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.