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

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test results

May 12th, 2009 erik

I haven’t written here for several months.  There hasn’t been much to report.  I like it that way.  My recovery is continuing, but it’s exceedingly slow.  Even now, six months after my treatment ended, I’m basically only eating soup and porridge, and I wake up in the middle of the night since my throat gets too dry.  My neck is still stiff, but it feels more normal, like a part of me and not someone else.

I’ve been very busy the last couple of months.  Frantic even.  I’ve written things continuously — chapters for my forthcoming book, conference papers, and academic articles.  It’s not what I planned to do when coming back to life.  I was going to go around and hug people and smell flowers and enjoy the sun.  Instead I’m constantly at the computer.  Maybe it’s a process of self-assertion.  I have to write, write, write to make myself into the same old person again.  I also feel stressed, like I don’t have as much time as other people.  I’m more impatient.

Most of my plans to change my life around have not materialized.  I don’t meditate, for example, like I promised myself.  Apart from the frantic writing, most things are pretty much the way they were before the calamity struck.  I’m disappointed by that.  Every day routines are stronger than most resolutions.

Btw, I’m going back to Taipei for test results today.  I took a lung X-ray last week and a test for “disseminated malignant neoplasm” in the blood.  Sounds terrible, but I guess the whole point is to look for the stuff.  Yes, I’m a bit nervous about the results, but only a bit.  Reports will follow.

6 o’clock update: Just back from the big hospital.  Dr. Hong was very happy with me.  Blood test is fine and lungs are fine.  Hong revealed something interesting: “I was a bit worried in January,” he said, “there were so many nodes with cancer in them. I was afraid there would be a recurrance.”  But now “every time the risk of a recurrance goes down.”  He seemed genuinely relieved.  He clearly doesn’t want me to die on his shift.  Well, I ain’t gonna.  More tests, but not until September!  I don’t have to worry about this stupid thing for another four months.

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officially cancer-free!!!

January 21st, 2009 erik

I got the results back from the tests and I’m now officially cancer-free.  No lesions on the MRI; nothing in my lungs.  “No problems,” said Dr. Hong; “It loks pretty good,” said Dr. Ding.  It’s over, it’s behind me.  I had cancer, but now I don’t.  I’m a cancer survivor, with the horrible condition in my past and not in my present.  You have no idea how great it is to write these words.

Yes, it could come back.  But I’ll be doing check-ups every three months from now on.  “We treated such an extensive area,” said Dr. Hong, “and we want to make sure you’re OK.”  Not only am I cancer-free, but I’m better monitored than next-to every other normal person.

Yes, there are still side-effects of the treatment — I can’t really eat and I can’t really sleep — but who cares about side-effects?  I love side-effects!  They are so much better than the primary effects.

Coming back home to tell my kids was one of the best moments in my life.  “Pappa has no cancer!”  “Great, great, great.”  Hugs and kisses all around.  The girls have worried so much.

I have a long Oscar-style list of people I want to thank, but let me be brief.  Without Diane, my wife, I wouldn’t have made it; and not without Mei-hong and my other colleagues at work, and not without you, dear blog reader.  You cheered me up and gave me invaluable advice when things were at their bleakest.  I’m eternally grateful.

But of course I think about the people I met in the queues to my doctors, the fellow unfortunates in the radiation room, in the chemo-therapy center.  Some of them were old, but some were far too young.  Some of them, like me, will make it, but some of them won’t.  It’s not fair.  I feel guilty, like all survivors.

And one more thing: if you smoke, please stop.  Stop immediately.   And don’t engage in other stupid, cancer-producing, activities. I don’t want to read your cancer blog in a year’s time.  Writing a cancer blog is great, but not writing a cancer blog is infinitely better.

love to all,

Erik

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back for test results

January 20th, 2009 erik

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.

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testing, testing

January 13th, 2009 erik

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.

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three months on

January 11th, 2009 erik

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.

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Merry Christmas from the soup kitchen

December 25th, 2008 erik

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.

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did I make 48?

December 10th, 2008 erik

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.

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finally feeling better

December 9th, 2008 erik

I 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.

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no thanks given

November 27th, 2008 erik

I 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.

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my doctors

November 18th, 2008 erik

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.

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beau-ootiful soo-oop

November 18th, 2008 erik

Every 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 Wonderland etc.)

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).

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write a book about it?

November 15th, 2008 erik

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?

Anyway.  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”?

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back to work

November 15th, 2008 erik

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.

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great to take a break

November 12th, 2008 erik

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.

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still not normal

November 7th, 2008 erik

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.

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coming back to myself

October 30th, 2008 erik

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.

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a sudden desire to eat pineapple

October 25th, 2008 erik

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.

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Erik is having a hard time right now

October 18th, 2008 diane

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

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three more years?

October 13th, 2008 erik

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.

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the first day of the rest of my life

October 10th, 2008 erik

This 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.

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last week round-up

October 6th, 2008 erik

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.

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Mr. Morphine

October 4th, 2008 erik

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.

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I’ve got wheels!

October 4th, 2008 erik

Going 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.

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week 6 round-up

October 3rd, 2008 erik

This 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.

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a green apple and a swim

September 28th, 2008 erik

Struggling with my oatmeal and my chicken soup, there is nothing I want to eat more than a green apple.  A juicy, fresh-tasting, tart apple.  Something to bite into, something to chew.

Laying here in bed unable to take care of myself, there is nothing I want to do more than to go swimming.  To dive deep down to the bottom of the pool, to pretend I’m a seal, or at least an underwater photograher.

If you have a green apple today, or if you go swimming, please think of me.  And also, make sure you really appreciate every bite of the apple and every stroke of your swim.  These are simple pleasures, but simple pleasures are always the best.  You are very lucky!

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angry and downright mean

September 26th, 2008 erik

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.

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week 5 round-up

September 23rd, 2008 erik

I 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.

Sept 24, Wednesday: Chemo day with a well-stocked mp3-player.  I found a bootleg of a Dylan concert from Gothenburg in 1978.  I went to that very concert as a 17 year old!  “I see my life come shining/ from the west down to the east/ any day now, any day now/ I shall be released.”  Couldn’t talk after the radiation.  Limped home of wobbly legs. But calmed down in the evening and felt much better.

Sept 25, Thursday: They have started shooting at my upper torso.  Maybe they’re afraid the cancer has spread there; maybe they’re just being thorough.  A sign in the waiting room said “On October 10th there will be no treatment due to a national holiday.”  That message doesn’t concern me.  I’m done on the 8th!

Sept 26, Friday: Fridays are always hard and this was hardest Friday yet.  I came home on the train half-dazed, stiff and unable to speak.  After 25 radiation sessions I’m starting to come up against the limits of what I can endure.

I survived another week.  The routine is well established by now, I’ve learned how to kill time, and one day is magically added to the next.  Check out the card!  I’m working on the second side of it. There are only eight days of treatment to go; ten days in all, including the weekend.  But I’m starting to feel really terrible.

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my heart is in the highlands

September 22nd, 2008 erik

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.”

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Diane isn’t pregnant after all

September 21st, 2008 erik

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.

When 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.

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things my cancer taught me: don’t smoke!

September 21st, 2008 erik

Everyone 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!

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week 4 round-up

September 19th, 2008 erik

The 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.

Check out the card!  I’ve completed all of the first side of it.  Unfortunately, there is another side …

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what I’m taking

September 19th, 2008 erik

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).

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research in bed

September 14th, 2008 erik

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”}

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losing my hair

September 14th, 2008 erik

Ever 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.

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