Dark Sunday

Today started like yesterday.  I had slept a lot, though, after a couple of episodes of Better Call Saul, not quite as much as the night before, and felt all right but not fully restored.  My innards were still in modest turmoil.  Strangely, but consistent with the previous days, the liver sent no signals of being irritated.  I didn’t eat much for breakfast, and when Flucha started decorating our home for Christmas with the children, I stayed out of the way.

I stayed there for much of the day.  It was the slowest day in a long time, but that was quite all right with me.  Besides hanging our big Herrnhut star above the dining table, I couldn’t justify much action.  Outside, it was frigid, moist and miserably grey.  The Limmat valley isn’t very attractive in winter.  Clouds tend to hang low.  Morning fogs cast a depressing tinge over town and country.  The sun shows only sporadically.  Now, there aren’t even Christmas markets to lift the spirits and provide opportunities to warm up from inside (not that I’m drinking alcohol these days).

As the day progressed, my condition improved slowly.  Flucha commented at some point that I was looking less yellow.  This was certainly true for my eyes, which had looked a bit like Michael Jordan’s when he was interviewed in Last Dance.  My bilirubin levels must have come down a bit.  But another handy measure told me it was too early to celebrate.  My urine was still of a darkness quite distinct from that caused by dehydration.  When you don’t drink enough water, your urine becomes more intense because the liquid is more concentrated, but the hue stays essentially the same.  With high levels of bilirubin being cleared through the kidneys, urine becomes much darker.  I don’t need to go to the hospital to find out whether my bilirubin levels are excessive.

We didn’t set foot outside all day.  The children played happily in a home that sparkled and glinted.  We all listened to Christmas music.  Flucha kept adding decoration from her vast collection.  I felt sluggish and out of energy but otherwise fine and stayed on the sofa most of the day, reading the latest issue of Granta that had arrived the day before.  The life cycle and survival strategy of the freshwater pearl mussel, a creature that can live to 300 years in the cold waters of Norway and Finland, is quite fascinating.

Towards the end of the afternoon, the idle day showed its effect on me.  Not doing anything tends to wear me out more than long days at work.  After a tiny dinner, all that I could muster, I took a quick nap because I was close to collapsing.  With the children in bed, I’ve come up to the office to start the week early or, in light of Friday’s disaster, finish it late.  This has indeed woken me up.  Tomorrow at 8:30, I’ll be back at the hospital for another blood test and what will hopefully be the last consultation before the CT on Thursday.  The liver needs to get its act together and stop causing trouble.

Black Friday

Yesterday was a day to forget.  I spent the first two hours – after the girl trotted off to kindergarten – in hospital.  This marked the third day in a row I’ve shown up there, something I’ve not done before.  When I’ve done poorly in the past, they’ve just kept me there.  The procedure was the same as on the previous day, minus the ultrasound.  I gave a little blood and waited until the results were ready to discuss them with my doctor.

Normally, I would whip out my trusty AirBook in a situation like this and do work.  With reliable wifi, working from the hospital is much the same as working from the airport or working from home.  Yesterday, it was a bit different.  I was locked out of most of the services I rely on for work.  Late the day before, I had got an email from IT to change my password.  My details had apparently shown up on a list of compromised accounts.

I proceeded to change my password immediately, correctly typing a very cleverly chosen new password twice into the appropriate boxes.  When I typed it for the third time, a few seconds later, to access my email, I was denied.  Wrong password, the server claimed.  How did I not remember my password from one moment to the next?  Had I typed something else from what I had intended, as if on autopilot?  Can one do this twice in a row?  I will never know.  The consequence was that I was locked out of email, calendar, chats, meetings and a fair share of the intranet.  My phone was as crippled as my computer.  There wasn’t much work I could do.  I had not been aware how much of my daily business is driven by incoming emails.

The test showed that one of the liver markers had continued to rise but most were plateauing or even going down.  This came as a relief to the doctor who still had no clue about what was going on.  He saw no need for drastic action (based on what, anyway?), but didn’t let me get too relaxed.  If you need to come to the hospital this weekend, he said, I’ll be in for a few hours each day.  What might make me go to the hospital, I asked.  Pain, fever, he replied, vaguely.  Not exactly reassuring, but nothing concrete to worry about either.

Later, at work, the day continued slowly.  I read a few papers and missed a few meetings until a colleague came down to do some work in the lab.  She was also kind enough to show me my calendar.  By that time, the admin had reset my password.  I thought everything was ok now, but I was wrong.  Accessing company online services requires two-factor authentication.  When I had set this up, I had not chosen my regular phone to receive text messages with the authentication codes but an older one that knows nothing about the internet.  It’s not exactly two levels of security if you receive the code on the same device where you’ve just typed your password.  Problem was, the phone was at home on my desk.  If I hadn’t had things to do in the lab, I would have cycled home in a jiffy, but that didn’t happen until a few hours later when it was already dark outside and the evening well underway.  It wasn’t exactly a productive day.

That I didn’t feel great hadn’t made it any better.  My belly kept sending signals of persistent distress, and I got more tired by the hour.  When I arrived home after failing to achieve much in the lab, the cheese for our weekly raclette was already out of the fridge.  This temptation passed me by completely.  I went straight to bed, without dinner, and fell asleep almost instantly.  I got up once for water but otherwise slept a good thirteen hours.

Things looked better today.  I woke up refreshed.  The taste of ketone bodies, one of the side effects of fasting, had gone from my mouth.  I was ready to eat.  After this bright beginning, the day darkened by the hour.  My exhaustion returned.  My insides recommenced their quiet revolt.  It didn’t feel good being myself.  Maybe that’s not surprising two days after the end of the 24th chemotherapy session, but it’s not something I’m ready to accept.  Despite its grave betrayal, I still like my body and expect it not to let me down.  It has failed me for a few days now, without giving a clear indication of why.  I can only hope things get better as the weekend progresses.

No sense in numbers

Yesterday’s saga continues, a conclusion not in sight.  I got a call from my doctor in the morning, asking to be at the hospital at 11 for the blood test and an ultrasound.  As I had the pump running through my port, the nurse who drew the blood had to do it the old-fashioned way, from a needle in my vein.  This is a much less pleasant experience than having a pin pricked into one’s chest, strange as that sounds.

The ultrasound was quicker than the one I got last September when the cancer was first diagnosed.  This time, there was much less to see.  I’m definitely not pregnant.  That was the first observation.  It caused me some relief.  The second observation concerned my gallbladder, which the certified ultrasounder found hard to pinpoint.  I told him I had shed it last year in an operation that started as a little puncture in my belly and escalated into a cut from my ribcage to my pelvis.  During fasting, the gallbladder can shrink quite a bit, the doctor said, but this makes much more sense.

This was essentially the extent of the ultrasound.  The doctor pointed his sonic head here and there, pushed and poked, but couldn’t find anything that could explain the elevated liver values.  Straying further, the kidneys and the pancreas looked good.  The spleen as well.  I’m somewhat surprised I still have it.  Isn’t that a bit of a useless organ?  There was nothing worrisome at all.  Ultrasound being a low-resolution technique, there’s no guarantee that something evil isn’t lurking undetected.  For this, I’ll get the CT, which remains scheduled for next Thursday.  There was no reason to push it forward.

When I saw my doctor again, half an hour later, he looked perplexed.  To his surprise and also to mine, my liver values were even worse than the day before.  Bilirubin had essentially stayed flat, but the transaminase levels had doubled.  These enzymes make it out of the liver and into the blood only when there is liver cell damage, says Wikipedia.  There’s no evidence for such damage and no clear reason, said the doctor with considerable bafflement.

He kept asking whether I was taking any new medicines or had consumed anything out of the ordinary over the last few weeks.  I have not.  I follow the Waterboy’s advice and don’t do drugs, unless it’s absolutely necessary.  If anything, I’ve stopped a drug, or something masquerading as such.  The last few capsules of coriolus powder have been sitting in their tub for a while now.  I have no intention of restocking them.  To rule out any external influence, the doctor ordered the pump with 5-fluorouracil to be removed.  It was still half full, but it was also the 24th bottle I’ve received (adding up to an impressive 2.5 l of 5-FU solution).  A little bit less won’t make one bit of a difference.

When the nurse removed the pump, she took more blood for yet another test of my liver values, to see the progression is.  This one was only two hours after the previous one.  I’ll give more blood tomorrow morning and will have another consultation with my doctor.  I judge the chances that we’ll learn anything as rather low.

It’s a strange situation to be in.  Every time that I’ve received bad news in the last year and a bit – and there have been plenty – there has always been an explanation.  There’s the cancer, there’s continued growth, there are metastases.  All easy to understand.  Now, there’s nothing.  The numbers aren’t where they should be and no one has the slightest clue why.

I haven’t yet given up on my hypothesis that fasting caused all this commotion.  It could be that it takes a few days after breaking the fast for the numbers to come down.  It would be reassuring to see the growth stop or even revert course tomorrow.  I’ve written the same about my cancer a few posts back, but here I’m more optimistic.  Am I on a double downward spiral, a double helix of doom?  If the values keep rising, my liver might give in.  Does this sound bleak?  Luckily I’m not one to worry unduly about things I have no control over.  It’s going to be ok.

Breakfast before time

On Sunday night I started fasting.  I’ve stopped counting how many times I’ve done this now.  It’s not a big deal if you’re used to it.  If you do it with any regularity, your body knows what’s coming and knows how to react.  It probably adjusts its metabolism somehow.  I never feel hunger.  All I do is have cravings and imagine meals.  I frequently check recipes online.

Yesterday towards the end of a long day of working from home, when I stepped out for a short walk to clear my head and exercise my legs, I grabbed a few pecan nuts and munched them on the way.  Later, I opened a pack of peanuts and had a handful every now and then.  It didn’t add up to much, but it certainly wasn’t fasting.  What’s going on?

It’s not that I’ve given up or given in to my inner demons.  At least that’s not how I see it.  I’m simply sick of fasting and have lost a bit of my enthusiasm.  Maybe I’m not strong enough to continue.  It doesn't help that after all these weeks, I don’t see the point anymore.  Fasting was supposed to help me slow down or even revert the course of the disease.  It hasn’t done the latter, and I have no way of knowing about the former.  I can’t say it hasn’t done me any good.  Without a negative control, I simply don’t know.  Before the last chemo, it’s unlikely that fasting versus not fasting is making a meaningful difference.

In addition, the few nuts that I ate probably fall under the definition of fasting-mimicking diet, with reduced calories for the day, lots of fat and protein, and very little sugar.  Some research says that a fasting-mimicking diet is as good as all-out fasting in its effects on cancer.  If this all sounds like lame excuses and far-fetched justifications, it’s because it is.  I don’t deny that.  I failed to carry my plan through.  Today I found out that I shouldn’t beat myself up over it.

Before the chemo started, the nurse took some more blood to repeat the test of the liver markers.  I didn’t hear anything back while I was in the hospital undergoing treatment.  It was another uneventful session, but at night the doctor called to tell me that all the numbers had shot up again.  He was at a loss for an explanation and told me I’d get an ultrasound and maybe even a CT tomorrow, to find out what’s going on.  The times haven’t been set yet.  There is an urgency to it all this that would cause less stoic people to freak out with worry.  Flucha didn’t look happy over dinner.

After a few days of thinking about this, I don’t think the cancer has anything to do with the elevated numbers.  If it did, they wouldn’t go up and down like this.  I don’t think the chemo has anything to do with it either.  Today’s values expose my liver before chemotherapy.  As my favorite detective was fond of saying, after excluding the impossible, whatever remains, however improbable, must be the truth.  In my understanding, the only explanation that remains for the worrying liver markers is my fasting.  I started this three days ago.  Last week I didn’t fast.  Two weeks ago I did.  Surely the liver feels this.  Taking this reasoning one step further, I drew the only conclusion that’s logical to me.  I broke my fast with two juicy burgers generously garnished with fry sauce.

On the day that Diego Maradona was admitted to the celestial all-star team, joining the likes of Garrincha, Eusebio, Ferenc Puskàs, Fritz Walter and Alfredo di Stefano for some sublime football, I arguably have better news.  I’m still alive.  The tests tomorrow will hopefully paint a clearer picture of what’s going on.  I expect to start the run with another blood test.  Reduced liver markers would firmly point the finger at the fasting  I’m quite convinced fasting is to blame, maybe in conjunction with the antibody.  If that's what it takes, I would gladly end fasting.  It’s nothing to improve my quality of life.

Ominous sign

I got a worried email from a friend today.  He was wondering why I hadn’t written about the second blood test last week.  This test was supposed to rule out any seriousness of the extraordinarily high liver values a week earlier.  My friend read my silence as an ominous sign and wondered what was going on.

Quite right he is.  I had planned to report back on the day of the test – as I should have.  Many readers of this blog are friends who are deeply concerned about my health and well-being.  You draw your conclusions from a post with potentially bad news, especially if I stay silent for a week and do nothing to relieve your worries.

I am sorry for the silence.  As with my first blog, born in 2006 in Grenoble, I can feel how I’m slowly losing interest.  According to Google Docs, I have written more than 75’000 words.  Sometimes it feels as if I’ve said it all already.  When I sit down to write in moments like this, I get disenchanted quickly.  There just isn’t all that much to write about.  Nothing is happening day to day that I haven’t covered already.  I could have simply reported the results of last week’s test, but then it would have been fit for a tweet, not a blog post.  I had nothing to pad the little fact and turn it into a story, no context or related observations.

I still don’t have anything to go with the test, but at least I’m in the fourth paragraph of this post already.  I went to the hospital shortly after lunchtime, had my port punctured and connected to a piece of tubing and a syringe that the nurse used to draw a few vials of my blood.  This is the serious version of the blood test, not like the half milliliter they take from my finger before each chemo session to get an idea of the levels of my blood cells, and it’s not done every time I’m in the hospital.

The blood was tested in house but not instantaneously.  Theranos remains a fiction.  I sat down in the waiting room to work on my laptop, half an eye always on the clock because of an important meeting later in the afternoon.  After about an hour, the doctor appeared all smiles and asked me into her consultation room.  She looked happy, almost giddy.  My liver values must have caused her a lot of grief.  I could tell that a weight had fallen from her shoulders.

The liver values had been bad.  The doctor’s concern – though she hadn’t told me, waffling on about the side effects of my therapy – was that a tumor had grown large enough in the liver to block a blood vessel and cause the build-up of all sorts of substances.  I suppose this is still a possibility.  The vessel might have found a way around the blockage.  The doctor wasn’t concerned at all.

The blood values were much better than a week earlier.  Most readings, acronyms for the most part, meant nothing to me.  The only term I recognized was bilirubin, a substance synthesized – in my layman’s understanding of human biology – in the gallbladder, an organ I lost in last year’s operation.  What’s important is that most values had dropped quite a bit from the heights that had so frightened my doctor.  Some were almost down to normal.

The doctor didn’t have an explanation for why the values had been abnormally high a week earlier but was confident they’d drop down further within a week.  I’ll find out tomorrow.  Before the chemo session – the last one this year – I’ll have another few vials of blood drawn and tested.  An hour later I should know if things are all right.  Once I do, I’ll share the news with you right away.

Under my skin

These days I’m watching my skin with more attention than ever.  You might not consider this very interesting.  If so, good for you.  Healthy skin is a slow-moving organ.  My skin is not healthy.  It’s suffering from the anti-EGFR antibody.  But like anything alive, it knows to fend for itself.

My face looked like every teenager’s worst fear, acne at full bloom, around the second session with Vectibix.  Since then, the pimples and pustules have receded completely and not even tried to make a comeback.  With all the nourishing night balm and invigorating day cream, my face looks better than in a long time.  The patches of darker pigmentation that appeared on my forehead over the last few years have all but gone.  At the very least, they are greatly smoothened.  It feels good to take care of oneself.

The cuts on the tips of my thumbs have nearly healed.  This is quite surprising, as the cuts remained stubbornly open for a long time.  Things improved when I started spreading vaseline spiked with salicylic acid on them.  This is just a correlation.  Without a negative control it’s impossible to say for sure that the unguent helped.  But I give it two thumbs up anyway because the pain is gone and I can use my thumbs normally again.

I’ve also started spreading the stuff on my big toes.  They aren’t cut, but there are dark spots next to the nails.  They’re swollen and slightly painful.  Red goo accumulates at one of the sides of the nails.  I don’t know what this means and haven’t been brave enough to ask the doctor to find out.  If they still look bad two weeks from now, I will.

My shoulder and my upper back are still – hold on to your seats, fans of alliterations – spangled with scarlet spots.  Almost all of them are completely flat.  There are no eruptions of pus when I touch or, despite knowing better, scratch them.  They don’t hurt.  I couldn’t care less.

What I do care about is this skin between the bases of my fingers.  It has got rather dry and is close to breaking.  When I disinfected my hands today, I felt a sharp pain that indicated an open wound.  It will need lots of cream to return the suppleness to these bits of skin, especially since they are constantly being stretched left and right.

A strange thing that I  first observed a few days ago is that the skin on my arms and also around my ankles seems to have aged rapidly.  When I move, it throws a thousand little ripples.  I remember seeing this on my grandmother.  All the tension is gone.  It’s not inconceivable that this has something to do with fasting, but I haven’t lost all that much weight, especially not around the ankles.

That’s all about skin today.  Anti-EGFR antibodies are not good for it.  The reason I went into this to such depth is to avoid what’s really on my mind.  The therapy on Wednesday went as well as it always does.  With my regular doctor on vacation, one of his colleagues saw me.  She was the warmest, most personable doctor I have met in the oncology department.  Without saying anything concrete, she made me feel good and positive.  When she called in the evening to ask how I had taken the therapy and whether I was doing all right, I was touched and uplifted.

I should have known better.  Doctors don’t call with good news.  At least I have never got good news on the phone.  There is a clear pattern.  The doctor continued by saying that my liver values were bad and that I should come in next week to check them again, and then maybe check the liver.  Maybe it’s got something to do with the therapy, she said.  Maybe it’s the fasting.

What she didn’t say, what she didn’t have to say, was that it might have something to do with the metastases growing in my liver.  This was immediately obvious to me.  I didn’t ask any questions because there’s no point to speculate without sufficient data.  I didn’t envision scenarios or dwell on dire possibilities, but I was a bit rattled.

The liquor cabinet will stay shut this week.

The call freaked me out enough that I broke my fast without alcohol.  This doesn’t count the little glass of red wine on Thursday night, a universally acknowledged remedy for all ailments, but today I had no wine or beer to cut through the grease of our weekly raclette.  As I write this, a Chinese green tea keeps me company.  As always, I keep hoping for the best, but my optimism is somewhat wavering.

Skin care

The good news is that my face is looking great.  The pustules have not returned.  A few little ones appear from time to time, but they’re hard to spot unless you’re really looking – and who’s looking at me that closely?  The twice daily embalming of my face with nourishing creams has definitely made my skin smoother and softer.  The skin looks and feels better than in years.  I should have started this cosmetics thing much earlier.  The red spots on my shoulders are also much less oppressive than they were a few weeks ago.  I can still see them in the mirror but my hands hardly feel anything out of the ordinary below my neck.

Is all good then?  Another therapy without serious side effects?  Not exactly.  The tips of my thumbs are lacerated with little cuts that I did not inflict on myself.  The anti-EGFR antibody causes my skin to open along the dermal ridges.  These cuts don’t seem to heal easily.  They stay open and cause pain.  It’s a good thing they’re only on my thumbs.  At least I can still type.  I wish I had a phone that unlocks by recognizing my face.

One cut on my right thumb is like a cleft, half a centimeter long and more than a millimeter wide.  There is no blood, and it seems as if a tentative healing process has started, but it’s slow going, with frequent setbacks.  The continued treatment with antibody is working against me.  My doctor said there was nothing to do.  I would have to suck it up and live with it.  The nurse was of a different opinion and recommended an unguent of vaseline spiked with salicylic acid, something a pharmacy provides against a prescription.  I started applying the ointment yesterday and might already be seeing an improvement on the tips of my thumbs.  The gash is still open, but it looks less raw.  I might be imaging or willing this.

In other news, I have set up my bicycle in the spare room again and reactivated my FulGaz subscription.  I stay (rather than go) for a ride every other night and on Saturday mornings.  The time to ride outside is definitely over.  It’s dark, cold and rather wet.

Christmas is only a month and a half away, and I have absolutely no idea of what we’re going to do or where we’re going to be, and with whom we’re going to celebrate.  The only thing that’s for sure is that we’re not going to Argentina.  I might book a week in the Black Forest, trying my luck one more time.  So far, we’ve been extremely lucky with our plans this year.

We spent a week in the Alps in February before corona became a thing.  We spent a week in Italy during the summer lull and one in Montreux in October right before Switzerland went belly up.  Maybe Christmas will be a period of respite between the second and third waves of the epidemic.

What I don’t write about at all today is the previous chemotherapy session.  It was a week ago, and there’s nothing I could write that would be new or special or interesting.  I went through it as always, and that’s that.  I know how lucky I am.