It's a wonderful life

"Remember, we are not special. Many people in the world go through things like this and things even more terrible. It is what it is. But I am grateful for the life I had. I had a great life. I enjoyed to its maximum. I made many good friends. I have a beautiful family and two amazing children. It might end a bit too soon but these were years well lived. Life is wonderful!" (Andreas). 

Andreas asked me to come here and let his blog-friends know when, physically, he was no longer among us. He left on Thursday surrounded by the love of his family. He was among the best and we miss him.

Cecilia (Flucha)

Last words

It’s amazing how fast things are happening now.  The entire year 2020 was a walk in the park, full of happiness, activities, travels, playing, working, all that.  Late last year, things took a turn for the worse.  The doctors have scrambled to keep up since then.  Now they have given up.  They’re giving me a few weeks to live.  In a way, this is reassuring.  It means that the doctors and I fought until the end.  We didn’t stop a moment too early.  I’ve done everything I could to beat the cancer.  I took all the opportunities I had.  The cancer was stronger.

My therapeutic options are exhausted now.  What this means in detail was the topic of a conversation I had yesterday with my oncologist and the head doctor of the palliative care unit.  Flucha was there as well.  I reiterated my wish to be at home as much and as long as possible.  For the moment, this is not a problem.  I can still take care of myself.  The doctors predicted it wouldn’t stay that way.  Decreasing liver function, caused by rapidly growing metastases, will give me increasing troubles, from tiredness over weakness all the way to confusion.

Flucha is willing to handle all this, but will she be able to?  Will she have the time or the strength?  Even with my mom joining us in a week, this might be difficult.  Good thing there is a care service we’ll be signed up with.  They’ll come as needed at first and then more regularly later.  It looks as if this aspect were under control.  I’m not worried about this.

I’m more worried about the progression of the disease.  What symptoms will I suffer?  How brutal will it be?  The doctor told me pain shouldn’t be an issue.  They will provide me with a range of painkillers in various strengths to keep me largely pain-free.  I’m surprised how little pain I’ve experienced up to this point.  Maybe it was the years of suffering up steep climbs on my bicycle that have stunted my perception of pain.  It looks as if this aspect were also under control.

How am I going to die?  The doctors had no answers on this.  “The cancer is in the driver’s seat”, they said, as if this explained anything.  It’s clear that the liver will play a major part as it is the organ most affected.  It could be that diminished toxin clearance will slowly poison me.  But what would this be like?  It could also be that I get another infection, some gut bacteria in the blood.  What then?  The doctors said they might decide not to treat with antibiotics at all.  “The cancer is in the driver’s seat.”  But if they won’t treat me, I wouldn’t need to go to the hospital in the first place.  I could just stay in bed when fever and the shivers hit me again, and wait what happens.  I could put myself into the driver’s seat and say, goodbye, I’m dying of sepsis now.

Whatever happens, it’s clear that there’s only one road to walk down now.  There are no forks and no intersections.  The destination is clear.  This morning, I’m feeling quite good, with enough energy for this post.  I don’t know how many more such days I’ll be enjoying, and how much more I’ll be writing.  Maybe these really are my last words.  The word count of this blog stands at just about 99,000.  I was never one to chase arbitrary goals.  If I won’t reach 100,000, it wouldn’t change a thing.

It’s been a most unexpected, crazy, terrifying and ultimately terminally frustrating journey.  It still boggles the mind how I ended up here.  Thank you for being with me throughout.

Dying man

After I went home on Saturday, things seemed normal – whatever counts as normal these days.  I felt weak and spent most of the time in bed, only appearing occasionally for some meals, to meet certain physiological needs, and to watch an episode of Sherlock on Sunday night.  When I had lived in London, I had followed Sherlock, but the last three episodes aired after I left, and I have never had the chance to catch up.  Neither the fever nor the shivers returned.  It seemed that all was good, or at least on its way toward improvement.

On Monday morning I got a call from the hospital.  They had identified the bacterium in my blood.  I needed to fight it with intravenous antibodies.  The ones I was taking, big pellets not unlike what Maria and her friend are made to swallow in Maria llena de gracia, were no good.  I went, on the bus this time and with the bag for seven days.  There was not much action in the patient storage area that I had first encountered in February, but things took long.  At least the bed was comfortable.  Eventually, I was wheeled up to the eleventh floor and then through a door ominously labeled palliative care unit.

The unit was nice, a bit more pleasant than a regular hospital ward, with pictures of flowers on the walls.  Everything was calm and relaxed.  I got a room all to myself.  The nurses are even more attentive than on other wards.  They always ask if they can do anything good for me.  This sounds almost like a piece out of paradise, but reality is graver.  I had just crossed the threshold from being a very sick patient to being a dying man.

For me, this was only a confirmation.  It didn’t shock me.  I had come to the same conclusion on Saturday.  The CT results, the morphine, the hasty release from the hospital left no room for interpretation.  Lonsurf was the last drug on the treatment list.  Now that it has failed, there’s nothing more to try.  I’m out of options.

I had been in a funk about this while I was at home, guessing the number of weeks left to me.  It was one more reason not to leave the bed.  This is all of no use, obviously.  The episode of Sherlock we watched on Sunday made some good points about this.  In The Lying Detective, John Watson comes to terms with the death of his wife who died when saving Sherlock from a bullet shot at him.  By the end of the episode, Watson accepts that “it is what it is”, and there really isn’t much more to say.

What holds true for the death of your most loved one, holds true for your own death as well.  It is what it is, and there is no reason to whine.  For me in particular, there’s no reason to whine.  I have a privileged life, better than most, with two children who are wonderful, and with a wife who always makes me strive to be, another snippet from the screen, the person she sees in me.  (I always fall short.)  What if it all ends now?

Everybody has to die.  There’s nothing to do about it.  Some people die early after short miserable lives.  Some people would probably like to be freed from their baneful existences, perilous, drab, without reward.  I feel I’m about to go too early.  I could fill many more years with exciting activities, and I could continue guiding the little ones in the right direction.  But early or late are just details.  Everybody has to die.

This was the state of mind I found myself in this morning.  Unexpectedly, it turned out a nice day.  I finished all of my meals.  I spent half the day on a chair and not in bed.  I felt better than at any point during the previous seven days or so.  Maybe there’s no point blowing the horn of doom too loudly.  After all, I’m still alive.  The cancer is eating me up from the inside, but there’s still plenty left of me.

Days in bed

One of these times when the posts weren’t flowing, and this time your premonitions were true.  It’s not looking good at all.  On Friday, I spent all day in bed.  I’m doing a proper rest day, I explained to myself.  They have them at the Tour.  For convenience’s sake, I ignored that they’re going on recovery rides on Tour de France rest days instead of lying in bed listening to the radio.  I just lay in bed, alternating between periods of mild to intermediate fever and mild cold shivers.  Something was clearly wrong.  I wasn’t ready to take action.  Maybe it’d be better the next day.

It wasn’t.  The next morning, I woke up Flucha with my shivering.  It was much worse than the day before and scared the hell out of Flucha.  She wanted to call an ambulance and send me straight to the hospital.  I wasn’t scared nearly half as much.  Two months ago when I had to go to the hospital to have the liver stent replaced, the shivers were much worse.  They nearly flung me out of bed, but eventually they stopped and were replaced by a fever.  It was then that I took the ambulance.  I expected something similar to happen this time.

Even though I didn’t join in Flucha’s panic, I could see that a trip to the hospital was on the books.  It was all too similar to the time in February when some bacteria invaded my blood.  While Flucha packed my bag for another week at the hospital, I gradually slowed shivering until I was lying peacefully.  I felt as weak as on the day before, but there was certainly no need for an ambulance.  I would have even taken the bus, but a taxi seemed an altogether more sensible compromise.

In the hospital, I was put on a rather uncomfortable bed and thoroughly examined.  One doctor noticed my somewhat tense and twisted face and asked how much pain I was suffering.  I had to admit that I wasn’t comfortable at all.  My back hurt no matter how I positioned myself on the bed.  It wasn’t pleasant at all.

The doctor wasn’t happy I took ibuprofen at home.  “This is not good for you”, she said.  “Ibuprofen attacks the mucosal layer of the stomach and stresses the kidneys.  It’s time you got a proper painkiller.”  Then she procured morphine and injected a bit with my drip.  It didn’t make me silly in the head, but it made the pain go away completely.  This felt good.

The conclusion of the first examination:  The infection markers in my blood were high.  I’ve probably got a bacterial infection that can be treated with antibiotics.  The liver values in the blood are too high.  There was no word about the why and the what to do, but a CT was lined up for later in the afternoon to see what the liver and its surroundings looked like.

The CT was something I would have wanted earlier than my oncologist who was optimistically going with three cycles of Lonsurf and then an CT, a month from now, to see how things have worked out.  It was good to do the CT today.  My body had long been sending me signals that the chemo wasn’t doing much.  When the doctor came with the results, she confirmed this.  She said bluntly, “There’s no point continuing with Lonsurf.  We see massive growth.  You get no benefit and suffer all the side effects.”

Everything happened very quickly after that.  I was put before the decision to stay in the hospital or go home that very afternoon.  This was curious.  Wouldn’t the doctor want to monitor the infection a bit more closely?  The blood cultures to identify the offending bacteria would also take a day or two.  Had they given up all hope?  The doctor handed me a prescription for oral antibiotics to be taken for ten days and for a bottle of morphine to last a lifetime.  With this I was off, first to the pharmacy, then home and straight to bed.

Two more misses

A few weeks ago in the Guardian, I encountered an article with the intriguing title The epic battle with cancer’s Death Star.  I correctly assumed the article would talk about KRAS, the protein that’s mutated in my cancer.  The subtitle suggested that “Forty years after the mutant genes that cause the deadliest cancers were discovered, drugs that target them could be approved”.  I dropped everything and basically ate my phone.

The story is well written, starting with the lucky postdoc who identified RAS as an oncogene, a protein that, when mutated, causes or at least accelerates some serious cancers.  KRAS, a variant, is mutated in 56% of all colorectal cancers.  In forty years of effort, the pharmaceutical industry has failed to develop a single drug that is specific for any of the RAS mutants.  The protein is apparently too smooth, without surface features for small molecules to dock onto.

This picture has now changed slightly.  Research has made progress.  Molecules have been identified that bind to one particular KRAS mutant where the amino acid glycine at position 12 has been replaced by a cysteine.  Amgen and Mirati Therapeutics have promising data from clinical trials.  They plan to apply for approval for their drugs.  Reading this far, my excitement had long cooled.  I have a glycine at position 13 replaced with an aspartate.  The drugs will have no relevance for me.  The situation is as bleak as it was before.

There goes the second option.  The third, which I’ve slowly been getting anxious about, is based on the molecular analysis of the liver biopsy.  The idea is to extract tumor tissue (from my liver) and sequence the DNA for common cancer mutations.  Cancer cells have impaired DNA repair processes and thus accumulate mutations as they proliferate.  Most are detrimental.  Cells with these mutations die off.  Some help the cancer grow faster or fight the immune system or invade other tissues or attract blood vessels.  Cells with these mutations will survive better, and the mutations, already known to medicine as cancer-promoting mutations, can be detected by DNA sequencing.

I had tumor tissue taken from my liver in the middle of February.  Since then, I’ve been waiting for the results.  At first, it took a while.  Then my doctor went on a three-week vacation.  When I saw him a day after his vacation, I understand that he hadn’t had the time to catch up on everything.  But he promised to check up on the results and let me know.

He called me on Friday afternoon.  “There are a few new mutations”, he said, “but nothing that would immediately suggest a therapy.”  He said he would send the results to a colleague of his at the university hospital who is more experienced with this kind of analysis but wasn’t too optimistic.  He also promised to give me the results for some digging.  Maybe there’s a clinical trial somewhere that just happens to recruit patients right now.  It wouldn’t be the first time.

One near miss

It’s an unadjudicated problem among stylists of the English language whether narrowly missing a target should be called a near miss or a near hit.  There are good reasons for either phrase.  Near miss is much more popular, but it could be argued that if the miss was near, the target was hit.  Near does, after all, modify something as coming close to happening.  Merriam Webster has an entire page on this question and the curious history behind near miss.  I’ve experienced three near misses myself recently.

Yesterday I finally called the organizers of the MEFOX study in Ulm.  Don’t worry if that doesn’t ring a bell.  The topic featured early in my blog.  Here’s a quick summary:  There is scientific evidence that the common opioid painkiller methadone might have a role to play in chemotherapy.  Papers describing results in mice and human cells were published years ago but never followed up with safety and efficacy studies.

In 2019, the University of Ulm where the initial research had been conducted obtained funding for a clinical study, specifically targeted towards colon cancer patients on their last legs.  It was supported to start around this time last year.  Patients could enroll only if they had climbed down the ladder of available therapeutic options in its entirety.  I was doing way too good back then to qualify.

Things are different now.  I’m at the bottom rung.  Below me is the abyss of unspeakable blackness.  Meanwhile, the expected starting date of the trial is now in the middle of April of this year.  Yesterday, I called and was happy to hear that (1) they are still recruiting patients and (2) I qualify, at first glance anyway.  I sent them a copy of my case history by email.

The trial would be quite a trial.  Ulm is around three to four hours away, depending on whether you drive or take the train.  Treatment would take one day every two weeks, with CT scans and blood work in between.  Methadone is self-applied, as drops, with a pipette, over a few days.  Naively, I thought I could just travel a day earlier and spend the night in a hotel.  This is impossible in Germany where all hospitality is currently closed.  With case numbers rising sharply, this is not bound to change either.

Then there’s the question of paying for the treatment.  With no big pharma supporting the trial, I’d need my Swiss health insurance to release money for treatment abroad.  They’re already getting nervous when you want to leave the kanton.  Many questions to answer, but I was getting excited.  An option is better than no option.  Now it turns out there’s no option after all.  Today, the leading physician wrote to say that I don’t qualify after all because of my allergy to oxaliplatin, a drug that will be part of the treatment.  Too much risk for them, I guess.  No hit on target for me.

To be continued.

Reality check

Last week wasn’t a good one.  The previous post makes this quite clear.  I worried myself into a hole that threatened to swallow me.  How I was feeling didn’t help but my state of mind was much more fundamental in this.  I don’t think I’m going to die this week or next.  There’s still too much life inside me for that.  On Sunday afternoon I grabbed myself by the collar of the shirt I was wearing and yanked myself from bed.  There’s nothing to be gained from wallowing in self-pity all day.

The jolt of energy kept me going for the rest of the afternoon, through dinner and through the late evening.  I had my afternoon tea, played with the children until temporary exhaustion (mine, not theirs) and, at night, typed up the previous post.  It had been in my head and on paper for days already, just needed copying and shaping up.  Then it got the Friday timestamp because it reflected reality on Friday.  I simply had no energy for it earlier.

Eating continues to be difficult for the most part.  I just don’t manage to put enough inside me.  Sometimes I chew and chew and realize that normally, swallowing is automatic.  For me, it is oftentimes not.  During many meals I must make an effort to swallow, to get this mash down into my digestive system.  Sometimes I wonder what sustains me at all.  Then I look at my arms and legs and am frightened.  They have shriveled to little more than skin and bones.  The 400-calorie drink I consume each night cannot compensate for what I don’t eat.

On Sunday night I took an ibuprofen a couple of hours before going to bed.  I expected my back to hurt and wanted to see if I could avoid or at least mitigate the issue of sweating in bed.  I failed.  I could feel how I was getting hotter as the night progressed.  When I went to bed, everything appeared to have reverted to normal, but at some point I awoke in my usual pool of sweat, pyjamas dripping wet.  Thank goodness for the guest room with its extra bed.

This morning, I went to see my regular doctor for the first time in four weeks.  He had been on vacation.  It’s not that the substitute hadn’t done a good job, but the doctor who’s familiar with your case is a better person to discuss the important questions with.  Here’s what we talked about.

• I had been concerned about the cancer growing despite the current chemotherapy.  My doctor waved a quick CT off.  “We need more time to get a clear picture”, he said.  “Let’s do two or better three months of therapy.”  I liked the optimism in that.
• What about my blood?  My hematocrit value hovers just above 30.  Around 45 is normal.  I had 20 when I was diagnosed with cancer.  Should I be getting iron?  Maybe vitamin B12 again?  “No way”, he said.  “Maybe EPO or a blood transfusion, but it’s not really a big deal”.  What about the rest of it?  My heart races at 100, my lungs work overtime.  “You are more sick than you were half a year ago”, was his sobering reply.
• What about the sweating after taking ibuprofen.  “This can happen”, he said and prescribed me a different painkiller to try.
• Are the results of the mutation analysis ready?  This is the only avenue for unexplored therapies.  He checked his computer.  No, there was no information.  Here I got a bit cross.  It’s been six weeks since the stern radiologist had punctured my skin and retrieved two tissue samples from my lung.  “This is important”, I reminded him.  “It’s the only chance I have left.”  He promised he would have the results by next week.

So it’s really just a question of carrying on, with stubborn insistence in my body and hope in my heart.  There’s nothing else to do.  Pain will come and go, good days will alternate with bad ones, suffering will make way for moments of joy.  It’s all within expectations.  To avoid (or justify) another collapse like last week I asked the doctor explicitly, “Do you think I will die within the next two weeks?”  “I don’t think so,” he said.  It’s an opinion to build on.