Dear Ones:
It's now confirmed that Titi's particular leukemia is what we feared; that untreatable mutation his doctor warned us about. His only recourse is a stem cell transplant. Though no one in Thailand has ever done a stem cell transplant of this type, Titi is willing to try it. He has refused to go to the States where he says, he will only be a number to the doctors there. So he has asked his cousin, a doctor at Ramathibodhi Hospital, and his classmate, the head of the hospital, to help put together a team of specialists. His hematologist found a donor in Taiwan so we are waiting for everything to be assembled. Meanwhile, Titi is getting weaker and he is fighting an infection.
Since I last wrote, there have been many thoughtful messages from family and friends who offered their support. Some of that support has even come from strangers and we are immensely grateful for their kindnesses. One such kindness was from a woman who is undergoing CML treatment herself. She offered to send Titi a supply of Gleevec (imatinib), because it worked so well for her. I was very touched by her offer of help but unfortunately, Titi's CML is Gleevec resistant.
It is peculiar how I feel; both abandoned and excluded. Abandoned, because medicine can do nothing more than offer a distant hope. The doctors leave us alone for other patients they can help. Excluded, because Titi is not a member of that select group of lucky survivors who can put cancer behind them. Curing cancer is such an uncertain business, and there are no guarantees.
Meanwhile, the political circus has reached new heights of brazen behavior. As you've no doubt heard on the news, the People's Alliance for Democracy (PAD) has occupied Suvarnabhumi Airport, halting all flights in and out of the country. Our school principal went to the Philippines for a conference on Monday. She cannot get back in the country. Two Canadian friends who are visiting Thailand are in a similar predicament; they cannot leave. The Malaysians from Proton who came to Bangkok for the Motor Show are also stranded.
I can't say when the situation will be resolved. Everyone is waiting. On Wednesday November 26 the army chief publicly advised the Prime Minister to dissolve parliament and to call for new elections. He insisted that there won't be a coup. He even suggested the PAD remove themselves from the buildings they have occupied. Since August they have staged a sit-in at Government House and they have also taken over Don Muang, the domestic airport. However, the PM says he is staying put, and the PAD says they're not moving, no how, no way. In the face of such pigheadedness, I am trying to decide which is the larger principle at work here; trying to best serve the country or their own interests.
Walk good,
Jo Anne
Wednesday, November 19, 2008
Saturday, November 1, 2008
Alternate Routes
Dear Ones:
On Thursday, I came home from school in a heavy tropical downpour. As I entered the tollway, it was slick with water and my windshield wipers swished water away furiously. Still, visibility was poor, and I wondered since I couldn't see the road ahead clearly, shouldn't I get off at the nearest exit? Then I thought, I'm committed. There is no exit between here and Srinakarin Road. There are only alternatives: Suvarnabhumi airport, Bang Na, Onnut. I thought how apt this metaphor is for traveling the cancer road.
Titi has been tolerating the chemo surprisingly well. This is the beginning of his second week after chemo and so far so good. His counts have been steadily dropping but, amazingly, he's not as weak as when he was first admitted to the hospital after three weeks on the sprycel. For exercise he paces his room and the doctor has said he can walk the corridors outside the sterile room provided he wears a mask. The chemo is coy. We can't see what it is doing inside. Every day, he wonders--is this IT? What could happen to me today? To him each new day is an apprehensive event. I cannot imagine what that fear must be like. No one talks about it but it is on all our minds. Patrick, Andy's cousin in Washington, DC, has given us some new leads to pursue and a doctor-friend of his to contact. Possibly, Titi could join a study for a new experimental drug in Singapore. We haven't exhausted hope yet.
I greet Titi, how are you? In reply, he hands us his complete blood counts to read, but it lacks syntax. It is another language; terse, encoded. Anisocytosis. The medical jargon puts me off. Coincidentally, I have just finished reading Bloodletting and Miraculous Cures by Vincent Lam, a Canadian doctor. One of the characters, Dr. Chen, cures a woman's hiccups by having her drink rapidly through a straw while pressing on the tragus of both ears. (The tragus is the triangular fold of flesh in front of the opening to the ear canal). It works. A miracle. But he can hardly explain why it works. It reminds me of the children I teach; some of them do well in spite of me. At the parent-teacher conference last month, a parent asked solemnly, Will my child pass the test to transfer to Ruamrudee? We are a feeder school for Ruamrudee and there is nowhere else these parents want their children to be than at Ruamrudee. But there is no method to make such a miracle happen. It can't be cured like the hiccups. The students' parents cautiously negotiate the intricacies of their children's education in English, and I try to keep the jargon to a minimum; they are also ESL. In reading Lam's book I felt like a visitor to another dimension that is at once familiar (it's Toronto) yet strange (it's a hospital). It makes a glossary absolutely necessary: PEA, lytes, and my favorite, bigeminy. By the way, none of these terms have anything to do with a green vegetable, a light fixture, or a mia noi (minor wife). Professions, like disease, keep the uninitiated at arm's length.
Meanwhile, Mimi manages her mother's care with awesome efficiency. I think it's because she knows how to delegate, and if she doesn't know something, she knows someone who does. She's one of those people who communicates by the FWD. You don't hear from her but she's got you on her mailing list. Her speciality is the health warning. It is risky to send health warnings to the techno-literate. We will invariably want to show that we know more than you. The latest FWD was a cancer scare about bottled water "from Johns Hopkins." I recognize the tactic. Use a famous medical research facility to lend credence to the so-called warning. According to the article, PET bottles leach chemicals into the water when the plastic is heated or frozen. I immediately went to my favorite urban legend website, Snopes. com and checked it out. It discredited the frozen bottle issue. I asked Titi, who has a master's degree in chemistry, and he said that we shouldn't keep PET bottles in the car in hot weather because heat causes chemicals in the bottle to leach in the water. Like all urban legends, there are half-truths that suck you in. I've linked some sites of interest to my blog so you can check them out yourself.
Sometimes I wonder if I have forgotten anything. I feel like I have so many balls in the air and I'm afraid to drop one. In addition to all this, we decided to go ahead and renovate the front of our townhouse. Six months after the new road was built, the Nay Chang has finally arrived at the end of the road. Literally, for he is now in our cul-de-sac. The road improvements prompted a flurry of home improvements. And as a result, the Nay Chang's business is roaring. Starting at mid-soi, Nara and Reto put in a new driveway, tile bordered with a gravel slurry. The neighbors disapprove of their design; the slurry will turn black, they say. No good. Everyone is now an expert on home improvements! Across from Nara, Mrs. Chang and her next door neighbor poured cement for their new driveways and rebuilt the common wall. Mrs. Chang lives in Taiwan now and makes infrequent trips to Bangkok. She left her front yard dull cement. Why spend more money since I'm hardly here, she reasons. But she will not sell her house. Her neighbor however, decided on mosaic tiles and columns for an added Moorish effect. The workmen worked their way towards us, to the herbalist next door. Though he lives in China he will come back, he says. Someday. Mrs. Chang and the herbalist think alike. Even I understand them. We Chinese need these havens. It is programmed in our genes to make sure we have a place somewhere in the world where we can feel safe. But safe from what?
Now that we have the Nay Chang's undivided attention, we negotiated his time, his fee. Over the weekend he got his advance from Andy and immediately went on a walkabout. He said he had to go to a wedding up country but he will be back at the end of the week. True to his word, he came back on Friday. I met his wife, his business partner, when I came home from school that afternoon. Her name is Oy, and it means Sweet. The Thai never use their formal given names, preferring nicknames. Andy tells me the Nay Chang's name is Ma, which means Horse. I am afraid to say it because if I get the tone wrong it might be Come instead, or worse, Dog. To be called a dog is an insult to a Thai so I've decided it will be safer to call him Nay Chang, which means Mr. Fixer. If I happen to mispronounce chang I would only be calling him Elephant, nothing worse.
Living here is necessarily filled with such calculations. What we can afford to renovate. What to call the Nay Chang. How well we can manage cancer. There are many alternate routes. The important thing is to keep moving, don't get stuck, and don't drop the ball.
Walk good,
Jo Anne
On Thursday, I came home from school in a heavy tropical downpour. As I entered the tollway, it was slick with water and my windshield wipers swished water away furiously. Still, visibility was poor, and I wondered since I couldn't see the road ahead clearly, shouldn't I get off at the nearest exit? Then I thought, I'm committed. There is no exit between here and Srinakarin Road. There are only alternatives: Suvarnabhumi airport, Bang Na, Onnut. I thought how apt this metaphor is for traveling the cancer road.
Titi has been tolerating the chemo surprisingly well. This is the beginning of his second week after chemo and so far so good. His counts have been steadily dropping but, amazingly, he's not as weak as when he was first admitted to the hospital after three weeks on the sprycel. For exercise he paces his room and the doctor has said he can walk the corridors outside the sterile room provided he wears a mask. The chemo is coy. We can't see what it is doing inside. Every day, he wonders--is this IT? What could happen to me today? To him each new day is an apprehensive event. I cannot imagine what that fear must be like. No one talks about it but it is on all our minds. Patrick, Andy's cousin in Washington, DC, has given us some new leads to pursue and a doctor-friend of his to contact. Possibly, Titi could join a study for a new experimental drug in Singapore. We haven't exhausted hope yet.
I greet Titi, how are you? In reply, he hands us his complete blood counts to read, but it lacks syntax. It is another language; terse, encoded. Anisocytosis. The medical jargon puts me off. Coincidentally, I have just finished reading Bloodletting and Miraculous Cures by Vincent Lam, a Canadian doctor. One of the characters, Dr. Chen, cures a woman's hiccups by having her drink rapidly through a straw while pressing on the tragus of both ears. (The tragus is the triangular fold of flesh in front of the opening to the ear canal). It works. A miracle. But he can hardly explain why it works. It reminds me of the children I teach; some of them do well in spite of me. At the parent-teacher conference last month, a parent asked solemnly, Will my child pass the test to transfer to Ruamrudee? We are a feeder school for Ruamrudee and there is nowhere else these parents want their children to be than at Ruamrudee. But there is no method to make such a miracle happen. It can't be cured like the hiccups. The students' parents cautiously negotiate the intricacies of their children's education in English, and I try to keep the jargon to a minimum; they are also ESL. In reading Lam's book I felt like a visitor to another dimension that is at once familiar (it's Toronto) yet strange (it's a hospital). It makes a glossary absolutely necessary: PEA, lytes, and my favorite, bigeminy. By the way, none of these terms have anything to do with a green vegetable, a light fixture, or a mia noi (minor wife). Professions, like disease, keep the uninitiated at arm's length.
Meanwhile, Mimi manages her mother's care with awesome efficiency. I think it's because she knows how to delegate, and if she doesn't know something, she knows someone who does. She's one of those people who communicates by the FWD. You don't hear from her but she's got you on her mailing list. Her speciality is the health warning. It is risky to send health warnings to the techno-literate. We will invariably want to show that we know more than you. The latest FWD was a cancer scare about bottled water "from Johns Hopkins." I recognize the tactic. Use a famous medical research facility to lend credence to the so-called warning. According to the article, PET bottles leach chemicals into the water when the plastic is heated or frozen. I immediately went to my favorite urban legend website, Snopes. com and checked it out. It discredited the frozen bottle issue. I asked Titi, who has a master's degree in chemistry, and he said that we shouldn't keep PET bottles in the car in hot weather because heat causes chemicals in the bottle to leach in the water. Like all urban legends, there are half-truths that suck you in. I've linked some sites of interest to my blog so you can check them out yourself.
Sometimes I wonder if I have forgotten anything. I feel like I have so many balls in the air and I'm afraid to drop one. In addition to all this, we decided to go ahead and renovate the front of our townhouse. Six months after the new road was built, the Nay Chang has finally arrived at the end of the road. Literally, for he is now in our cul-de-sac. The road improvements prompted a flurry of home improvements. And as a result, the Nay Chang's business is roaring. Starting at mid-soi, Nara and Reto put in a new driveway, tile bordered with a gravel slurry. The neighbors disapprove of their design; the slurry will turn black, they say. No good. Everyone is now an expert on home improvements! Across from Nara, Mrs. Chang and her next door neighbor poured cement for their new driveways and rebuilt the common wall. Mrs. Chang lives in Taiwan now and makes infrequent trips to Bangkok. She left her front yard dull cement. Why spend more money since I'm hardly here, she reasons. But she will not sell her house. Her neighbor however, decided on mosaic tiles and columns for an added Moorish effect. The workmen worked their way towards us, to the herbalist next door. Though he lives in China he will come back, he says. Someday. Mrs. Chang and the herbalist think alike. Even I understand them. We Chinese need these havens. It is programmed in our genes to make sure we have a place somewhere in the world where we can feel safe. But safe from what?
Now that we have the Nay Chang's undivided attention, we negotiated his time, his fee. Over the weekend he got his advance from Andy and immediately went on a walkabout. He said he had to go to a wedding up country but he will be back at the end of the week. True to his word, he came back on Friday. I met his wife, his business partner, when I came home from school that afternoon. Her name is Oy, and it means Sweet. The Thai never use their formal given names, preferring nicknames. Andy tells me the Nay Chang's name is Ma, which means Horse. I am afraid to say it because if I get the tone wrong it might be Come instead, or worse, Dog. To be called a dog is an insult to a Thai so I've decided it will be safer to call him Nay Chang, which means Mr. Fixer. If I happen to mispronounce chang I would only be calling him Elephant, nothing worse.
Living here is necessarily filled with such calculations. What we can afford to renovate. What to call the Nay Chang. How well we can manage cancer. There are many alternate routes. The important thing is to keep moving, don't get stuck, and don't drop the ball.
Walk good,
Jo Anne
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