours in the kitchen by myself.  Now we have four large containers full of cookies, but who’s going to eat them?  The children seem to have forgotten them already.

On Sunday, I took another early-morning trip to London, much like four weeks earlier, except this time I drove towards Oxford and not Cambrige.  I taught at a course, did some Christmas shopping, talked to colleagues at the synchrotron, and drove back so late that I didn’t have much time for anything at the airport.  After crawling through security, I walked to the gate and boarded right away.

While I was gone, Flucha and the kids decorated the house.  The Christmas tree was invited back in after surviving a year on the balcony.  There are lights everywhere and many crafty little things that Rulos can never resist.  Every day, something shatters on the floor or is ripped to pieces by little hands.  Only my pyramid and smoking man remain safely out of reach.

None of this has anything to do with the reason I started this blog.  This post could appear on my other blog without any changes.  This is good because it means I’m doing well, but it’s also strange.  Before I started chemotherapy, I imagined unimaginable suffering.  Nausea, bleeding, loss of appetite and hair, a drop in white blood cells correlated with possibly life-threatening infections – none of this has yet come to pass.  My blood isn't any worse than at the beginning.  The heroics of fighting cancer that I anticipated with a writer’s eagerness for agony in the service of a good story, so far they’re a dud.

It’s not as if there were no side effects.  My fingertips tingle whenever I’m out in the cold, but it’s not bad enough to keep me from cycling to work.  There’s some blood in my nose.  Unfocused discomfort in parts of my anatomy that are best left unexposed publicly is a nuisance.  A frequent urge to urinate with nothing to show kept me up a couple of nights during the previous chemo session.  This time, they symptoms were much milder, and I slept through all nights, but I’m dreading their recurrence.

On Monday, the fourth chemo session starts.