Sunday, October 27, 2019

Riding nowhere

Today, before dinner, I rode the Severn Stoke time trial course, a ten-mile loop that’s largely flat but ends with a biting climb.  It took me 30 minutes and I pedaled an average of 135 watts.  Yesterday morning, after a leisurely breakfast, I rode another rather flat course, the beach road to Mordialloc in Australia.

You will quickly say that this is impossible.  It takes more than a day to fly from Australia to England, never mind the transfers to and from the airports and getting ready for the ride.  You are right.  I didn’t leave Switzerland this weekend and rode both courses in our guest room, where the Wahoo Kickr Snap I had purchased earlier this week clamps to the back wheel of my bicycle to turn it into a stationary exercise bicycle.

Many studies have shown the benefits of vigorous exercise during chemotherapy.  It significantly improves physical function and energy levels, and can lessen treatment-related side effects.  The Clinical Oncology Society of Australia that was already quoted in the previous post goes on to say that “if we could turn the benefits of exercise into a pill it would be demanded by patients”.  As exercise still isn’t available as a pill, one has to work for it.  Turns out just riding my bike to work won’t suffice.  Guidelines for exercise during chemotherapy are much tougher.

  • At least 150 minutes of moderate-intensity or 75 minutes of vigorous-intensity aerobic exercise, such as cycling, each week.
  • Two to three resistance sessions, such as lifting weights, each week involving moderate- to vigorous-intensity exercises targeting the major muscle groups.

This is a month of my previous healthy-self winter exercise activity rolled into a week, supplemented with resistance sessions that I’ve never done.  It sounds brutal and rather contrary to common sense for a sick person, but the studies are unequivocal on the benefits.  With the Kickr, I’m ready to give it a go.

In the past, riding a stationary bicycle was a dour experience.  Exceptional self-control was required to defeat the boredom of going nowhere while sweating like a pig.  The only thing that moved was the clock, slowly.  I once owned such a device, way back in Utah, but quickly gave up with it.

Things have changed greatly now.  The Kickr connects to an app on my phone (currently FulGaz; Zwift is another popular choice) that shows a video of the course I’m riding.  The app controls the resistance of the trainer to make it harder when the road rises and easier when it slopes down.  Mirrored to a big screen, the experience is not exactly life-like, but it’s motivating and fun.  With three 30-minute sessions on weeknights and an hour-long session on Saturday morning, I’ll reach the recommended 150 minutes of exercise a week.

I might even go buy dumbbells for the off-days.  Once you start chemotherapy, you suck up any hope there is.  I hope that the drugs do what they’ve been designed to do without destroying me completely.  I hope that I’ll remain strong to fight this cancer.  I’m happy to invite a little bit of pain on an exercise bicycle if it takes away from the much greater suffering that I’ll have to endure.


The irony is that my oncologist had earlier asked me to sign up for a randomized trial by the Swiss Group for Clinical Cancer Research to study the benefits of regular exercise during chemotherapy.  The participants will be split in two groups.  Half are free to do as they please.  The other half are tested by an exercise physiologist and then invited to the hospital for controlled training sessions twice a week.

I declined the offer.  There's nothing to be gained from being in the control group, and going to the hospital for exercise is just a waste of time.  Instead, I bought a heart rate monitor to make my stationary cycling more effective.

Saturday, October 26, 2019

Riding up

What a wonderful day it was.  It started with fog in the valley but by lunchtime the sun had come out.  We decided to spend the afternoon on the Baldegg, a hill 200 meters above Baden with a witch-themed wooden playground, a restaurant with a big terrace, and stunning views in all directions.  From town, a city bus runs all the way to the top, but I was contemplating the bike.

When I had checked out of the hospital after surgery, biking was explicitly forbidden.  On the way out of the hospital after the first chemotherapy session four weeks later, I ran into the surgeon by accident.  “You didn’t ride your bicycle here?” she asked with some concern.  I hadn’t, but I’ve done so since.  I rode my bike to and from work a couple of times.  Friday afternoon, I went home through the forest.

It’s not just that riding a bicycle is important to me.  Of course it makes me happy and deludes me into thinking that things are all right.  But it’s also of immense therapeutic value.  Fitness during chemo reduces treatment-related side effects and improves overall well-being.  The Clinical Oncology Society of Australia goes so far as to say that “withholding exercise from patients is probably harmful”.  The details are for another post, but let’s just say that I’ve purchased a smart turbo, installed my road bike on it, and done the first training sessions in front of my big screen showing rides I’d never seen.  How would a real climb feel?

From our house to the Baldegg it’s only 4.5 km.  The central 3 km clock in at slightly below 6%.  This is not a lungbuster, but it’s not exactly flat either.  I hopped on my new Cube with slight apprehension, riding the tunnel into town and then turning right into the hill.  The Baldegg is not the Alpe d’Huez.  It starts steep but not brutal.  I had to shift down, breathe hard and break a sweat, but I arrived at the top without any difficulties.  The bus with the family arrived a few minutes after me.

We spend a few hours up on the Baldegg.  It was almost warm enough for t-shirts.  The children endangered themselves on the playground – installed, like many in the region, by the company No risk, no fun – we romped through the forest whose main color was orange, and we tried to identify the major peaks of the Alps just barely visible through the haze of fall.  At the end, we had coffee and cake on the terrace.

I draw two immediate conclusions from the ride.  The first is that I’m in much better shape than when I lived with an undiagnosed cancer.  This is really stunning.  In spring and summer, I couldn’t have done this climb so easily.  I might have turned around.  The second is that I have truly recovered from surgery.  I can exercise on my bike without any problems.  The third conclusion hit me on the ride down.  A weekend ride won’t do it.  I’ll have to kick it up quite a bit to reap health benefits from what I like doing.

Thursday, October 24, 2019

First session

My first chemotherapy session is fully over now.  It started on Monday with approximately four hours of transfusions interspersed with explanations and education on potential side effects.  When all the drugs had entered my body, I was sent home with a pump that would squeeze another 120 ml of drugs into my blood over the next two days.  I left the outpatient clinic at the hospital shortly after lunchtime.


A pump attached to a port in my chest with a valve taped to my sternum.

The term pump is a bit misleading, though everyone calls it that.  It’s a plastic bottle that contains a transparent bladder of low elasticity.  Inside this bladder is a solution containing the drugs.  For the next two days, I had to carry this bottle with me wherever I went.  It rested next to my pillow at night.  As the bladder slowly contracted, the drugs passed through a clear tube connected to the port implanted above my chest.  A body heat-controlled valve taped to my chest ensured a constant flow at the right speed.  When I returned to the clinic to have the pump removed 48 hours later, the bladder was almost completely empty.

The first three days of my chemotherapy regimen are apparently notorious for nausea.  I started each day with a capsule of a strong anti-emetic designed to last the entire day.  It worked.  I didn’t feel nauseous.  The other side effects were supposed to appear around days 3 to 5.  Today, I experienced some rumblings in my gut and a general sense of hazy tiredness, but nothing dramatic.  I felt confident enough to book a flight for a business trip to England in a week.

The side effects were minimal, but this is no reason for enthusiasm.  On the one hand, somewhat misguided, there’s the saying, No pain, no gain.  A drug that works has side effects.  Otherwise we’d all be doing homeopathy.  In some messed up corner of my mind, I've turned this logic around to say that a drug that has side effects works.  This is nonsense, but I want to suffer like I’ve never suffered before.  This would give me the feeling I’d be fighting the cancer with all I’ve got.

I might yet be getting what I long for because, on the other hand, experience teaches that the first chemotherapy session is always the gentlest.  As in my case, it frequently passes without adverse effects.  With every additional session, the drugs accumulate in the body until the patient retches and cries, bleeds and hurts, and can’t take it anymore.  The hope is that this kills the cancer before it kills (the fighting spirit of) the patient.

My spirit is strong, and I will fight to survive even when the suffering grows, but there’s one side effect that’s stronger than all physical pain.  The greatest torture of this therapy will always be the poor prognosis.  The moment I muse on this, all energy drains from my body and a sense of futility knocks me down.  I abandon hope and surrender to the disease.  There’s comfort in giving up.  Then I remind myself that I’m alive, that not all hope is lost yet, and that the ultimate goal remains the same and is still there.  I am ready for more.  The second chemo session will start on 11 November.

Monday, October 21, 2019

Mind games

The worst thing about chemotherapy is the side effects.  No one tires of saying this.  You are given toxins at the maximum dose you are thought capable of not just of surviving but also enduring in a halfway decent shape.  After all, there’s more to come.  The hope is that the concentration of toxins is high enough to kill the cancer or, if this proves impossible, delay its advance.

Every patient reacts differently.  During the first chemo session, it’s absolutely unclear what will happen to each one.  Ten per cent of patients experience such and such effect is of no use at all to the individual.  It might even be counterproductive.  Educated as I am now on all possible side effects, I scan my body for every little sign that things are about to hit me in a big way.

There’s a metallic taste in mouth and a curious coolness, as if everything I drink were laced with menthol.  My lips tingle and my fingertips feel as if I were snowriding on a particularly cold day.  I am slightly sluggish.  Walking from the hospital to the bus, I had half convinced myself that I was really sick.  To quote from Chicken Run, “It's all in your head, Mr Tweedy.”

There’s a real danger here, I think.  After chemo, I went home, thinking that it would be a good place to find out how my body reacts.  The drawback is that I quickly got sucked into mindlessness and inactivity, reading things I don’t really care about and watching the other half of the internet.  The empty flat with no one to talk to and no one to guilt-trip me into animation sucked all motivation right out of me.  I could never run a successful home office.  The lack of focus and inspiration is even worse when the task is to survive cancer.  Only active positivity will do.  Optimism drives cures.  Enthusiasm is strength.

Instead, I found myself slipping into the mindset of a sick person, and one thought led to another.  Sick people don’t work.  Sick people are weak.  Sick people are not doing well.  Maybe I’m doing much worse than I think, as poorly as the doctors insist?  I started questioning the therapy.  What good is it really going to do me?  Will it increase my survival, or will it just cause misery?  Soon I was sitting on my sofa in complete pathological apathy.

I don’t want to feel this way.  I don’t want to have my mind let go of the old reality of being healthy, strong and energetic.  Death, as a recent study showed, is something that befalls other people.  For this to remain true, I need energy on every stage of this long and arduous course.  My family and friends have been amazing in their cheering and support.  Beyond that, I get energy from structure, responsibilities and purpose.  Tomorrow, unless I’m too messed up to get out of bed, I’ll take the boy to childcare and be back at work.

Chemotherapy

As it’s always good to set out with something positive, here’s the good news.  My red blood cells have recovered.  With a hemoglobin count of 120 g/l and a hematocrit value of 40%, I’m still at the lower end of what’s normal and I won’t win races in the mountains, but I can exercise normally and won’t feel limited.

The blood for the test was taken from my finger this morning when I checked in at the outpatient oncology clinic of my favorite hospital.  It was like something out of a Theranos commercial when this hot air balloon was still floating.  A bit of blood from my finger, five minutes of analyses, and I was off with a sheet of paper with two dozen numbers and a few graphs.  I was happy with what I saw.  The doctor looked more closely and dampened my excitement.  I might yet get another iron transfusion.

The outpatient oncology clinic is a newish cube slightly off the main hospital building, connected by a tunnel-like walkway.  It is a quiet, friendly place with large windows towards the woods, four beds to a room and caring nurses.  Patients are offered tea and coffee, soup, a tablet to kill the boredom and toxins to do the same to the cancer.

I was made to swallow a bucket of drugs to suppress the nausea that inevitably accompanies chemotherapy.  Now I was ready to start.  To make recurring transfusions and the taking of blood samples easier on me, I’ve had a port implanted halfway between my right chest and shoulder.  It’s a circular button under the skin that protrudes about a centimeter.  After it was inserted during the surgery four weeks ago, it stretched the skin a bit, but now I don’t feel it anymore and appreciate the convenience.  No more puncturing of veins, and less damage to them by the drugs.  For efficient dilution of the drugs in the blood, the port extends almost into the heart.

Talking about drugs, today my cocktail comprises oxaliplatin, calcium folinate and 5-fluorouracil.  Initially, irinotecan was also prescribed, but the doctors thought its potential benefits would not outweigh the toxicity in my case.  This is quite frustrating.  Why are drugs kept from me?  How will I beat the cancer this way?  But I don’t know better and I have to trust the doctors.

  • Oxaliplatin is a platinum-containing compound that forms both inter- and intrastrand crosslinks with DNA.  It prevents replication and transcription and thus causes cell death.
  • Calcium folinate is a salt of folic acid, also known as vitamin B9.  If I understand it correctly, calcium folinate serves to increase the effect of oxaliplatin.  The two are given together.
    → I clearly didn’t understand this correctly.  Calcium folinate is the salt of folinic acid, which is very similar to but distinct from folic acid.  Calcium folinate, also known as Leucovorin, enhances the effect of 5-fluorouracil by inhibiting thymidylate synthase.
  • 5-fluorouracil should be an easy one for a biochemist.  I would think that, as a nucleoside analog, it is incorporated into RNA instead of uracil and into DNA in place of thymine and thus screws with replication and transcription.  However, Wikipedia cautions that “how it works is not entirely clear”.

The chemicals wash into my blood while I lounge on a bed writing this post.  The administration itself is clearly harmless, but chemotherapy isn’t for chickens.  I was warned of severe and broad side effects, from numbness in my extremities to bleeding, from nausea to a higher risk of infections.  I might even lose some of my hair.  This is something for another post.

From the next session, Avastin will added to the mix.  This is an antibody that will turn chemotherapy into a biochemotherapy, which pleases the biochemist in me.  Avastin blocks the growth of blood vessels.  It is thus not an agent specific for colon cancer.  I wonder what happened to therapeutic antibodies.  Shouldn’t it be possible to genetically characterize the cancer and use therapeutics targeted to surface markers specific to my cancer.  Are we not there yet?

Sunday, October 20, 2019

Journal club

Some say your chances of surviving cancer are better when you’re educated about your disease.  You can ask the right questions and make better decisions when the doctors give you options.  I know almost nothing about colon cancer, and my understanding of the biochemistry of cancer in general is rather limited as well.  When I was presented with options by the surgeons or oncologists, I went with what they recommended, and when they weren’t forthcoming, I went with what felt right.  (Calling it “gut feeling” certainly doesn’t feel right.)

To get some background on my case and gain an understanding of where the challenges lie, I started digging into the scientific literature on colon cancer.  I want to know the therapeutic options, understand which ones are preferred under what circumstances, and find out the chances of a cure.  This is no easy task.  PubMed, the archive of biomedical literature, returns 45,400 papers matching the phrase “colon cancer”, nearly 3000 of them published this year.  “Colon cancer” + “peritoneal carcinomatosis”, a rather exclusive pair of terms, returns 160 papers.  This is still a lot, but something I can deal with.

Here’s a good reason not to read too much about your disease.  One of the first publications I picked was a short paper from the American Society of Clinical Oncology’s annual meeting reports from 2015.  It starts, “Metastatic colon cancer is generally considered incurable”.  Which patient might find this information helpful?  I don’t.  I don’t see myself as incurable, and I’m not undergoing therapy for any other reason than being cured.  Despite the blow, I continued reading and, as is often the case, my persistence paid off.  A few pages on, the authors of the article clarify that, “it is conceivable that patients with limited peritoneal disease that can be completely resected may experience a cure”.  This is something I can work with.

I already know what’s bad about my case:

  • Late diagnosis.  Early cancer diagnosis goes along with a small primary tumor and lack of metastases.  Colon cancer is often caught before it occurs, when growths in the colon are still benign.  But you have to undergo screening for this.
  • Peritoneal metastases.  A cancer that spreads is more difficult to treat than one that’s in one place.  The peritoneum is particularly problematic because it’s difficult for chemotherapeutic agents to reach.

Here’s what’s good about my case:

  • Me.  I’m young and in good shape and ready to fight and survive.
  • Colon cancer.  This is a type of cancer with generally good prospects of a cure.
  • Successful cytoreduction.  The primary tumor and all visible metastases have been completely resected.  This is associated with improved survival.
  • No metastases beyond the peritoneum.  All vital organs are clear.  This must be a good thing.  Metastases in lung and liver are much easier to treat than those in the peritoneum, but it must be better not to have to treat them in the first place.
  • No tumor markers in the blood.  I interpret this as a limited ability of the tumor to spread.

In spite of the 5:2 score in my favor, I can believe the odds are stacked against me.  Everyone says so, and it makes sense.  But I also believe that I have a fighting chance.  Surgery was an important first step.  The next one is chemotherapy.  How to do this right is not totally clear.  The article cited above ends as vaguely as it starts clearly, by stating that “the optimal approach for patients with peritoneal carcinomatosis will remain controversial”.

One of the controversies is whether to do chemotherapy systemically, as is planned for me, or in a targeted way.  I’ve mentioned HIPEC (hyperthermic intraperitoneal chemotherapy) before.  In this rather harsh and somewhat dangerous procedure, heated anti-cancer drugs are administered directly to the peritoneum – while the patient is cut open.  I missed out on this – whether by accident, by not insisting on it or by design remains unclear.  (According to the surgeon, it didn’t make sense.)  I might yet go for a second opinion on HIPEC, but in the meantime, I’ll get the first full bucket of traditional chemo tomorrow morning.  Wish me luck.

Friday, October 18, 2019

Back to normal

The bad thing with this blog is that I’m more active when I’m in the hospital, with all the time in the world to write.  You must think I’m half dead because you only get to read the bad parts.  For all you know I’m still suffering diarrhea and abdominal pain of unclear origin. Continue reading to find out that this is not the case and be assured that there are only a few bad days that interrupt my life.

On Wednesday, I was once again released from the hospital.  I had progressed from liquid food to solids within a couple of days and was now ready to eat normally.  The IV drip was long gone.  I had been hungry almost constantly the last two days.  My belly didn’t hurt anymore under the doctor’s inquisitive fingers, and even my poo firmed up.

In a scary sign that hospital has almost become a second home to me, the first thing I did upon leaving the ward was stop at the cafeteria.  As I said, I was hungry.  I seriously contemplated getting a coffee and a pastry and relaxing for a while and maybe writing the next post.  It’s a nice cafeteria in a nice hospital.  Sense prevailed.  I just got the pastry and ate it on the way to the bus home.

Before they let me out, the doctors gave me prescriptions for an antibiotic and to soothe my stomach.  Self-medication has since turned out to be one of the hardest things.  I’ve never done drugs in my life.  Now I’m supposed to stick to schedules and remember to take pills every eight hours.  I’m constantly behind.  This is not an easy habit to get into.  Good thing chemotherapy works by transfusion.

On Thursday, I went to work primarily to attend group meeting.  I had told my boss that I’d announce my diagnosis to the group, to explain my long absences and reassure them that I’m alright – for now and for the most part.  It seemed to me easier to do this with a little speech than in a dozen awkward conversations.

The closer I got to the occasion, the more I doubted my approach.  On the one hand, I didn’t feel strong enough to rise in front of all of my colleagues and tell them my life-threatening condition.  On the other hand, I wondered what message I would send.  Wouldn’t they all feel forced to react in some way?  What right do I have to impose myself like this?  It’s a bit unfair to put something in front of someone in such a semi-anonymous way.  It will have to be many awkward conversations, but so far I haven’t found the strength for a single one of them.

In the evening, I rode my bicycle home from work.  I had bought a new bicycle just a few months ago, a curious hybrid that I found in a Google ad when looking for something quite a bit different.  It’s got the wheels and simplicity of a cross bike, the price tag of a city bike, the wide handlebar of a modern mountain bike, and the stiffness of a racer.  It was cheap but looks and rides nice.  On the road, it rides almost like a road bike, but I can also take it through the forest between work and home.  It wouldn’t survive serious trails but fire roads are good fun.

That evening, in a display of good judgment that doesn’t come to me easily, I dropped the idea of the forest in favor of the road.  It’s less enjoyable but smoother, and I thought my belly might appreciate my concern.  Since leaving the hospital after the surgery, I hadn’t got an update on the bike and running prohibition.  Better take it easy, I thought.  The road was indeed a good idea, as every little bump reminded me that I’m not fully restored yet.  The forest would have been stupid.

Maybe going to work was stupid in the first place.  I had a sick note to last me all week.  Shouldn’t I rest when I can?  Shouldn’t I conserve my resources for the upcoming therapy instead of pulling hard at work?  Maybe the key to my suffering, not only last weekend but also the knock-out a week earlier is my going too hard, too fast?  Am I irresponsible?

I am who I am.  I don’t think cancer has changed me yet, and I have a suspicion it won’t.  I’m too stubborn for this.  There’s no way I’m going to slow myself down, especially if I feel good, and I do feel much better than at any point since surgery.  I get small pangs from my belly on occasion but they are reminders rather than pain.  I can ride my bicycle.  It’s no exaggeration to say that I’m back to normal.

Tuesday, October 15, 2019

Risk factors

Lots of people get cancer.  It’s the leading cause of death in rich countries for males aged between 35 and 70 years, edging out heart disease for the first time in the latest published statistics.  In cancer, your own body, your own cells turn against you, eating you up from inside.  The reasons are not always clear.

There are risk factors and there are random events like mutations that allow cells to jump checkpoints and start dividing freely.  It’s generally held that the two have to act in unison or that – in the absence of quantifiable risk factors – multiple unlikely random events have to come together to cause cancer.  To answer the admittedly futile question of Why me?, it’s worth having a look at what might have predisposed me to cancer.

Here are two major risk factors for colon cancer:

  • Genetic factors – A couple of hereditary colon cancers account for 5% of all cases.  They are called hereditary non-polyposis colorectal cancer (also known as Lynch syndrome) and familial adenomatous polyposis.  The tissue taken from my colon registered negative for markers of these two syndromes.  Then there are families with increased incidence of colon cancer in the absence of a clear genetic link.  Mine is not among them.  This will come as a relief to my children but doesn’t help me rationalize the disease.
  • Lifestyle – Excessive alcohol consumption, poor diet, smoking and inactivity increase the risk of colon cancer.  Those exercising regularly have a 25% decreased risk of contracting colon cancer.  I tick all the boxes for a healthy life and get colon cancer at 44.  For Christmas, I want a box of Montecristos, Tequila and Whisky by the barrel, and a big TV.

I wouldn’t have been too surprised to be diagnosed with skin cancer.  I spent too much time out in the flaming sun of Utah, entire afternoons riding my mountain bike with scarcely a thought for solar protection.  Through the seasons, my skin grew darker.  I took this as a sign that my body was taking care of itself.  In Grenoble, the pattern continued when I went out on even longer rides on my road bike.

Whenever I return from Argentina these days after a New Year’s spent in the burning heat, I inspect my skin for new or growing moles.  Some years I get irrationally frightened, but I have never been able to confirm anything, despite many poorly lit bare-chested selfies taken in front of the bathroom mirror.  Now I have colon cancer.

Here are two more risk factors:

  • Age – The older the better for the cancer.  In countries where colon cancer screening is covered by health insurance, it’s normally not done before 55.  This would have been a long wait for me.
  • Antioxidants – Recent research indicates that supplementing your diet with antioxidants increases your risk of cancer in general, probably by allowing damaged cells withstand the body’s defenses and become cancerous.  I have never used supplements in my life.

None of the risk factors applies.  Might my colon cancer simply be a sign that God hates me?  I find this unlikely.  My disease is not proof that God exists.  This leaves only one risk factor, the one responsible for my cancer.  It’s called sheer dumb luck, and there’s nothing to do about it, and no philosophical questions to ask.  Accepting this, I have a clear mind to focus on treatment and survival.

Monday, October 14, 2019

Hospital fraud

The night to end my worst weekend in years was even worse than the preceding two days.  I woke up every two hours with excruciating pain in my abdomen.  I went through the by now established bathroom routine, which didn’t help.  I went back to find rest, turning left, turning right - sorry for repeating myself - before ending up where I had started, on my back and in great discomfort.  Eventually, I would fall asleep again.

In the morning, I called the emergency ward.  They connected me with the surgeon who had performed the hemicolectomy.  She invited me to come up to figure out what was wrong.  “The CT scanner is already warming up”, she said.  I shuffled to the bus stop and made it to the hospital in one piece, mighty proud of myself.  My belly still hurt as if someone had forgotten not just little scalpel inside but a full-size cheesegrater.

Over the next six hours - so much time that I even started watching TV by the end - my blood was analyzed and I was CT’ed.  Word of my curious reaction to iodine during the first CT had got out.  This time, I got a preemptive shot of anti-histamine.  It was a rather bizarre experience to have the anti-histamine and the contrast agent battle it out inside my body.  The anti-histamine recorded a narrow win.

All blood tests came back good.  The CT looked all right too, certainly no problems related to the surgery.  The radiologist had flagged slightly thickened walls of the stomach and the small intestine.  Could be an infection, bacterial or viral, or something I’d eaten.  “It doesn’t matter”, the doctor said.  “I’d like to keep you here for a couple of nights to see that you’re getting better.”  If I were a normal, healthy person, she’d have sent me home to sleep it off.

I’m not healthy, but the curious thing is that I was feeling so much better already.  Maybe it was the wholesome air of the hospital.  Maybe it was the reassurance that nothing grave was wrong with me (besides what is obviously gravely wrong with me).  Most likely, it was my body winning the battle – and it would have done so, even if I had stayed at home.

By the afternoon, I felt a bit like a fraud.  The pain was largely gone, and I was hungry for the first time in days.  I looked to myself like an intruder in the hospital, keen on attention and rest.  To the doctors and carers I looked like a patient.  I went back to the simplest meals, the kind of which had got me started after the surgery.  I won’t be gaining any weight this way, but it will probably help my digestion get back up to speed.

If I can draw any conclusions from this episode, it might be these.

  • I’m not as strong as I used to be or as I wish I’d be.  The cancer and the operation have taken their toll.  In the past, I would not have struggled for more than two days with whatever it was.  In fact, I never have.
  • I’m still strong, against the odds.  I’m strong enough to take care of myself.  I don’t need doctors for banalities.  It will be a different story on Monday morning, when chemotherapy starts and my strength will be put to the real test.

It’s easy to get used to being at the hospital for little whiles at a time.  People are friendly, take care of you, feed you (depending on the shape you’re in) and you relax, recover and rest.  After one night, I should be ready for work and then family, but will the doctors be ready for that?

Sunday, October 13, 2019

Weight-loss weekend

The last three days of the week went so well, I started deluding myself once again that everything was all right and cancer only a bad dream. I ate and digested normally and went to work on Thursday and Friday, not entire days but almost, and while I didn't have the sharpest focus, I was ok to do what I had to do. I went to see the oncologist on Thursday and my family doctor on Friday and ran errands without problem. The doctor said that while my blood values weren't normal yet, they're closer to the normal range than to their lowest values measured four weeks ago. What's not to like?

On Friday afternoon, in keeping with the nutritionist's advice of copious snacking, I ate half a bag of cashews. At night, I all but collapsed again. I can't be absolutely sure it was the cashews but it must have been. Everything else I ate I had already eaten over the course of the past two weeks, and it hadn’t done me no wrong. After the cashews, I spent a night of misery.

I woke up every hour or so, sometimes more frequently, with the need to visit the loo. Diarrhea had struck me hard. My gut was being cleansed as if Gwyneth had provided her detox drinks again. It was all liquid. My gut strained and gurgled, as if liters of water were washing down, though I didn’t drink a thing. By Saturday morning, I was getting a bit concerned but I was too tired to act on it and spent half the day in bed.

By afternoon, things seemed improved. The intervals had lengthened, and I felt up to getting up and going out. It was just in time: a friend had announced his visit for the afternoon. I got to the train station only a couple of minutes late. I felt optimistic again. As a few things before, I’m overcoming this, but when we sat down for dinner later, I could only down plain white rice, and not much of that either.

I spent the next night getting up a few times, with the same symptoms. Diarrhea, an upset digestion, and general fatigue. At one point, out of nowhere and with seemingly no trigger at all, I started vomiting a toxic looking orange liquid. I filled the boy's potty to capacity, and went back to bed.

Today was slightly better, though I spent most of it in bed, too feeble to do much. Whenever I got ambitious, I was taken back down by violent squalls of pain in my gut. This is not something that I experienced after surgery. Where does the pain come from? Right after they removed half my colon and scraped the peritoneum clean, there was soreness inside me and some pain made sense. But now, three weeks later? I’m at a loss.

In my despair I called the hospital, but the emergency triage nurse held me back. The surgeon would be much better placed to help me on Monday, and why don’t I rest the night at home and see how things develop? I’ll call again tomorrow morning, no matter what, because I’m getting slightly concerned here. I’m supposed to start chemotherapy in a week, and I’ve lost most of the weight I’ve put on since the surgery. I’m not exactly at my strongest.

Thursday, October 10, 2019

Dead man walking

The consultation started with good news that wasn’t exactly news.  Surgery had been a success.  The primary tumor and all visible metastases are gone.  I am R0.  No residual tumor can be detected.  The oncologist further said that my blood was free of tumor markers.  This was not good news, just an observation.  My blood had been clean even when the tumor was proliferating in my colon.  Yet another sign that my case is a bit unusual.

The oncologist was impressed with my progress after surgery and half surprised that we were talking about chemotherapy a mere two and a half weeks after the operation.  I took this as good news, but it wasn’t.  Or maybe it was good news on a small scale while the outlook overall is still bleak.

In ten days, I will start chemotherapy.  It’s the obvious next step and the only way of getting rid of the cancer, but the oncologist was rather negative.  “Your chances of a cure are slim.  Some might say very slim.  Our primary objective should be extending the good life you have left.”  This is not what I came to hear, and it was quite a whammy to start the consultation with.  But I do appreciate honesty and bluntness.  What’s the point of ambiguity in such a situation?

There is some ambiguity because of the option of doing HIPEC (hyperthermic intraperitoneal chemotherapy).  In this procedure, heated cytostatic drugs are sloshed around the ventral cavity while the patient is anesthetized and cut open.  This can improve the therapeutic outcome in patients with cancers that metastasized directly and exclusively into the abdominal cavity, patients whose bloodstream and organs are clean.

I’m a bit confused as to why I shouldn’t benefit from HIPEC.  I seem to tick all the boxes.  Clean organs.  Clean blood.  Messy peritoneum.  But there’s more to it.  The oncologist told me my PCI (peritoneal carcinoma index) was only 10-11.  HIPEC has been shown to be beneficial only in patients with a PCI between 12 and 16.  For all others the risk of another major surgical intervention outweighs the benefits.

I haven’t read up on what the PCI is, how it is calculated and what the error bars on the reported numbers are.  It seems to me that I’m not that far away from the range where HIPEC is indicated.  How can the doctors be so confident in excluding this option?  Maybe I need a second opinion.  On the other hand, do I really want to have my gut slit open again?

Instead, we discussed two options for chemotherapy, one milder, the other one harsher.  The milder version makes it easier to undergo therapy.  The harsher one might prolong good life (but probably not total life).  Which one would you choose?

The decision was easy for me.  Prolonging good life is not interesting to me.  Dying gracefully holds no appeal.  I’m here to survive.  When the doctor said that the harsher therapy would marginally increase my slim chance of survival, I quickly chose pain.  Sign me up for half a year of misery!

Now came the delicate business of squaring chemotherapy with my traveling schedule.  I didn’t want to give the impression of wrong priorities, but I needed to squeeze the next four trips in.  I’m looking forward to every single one and will draw strength from them.  Good thing is that they’re all increments of two weeks apart.  A cycle of chemotherapy takes two weeks, with one day of infusions, two days on a portable pump, a few days of side effects, and the second week relatively painless.

The oncologist was accommodating.  He scheduled the first chemotherapy session two weeks before my next trip, with an extra week of recovery to make sure I respond well to the therapy and don’t suffer from debilitating side effects.  The second session would start right after I’m back from that trip, and so it would continue, neatly enclosing trips to Singapore in December and Thailand in January.

Maybe I do have my priorities wrong.  But if I’m a dead man walking, as they claim, I should at least walk where I enjoy it.  And if, against all odds, I do survive, I’ll have more stories to tell.

Oncology questions

Today I will be back at the hospital for the first time in nearly two weeks.  The oncologist will update me on my condition and probably also outline a schedule for chemotherapy.  It's good to talk; I'm quite confused about this cancer.  To get some clarity, I have prepared a number of questions that I'll take with me to stimulate the discussion.

  • What caused the colon wall cells to run amok?  Were any mutations found in tumor suppressor genes, kinases, etc.?
    → There are no mutations specific to hereditary colon cancers.  This is good news for the family.  There might be spontaneous mutations in regulatory proteins.  The doctor didn't go into specifics and I didn't press.
  • Do I still have colon cancer?  The tumor is gone.  What do I call my condition?
    → I most definitely still have colon cancer.  The metastases were derived from the primary tumor, as are the micrometastases and free cancerous cells that chemotherapy is supposed to kill off.
  • What are the chances the tumor has spread beyond what we have seen and ruled out?  What are the chances it will?
    → The oncologist thought only the liver is likely target.
  • Will treatment focus on the peritoneum where the metastases were found?  How is the rest of the body kept clean?
    → Chemotherapy is systemic.  The oncologists didn't think the more localized HIPEC treatment was worth the risk as it's unlikely to improve my prognosis.
  • I will probably not be strong enough to ask the question of whether we are talking curative or palliative chemotherapy, and in the end it probably doesn't matter.  I'll take everything I have to do as a step on the way to a cure.
    → Here, the doctor helped, if that's the right word.  He spoke of life-prolonging and quality of life-increasing therapy.  The chance of a cure is very slim.
  • Will my health insurance cover the treatment?  There had been some doubt about the cost of one of the antibodies.
    → Yes.  This is a civilized country.  Everything is covered beyond the annual deductible and my 10% share.
  • During earlier discussions, the surgeons and the oncologists were in agreement that my case (of extensive metastases in the peritoneum but not in organs) was highly unusual.  If I need to lighten the mood, I could ask whether I might be the basis of a case study in a clinical research journal.  I'd even help write the paper if I can have co-authorship.
    → Highly unusual for sure, but no word of a joint paper yet.
  • A similarly ridiculous question (because I know the answer) is whether I could be present during the next Tumor Board meeting discussing my case.  I'd even wear a white coat.

Before I go to the consultation today at eleven, a quick general update:  Yesterday was a brilliant day.  In the morning, I ripped off the remaining stickers that covered the cut down my belly.  It didn't hurt, and the cut looked nice.  I weighed above 58 kg without any clothes.  I ate (not outrageous amounts but a lot) and felt good about it.  No breakdown like two days earlier.  I didn't even need to rest.  It felt almost normal.  Not eating too much might be an important point.

Tuesday, October 8, 2019

Gaining weight

I can feel progress.  Sometimes on some days I feel almost 100% normal.  I am full of energy, think clearly, walk around with a purpose.  The bathroom scale shares my optimism.  It’s getting very close to giving me a big 6 in return for my efforts with the calories.  Life is good.

Then there are other times.  I tend to lie down after meals.  My body complains when I skip the rest.  From time to time, about once a day but sometimes more often, a piercing pain burns through my gut.  This must have something to do with digestion, but it feels as if the pieces that were stitched together when the tumor was removed are coming apart.  This can’t be, and the pain doesn’t stay long.  If it did, it would be quite difficult to take.

Yesterday, two weeks after my operation and one week out of hospital, I made another effort at bringing normalcy back to my life.  I took the boy to childcare and then the bus up to work.  The bicycle is still out of the question, much as I’d love to.  At work, I sit or stand at a desk most of the time.  Sometimes I’m in meetings, sometimes I walk around.  My job is far removed from manual labor.  I don’t have to carry anything beyond the limit of 5 kg that the doctor set me when I left the hospital.  Working isn’t much more strenuous than resting at home.  Or is it?

After some catching up on accumulated emails and tasks, I had a big lunch in our cafeteria, chicken saltimbocca with risotto and grilled zucchini, and a front row-seat to our monthly company-wide assembly that followed.  Listening to company news, sales figures, strategy updates, product developments and new technologies might be like sleeping, but I had the uncanny feeling of missing out on my nap.  Something was brewing down there, and it didn’t feel good.

I hobbled back to my desk after the meeting.  I wish I could have called it walking, but I wasn’t.  Holding on to my mouse, I survived another hour or so but eventually had to throw in the towel.  First, I lay down in one of the private rooms my company provides for whatever reason, maybe exactly this one.  I didn’t find peace there.  Half an hour later, I made my painful way back home where I collapsed in bed.

Strange that the bed didn’t provide any solace.  I couldn’t lie on my back.  It felt as if my belly were stretched to ripping.  I couldn’t lie on one side (instantly uncomfortable), and I couldn’t lie on the other one (not quite as bad but not pleasant, either).  All I could do was roll up in the fetal position of those who are near a painful death.  I arrived in this position at four and stayed there, interrupted by frequent and futile tossing searches for comfort, until ten.

At six, when Flucha came home with the children, she was rightfully concerned.  Maybe I should have been as well.  Who knows what the reason was?  I didn’t.  I assumed it was the big lunch and the skipped rest, but I had had big lunches during the weekend without any problems.  With every passing hour, I regretted not having called the hospital for information and reassurance, but I never did.  At about ten o’clock, after I must have slept for half an hour, all pain was suddenly gone.

Did I do too much too early?  Should I work from home?  Should I stay in bed all day?  Or was it just that lunch was too big?  I’m in a bit of a dilemma here.  I need to bulk up to be strong during chemotherapy, but I also want to take it easy on my digestion.  Most of the weight I’ve lost during the hospital stay seems to have come from my legs.  They look like sticks.  I should get back on my bike to get it back, but I’m not allowed.

I have eaten large amounts over the last seven days, but I’ve gained only minimally.  When your body is used to maintaining its weight, it’s not easy to make it suddenly gain weight.  A friend suggested buying a women’s magazine and doing the opposite of what its diet pages recommend.  A valid point, but eating 500 kcal of cream yogurt right before going to bed is probably already close to the worst a dieter could do, and it doesn’t do me much good.

Sunday, October 6, 2019

Cold heart

I have often been accused of being emotionally challenged, of having no feelings or at least not knowing how to show them.  These accusations didn’t exactly miss their mark.  I’m not one for excessive enthusiasm or despair, and I don’t like to get carried away.  I don’t worry about what’s outside my control.  The only time I get nervous is when I speak without good preparation in front of an audience.  This is why I asked few questions during scientific talks.

Sometimes I wish I were more in touch with my feelings, more emotionally alert.  There can be no doubt that I’ve messed up many interactions and missed out on a few good relationships because of my insensitivity.  Some encounters resolved themselves years later to have been much more than I had perceived in them.  I’ve often wondered if there was anything I could do to develop emotional skills.  What does it take to become less robotic and more empathetic?

This question is now moot.  In this Tour de Cancer, the tables seem to have turned.  I’m cool when no one expects me to, and that’s a good thing.  I think I cope better than average because of how I am.  During the initial diagnosis, the medic asked me if I needed emotional support.  She wasn’t talking about those docile animals that go viral when they try to board a plane but trained professionals, available to me at any time I might feel fate too heavy and needed to talk.  Thank you, I said, but I’m fine.

At the end of the consultation before the surgery, the surgeon asked me if I was nervous.  She emphasized that it wasn’t clear what would be done to me nor how my body might react to it.  I said no, not at all.  Instead of leaving it at this, I should have asked back if the surgeon was nervous.  After all, she’d have to perform an operation under conditions of uncertainty.  All I had to do was lie on the table, drugged, anesthetized, unable to notice or feel a thing.  When I’d wake up it would all be over and I’d know the result with a clarity that my imagination could never provide.  Why would I be nervous?

During chemotherapy, the questions and sincere offers will come again, but what’s there to talk about, really?  I have cancer.  That’s a fact.  In this I’m not special.  I’m one of millions.  A large number of doctors is taking care of me.  This reassures me.  I know the next months or even years are not going to be easy, and maybe not even successful, but this is no reason to get worked up, worried or freaked out about.  I cannot influence the outcome much except, I believe, by a positive outlook and placeboic optimism.  Worries have no place in my life.

In many ways, Flucha is the exact opposite of me.  She empathizes, sees herself in my situation, worries about what might come, afraid of what might I have to endure.  In addition, she has to shoulder most of the weight of taking care of household and children.  I haven’t been of much help during the last few weeks.  Now that my mom has returned back home, it’s all her, and it shows.

Flucha is frazzled, anxious and tense.  She takes care of everything, shopping, cooking, cleaning, feeding the children.  At the same time, her mind runs in circles, creating, analyzing and dismissing different worst-case scenarios.  She obsesses and frets.  I tell her to relax, take it easy, worry about what is (nothing much - surgery was successful, chemo hasn’t started yet) rather than what might be, but it’s of no use.  People don’t control their feelings like a machine.  It’s time I get better enough to at least help her in the house and give her some moments to herself, for her to find peace.  We will need all our strength.

Thursday, October 3, 2019

Best wishes

So far, very few people know what I’m going through.  With this blog, I might have revealed my battle with cancer to the world, but I have told hardly anyone about it, and the link is not obvious.  The blog hasn’t gone viral.  Readership is probably limited to those few close friends going back years and decades with whom I have shared the news and the blog’s URL.  They deserve to know and to have a chance to follow my journey – as closely as they choose.

At work, only my boss and HR know.  As my prolonged absence due to ill health is already causing concern and probably also speculation, I will let my colleagues know during group meeting next week.  I want to reassure them that I will try to be the same person at work that I’ve always been, doing my job with the same enthusiasm (though possibly not quite as much energy) as before.  I don’t want any special treatment.  For this, I go to the hospital.

Going public with tragic news means turning personal drama into everyone’s story. What the audience does with it is up to them.  I have no expectations.  The Guardian had an opinion piece today about the questionable merits of sadfishing, a term I hadn’t encountered before that is defined as “the posting of an emotional message on social media in an apparent attempt to attract sympathy or hook an audience”.  This is not what this is about.  The point of this blog is not to solicit pity or write a gripping narrative that makes you thirst for the next post.  Neither is it to elevate my ego with the number of page views or comments under a post.  The topic is too serious for this.

This blog has two main objectives.  The first, as with everything I write, is to keep a memory of things too precious to forget.  I try to be honest and unfiltered, with medical facts as well as my reactions, physical and emotional.  Writing the first ten posts or so gave me something to do after surgery.  It might be similarly useful during upcoming chemotherapeutic infusions.  The second is to share news and developments with friends without having to write the same email a dozen times.

This second point is behind today’s post.  From my friends, I got a dozen email replies to the initial news, each warmer and more heartfelt than the one before.  How do I respond to these emails?  What do I say to a dozen offers of support, to promised visits and the most unexpected advice?

Thank you, my friends!  As you’re thinking of me, I’m thinking of you.

Tuesday, October 1, 2019

Hitting a low

I had spent the weekend in great and possibly misguided optimism.  The last two days in the hospital were relaxing, pleasant and painless.  I was fed, rested in bed, read, and walked around the gardens.  I was thinking of returning to work and traveling.  There was no indication anywhere for any negativity.

The exit interview, if that’s what it’s called, with one of the surgeons took my spirits down a notch already.  She shook her head in pity when I asked about working and gave me a two-week sick note.  Then she grounded me for six weeks.  No air travel until November.  On the subject of sutures, stitches and tape, she was more positive.  No need for questions.  You don’t need this anymore, she said, ripping everything off.  The stitches will dissolve in due time.

Before the doctor came, a nutritionist stopped by.  No banned food, nothing wrong with a glass of wine every now and then, but you need to get your weight back, she said and handed me a brochure about foods rich in energy and protein.  This looked fair enough, eat lots, eat rich, but I should have seen the warning lights.  What she was proposing was very far from my regular diet.

Today, I was suffering.  The first full day at home was hard.  Though my mom took care of me, I had to do more than at the hospital, and at night I played with the children when they came home.  I also went to work for three meetings, which probably wasn’t the smartest move.  But the worst was eating.

I spent all day eating.  Well, that’s what I should have done.  What I did was spent all day trying to eat, but after a big breakfast I couldn’t fit much more.  My colon is only half as long as it used to be, my gallbladder is gone, and I’ve just been brought back up to a normal diet over the past four days.  Now suddenly I’m expected to stuff myself with six meals a day, with cream and sugar and chocolate and snacks, snacks, snacks.

I was stuffed all day.  My stomach was full, my gut confused.  Where’s this coming from all of a sudden?  I need to gain a good 10 kg before starting chemo.  How do you gain 10 kg?  This sounds absurd.  I sat at the table looking askance at a half-full plate of pasta and cream sauce.  I lie in bed feeling sorry for myself.  Whatever I did, wherever I hid, my mom came with little bowls of more, chocolate-covered nuts, biscuits, dried fruits.  I should be healing and recovering.  Instead, I spent all day digesting hard at the limit of my abilities.  I’m a wreck, stuffed, bulging, immobile, dispirited.

After one day only, I already feel like giving up.  What’s the point in all this?  Do I really need to stuff my face with crap to get healthy?  This just doesn’t sound right.  And what about my stomach?  It led a happy life, I think.  Then it was starved over nearly four days and carefully nursed back to the living.  Now it’s being assaulted as it never has.  This cannot be right.

I’ll give it another chance tomorrow.  The reading on the bathroom scale was so low this morning that even I got scared a little.  I need to put on weight.  But I need to do it in a way that’s compatible with who I am.  My body cannot change engrained habits from one moment to the next, or get used to nutritional chaos.  Tomorrow I’ll go for walks and try to get some motion in my system.  That should help with digestion and also with my mood.  The food will follow.