What's worth fighting for?

Dear Ones:

My cell phone rang just as I arrived at the Pattaya Bowl.

When I saw that it was Andy I held my breath. I was on a school trip and he would never have called unless it was important. It must be about Mama, I thought. My mother-in-law is in the end stages of Alzheimer's.

I was in Pattaya with my seventh graders and the rest of the RIST middle school. We had just arrived at the bowling alley in two buses. Six teachers and 57 students streamed out onto the sidewalk and gathered in tight little knots in the lobby of the bowling alley. It was October 3, 2008 shortly before 10 a.m. The day was sunny and it promised to be another hot and humid day in Thailand.

I steeled myself and answered the phone, certain it was bad news about Mama.

Instead he said, "It's Titi," referring to his younger brother. His voice sounded normal. Even casual.

"What's up?" What could be so bad?

"Titi has terminal leukemia," he said to me. "He needs a stem cell transplant."

I don't remember what I said in reply. I know I was in shock. Ten words. It's funny what you remember on the day you hear unexpected news. Mars, the activities coordinator, screamed at the students above their noisy chatter to go and rent their shoes. It's effective because every single student sauntered obediently to the shoe counter. Mars has none of the lower vocal registers so this makes the children afraid of her.

I wandered around the bowling alley taking videos of the kids giving each other high fives for strikes and pouting when the ball rolled disobligingly into the gutter. Meanwhile, another part of my mind was digesting the information. I was thinking, this can't be happening again. I went through this crucible before, how can I be tested again? That familiar feeling of dread crept over me. First, there is the disbelief. I must be dreaming. I will wake up soon.

I texted Andy. Did you say Titi??? He texted back. Yes.

After you get through the disbelief, you find yourself wondering, how did I miss this? Titi knew in December, after his company physical, that he had an elevated white cell count. According to Mimi, no one, incredibly, advised him to follow up. He did not know it was so serious because he felt fine. So he did nothing. But Mimi is an unreliable witness. She always protects her little brother; she insists it was not denial. So it wasn't until he had seen his family doctor in April that he was diagnosed with leukemia. Even Lek asks, why did he wait so long? Titi did not tell us, for the lamest, most idiotic reason: he didn't want to bother us. Bother us? Andy and I know that any recriminations now are meaningless. The important thing to do now is to help him get well again. Attitude is everything.

Initially, his hematologist put him on an experimental drug which worked wonderfully, but now his leukemia is no longer responding to it. He went from the chronic stage of CML (Chronic Myelogenous Leukemia) to the accelerated stage to the acute stage called the "blast phase" in a matter of weeks. Titi now needs a stem cell or bone marrow transplant. Andy and his sister Mimi readily submitted to tests to see if they would be compatible donors. They were extremely disappointed to discover they were not. The odds of survival are terrible, even with the transplant. But I know from Malika's experience, that getting hung up on the numbers is not productive. We have to take each day as it comes.

Now Titi is in a sterile room at the hospital just 5 minutes from his house. To enter this room, all visitors have to be masked and gowned. On Sunday, he began a week of chemotherapy in an attempt to get his leukemia back up to the chronic stage. We are hopeful. Meanwhile, the hematologist is consulting the donor registries in Asia to find a match. A sample of his blood was sent off to Italy last week to find out if it is a particularly virulent mutation of CML.

Lek and Nicky stay ovenight in the family suite next door to Titi's sterile room. The suite is equipped with its own bathroom and is furnished with a sofa (not a bed, unfortunately), a table and three chairs, a microwave oven, a TV and a refrigerator. There is an IV stand for hanging up the hospital gowns. Most of the comforts of home.

Nicky is a resourceful child. He has brought a ping pong paddle and an orange ball to amuse himself. He tries to see how many times he can hit the clock on the wall with it. He plays magic tricks with his uncles, and when he's bored, plays with his Gameboy.

Lek weeps, looking drawn and tired. Her brothers and sister and some of their children have come by the hospital to offer their support. She is afraid. Afraid that Titi has given up, she says. She will not say aloud what is really her greatest fear. It might come true.

Everything has happened so quickly no one has had much time to adjust. Indeed, we are riding the cancer roller coaster. A familiar ride, as it happens, for Andy and me. At this time of year, Malika's spirit is so very near, I feel her gentle touch. She would have been 26 years old at the end of October. I am surprised to find my memories have grown dim, but the emotions have not lost their edge. A long time ago, we found another hospital a familiar place, where we laughed, cried, hoped against the odds, coped with disappointment, winced at the doctors' relentless honesty, and learned to accept with gratitude the kindnesses of strangers. In this replay, nothing has changed substantially, only the drugs are different: imatinib, dasatinib, and sprycel. Melodious names, magnificent sounding, filled with hope--for other people.

Titi, the center of all this concern, looks fine. He complains only of feeling weak and sometimes dizzy. When he was admitted to the hospital on Wednesday night, he had fluid in his lungs, probably because of the sprycel because all tests for infection have been negative. He has a good appetite. Lek's cook makes special food to bring to the hospital, food that will build his strength up. Titi does not wish to read, do crossword puzzles, play Scrabble, or do any of the things Andy and I enjoy as diversions. Lek's brother suggested relaxation through meditation but Titi would rather medication. Inexplicably, he zonks out in front of the TV watching cable or bad action movies on DVD. We have fallen into a routine when we go into the sterile room, masked and gowned. Chat awhile, then all conversation ceases as we watch the TV screen in comfortable silence. One of the videos starred a moving tree stump that looked a lot like Steven Seagal trying to emote his way through Bangkok. Ah well. One must humor the patient.

The political circus that I wrote about in the first blog has continued. Joining the PAD protests is Chamlong, a former Bangkok governor who has better street cred than the pampered businessman Sondhi; Chamlong led the May 1992 demonstrations against the junta. Since I last wrote, Samak had been forced to resign for violating the constitution. To everyone's consternation, his party immediately re-nominated him and he accepted. However, he was supposed to decline; the re-nomination was to save his face. (Remember, this is Thailand.) When the time came for parliament to confirm him, none of the coalition party leaders showed up for the vote so there was no quorum. Amazingly, the rule of law sometimes works here. Samak down--and out. Nevertheless, the PAD continues their protest because Samak's successor is Thaksin's brother-in-law. I had started to write a follow up blog about it which I had titled "What's worth fighting for?" All that seems irrelevant now. I decided to keep the blog title though, because for us, this battleground has shifted.

Walk good,

Jo Anne