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.

No more fun

After a wonderful Tuesday, the week progressed in a terrifying way.  On Wednesday and Thursday, I was out of energy again and confined to the sofa or the bed for long stretches of the day.  I tried to get some work done but my brain wasn’t helping much.  On Wednesday night, I had to give a presentation at a virtual conference organized by a large facility at the East coast of the US.  Luckily it was only ten minutes.  I did all right.  Unfortunately, the conference was so interesting that I stayed up much longer than I had planned listening to the talks.

I’ve spoken before about the feeling of being out of energy.  It seems to me that this time is different.  It’s not just out of energy.  I feel almost lifeless.  I lie in bed wondering how (and for how long) things will continue.  I don’t feel strong pain, but there’s diffuse pain in my lower back that certainly contributes to how poorly I sleep at night.  I’ve tried fighting back with painkillers but paracetamol is no good, and ibuprofen makes me sweat like crazy when I pop the pill in the middle of the night.

I wrote in the previous post that I assumed the sweating had to do with the immune system finally doing its job and getting all pumped after the ovid shot.  This hypothesis fell apart when essentially the same thing happened the next couple of nights.  I pop an ibuprofen.  The pain goes away quickly.  I fall asleep happily, only to awake in a pool of sweat a few hours later.  Flucha found an explanation only about dilated blood vessels and such, but to me it makes little sense that a drug that’s supposed to lower your temperature makes you sweat like a sauna.

Besides the back pain, there’s pain in my abdominal region.  It’s much more disturbing though it’s not very strong and doesn’t bother me much physically.  It’s where the cancer would cause pain if it were growing.  I am currently on chemotherapy, though I’m not taking any pills at the moment.  I’m in the second recovery week of the first Lonsurf cycle.  Has the drug helped at all?  It’s easy to think it hasn’t.  There are scratches on my left side, halfway up my torso.  There are bites on my right side and sharp claws making a mess with my insides in between.  It’s as if there was a rodent living inside me.  In all likelihood, it’s the cancer, and it’s making itself felt.

I don’t know this, of course.  It would take a CT to see what’s really going on.  But when I listen inside me, what I hear doesn’t give me much room for interpretation.  It fills me with negativity.  The current therapy is the last one in the books.  What if it doesn’t work?  What are the steps for me after that?  Do I just wait and watch myself being eaten from the inside?  What happens when the liver fails?

I walked to town today to pick up a prescription.  This little walk, not even four thousand steps, was already too much for me.  The miserable weather didn’t help, but it wasn’t the cause either.  I had experienced something similar when my lung was full of water.  I had to stop and rest at the train station before I could make my way back.  This time is different.  I’m still short of breath and wouldn’t want to climb 200 steps, but stairs were not a particular problem.  Everything was a problem.  I simply didn’t have the power.  I was reaching my limits of performance.  At the pharmacy I was grabbing the counter like an anchor to hold myself upright and give me some energy for the way back.

Life is draining from me.  This spring (or summer, if I make it that far), I won’t be pulling a trailer with two kids along the river in search of a picnic spot or a place to swim.  I won’t even be riding behind Flucha doing the pulling, though the speed would be much more moderate, laughable even for my former self.  I’m not my former self anymore.

My heart rate used to be in the forties when I was in the shape of my life.  My rather sedentary lifestyle in London had taken this up to 60, which is normal.  When I was last in the hospital, for the bacterial infection in my bloodstream, I clocked in at nearly 90, resting in bed.  The other day, I measured more than a 100.  What is my heart racing to achieve?  How can I live like this?

Life is about enjoyment, about having good times, about having fun.  I’ve hardly had a drop of alcohol since before Christmas.  I drink very little coffee.  It’s not that these things make me feel worse.  They just don’t give me any pleasure anymore.  I don’t enjoy the taste anymore.  The moment to take up cigars has definitely passed.  Life is no fun anymore.

Back from the dead

After the covid shot on Friday, I had expected life to continue just so.  Instead, it seemed to end.  I spent Saturday, Sunday and Monday largely incapacitated, entirely out of energy and in increasing discomfort.  I was lying haplessly on the sofa and in bed most of the time.  I thought the end was nigh.

Since I had stitches and occasional other pain from where lung and liver are, I didn’t blame any of what bothered me on the vaccine.  I had read that I should expect a bit of fever, maybe chills, consistent with the immune system working hard to turn a few molecules of RNA into antibodies against the coronavirus spike protein.  There was a bit of that but not much.  With pain coming from lung and liver, my explanation of why I felt so shitty was that the current chemotherapy wasn’t working, and that the cancer was growing out of control.  Not a nice thing to consider.

Last night, I woke up in the middle of the night.  This has become normal recently.  I wake up, turn from one side to the other, and go back to sleep.  Sometimes I get up.  This time, I did.  I had a bit of water and went back to bed, but I couldn’t fall back asleep.  My back hurt in a way that I couldn’t suppress no matter how I positioned myself in bed.  Getting increasingly frustrated with my body, I did something I normally don’t do.  I popped an ibuprofen.

Whether because of the drug or the placebo effect, the pain dissipated quickly.  I found comfort and fell asleep.  It wasn’t the most restful night, though.  From time to time, I half awoke, realizing each time that I was sweating quite a lot, and dozing back off.  In the morning when I got up, I realized that my pyjamas were completely wet, as if I had played indoor football for an hour.  The sheet and the pillowcase were like sponges after a bath.  The most curious thing was I was feeling great.

It was as if I had been reborn, as if the previous three days hadn’t happened.  I was fresh like a daisy, ready for a great day.  The difference to the weekend was mind-blowing.  On Sunday, I refused to paint Easter eggs with the children because I didn’t think I could hold myself upright on a chair long enough.  This morning I could have gone to the forest to collect the twigs from which to hang the eggs.  Maybe it was the vaccination after all that had taken me down.

First shot

Yesterday I got my first covid shot.  It came as a bit of a surprise.  I had registered online three weeks earlier but didn’t expect to be called until April.  Switzerland is a mess with the vaccinations.  Everything happens extremely slowly.  Less than 10 per cent of the population have been vaccinated.  Some in the highest-priority group are still waiting.

I got a text message on Thursday with an appointment on Friday.  I took my doctor’s not confirming my risk-group status and my yellow vaccination passport.  It would make sense, it seemed to me, to enter the vaccination into this little booklet, recognized as it is internationally and underwritten by the World Health Organization.

The Swiss health system has other ideas.  My vaccination passport was ignored.  Instead, I got a simple piece of paper, signed by a person of little leverage, that confirmed that I had been vaccinated.  As proof of its official nature, the piece of paper carried the logo of the Baden hospital where I had received the shot.

How far does the authority of this document reach?  If I tried to travel to Japan or China, would I be welcomed as a healthy and safe visitor, or would I be laughed out of the country without having been allowed to enter it in the first place?  It came to me that it’s ridiculous that the WHO doesn’t issue an app that serves as an official vaccination record.  All the various national discussions about vaccination passports would be moot, and people would have something of wide, maybe global acceptance.  Or maybe Bill Gates should have added little RFID chips to all the vaccination doses.  Then I would just need to touch a sensor at the airport, and all would be good.

So far I don’t feel any side effects from the vaccine.  My harm hurts a bit around the point where the needle went in, but this is minimal.  The cancer has a much graver effect on my well-being.  Even though I’m at the end of the first recovery week, my abdomen hurts from constant pressure, my belly is not too enthusiastic about food, and I am horribly tired most days.  The second cycle of the Lonsurf therapy will start in a week.  When I’m recovering from that, after Easter, I’ll get my second covid shot.

Out of nowhere

It’s Friday already.  The week is almost over.  It was my second week on trifluridine.  What a week it was.  No comparison at all with the week before.  I felt much better throughout.  I didn’t need to puke.  I didn’t spend entire days lying in bed as if I were already half dead.  I got tired by the evenings, but that seems to be the new normal now.

This was all rather lucky because Thursday was a special day.  About a month ago, Flucha floated the idea of getting married.  There was not much of a reason.  We’ve been happily living in sin for many years.  No obvious motive why we would do it now.  Yet I quickly agreed.  I don’t believe in marriage but saw the wisdom of it.  Who knows how things will develop.  Being married makes our family stronger and more secure, and will make everything else simpler and more straightforward.

Getting married in times of corona is a little different.  Currently, Switzerland allows only up to five people to hang out together indoors.  With my mom and the two mandatory witnesses, we had already reached the limit.  My father wanted to come join us despite staying home throughout the pandemic, but we had to refuse.  There was no reason to think bigger.  Instead, we thought small, as small as possible.

The smallest possible wedding entailed a couple, a city official, two witnesses, a short speech, two vows, an exchange of two rings, and a kiss.  It was over within fifteen minutes.  Flucha had put some effort into her outfit and looked truly special, like an extra from a movie depicting the glamorous 1920s.  It was easy to see a bride in her.  I had spent a day rummaging through my clothes to find some without holes or excessive scuff marks.  I think I looked quite presentable as well, though maybe not exactly like a bridegroom.

The happy couple, tightly cropped.

After the non-ceremony, held in a hall that used to be the chapel of a medieval monastery, we had a little reception at home.  Flucha had purchased Luxemburgerli for the occasion, I contributed a Crémant d’Alsace, and mom had decorated everything.  My sister had come up with a big surprise.  She had booked an alphorn player to come down from Lucerne.  He played a few songs beneath our balcony, entertaining the neighbors and surprising passers-by who couldn’t see him.

Now, with a thin gold band around my ring finger, life continues as before.  The disease is making itself known again.  Today, I feel much worse than the days before.  It seems as if the drugs have accumulated through the week.  Maybe subconsciously I pushed myself harder than I should have the first four days.  In any case, today I am deadly exhausted, at one point falling asleep on the sofa while listening to the Toten Hosen.  Tonight I will take the last dose and then enjoy 16 days of recovery.

Short and sweet

The recovery period is over.  It was quite remarkable.  I felt much better on Saturday already.  I had the distinct feeling of getting better as I was lying in bed on Friday night, but that can’t possibly be true.  Sunday was also good.  No pain from my belly.  I ate almost normally though not normal amounts.  I still lacked energy and spent good time on the sofa or in bed, but I got out to go on little walks.  My stomach somehow went back to feeling continuously full, even when I’m hungry, but my body has learned to handle this better than in January.  Conclusion:  The weekend was ok, much better than expected.

Yesterday, I went back on Lonsurf.  The doctor’s words didn’t offer clear guidance.  Did I feel all right, or did I not?  I was somewhere in between.  There was room for improvement, but maybe that’s the new normal.  I decided to continue with the full dosage, as prescribed.  After all, the main point, easily forgotten among all the feel-good blah blah, is beating the cancer.

Today I went up to the hospital to see, wait, no, not my doctor but a substitute.  My doctor is gone for three weeks, vacation.  He seems to take quite a lot of time off.  He was gone around Christmas as well.  But he’s also often in the hospital on weekends and works way past dark.  Good thing that he can compensate the hours that are not in his contract and return fresh, alert and on top of his game.

The substitute doctor did the same things the regular doctor does, but there were some differences.  Sounding out my lungs with her stethoscope, she claimed that they sounded much better than she would have expected from the state of my health as documented on her computer.  She then asked me to breathe in and out deeply.  Today was the first time in months I did this without coughing.  These are the little things that can brighten my day and keep me going.

Side effects

In this blog I have not talked about side effects much because I’ve not experienced much of them.  The first rounds of therapy were so easy.  I got my infusions in the hospital, got a bit tired in the process, went home with the bottle pump and fell asleep for a few hours until Flucha and the children got home.  After that, I was largely restored and feeling fine.  This lasted more than a year.

One of the antibodies made spots explode on my face and all over my back and another brought thick calluses to the heels of my feet.  There was the increased sensitivity to the cold caused by oxaliplatin and the neuropathy that developed in my fingers and toes with time.  There might have been more.  It’s all in this blog.  None of this was debilitating.

Things changed when I started taking pills just after Christmas.  The first, Stivarga, massively messed with my stomach and digestion.  I could hardly eat and I didn’t enjoy it one bit when I did.  I was dead tired on quite a few days.  My doctor asked me to reduce the dosage.  The therapy I started on Monday is even more brutal.  The first day was easy enough.  We went to Bern for administrative purposes and had a good day walking around town.  The bears were unfortunately still hibernating.  So were the cafés.

The next few days got progressively worse.  I was not just tired but utterly out of energy, felt pain radiating out to my entire body from the belly region, ate less and less, and had the hardest time finding any sort of comfort.  I walked haltingly because of the pain from my belly.  I couldn’t sit in front of my computer for any length of time doing something as simple as responding to emails.  I felt as if I were to fall off my chair at any moment.  On Thursday and Friday, I didn't even leave the house.  Sometimes even the bed wouldn’t do because my back hurt too much to lie comfortably.  I discovered the power of multiple pillows.  Even so, the nights were marred by frequent waking up, readjusting and hoping my exhaustion would be stronger than the pain.

On Thursday night, I puked dinner out in a number of powerful gushes.  This was like crossing into territory I didn’t want to inhabit for any length of time.  The next morning, after I had bravely or foolhardily taken the next dose of the drug, I called my doctor.  He recommended skipping that evening’s dose.  The drug has a curious schedule of administration.  Five days with pills in the morning and in the evening, then a break of two days, then another five days as at the beginning.  Sixteen days of rest brought the cycle of four weeks to a close.  The dose I was asked to skip marked the end of the first stretch of five days.

“See how you feel after the weekend”, the two-day recovery period, the doctor said.  “If things are back to normal, continue as before.  If you still feel bad, go from three pills to two.”  I’m not happy to reduce the dosage and with it the slim hope of beneficial effects but I don’t really see an alternative.  It is of course utterly unrealistic to recover in two days.  If it took only two days to recover from five days of the drug, there wouldn’t be a break of 16 days after the second period of five days.  I live in apprehension.

Enjoy life

It’s been two weeks since I last wrote.  I’ve already got emails full of concern for my well-being.  Thank you for these.  I’m doing fine.  Things are roughly as they were when I last wrote, after leaving the hospital two weeks ago.  I’m worse than last year but much better than in January.  I eat with sufficient appetite, and I have enough energy to get me through most of the day.

The reason I haven’t written is that not much has happened – and what has happened has kept me from writing.  Five days ago, my mom came over for a visit, just days after the German state she lives in was struck off the Swiss high-risk list.  As soon as she could visit us without having to quarantine for two weeks, she hopped on the train.  The children are crazy with happiness and I enjoy the evenings with her, but it means I have much less time to write.

Last Monday, I went to see my oncologist.  This would normally merit a post, but we didn’t talk about much.  I forgot to ask for what I was really interested in, a detailed discussion of the CT scan taken late in January.  What I asked for, the results of the sequencing of the live metastasis, hadn’t arrived.  Still, I didn’t go home empty-handed.  My doctor gave me a prescription for yet another chemotherapeutic drug.  He had decided Stivarga wasn’t worth the bother.

Trifluridine, the new drug, which is also known by its brand name of Lonsurf, is, depending on how you count, the fourth or fifth drug I’m on.  That I was taken off Stivarga kind of obviates the need to discuss the CT.  Things have gotten worse.  Still, it would be nice to know how bad it is.  Trifluridine is similar in its action to the 5-fluorouracil I took at the beginning, first with great hope, then also with fasting.  The drug didn’t stop the cancer.  What are the chances Lonsurf will be better?

It doesn’t matter.  Lonsurf is the last drug on the list the doctors had compiled for me at the beginning of my battle.  Beyond it lies darkness – unless the sequencing comes back with a glimmer of hope, a mutation that will serve as a target for an untried therapy.  Again, I don’t know how likely this is, but it’s the only thing that keeps me going.

I’m happy to repeat that I’m doing all right – though I’m clearly sick.  I don’t know whether I’ll be able to ride my bicycle to work when it gets warmer.  Maybe my breath will be too short for the gentle climb each morning.  I will surely not be pulling the children along the river in a trailer this spring - unless I buy an electric bicycle.  I cannot run either.  The impact is more than my belly region can take.  Even sledding down a bumpy slope was a little bit too much.  I get tired quickly.  My belly always feels odd.  But I’m alive, and I have enough power inside me to enjoy life.

Two sides

After eight days away, I slept in my own bed for the first time again last night.  I didn’t sleep too well.  I woke up a few times and struggled to find a position that was comfortable, but it was so much better than in the hospital.  No tubing connected to my chest, no nurses coming in at ungodly hours to connect an antibiotic infusion or take vitals before anyone is ready to get up.  I’m happy to be back home.

I left the hospital shortly before lunchtime yesterday.  Lunch had in fact already been served, but I sent it back because I preferred to eat at home.  I didn’t feel too great when I left.  I was weak, far from energetic and wondering how the journey home would turn out.  I hadn’t moved too much over the last eight days.

A bus brought me to the center of town where I filled two prescriptions that I’d need later that day.  One was for an oral antibiotic that would extend by another three days the therapy I had started in the hospital.  The pills are as large as candies but go down without problems, as I learned in the morning when I took the first one in the hospital.  The second drug acts against nausea.

I’ve never suffered from nausea during my fight against cancer.  The nurse who gave me the pills couldn’t quite explain why I needed to take them.  I took the pill a few times, out of trust in the medical profession but then started to discard them like a rebellious inmate of a mental institution.  On the second to last day of my stay, the doctor explained that the drug acts by stimulating gut activity.  This might give my stretched belly some relief.  Now I’m back to taking it again.

In the puffy jacket I had put on when I got the chills last Thursday and had worn to the hospital, I was now walking home, slowly but steadily.  With the temperature in double digits and the sun shining, the jacket was quite a few puffs too warm.  Walking didn’t seem the right thing to do, but I had to press on.  Every step I took was an effort.  And yet, I could feel my energy returning, bit by bit, with every step.  Being outside felt good, breathing fresh air, having the sun pull sweat from my skin.  I arrived home exhausted but revitalized, a different person than had left the hospital.

This is when I realized the main predicament of hospitals.  They’re great places to help patients get better.  The nurses and carers are more than just professionally alert to the patients.  Most work passionately.  The doctors do their best, never mind the hour.  I got the treatments I needed, quickly and expertly.  The nurses continued the care and made sure to meet all my needs.  “Is there anything else I can do for you?”, was the question I heard more often.  This is why most people leave the hospital in a better shape than they enter it in.

At the same time, staying in the hospital is bad for patients.  Germs, especially of the antibiotic-resistant kind, make infections a serious danger.  Patients lie in their beds, restricted to their rooms, for days.  The air is stale, the sun distant.  Patients don’t move much.  They slowly enter a resting state of lethargy and tiredness.  Muscles shrivel.  Stay in hospital beyond what’s medically necessary, and you’re bound to get worse.

I tried to keep myself alive while in hospital.  I walked up and down the long corridor down the building.  One lap added up to slightly more than 400 steps.  Making this add up to a respectable number takes more stamina than I had.  Even so, my sluggish shuffling, IV pole in hand, wouldn’t exactly have amounted to exercise.  The last two days, when the procedures were done and I had finished my book, I spent my time counting the hours and dreading the arrival of the next meal.  With soup, salad, main course and dessert, the food was quite good, but my stomach couldn’t take it, and it seemed as if my digestion had also entered a resting state.

Yesterday morning, when the doctor gave me the option of leaving or staying for another day to exclude anything bad related to the slightly elevated temperature I had had the night before, there was one obviously correct choice.  Today, I can already feel the difference.  I might not be much more active than before, but my body has woken up.  Eating is still a bit of a struggle, but much less so, and I don’t dread it anymore.  I don’t sleep during the day.  I climb stairs.  I go outside.  I’ve risen from the hospital.

Three more days

Three days is a lot, especially if you have to spend them in a hospital.  When the doctors told me yesterday that I wouldn’t be home until Friday,  I wasn't too happy at first.  I understood their point.  The antibiotics treatment has to run its seven-day course before I can leave.  But three days is a lot.  On the other hand, having a relatively certain release date is much better than living day to day, anxiously asking every morning, “May I leave today?”

It won’t be three days of complete inaction.  Yesterday morning, the doctors agreed to drain the liquid from my abdomen.  This is a procedure not unlike what was done to my lung, and I’m afraid the result will be the same.  The liquid will go but quickly return.  Even so, it should give me temporary relief and the chance to eat as much as I need to keep my weight.  And maybe the liquid will stay away.

Right after the procedure, I could feel that my belly was much less tense than before.  This is what I had hoped for, and it filled me with joy.  This procedure had been the right thing to do.  At dinnertime, much of my joy had already dissipated.  I had similar problems eating as before.  I didn’t want to eat and couldn’t fit much in.  The mere thought of eating now puts me in a bad mood.  I don’t feel good when I eat.  I’d prefer not to eat.

Not eating is obviously not an option.  I need to keep my weight.  If I waste away, the result is obvious.  This morning, a nutritionist stopped by to discuss ways of supplementing my meals to get enough calories even when I don’t eat much.  One option are energy-rich shakes that can be consumed between and after meals.  I’m already doing something similar at home with protein-rich milk drinks from the grocery store.  The nutritionist signed me up to something even richer, to be delivered to my door once a month.

This was only the second most exciting thing to happen today.  Yesterday when I discussed various aspects of my disease with my oncologist, we got to the topic of comprehensive mutational analysis.  I know the main mutation of my cancer, G13D in KRAS, but it’s entirely possible that additional mutations have accumulated during the billions of cell divisions that the cancer cells have undergone in their relentless proliferation.  To identify them, one takes a bit of cancerous tissue, extracts the DNA and sequences a large number of cancer-related genes.  The identified mutations might indicate new avenues for treatment.  As a side note:  Among those new avenues won’t be the injection of mitomycin C straight into the liver, which I had floated after Flucha’s discussion.  The oncologist didn’t think this was in any way sensible.

Getting the tissue for sequencing takes a biopsy.  In my case, the liver with its plentiful metastases was an obvious candidate.  The procedure took place this morning, after I had received, once again and much to my surprise, no breakfast.  A few hours later, I was wheeled down to the ultrasound department on the first floor.

I was a bit afraid the doctor would just take tissue from the liver, but he had things under control.  With the ultrasound, he mapped the area and identified a place with few blood vessels and good access to a metastasis.  Then everything was made sterile, including the ultrasound head and the cable, which were slipped into what looked like a condom fit for a horse.  Thus prepared, the procedure began.

An assistant held the ultrasound head to guide the doctor’s needle.  The doctor turned towards me, a syringe with a 8-cm-long needle in his hand.  For the local anesthetics, he said.  I almost jumped off the bed, but in the end it wasn’t half as bad.  He anesthetized the skin and then the protective layer surrounding the liver.  There was no pain beyond the initial injection.  The doctor took another needle, even longer and thicker, inserted it into my numb skin and further into the liver and, with a loud snap, extracted tissue exactly from where he had planned.  He repeated the procedure and then showed me two little worms 1 mm in diameter and 2 cm in length floating in a small plastic vial.  Enough for a few sequencing runs.

None of what I’ve undergone during this stay in the hospital has been painful.  But it wasn’t pleasant, and the unpleasantness adds up.  This afternoon, I lay on my bed in a rather sad shape.  I tried to write at the table for a while, but the bed was the more appealing proposition.  Good thing that there are no procedures scheduled for tomorrow, and that I can go home on Friday.

Slipping downward

My previous stays in the hospital were relatively pleasant.  I read, I wrote, I worked a little.  I could feel how I was getting better every day.  It was always a positive experience.  This time is different.  I’m lethargic.  I lounge on my bed with nothing to do.  It seems I felt better on Saturday than I feel today.  My overall state is poor.  Not even the nice two-bed room with private shower can make up for that.

This is weighing on me.  I’m not sure how long I can keep my optimism.  How long will I be in this fight with the conviction that I’m standing an honest chance?  Even the most stubborn stubbornness runs out eventually.  How long can I keep fighting when I’m letting myself slip as I’m doing right now at the hospital?  I don’t want to give up.  There’s no point in this.  But if everything that’s happening to me points into the same direction, it might be time to accept the inevitable.

I haven’t read any scientific papers on cancer in many months.  I haven’t explored or suggested to my doctor alternative, maybe experimental or unproven, therapies.  I’ve become passive like a sheep on the way to the slaughter.  This is also how I feel.  I need a boost of energy, something to push me back into gear.

Flucha has stepped into this void with some vigor.  She has always made little suggestions, but the liquid in the abdomen theory was what really pulled her in.  Today she was all but proven right.  I had an ultrasound that showed liquid around the intestines.  The doctor didn’t speculate, but I can see how this would restrict the amount of food my stomach can handle.

Encouraged by this success, Flucha started digging in the medical literature (or rather databases thereof) and found a paper that describes the application of mitomycin C straight into the liver.  This is not an accepted or approved therapy but, according to the paper, is something that has worked when nothing else seems to work.  As the liver seems to be my biggest problem now, this might be worth a shot.

What I’m much more concerned with is that I haven’t taken my regular chemo pills in four days.  I don’t want to let the cancer loose.  It does enough damage already when it is contained by drugs.  But there is still no word on my infection and on how long I will need to keep taking antibiotics, currently infused at eight-hour intervals.  The antibiotics preclude chemotherapy.  You can imagine that I really want to get out of this hospital.

The real problem

It’s Saturday now.  I’ve just been moved from the observation room.  It wasn’t most comfortable to sleep with all those wires and cables attached to my body, but it wasn’t too bad either.  Nurses entered periodically to do what they had to do to us three patients, and the blood pressure monitor came noisily alive every hour, but I hadn’t done much beside doze the day before.  I don’t feel sleep-deprived or tired.

The intervention took place as planned on Friday morning.  Everything went all right.  The doctor didn’t see anything obviously wrong with the stent.  It was still in its place and open.  But there must have been a blockage.  He swapped the original plastic stent for one made of metal, longer and more stable.  It covers most of the gall duct now and will hopefully preclude further emergencies.

The intervention was done under full anesthesia.  In addition, I got a number of drugs to suppress an allergic reaction against iodine, which was used as a contrast agent.  As a result of this, I spent the hours after the intervention up until the night in a bit of a haze.  I couldn’t even be bothered to watch anything.  The only thing that kept me awake – and painfully so – was hunger.  Since a small breakfast on Thursday, I hadn’t eaten anything.  You know that I don’t mind fasting when I control it.  It’s a different story when it’s imposed on me.

In the early afternoon, I hadn’t eaten for 30 hours and hadn’t had a sip of water for 24.  With the saline infusions running at a good pace, there was no risk of dehydration, but they’re not really effective against a dry mouth.  At three o’clock, as promised, I got my first meal.  It was nothing much, just bits and pieces, but it added up to nearly 700 calories and got me going until dinner.  Dinner was substantial but light, exactly the right thing for my stomach.  I was feeling better afterwards.

This morning the doctor reiterated how well the procedure had gone, and that I’m making good progress fighting the infection.  It’s easy to be overcome by feelings of relief, optimism or happiness at this point.  Things are going well.  But they’re not.  The intervention was pure maintenance, keeping my body from falling apart.  It was peripheral to my disease.  It didn’t do anything to stop or slow the growth of the cancer.  I can’t even take my chemo pills at the moment.

I have long learned that the hospital is always a source of bad news.  It wasn’t any different this time.  The CT showed that the metastasis in the liver has grown further.  Something to discuss with my oncologist the next time I see him (on Thursday?), but it’s not good.  In addition, the endoscopist thought something was pressing against the colon.  Nothing dramatic, he said, but surely not good news either.  The more the tumors grow, the more they’ll restrict the organs that are in their way.  This is the real problem, and it’s not going away.

Expect the unexpected

This blog has now reached a certain maturity and with it stability.  I post updates on Thursdays after the weekly visit to my doctor told me a bit more about myself and the progression of my disease.  This regularity means that nothing bad has happened in the intervening days.  No sudden deterioration of my health and no visits to the emergency department.  This is what I thought when I optimistically prewrote this first paragraph on Wednesday night.

This week was a very good one.  On Monday, for no good reason that I can figure out, I woke up feeling stronger and better than at any time since before Christmas.  I ate more easily and had plenty of energy to take the boy to childcare.  I wasn’t back to where I was last year, but it was a huge improvement to the weeks before.  I was very happy.

The weekend had been all right, without suffering but also without feeling particularly well.  I had the same issues with my stomach and my digestion that I’ve had for a while.  Flucha kept urging me to go to the emergency room and get a CT.  I understand that she wants to help (and also know about her theory that I have water in my abdomen), but if my state doesn’t change, it’s not really an emergency, is it?  I promised I’d call the oncologist on Monday to request a CT, but in the end that didn’t turn out to be necessary because I felt so much better on Monday.

All changed on Thursday.  I already didn’t feel too good in the morning.  With the doctor’s appointment coming up in a few hours, I logged a half day of sick leave at work.  I took the boy to childcare.  When I returned, I rested a bit before wanting to take the shower that makes a visit to the doctor more pleasant for both sides.  On the sofa in my office, I got colder and colder until I started shivering.  I put on my puffy jacket.  My body got warm.  The shivering continued.  It was like nothing I had experienced before.  I was shaking everywhere.  It was impossible to hold still.  I was afraid to bite my tongue off.  Finally I called the hospital to call off my appointment.  I could hardly make myself understood.

My oncologist got back to me, urging me to report to the emergency ward.  Something was seriously wrong.  You just don’t shake like that.  Taking the bus wasn’t really an option.  He asked me to call an ambulance.  It took me another ten minutes to find the strength to make that call.  Again, communication was difficult.  I was shaking so much, I was nearly impossible to understand.  In the end, we figured it out.  I put the phone down and not too much later, the shaking ended.  The episode had lasted forty minutes.

The ambulance arrived soon after and took me up to the hospital.  In the emergency ward, I was put in a bed right away.  Doctors hooked me up to machines and did many tests.  My temperature was elevated.  They took blood from two different parts of my body.  A bacterial infection was the prime suspect, bacteria that had invaded my bloodstream.  Before knowing the results of the blood tests, the doctors already gave me antibiotics.  Reading and writing about this now, it sounds as if the situation was not without its dangers.

I was later taken to a CT.  This didn’t show anything out of the ordinary.  The stent in the gall duct seemed in place, though the blood tests had by now shown elevated bile values.  There must have been a temporary block.  This might have caused bacteria to enter the bloodstream.  After eight hours in the emergency ward, I was informed that I’d have another endoscopic procedure the next day to check in greater detail on the stent and to fix anything that might be wrong.

I will spend the night in an observation ward, my blood pressure taken every hour and my heart rate monitored through five electrodes on my chest and corresponding cables running to a machine by my bed.  A clamp on one of my fingers makes sure my blood oxygen level is known to the nurses.  I’ve got a few more doses of antibiotics.  Above my bed is a camera.  It feels a bit dramatic but is probably all for the best.

Getting better

Today is the last day of my recovery period.  It was a remarkable week.  On Friday and Saturday, I was a total wreck.  But then it got a little better every day.  Yesterday and today, I was largely back to normal.  Normal, in these strange times, means that I have aches and pains, and that I don’t run at full speed.  In particular, it means that my stomach and my digestion are off.  I have a hard time ingesting enough food, and it’s a struggle to digest it.  My stomach is a big, hard metal ball that just sits in my abdomen uncomfortably, day and night.

Flucha was getting a bit concerned about this and started to find out more.  She is an active member of the Academy of Google Docs.  She searches for symptoms online, gleans options from websites and puzzles together diagnoses.  Sometimes she’s right with this and sometimes she’s not.  Her verdict on my belly:  Ascites.  This is not something I had heard of before, but the explanation was simple.  Just as a tumor had attracted liquid into the pleural sac that compressed my lung and made breathing almost impossible, a different tumor had now invited liquid into my abdominal space.  Ascites is the condition of having excessive abdominal liquid.

Liquid in the abdomen would press against the stomach and decrease the amount of space available to it.  The body normally compensates by growing a proper beer belly.  I certainly don’t have that.  But I still have fairly strong abdominal muscles.  Maybe they keep the belly expansion in check.  Could this explain all my troubles?  A stomach with less space is filled more quickly.  Digestion might suffer.  Even shortness of breath, something I’m still struggling with, is among the symptoms, said Google Doc Flucha.  It sounded quite convincing to me.

The day after her diagnosis, I called my doctor.  I wanted to run the idea by him and give him time to prepare should action need to be taken during our next appointment.  I didn’t need to have bothered.  He was instantly dismissive.  “This is impossible”, he said.  “One would see from your belly.”  He continued to blame the side effects, even though I hadn’t taken the drugs in four days.

Today I went up to the hospital to see him.  He looked at and listened to my belly and didn’t change his mind.  It would be like reading tea leaves to propose a reason for my discomfort, he said.  But he was getting a bit concerned himself.  I guess what I’m experiencing is a bit out of the ordinary.  He gave me the go-ahead for the second chemo run but said that I’d need another CT if things didn’t improve until next week.

It’s impossible for me to say when this started.  When my current misery began right before Christmas, I was in so much pain and general discomfort that I didn’t bother to isolate individual aspects.  But I’m fairly sure this has been going on for two weeks at least.  It’s no fun, and I want it to end.  There’s a good chance this is the cancer growing happily, but it’s not too late for hope yet.