Surgery questions

Tomorrow I’ll be set free.  Unless I collapse tonight, all wounds open up or my reconstituted gut ruptures, I’ll walk out of the hospital tomorrow by 10.  This matches exactly the prediction made by the doctors right after the operation.  The nurses and carers have done a great job getting me there.  I’m grateful to them and glad that I’ve met their expectations.  What was extremely tough at the beginning has now turned into a cruise, as if I were rolling towards the easy finish of a difficult mountain stage, well behind the leaders but safely ahead of the broom wagon.

My belly, sliced open and stitched back together.

Before they let me go, a surgeon will update me on how things will continue, when I’ll have to come back, what I’ll have to look out for.  It’s good to receive advice.  It’s better yet to have questions ready and not think of them later and regret not having asked.  This is what I’d like to know:

• When can I go back to work?  Will I be held back in any way?  This is really the most important question to me.  Without deluding myself that this is possible, I’d like to have the life back that I had before.  Work is an important aspect.  I don’t want to waste time at home when no one else is there.
  → The doctor was rather suspicious about my going back to work.  Worse, she hinted at an extension of the sick note beyond the two weeks given.
• Can I travel for work?  How would it be perceived if I tried to reschedule consultations and appointments to be able to travel?  Travel is an important part of my work, and one that I like.  It keeps me fresh.  Treatment comes first, but how flexible can I be?
  → We didn't get to talk about treatment flexibility.  When the doctor grounded me for six weeks after the operation, there was no need to say more.
• Should I make changes to my diet?  What should and should I not eat?
  → Before the surgeon came, a nutritionist educated me about a diet rich in protein and energy.  I need to gain weight and am supposed to eat as richly as I can.  This will require dramatic adjustments.
• Can I expect my digestion to go back to normal?  When will this happen?
  → With time.  It all depends…
• How is my gut microbiome?  Has it suffered during the operation or the past week?  How can I get it back to its full beneficial diversity?
  → A good question, but I forgot to ask it.
• Should I make changes to my lifestyle?  When can I go running again?  When ride my bicycle?  Is there a limit to physical exercise, such as climbing the stairs to the ruin above Baden?
  → Physical activity is good, but I need to take it easy.  No bicycle for the moment.
• When can I expect to be as physically fit as I was before the operation?
  → A pointless question that I didn't ask.
• When will I regain my weight?  Since shortly before the diagnosis, I’ve dropped a good ten per cent.  This might be all right were I fully fit, but to fight cancer, I might need a bit more beef.
  → These were exactly the nutritionist's concerns.
• What might happen that should worry me?  Are there warning signals if further recuperation stalls?
  → Pain, fever, the usual.
• Do the stitches holding the cut in my belly need to be removed?  When will this be done?  How do I care for the scar lest it morph into something resembling an ugly zipper?
  → The stitches will dissolve.  I forgot to ask about how to care for the scar.

This post will be adapted as I get answers.  The oncology questions might go into their own post at some later point.  This blog is fluid.

Relaxing time

The weekend shapes up very differently to the days before.  It’s quite a bit calmer.  There are fewer doctors around and less activity.  When the morning rounds are done, the patients that don’t require constant care are on their own.  Freed of Fred and all outward frills of a patient beside the wristband and my shameful sweatpants, I can go wherever I please and do what I like.

It’s important to be back for lunch at half past eleven and the inspection that comes with it.  Blood pressure, temperature, heart rate, oxygen saturation.  All good, no pain, no worries.  After lunch I rest for half an hour to help with digestion and read or listen to podcasts.  Afterwards, I write or read more.  Visitors arrive after 1 pm.  The entire afternoon is to my own disposal, with no obligations and nothing to do.  I could almost get used to it.

I enjoy it the most because this afternoon, the bag covering the hole into my abdomen was removed.  The hole had closed by itself, healed.  Only a small patch of gauze reminds me that I was carrying a bottle with red-orange liquid with me not too long ago.  At the same time, the tape covering the long vertical cut on my belly was replaced on my express demand.

When this was done a day earlier, I had lounged as if on a Caribbean cruise, my upper body slightly raised by the magic of the adjustable hospital bed.  For this decadence I paid dearly because the tape followed the shape of my body in this position, and held it there.  For a day, I walked like the semicolon that I am.

Now I’m a normal person enjoying two relaxing days off.  I’m normal in all respects besides the microscopic cancer cells that still suffuse my belly.  They are still there, they are growing, and they are evil.  I don’t forget about them, but since I can’t do anything about them right now, I don’t think about them either.  They will be dealt with later.

Hard work

Around the operation, I didn’t eat any food for nearly 90 hours.  For a good ten hours before I was rolled into the anesthesia room and 75 hours afterwards, all that entered my body was saline solution through two intravenous drips and sometimes further solutions with painkillers.  Towards the end of this enforced fast, I was allowed still mineral water, first safely spaced individual sips, then larger gulps.  My stomach, an innocent bystander not only in the surgery but also in the entire colon cancer tour, must have been empty like a teaching model.

Two mornings ago, I found two metal pots on my bedside table.  One was filled with coffee, the other with warm milk.  This was better than water but far from my idea of breakfast.  Drinking up took me until the coffee was cold.  My insides couldn’t cope with it faster, and my belly told me to stop, but then came lunch and then dinner, each a bit richer than the meal before.

I drank and ate it all and suffered for it.  I struggled with my gut, fought against pain and enabled digestion.  This was hard work.  I stayed in bed for most of the day, in similar exhaustion to the day after the operation.

Eating has become a deliberate process.  It takes hours.  I start by surveying the food, choosing which item I would like to ingest first.  What might go down the easiest?  What might cause the least trouble?  I eat in slow, disparate bites, every single one a decision I make at the right time.  After the first bite, digestion has to be kept under constant vigilant surveillance.  Output tends to be as fast and furious as input is slow and controlled.

For a moment in the evening I was struck with how little progress I had made today.  I feared I might have slid back.  I had walked much less than the days before.  I had ventured outside the main building but had to return quickly because Fred didn’t like the bumpy ground that messed with the drop sensor on the IV drip.  The pumps beeped in panic with every second step I took.  But maybe things aren’t quite as bleak as they appear.

• I ate proper solid food, little bits of meat chops and biscuits – besides plenty of liquid, purée and goo. 
• I got rid of the drainage out of my belly, and the curious bag taped to the opening stopped collecting any liquid in the afternoon.  The healing is clearly underway.
• I was relieved of the intravenous drip at night.  If I go down to the cafeteria now, I might be mistaken for a visitor, were it not for the white wristband with my name and an identifying barcode on it and the blue-grey sweatpants I bought last Saturday in a moment of weakness because I couldn’t see myself in khakis in a hospital for a week.

My food was ramped up from a milky coffee two mornings ago over lunch comprising four containers of liquids of different thicknesses to the next lunch of pureed meat and cabbage cooked to death.  Dinner tonight was a real meal, with meat, mash, a dessert and all.  I’ve paid for this speedy progression.  I’ve also not gained any weight.  Getting my digestion going and keeping it going against the protestations from hurt parties inside my belly took a lot of energy, but now things are rolling.  The weekend should be a real pleasure, relaxing times in a friendly environment.  On Monday, I will be released.

Convalescence

It’s silly to speak of convalescence when the cancer is raging unimpeded.  All transformed cells that survived the surgery on Monday, microscopic chunks invisible to the naked eye and thus too small to be removed by knife and individual cells floating around aimlessly are still around and are as menacing as ever.  The cancer has not been stopped.  The cells will keep growing and do the damage that all cancers eventually do.  There is only one outcome.

But I’ve had major growth removed and the remaining bits of my gut reconnected successfully.  The healing process has started and is progressing well.  This morning, I was given a pot of coffee and hot milk, the first food in more than three days.  In four to six weeks I should be strong enough for the next stage on this tour.  That’s when the cancer will be attacked at the source, with the goal to eliminate or subdue all malignant cells.

Since Monday, I’ve been feeding on infusions and small amounts of mineral water.  This will not get me back on my feet.  On the other hand, my reconstituted gut is weak, recently stitched together in places that had nothing to do with each other before, and, at least at the beginning, not ready for more.  Every time I increase input - drinking more than one sip at a time, drinking weak herbal tea brewed with tepid water, drinking milky coffee - my gut revolts a little bit.  Like me, it is lazy and likes to rest, left in peace and comfort.

Shortly after waking up from surgery.

I am my gut’s carer.  I tell it to get up and move, to exercise, to get its juices flowing.  In contrast to my own carer, I’m suffering for it.  I feel occasional stinging pain that moves with the motions of the intestines, as if things were ripping apart inside.  Since the surgeon told me that it’s the scraping of the intestines on the extensively wounded peritoneum, I can deal with this much better.  This pain is just pain, not a harbinger of worse to come.

Yesterday I walked 2400 steps.  I counted every single one.  The hospital corridor is 170 steps long.  My last trip at night comprised three laps.  I was exhausted afterwards but happy.  My goal for today is 5000 steps.  If I spend more time outside bed than inside it, by walking the corridor and sitting on the table reading or writing, my body should see the direction of this tour.  It’s a tour of convalescence, of hope, of survival.

Live strong

Despite wearing my LIVESTRONG wristband, I can feel the difference between me and Lance Armstrong all the time.  When the nurse leaves me with a little plastic contraption to exercise my lungs, I do it only when she’s around.  Lance would be glued to this thing, thinking of L’Alpe d’Huez and Arcalis with every inhalation.  When the physiotherapist encourages me to move and I trundle along the hospital corridor, Lance would have already badgered her into providing an exercise bicycle to train on.  He was strong.  I’m exhausted and weak.

A reminder that suffering is a part of success.

On Monday morning, I was laproscopied.  The doctors liked what they saw but didn’t think it was in the right place.  They stopped the microsurgery nonsense and made a big vertical cut in my belly, almost from the chin to my balls, and took out without much hesitation:

• Half of my colon with a bulging tumor and a lot of surrounding tissue, including lymph nodes in various states of contamination.
• My appendix – for being in the wrong place at the wrong time.
• My gallbladder – just so, because it’s of no use and might be a nuisance, should more surgery be necessary later on.
• A lot of growth on my peritoneum.
• A network of subcutaneous fat called the omentum.

This is a rather long shopping list, and yet I got away easily.  Kidneys, lungs and liver remained unscathed, though the liver got flipped around a fair bit to exclude anything malignant hiding behind.  I still have my spleen, bladder and pancreas.  And, in contrast to Lance Armstrong, I kept both testicles.

I was warned about general anesthesia, weird feelings falling asleep, vivid dreams that can be directed by will power ahead of time, and a long period of delirious confusion during wake up.  I experienced none of this.  Anesthesia was like sleeping, going in and out of it at the switch of a button.  The time lost sleeping was nothing but blackness.

Over the last two days, I’ve tried to recover.  Progress cannot be denied.  I sleep well at night, suffer no pain, and can stand up and walk for brief periods of time.  The latter surprises me the most.  What I’m I doing walking around a day after the operation? This is not my idea of coming back from the dead.

This is why I was mighty surprised when a carer came this morning and asked me to get up.  I had just been operated on and was feeling rather weak.  She insisted.  You need to get your circulation going.  Lying around isn’t doing you much good by itself, she said.  The first time up from my comfortable hospital bed was painful, full of movements my body wasn’t ready for, with skin stretching where fresh sutures were holding things rather rigidly.  It would have been easy and was very tempting to fall back onto the bed and doze, but carers can be insistent.  By the end of the afternoon, I had walked down the corridor all the way to the end and then back to the other one all by myself, accompanied only by Fred, the five-wheeled stand holding my infusions and pumps.

The surgeon told me that the operation couldn’t have gone better, and that my prospect might be slightly better than before.  A full histological examination of the removed tissue is required to know what’s really going on, but all macroscopic lesions, all visible cancerous growths are gone.  Chemotherapy can now target what remains, microscopic evil of much greater danger, with full force.  It’s not going to be pretty, and maybe I’ll be thinking back to the operation with fondness.  It was an easy ride, the first warm-up in the mountains maybe but not a stage in the high Alps yet.

Day zero

Eleven days after my diagnosis of advanced colon cancer, I have already turned into a different person.  This is very hard to make sense of.  Two weeks ago, I was as healthy a person as I knew, a bit short of breath when climbing stairs, suffering as if I were at 1400 m when playing football all out, and a bit slower on the bike than in the past, but without any troubles or problems.  The stings from my belly that would pierce me occasionally drove me to the doctor, but for the rest of my symptoms, I blamed age.

Now, two weeks later, I’m a sick man, and I feel it.  The pain from my colon is almost constant and sometimes insufferable.  Sleeping is difficult because I’m only comfortable on my back.  Last night, I spent quite a bit of time finding an alternative position, slowly rolling left and right, harvesting pain in the process.  I didn’t arrive anywhere happy.  Turning itself hurt.  I ended up back on my back, sleeping without moving.

Today we went for a hike up to the castle on the right side of the Limmat.  The stairs are steep and exposed, up a plate of Jurassic limestone that sticks out from the surrounding hills like a knife edge.  After an hour of climbing, we reached the castle and enjoyed ice cream and the view.  The walk continued along the hill above Wettingen and took a good three hours to complete.  The girl walked all the way.  The boy was also quite active.  It was a beautiful day, with sadness just below the surface.  When will we have another day like this as a happy family?

When I picked my mom up from the train station late tonight, my state had further deteriorated.  Maybe it was the exertion of a day of walking.  Pain slowed down my departure from home and delayed my arrival at the station.  I was walking like a sick man, holding on to the right side of my abdomen to contain the agony and sometimes to walls, pillars or posts on the way for support.  My mom couldn’t hide her shock when she saw me stagger down the platform towards her.

On the right side of my abdomen was a large, slightly protruding, ovoid mass, hard to the touch.  If that was the tumor, how had it grown like this in less than two weeks?  If it was the result of the tumor blocking the passage through my colon, the short-term worst-case scenario outlined by the surgeon during our consultation on Friday, would I die of it tonight?  It seemed like a distinct possibility, and my planned hospitalization the next day had something of a rescue to it.

It’s possible that today was the last day of the life that I knew.  Worry-free Sundays out with the family, walks and laughter, exploring and discovery, these might be things of the past if things go bad tomorrow.  And even if they go well, how will I keep my spirits up in a struggle that seems to allow for one outcome only?

Tomorrow morning before everyone else gets up, I will check myself into the hospital where the operating table will be ready for me.  In the afternoon I might wake up and find myself without half a colon, maybe missing other parts as well.  Harsh as it sounds, I think this would be a good thing.  It would mean that the surgeons considered it helpful to remove the primary tumor.  I can’t get rid of this thing soon enough, to feel somewhat normal again.  I won’t delude myself into thinking that things are in fact normal.  The race has only started.  What will it take for me to survive?

Knife therapy

A Spanish colleague at work had earlier this week spoken about his impressions of the Swiss health system.  Whatever the problem, whyever you’re seen by a doctor, a blood sample will be taken.  Common cold?  Blood sample.  Twisted ankle?  Blood sample.  Headache?  Blood sample.  A blood sample is the answer to everything, and impossible to avoid.  It’s probably also a good way for doctors to make money with very little effort.

Yesterday, I had my fourth or fifth blood sample taken during the current miserable tour.  Today, it turned out no one had bothered to check my blood type.  This was remedied shortly before I left the hospital at 5.  How much blood do you need to get the blood type right?  The technician filled four vials.

But back to the beginning.  The surgical consultation early in the afternoon was less than satisfying because not much was clear.  The two main options with my diagnosis are chemotherapy and surgery or surgery and chemotherapy.  The order seemed a matter of taste.  Doing chemotherapy first might weaken the body too much for surgery.  Doing surgery first might weaken the body too much for chemotherapy.

How do you decide between these options?  It was easy for me.  I want the tumor gone.  The primary tumor presents the risk of blocking my colon and leaving my belly full of half-cooked shit with no way out.  I’m not happy with this risk.  The tumor needs to go.

The surgeon accepted this reasoning and was probably not thinking very differently herself.  "Have you got time for more consultations later this afternoon", she asked.  "I have a free slot for knife therapy on Monday."  After a short think, I told her I was in.

Surgery should have a clear goal.  You don’t cut a person open just so.  My case is not that easy.  Surgery will start out with a visual inspection (by remote controlled camera) of my ventral cavity.  The goal is to identify tumors too small to be picked up by the PET-CT and get the best possible impression of what’s growing inside me, but that’s not really surgery.  It’s just a tube inserted through a hole poked into my belly button, with a few more holes for accessory tools.

Based on what the surgeons see, surgery might start afterwards.  And based on what the surgeon said, it sounded as if they’d juggle the scalpels and see which cut comes most natural.  They might take out the tumor, if that’s unlikely to cause complications.  With it, they’d also take out the surrounding lymph nodes.  They might also remove the peritoneal carcinomas, if there are only as few as were visible during the PET-CT.  If the entire peritoneum is covered as if with slime from a horror movie, they won’t touch it.  They might decide not to do surgery at all and pass my case on to the University Hospital in Zurich for HIPEC, if that seems sensible.  The surgeon wasn’t too convinced of this option.  Or they might be totally repelled by what they see and not touch me at all before doing chemotherapy to shrink what’s grown too much.

This is a lot of options.  Some might be better than others but even that’s hard to tell.  It’s just not clear what would be the best situation, apart from not being in this situation in the first place.  Anyway, I won’t have a say in this as I’ll be in general anesthesia.  When I wake up on Monday afternoon, I’ll have to check my body to see what’s still there and how the knives have fallen.