July 19th, 2008 erik

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 thousands of cancer diaries on the web, just as there are millions of 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!!!

If you’re more interested in my regular blog, Too Many Mangoes, you can find it here.

I’ll write as often as I can.

yours always,

Erik Ringmar

Share on Facebook

Posted in Uncategorized | 40 Comments »

week 3 round-up

September 8th, 2008 erik

The 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.

Share on Facebook

Posted in Uncategorized | No Comments »

man against the machine

September 7th, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 2 Comments »

wedding bells

September 6th, 2008 erik

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?

Share on Facebook

Posted in Uncategorized | 2 Comments »

craving & aversions

September 3rd, 2008 erik

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)

This 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.

Share on Facebook

Posted in Uncategorized | 5 Comments »

week 2 roundup

September 2nd, 2008 erik

Another 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.

Share on Facebook

Posted in Uncategorized | 4 Comments »

what are my chances?

August 31st, 2008 erik

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!”

Share on Facebook

Posted in Uncategorized | 3 Comments »

Tim Minchin, doctor of the soul

August 31st, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 2 Comments »

week 1 round-up

August 27th, 2008 erik

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).

Share on Facebook

Posted in Uncategorized | 6 Comments »

my first day of chemo

August 26th, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 4 Comments »

my first day of radiation

August 25th, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 3 Comments »

like a six weeks’ dental appointment

August 25th, 2008 erik

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 Tuesday.  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.

Share on Facebook

Posted in Uncategorized | 6 Comments »

more hotel decadence

August 22nd, 2008 erik

We 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).

Share on Facebook

Posted in Uncategorized | 4 Comments »

counting down

August 22nd, 2008 erik

The 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.

Share on Facebook

Posted in Uncategorized | 2 Comments »

things my cancer taught me: my students

August 21st, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 11 Comments »

“döden, döden, döden”

August 20th, 2008 erik

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!”

But 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.

Share on Facebook

Posted in Uncategorized | No Comments »

affairs in remission

August 20th, 2008 erik

John Edwards, presidential candidate for the Democrats in the US, has admitted to having an extra-marital affair in 2006.  His wife, Elizabeth, was diagnosed with cancer in 2004 but, as the philandering husband pointed out, “my wife was in remission at the time.”  He never understood her vulnerability. Obviously Elizabeth Edwards must have other, and better, reasons to go on living than her relations with her husband.

It is surprising how politicians believe they can get away with this kind of stuff.  The only politician who would have benefited from an extra-marital affair would have been Hilary Clinton.  Surely a few unseamly stains on her pantsuit would have won her the presidential nomination.

Share on Facebook

Posted in Uncategorized | No Comments »

Leroy Sievers, cancer blogger, dies

August 20th, 2008 erik

TheNew York Times reports that Leroy Sievers, a journalist for CBS who was diagnosed with colon cancer in 2002, has died at the age of 53.   I didn’t read him before, but I’m reading him now.

After that day, your life is never the same. “That day” is the day the doctor tells you, “You have cancer.” Every one of us knows someone who’s had to face that news. It’s scary, it’s sad. But it’s still life, and it’s a life worth living. “My Cancer” is a daily account of my life and my fight with cancer.

For a while Sievers believed he had beaten the illness, but it came back to attack his lungs and brain.  Lets hope I have a better prognosis.  I’m eating my broccoli.  Not all cancer bloggers die of cancer.

Share on Facebook

Posted in Uncategorized | 4 Comments »

my right ear

August 19th, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 4 Comments »

a Filipina amah?

August 18th, 2008 erik

Outside 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 the money.  It’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.

Share on Facebook

Posted in Uncategorized | 6 Comments »

lazy weekend in Tainan

August 16th, 2008 erik

We’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.

Share on Facebook

Posted in Uncategorized | 2 Comments »

tropic of cancer

August 15th, 2008 erik

Going 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.

Share on Facebook

Posted in Uncategorized | No Comments »

to Tainan

August 14th, 2008 erik

We 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.

Share on Facebook

Posted in Uncategorized | 9 Comments »

radiation simulation

August 13th, 2008 erik

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.

After 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.

Share on Facebook

Posted in Uncategorized | 2 Comments »

take a look at this receipt!

August 12th, 2008 erik

Take a look at this receipt (click to enlarge!).  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?

Share on Facebook

Posted in Uncategorized | 6 Comments »

next semester

August 11th, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 7 Comments »

dolce far niente

August 10th, 2008 erik

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 …

Share on Facebook

Posted in Uncategorized | 6 Comments »

broccoli

August 9th, 2008 erik

I’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.

Share on Facebook

Posted in Uncategorized | 7 Comments »

“cancer is a great gift”

August 9th, 2008 erik

“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.

Share on Facebook

Posted in Uncategorized | No Comments »

what they’re actually planning to do to me …

August 8th, 2008 erik

Only 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.

Share on Facebook

Posted in Uncategorized | 10 Comments »

the doctor’s report

August 8th, 2008 erik

This is professor Ko’s report from my operation, together with the biopsy of the lymph nodes they took out.  I don’t understand much of this, but perhaps you do.  Click on the thumbnails below to enlarge.

What I’m particularly curious to know is what kind of treatment that’s recommended by various doctors for a case such as mine. My doctors are planning to give me a pretty stiff dose of chemotherapy and radiation but maybe there are other options …

I have some other documents — PET scans, bone density reports, MRI reports — but they are less relevant (mainly since they’re all good news — yes!)

Share on Facebook

Posted in Uncategorized | No Comments »

free parking?

August 7th, 2008 erik

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.

Share on Facebook

Posted in Uncategorized | 3 Comments »

the whoosh of a radically expanded time horizon

August 7th, 2008 erik

With 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.

Share on Facebook

Posted in Uncategorized | No Comments »

where is the original cancer?

August 7th, 2008 erik

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!”

Share on Facebook

Posted in Uncategorized | No Comments »

very good news!!!

August 5th, 2008 erik

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.  NadaNiente.

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.

Share on Facebook

Posted in Uncategorized | 21 Comments »