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.

Down and up

On Thursday, I went to see my doctor again.  Nothing special, just a checkup, a look at my blood values, how am I doing.  They seem to come weekly now.  At this point, I don’t mind.  This new therapy is still a bit cryptic to me.  Should I expect to suffer so much?  Or is there a different way of approaching this?

The doctor had no good answers.  He noted down all the symptoms I listed and nodded.  There was no “You can avoid this.” or “This will pass.”  It sounds as if I were to stay deep in this shit.  On the other end of the spectrum, the doctor sounded out my back with his fists and declared with utmost conviction that another drainage of the pleural sac wouldn’t be necessary.  The liquid hadn’t returned.  He didn’t even need an ultrasound to be sure.  He was very happy about this, and so was I.  It means that the therapy is keeping the cancer in check.  The question is whether it will also beat it back and, almost more critical at this point, how much of the therapy I can endure before my body caves in.

The doctor was also concerned about this.  He suggested to continue the therapy with three daily tablets instead of four.  I’m normally not one to shy away from a challenge, but I could see the sense in his words.  After this weekend, I agree with him even more.  My initial rational reaction was that during the first chemotherapy programs, the amount of intravenously administered drugs was calculated according to my body weight.  The tablets are given just so.  I’m a bit on the light side.  If a hefty fellow of 120 kg can happily swallow four pills a day, it doesn’t mean I can.

Thursday marked the end of the first cycle of the new therapy.  I was pumped full of drugs, maximally poisoned.  Now I have a week to recover.  The first three days showed how necessary this is.  Friday afternoon, I took a sick day, not something I normally do.  I was in no shape to do any work.  My brain was jelly, and my body a mess.  I slept most of the afternoon.  After that, I continued to feel like shit.  Flucha did everything in the house, even my few remaining duties with the children.

Saturday was similar.  It was a disaster.  I hardly moved and hardly did anything.  I got so tense that I could hardly sleep the night to Sunday because my back hurt like hell.  There’s definitely something to be said for exercise and moving around.  On Thursday, it had snowed in Baden.  More snow had fallen than during any time in the last fifteen years.  It was beautiful to look at – from the balcony or the window of my office where I retreat for quiet time – but couldn’t tempt me outside.  I knew I had to move but couldn’t make my body.

Sunday was better.  I felt a bit more energetic.  In the afternoon we went up the local mountain for some sledding.  I had to give up after the first ride because my delicate insides had given a clear thumbs down to the bumps on the run.  So I sat by the side getting colder.  I’m a cryophobe and didn’t like it too much.  But I was happy to be out there.  It was progress.

Later, guided by the girl who spends much more time on this mountain than we do, we started walking back to town.  No need to spend another 20 minutes on the local bus, which had been a real corona incubator on the way up.  The forest was quiet and the air clear.  The girl was very proud to be the one leading the way.  Stomping through snow more than 30 cm deep, I got a bit more exercise than I had bargained for, but it was all for the best.

The major acute problem that remains is that I can hardly eat.  I empty my (small) plate and right away, my belly feels as if it’s been stuffed to the max.  My digestion just sits there, doing nothing.  It’s like having your belly filled with concrete.  I wake up several times a night because the concrete belly just doesn’t feel right.  This is something to discuss with my doctor next week.  I must not lose any more weight.

Suffering

The first year of chemotherapy was a walk in the park.  With almost no side effects I know how lucky I was.  What I didn’t know was how bad it can be.  The current chemo program is an eye opener in this regard.  I have to take four pills – of a tyrosine kinase inhibitor, if anyone cares to know – every morning after breakfast.  I assume these pills go straight to my stomach.  There, they fuck with my stomach and then they fuck with my digestion.  My life has become brutal.

At mealtimes, I eat what’s on my plate, very slowly and without any enjoyment, not a bit more and not a bit less if I manage to get it all down.  It’s a mechanical process, a duty to my failing body more than anything.  I feel no pleasure.  I don’t eat much but it takes a long time.  Sometimes the children beat me to a clean plate.  Once inside the belly, the food lies there like rocks.  I feel like resting but it’s the wrong approach.  My digestion needs motion.

When I go for a walk after eating, the rocks start rumbling.  They bang into each other and cause pain.  They remind the gut that it also has to work.  The first ten minutes of each walk are always like balancing on a tightrope.  The reorganization of my belly and my gut’s contents is sometimes explosive and comes with sudden cramps.  I have to make sure not to be too far from a bathroom, just in case.  It’s usually false alarm, and after 15 minutes, things have usually settled.  I can continue my walk normally.

Getting into gear is the hardest part, and also the most important.  When I stay at home without doing anything, I’m slowly sliding into a state of jelly-like immobilization.  With every passing hour, I can move less (or feel like moving less) and feel less alive.  I get increasingly cold, lose all energy, function on a quarter brain only.  This is not good for work, which I mostly do from home these days.

The other day, I had a chat with the CEO and owner of the company I work for.  He wanted to know how I was doing.  I had no reason to hide anything from him and no uplifting stories.  His response was wonderful:  “You work when you feel like working and don’t when you don’t.”  The best thing about it is that he means it, but it’s not that easy.

No man is an island, in particular not one working in a company.  I work in a team.  Colleagues rely on my contributions.  I can’t just bail out on then from one moment to the next.  This needs a more thorough discussion and some planning.  I will talk to my boss this week to see what a solution might look like.  Maybe I get a sick note for 50% of my hours.  I will certainly need to tell my colleagues that my easy days are over, at least for now.

Thinking about working less doesn’t exactly lift my spirits.  Working less would be a clear sign that the cancer has the upper hand at the moment.  On the other hand, there’s no denying that this is the current situation.  It doesn’t mean it won’t get better.  This current, brutal therapy was very quick in reining in the cancer and getting the liquid out of my pleural sac.  Maybe a few more months of suffering is what it takes to get results the likes of which I have not yet seen during this journey.  I can live with a bit of suffering.

State of mind

Among the items I found under the Christmas tree was the book The Happiness Hypothesis.  Thinking that I could use some of the points in the book to introduce today’s post, I dropped into an impossible tangle of psychology and philosophy confusion.  Every word I wrote removed sense and logic from the paragraph.  Eventually I gave up.  There’s no need for blather.  I am quite happy at the moment.

I am feeling so much better than a week ago.  Last Wednesday and in the morning of  New Year’s Eve, I had my pleural sac drained twice more.  Each time, 1.5 liters of the same brown liquid were removed as before Christmas.  The difference this time?  The liquid didn’t quickly reaccumulate.  My breathing eased.  The X-rays showed decreasing liquid levels.

It’s not all good.  I cannot breathe deeply and I have to be careful how I sleep.  During the third puncturing of my pleural sac, the liquid drained so quickly that the decompressing lung banged into the piece of tubing inside the pleural sac.  No harm done, but the surface of the lung got a bit irritated.  I almost coughed my heart out before the nurse stopped the flow.  For a couple of days afterwards, stabs of pain would shoot from this area when I inhaled in a particularly vigorous way.

The doctor agrees that the reason for my misery over these last couple of weeks was the cancer growing out of control.  It was a bit like the second wave of corona in Switzerland.  When measures were taken, the cancer quickly slowed down.  Good thing I’m not reliant on the rest of the country complying with chemotherapy.  I started with two pills on Friday.  Last Thursday, I upped that to three.  Next week, I’ll do four, if the doctor agrees.  I’ll see him again on Tuesday.

Even if the therapy doesn’t beat the cancer, it will slow it considerably.  I wonder how long this can go on for.  The main side effect of the new drug seems loss of appetite.  One of the main goals during chemotherapy is keeping one’s weight and with it one’s strength.  Loss of appetite is dangerous.  It can end a therapy prematurely.  It is also very strange.

I’ve been doing very well so far with regards to eating.  I’ve kept my weight and my appetite through a number of therapies and an even larger number of fasting sessions.  Now I’m in a bit of a different situation, and it’s not a good one.  I haven’t eaten much since Christmas because I didn’t feel good.  Then I started chemotherapy.  While I got a bit better quickly, I also lost much of my appetite.  I was hungry but managed to force down only the smallest amounts of food.  This is very frustrating.  By now, I’m down a good four kilograms, even though I’ve been eating better over the last few days.  I’ve mentioned before that it’s not easy to gain weight.

Since Christmas, I’ve been mostly sitting on the sofa, being cold.  What I only noticed this morning is how I’ve been losing muscle.  I look like the skeletal remains of myself, with shriveled legs and sticks for arms.  I realized with some panic that I had got stuck in a place where I really don’t want to be.  A few days ago, I canceled my FulGaz subscription because I thought I wouldn’t quickly get back into a state where I would want to ride my trainer.  This morning, I pumped the tires and went for an easy spin, no resistance, just half an hour of moving my legs.  It felt good, it got my circulation going, and it told me clearly what I need to do.

The function of my lungs is largely ok.  My digestion is largely ok.  My body overall feels like an old man’s.  I went up and down the stairs a good dozen times today, mostly to make a point.  I started helping in the kitchen and with the children.  I need to involve myself more, be more energetic, show signs of life.  The body might currently not be a willing partner in these exercises, but right now it’s all in the mind.  I cannot remain stuck in passivity and ruin.

Happy New Year!