Last session

Tomorrow I’ll have the last chemo session of my first treatment program. This is no reason to celebrate, but I will certainly feel relief when I return the empty bottle on Friday. If the surgery that liberated me from the tumor, half my colon and assorted innards was the prologue to a long multi-stage event, chemotherapy was the first set of stages. We haven’t entered the mountains yet, though some of the hilly terrain had quite a bite. It wasn’t always easy, but the hardest part is still ahead. Now, though, I can enjoy a rest day that might stretch for months.

Throughout chemotherapy I was largely avoiding side effects. I had the cold-induced tingle in my fingers and the compromised immune system that wasn’t strong enough to defeat the cold I’ve been carrying since mid-December. Overall, it seemed all good, but now, toward the end of the therapy, compounding effects appear. It does indeed seem as if the therapy was designed to be tolerated for exactly twelve sessions. After that, the beaten body would crack.

My hands and feet feel as if they were covered in a thin layer of dead flesh. All sensations are slightly indirect. Something has grown inside me that is now undeniable. My teeth are also suffering. They seem a bit brittle. I can feel tiny chips with my tongue that weren’t there before. It’s nothing major but something that is quite obviously there.

Then there was the odd allergic reaction against one of the drugs two weeks ago. Why did this happen during the eleventh session but not earlier? Maybe cancer can’t be treated as a chronic disease as I had imagined earlier. Maybe there’s only so much abuse a body can take, and the allergic reaction was a signal from my body that it’s had enough and is ready to give up. I’ll go to therapy with quite a bit of apprehension tomorrow. The doctor won’t give me the drug that caused trouble last time, but I’m still worried what will happen. The devastation of my body must stop.

Here are some questions to ask my doctor:

• How will things continue?
• When will my hands and feet go back to normal?
• When will I get a CT to check everything is still ok?
• How long will it take for my immune system to recover? How long will I remain a card-carrying member of a COVID-19 risk group?
• Are there any drugs I’ll have to take from now on?
• Would a second treatment program include the drug that will be left out today?

Locked in

The lockdown – though it’s not called so – has Switzerland firmly in its grip.  Schools and kindergartens are closed.  Children turn themselves into permanent nuisances at home where parents who lost the luxury of their office desks try to define a new normal.  Children at home during work days is not normal.  Parents at home isn’t normal either.

For us, the situation could be worse.  We are lucky in that Flucha’s lab has been closed.  Since her work is largely experimental, there’s not much to do at home besides reading papers, revising manuals and operating procedures, and staying in contact with the collaborators on the European research project that pays half her salary.  Flucha is thus assuming most child-care duties while I, whose workplace remains operational, try to achieve some productivity at my desk at home.

The streets in our town are empty.  People aren’t ordered to stay at home, but most do.  There’s not much to do anyway, and the weather has taken a turn for the worse.  Most shops are closed.  Groceries are available and thus far unaffected by hoarding or panic buying.  The mobile phone outlets remain open as if one couldn’t extend or expand one’s plan online.  The bookstore is closed but has a sign in its down alerting passers-by to its online presence.  It offers free shipping on orders of more than 20 francs.  I didn’t even know they were online.

Restaurants and cafés are also closed.  Some offer take-away, but their success varies.  The local Subway has given up and removed the strips of black-and-yellow tape on the sidewalk that were accurately spaced to ensure social distancing.  Playgrounds are deserted, which our children don’t mind at all.

I get increasingly aggravated by the situation.  It’s the repetition that gets at me, the lack of variety.  In parts, I’m to blame for it myself.  I get up in the morning, fire up my home office, have breakfast with the children, continue home office, eat some, continue home office, eat more, put the children to bed, and go to bed myself.  There are days when I don’t move at all and don’t speak to anyone.  I need to build a routine that goes beyond the obvious.  Maybe I should go jogging during my lunch break.  Sadly, there is not much else.

I’m also aggravated by the unavoidable advice of what to do with all that extra time.  Watch Netflix, people say, but be aware that the data rate might be throttled to leave enough bandwidth for everyone.  Here’s a list of twenty books to read before life kicks back into action.  I don’t have more time than before.  Just the opposite.  Being at home, I either work or play with the children.  The time to read books is on planes, but my flight to San Francisco has long been canceled.

We’re all learning how to deal with corona. The approaches might vary, but to me it’s clear that one should try to make as few changes as necessary while staying safe.  Keep going out.  As long as you’re not in a crowd, it’s safe to go for a walk or a jog.  There are no viruses hiding behind bushes, and if you stay inside for days or weeks, you're bound to lose your mind.

The numbers from Germany indicate that young, healthy people aren’t liable to suffer complications upon infection.  They’ll just ride it out and become immune, putting a block to the further spread of the virus.  The key is to separate the young from the old, to protect grandparents and old folks from infections.  They are at risk, in particular if they have pre-existing health conditions.  I’m still undecided on where I fall in this continuum.

Half measure

Yesterday I had my second-to-last chemo session.  It was a day to forget.  All started well, though a bit early for my taste.  The doctor was happy with my blood values, even if my immune cells were a bit low.  There was not much left of the infection that had felled me ten days earlier.  I was cleared to go.

The nurse connected my port, flushed the lines with glucose and started the first set of drugs, oxaliplatin and calcium folinate.  All seemed fine.  I was working on my computer, as if the hospital bed were now my home office, productively and with my energy.  After about 30 minutes I started sneezing.  I sneezed not just once or twice but a good ten times in a row.  This is something that had happened before, not during chemotherapy but after, when I was riding my bicycle home or back to work.  I didn’t think much of it.

The nurses did.  They asked me if anything felt wrong.  And indeed, there was a tingling sensation around my lips, as if I had eaten something I was allergic against.  I was ready to blame it on the face mask I was ordered to wear when I entered the clinic, but that can’t possibly have been the culprit.  My hands were also bright red and I had a bit of a dull recurring pain below my lung.  The doctor, quickly called to the scene, blamed it on the oxaliplatin.  There was no explanation why this would happen during the eleventh session but not before.

I was injected with two different antihistamines whose side effect was described as causing drowsiness.  And indeed, a minute later I had to put my computer aside because I could hardly keep my eyes open, much less think straight.  The nurse restarted the drugs, but only slowly.  At some point they were flowing faster.  I have no clear memory of what happened.  Maybe the normal flow was reached, but it was quickly interrupted when red spots were discovered on both of my arms.

The therapy was called off.  This seemed a bit excessive to me, but excess is what rules Switzerland at the moment.  The measures against coronavirus are frequently overdone.  It feels a bit like airport security where sense is less important than ticking boxes.  In Switzerland, all shops are closed except grocery stores.  I mentioned this already.  Turns out that one of the large stores next to the train station where we shop had most of its non-food items cordoned off.  They’re apparently selling only essentials.  I wonder how underwear doesn’t count as essentials when half the country are shitting themselves with fear.  The other grocery store, meanwhile, happily sells gin and whisky as if one couldn’t survive without.

Wouldn’t it be more essential to have an optician open?  What if I dropped my glasses and stepped on them during a panic buying spree in the rice and pasta aisle?  I couldn’t do home office anymore because I wouldn’t see a thing.  And why do restaurants remain open for takeaway but not book stores?

Anyway, I was lucky that my chemotherapy was continued after my unexpected reaction to the first ingredient of the cocktail.  Avastin, the antibody, was deemed sufficiently different from oxaliplatin not to cause any problems.  And so it turned out.  I got half an hour of Avastin and then a shot of 5-fluorouracil and a bottle full of it to take home.  All throughout, I remained drowsy and never more than half awake.

A coffee and a pastry in the hospital cafeteria (still open!) woke me up a little.  I rode my bicycle home and fell almost straight into bed.  The next morning shortly after six, I was fresh and awake and ready for life.  When I return my bottle tomorrow, I’ll have to ask whether I can get the drugs that were withheld from me.  It would be a shame to do chemo only half-assed.

Drastic measures

It’s curious how this blog has taken a turn from being about my cancer to being about everyone’s corona.  Months ago I got heartfelt wishes for my health and packages of sweets for my spirit from my friends in Italy.  Now it’s me who’s concerned about them and their well-being.  They live half an hour north of Milano.

Switzerland is far from the worst afflicted country but has a fairly high per-capita infection rate and recently imposed strict measures aimed at curbing the spread of the virus.  Bars and restaurants had to close their doors.  All shops except grocery stores are shuttered.  Curiously, the old-school department store in town remains open.  It must have secured a special permit for the food department in the basement, which doesn’t have a separate entrance.

I know my way around the structures of coronavirus proteins that have been solved and published over the last month, but I have quite a few questions about the virus itself.

• Why is the virus passed on so readily?  One infected person infects on average three others unless precautionary measures are taken.  This is the R-0 value.  Is this enough to cause the epidemic we’re experiencing?  Is this what life was like before vaccines?  Rubella, measles and mumps all have even higher R-0 values but these days, they cause problems only among the vaccine-averse.  And what’s up with the original SARS virus that went close to global in 2003?  It was much more deadly than the new coronavirus but also quickly contained and infected only 8000 people.
• How long does the virus survive on various surfaces?  The two ways of infecting others are sneezing in their face and leaving viable viruses on surfaces likely to be touched by people who then touch their mouths or eyes and infect themselves.  Sneezing is easily avoided.  Surfaces less so.  Why is there no table with survival times of corona on metal door knobs, touch screens, coins?  It can’t be too hard to do these experiments to statistical significance, even if it takes a biosafety level 3 or 4 laboratory to do them.
• Why do people panic-buy toilet paper?  I’d rather stock up on wine and chocolate.  And who wants to eat pasta with canned sauce every day?  Food delivery still works, though it tends to be a bit slower than normal.

Despite all the measures taken, Switzerland still seems fairly normal.  Movement is not restricted, public transport is working (though empty), and you can go to playgrounds with your children.  I have no doubt that restriction will be tightened even further.  Tomorrow, before my second-to-last chemo, I will ask my doctor for a certificate stating that I’m very sick and that moving around in fresh air is absolutely essential for my survival.  I don’t want to be stuck inside for weeks when the lockdown comes.

Home office

The last three days I stayed at home.  My doctor tried to talk me into sick leave, but what’s the point of boring oneself to death at home?  One might as well do some work if one’s work is suited to it.  Mine is.  Besides traveling, I mostly read and write.

So I stayed at home, following, in this particular instance, the guidelines published in the morning by the Federal Office of Public Health.  I pushed my bicycle aside to make space for the chair and reoriented my screen.  The bicycle looked a bit abandoned.  I haven't used it all week.  I was in no shape for it.

My company has only recently come around to the idea of home office.  One used to be allowed the occasional day at home only after a consultation with and the explicit approval by one’s direct supervisor.  This didn’t exactly sound like encouragement of desirable behavior.  Most people worked from the office.

Now, with Switzerland firmly in the grip of the corona panic, all has changed.  For my team, the home office target has been set to 75%.  There’s a category for it in the software that manages leave and absences.  Home office is the new normal.

Better than the sofa but not a real home office.

I don’t like home office.  I like my desk at work.  It is big and adjusts in height.  I also like my colleagues and the coffee and lunch without worries.  The noise in the open-plan space makes it hard to concentrate sometimes, but I have solutions for that, in-ear headphones for example.  I’m usually quite productive at work.

I’m not sure if I can replicate this from home.  My screen is a bit smaller, my desk doesn’t adjust, the internet is slower, and the bloody bike is in the way.  I was afraid I would be easily distracted at home, but that doesn’t seem to be the case.  I rewrote an article about coronavirus and how our detectors are used to solve the virus’s protein structures without much self-interruption.

It helps that I’m feeling much better.  My nose isn’t running anymore.  I can think clearly.  I feel full of energy.  It seems that whatever infection I’ve been carrying with me is definitely on its way out, though it’s not gone completely.  The oncologist was still worried enough to shift the next chemo session by a couple of days.  It will now take place on Wednesday.

I’m not concerned about scheduling details anymore.  In the past, I had to set dates judiciously to fit them with my travels.  They’ve now all been called off.  The flight to California that was supposed to be a bit of a reward after the last chemo session went to the bin even before the American ban on travelers from countries with functioning testing programs against corona.  The workshop where I was supposed to teach was canceled a few days earlier when Stanford University went virtual because of a case on campus.  Now I have no limitations whatsoever when it comes to chemo dates.  They could be scheduled on any day.  But I’d still prefer them to happen soon and the whole thing to be over.

Just a cold

Today was the second session on the trainer in a row that I skipped.  I’m not proud of this, but even I have to admit that overdoing it is not always the best strategy.  Sunday went as expected for the most part.  I was still a bit weak in the morning but better than the previous day.  I relaxed with a book and let the children play with mommy, except for brief forays into ambitious railroad construction.

After lunch we took the train to Zurich to go to one of our favorite places.  Josefwiese is a large patch of grass at the former edge of town, bordered by a railway viaduct and an enormous rubbish incinerator, the surroundings a bit neglected.  I wrote about Josefwiese when we came there a year ago to watch a cross race.  The area stretching further away from town, starting beyond the railway viaduct, exudes a very Swiss kind of hipness, wannabe but not caring too much, somewhat forlorn among the concrete.

When we got back in the late afternoon, I felt rather poorly again.  I thought it might have something to do with the cold.  Not that it was, but I was.  I lay down in my bed, warming up, taking advantage of the 45 minutes until I’d have to start preparing the fondue.  We had bought the burning paste earlier.

As I was lying there, I could feel the cold leave my body and then heat stirring through it.  My lips started burning, then my cheeks, until my face felt on fire.  My hands were also very hot.  The time to start cooking came – I half-convinced myself I would get up if someone prompted me – and went.  When Flucha came, an hour later, my temperature was 40 degrees.  The leaflet from the hospital exhorts me to contact them as soon as I hit 38.5°ree; and warns of life in danger.  Strange thing was, I felt much better overall than at any point during the previous 48 hours.  Still tired, but certainly more alive.

I called the hospital.  The physician on duty, unfamiliar with my state and my case, wasn’t overly concerned.  He bemoaned that it’s impossible to say anything for sure over the phone and that I should come in if I wanted to know more.  They’d take blood and try to identify the cause of my misery.  As he left the decision to come to me (my oncologist later told me she wouldn’t have), I declined.  No way I’d leave my bed with a fever of 40 degrees.

Four hours later – Flucha had just finished subduing rather unruly children – I felt pangs of hunger and got up to see if there was any dinner left.  My temperature registered at just above 37.  I ate a bit, drank a lot and went back to bed, sleeping rather sweatily until the next morning.  I thought everything was over.

It wasn’t.  The next morning, I felt too weak to go to work.  Hard to explain what it was.  A bit like a strong cold.  Nose running, one ear with a strange sensation, an odd patch on my throat.  I thought I might still be able to do home office but spent most of the day in bed or on the sofa.  Today, after another sweaty night and a morning with around 37 degrees, was similar, though I made it to work (maybe not the smartest move).

The strangest thing in this entire boring saga is my nose.  It’s running blood and snot at the same time.  Every time I blow my nose – and I’ve now forced myself to almost stop it – I expunge half of the mucous lining of each nostril.  Fresh dark red blood follows.  It’s an unholy mess, far from pretty to look at, though not particularly painful.  It makes breathing difficult and sleep less restful.  I wonder how much my nose will recover.  Will I retain a sense of smell at all?  At this point, despite the minimal side effects, I can’t really wait for chemo to be over.  It’s a huge pain, even if it’s not painful, and I'm sick of it.  But it’s only two-and-a-half more weeks.

Down day

It’s now five days after my most recent chemo and three days since the portable pump was removed.  Everything should be fine.  I should be well on the way of recovery for the last two sessions.  The cold-sensitivity in my fingers should have abated and my digestion should be back to normal.  All should be good, but it isn’t.

Frequently after chemo, I get exceptionally tired.  I probably wrote a few posts that talk about this.  I was dead-tired after Christmas and after the sessions in January.  Some days, I slept away entirely.  I was not good for anything.

The previous session in the middle of February was different.  I didn’t feel bad in any way.  There were no side effects, and I was fresh.  This didn’t last.  There’s no consistency to the time after a chemo session.  All day today, I felt like a zombie.

I got up and had breakfast all right.  Flucha had heroically taken care of the boy who insisted that the night should be over at 4 am.  If he had eaten more the night before, he wouldn’t have been so hungry for his milk.  Throughout all the commotion, I kept sleeping.

After breakfast, the next – and inevitable – point on my Saturdays’ agenda is the trainer.  I really didn’t feel like riding it for an hour, but what could I do?  There was good reason for it.  Survival is always on my mind.  I sat down on my bicycle, chose the easiest route on my phone, and loaded a chess video onto the big screen that ran for almost an hour.  This distracted me enough to keep pedaling throughout, but when it was over, I was empty and skipped the last 15 minutes of the ride.  No need for useless suffering.  I have ridden enough this week.

In the afternoon, Flucha and the children went to a pool half an hour away whose biggest draw is hot water from thermal springs.  Sitting there, soaking up the heat, having a cocktail and whiling away the time would have been the perfect afternoon for me.  Chasing after the children with their boundless energy – much less so.  I stayed at home – and retired straight to bed when the family had left.

There was nothing to do.  I was too much of a zombie to stare at a screen.  I was too much of a zombie to read a book, and certainly too much of a zombie to write on my blog.  Now, towards the end of the afternoon, things are looking up a little.  I went shopping in town.  Instead of shelves raided of pasta and loo roll (as in the UK, which seems engaged in a practice run for when Brexit hits), I found special offers and plenty of merchandise.

Later, back home, I realized that the fondue we had planned is not looking good.  Our caquelon, the ceramic pot used to whip up the goo, won’t work on our induction stove.  Plus, I forgot to buy the burning paste that keeps the fondue hot.  So no fondue.  But I’m in enough of a shape to cook a little risotto.

Let’s hope tomorrow will be a better day.  And then it’s less than twenty days until the first chemo program is over.

Two anniversaries

Today five years ago was also a Monday.  It should have been my first day at the new job, but travel duties had already sent me to the US to attend a workshop at the University of Georgia.  The flight out there took place on Sunday.  It was a good start.  It taught me about the flexibility expected and the compensation offered.

Today I’m celebrating my fifth anniversary as a detectorist.  The CEO has invited me to his office, presumably for words of appreciation, but I’ve got the best possible present already.  From your fifth year, you don’t have cafeteria duties anymore.  No more cleaning of the tables after lunch, wheeling the coffee cups to the dishwasher and sweeping the floor of the crumbs from the breakfast rolls and croissants.  Nearly everyone has to do this every half year or so for a week, but I’m free from it now.

Another anniversary is more immediate.  I’m celebrating my tenth chemo session today, if celebrating is what one does with chemo sessions.  I’m taking the drugs quite well, so celebrating doesn’t sound too absurd.  But even if not.  I would expect most patients in my situation who are less lucky also to raise a glass.  After all, it’s only two more sessions to go, and now matter how well or how horribly the sessions go, one has to be excited about the end.

Before reporting for the infusion, I had a quick chat with the oncologist about the near future.  What will happen once I won’t have bi-weekly appointments at the clinic?  The doctor had no words of justified encouragement about my disease, but the next steps are clear.  I will be released into relative freedom with a CT scan after the last session.  Then, there will be CT scans every three months or so to monitor my continued good health – or detect fresh malignancies, depending on how positive your outlook on life is.

The looming CT scans made me think about my reaction to the one I received a few weeks ago.  I couldn’t understand its point.  How can anything grow when I’m in therapy?  Now I look at this a bit differently.  Why not continue the therapy if nothing can grow during it?  I don’t suffer from side effects.  I could live with this cancer as if it were a chronic disease – if it were certain that the cancer is in full submission during therapy.  That CT scans are scheduled during and right after the chemotherapy program tells me that things are not that easy.  The cancer is certainly suffering, but it hasn’t given up yet.

If nothing worrisome is detected after a year, further CT scans will be space more widely.  Despite my generally positive outlook on life, this is not something I really expect.  The diagnosing doctor was quite clear about the high likelihood of the cancer recurring after chemotherapy.  There might be metastases in the liver or the lung that won’t be as easy to remove as the primary tumor in the colon.

Maybe I’m lucky.  I’m not ruling this out.  In fact, in a case of irrational optimism, I half expect this.  The numbers on which my dire future is predicted come from patients most of who are in a worse shape than me.  Most are old, most aren’t as active as me, some might worry themselves into a state of despair.  I’m relatively young, strong and ready to throw more  punches than the cancer can take.  I might yet surprise my doctors and – even though I wouldn’t admit this – myself.