My Cancer Diary

On July 18, 2008, I was diagnosed with cancer in the lymph gland on the right side of my throat. This is my diary of whatever happened next. There are many cancer diaries on the web, just as there are many people in the world. But this cancer blog, and this life, is mine.

The time since my diagnosis and the operation has been very difficult for me and my family. It’s been an extraordinary time, filled with hopes as much as fears. Expressing these emotions on this page, and simply chronicling the events as they happen, have been my way of coming to terms with what I’m going through. Sharing it with you, and getting your comments has been a great source of comfort. You have cheered us up, given invaluable advice, and encouraged us to go on. I’m immensely grateful. Having cancer is terrible, but sharing the experience has made it an easier burden to carry. Thank you all!!!

I’ll write as often as I can.

yours always,

Erik Ringmar
Wednesday, July 16, 2008 Erik No comments

I’m going back to the doctor again.  I have a strange lump on my neck, a swollen lymph node.  I look like a snake with a half-digested mouse half-way down the gullet.  The symptoms appeared right after my pneumonia in the spring and it’s most likely the result of an over-worked immune system.  Friday last week the doctor put a needle in my throat and took out three small samples that he’s been cultivating.  Yes, they are testing it for cancer too.  “Malignant tumors” and all that.  Of course I’m worried.

I had a lot of health issues this past half-year: a heart scare, pneumonia, and now this.  It wouldn’t be so bad if I felt more robust, stronger.  Maybe it’s living abroad in a strange, far-away, country that makes me feel so vulnerable.  Every slip of the feet feels like a fall; every little thing that goes wrong is a premonition of doom.

Yes, I’m being dramatic.  It runs in the family.  Swedes are more dramatic than people think.  I’ll keep you updated.

Thursday, July 17, 2008 Erik No comments

The first thing was the weather: a typhoon hit Taiwan today and our town was flooded.  We put Rima and Yrsa in the car and drove off through the deluge.  Diane let me off at the hospital.  I was hoping the clinic would be cancelled because of the rain.  I was going to run away from my appointment: come back to Diane and the kids and tell them the doctor didn’t show up because of the weather.  But instead I waited.  Pacing around the hospital.  Eventually no 28 came up.

I knew something was wrong when I caught a glimpse of the pathology report on the doctor’s computer.  It was long, long.  The doctor was nervously trying to copy and paste it onto a word file.  Eventually he highlighted some words on the screen.  “You see,” he said.  I did see but I didn’t understand the Latin terminology.  “Those cells are cancerous.”  “You have cancer.”

I called Diane in  a haze.  She wailed back at me.  Before long she was coming up the escalator, with Yrsa and Rima in tow.  Completely drenched.  A nice nurse gave them large sheets to dry themselves off.  A complete stranger got the kids milk, even warmed it up for them.

The tumor is large and deep.  We had to go somewhere, said the doctor.  Some hospital somewhere.  He told us the name but we didn’t understand.  I tried calling my friend Zhiben but I got the digits all mixed up.  The doctor eventually took charge and there was Zhiben on the phone. Yes, I’m supposed to go to Taiwan University’s cancer clinic.  They can’t do anything more for me here in Xinzhu.

We drove home through the continuing rain.  Met my two oldest.  “Yes, it’s the worst possible news.  Pappa has cancer.”  Then we all cried together.  Held each other and cried.

Diane and I drove in to work later in the afternoon.  Met Zhiben and my friend Meihong.  They called up the hospital in Taipei.  I have an appointment with a cancer specialist on Tuesday.  “These are the best doctors in Taiwan,” said my colleauges.  “They’ll take out your tumor and you’ll be OK.”  “I know you worry, but don’t worry too much.”

Friday, July 18, 2008 Erik No comments

Today is the deadline for Diane’s dissertation.  She’s been at it for 10 years.  Almost as long as we’ve known each other.  And the kids have never had a mother who isn’t typing away at what in our house is known as the blahonga (from the expression “blahonga, blahonga, blahonga,” frequently used during sermons by the village preacher in the Swedish cult cartoon series Assar).

Much of my advice to prospective PhD students — “don’t do it! don’t do it!” — comes from observing what Diane’s been going through.  She’s worn out three supervisors in the process — one very lecherous, one half-dead and then completely dead, one friendly enough but also a total coward.

So far this summer, the kids have been sitting at home watching their mother type.  But we’re going on a mini-vacation tomorrow (to eastern and southern Taiwan) and Diane is not allowed to bring the computer.

Friday, July 18, 2008 Erik No comments

The US isn’t, it turns out, the best country in the world.  It’s only at 12th place (and 42nd in terms of life expectancy).  This according to a “human development index” devised by Nobel prize winning economist Amartya Sen.  And what country is number 1?  Well, Sweden of course.  Where else?

In one of the lectures I give on political economy, I develop a similar point.  With welfare and health care and education and support for families and children, Sweden is indeed Paradise on Earth.  The only thing about paradise, however, is that it’s so damn boring.  You get fed up playing harp all day long.  Who wants to live there?  I’m far happier here in chaotic, and less than perfect, East Asia.

Btw, isn’t it fishy that the Swedes gave Amartya Sen a Nobel Prize for discovering that Sweden is the best country in the world?

Saturday, July 19, 2008 Erik No comments

bananaI always thought I was scared of dying.  But I’m not.  Perhaps my reaction is simply delayed, but somehow I don’t think so.  What terrifies you is not to know where the danger is coming from.  But once you’ve actually honed in on the bastard, there is no fear, only determination.  I’m Action Man in a shoot out.

When I was 19 I was on a boat going from Shimonoseki in southern Japan to Pusan in Korea.  Half way across the Korean straights a typhoon caught up with us.  The old ferry was rocking and creaking; it started leaking from the roof; a man fell overboard and was never hear from again.  Of course we all thought our last moment had come.  I always hate rocky boat trips, but this one was different.  I was strangely calm and determined.

There were a few foreigners on the boat.  At first we hadn’t said a word to each other — each one alone with our Oriental experiences.  But now we all gathered in the hull of the ship and started telling the stories of our lives.  I had a box of bananas with me that I intended to sell on the black market in Korea — that was a common way to make money for foreign travelers back then — and I started sharing the bananas around.  We told our stories, ate our bananas, got sea sick and threw up.  Very much out of character, I was the one keeping everybody else in a reasonably positive mood.

Eventually the boat turned around.  The weather improved right away and before long we were back in Japan.  Us foreigners went into our separate experiences again and when leaving the boat we hardly even said goodbye to each other.  Good to know, I thought at the time, good to know this is how I react if it’s really, really serious.

Saturday, July 19, 2008 Erik No comments

One of the big questions is whether the lymph node tumor is a primary cancer or a metastasis.  If it’s primary, this is where it’s originated.  Taking it away would also remove my cancer.  If it’s a metastasis it comes from somewhere else.  Even if this cancer is removed, there is more cancer that needs treatment.   Obvious a primary cancer is far better than a metastasis.

My sister Ebba emails me to say that cancers in the lymph nodes usually are a result of a metastasis.  I guess she’s been Googling.  I always try to avoid random information like that.  I convey the message to Diane and we cry some more.

Diane decides to counter-Google (I’m too scared to).  She digs up some information which says that a metastasis in the lymph nodes can be a disguised blessing.  Ovarian cancer in women, for example, have few symptoms and it is only when they move to the lymph node that they are discovered and successfully can be treated.  Maybe I’ll be a case like that.  Seizing on that possibility, we start fantasizing regarding fast cures and many more years together.

The tumor is bulging out on the neck under my right cheek.  I feel I could just dig into it with my nails and rip it out.

Saturday, July 19, 2008 Erik No comments

We’ve spent the weekend in Hualien on the eastern coast of Taiwan.  It’s a trip we’ve been planning for a long time.  At first I didn’t want to go but then I realized it is the best thing imaginable under the circumstances.  We are staying in a very nice large hotel with a pool.  We can see the Pacific Ocean from our window and there is a breathtaking view of the mountains too.  We eat buffets.  We go swimming.  We relax together.

Diane and I are on the bed and Saga stays around.  We talk about all the good times we’ve had.  I try to talk about the brevity and fragility of it all.  Life is here one day and then gone for ever.  Seize the day!  All the three of us start crying.  Poor baby.  Saga is our oldest but still too young for this kind of stuff.  Only 12.

“Are you OK?” Beata asks me in the pool.  “No, Beata, I’m not OK.  But I’ll be OK when the doctors in Taipei help me.  Of course I’ll be OK.”  Beata is younger, 10, and she worries so much about everything.  She doesn’t like changes of any kind.  I try not to talk to her too bluntly.  Sounding upbeat, I almost believe it myself.

Yrsa I haven’t talked to much yet.  We had a great time traveling together only two weeks ago, but here in Hualien she is mainly playing with her Chinese friend.  She is running around like a fury.  I’ll talk to her later.

Rima is 4.  There is no point to talking to her.  She is blissful in her naughty four-year-old-hood.

This weekend was just what we needed.  It may have been the last few days of normal family life before all hell breaks lose.

Sunday, July 20, 2008 Erik No comments

“I want to die,” I’m thinking.  Right at this moment.  With my wife beside me on the bed; with the kids playing.  A needle in my arm to make me dream and then quietly slip away.   I would be so, so happy.  My life would be complete.  It would be the happiest day of my life.

“Don’t go, baby!” Diane says.  “What about us?  Don’t be so selfish.  We need you around.”

“Of course,” I tell her.  “Of course.  I’m sorry.  I won’t think like that again.”

Sunday, July 20, 2008 Erik No comments

As long as I keep on talking I’ll be alright.  The Grim Reaper himself will want to hear the end of my story and he’ll delay the execution of his task.  It worked for Scheherazade after all.  Telling one story after another, she eventually saved her life.  I’ll be the Scheherazade of the blogosphere.  I’ll write and write and write.  You’ll never get me.

Having cancer is a great topic for a blogger.  Finally something worthwhile to write about, instead of providing stale comments on something some American politician said on the news.  Sex and death are the only real topics after all, the only topics worth bothering with.  Too bad that what’s good for a writer is so terrible for the human being concerned.  Life and art are always at war with each other.  Ars longa, vita brevis.  Of course I’d much rather live; much rather be a human being than a writer.

Sunday, July 20, 2008 Erik No comments

I sleep strangely well.  I close my eyes and happy images immediately fill my head.  It’s like a dream machine that snaps into action.  Like a fairy godmother sprinkling pixie dust in my eyes.  Eventually the images settle on a story-line, and I’m off in a dream.  It’s waking up that’s the difficult part.  That’s when the nightmare starts.

Monday, July 21, 2008 Erik No comments

We just came back from professor Ko at the big university hospital in Taipei.  I have some good news and some bad news.  No, actually the news is almost all good!!!

The bad news first: there is indeed a cancer in the lymph node, no doubt about it.  And it’s a metastasis, meaning that the lymph node isn’t its origin.  The real cancer is coming from somewhere else.  The task is to take out the lymph node but also to find the real cancer.

And the good news: taking out the lymph node is no big deal.  Yes, it’s big and deep and the jugular which supplies blood to the brain is running just next to it, but never mind.  Professor Ko does this operation all the time, with his left hand tied behind his back and his eyes blindfolded.  I’ll have a big ugly Frankenstein’s monster scar on my neck and I’ll only be able to eat ice cream for a month, but that’s a small price to pay.

So where is the real cancer?  Looking at the cell samples, said professor Ko, it seems to be coming from the mouth somewhere, but the CT scan doesn’t indicate anything unusual.  Like a car mechanic looking for the fault in an engine, professor Ko began rooting around for it.  First in my tonsils and gums, then in my vocal cords and finally he sent little painful probes down behind my nose.  “It must be here somewhere, but I can’t see anything.”

There is a possibility that one of my tonsils is slightly enlarged.  If so, it is a cancer of the tonsil.  But they won’t know for sure until they take it out and look at it.  It could also be that the cancer is microscopic in size and that it can’t be detected through normal tests.  Microscopic cancers are good.  My kind of cancers.  It’s the large inoperable ones I don’t like.

Professor Ko has the most amazing hands.  Fingers long and strong like a basketball player’s or a pianist’s.  As a patient you realize immediately that you are, literally, in good hands.  He’ll pull me out of this nightmare, I’m sure of it.

Monday, July 21, 2008 Erik No comments

I’m off to the doctors in Taipei in a few hours.  I have a 3 o’clock PM appointment with a cancer doctor at National Taiwan University Hospital who is an expert on lymph nodes.  In Taiwan the top 1 % of students go to Med School, and the 1 % of them end up teaching at NTU hospital.  I couldn’t be better looked after.

I have to remember that more information is my best friend.  Even if the information is bad, it’s better to know than not to know.  It’s uncertainty more than anything that makes you worry.  This insight doesn’t come easily to me.  My instinct is always to hold my ears with my hands and repeat “I’m not listening, I’m not listening, I’m not listening” as loudly as I can.

But we can’t go on like this.  Since we still know next to nothing our thoughts are all over the place; torn by hopes, friendly encouragements, Google searches, and the terrifying feeling in the gut that I’ll never get out of this one alive.  Only information can put an end to this madness.

Monday, July 21, 2008 Erik No comments

This is the report I got from the doctor who did the biopsy of the cells in my lymph node:

It doesn’t make a lot of sense to me but some of it seems fairly encouraging.  Perhaps you know who to read these things?

I never understood why some people insist on the confidentiality of their medical records.  Our bodies are the least private aspects of ourselves.  After all, we all have the same kind of body parts — lungs, hearts, knees, ears and all the rest of it.  Sooner or later we also all succumb to the same illnesses.

Monday, July 21, 2008 Erik No comments

My angel, my Diane.  I’ve become so totally dependent on her.  I constantly need her beside me.  We sleep all snuggled up and in the day time there is always one part of my body that touches her.  If she’s out of my sight for even a second, I immediately start worrying.  I draw life from her.  The warmth of her body enters mine and fills me up.  As long as she’s there, I’ll be alright.  Even if I’m not alright, I’ll be alright.

Monday, July 21, 2008 Erik No comments

I’m going into the hospital for the operation and it’s not quite clear what’s going to happen after that.  I’d better hand over as much responsibility as possible to Diane and the kids.  I’ve taught Beata how to wash clothes and hang them up; I’ve briefed Diane on how to update my web pages and on assorted money matters.

The question remaining concerned access codes to the internet.  I used the same master password for practically all web sites and I’ve used the same one for years.  It’s literally the keys to the kingdom.  Diane has always known the password.  But I thought it would be a good idea to let Saga know.  I asked her to sit down and we talked about it.  With some solemnity I told her the password.  Poor things.  She immediately realized the gravity of the situation and the implications of what I was doing.  She was too shook up; she didn’t pay attention.  When I asked her the following morning, she didn’t remember the password at all.

Monday, July 21, 2008 Erik No comments

This, in short, seems to be the story: I have a cancer somewhere in my mouth, but it’s still at such an early stage that it can’t be detected through normal tests.  I certainly don’t have any symptoms, not even a sore throat. The pneumonia I had in the spring weakened my immune system and as a result a few cancer cells attacked the lymph node on the right side of my neck and started to grow.

Under the circumstances this may have been an incredible stroke of luck: if the lymph node hadn’t reacted, there wouldn’t have been any indications of a problem and the original cancer would have been left undetected.  God knows when it would have been discovered, how big it would have been by then, and how lousy I would have felt.  Thanks to my lymph node, the original cancer has been discovered even before it can be discovered.

This is the story as I now understand it.  I am indeed a doctor, but don’t take medical advice from a holder of a PhD in political science :-).  Of course there may be more twists and turns to this plot — and I still have an operation to go through, together with chemotherapy and all that — but it’s starting to look like a very lucky escape.

Tuesday, July 22, 2008 Erik No comments

It looks like I’ll be admitted to the hospital already on Thursday. Oh no, that’s tomorrow!  They want me around for a day for various tests, including an MRI, and then the operation will take place on Friday (the 25th).  No, I’m not nervous about it.  I’m really, really excited.

Apparently post-op care in Taiwan is largely the responsibility of family members.  There are four patients to each room, but many, many more relatives running around with bed pans, noodle bowls and wet towels.  It sounds like an exotic experience, but also maybe something I won’t quite be in the mood for.  You can get a single room too, but you have to pay extra, and they might not be available anyway.

Another rumor: in Taiwan they don’t seem to be keen on giving out a lot of post-op drugs.  I’m not big on recreational drug use, but I’m all in favor of post-op morphine.  Maybe a student who could get me something off the street?  I’ve heard stories about pretty potent medication peddled in Taipei nightclubs  (Only joking).

I hate waking up after an operation.  You’re submerged in this enormous ocean, you see the surface above you, and you struggle to reach it.  You think you can’t make it; you known you must try harder, but you can’t quite get there.  Eventually you pass out, wake up half an our later and the struggle for air and life begins again.  “Yeah,” says Diane, “but you are a much better swimmer now than last time around.”  That’s true, I’ve been swimming regularly for the past year.  Today I’m comfortable under water.

But none of this is important.  This is all in the normal course of things.  These are regular worries and normal pains.  I don’t mind regular worries and pains, it’s the dying ones I object to.

Tuesday, July 22, 2008 Erik No comments

Friends insist that I should get a second opinion.  In theory, that’s no doubt a good idea.  The fact that NTU hospital gave me such a positive diagnosis — well, under the circumstances — is not itself a reason not to ask for another verdict.  But I really trust professor Ko.  He is very clearly the right man for this job.

I’m all for freedom of choice but the problem is that freedom of choice presupposes that you have full information.  You can choose between having a burger or noodles for lunch, but you can’t properly choose between one doctor and another.  You have to be a doctor yourself in order to make that choice.  What happens instead is that people are suaded by the nice sofas, or lack thereof, in the waiting rooms or the smile of a pretty nurse.  But that’s no way to make a medical decision.

This is why I’m against market solutions in health care.  I’m very happy to let people who have all the information make decisions for me.  I’ll stick to making choices about what to eat for lunch.

Wednesday, July 23, 2008 Erik No comments

I’ve packed my bag.  Toothbrush, underwear, a few T-shirts, the laptop, a book about the Victorian fascination with classical Greece, another book about why European art has so many pictures of naked people and Chinese art has none.  I don’t know what mood I’ll be in after I wake up, but it’s good to be prepared.

We are leaving at 9.  Today is for tests and tomorrow is the operation.  My friend Zhiben is helping to set me up, and Diane is staying with me all the way through.  Our two oldest daughters are off with Cindy, a good friend from work, and the two youngest are with Lou laoshi, a lovely teacher at their kindergarten.

If everything goes well — and it will — I’ll be back in a week. There is no wifi in the hospital, but maybe Diane can sneak off and post some updates.

I explain to the children about the operation, about anaesthesia, about the doctor who will take out the cancer in my neck.  “Mamma and pappa won’t come home tonight, but be good girls, OK.”  They all nod very gravely and promise to behave.  Our daughters are often hysterical on regular days, but when something serious happens they are both patient and brave.

“I know Anastasia will work,” says Yrsa after a while.  “That’s such a terribly boring movie.  It always puts me to sleep.”

Thursday, July 24, 2008 Erik No comments

presidential palaceCan you believe it, the National Taiwan University Hospital has free wifi for patients in every room!  I can live-blog from my bed side.  In fact, I could do a live web cam of the operation itself.  Or at least of Diane biting her nails while it’s happening.

I got a single room in the end.  On the sixth floor in the throat ward.  There is a bed for me, a sofa for Diane, two armchairs, my own bathroom and toilet.  And best of all: there is a stunning view of Taipei from my window.  I can see the palm-lined boulevards outside the presidential palace, the foreign ministry, and in the far distance the glorious Taiwanese mountains.

I started at 11 this morning by registering and giving blood and urine samples, EKG and chest x-ray.  After that I could eat for the first time in 12 hours.  Nice.  Not least because they have an entire food street down in the hospital’s basement.  In fact, it’s more like a shopping mall with book shops, clothes and shoe shops, a grocery store and a 7-Eleven.  And it’s full of normal people, not just sad-looking patients.

The friendly nurse in charge understands my broken Chinese and she told us all about the after-care.  I’ll have a tube stuck into my neck which they’ll tap for blood and fluids on a regular basis.  She also gave me a pain chart with faces ranging from really happy to really unhappy.  If I’m too much out of it to talk, I can just point to one of the faces and they’ll crank up the volume on the pain killer.

The anaesthesia doctor stopped by.  He assured me a happy sleep and a pleasant recovery.  Two of professor Ko’s assistants also checked me out.  They talk with a lot of reverence about their professor.  I’ll have an MRI — magnetic resounance imaging — later this evening.  That’s when we’re all hoping to find the original cancer.

Thursday, July 24, 2008 Erik No comments

Hello everyone. Erik went into the operation at 10:30 this morning and it took until 3:30pm for the doctor to finish. They showed me what they took out when I went to see him in the recovery room.  It looked like a bunch of grapes.  Yuk!  Erik is feeling very rough now, but also glad to have it over with. Next week we will get the pathology report. At 9:00 pm he will able to drink some water, and they will also give him more pain relief.  Thanks everyone for your kind words and help.

Thursday, July 24, 2008 Erik No comments

We just woke up.  Slept well enough, snuggled up on Diane’s sofa.  It’s a sunny day and a very lush Taipei is steaming under our window.  We could be on an exciting tropical vacation except for the friendly nurse who just reminded me that this is OD, Operation Day.

I can’t eat or even drink this morning, only brush my teeth.  How many times do you have to brush your teeth before it adds up to breakfast?  I shaved off my three week stubble and a doctor put a dot on the side of my face they’ll be operating on.  I’m dressed in operation clothes, a Gandhi-style sheet.  In a few minutes the nurse is returning to put an IV feed into my hand.  That’s where they’ll put the sleeping liquid in.

I feel great physically.  Strong and healthy.  Not sick at all.  I know I’ll freak out right before the operation itself, but man am I glad this is happening.  Maybe, just maybe, late this afternoon I’ll be cancer-free.  That would make it a one-week cancer — it’s one week ago that I was diagnosed.  Taiwanese medical care has to be the best in the world.

I guess you’ll hear from Diane next.

Friday, July 25, 2008 Erik No comments

Thanks all you guys for your offers of help and support. We really appreciate it. Erik got through the 4 and one half hour surgery yesterday really well. I got worried at the end because I  really did not know it would take so long, but as the doctor said later it was ‘a major operation’. Sometimes ignorance is bliss. After the operation was difficult for Erik. Now they have taken off the bandages and we can see the extent of it–at least I can, Erik does not really want to look at it yet. They had to take some muscle and nerves away with the mass-but luckily he will not lose any movement in his shoulder or arm–just behind his ear is numb and will always be like that from now on because of the nerves they had to remove. The good news is it does not involve any hearing loss. It was kind of a good thing that I read a little about lymph node system before the operation because I was not so surprised by the huge mass they showed me after the operation -it really is a system of nodes and not just one. Now Erik is sleeping a lot and I read to him from the Guardian and the New York Times. He has eaten lots of ice cream and some great Taiwanese fruit that I am sure alone could cure him. Erik says hello–or would say if he was awake now.

diane

Saturday, July 26, 2008 Erik No comments

I posted some updates about Erik post operation. Today he is sleeping and I am waiting for the typhoon to come. We are kind of on a low after the high of being finished with the operation. We don’t want to think about the next set of tests that the doctors are going to give, but they are always at the back of our mind. Thanks everyone for your words of encouragement and offers of help.

Regards,

diane

Sunday, July 27, 2008 Erik No comments

Erik was feeling very positive last night, and he sat up in a chair for a little while. This morning he felt a bit down again and worried. He is getting better everyday though and this morning I helped him take a shower being careful not to get the various wires connected to him wet. After the shower the doctor came and said he could take out the drain. That was a big relief, and means it is getting closer to the time that we will know when we can go home. We had a short walk around the ward and looked out all the windows at the typhoon. This morning Erik got to talk to Yrsa and Rima who are being cared for in Hsinchu by their very lovely kindergarten teacher–the biggest worry there is that Rima has not done a poo since we left her on Thursday but I assured her teacher that it will arrive at some point. Now Erik is having a nice rest and I will try and see what is open downstairs to get something very soft for him to eat. Thanks again for all your messages, Erik likes to hear them when he wakes up.

Regards,

Diane

Monday, July 28, 2008 Erik No comments

My doctor has set me up for a series of tests.  They’re checking my stomach, my teeth, my bone density.  They did another CT scan and they study my receptivity to radiation.  The idea is to gather all this data by Friday, together with the pathology report from the operation, and to set up a treatment program for me.  Great!

Still, every test feels like an occasion when something terrible could be revealed.  The guy who does ultrasound on my stomach is very unsmiling.  He slides the sonar sensor across my lubricated gut, pauses for an eternity around what might be my gall bladder, “abnormal shape,” he mutters to himself.  Oh no, I’m thinking.  I was never particularly close to my gall bladder, but I’d hate to see it go.  And I know, if I give them the gall bladder, they want my kidneys and liver next.

But the CT scan was worse.  I wasn’t allowed to eat or drink all morning and at 10 o’clock I was marched down to the outpatient clinic in the basement.  Everyone was looking at this big foreigner with a slit throat, thinking “poor sod, how did he end up this way?”  After an hour in their waiting room, I was ready to pass out, but they finally took pity on me and wheeled me into the scanner.  A CT scan is less noisy than an MRI scan and it’s quicker, but the contrast liquid they poured into me made me feel weird.  Diane took me back up to the safety of my room afterwards and I immediately fell asleep on the bed.

I overslept the dentist appointment by two hours, but when I eventually got there the dentist insisted my teeth looked fine.  No cavities and no problems.  I have never been more proud of my tooth brushing skills.

Monday, July 28, 2008 Erik No comments

Yeah, I’m back.  Sort of.  It’s day four after the operation and I can eat, drink, talk and walk.  And I can type (although an IV channel in my right hand makes it a little painful).

I was very excited going into the operation and actually very calm about it.  If you have cancer and someone promises to take it away, of course you’re excited.  The calm may have been misplaced, however.  The operation was much bigger than I realized beforehand.  It took over three hours and they took out a lot of stuff.  With a bit of bad luck I could have lost mobility in my right arm.  Well, I didn’t.  Only lost feeling in part of my right ear.  Never mind.

But I still feel like someone slit my throat and I look like Frankenstein’s monster with scars going from my ear to my chin.  I’m on powerful painkillers. One afternoon I dreamed my way through the entire Sergeant Pepper’s album, with tangerine trees and marmalade sky and everything.  It was nice.

The big question is of course how successful the surgeon was.  How much of the cancer that’s gone and how much that’s left.  I’m doing tests later today.  Imagine if the results are positive?  Imagine that they’re negative?  … sigh … all of this is just too hard for me … I wish I was made of sturdier stuff.

Regardless, I should be able to go home soon.  The doctor actually claims that I can go swimming in two weeks’ time.  We’ll see about that.  For now I’m really happy just to sit up, drink papaya juice, eat rice buns and type on the computer.

 

Monday, July 28, 2008 Erik No comments

The metaphors most commonly used in relation to cancer concern war.  Cancer is a “battle” in which you have to “fight.” And when someone dies from cancer we say that they “lost their struggle against illness.”  Or having cancer is compared to a sports competition.  You must “win” against the disease; you must “beat” it; “加油, jiayou!”, say the Chinese to cancer patients just like they do when they cheer on their sports teams.  “Come on, try harder, you can do it!“

I never really understood what any of this meant.  If cancer is a war, it’s a war where the illness is an atomic bomb and all you have for your defense is a little plastic gun.  If it’s a sports competition, I’m Buster Keaton and the cancer is the big neighborhood bully who is going to beat you to a pulp.  Besides I’m not a fighter.  I’d rather give up right away.  Or rather, I’d run away.  Run so fast nothing could stop me.  Run until I find a hole where I can hide.

The truth is of course that as a cancer patient, you’re not a warrior nor a sportsman, you’re a lamb to the slaughter.  You’re meekly bowing your head, waiting for the final blow.  And there is no running away since no matter how fast you run, you always will be taking the illness with you.This is why the real struggle is not with the illness but with myself.  I have to fight againt my fear; fight against my instinct to cover my ears and scream; fight against my automatic flight mechanism.  I wish I was a tougher, or at least a wiser, guy; I wish I was closer to enlightenment.  No, I’m not half-way there yet.

Tuesday, July 29, 2008 Erik No comments

Diane and my friend Tsungyi just had a discussion with the junior doctor who is in charge of me here on the ward.  More data has come back and he isn’t happy with it.  There is a “shadow” in one of my lungs and there is a “spot” on my liver.  We don’t know what this means.  The doctor doesn’t know what this means.  There will be further tests on Friday.  Something called a PET scan.  It’s far more accurate than lung scans or ultrasounds.

A new gun is pointed to our heads and we are suddenly terrified.  I write about it now, mainly because I can’t even begin to think about it.

Tuesday, July 29, 2008 Erik No comments

The most important appointment yesterday was with professor Ko himself.  I hadn’t seen him since the operation and it was about time he checked up on me.  Before the check-up I was a wreck as always.  What if he would tell me that the operation hadn’t gone as well as he had hoped?  What if he would tell me that there still was cancerous stuff they couldn’t get to?

As always he set me right at ease.  I already told you about his hands.  Let me tell you about his hands again.  His fingers are exceptionally long and very strong.  They are the kinds of hands which you feel an immediate compulsion to touch.  And when you do, professor Ko is not in the least surprised and he doesn’t draw back.  Instead he turns your hand gently around and gives you a little squeeze.  This is an instinctive gesture all parents do to children.  It means “Don’t worry.  I’m in charge here.  I will help you.”

“We took out lymph nodes at positions 1, 2, 3, 4 and 5,” he began, pointing to various sections of my throat.  “We removed all the growth tissue.  There is nothing left.  With radiation treatment and chemotherapy you should be able to fully recover.”

“Removed all the growth tissue.”  “Fully recover.”  We never dared to think thoughts like that.  Back in my room again, I can’t stop crying.  I cry like I always cry when Diane has given birth to a new, healthy, baby daughter.  The cry that comes when the tension suddenly is released, and everything, despite your worst fears, turns out to be alright.  I’m so enormously releaved and so infinitely grateful.

Tuesday, July 29, 2008 Erik No comments

Just to add extra drama, this web page crashed last night.  In fact my whole server went down.  Usually when that happens I can restart it by logging in through a back-door, but now this wasn’t even possible.  Without a blog, there is no way to update you and no way to get feed-back.  For the first time, and despite Diane being here in the room with me, I felt both alone and scared.

I wrote an email to VPSLink in Seattle, the people responsible for the hardware.  My first note was technical, my second note emotional.  “I’m in a cancer hospital in Taipei, Taiwan.  My web page keeps me in contact with family and friends.  Yes, it means a lot to me.  No, I haven’t made backups recently because I’ve been too busy dying.”  The poor over-worked, under-paid, VPSLink employee.  “What will these customers think of next?”

VPSLink did what they always do.  They blamed me for the fault, and then, as if by coincidence, they restored the page and everything is now running smoothly again.

I’m as dependent on this web page as I am on painkiller.

August 1 update: apologies to VPSLink. It really was my fault that the server crashed. The disk was simply full. I’ve deleted a lot of old files and everything should run much smoother. Apologies to my readers too. I’m releaved since I’ll be relying heavily on this blog page in the coming week.

Wednesday, July 30, 2008 Erik No comments

chicken run

Thanks for all the comments after our crisis last night.  They are incredibly helpful.  Your wisdom and knowledge of cancer make it possible for us to start thinking of different alternatives.  We are trying, despite all odds, to stay positive.  Thanks to you, this is how we are thinking about it now:

  • those “spots” and “shadows” might not be malignant.  They could be the result of something quite unrelated. These things, after all, happen.  Not even the doctors will know before they make a biopsy.
  • even if they are malignant, they must be very, very recent developments.  As luck has it, I had a health check-up as late as on May 13, 2008.  At that time they investigated liver and lungs and came up with nothing (in addition, I had two lung scans in April).  If they now have detected something new, it must be a very early detection indeed.
  • there are ways of treating also these multiple cases of cancer in various organs.  The doctors here in Taipei are 100 % competent to carry this out, and they all seem to be eager to go for it.
  • I have no alternative but to fight this with all the strength I got.  I have a wife and four small children who depend on me.  All I need is to be shown a path and I will follow it.

Today there is nothing scheduled.  No tests, no doctor’s verdicts.  We are trying to look into alternative ways of getting treatment here in Taipei.  We don’t need better doctors, but we need doctors who can communicate better with their patients.

Thursday, July 31, 2008 Erik No comments

sherlockYesterday, Thursday, there were no more tests planned. I and Diane spent most of the day in our room.  I took off my hospital clothes and slept in my underwear.  The way I do at home.  Diane came into bed with me.  NTU Hospital beds are narrow, but if you fold up the grid on the side of the bed you’re surprisingly comfortable.

The nurses who came in with pills were a bit horrified.  Two half-naked people in the same bed together!  That foreign professor must be feeling much better already!

Actually we spent the day listening to Librivox recordings of Sherlock Holmes.  Librivox — “accoustical liberation of books in the public domain” — is a web-based collection of ordinary people who read out-of-copyright books, 19th century classics mainly. Why read a book when you can have it read to you?

When I was sick as a kid I always listened to the radio.  It’s endlessly soothing.  On the radio there are fewer sensory data to cope with, and you can listen with the blanket drawn above your head.  The Sherlock Holmes stories are wonderfully well crafted and give a strong sense of the texture of life of late Victorian Britain.  The whole afternoon we just laid there on the bed, drifting in and out of sleep, as men with “swarthy brows,” “sprightly young ladies,” and representatives of “the most well-regarded families in Norfolk” joined the NTU nurses in parading around our room.

I know Sherlock Holmes would have found my cancer.  And he would have eliminated it with a swift blow of his walking stick.

Thursday, July 31, 2008 Erik No comments

I spent two hours inside this machine today. This is a PET machine, a machine for Positron Emission Tomography.  After two hours inside it, this machine knows more about you than you will ever know yourself.  This is the machine that finds cancers however small and however inaccessible.

Going in through the long tube in the middle is not for people with claustrophobia.  Luckily I’m not claustrophobic.  More than anything it feels like being inside a coffin. Or perhaps you are buried alive after some terrible earthquake and the sharp drilling and hacking noises you hear throughout the test are the sounds of the rescue team trying to get you out.

Actually, I didn’t worry in the slightest.  I’ve done too many of these tests.  When the technicians wrapped me up very tightly and put me on the trolley I felt if anything like a baby being swaddled in a cradle.  I closed my eyes and, despite the noise, I fell asleep.

Now the PET machine knows if I have more cancer, whether it can be treated, and whether I’ll live or die.  Soon the doctors too will know.  And I guess, Tuesday next week, they’ll tell us.

Friday, August 01, 2008 Erik No comments

Our car was waiting at the highspeed-train station in Hsinchu.  We hopped in and payed the exorbitant parking fee.  It’s been a week after all.  First we drove off to get something to eat and then we stopped by at NCTU to pick up mail.  My colleagues, professors Lee and Tsai, came down to the car to say hello.  Maybe I should have put on more of a groaning act, but I really don’t feel so bad.  Not too bad for someone who just had his throat slit.

We picked up Yrsa and Rima at their kindergarten.  Their amazing teacher, Lou laoshi, and her daughter, have taken wonderful care of them for a week.  Yrsa looked worriedly at my throat, hoping, she said later, that I wouldn’t look to embarrassing to her friends.  Rima was suddenly very shy.  “Yes, those people.  I remember them.  They are my parents.”

We drove home in the car and the children talked about everything they had done: gone swimming; off to an amusement park; dinners in front of the TV; motorbike rides to school in the morning.  No, they hadn’t cried.  Yes, they had missed us, but not too much.

Going back in the car, everything was suddenly so normal, so natural, so as-it-must-be.  The past week quickly faded, like a nightmare in bright sunlight.

Saturday, August 02, 2008 Erik No comments

Inside the PET machine I had two dreams.  This was the first of them:

I dreamed I saw a parade of people.  Faces I’ve known from many different times and places were one after the other passing before me.  There was my father carrying me through the Swedish forest on his back; my sisters wrapped up in towels on a Gotland beach; there was  Diane waiting for our first date in Stockholm; Saga being born in the middle of a January snowstorm; students of all nationalities attentively listening to me (while their classmates were busy sleeping in the back).  There was a string of old girlfriends too — all happy now, apparently in a forgiving mood.  I suddenly saw myself on the Red Square, on the Washington Mall, in a small restaurant in Arezzo; going up the Mekong River with Diane and the children; eating doufu in a Taiwanese street market together with smiling colleagues.

What a blessed life, I thought.  What an incredibly lucky and blessed life.  And it was all so indescribably beautiful. The churning and thumping of the PET machine turned into a march which rose and crescendoed as we all walked off together, all the people, all the memories.  All happy now, all blessed.

Then the machine suddenly stopped and I woke up inside the tunnel.

Saturday, August 02, 2008 Erik No comments

This was my second dream:

I was back in Sweden again.  My ashes were scattered on a hillside overlooking a lake.  It must have been somewhere outside of Stockholm because there were oak trees in the forest, not only pine.  This is a peaceful resting place, I thought.  Not a bad location to hang out for an eternity.

Once in a while, people would come down to the lake to swim.  Amazingly some of them seemed familiar.  First the pitter-patter on the grass that covered me, and then the joyous laughs as their hot bodies hit the cold water.  It was Diane and the kids!  “I’m here,” I screamed, “right here.”  But of course they couldn’t hear me.  Every July they came back to the lake to swim and frolic.  Every year a little older, more responsible, but always full of life, mischief and sibling rivalries.

One year Diane had a man with her.  They held hands and talked gently to each other.  The children seemed to get along with him fine.  “Good for you, Diane,” I thought.  “It’s difficult to be alone in this world, especially if you have four children to take care of.”  Then a much older, almost grown-up, Saga appeared with a group of rowdy friends.  They drank wine, took a sauna in a little hut on the beach, and threw themselves naked into the water.

The following year the man didn’t return.  Diane came alone, but only with the two youngest this time.  Then the two youngest too stopped coming.  They must have had more exciting things to do than to go swimming.  But Diane was still there.  Every July, especially in the evening, she would sit alone by the water.  For hours, just looking at the sun lingering in the tree tops.  There was some white in her hair now and she seemed to have a problem with a knee.  “Diane, baby,” I wanted to say, “let’s always be together. Always.”

With a sharp intake of breath, I woke up, and found myself still stuck inside the PET tunnel.

Saturday, August 02, 2008 Erik No comments

We’re home again.  Friday afternoon after the PET test the doctor sent us home together with a Santa-size bag of medication.  My friend Zhiben came up to Taipei and helped us out with the details.  Very nice of him.  This was my first step on the road to recovery.  To summarize the week:

  • the operation on my throat went great.  It does still hurt but less and less every day.  I can eat and drink anything I like and people aren’t even looking all that much at my gash.
  • NTU hospital is certainly the right place.  The doctors are world-class.  Besides, everything happens very quickly.  There was no waiting time for the operation and all my tests were carried out ASAP.
  • NTU is very medicalized and technology-centered — and I’m all for it!!  But as a result they often forget about the patient — me in this case — and provide very scattered and incomplete information.  The junior doctors, in charge of patient care, are not always well informed about the thinking and plans of senior doctors.
  • the nurses are exceptionally professional, knowledgeable and friendly.  They do everything medical, but everything else — from feeding patients to readjusting their beds — is the task of family members.  I actually think this is a great system.  You recover so much quicker if your family is around.  But of course this depends on who your family members are.
  • the NTU facilities are equally first-class.  The best medical equipment; nice, spacious wards; a great set of shops and a food-court in a basement that looks more like a shopping-mall than a hospital.

The first step to recovery went well.  Let the next step begin.  I’m prepared.

Saturday, August 02, 2008 Erik No comments

Tuesday (Aug 5) is the big day.  That’s when I’ll be given information about the tests I took last week: the biopsy from the operation and the big PET scan.  That’s make or break day for me; the big one; when all the chicken will come home to roost and the fat lady will (or will not) sing.  Am I nervous about it?  You bet.

I have two appointments: with an oncology doctor in the morning and with professor Ko, my surgeon, in the afternoon.  I have number 100 for the oncologist.  His clinic starts at 9, meaning that he’ll see me around 11.30 or so.  A doctor who sees 100 patients in three hours gives each one 1.8 minutes, or 108 seconds.  Is this all the time he’s going to devote to conveying this life-and-death information?  Mumble a few words, point to a few charts, and send me away?  That seems unbelievably cruel.  Especially, of course, if the information is negative.  The NTU doctors know a lot about illnesses but not very much about patients.

 

Saturday, August 02, 2008 Erik No comments

Today Saga and Beata came back home to Hsinchu.  They spent the last week with the mother-in-law of Cindy, my colleague from work.  They went to Yilan, on the east-coast of Taiwan where the big mountains drop straight down and the great Pacific Ocean comes crashing in.  In Yilan they learned to cook peanut and tofu dessert; they went to a beauty spa, to a water park and to lots of fancy restaurants.  Besides they played cards and Wii together with Cindy’s son and his cousin.  Saga and Beata seem to have grown up a lot in the past week.  They are more independent, but also, strangely, much taller than I remember.  I’m lucky to have such colleagues as Cindy and her family.  Thank you so much for taking care of my kids.

The whole family is now reunited again.  Lets hope it stays that way.

Sunday, August 03, 2008 Erik No comments

sweden“Why don’t you just go back to Sweden?” asked one of the NTU nurses.  Good question.  Sweden is my country after all; that’s home; where my family and friends are; where I belong.  Besides, Swedish medical care is supposed to be world-class.

The problem is only that I haven’t lived in Sweden properly for some thirty years.  I’ve been busy seeing the world — Japan, the US, Italy, Britain, and now East Asia.  My old mother lives there and my sister Lena, and cousins and other relatives, but I don’t have any very close friends there anymore.  And I was not impressed with the care my father got when he died of cancer six years ago.  He was sent from one hospital to another by arrogant, and not obviously knowledgeable, doctors.  I fear it would take me too long to find a hospital, to do the tests, and I’d most likely have to wait around far longer for treatment.

I’m better off here in Taiwan.  We have our friends, great doctors, no time delays.  Besides, this is where our lives are.  We live here, not anywhere else.

The only scenario under which we’d go back to Sweden is if news turned out to be very bad for me.  Sweden is a much better place than Taiwan for Diane and the kids to start a new life.  My sister Lena would help them, and the famous Swedish welfare state.

Monday, August 04, 2008 Erik No comments

We are going back up to Taipei this morning to get reports from all the tests I took last week. My friend Mei-hong is coming with us.  She is wise, motherly, endlessly generous and very funny (and also, year after year, voted as one of the best NCTU professors in student surveys).  Just the kind of person you need around on these kinds of occasions.

The prospect that there could be cancer in my lungs and liver is of course particularly worrying.  Yet it must be better to get information about a very early-stage lung cancer today than to get information about a very late-stage lung cancer in five year’s time.  More information must still be my best friend.

Yet no amount of positive thinking can hide the fact that I’m terrified.  I’m starting to think I’m just to weak to cope with life.  Too emotional.  Too hysterical.

Tuesday, August 05, 2008 Erik No comments

I just got the result of the PET scan I did last week and there is no cancer in neither lungs nor liver.  Nothing malignant, nothing spreading.  The junior doctor who found “spots” and “shadows” just didn’t know what he was talking about.  There is nothing there.  Nada.  Niente.

No, this is not the end of it.  Thirteen out of the fifty-eight lymph nodes they took out were cancerous and the whole area where they operated has to be zapped. I have seven weeks of chemotherapy and radiation to look forward to, starting in two weeks. It makes you weak, it makes you nauseous, it makes you vomit and lose your hair.  But what the hell, I’ll live.  The prognosis, doctor Ko assured me, is very, very good.

We are immensenly relieved, but this time around we didn’t even cry.  We’ve been crying too much lately.  Now I’m just focusing on the task at hand — getting through the treatment and returning to my regular life.

Wednesday, August 06, 2008 Erik No comments

A mystery remains: where is the original cancer?  The cancerous lymph nodes that professor Ko operated on were a metastasis, an off-shoot of an original cancer.  Judging by the nature of the cells, the primary site should be somewhere behind the nose or in the mouth.  I’ve done two CT-scans, one MRI, one full-body PET and one head-and-neck PET.  In addition, professor Ko has inspected and prodded me with assorted mirrors and probes.  Yet nothing has been found.

One possibility is that the original cancer is so small that it can’t even be detected with a microscope.  If so, it should be fairly easy to wipe it out with the help of chemo and radiation.  Another, weirder, possibility is that there is no original cancer.  There is a metastasis, in other words, but no cancer which the metastasis is a metastasis of.  Apparently there are some reported cases like this.  Professor Ko sent me this paper:

Diane is already annoyed.  “You couldn’t just have a normal cancer, could you?  You had to have to have something special.  What a show-off!”

Wednesday, August 06, 2008 Erik No comments

skaterWith a super-sonic bang my time horizons just expanded.  For a while there I figured I had about a 50/50 chance to make it to age 50 (three more years).  But now I’m suddenly thinking of making it to 100.  With good nutrition and plenty of exercise, why not?

It is an amazing experience to live with a radically foreshortened time horizon.  The present moment becomes all you have.  You rest in it; you hold on to it; you savour it completely.  You don’t worry about the future for the simple reason that the future might never come.  Instead each second is so rich, so full of flavor, color and texture.  There are accounts from Nazi concentration camps that describe this experience: the indescribably beauty a sun-set that might very well be your last.

I wish I always could live like that.  Every day.  Every moment.  Not to worry about the future.  To rest, happily, in one present after another.  This would be to truly live one’s life, instead of skating over, and missing, most of it.

But then my time horizon expanded and so did our plans.  Maybe we should go to the US in February after all?  Maybe we should buy that expensive German refrigerator?  Learning that Chinese character makes sense — I might make use of it later.

It’s a great relief to make plans.  To have the time.  Yet I miss that experience of the present.  I miss the indescribably beauty of one moment after another.  I’m once again starting to skate too quickly across my life.

Wednesday, August 06, 2008 Erik No comments

My health insurance just got upgraded to “disaster accident” class.  In the US, this would surely mean that I had to pay extra high premiums or that the insurance companies would drop me completely.  Here in Taiwan, however, it means that I only have to pay 100 NT (three dollars US) when I go to the doctor, instead of the usual 340 NT.  This is the beauty of universal and obligatory health insurance.

“Maybe we can even get free parking in handicapped spaces,” Diane suggests.  In the two years we’ve lived here my wife has become perfectly Taiwanese.  The trick is to turn every adversity into an opportunity for free parking.

Thursday, August 07, 2008 Erik No comments

My health insurance just got upgraded to “disaster accident” class.  In the US, this would surely mean that I had to pay extra high premiums or that the insurance companies would drop me completely.  Here in Taiwan, however, it means that I only have to pay 100 NT (three dollars US) when I go to the doctor, instead of the usual 340 NT.  This is the beauty of universal and obligatory health insurance.

“Maybe we can even get free parking in handicapped spaces,” Diane suggests.  In the two years we’ve lived here my wife has become perfectly Taiwanese.  The trick is to turn every adversity into an opportunity for free parking.

Thursday, August 07, 2008 Erik No comments

gobiOnly yesterday — reading insightful comments on this page — did it dawn on me what my doctors are planning to do.  They are going to totally burn off the mucus tissue covering the interior of my throat, mouth and nose.  They are going to parch me, elephant-hide me, turn the inside of my head into a Gobi desert full of dead carcases and whitening bones.  By killing every other living cell in this whole area, they are hoping they will also kill the original cancer — if it exists — and all the entrepreneurial little cancer cells that happen to be floating around.  Or, in the medical vocabulary, I might experience “extreme dryness of mouth.”

It sounds like I won’t be able to eat much, drink much, or even swallow.  It sounds like I won’t sleep much either and like I’ll be in a permanently grouchy mood.  Six and a half weeks, did you say?  Great!

Of course I’ll go through this.  If it’s what needed, I’ll go through it gladly.  But chemotherapy and radiation seem like such a brain-dead form of medicine.  Like some village idiot on a rampage it just hits away at everything that moves.  I can’t help wondering whether there isn’t a slightly more intelligent solution.

Friday, August 08, 2008 Erik No comments

“Cancer is a great gift,” says my friend Ilya, quoting a Buddhist teacher.  “Give me a break,” I think to myself.  People’s fear of death is the illegitimate trump card of all religions.  They use it to scare people into believing in unbelievable things.  Death makes vicars and priests snicker in secret since they know it eventually will make the errant sheep come back to the fold.

“Yes,” Ilya continues, “after a diagnosis of cancer, you’re forced to re-examine your life and to live better.  It’s a great opportunity.”  Of course he’s right.  Nothing, after all, clears your mind like the prospect of an execution in the morning.

The advantage of Buddhism is that it doesn’t force you to believe in the absurd.  There are no virgin births or water transformed into wine.  Buddhism is not peddling any comforting truths, but instead the harsh teaching that most of what you take to be reality is nothing but an illusion.  Most of all you are mistaken about who you think you are.

But forget philosophy.  Buddhism is also a set of hands-on prescriptions: eat vegetables, exercise, sleep well, meditate 20 minutes per day.  It doesn’t really matter what you believe in the end, only what you do.

I don’t think I can become a Buddhist.  I’m too much in love with my illusions (most of all, no doubt, the illusions I have about myself).  But I know I can live, eat, sleep and exercise better.  I will also start meditating 20 minutes per day.  It’s surely a good thing to learn how to calm down.  The road to enlightenment starts with a bowl of brown rice and a moment of silence.

Friday, August 08, 2008 Erik No comments

broccoliI’m eating broccoli.  A bowl-load a day.  Broccoli contains a lot of anti-oxidants and anti-oxidants help repair cells and prevent cancers.  There are stories about people who complete cure themselves from cancer by going on an all-broccoli diet.  No doubt much of this broccoli propaganda is urban legend, but some of it is surely science.

Green tea is great too.  And berries.  It’s their large tea consumption that keeps cancer rates low among the Japanese and their large berry consumption that keeps Finns healthy.

For me, eating broccoli, berries and drinking tea implies no sacrifices.  I adapt easily.  I even like what broccoli tastes like.  “The only problem,” I say to my friend Zhiben, “is that broccoli gives you gas.”  “No,” he assures me.  “Not in Taiwan.”  Unfortunately Zhiben, I think you’re wrong.

Saturday, August 09, 2008 Erik No comments

I haven’t done anything at all for the last two days.  I’m just laying about in total unproductivity.  Mainly I’ve slept and watched Olympic coverage on Taiwanese TV.  The Olympics provides just the right level of excitement.  If it keeps you awake, that’s fine.  If it makes you fall asleep, that’s fine too.

I still feel very numb on the right side of my head and the gash in my throat is hurting, but it’s all healing up very nicely so I guess there is nothing to worry about.

I’m due to start chemotherapy and radiation on August 25, but my friend Meihong thinks we should look for an earlier appointment.  I guess I could be ready a week sooner.  Especially if I can spend my time until then doing absolutely nothing …

Sunday, August 10, 2008 Erik No comments

No, I won’t be teaching next semester.  I’ll be under treatment until October and most likely I’ll be hospitalized for at least some of the time.  And once it’s over, I’ll need a few weeks to recuperate.  What about my work?  What about my salary?

My boss, Thomas Lee, has come up with a brilliant solution: he’s switching my semesters around.  I was supposed to do research in the spring of 2009, but now I’m getting this time off from teaching already this fall.  It’s great to know I don’t have to stress myself to get back to the classroom and that money won’t be a problem.  Funnily enough, I might even get some research done.

I’m very impressed with this way of solving the problem.  In Britain, my boss would have washed his hands of the issue and called in Human Resources.  In Sweden, the boss would have talked to the trade union representatives and the relevant government agencies.  In the US, I would most likely have been fired and my house repossessed to pay for the medical bills.  In Taiwan, however, they rely on friendly, informal, solutions.  It’s a very efficient, compassionate, system.

Sunday, August 10, 2008 Erik No comments

receiptTake a look at this receipt.  It’s my medical bill for 33 sessions of radiation and chemotherapy at the NTU hospital.  The total cost is 37,251 NT ($1,195 US or 630 GBP).  What I’m paying, however, is a mere 100 NT — $3.20.  The rest is paid by the national medical insurance.  And remember, we are talking mayor cancer treatment here: super-duper doctors, latest high-tech equipment, at the best university hospital in the country.  “Socialized medicine,” I love it!  And I love paying the taxes that support it.

In November of this year, Americans have a chance to vote for a president who will put a similar system in place in the US (OK, it won’t be quite as good, but it’ll be something similar).  I wonder what Americans will decide?  What is best — a system that protects everyone at a minimal cost or a system that only protects some people together with the profits of the insurance companies?  How long can they go on cheating you before you realize you’ve been cheated?

Tuesday, August 12, 2008 Erik No comments

I did a “radiation simulation” today, in the basement of the big hospital in Taipei.  First they put a plastic compound on my face and made a mask. Then they put a mark on my chest to indicate where the mask should line up with my body.   I’ll have to walk around with this tattoo for the next eight weeks, and woe to me if I accidentally wash it off in a shower.

radiation simulationAfter that I met my radiology doctor, Dr Ding, who is very motherly and speaks great English.  “It’s very important,” she said, “that you don’t lose weight.”  When did you last hear that from a doctor?

Next a friendly nurse showed me around the premises and gave me a card I’m supposed to bring to each visit.  She also gave me a long lecture on radiation side-effects and how to deal with them.  Basically it seems to be a matter of being as nice as possible to my mouth, nose, throat and neck.  I have to eat soft — not too cold, not too hot — things, not brush my teeth too much or sit in the sun.  She gave me a long list of various creams and preparations that can help revive dead mouths.  50 % of patients end up hospitalized, she said, but then again 50% do not.

After lunch they strapped me to a bed, put the new mask over my head, fastened it securely, and ran me through a CT scan for ten minutes.  To be strapped down with a piece of plastic covering your face is bound to release automatic flight mechanisms, but I’m glad I managed to remain cool.  Why panic now after all I’ve already been through?

I have 33 sessions of radiation lined up, together with a weekly dose of chemotherapy.  It’s all starting on August 25th.  To say that I’m looking forward to it would be an exaggeration, but I’m very happy to have a definite schedule.  I’ll get a lot worse, but then I’ll get a lot better.  No, damn it, I’ll be cured!

Perhaps I could have the mask once they’re done using it.  It would lend itself very nicely to some kind of art project or installation.

Wednesday, August 13, 2008 Erik 1 Comment

“Chinese Taipei,” 中華台北, is what they call Taiwan in the Olympic Games, and this is its pathetic looking flag.  The Beijing government considers Taiwan to be a part of the People’s Republic of China and as a result Taiwanese athletes can’t compete under its country’s official name.  How totally embarrassing.  It’s like Swedish athletes competing for a country called “Swedish Stockholm,” or Brits for “English London.”

It matters a great deal how we are recognized by others.  If we are to establish a proper identity we need to be recognized by others in terms that we recognize ourselves.  (I wrote a book about this!)  If not, we will never quite know who we are.  Taiwan, very obviously, does not know who or what it is.  Ironically, the current KMT government agrees with Beijing that Taiwan is a part of China, but for them it’s still part of “The Republic of China,” the regime kicked out by Mao in 1949.

Actually, the Chinese characters imply a concession of sorts by Beijing. 中華台北, zhonghua taibei, sounds an awful lot better than the alternative 中國台北, zhongguo taibei.  Zhonghua refers to China understood as a cultural unit whereas zhongguo refers to the Chinese state.  It’s much better, that is, to be called “Chinese Taipei” than “China’s Taipei.”

Still, it is embarrassing.  Our TV station took a commercial break when the Taiwanese athletes marched into the stadium during the Opening Ceremony.  Maybe it was a coincidence.  Maybe they decided to spare Taiwanese viewers the humiliation.

Wednesday, August 13, 2008 Erik No comments

tainanWe are off on a mini-vacation.  We are going to Tainan, a city in the south, to stay in a big hotel for three days.  Tainan is supposed to be a very traditional place, with lots of old temples, narrow streets, and the best food in Taiwan.  Foreigners, we are told, like Tainan a lot.  Amazingly, we’ve never been.

Only Yrsa and Rima are coming with us.  Saga and Beata went with my friend professor Ted and his Master’s students on a hike to the center of Taiwan.  This is where the high mountains are.  Hard to believe for such a small island, but Taiwan has 100 peaks over 3000 meters.  A very upbeat Saga called me yesterday from somewhere way above the clouds.  They are staying in a hostel, playing cards and making friends.  It was only 11 degrees she said.  I’m glad the two older girls get to do something different.  They are fed up sitting at home hearing their parents talk about nutrition and treatment options.

We didn’t have a proper family vacation this year.  I and Yrsa went to Beijing at the end of June — foolishly postponing a doctor’s visit by two weeks — but the others stayed at home.  The original idea was that we should go to visit our American family.  It’s been six years — a long time, especially in the life of a four-year old like Rima.  Then of course my cancer intervened.  Now a mini-vacation is about all we can manage.

We are taking the high-speed train down to Tainan, and I’m planning to remain in air-conditioned locations.  Everyone says Tainan is very hot this time of year.

Thursday, August 14, 2008 Erik No comments

tropic of cancerGoing down to Tainan we passed the Tropic of Cancer.  We are now officially in the tropics.  The Tropic of Cancer, according to Wikipedia, is “the northernmost latitude at which the Sun can appear directly overhead at noon. This event occurs at the June solstice, when the northern hemisphere is tilted towards the sun to its maximum extent.”  It’s called the Tropic of Cancer since, when it was named, the sun was in the constellation of Cancer during the summer solstice.

As Wikipedia goes on to explain:

Cancer, the Crab, plays a minor role in the Twelve Labors of Hercules. While Hercules was busy fighting the multi-headed monster, Hydra, the goddess Hera, who did not like Hercules, sent the Crab to distract him. Cancer grabbed onto the hero’s toe with its claws, but barely breaking the rhythm of his great battle with Hydra, Hercules crushed the crab with his foot. Hera, grateful for the little crustacean’s heroic but pitiful effort, gave it a place in the sky. The crab did not win, so the gods didn’t give the crab bright stars. Cancer’s brightest star is Acubens. It is a whitish color.

I like that story.  I’ll rewrite it as “The Twelve Labors of Erik,” and like Hercules I’ll crush the cancer with my foot.

Tropic of Cancer is also of course a book by Henry Miller.  I first read it as an easily excitable teenager.  The book is famous for its graphic descriptions of sex — and it was long banned in the US — but all I can remember is Miller’s constant stream of thoughts and images.  It was my introduction to modernist literature.

I hear not a word because she is beautiful and I love her and now I am happy & willing to die.

Friday, August 15, 2008 Erik No comments

tainan dutch fotressWe’re back from our mini-vacation in Tainan.  I can’t remember when I spent a lazier weekend.  Despite all the historical and cultural attractions of the city, we barely left the hotel!  I’m recovering from a cancer operation, remember?  I don’t have to do history and culture.  All I have to do is to call up room service.

After sleeping in late, we moseyed over to the next-door mall for lunch and dinner and did a precision-bombing taxi expedition to two Dutch-built 17th century fortresses.  Other than that, we watched the Olympic Games on a Japanese TV channel in our room.

A taxi driver we talked to was very lyrical concerning Tainan’s attractions.  Its habitants are obviously very proud of their city.  Tainan is calm, cute, and well-organized.  There are temples and old shops everywhere.  We clearly have to give it more of a chance on another occasion.

For a few days I forgot that I have cancer.  I forgot what I’ve gone through and what I have yet to go through.  Returning to this web page after a few days, I can’t understand why I’m writing about this topic.

Sunday, August 17, 2008 Erik No comments

Filipina amahsOutside of the NTU hospital they are distributing flyers advertising Filipina amahs.  An amah — from Portuguese ama — is a domestic servant who combines the roles of maid and nanny.  She cooks and cleans and looks after the children.  Amahs from the Philippines are reputedly the best.  Meaning, they work hard, don’t complain, and they are cheap.  You can get one, the flyer says, for 15,000 NT a month ($475 US).  Considering that the agency no doubt takes 5,000 NT, she’s unlikely to make more than 10,000 ($ 318 US).

Amahs are common in Hong Kong and Singapore, but in Taiwan they are mainly employed as helpers for old people with relatives who have theIt’s one of the things I like about Taiwan: this is not a post-colonial economy with large discrepancies in wealth.  Lots and lots of people are middle-class and even poor people aren’t that poor.  As a result you can’t make a Taiwanese girl work for that kind of money.  Would it be right to make a Filipina do it?

I’m instinctively against having a servant around.  I don’t function well in hierarchical relationships.  I don’t know how to give — or receive — orders.  Besides, I don’t want my children to grow up in the belief that there always will be someone around who will clean up their messes.

But I guess the Filipinas need the money.  Maybe, out of liberal guilt, we could double her salary?  Undoubtedly, if I end up hospitalized in Taipei in the next couple of weeks, Diane will need some help at home.  She can’t at the same time work, look after the kids — and me.  Maybe the Taiwanese system of using relatives as nurses isn’t so great after all?

No, on balance, I think we’ll try to survive without an amah.  I’m not in the hospital yet and if I end up there I’ll have to look after myself.  In any case, this hospitalization won’t be like the last time — not as dramatic, not as painful.  I’ll just sit there in the day-room together with all those old guys, with a drip running through my nose, watching Chinese soap operas for a few weeks.

Monday, August 18, 2008 Erik No comments

It seems a measure of sensitivity is returning to my right ear.  Yeah!  The doctors said they took out the relevant nerves and that I’d lose feeling in it.  At the time, I didn’t complain too much since I was delighted they didn’t permanently disable my right arm (which also could have happened).  But for the past three weeks it’s been very strange to sleep on the right side of my head.  Instead of my ear, I’ve slept on a slab of hamburger meat someone put on the pillow.  And although my hearing isn’t impaired, it’s been weird to speak on the phone.  But now, perhaps, I’m getting my ear back.  Perhaps enough nerves survived?  Perhaps my body found a way to reroute the circuits?

I’m also off the pain killers (except for occasional Paracetamols in the afternoon).  My gash feels tight and numb but it isn’t actually painful.

I have another week before my treatment begins.  I’ll be almost back to normal.

Tuesday, August 19, 2008 Erik No comments

Saga and Beata, our two oldest, claim we talk too much about death.  Almost every topic around the family dinner table ends up at the same conclusion.  “I listened to the Beatles all the time when I was a boy.  John Lennon was the best — he is dead now.”  “Passion fruit is delicious.  And did you know, it can lower blood pressure.  High blood pressure can kill you!”

grim reaperBut I insist that this is not a morbid obsession. Death is part of life, something natural.  An eventual conclusion that we must learn to accept.  Talking about her now we slowly come to befriend her.

Astrid Lindgren, the Swedish author of children’s books, got to be very old.  She died in 2002 at the age of 94.  Meeting up with friends of a similar age in the last years of her life she would start the conversation by saying “döden, döden, döden,” (”death, death, death”).  Once that theme was disposed of in this succinct manner, she would turn to more interesting topics.

I remember my father visiting us when we lived in Thailand in 2002.  We went to a rice farming village outside of Bangkok.  With great curiosity he inspected a large chimney beside the village tempel.  “Do you think they use that for cremations?” he asked.  “That’s a very nice idea.  To be burned right here in the village by your family and friends.”  I was horrified.  Nine months later my father died and there was suddenly no way to avoid the horror.  Now I wish we, his family and friends, could have burned him in a village crematorium.  It is a nice idea.

Wednesday, August 20, 2008 Erik No comments

My cancer has taught me a lot of things.  Having cancer is a very educational experience.  In fact it’s difficult to learn as much elsewhere without paying exorbitant tuition fees.

I used to think, for example, that my writings were very important to me — all those books and articles I’ve written over the course of the years.  In academia, you must publish lest you perish.  I was very caught up in all that (in my own way, naturally). Yet face-to-face with my cancer, none of that turned out to be important.  I could have written a couple of more books I suppose, but then again I could have written a couple of books less.  No difference!

What mattered instead, much to my surprise, were my students.  Teaching is very undervalued from a career point of view.  As a professor you have to teach but it’s not something you are given much credit for.  And although I’m as lazy as the next prof when it comes to grading exams or reading PhD student chapters, I’ve always tried to convey the excitement I feel over certain ideas, persons and historical events.  My secret agenda, like Socrates’, was always to pervert young minds.  In some cases I was pretty successful.

What really matters are your relations to human beings, not to books.  As an academic you are related to books, but as a human being you are related only to other human beings.  It’s always human beings, never academics, who have cancer.

Thursday, August 21, 2008 Erik No comments

The Taiwanese TV coverage of the Olympics is actually totally abysmal.  A couple of different stations carry the event, but none has spent any money on the production.  They don’t have a proper studio, no invited guests or background reports on the participants.  In the day-time they show a random schedule of synchronized diving and pingpong.  Yawn!  And in the evening they think nothing of breaking off a very exciting gold duel in women’s pole-vaulting in favor of the same old soap opera they show every other day of the year. Ahrrg!

Still, I’ll miss the Olympics when it’s over.  I’m not really such a sports fan, but I like events that attract everyone’s attention around the world.  The Olympics allows you to leave your private lives for a while and participate — even if it’s just as a spectator — in a shared experience.  Collective experiences are always larger than life.  I like larger than life.

Thursday, August 21, 2008 Erik No comments

Inevitably I think of my friend Nasser who died of cancer a year ago.  He lived with his wife and two daughters on the next street from us in London.  He was an academic like me, my age, his youngest daughter was in the same class as Beata.  I used to meet up with him in the park when he went bike riding with his kids. They were all such good pals, Nasser and his kids.  There is absolutely no reason why he died and I go on living.   I’m not better than him, not more lucky, not more loved by my family and friends.

Sometimes I have my doubts regarding the value of it all — this “life” stuff that us humans keep on perpetuating on each other. Sometimes I feel guilty for passing it on to so many children. The fear and the risks of living, and the terror of death.

Thursday, August 21, 2008 Erik No comments

spaghettiThe countdown to my treatment has begun in earnest.  It starts on Monday (Aug 25).  I have three days to go.  It’s going to be an ordeal for sure — very, seriously, unfun — but at the same time I’m really not worried.  I’m almost completely healed up after the operation, I feel strong and healthy, in good shape.  How bad can it get?

It’s ironic that all the pain so far has been inflicted not by my cancer but by the treatment.  The swollen lymph node never caused any discomfort, but the operation knocked me out for a month and now the radiation/chemo will knock me out for two months more.

Will I lose my hair?  Somehow I don’t think so.  I have a lot of hair.  While most guys my age worry about hair loss, I worry about hair gain.  My hair is like a well fertilized Wimbledon lawn.  The chemo has no idea what it’s up against.

We’ve bought all the paraphernalia we can lay our hands on: nutritional supplements, salves, creams, pills, ointments.  Since none of it was covered by the health insurance it was extremely expensive (about $300 US).  But we have to be prepared and these kinds of products can make a hell of a difference.

I’m eating spaghetti.  This is what long-distance runners do before big competitions, and what Diane did before giving birth to our kids.  Starchy food burns slowly and can power you for days. Besides, tomato sauce and broccoli have great anti-oxidant properties.

I feel like I’m going to go off somewhere, on some long journey.  I feel like I have to pack, say goodbye to friends.  It’s strange.  I’ll be going up to Taipei every day, but other than that I’ll be right here at home.

Friday, August 22, 2008 Erik No comments

hotel in GaoshungWe are going off on another mini-vacation.  Our decadent hotel stay in Tainan was such a great success, we have to repeat the experience.  Besides, it’s the last hurray before the kids go back to school, before Diane starts working, and before my treatment.  Are you allowed to enjoy yourself when you have cancer?  Of course you are!

We are going to Kaoshiung this time, Taiwan’s second largest city, the great port in the south.  This is another place we’ve never been.  Kaoshiung has a subway system, a beautiful river and large avenues.  Apparently, life down there is more rough and tumble.  We’re staying in a very fancy hotel.  The kids love hotel breakfasts.

Aug 24 update: we just got back from Kaoshiung.  We saw it all — from our room on the 56th floor of the hotel!!!  The city is beautiful.  It has a great commercial port and a large open ocean — the Luzon straights, on the other side of which is the Philippines.  Northern Taiwan is academic and serious, but in Kaoshiung human desires are more visible and more basic.  Young women smoke cigarettes in coffee shops; young men, with gold chains but without front teeth, spit betel nut juice in the street.

Naturally these are features which have given Kaoshiung a bad name.  But I like it.  I like life in all its multiplicity. Kaoshiung reminds me of Naples, Italy (in addition both places are famous centers of criminal activity and gang warfare).

Monday, August 25, 2008 Erik No comments

My treatment begins today.  The last two weeks have been great.  No doctor’s appointments, no tests, only a lot of lazying about.  I’ve thought about other things; I’ve felt almost like a normal person.  Now there is no more postponing it.  I’m forced to come back to my cancer.

I’m going up to Taipei every weekday from now on. Every afternoon they’ll radiate my neck and mouth for some 10-15 minutes.  I’ll get a dose of chemotherapy every Wednesday.  I have 33 appointments lined up and it’ll go on until October 8th.

We’ll be taking the High Speed Train, the 高鐵.  This is the new 300 km/hour train that connects all major cities on the west-coast of Taiwan.  It’s only 30 minutes from Hsinchu to Taipei, and the NTU hospital is very close to the train station.  I’ll get door to door in about 90 minutes.  Diane is coming with me, at least to begin with, and later on if I feel too lousy.

This is my new job; this, literally, is what I “do for a living”: to present the medical authorities with a sick body they can cure.  It’s an easy job really.  No responsibility, no stress.  Other people do all the hard work.

Of course I’m very happy about it, and I feel incredibly grateful to everyone involved in helping me.  All the doctors, the nurses, the medical equipment, my family, friends, old students, colleagues and blog readers.  I feel like walking up to perfect strangers thanking them for supporting the Taiwanese health care system through their taxes.  It’s a great, an amazing, thing that’s happening.  I was sick and now I’m going to get well.

Only too bad getting well has to be such an ordeal.  It’ll be like a 6 week long visit to the dentist, or like that summer job I had as teenager that I hated every second of.

As always, writing about it here will help.  A shared burden is a lighter burden.

Monday, August 25, 2008 Erik No comments

I just came back from my first radiation session.  It was easy piecy!  I expected blood and tears, but I didn’t even break a sweat.

Today my friend Qionghui and her husband accompanied us to NTU hospital. Qionghui told me about her aunt who had a cancer operation just like mine.  That was thirty years ago and she is still around.  “The happiest member of our family.”  Thirty years is long enough for me.

I dressed in the usual Gandhi sheet but the radiologist was unhappy.  The black mark on my chest — where the plastic mask is supposed to line up with my body — was no longer visible.  “Bad boy, you’ve been taking showers!”  She sent me off to have it redone.  The nurses were giggling as they shaved my chest hair.  “Very sexy.”

Then they put me on a narrow bed and pushed me into the radiation room.  They placed the mask on my face and strapped it down.  After adjusting the machinery for a minute, everything was ready.  “Don’t look at the laser, and don’t worry.”  “I won’t look,” I replied, “and I don’t worry.”  “OK, let’s go!”

For the longest time, nothing at all happened.  Then there was a piercing sound and a blue light passed before my closed eyelids.  Then a rattling sounds, as from a machine that was moving into a new position.  The piercing sound and the rattling sound replaced each other for some ten minutes.  I came close to falling asleep.  Then the nurses returned.  “OK, it’s over.”  That was it.  A real anti-climax.

Diane says my neck looks a little red, but I don’t feel any different.  But I guess the effect will build up over time.  To celebrate the first successful day of treatment I had a gigantic banana, walnut and soya milk shake.  I’m going to be the first cancer patient ever to put on weight during treatment.

Tomorrow we’re going back to NTU for 4 hours of chemotherapy.  Reports will follow.

Tuesday, August 26, 2008 Erik No comments

I had the first day of chemotherapy today.  In Swedish chemotherapy is cellgiftsbehandling — “cell poison treatment.”  Somehow or another I envisioned test tubes filled with bubbling green, poisonous, liquids stirred by mad witches.  Actually it’s nothing like that.  They put you in a bed, insert an IV channel into your hand, and hook you up to a drip. During the next two and a half hours a succession of nurses replace the plastic bag of liquid as the old one is depleted.  The liquids are transparent, like water, none of them is green and bubbling.  And there is nothing even remotely witch-like about the nurses.

The list of side effects is notorious: hair loss, impaired brain functions, numb legs and hands, nausea, vomiting — the list goes on.  But I haven’t experienced anything so far. In order to deal with the side effects, there is an endless list of do’s and don’ts: pills I must take, pills I shouldn’t take; food I should eat, food I shouldn’t eat.  And since I’ll get very weak towards the end of the treatment it’s important to stay away from other people’s germs and bacteria.  I shouldn’t eat from communal bowls — of soup or sauce — and I shouldn’t eat buffet dinners for at least a year!  (That tells you something about the microbiological content of your average smörgasbord).

Chemotherapy takes much longer than the radiation, and I hate spending time in a hospital bed, but under the circumstances there is nothing to complain about.  What’s heart rendering though are all the people in the beds beside me: old guys with terrible coughs, mothers with children, young girls with their parents.  It’s a vision of Purgatory.  They all love each other so much; they are all so worried.  But then again, everybody has a different story.  There are tricky cancers and there are relatively easy ones.  Even people who look terrible may have a good prognosis.

This is the chemo cocktail they’re giving me — chemo (click to download) — The main ingredient seems to be something called Cisplatin.

Only three more days of treatment this week.  I’m settling into a routine.

Sunday, August 31, 2008 Erik No comments

There is a lot of vague talk about the “importance of keeping your spirits up” during cancer treatment.  Apparently, unless your spirits are kept up, the cancer will get you.  “Laughs,” many proverbs in many languages tell us, “prolong your life.”  Somehow or another I’m not convinced.  Your cancer cells aren’t just another audience to win over.  If they decide to go for you, you’ll die, and your good mood has nothing to do with it.

Still, meet my new friend Tim Minchin.  He is a 33 year old Australian pianist and writer of funny songs.  I discovered him on Friday and I’ve been playing him on the computer constantly ever since (YouTube has a lot of clips).  I always loved witty lyrics and Minchin is a perfect update of Tom Lehrer.  He is outrageous, very smart, very silly, and my god can he play the piano.

Listening to Tim Minchin passes the time.  And I’m into time passing at the moment.  But there is more to it.  Minchin reminds me of how infinitely creative people can be.  How much wit and imagination that potentially exists within our brains. Listening to him makes me want to write, think, create stuff.

In interviews, Tim Minchin expresses a lot of doubt regarding the value of what he’s doing.  “It’s just art,” he says, “what’s the point of that?”  Well Tim, for me, right now, what you’re doing makes a hell of a difference.  You won’t cure my body, but you’re nourishing my soul.

Sunday, August 31, 2008 Erik No comments

This is a round-up of what happened in the first week of my treatment:

Aug 26, Wednesday morning, 3.30 A.M.: I feels like the winds of the Sahara are sweeping in through my mouth every time I take a breath.  Something is definitely happening.  The radiation is having an effect.  Good, I say.  The worse I feel, the better I feel.

Aug 27, Wednesday: Today Beata came with me to the hospital.  She is such a lovely, caring, person.  She wants to know what’s happening to her pappa.  We had fun on the train, she took care of my wallet and phone as I dressed in the Gandhi sheet, and on the way home we had fun on the train again.  It seems they nuked me harder today.  I feel like I’ve spent a day getting sun-burned on the beach.

Aug 28, Thursday: Went up to the hospital alone today.  The radiation session was short — only some 8 minutes.  I’m getting used to the metallic smell in my mouth during the session and the heat on my neck afterwards.  On my way back I had coffee with Yoko, a former student from London, who lives in Taipei.  She was diagnosed with cancer four years ago.  I’m having my first patient-to-patient discussions.  Reading about cancer, like reading about sex, is not the same thing as actually experiencing it.  It’s a strange coincidence that we meet up here in Taiwan.

Aug 29, Friday, 6.25 AM: I’m definitely developing some food aversions, just like pregnant women.  Thinking about what to eat for breakfast I can’t for the life of me imagine a fruit milk shake.  The very thought is horrific.  I used to love those!  In fact, I’m not really hungry for anything much.  Is this “morning sickness”?

Aug 29, Friday, 5 PM: I was sleeping on the train all the way up to Taipei and all the way back.  I slept through the session too although they hit me pretty hard.  Diane and the kids picked me up at the train station.  I was back home again in a flash.  Went straight to bed.

This was the firs week of my treatment.  It was a strange week.  I hate being “under treatment,” a subject of medical intervention.  I want my body and my life back!  But of course that will have to wait.  I’m OK so far.  I’ve lost my will to do things, and my mouth certainly is very dry.  But I’m applying all the preparations we bought and I’m OK.  Check out the card to the right.  The nurses stamp it at every treatment — I’ve done 5, I have 28 to go (LinAiKe, in case you wonder, is my Chinese name).

Sunday, August 31, 2008 Erik No comments

I wonder what my chances really are.  In movies there is always a doctor in a white coat who says “you have only three more months to live” or “there’s a 40% chance you’ll survive.”  But no one has told me anything like that. I guess it’s because all cancers are different.  Your neighbor’s cancer is not your own.  This is also why Googling for information is useless.

Maybe there is a scientific study somewhere of a large number of cases just like mine.  That would provide useful information.  But for now I don’t want to look for it.  I don’t want to think in terms of probabilities.  I have my treatment to go through, and I’ll worry about probabilities when I perk up again and feel less vulnerable.

For now what I go by is what professor Ko, my surgeon, told me: that he has operated on previous cases of metastases in the lymph nodes and that they have survived.  But then professor Ko adds, “lets hope you’re outcome will be as positive”; “lets hope for the best.”  And then my heart sinks yet again.  I don’t want to hope.  I want to know for sure.  But of course that’s very childish.  Grown-ups must learn to live with uncertainty.

Back when I thought I had very little time left, a 50% chance of living three more years sounded like great odds.  Now, when I’m starting to think I’ll pull through, a 50% chance of living three years sounds abysmal.

Sometimes, in my darkest moments, I suspect that everyone, including Diane, is participating in a conspiracy of optimism: “lets hide the truth from him as long as possible!”  “It’s better if he doesn’t know!”

Wednesday, September 03, 2008 Erik No comments

This is the food I really, really can’t stand:

  • Chinese eggs cooked in tea (to be found in every 7-Eleven in Taiwan — their smell is perfectly nauseating)
  • rice — even the plainest, simplest and whitest kind
  • milk shakes
  • anything spicy — including Thai and Indian food
  • soy milk
  • noodle soup
  • intestines, pork hearts, chicken legs, duck necks (yes, the Chinese love it; it makes me wretch)

IKEA meatballsThis is the food I crave:

  • sausages — preferably fried
  • potatoes — preferably mashed
  • brown sauce — on everything, all the time
  • cheese
  • bread — soft, white, newly baked
  • macaroni, pasta, spaghetti

Strange, isn’t it? These lists say nothing at all about my normal preferences.  I very happily drank frothy milkshakes only last week and I haven’t had a sausage since we moved from London. The simplest answer may be that my treatment makes me like more plain food.  But that can’t be true since rice is included with the aversions.  What could be plainer than rice?

What seems to have happened is that I’ve reverted back to my Swedish childhood.  What I like to eat is the food my mother served me as a kid.  Conversely, what I can’t stand is everything I’ve eaten since about age 14 — all those exotic, “tastes-just-like-chicken,” dishes.

But why?  Maybe it’s a matter of comfort.  I feel more comforted by the first flavors I ever experienced.  But, if so, where did this memory suddenly come from?  And how did the chemotherapy come to interact with my memories in such a way that I suddenly wanted to eat this childish stuff? Someone should do research on this topic.

Saturday, September 06, 2008 Erik No comments

My student Tsungyi and his fiancée are getting married today.  Many happy years to them!  I would have liked to go to the party but I’m too tired, and also I’m afraid I will jinx the occasion.  Chinese people are big on happiness at weddings.  They don’t want people around who remind them of death.  But Diane is going, and our four daughters.  They have all bought new dresses.

The happy newly-weds are off to Florence, Italy.  Tsungyi will be doing research for a PhD at the European University Institute.  Why have a honey-moon if you can have a honey-year?

Saturday, September 06, 2008 Erik No comments

week 2Another week of treatment just started.  The weekend was great.  I listened to BBC Radio 4 on the computer and recuperated.  Yes, my mouth is dry but I’m very far from dead yet.

Sept 1, Monday: I saw Doctor Ding, my radiation doctor, today.  She checked my mouth and seemed happy enough with me.  I’ve lost one kilo since last week but that’s OK.  She asked me what drugs I wanted but I couldn’t really think of any.  I asked her about the chemo.  In Sweden, it turns out, they don’t use chemo for treating my condition.  “Yes,” Dr Ding said, “we didn’t either until about ten years ago, but the chemo makes the radiation more efficient.  We get better results.”  Better results are good.  Maybe the Swedes have something to learn.  The radiation session was more of the same.  They did some kind of CT scan to keep a record of my progress.  Back home again I felt stiff and sort of incommunicado.  Too bad, I was pretty cheerful this morning.

Sept 2, Tuesday: Big day today: two doctor’s appointments, radiation and chemo.  Doctor Hong, my chemo doctor, liked what he saw: “You’ll make a great recovery.”  Someone in the waiting room said he is the best oncologist in all of East Asia.  It’s not quite clear how you decide that a certain doctor is “East Asia’s best,” but I’m prepared to believe it.  The chemotherapy itself went well.  This time I knew what to expect: a needle in my hand and four hours of liquids.  Luckily I brought Saga’s MP3 player.  My oldest daughter’s taste is very retro: it was full of Bob Dylan, Blondie, Amy Winehouse — and some Tim Minchin that I added.  Before I knew it, I was off to radiation.  A visit to professor Ko rounded off the day.  He too was happy with me.  The cut from the tonsillectomy has healed up nicely; the gash on my throat is turning into a proper scar.  “My throat is still stiff,” I complained, “and numb.”  “Of course, what do you expect. I just operated on you.”  When I left Ko did that little hand squeeze that’s so endearing.  “Don’t worry too much, OK!.”

Sept 3, Wednesday: easy day today — no doctors, no chemo, only radiation.  I felt great in the morning, but stiff and tired coming back in the afternoon.  I’m developing a burn on my neck.  Diane is applying creams.  Seems to help.

Sept 4, Thursday: my friend Tsungyi took me to a book publisher today before my treatment.  They are bringing out my blogging book in a Chinese version.  Fun, although no one in Taiwan buys anything else than self-help books — and a self-help book it ain’t.  After the radiation I was so, so tired and all stiff.  Diane took me straight home before she went shopping with the girls.  The electricity to our garage door isn’t working which means we have to park far away and carry all the shopping up all the stairs.  Our house, like so many in Taiwan, was scrappily designed by unscrupulous contractors.  Diane is juggling far too much at the moment.  Poor baby.

Sept 5, Friday: the treatment is starting to really bite.    I was grouchy and tired all morning.  A layer of skin has been peeled off inside my mouth.  I can only eat the softest things — scrambled eggs, fruit cocktail.  They are rebuilding the room next to the radiation room at the hospital and the smell of putty and wet cement is completely nauseating.  I perked up in the evening.  I’m self-medicating with Ibuprofen.  Great stuff.  Let’s hope I can recover a bit over the weekend.

I survived the second week.  It was quick in some ways, but the treatment is starting to have a real effect.  I’m lethargic and it’s much more difficult to eat.  For the first time I can actually imagine that staying in the hospital would be a relief.  But we’re not there yet.

Sunday, September 07, 2008 Erik No comments

I’m starting to really resent the linear accelerator, the large radiation machine.  There I am, strapped down, with no means of defending myself, as it circulates around my head for ten minutes a day, bombarding me with laser beams that make my throat, my mouth and gums swell up.  I leave the machine after 10 minutes all warm, red and throbbing.  On the train on the way back home my stomach begins churning and I have to focus all my attention on not throwing up.  Later in the evening, the swelling goes down and instead I dry out.  I get drier and drier, to the point where the tissue in my throat cracks and starts bleeding.  Waking up in the morning, I dread returning to this machine.  I know it’s going to hurt me again.

This of course is also the machine that’s going to save me.  This technology is my best hope of a permanent recovery.

Modern society is like modern medicine.  Societies too are strapped to technologies that damage us while promising salvation.  We are all the subjects of machines, hurt and then saved by the inhuman.

Sunday, September 07, 2008 Erik No comments

I’m back from the big hospital in Taipei.  Everything’s fine.  Fine, fine, fine.  I wasn’t so sure at first.  Dr. Hong studied the X-ray of my lungs with great attention.  But then he turned to me and said: “the shape of your heart indicates that you have problems with hypertension.”  Now an oncologist who talks to you about blood-pressure is an oncologist who has nothing serious to talk about.  “Yes,” I admitted, “I’ve had problems with hypertension for a couple of years.”

Leaving Hong’s office is suddenly dawned on me: “it’s over,” it’s all over, the cancer is gone, I’m a normal person again, with a normal persons different aiments and complaints. A normal person is good.  All I wanted to be a year ago is a normal person.  Now it’s happened.  I’ll have many, many more years to live.

Monday, September 08, 2008 Erik No comments

manguoOutside of my study there is a little balcony with a mango tree in a pot.  We bought it in the flower market in town a year ago — mangoes, to me, are such a symbol of exoticism and the tropics.  Since I haven’t properly been to my study since I was diagnosed with cancer in July, I haven’t looked at the pot.  Today after taking a slightly awkward cat-bath of a shower, I suddenly noticed the tree had a new plume of bright green leaves.  I filled up a bucket with water and poured over it.  It drank greedily.  It’s still warm outside — over 30 Celsius — but the sun is less powerful than a month ago.  The earth in the pot smelled heavy and rich, like the earth where I used to dig for worms as a kid back in Sweden.  I gave the mango another dousing of water.

I thought about those sprouting green leaves all through the radiation today.  Water, water, water — and new life.

Wednesday, September 10, 2008 Erik No comments

This is a jar of amino acids that Doctor Ding strongly recommends.  Amino acids help build cells and the idea is that a table spoon of this powder three times a day will help save my mouth.  But it’s not working.  Doctor Ding was most surprised. “Are you taking it in hot water?” she asked.  “No,” I replied, “I take it in Hey Song” (a Taiwanese kind of Sprite).  Doctor Ding smiled and shook her head.  What a foolish patient!  “Well, take it in ordinary water and it’ll work.”

Curious I asked my uncle back in Sweden.  My uncle is a retired ear/nose/throat professor at the University of Umeå.  “No,” he replied via my aunt, “we don’t use amino acids this way in Sweden.”

I certainly have full faith in my doctors and I don’t necessarily think the Swedes are right in everything they do.  But it doesn’t seem that mixing the powder with plain water is making a lot of difference.  None of this would be a great deal if the stuff wasn’t so darn expensive.  One jar costs 7,800 NT. This is 243 US dollars, 138 GBP, or 1,638 Swedish krona!!!  And it only lasts for about two weeks.  (Since it’s not considered “medicine” but rather an “health aid,” it’s not covered by the Taiwanese national insurance — and rightly so I think).

Should I go on taking this stuff or not?  It’s not the money really.  I’d pay double if it actually helped.  Could there be a difference between the way in which Taiwanese and Swedes metabolize amino acids?  Maybe it’s just not right for tall blond people?

Wednesday, September 10, 2008 Erik No comments

I now know my limits as an adventurer.  I can’t simultaneously live on a little tropical island in the South China Sea and go through cancer treatment.  I have to face one challenge at a time.  For now, the cancer is more urgent.

In order to deal with it, I’ve almost completely sequestered myself in a European world.  I read British and Swedish papers online and I leave BBC Radio 4 running live throughout the day.  I’m in better contact with my Swedish family than I’ve been for years.  When Diane drives me to the High Speed Train, I can’t understand why everything suddenly looks so Chinese.  When I write an email to my wonderful Chinese teacher to update her on the situation, I use English.  How embarrassing is that!!!

My cancer taught me that I’m a wuz.  I can only face one challenge at a time. First cancer, then Chinese (fighting cancer just might turn out to be slightly easier than learning Chinese, lets hope so anyway).

Thursday, September 11, 2008 Erik No comments

 

I’m starting to worry about Pakistan.  The security situation there has deteriorated significantly in the last couple of months.  Yes, the Taliban are on the move in the tribal areas to the west.  The country has a new, West-leaning president, Asif Ali Zardari, the widower of Benazir Buttho.  Clearly he is in it over his head.  On BBC they asked about his credentials and a local commentator said “until six months ago he was mainly known as a polo player.”

Today’s New York Times reveals that George Bush has given a secret go-ahead for American military strikes into Pakistani territory.  This is surely the best way to make sure that the new president is toppled.  What comes after him is everyone’s guess, but it’s surely bad news if it’s someone radical and militant.

If that comes to pass, we would — as a result of the Republican mismanagement of foreign policy and seven years after 9/11 — have a radical, militant, Muslim regime with access to their own nuclear weapons.  I wonder what they will do with them?  Of course they can be used to blackmail various neighboring countries, but surely they could also be used in more far-flung attacks.  America comes to mind …

This is what happens when fools and ideologues are in charge of the world.  The upcoming American election presents an opportunity to get rid of a lot of fools and ideologues.  If Americans let themselves be mislead by Palin nonsense and McCain ads, and don’t seize this opportunity, it’s difficult to say that they don’t get what they deserve.

No, no, that’s not fair.  All the wonderful Americans who vote for Obama and for sanity, don’t deserve this.  I wish there were nuclear weapons that only wiped out Republican voters.

This, btw, is a very good piece: Jonathan Freedland, “The World’s Verdict Will Be Harsh If It Rejects the Man in Yearns For.”

Saturday, September 13, 2008 Erik No comments

week 3The third week just started.  I have exactly one month to go.  The real count-down can begin.  I had hoped I would bounce back over the weekend, but instead I seem to be continuing down a path of steady decline.  Well, it’s far, far to the bottom.  Vulnerable and a bit worried, I keep on walking straight into the whirlwind.

Sept 8, Monday: I complained to Dr Ding about the rapid deterioration of my mouth and she asked me to open wide.  “Yes, there is indeed a reaction.”  She prescribed anti-inflammatory pills, sprays, antacids for my stomach, and, for good measure, a dose of sleeping pills.  Dr Ding is full of authority, but most of all she reminds me of a cake-baking aunt in a movie.  All radiology doctors should be required to bake cakes.  My return to THE MACHINE was fine in the end.  Just more of the same.  I came back home on the train quite happy, with a large bag of medication.  Yes, and I lost two kilos since last week.  I promised Dr Ding I would try to eat more.

Sept 9, Tuesday, 2 AM: My bleeding throat woke me up.  I gargled, I took pills.  But what really sent me back to sleep again were two bowls of chocolate icecream.  Wonderfully cool and smooth.

Sept 9, Tuesday: “It’s a severe reaction,” said Dr Hong, my oncologist, “but since there is no narcosis yet I think we’ll continue the treatment.”  “Nar …what?” I asked.  “Narcosis!  You know, when you just sleep all the time.”  OK, I thought.  Let’s just wait for the narcosis to set in.  Gaawd!  But no matter how bad I feel, my cancer must be feeling worse.  Back home Diane made tuna sandwiches for dinner, and pasta and scrambled eggs, but I couldn’t eat any of it.  Bread is too dry and tuna is too acidic.  I stuck with my chocolate icecream. Tomorrow I’ll start on the nutrition drinks.  I always knew that day would come.

Sept 10, Wednesday: The chemo went well, mainly due to a well-stocked MP3 player.  I haven’t listened nearly enough to good music the last few years.  I’m discoveringLilly Allen (daughter’s pick).  In addition to the chemicals, they pumped me full of plain old H²0.  I’m big on hydration.  It made me feel good.  During my radiation session Diane talked to a man who went through my exact treatment some six weeks ago.  Initially he made the mistake of eating only ordinary food, he said, and had lost 9 kilos in a few days.  It left him all weak and shriveled up. “But then they put in the nose tube and I felt much better.  My wife filled me up with nutrition.  Tell your husband not to be afraid of the nose tube.”  What struck Diane the most was how gloriously happy he was.  The ordeal is over, he is well, and now he is just going around hugging perfect strangers.  I’ll do that too.

Sept 11, Thursday: I woke up all parched as usual, but a bowl of icecream perked me up.  Easy day at the hospital: only radiation.  Came home pretty content.  The slippery slope down to decrepitude isn’t so slippery and not so slopy.  Diane is sending off her PhD tonight.  Finally, after all these years!  She’s off printing it all out at my work right now.  The kids are running amuk downstairs, eating chocolate biscuits in front of the TV instead of dinner.  They know they shouldn’t and they are very excited. Poor Di, she’s had too much to do the last couple of weeks: four screaming children, a husband with cancer, and a PhD to complete.

Sept 12, Friday: Diane came back home at 4 this morning.  She finished her thesis, she’s printed it out, all that remains is to punch holes in the pages and to mail it all off.  The two copies fit perfectly in the empty cardboard box of my Ensure protein drinks.  Congrats to her, what a gal!  Today’s treatment hit me hard and my mouth was all cut up in the evening.  I’m applying jells.  “Super typhoon” Sinlaku is poised to hit Taiwan.  Everyone’s upset since it will wash away the Moon Festival also scheduled for this weekend.

I’ve survived another week.  The beginning was hard and so was the end.  The middle was OK, mainly due to the chemo irrigation.  This time next weekend, I can almost start looking forward to the end of this thing.

Sunday, September 14, 2008 Erik No comments

confuciusEver since my operation I haven’t bothered to shave.  When you have a large gash going from your ear to your chin you don’t particularly feel like shaving.  As a result I’ve become fairly hairy.  It’s not a beard exactly since it’s too scraggly, but it’s definitely facial hair.  My almost-a-beard is a great source of amazement to everyone at the hospital.  Chinese men, in general, don’t do beards very well (cf. Confucius to the left).

But now it seems my facial hair is going.  My bed looks like a shaggy dog had slept in it — hair everywhere.  It’s not the chemotherapy that’s having an effect, but the radiation.  After all, they are shooting me pretty hard each day on both sides of my neck.  If they want to get to the cancer, a few follicles aren’t allowed to stand in the way.

The hair on top of my head, I’m happy to report, shows no sign of going anywhere.

Sept 18th update: the hair on my head is actually starting to come off.  In big tufts.  I was too self-confident.  Should I start wearing a bandana?  I think not.

Sunday, September 14, 2008 Erik No comments

Now I’m down to eating only oatmeal porridge — what Swedes call gröt.  I had oatmeal for breakfast, lunch and dinner yesterday and for breakfast and lunch today. And I suspect there’s more oatmeal on the menu tonight.  A bowl of oatmeal has most of what you need for survival — stomach filler, lots of milk, big wallops of jam; carbohydrates, liquid, protein, vitamins.  And  I can just about get it down my swollen gullet.

In addition, oatmeal is Swedish peasant food and hence a great comfort food for me.  I ate it all the time as a kid, and always on Saturdays when my mother was away at work and my father was in charge of cooking.  My father had a theory that all food ultimately can be reduced to gröt.  Oatmeal is the basic stuff of which all other foods are made.  Given his theory, there was really no reason to eat other things, and towards the end of his life he didn’t.  My father virtually died with the gröt spoon in his hand.

And you know, it feels like the oatmeal actually helps my dry mouth.  I looked it up, and it turns out oatmeal is used to help people with eczema and other skin problems.  But I’ve never seen any references to oatmeal in connection with radiation treatment.  Now every meal is like a medical experiment.  I’ll suggest it as a research paper for doctor Ding when I meet her tomorrow.

I’ve done some etymological research too — I now know exactly what it feels like to be “mealy mouthed,” to have oatmeal in your mouth all day.  It’s soothing, but no one can really understand what you’re saying.  {In Swedish, incidentally, you can say that someone speaks with a grötig röst, meaning”porrigy, outmealy, voice”}

Wednesday, September 17, 2008 Erik No comments

So, the American government — the George W. Bush, Republican administration — has now nationalized A.I.G., American International Group, the largest insurance company in the US and the world’s 18th largest company.  Ha, ha, ha, ha!!!  Can the Republicans now go on arguing that “the government is the problem, not the solution”?  Or will they finally have to concede that their government only is intended to work for the rich?  Perhaps this is what they call “socialism with American characteristics”?

Of course there must be free markets, but of course those free markets must have strict limits.  Otherwise we’ll always and continuously end up in pickles like this.  Europeans have known this for years, and East Asians — well, pretty much every one but the Americans.

Did you know that A.I.G was founded by a man called Cornelius Vander Starr?  In 1919, Starr made his first pot of gold selling insurance in Shanghai, China.  Maybe the American government now will be forced to sell A.I.G. back to the Chinese. Ha, ha, ha, ha!!!

Friday, September 19, 2008 Erik No comments

This is a short list of the different drugs I’m taking at the moment.  None of it is heavy stuff, but there is a lot to remember:

  • Oralbalance, “dry mouth moisterizing.”  It’s a gluey, slightly sweet-tasting, paste I put on my toungue at night and whirl around in my mouth.  It doesn’t work that well.
  • Novamin, a little pill I’m supposed to take 30 minutes before every meal, but I usually forget.  I think it’s supposed to eliminate nausea induced by the chemo.
  • Prometin, an even smaller pill I’m supposed to take 30 minutes after each meal.  It’s also supposed to deal with nausea, I think.  I almost always forget to take it.
  • Physiomer, French-made nasal spray I use in the evening.  Claims it contains eau de mer naturelle.  I wonder if it’s the Atlantic or the Mediterranean?  I would prefer the Atlantic.  The water is deeper there and the fish are bigger and feistier.
  • Sympt-X, the notorious $238 dollar jar of amino acids.  I’m supposed to dissolve three scoopers a day in ordinary water.  I’m still not convinced it actually makes a difference, and I don’t think I’ll get another jar when this one runs out.
  • Alpraline, a little orange sleeping pill.  Not very powerful, but nice to have around.
  • Halcion, little blue-gray sleeping pills my mother sent me over the mail.  They aren’t very strong either and I usually take them after I wake up at 2.30 at night.
  • Comfflam, a spray for inflamed mouths.  It’s a green, slightly minty, slightly alcoholic, liquid.  It works great when I’m in need of a quick fix.  It has a long nozzle which makes it possible to spray right in the very back of my mouth.
  • Nacid, regular pills against volcanic stomach.
  • Mycostatin, the notorious anti-fungal mouth medicine.  It comes as a dry powder at the bottom of a little bottle.  You add water and shake it around.  It tastes and looks a lot like curdled milk.  I’m taking it every six hours — including at 2.30 at night.  It really, really works.
  • Acemet Retard, anti-inflammatory, green and white pills.
  • Tinten, regular acetaminophen painkiller.
  • Biotène, French mouth wash, with calcium.
  • Ibuprofen, regular over-the-counter painkiller.  A do a bit of self-medication with this when I feel particularly rotten.
  • Diovan and Norvasc, a little red and a little white pill against high blood pressure.  Works great.
  • Centrum, A to Zink.  These are just regular vitamin pills.  I would take more than one a day, but Dr Ding insists I shouldn’t overdose on vitamin E.
  • In addition, of course, I get the chemotherapy.  The main component here is something called Cisplatin but they also give me all kinds of steroids and things (Primperan, Kytril, Rinderon, Prometin, Novamin and Sodium Chloride).
Friday, September 19, 2008 Erik No comments

week 4The past weekend was Moon Festival, one of the four big holidays of the Chinese calendar.  In Taiwan they usually celebrate it with a family barbecue.  But this year everything was washed away by a big typhoon.  As for me, I’m still hanging in there.  The coming week will be crucial.  At the end of this week, there will only be two more weeks to go and I can start to look forward to the end of this ordeal.

Sept 15, Monday: Doctor Ding Day today.  It turns out I have a fungal infection in my mouth.  It’s too nasty to discuss in any detail, but it really hurts and makes it difficult to eat, drink and talk.  I got extra medication.  Yeah, and I lost two more kilos.

Sept 16, Tuesday: Regular radiation session and two doctor’s visits.  Professor Ko first.  He is such an irrepressible guy.  “You must come,” he insisted to Diane as he sprayed local anesthesia down my gob, “look at his mouth: it’s extremely red.”  Diane averted her eyes while pretending to look.  “It’s a normal reaction,” said Ko.  “Do you want to be admitted to the hospital?”  “No, not yet,” I replied hesitatingly.  Doctor Hong was next.  He had reports from a blood sample I gave yesterday.  “太好了 — too good,” he said.  “You don’t need to do a blood sample next week.”  I guess it must be all those walnut-wheatgerm-dragonfruit-banana milkshakes I had before the treatment started.  Today was the mid-point.  I now have less to go than what I’ve done.

Sept 17, Wednesday: The chemo day has become my favorite day.  Since I find it difficult to drink as much as I know I should, the liters upon liters they pump in as a chaser with the chemicals are very much appreciated.  I perk up like a wilted flower.

Sept 18, Thursday: I really am losing my hair!!!  Oh no!!!  I sort of scratched my head this morning and a big tuft came off.  And I was so proud of my Sampsonian strength.  Well there are only two chemo sessions left and a lot of hair to go.  It’ll be a race against time.  Despite the hairloss I felt great in the morning, but tired, and literally, burned out in the evening.  Today was two months since my diagnosis.  A lot has happened.  A very short time, but also very long.

Sept 19, Friday: Friday is always the hardest day.  Maybe because the effects of the radiation has built up during the week.  But I’m OK and it’s over now.  Another weekend lies ahead of me.  No one is going to shoot radiation guns at me for two whole days.

Saturday, September 20, 2008 Erik No comments

We thought Diane was pregnant.  We really did.  After all, we know a few things about being pregnant, and when Diane misses a period and develops a craving for hard-boiled eggs, we know what’s going on.

“OMG!” was my first reaction.  “What a soap opera!”  “Welcome to the Ringmar Family — a husband with cancer, a wife large with child, and four little girls trailing behind.”  The scene was easy to imagine: I’m laying there on my death bed when Diane comes in to show me our new-born.  “What should we call her?” she asks.  “What about Mei?” I suggest as I draw my last breath.  The End.  Fine finito.  What a badly written tear-jerker!

Well, it’s not going to happen that way.  No more babies.  No one is dying.

doskalleWhen we were in the hospital after my operation there were a few days when we were forced to confront the prospect of death.  For a while the doctors thought the cancer had spread to my lungs and my liver.  When you stare death straight in the face like that, you know you sooner or later will blink.  Death doesn’t blink.  Death doesn’t do deals.  There’s no stalling.  And there is absolutely nothing you can do about it.  You’re completely powerless.

Or so we thought.  But of course there is something you can do about it.  You can do what we unwittingly ended up doing.  When facing death, create life.  Show the bastard that two naked human beings are stronger than all his well-equipped armies.  It’s the only response, but it’s also the perfect response.  Death blinked after all, before we did.

Diane had her period in the end (it often happens like that with women over 40).  And it’s a good thing too.  We’ve done babies and we’re too old for any more.  Four kids is plenty, believe me.

Although it’s a magical thought and not a medical, I’d like to think that it was our pro-life recklessness that scared away that monster.  Now he knows not to come back here and bother us again.

Sunday, September 21, 2008 Erik No comments

marlboro manEveryone knows you shouldn’t smoke.  But there are different ways of knowing things.  Everyone also knows that it hurts if you hit your thumb with a hammer.  Still, you know this fact in a completely different way if you actually take a hammer and whack your thumb as hard as you can.

If you come with me to Dr Hong’s clinic on a Tuesday, I’ll whack your thumb for you.  Dr Hong’s specialty is cancer of the neck and throat.  He sees some 150 patients in a day, and most of his cases are terrible.  Waiting our turn, we’ll see the man with a hole in his throat where he inserts the feeding tube; the woman who not only drags two small children along with her but also an oxygen tank; the man who only can make grunting noises since they took away his vocal cords; the young guy who’s every breath sounds like someone is blowing air into a paper bag.

Yes, I too was a smoker.  In the last year of high-school I met my first girlfriend.  She was French; she read Jean-Paul Sartre; we skipped classes together, had sex, listened to Leonard Cohen, and talked about poetry.  I had never known anyone like that or talked about those things before (I had never skipped a class either).  For a little boy from northern Sweden, this was the life, this was freedom.  I was becoming my own person.  My first girlfriend smoked, and I smoked with her.

After we parted ways, I took the new habit with me. I used snus — Swedish chewing tobacco — and eventually I graduated to nicotine gums.  But I had no illusions.  I always knew how dangerous it was.  I cursed myself daily for being such a self-destructive fool.  Still, I just couldn’t stop.

When Doctor Ko’s assistant registered me at the hospital in Taipei, I told him an abbreviated version of this story.  ” But I have been completely nicotine free the last 15 years,” I proudly concluded the tale.  There were two boxes at the top of the registration form: one for betelnut chewers, the other for smokers.  “OK,” said the assistant and shrugged his shoulders.  To my great relief he didn’t tick the “smoker” box.

So there is no official link between the sins of my youth and my illness.  Officially I can escape blame.  Still, my cancer has taught me in a completely new way something I always knew: whatever you do in life, don’t smoke!

Sunday, September 21, 2008 Erik No comments

I spend a lot of my time dreaming.  In your dreams you are free, not confined to a body and a bed. Right now I’m building a house in Puli.  Puli is a town among the high mountains of Taiwan.  It’s famous for its mild weather, its delicious water and its beautiful women.  Puli also has many Buddhist temples and retreats.

I just bought a large piece of green pasture here and I’m building a Chinese-style teahouse.  Everything is calm, clean and beautiful.  My children are biking around, flying kites, and I’ve bought two small yappy dogs.  I meditate in the nearby temple every morning and talk to the old monk. We buy broccoli and spinach at the market.  Diane is teaching English at the local university, and I make the two-hour trip down to Hsinchu twice a week.

With the help of the internet, I invite people into my dream.  I contact contractors in Indonesia who assure me they can build a nice wooden structure for us; I contact a professor at Puli university about coming to give a lecture; I’ve found a Buddhist elementary school for our two youngest daughters.  Checking web pages and writing emails takes most of the day.  I’m very happy.

There is a great Bo Dylan song on this theme — “Highlands,” from 1997:

Well my heart’s in the Highlands wherever I roam
That’s where I’ll be when I get called home
The wind, it whispers to the buckeyed trees in rhyme
Well my heart’s in the Highland,
I can only get there one step at a time.

Well, my heart’s in the Highlands at the break of day
Over the hills and far away
There’s a way to get there, and I’ll figure it out somehow
But I’m already there in my mind
And that’s good enough for now

In 2007 Dylan eventually bought a house in the Scottish highlands.  I’ll buy my Puli house in the spring next year.  “But I’m already there in my mind/ And that’s good enough for now.”

Monday, September 22, 2008 Erik No comments

week 5I stayed in bed most of this weekend.  I was very tired and very dry, but there are only two and a half weeks to go.  The weekdays have a way of passing quite quickly once they start.  Lets hope that’s true for the coming week as well.  I have now had oatmeal twice a day for nine days.

Sept 22, Monday: Doctor Ding Day! My fungal infection has disappeared and we’re all very happy about that.  I’ve lost another two kilos – seven altogether – and Ding insists that she’ll insert a feeding tube through my nose next week if I’ve lost any more.  Had some egg-drop soup for dinner.  Pretty good really.

Sept 23, Tuesday: Slept well and felt OK in the morning, but I complained to Dr Hong about my stiff neck.  “It’s fibrosis,” he said.  “Once you’re done with the treatment, you can eat vitamin E and that should help.”  After today’s radiation session it was impossible to straighten my head.  People on the Taipei subway looked at me funny.  Fibrosis, huh?  But then it struck me: Hong talked about “after the treatment”!  “After the treatment,” what wonderful words!  One day, soon, this ordeal will be over.

Thursday, September 25, 2008 Erik No comments

Reading the diary entries concerning my treatment might give you the wrong impression.  It sounds like I’m lying there in bed, propped up by lots of pillows, while Diane gently wipes my beady brow and the kids carry drinks and medication. It sounds cozy; romantic even.  But it’s nothing like that at all!

Instead I’m tired and angry most of the time, and when the fungal infection hits me I’m downright mean.  I talk in a strange cackle and sometimes in a trumpeting cry.  I sound weird and I sound scary.

I pick fights with Diane.  “No,” I say, “the oatmeal isn’t cooked long enough.  You must cook it.  Cook it.  What’s wrong with you woman?”  Scared she runs off and turns on the stove once again.  When she comes back with the steaming bowl, I’m just staring into blank space.  I’m staring and staring until the oatmeal gets stone cold.  “It’s too cold,” I say in my strange cackle, “I can’t eat it.”

As for the kids, I haven’t seen Saga for a couple of weeks.  Maybe she is scared of me too.  (I remember being scared of my own father when he had cancer — I didn’t want to see him like that; I just wanted to run away).

Yrsa peeks in through the door with a cheeky smile.  “Are you dead yet?” she asks.

Then Rima comes in asking me to fix a broken toy.  I gesticulate to her.  “Rima, Rima, I’m sick. There is nothing I can do for you.  Go away!”

The only person who isn’t bothered is Beata.  She sits down on the bed beside me and starts telling me about her day.  Care and compassion come naturally to her.  She simply wants to be with her sick father.  I listen to her talk about homework and friends.  But then I pick a fight with her too.  “Beata,” I say.  “Your hair is too long.  You’re such a beautiful girl, but you need to get a haircut.”  I know this is a sensitive topic, and I know it makes her angry.  She walks off in a huff.

See, what I mean?  There is nothing romantic about going through cancer treatment and I’m an ungrateful, impatient, patient.

Monday, September 29, 2008 Erik No comments

We were invited to an Obama fund-raiser in Taipei.  Diane was very excited about it.  “Finally,” she said, “a chance to meet some reasonable Americans.  All Obama voters are my friends.”

I’ve never donated to a political campaign before.  In Sweden, political parties are funded through taxes and giving money to a political party is a bit like giving money to a government agency like the Dept of Motor Vehicles.  You just don’t do it.  I always took a position in American political debates — always Democrat — but I never felt compelled to hand over my savings before.  After all, it’s not my country and not my problem.

This time around, however, it’s different.  The Bush years have not only been bad, they have been disastrous, and not only for America, but for the whole world.  Besides, there has not in my life-time been a more qualified Democratic candidate than Barack Obama.  It’s very important that he wins, and I’m very happy to support that.  With money too.

Here is an interesting question:  if you knew for sure that your donation would guarantee the victory of your candidate, how much would you be prepared to give?  I discussed it with Diane and we decided, as a family, if it’s an eight year term, we’d be happy to pay 24,000 US dollars.  It’s only $500 per family member per year — a cheap price for the opportunity to wake up every morning as proud Americans.

In the end, we didn’t go to the fund-raiser in Taipei.  I’m not very mobile and Diane is too busy caring for me.  And of course our donation won’t magically assure Obama’s victory.  Still, we want to help out and we sent him $100.  Obama accepts donations of $5 too.  It’s easy to pay online (but, legally, you have to be a US citizen).

Thursday, October 02, 2008 Erik No comments

week 6This is the round-up of the sixth week of my treatment.  No, there isn’t much time left, but it’s going to be the most difficult part.  I find it very hard to talk and to eat.

Sept 29, Monday: another typhoon has arrived and schools and jobs are closed.  My daughters are very happy.  My friend Mei-hong emailed to say that only emergency services are open at NTU Hospital.  Too bad.  I don’t want to postpone treatment even one day.  I want to get this done now.  But in Taiwan there is no arguing with a typhoon.  Btw, it seems the fungal infection in my mouth has returned.  It really hurts and it puts me in a rotten mood.

Sept 30, Tuesday, morning: I can’t speak this morning and I can’t eat or drink.  The fungal infection is twisting my mouth.  I’m seeing Professor Ko in the afternoon — if I only can make my way to Taipei — and we’ll see what he says.  Maybe I should ask to be admitted to the hospital?

Sept 30, Tuesday: “Fungal infection isn’t the problem,” says professor Ko when I meet him.  “You have mucositis.”  Aha!  I have indeed read about mucositis.  So that’s what makes my gums bubble up and what twists my mouth! “It’s stage 3 of radiation damage,” says Ko, “but don’t worry, there is a stage 4 too.”  When I leave, professor Ko gives me a little bottle.  “It’s the best thing around — cocaine!  You know, coke!”  After the radiation session I meet Dr Hong.  “You need more painkiller,” he says.  “You need something strong.”  And then he gives me a 500 ml bottle of liquid morphine!  Leaving the hospital, the street value of the contents of my bag has multiplied about 5000 times.  Only class A drugs, only the best.  Bless all those hard-working peasants in Colombia and Afghanistan!  Btw, my doctors don’t seem to think that I need to be hospitalized. But taking no chances I went home by wheel-chair — at NTU you can just borrow a wheel-chair, if you need one, free of charge.  Diane is learning how to push me around (in contrast to most wives, she’s never done a lot of that).  Problem: I didn’t eat enough today, hardly anything at all.

Oct 1, Wednesday: Today was, believe it or not, the last chemotherapy session.  I’m doing radiation next Wednesday, but no chemo.  I won’t miss it exactly, but chemo has been OK.  It’s calm in the chemo room; I listen to music; they pump me full of water.  Today I asked for an extra liter of H2O — and since I didn’t go to the bathroom for hours, the nurse called in a doctor to investigate where all the water was going.  Clearly I was dehydrated.  Btw, the chemicals didn’t make me lose my hair in the end.  There are two bald patches behind my ears, but other than that the hair seems to be staying.  Great — I never looked good in a bandanna.  We came home late.  I hope I can get some oatmeal down.  Six treatment days to go.

Oct 2, Thursday: Bless my new wheel-chair.  Diane wheels me from door to door and everything is easy and quick.  Bless my new drugs.  I’m relaxed and I have nice dreams.  I’m eating much better.  Tonight Diane made home-made salmon soup for dinner.  I couldn’t taste it really, since all my taste buds are shot, but it smelled great and above all — it went down and stayed down.

Oct 3, Friday: Easiest Friday for weeks thanks to my wheel-chair and the new drugs.  I just sat down in the chair and Diane took care of the rest.  To everyone around me I must have looked all zonked out, and I guess I was, but it’s better to be zonked out than wide awake and in pain.  I don’t mind sleeping my way through next week.

I spent most of the weekend catatonically staring in front of me.  It’s so extraordinarily difficult to get things done.  Even drinking a glass of honey water takes two hours.  I can’t speak anymore.  I communicate with Diane by shaking or nodding my head.  My friend Meihong took care of the children on Sunday.  They went to a movie, went biking and had bagles.  They came home very happy.  The appointment card is almost full now — but only 4 stamps this week since Monday was off for typhoon.

Friday, October 03, 2008 Erik No comments

rullstol i TaipeiGoing home from the hospital Tuesday this week, I really didn’t feel like navigating the Taipei subway and the High Speed Train stations on my own.  I felt too weak.  But as it turns out, it is easy to borrow a wheel-chair from the NTU hospital.  And I’ve been using it ever since.  I always felt sorry for people in wheel-chairs.  They look so sick and unable to take care of themselves.  But if you are sick and unable to take care of yourself, a wheel-chair is great.  I’ve got wheels!

I get into the chair as soon as we arrive at the train station, and after that I just sit back and relax.  Diane pushes me up ramps and down ramps; onto platforms, into elevators and across streets.  It’s great, I can finally see some more of the world — not only nurses and doctors, but ordinary people doing ordinary things. Yes, we’re quite a sight: a big, blond, foreigner, in a wheel-chair, wrapped in a blue blanket, with a face mask to protect him against germs.  And then that tiny, glamorous-looking, wife trying to push him around.  Half of the people are backing off, but the other half are very helpful.

Taipei is actually quite accessible by wheel-hair — much, much better than for example London.  It’s not very far from Taipei’s main train station to the hospital, and there is only one place where I have to leave the wheel chair and stand up in an escalator.  Each time we get there, people inevitably rush up to help.  When it turns out I can stand by myself they are disappointed.  “A faker!  Look he can stand!”

Actually, I would encourage you all to fake it.  Borrow a wheel-chair and go around your own town for an after-noon.  You’ll see the world from a totally different perspective.  Above all, you learn what an insurmountable obstacle even a ten centimeter high cement ledge can be.  Above all, an afternoon in a wheel-chair should be a compulsory experience for all architects and city-planners.

Transported like that, from place to place, I close my eyes.  Especially after the radiation session, on the way home, when the new dosage has inflamed my throat and made me sleepy.  I hear people’s voices, the sound of cars, blaring music from shops. I’m whirling around in the middle of a major metropolis and I have no control whatsoever.  But I feel secure.  The blanket keeps me warm and Diane is become a better driver every day.  For a short second, a memory returns that was buried deep inside me — a memory of being a toddler, in a push-chair, carted around, just like this, by my parents.

Friday, October 03, 2008 Erik No comments

I was surprised by all the heavy-duty drugs I was given this week.  This is the kind of stuff you read about in newspapers — morphine and cocaine!  My previous history as a drug user is easily told.  I never tried any heavy recreational drugs and the few times — twice perhaps — that I smoked marijuana, I really hated it.  Since those bad experiences some 25 years ago, it’s been clear to me that drugs are scary and that my mind doesn’t need additional excitement.  My mind creates sufficient excitement on its own.

Now let me tell you about Mr. Morphine.  Mr. Morphine is a guy who suddenly appears after I’ve had 12.5 milliliters of that clear, opium-based, liquid my doctor gave me.  Mr. Morphine is a super hero like what you would find in an old Marvel Comic.  He has a purple dress and a red cape, and he can fly through the air with his fist clenched.  Mr Morphine can do anything and deal with any problem.  He looks out for me, fights my fights for me.  Above all, he stands up to the high-speed accelerator — the radiation machine — and deflects all its rays with his bare hands.

While all this is going on, I’m asleep in Mr Morphine’s van.  Yeah, he has a little van, just like an electrician or a plumber, and in the back of it, behind the driver’s seat, is a comfy mattress.  That’s where I am bedded down. Here I sleep, I dream, I fantasize; the pace is leisurely and the pain is gone.  I’m very happy to be in the back of his van and I’m very happy that Mr. Morphine is dealing with the situation for me.

I’ve understood something important about drug addiction.  Quite apart from the physiological dependency, many addicts surely regard their drugs as good friends, and like all friends they are difficult to say goodbye to.  Surely, for many addicts, the drug is the only one who indisputably is on their side.  To stop taking the drug is for that reason to become alone and defenseless.

No, I don’t think I’m in danger of developing an addiction.  I don’t mind being alone and defenseless, especially the day — very soon now — when there is far less to defend myself against.

By contrast, the cocaine is quite a different story.  It comes in a little spray bottle and it’s strictly local anesthesia for my mouth.  It calms down inflamed gums in a second and it makes it possible for me to eat.  (Un)fortunately there are no other, more exotic, side effects.

Sunday, October 05, 2008 Erik No comments

This is the summary of the last week of treatment.  Believe it or not, right now even four days more seem like a long time.  I’m planning to take a lot of morphine and just let the days happen.

Oct 6, Monday:  I worry that Dr Ding is going to give me a feeding tube this afternoon.  No, I don’t eat all that much, but I eat more than nothing.  I have to take my shoes off when she weighs me, but she never checks my pockets.  Maybe I’ll bring something heavy — coins? — to boost my weight.

Oct 6, Monday, evening: I escaped the feeding tube by one kilo.  I’ve lost 9 since the beginning of the treatment, not 10.  I’m very happy about that.  Dr Ding gave me pills against the fibrosis in my neck.  Should make it easier to move my head.  Today’s radiation was hard.  It rained and we got lost in the subway with the wheel-chair on the way back.

Oct 7, Tuesday: Still can’t talk, but at least I ate some in the morning.  Diane wheeled me off to Taipei.  The radiation hits really hard now.  Afterward the interior of my mouth is swollen to the point where I can’t even drink water.  It took until 10.30 in the evening before I could get some egg drop soup down.

Oct 8, Wednesday: I feel like I’ve been too close to a nuclear explosion.

Oct 9, Thursday, morning:  This is the last day of the treatment, but I’m not in a celebratory mood.  This morning I can’t move.  I can’t talk.  I can only force down one small cup of soup and half a glass of water.  I know why it’s 33 radiation sessions and not 34 or 35 — because no one can stand any more.  This is the limit of my endurance.

Oct 9, Thursday, evening:  I’m back home again.  It’s over.  I’m done.  No one is going to shoot a radiation gun at me again.  I went to hell, but then I came back.  I’ll write more tomorrow.

Thursday, October 09, 2008 Erik No comments

scroogeThis is the first day of the rest of my life.  Of course I’m relieved.  I survived.  I didn’t have to go into the hospital.  I didn’t need a feeding tube.  I lost 10 kilos but only two large tufts of hair.  I wish I could be happier, but I still feel really, really lousy.  Recovering is going to take some time (three weeks the doctors predicted).

I took a bath this morning.  The first proper bath in six and a half weeks.  During the treatment I wasn’t allowed to wash myself properly since I couldn’t remove the black line on my chest — the line they use for calibrating the angles of the radiation machine.  Washing off that line in good old soap felt great.  My body is now my own property again.  It doesn’t belong to the doctors and their infernal machines.  I washed my hair too for the first time in three weeks, and if I only could have brushed my teeth with toothpaste, I would have been in heaven.  But that will have to wait (toothpaste burns my gums).

I wonder what happened to my cancer?  Is it gone now or is it lurking somewhere, waiting to return?  I guess there will be all kinds of tests … Meanwhile, I’ll think of myself as a “cancer survivor.”

Pretty amazing really: I was diagnosed on 18 July, and only three months later — October 18 — I will not only have had a major operation but also gone through treatment,and be well on the way to recovery.

But it’s not back to normal, and it won’t be.  I’m going to make some fundamental changes.  To live differently and to live better, more calmly and with more attention to others.  I feel like Scrooge, waking up on Christmas Day, realizing that Christmas isn’t over, and that he still has a chance to set things right.  I too will buy the biggest goose in the shop-window and invite everyone I know to share it.

Sunday, October 12, 2008 Erik No comments

Maybe I sbouldn’t count on more than three years?  Most cancers seem to come back after three years.  Maybe that’s what it take for a tumor to grow big enough for the doctors to see it.  If so, I’ll have a recurrence in 2011, when I’m fifty.

I’d better prepare for that.  When the cancer comes back I have to be ready for it.  And I have to use these three years well.

Friday, October 17, 2008 Erik No comments

One can never know what to expect with this treatment. When we thought about it back at the beginning of September I guess we imagined immediate recovery or something very close when it was done. The reality is that it is very painful, hard, tedious and long for Erik. He cannot eat enough to be comfortable and none of his painkillers are very effective. We did manage to find one type of liquid diet that does not make him sick to his stomach. I had a panic attack when I went to the local Hospital shop where I bought the first can and they could not find anymore. The poor shop girl! She managed to find some in a box underneath some other stuff . She was glad to see the back of me.

Diane

Friday, October 24, 2008 Erik No comments

This was not what I expected.  I thought I was going to get well really soon.  I assumed that the last day of radiation would be the end of it all and that everything would get better from then on.  It hasn’t worked that way.

During the first two weeks since the treatment stopped I was getting worse, not better.  I stayed in bed throughout, between sheets, trying to eat and drink, but not being very successful at it. Popping pills in a thousand colors, trying to sleep, coughing blood and phlegm, night and day completely blended together.  I couldn’t speak — I lost my voice some three weeks ago — and I communicated with Diane via written notes.  Half of the time she couldn’t understand my squiggles.  The children were too scared to come anywhere near me.

Weirdest of all: I somehow lost my claim on a place and position in life.  I just didn’t care what happened to me.  I had no interest in anything.  Not in my own future and not in whatever happened to my family or anyone else. During the radiation treatment, I was engaged in a battle which was ferocious but also, in a way, exciting.  After the treatment stopped, there was no fight, just an infinite emptiness.  I lost my will to live, I guess, and with it I lost my will to write.

It was a big mistake not to accept the feeding tube through my nose.  For about two weeks I really didn’t get enough nutrition.

Since I’m writing here now, you know I’m coming back to life.  Today is the first day that I feel a bit better.  The first inkling was an unexpected desire to eat pineapple.  Suddenly I wanted to eat a piece of pineapple so badly it made me cry.  But I can’t eat solids yet and I shouldn’t get ahead of myself.  I’ll stay with the nutrition drinks for another week.  Still, the sudden desire for something was very surprising and very encouraging.  A person who really, really wants to eat pineapple has not given up on life yet.  I am slowly returning to myself.  Reclaiming my place in the world.

Wednesday, October 29, 2008 Erik No comments

I know what girls like.  Well, I know what 10 and 12 year old girls like.  They like the new ASUS EEE 900 computer.  It’s cute, it’s friendly, it’s easy to use and to carry around.  Beata in particular has been pestering me about getting one for months.  I promised I would buy one for every daughter who managed to save up 3000 NT ($100).  Saga and Beata did and now we have two more computers in the family.

And make no mistakes about it.  The EEE Pc may look cute, but it’s a very powerful machine.  Even seasoned middle-aged reviewers are drooling over it.  What they all complain about though is the keyboard — it’s too small.  And it is.  If you are a seasoned middle-aged reviewer your fingers are most likely too fat.  But this is the beauty of it!  For a 10 to 12 year old girl the keyboard is just right.  It’s like the computer was made for her, and she knows it.  Saga and Beata are now exploring the internet on computers their parents cannot control.

The next empowering technology project is to get them all a red sports car when they turn 18.  Red sports cars, like cute computers, are wasted on middle-aged men.  I want my girls to pick up guys, to leave them in the dust, to drive off into the sunset, on their own wheels.  Why a red car?  Well, red cars are loud and self-confident.  I want my girls to be loud and self-confident too.

No, we can’t afford a red sports car for each of them.  They will have to pass it onto each other as they, one after the other, turn 18.  Unfortunately paying for an expensive car does mean that we can’t support them financially through college.  But hey, life is all about getting your priorities straight.

Wednesday, October 29, 2008 Erik No comments

Two days ago I returned the wheel-chair to the hospital. It was a big decision. I liked that wheel-chair. But it was quite a sensation to simply stand up and walk. Yesterday I went up to my study. Spent much of the day organizing papers, mainly throwing things away. I ate some minuscule pieces of chicken for dinner, washing them down with plenty of soup. It’s not much, but I have now left my sick-bed behind and I’m doing things again. Normal things, that normal people do.

The great loneliness is also behind me. The loneliness that envelops all those who are stuck inside their illness with no interest in communicating with the rest of the world. Slowly I’m coming back to myself.

The question is only which self I’m coming back to. To my great surprise I find that I live in Taiwan, and I have a wife and four children. How did that happen? How did I come to be here and not somewhere else? When I think of myself I might as well be “Erik, the teacher in London,” or “Erik, the student in America,” or “Erik, back on the farm in northern Sweden.” And where are all my family members — my father and mother, my sisters and friends?

I don’t know if I even remember how to be a father, a husband and a teacher? What if I can’t remember?

Thinking about living again, it seems unbelievable that there really is a place for me in the world. That I too, once more, could become a normal person. That the supermarket will let me in; that there is a subway ticket for me to buy, and a place at the table in the cafeteria. I never dared to hope for that much and I’m still hesitant to ask for such privileges.

Saturday, November 01, 2008 Erik No comments

 

We went to a wedding today (well, I didn’t, I was at home eating soup, but I sent my girls).  My wonderful Chinese teacher, Chen laoshi’s, son was getting married.  It was a great opportunity to dress up and have a real Chinese banquet lunch.  (Bride and groom to the left, Chen laoshi next to Diane, and her husband, professor Huang, to the right).  A good time was had by all.

Thursday, November 06, 2008 Erik No comments

 

Obama’s kids, Sasha and Malia, are getting a new puppy when they move into the White House.  My 10 and 7-year olds have decided that it’s not fair.  Moving to the White House is nothing, they argue.  We moved much further — all the way to Taiwan and we didn’t get a puppy or anything.

I’m thinking of Obama’s mother, Ann Dunham.  Few people talk about her.  Clearly they find her enigmatic.  Embarrassing perhaps.  As a 17-year old girl she moved from Kansas to go to university in Hawaii and soon she fell for this guy from Kenya.  After he left, she went on to marry a person from Indonesia and worked with NGOs in rural development projects around Asia.

Northern Sweden isn’t that different from Kansas.  Both are places where nothing happens and everything is the same.  I completely understand her desire to discover the different, the exotic.  Part of the attraction is sexual.  You want to possess otherness and you want to be possessed by it.  But the sexual aspect is secondary to a much deeper desire to both forget yourself and to find yourself in an embrace of the completely unknown.  I too have lived my life like that.

Sometimes I think my kids will suffer from my eccentric life-style choices.  But then I think about Barack Obama.  He seems to have done OK.  In fact, there is research which says that multi-cultural cross-fertilization — especially of languages — helps your brain develop better.  Maybe one of my kids too one day will become president of the United States.  Then they can finally have that puppy.

Thursday, November 06, 2008 Erik No comments

Not that much has happened in the last two weeks. And that’s just the problem. Being able to talk again, getting out of bed, and returning to my family, were great steps forward, but since then there is no progress. I can still only drink soup.  I’ve had soup three times a day for two months now.  Feeling adventurous I tried a small piece of chocolate yesterday and I nearly choked.  I can’t drink juice or milk since it burns my throat.

The doctors said it would take three weeks before I felt OK, but it’s been four weeks now and I don’t think I’ll be alright in another week or two.

The problem is this: before long they are going to make me take new tests: MRIs, blood samples and lung scans.  I need to feel strong, and normal, before that day comes, before they start worrying me again.

Tuesday, November 11, 2008 Erik No comments

I’m really happy this morning.  I went to the big hospital in Taipei yesterday and talked to professor Ko and Doctor Ding.  They were both very positive.  “Your mouth is healing nicely,” said professor Ko.  “Every day you will get better and better.”  “Your neck isn’t so stiff anymore,” said Ding, “you have almost completely recuperated.”

So, the three weeks it would take to recover was just an average which doesn’t apply in my case.  The fact that I still can’t eat solid food is nothing to worry about.  I just have to take it easy.  Be patient.  Everything will be OK.

And the best thing of all:  I don’t have another doctor’s appointment for two whole months.  Not until January.  That’s when they’ll do the lung scan, the blood samples and the MRI.  But by then I’ll be firmly settled into my new routine.  I’ll be eating broccoli by the bucket-fulls, I’ll be swimming 10 lapses a day, and meditating like a Bodhisattva.

It’s great to take a break from my cancer for a while.

 

Friday, November 14, 2008 Erik No comments

In the last couple of days it’s struck me that maybe I should write a book about my experiences of having cancer.  I have quite a unique perspective on the Taiwanese health care system.  There are not many foreign patients at NTU hospital, actually I never met a single one.  Perhaps it would be interesting for Taiwanese people to read about my experiences?  If I write it in English, maybe my friend Tsung-yi could translate …

One idea is to write a social science thingy regarding health care in different societies and compare Taiwan with other cases.  There is a lot of interesting material here.  Not least since Paul Krugman, this year’s Nobel Prize winner in economics, always is telling people how the US needs a health care system “just like Taiwan’s.”  Check this out, and this, and this.

Another idea is to use stuff I’ve already written on this blog and write a far more personal book.  Maybe I could even start to fictionalize my experiences a bit (although I’m not much of a fiction writer).  Or maybe I could combine the social science idea with the personal idea and write about both at the same time?  Can this be done?

The main purpose of writing something would be to thank my doctors — professor Ko, doctor Hong and doctor Ding — for helping me out in such a great way.  A book would be a suitable tribute.  What about a title like “My Cancer Diary: How the Taiwanese Health System, and My Blog, Saved My Life”?

Friday, November 14, 2008 Erik No comments

I’m returning to work and it’s really great.  I’ve started reading and writing again.  There is a lot of stuff I should have done in the last couple of months and  now I’m dealing with the backlog: two edited volumes I’m supposed to edit, an article on boredom and war (yes!) and of course my old project on the Yuanmingyuan.

But there is no stress.  It’s all fun stuff.  It’s great to deal with things that don’t concern me and my body.  The life of the mind is far more interesting than the life of the body.  It’s a great escape.

Actually I find that I write much more easily than before.  I suppose in this respect 4 months of cancer is the equivalent of a vacation.  My mind is nicely rested.

The picture to the right is a poster that goes with a conference on “the unthinkable” in Taipei in December.  It’s my anthropology friend, Allen Chun, that’s encouraging us all to be creative and bold.  I’m trying to do my bit by writing something about “the idea of the exotic.”  Lets hope I’ll be able to eat proper food by mid-December.  It’s so awkward to hang out with other peoople otherwise.

Btw, I just noticed that my hypersensitivity to smells is gone.  Great.  It was terrible to walk around smelling everything so strongly.  The stench of tea eggs (eggs cooked in tea, don’t ask, it’s a Chinese thing) in the High Speed Train station was the worst.  I now know what it’s like to be a dog.  Well, I’m not a dog anymore.

Monday, November 17, 2008 Erik No comments

Now I have finally managed to get hold of some photos of my three doctors.  These are the three people in whose hands I have entrusted my life.  And so far, they have done a really amazing job of it.  May it long continue.

This man to the right is professor Ko.  He is the surgeon who took out all the lymph nodes in June.  This must be a photo from his graduation, or maybe when he got a PhD.  Anyway that was really quite some years ago.  Now he is a man in his early 50s, I think, but it’s difficult to say for sure since he always wears a face mask when I meet him.  What’s most exceptional about professor Ko are his hands.  The fingers are very long and very muscular.  They are real surgeon’s fingers, or the fingers of a concert pianist.  He immediately makes you feel that you are “in good hands.”

The person to the left here is professor Hong.  He is my oncologist.  The best oncologist in Southeast Asia someone said.  He has an amazing way with his patients — all those poor old smokers with throat cancer.  He gives them all a lot of attention and a friendly smile.  On Tuesdays he sees some 150 patients in a day.  No case is easy; all of his cases are serious.  I find it really amazing that there are people who are prepared to care for those of us who are in most desperate need.

The last photo — to the right here — is doctor Ding.  This photo too must have been taken some time ago.  Dr. Ding is a little older now and a bit more like a cake-baking aunt.  She is my radiology doctor and she always tells me to eat more.  She too is friendly and cheerful.

Btw, I threw out the rest of my cocaine and morphine today.  I’m not using it anymore and I don’t want to have it around in case the kids find it.  I just poured the illegal substances down the drain. That’s how much of a junkie I am.  I could have passed it on to some party-going student, I suppose.  Oh well.

Monday, November 17, 2008 Erik No comments

soupEvery meal Diane makes soup for me.  I could do it myself, I guess, but she has a special recipe that she won’t tell me.  I guess it’s because it contains a lot of super-fatty things (real cream, real butter) that she knows I wouldn’t put in the soup if I was cooking it myself.

I’m eating the soup alone.  It’s still difficult to get it all down and I get stressed out if people are looking at me eating; things don’t go down or end up in the wrong place.  (Some kids are like that too — they can’t stand people watching them when they eat).

Coming up to my room with the soup Diane has started singing a poem — “The Mock Turtles Song” — by Lewis Carroll (the mathematician-author of Alice in Wonderlandetc.)

Beautiful soup, so rich and green!
Waiting in a hot tureen!
Who for such dainties would not stoop?
Soup of the evening, beautiful soup!
Soup of the evening, beautiful soup!
Beau-ootiful Soo-oop!

Beau-ootiful Soo-oop!
Soo-oop of the e-e-evening,
Beautiful, beautiful Soup!

Beautiful soup! Who cares for fish,
Game, or any other dish?
Who would not give all else for two
Pennyworth only of beautiful soup?
Beau-ootiful Soo-oop!
Beau-ootiful Soo-oop!
Soo-oop of the e-e-evening,
Beautiful, beauti-FUL SOUP!”

Yeah, yeah, I think.  Just make fun of the poor patient!  But the soup is very good (and usually most of it actually goes down).

Wednesday, November 26, 2008 Erik No comments

turkeyI don’t know what’s happening.  I’m still not getting any better.  In fact there haven’t been any real improvements for the whole past month.  I can still only eat soup and at night I wake up every two hours since my mouth is completely dried out.

Actually the last few days have been terrible.  Maybe I caught a flu that brought Beata down for a few days.  I’ve been stiff and achy.  And above all, I’ve been very depressed.  Feeling very sorry for myself. I talked to my uncle in Sweden who is an ear/nose/throat specialist.  He claims I’ll be better by Christmas.  I don’t know. It’s now only a month until Christmas, but I can’t see any improvements.

My plan was to have a Thanksgiving party.  With turkey and the trimmings, but above all with friends and colleagues — all the people who have helped me out in such an amazing way during the last couple of months.  But, under the circumstances, the party was canceled.  No thanks were given.

Monday, December 08, 2008 Erik No comments

thumbs upI haven’t written here for a while.  It’s nice not to write on this blog.  It means that nothing bad is happening.  No news is good news.

But now I want to tell you that I’m finally starting to feel better.  I had gröt, porridge, for the first time yesterday and it went OK  The step up from soup to porridge might not seem like very much to you, but for me it’s huge!.  I had porridge today too and it almost tasted like something.  Last night I sat at the table with my kids for dinner.  For these past months I’ve been upstairs in my room trying to force down some soup and the kids have eaten in front of the TV.  It was wonderful for the family to be back together at dinner time again.

Today it’s two months since the radiation ended.  It will take another month before I feel normal, but I’m definitely on the road to recovery.

 

Tuesday, December 09, 2008 Erik No comments

This post is scheduled for publication today but I didn’t write it today.  I wrote it on August 2, 2008, in the middle of the summer, two weeks after my diagnosis for cancer.

This is my birthday.  I was born on December 10, 1960.  Today is the day when I would have turned 48 years old. Will I live to see this day?  Will I live to read this post?  Will I be able to laugh at it and my fears?  Let’s hope so.

The answer of course is yes.  Never in my life has is been as nice to have a birthday.  I’m planning to have lots and lots of birthdays from now on.

Wednesday, December 10, 2008 Erik No comments

I turn 48 today. Birthdays used to make me sad — “another year gone by,” “only x number of years to retirement,” etc … But this birthday is special. For a while there I wasn’t sure if I’d ever get to have it. But I am. And let me tell you, having a birthday is so much better than not having one 😉

Lets hope there’ll be many, many more birthdays for all of us!

Thanks for all the birthday greetings, you wonderful people!

Wednesday, December 24, 2008 Erik No comments

Season’s greetings to you all.  May yours be jolly and white and all that.

As in previous years we are trying to fit a European holiday into a Taiwanese schedule.  It’s not easy.  Today and tomorrow are regular school days for us, with school bus in the morning and homework at night.  We have added some Christmas traditions to that schedule, but the result is necessarily that we get too stressed out.  How can you buy presents, cards, food, clean the house, cook and bake, when you leave your home at 7 in the morning and come back at 7 at night?

This year I’m very nostalgic for the Christmases of my childhood.  The deep snow, the forest where we cut our tree, the blazing fire in the fireplace.  All the presents and the food; the relatives, the cookies and the candy; watching TV with the whole family.  My father always dressed up as Santa Claus, even when we were grown up and before we had children of our own.   No, we didn’t go to church with a horse and cart, but we drove there before six in the morning through the snow drift.  And my sisters always sang in the choir.

There is none of that here in Taiwan.  All those memories that symbolize an entire world of comfort and joy.  Yes, I miss that comfort and joy, this year more than most previous years.  And I  feel terrible that I can’t pass any of it on to my children.

If comfort and joy is yours this holiday, enjoy it!  We’re too busy doing homework.

Wednesday, December 24, 2008 Erik No comments

Merry Christmas to all of you.  We are celebrating our holiday in Taiwanese style, meaning that we work and go to school as normal both on December 24th and 25th, while, half-heartedly, handing out a few presents and saying a few cheers.  No, the Christmases of my childhood it ain’t.

I’m still on my soup and porridge diet.  Yes, I’m disappointed about that.  I thought by now, surely, I could start eating normal things.  I’ll have turkey soup rather than turkey this year.  I’m trying not to worry about it.  Trying to tell myself there is notiing wrong and recovery takes time.  That’s right, right?

Well, merry holidays if you celebrate them.  We’re keeping our spirits up.

Friday, January 02, 2009 Erik No comments

In China red is the color of happiness and good luck, and naturally it is associated with the New Year.  A popular New Year’s present is to give away red fruit and berries — red apples, grapes, strawberries.  Lucky me, I got a number of boxes of bright red fruit this year.  Funnily enough recent research has shown that fruit and berries with bright red colors often contain more antioxidants and thus first-class anti-cancer protection.  If a billion people have been doing something for thousands of years, you can bet there is a good reason for it!

To add to our quota, we went strawberry picking today.  That’s right.  In the pleasantly green mountains in the Taian valley, an hour south of Hsinchu, the strawberry season has just started.  We sent the kids out into the muddy fields and they returned with big smiles and a big box all filled up.  They have great hiking in Taian too, hot springs, and hotels where guests wear bath robes for dinner.  We’re definitely going back for more.

Saturday, January 10, 2009 Erik No comments

It is now three months since my treatment finished.  Progress has been very slow, measured in weeks rather than days.  I’m still too dry to sleep properly.  I wake up at 1 or 3 or 4.30 — and usually I go to the computer and start writing. I’ve written a lot in the last three months.  I like writing.  While the body emprisons, the spirit sets you free.

I can eat more than I used to.  Now I regularly have porridge for lunch and I’m experimenting with solids for dinner — I had spaghetti and tomato sauce yesterday.  The sauce was nice, the pasta was dry and sort of lifeless.  I got tired of chewing it all after a while, but much of it went down and I shouldn’t complain.

My boss, professor Lee, and Mei-hung, my lovely colleague, stopped by to cheer me up.  They are waiting for me to come back to work at the end of February.  Thankfully our vacation has not even started yet — we have Chinese New Year’s on January 26th.  Then there is a month of vacation and then school begins again.  I’m going to be there!

I’m off for more tests on Tuesday coming.  More reports will follow.

Monday, January 12, 2009 Erik No comments

I went up to TaiDa hospital today.  I went alone, and it was great.  I can do things alone again, like in the good old days before my diagnosis.  Met professor Ko, who operated on me.  He seemed happy enough with my progress, although the neck is stiff and my mouth is dry.  I should gargle with salt-water, he said.  I like low-tech solutions like that.

Afterwards I did a blood test, a lung X-ray and an MRI.  The MRI tunnel is starting to feel like a place I know really well.  The symphony of pneumatic drills is strangely soothing.

I’ve dreaded going back to the doctor.  I’ve been telling myself that I’m a normal person, with some minor health issues.  For two months we haven’t mentioned the word “cancer” in our house — referring to it instead, euphemistically, as “my condition.”  Today, however, there is no escaping it.  “Cancer, cancer, cancer” — I might as well shout it loud; I mustn’t lie to myself.

I had an operation and I did the radiation treatment.  The presumption is that the treatment worked and that I’m much better.  Lets hope that’s the case.

Monday, January 19, 2009 Erik No comments

I’m going back to TaiDa hospital today to get results of the tests I took last week.  I don’t understand why, but I’m really worried about it.  I have this premonition of disaster.  Perhaps it’s the lung X-ray I did — I really don’t want there to be anything wrong with my lungs.  Perhaps it’s the fact that I’m still not feeling normal.

But then again, premonitions don’t mean anything.  It’s just superstition.  The presumption is that I’m OK.  That the cancer is gone and I can go back to being a regular person.  Imagine if that happened!  What an incredible thing!  But I don’t dare to start hoping for that.  My premonitions of disaster protect me against having my hopes dashed.

But it is still the case that more information is my friend.  If there is a problem, I need to find out.  And they can deal with that too.  More radiation, more treatment.  But lets hope it doesn’t come to that.  Lets hope the cancer is behind me.

No, I’m not a tough guy.  I’m just a baby.  But at least I’m honest about it.

I’ll find out more later today.

Wednesday, January 21, 2009 Erik No comments

Today is a great day.  I just came back from the hospital and I’m fine.  I got results back from a slew of tests, and I’m now officially cancer free.

.”Yeah,” said Diane, “and there is no Bush in the White House.”

“And,” said the kids, excited about their Chinese New Year’s vacation that started today, “we are off from school for three weeks.”

No cancer, no Bush, no school.  Things have been bad, but everything’s getting so much better.  A very great day indeed.

Monday, September 07, 2009 Erik No comments

Getting ready for my visit to TaiDa hospital, I think about the presumptiousness of the living and our scorn of those who are dead. I feel an unspecified sense of responsibility for the departed on days like this (a responsibility which I quickly, and happily, forget about as soon as I get the doctor’s “all clear”).

Friday, March 15, 2013 Erik No comments

I’m going in for another set of tests this morning. Nothing special, just the regular 6-months checkup, that regular reminder of my mortality. Is this the time when they finally will discover that the cancer has returned? Of course not. Think positive! (as though how I think has anything to do with it).

Living so close to the edge all the time gives me an insight that normal people don’t have. I would like to use that insight better in the years to come. I would like to make something out of the proximity of the abyss. Then again, isn’t “the proximity of the abyss” just another game I play with myself? An intellectual abstraction? A way to derive a cheap thrill from the predicament I’m in? The actual experience of having cancer, if I recall correctly, was not like this.

I’m taking Saga with me this morning since she is far better at understanding what Chinese doctors are saying. But none of this is anything to get worked up about. It’s just the regular every 6 months routine.

I wish we all could live for ever.

Saturday, March 23, 2013 Erik No comments

I went to the hospital today for the doctor to interpret my test results. Everything is OK. The higher values on the blood tests have nothing to do with cancer. It’s just a virus of some kind. No medicine needed. The doctor told me to drink more water! The best thing of all: he suggested I only come in once a year from now on. It’s been five years and one test a year is enough. I really did survive in the end. I really did make it. Now I can finally think it and say it without jinxing my future.

For the first time in five years I can breathe normally again and look forward to many more years, to growing older and then old like a regular person. The story of my cancer is something that happened to me once, but which now is behind me. I will start to forget what happened but thanks to this diary I will also always remember.

Saturday, December 31, 2016 Erik No comments