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  • Sharehouse Jakarta 7:43 am on May 5, 2012 Permalink | Reply
    Tags: , , ethnography of cancer, , , , ,   

    Kalau kanker, tidak ada kata menunggu, sabar, dan takdir 

    Sel normal (A) saat rusak atau tua mati, tapi sel kanker yg error (B) mala membelah diri dan maju

    Apakah kamu tidak tahu bahwa Allah mengetahui segala sesuatu yang ada di langit dan bumi. Sesungguhnya itu semua telah ada dalam kitab, sesungguhnya itu sangat mudah bagi Allah (Al-Hajj / QS. 22:70)

    Sebagai seseorang WNA, saya sadar bahwa kesabaraan termasuk dalam sifat-sifat utama orang Indonesia (memang saya tinggal di Jakarta/Jawa tapi pernah juga ke pulau2  lain, orang tetap sabar).

    Nah, kali ini — dalam hal ini yg namanya kanker — apa kita tetap mesti sabar?  Apa ini hanya saat sabar — dan menyadari bawah Allah mengetahui segala sesuatau yang ada di langit dan bumi –atau saat bergerak, bantu, tanya, barang kali pindah rumah.

    (RS Dharmais juga menerima yg miskin/kurang mampu seperti mertua saya, namanya Pak Fadil (foto dibawa) lagi sakit kanker lidah stadium lanjut).

    Kenapa mesti cepat di obatin kanker? Karena kanker meruakan eror dalam sel-sel tubuh. Dari satu sel eror, mejadi banyak. Dari Wikipedia saya pinja: “Kecacatan sel, sebagai penyebab kanker, biasanya bisa memperkuat dirinya sendiri (self-amplifying), pada akhirnya akan berlipat ganda secara eksponensial.”

    Itu kuncinya. Eksponensial. Kalau orang memperkuat dirinya sendiri maka satu laki-laki dan satu perempuan menjadi 3 orang (atau empat kalau kembar). Tapi kalau sel kanker, 1 sel kanker menjadi 1,000,000,000 (satu miliar) sel kanker dalam berberapa minggu (tergantung tipe kankernya).

    Makanya, kalau pasien masih sehat atau masih mudah, harap kita menolak kata2 pihak rumah sakit yang berbau sabar dan takdir. Kalau penyakit lain, yg bukan kanker, tidak ada maslah. Mala masuk akal tunggu duluh. Tetapi kanker beda. Kanker tidak pakai kata tunggu,  sabar atau sopan.

    Ini saya juga pinjam dari Wikipedia: “Kebanyakan kanker menyebabkan kematian. Kanker adalah salah satu penyebab utama kematian di negara berkembang. Kebanyakan kanker dapat dirawat dan banyak disembuhkan, terutama bila perawatan dimulai sejak awal. Banyak bentuk kanker berhubungan dengan faktor lingkungan yang sebenarnya bisa dihindari. Merokok dapat menyebabkan banyak kanker daripada faktor lingkungan lainnya.”

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  • Sharehouse Jakarta 3:53 pm on April 7, 2012 Permalink | Reply
    Tags: ethnography of cancer, , , , silver jews, think global act yokel, urban anthropology   

    Amerik: Thank you for smoking 

    Alfred W. McCoy’s seminal work The Politics of Heroin in Southeast Asia says that “sanctimonious empire builders subjected millions of natives to the curse of opium addiction, generating enormous revenues for colonial development, and providing profit  for European stockholders (58).”

    So the recent WTO ruling may belong to the old story of business and government working together to market drugs. The WTO ruled — in essence — that since menthol in the USA is — by definition — “cool,” the U.S. can’t ban other ciggy flavors, like cloves. This came very much as a surprise to lawmakers of every stripe. Even Phillip Morris (which is heavily invested in Indonesia, via its Sampoerna brand) had worked out a way to get behind the failed no-flavored-cigarettes (except menthol) campaign.

    So what we’ve got is Indonesia selling cherry-flavored to American youngsters (who might not be into ol’ Joe Camel) and the U.S. — totally steamed — desperately searches for the trade loophole and discovers that the tobacco trade — and all the-double think that’s kept it smoldering so chilly all this time  — isn’t a loophole. It’s more like the way countries (and major guerrilla movements) have always done business. It’s how they finance the military, build hospitals, etc.

    As McCoy tells it:

    “[I]n the 1500s European merchants introduced opium smoking; in the 1700s the British East India Company became Asia’s first large-scale opium smuggler, forcibly supplying an unwilling China; and in the 1800s every European colony [including Batavia] had its official opium dens (59).

    This is a victory for the Indonesia-based manufacturers of  cloves cigarettes (we call them kretek), including Phillip Morris and the powerful tobacco families.  But it’s hardly a victory for Indonesia.  Indonesia — like the U.S. — simply has nothing to celebrate as regards its drug policy, particularly with regard to tobacco. Here in Jakarta, even if three doctors have said they think you have oral cancer, they’ll easily keep you waiting a couple months to get a biopsy within the state medical system. Meanwhile, zero attempt is made to keep kids from buying cigarettes (quite the opposite).

    At the same time, selling drugs is easier said than done, and eventually accomplished through a ruthless amalgam of domestic politics, trade diplomacy, and either military or mafia force. So maybe it’s good this is a court decision rather than a military coup or a purchase order for helicopters.

    But the take-home for Unc. Sam is that, if you can’t even prevent ruthless foreign profiteers from legally  selling candy ciggies to your kids, then just imagine — ’cause most of the time they’re not even going to bother to sue.

    Most favored flavor status for menthol?   I guess the WTO agreed with the kretek makers — it just sounds ridiculous. Like calling the other guy’s fag a dirty weed without hurting the fresh, flavorful image  of your own menthol-mix marvel.  But for backers of commodities like cocaine and cannabis,  even a drug war or two may go down as the normal costs of doing business.

    If I’m not mistaken, both cloves and menthol leverage eugenol as the key happy ingredient. Who cares, however, because the point is that kids are always going to hit exotic new substances, whatever they may be. If the local stash in Cincy runs low, they’ll order more from Indonesia.  So the focus on tobacco, which tons of smokers admit has a miserable cost/benefit ratio,  is unjustified.  Alcohol ( about as anti-social a drug as you can find) may also get much more attention that it deserves.

    Kids (and adults) aren’t really as stupid as people think. The problem is they tend to be misled by the semi-well-intentioned regulation efforts of government/business. If you chose your drugs based on U.S. law, then you’d be smoking and drinking — both extremely legal  in the U.S. –and you’d be 15 times more likely to get oral cancer (a new risk factor we just learned about and you should quit at least one, today).

    Meanwhile, having gotten into the business of helping market cigarettes, the the U.S. government ought to be wondering, just about now, what the hell it’s doing. Cigarettes sell fine, no need to mess with the flavors.  And it’s too complicated — work for chemists, not politicians.

    It just seems that nothing’s working and a new paradigm is needed. Both alcohol and tobacco should be forced to compete on a fair playing field with other roots, bark, berries, brews and every other type of thing that people drink, snort, chew or otherwise ingest. Because honestly, who would smoke a bunch of unknown stuff rolled up in a paper tube with a silly flavor? Why?

    Would alcohol and tobacco really be able to compete for people’s recreational drug dollar it it weren’t for the legal cachet? Pride in the quality of one’s national tobacco seems to me so old school. There are a lot of safer drugs.

    What happened to e-ciggy? I think you’ll find it’s safe enough. Problem is, it doesn’t help move all this tobacco that’s piling up in the warehouses of Java.

     
  • Sharehouse Jakarta 1:00 pm on March 15, 2012 Permalink | Reply
    Tags: , ethnography of cancer, , , informed consent Indonesia, oral cancer asia   

    Strangled for Info

    No good news re: Pak. Fadil. I suppose we should begin looking for patients with less complicated cases. It’s worth pointing out that the main point here is information. To make the system work you need lots of it. When my father-in-law went in for an operation at RS Fatmawati yesterday Mona pointed out that this was operation No. 6 for us in less than 3 years.But actually it’s 8, since Fahri had 3. All of them successful and some of them brilliantly so, such as little Fahri’s.

    The only time u’re pretty much guaranteed good info is when they’re putting you under the knife. Informed consent at its finest: you’ll hear them clearly call “family of [patient’s name].”

    Next, they’ll determine your relationship to the patient. Now they’ll begin to speak clearly and slowly, looking you in the eye. Lumayan — not bad, that is — for a doctor. And they’ll emphasize the most important parts of what they’re saying like *maybe won’t wake up* and *not necessarily a simple operation.”

    And you can ask questions and get clear answers. Very unlike the ordinary office call. That’s when it dawns on you that the case isn’t so complex that doctors are at a loss for words, or totally puzzled by it. It’s just that they’re not around nor inclined to speak to you. It’s a one-way info scene. They give orders. The end.

    Of course the operating room situation is dif. That’s because it’s a bargaining scenario. You have to give them consent so they can go ahead and do what they’ve already planned to do with their OR for the morning. And they can’t be wrong. You need to accept the risk of that.

    Anyway, for me the OR epiphany at #RS Fatmawati yesterday ahead of Pak Fadil’s tracheostomy was that the lung infection we’ve heard about (is it pneumonia or what, don’t know) can be related to Pak. Fadil’s difficulty breathing. And this can help his lungs heal up.

    Which leads one to check the net again and you see that besides the tongue situation, the pressure through the neck — lymph nodes ? — is part of the breathing problem. So the breathing tube make sense as a workaround.

    But that’s the kind of thing you won’t learn until you literally just about can’t breath.

    Speaking of two-way flows of info, we really appreciate the comments, of which there have been some real substantive ones lately. Terimah kasih and GET WELL SOON!

     
  • Sharehouse Jakarta 6:03 pm on February 2, 2012 Permalink | Reply
    Tags: , best pratice Indonesia, brachytherapy indonesia, , , ethnography of cancer, , glossectomy indonesia, hospital management, kanker rs cipto, malpractice Indonesia, , ugly practice Indonesia   

    Pak Fadil Gets Uncleared for Brachytherapy 

    When doctors talk fast and agree to everything you say, they’re about to refer you to another doctor. When doctors speak slowly and clearly they’re getting ready to give you bad news.

    Doctors use all types of ruses to avoid patient concerns including simply ignoring patients when they speak.

    But when they need something from you — typically informed consent in connection with an operation — they’re surprisingly good communicators.

    “I have some important information for you. This information is based on the decision of the all the doctors who are treating you. It is based on the facts of your case and is made in your best interests. First, we’d like to show you this MRI.”

    Anyway, the doctor sure was speaking slow today. The news was that there will be no implant and there won’t be a glossectomy.

    I can’t count how many times they’ve gone back and forth on the glossectomy. They try to blame in on the patient: “Not ready to have your tongue removed are you, sir. Well, well. Let’s see what our other options are.” But they’re always a couple of doctors meetings away from knowing if they themselves are ready.

    I’m beginning to wonder if the brachytherapy “offer” (doctor’s own words) was half-baked as well. It began with a signed order, and progressed to blood tests, meeting with the anesthesiologist and a meeting with the patient, presumably seeking consent. But never anything like a date. Besides, do they just have small radioactive bits of metal lying around in the desk drawer. Doesn’t that have to be ordered? What does it cost. I don’t really know what to think.

    One thing they didn’t ask for was an MRI. That was our idea. They were still referring to a CT scan taken before radiation therapy started and raised the question of cost and suggested maybe another CT scan would be enough. Not only did we end up paying for the MRI we had to scout around town to find a working machine that could take a picture of a tongue because the one at Cipto was going to be out of order for two weeks. (Cipto referred us to Cikini which, it turns out, doesn’t have the right machine.)

    The MRI was part of the reason there’s going to be no brachytherapy. In fact — I had her repeat this a couple of times in colloquial Indonesian just to be sure — they’re not going to do anything.

    Fine, a lot of times you can’t with cancer. But there’s a certain irony given all the hustle and bustle and talk of options and operations. To end up with “palliative” treatment and — upon inquiring about pain control — a referral to anesthesiology.

    And they tell you to be there at 10:00 sharp to get the important information about whether your dad’s tongue is going to be removed. But they can’t be bothered to show up and give you the information. It was almost noon before Mona called in (from Fatmawati where she was helping another cancer patient this morning) and coaxed the doc downstairs by getting her to feel sorry for us.)

    For months we’ve been focused on these apparently non-existent options the doctors have supposedly been debating. The brachytherapy isn’t an option because docs “aren’t sure” whether the area visible in the MRI that nearly bisects the tongue at the back is the tumor or what’s left over following radiation and chemo. Putting radioactive spikes in it might be the last straw if it turns it’s former tumor rather than actual tumor.

    Somewhat puzzled (then and now) I asked, so why don’t you take a sample and see?

    Doctor wills pencil purposively. “We can do that. Would you like to do that?”

    Whoa.

     
  • Sharehouse Jakarta 4:29 pm on May 20, 2011 Permalink | Reply
    Tags: , care-seeking behaviour, , ethnography of cancer, health policy, low income countries   

    Update: Jamu (hopefully) cures cancer / looking for kost near RSCM 

    Pak Fadil was in good spirits this evening. He said he’d been able to eat. Goats milk and herbals from Madura brought back his appetite. Ironically, after so many years of hearing the nonsense gospel of pills-cure-colds, Indonesians are forgetting how to make jamu — the herbal remedies used here since time immemorial. But when you have cancer it seems like every doctor’s  a hippie — have some broccoli juice, grapes are good, have you thought about mangosteens and Soursops?

    Before the biospy we provided the ‘Pak with plenty of buah merah (Pandanus Conoideus) capsules and dried mahkota dewa AKA madewa (Phaleria macrocarpa) for tea. I hope he’s continued to take it. The research is promising, as far as I know.

    Mona was upbeat evening. “That’s it. We’re done. All already. Chemo and radiation to start next week, the the Buddhists are going to take care of everything.”

    In the face of truly challenging health problems that her family has — for some reason — had to face over the last few years,she has always been shockingly optimistic — and practical. He thinking seems to be, if I can’t actually cure the disease, then let me focus on finances and logistics. For months — years actually — she ha been tirelessly waits in line and networking with the hospital staff so that her family members will be there with all the paperwork in place when their name is called.

    Anyway, we’re looking for a kost near RSCM now. The mes (a hostel type arrangement) is inexpensive enough, but we’re afraid that there might diseases and even bad vibes circulating there.

     
  • Sharehouse Jakarta 2:34 am on May 14, 2011 Permalink | Reply
    Tags: , ethnography of cancer, get an MRI in Indonesia, radiation therapy Jakarta   

    Update: friends we've had good fortune and bad After… 

    Friends, we’ve had good fortune and bad. After months of waiting for Pak Fadil to start radiation treatment at RS Cipto they sent us hospital shopping again yesterday because the MRI unit at Cipto isn’t working. I’m told we have to have MRI results for radiation to start at scheduled next week 19 May

     
  • Sharehouse Jakarta 5:11 pm on May 4, 2011 Permalink | Reply
    Tags: cancer hospitals bali, cancer hospitals indonesia, , , ethnography of cancer, , tobacco public health   

    Update: headed to hospital tomorrow Pak Fadil begins chemo… 

    headed to hospital tomorrow. Pak Fadil begins chemo. MAU KE RUMAH SAKIT BESOK; PAK FADIL MULAI PENGOBATAN CHEMO

     
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