Kything

there was a moment back in college, more than a decade ago, that transformed my life in a profound way.

while walking the corridors of bellarmine hall, there was a note tacked onto the cork board. “volunteers needed,” it said.

back then, i was as lost as anyone else. you had all this energy to do something good… but there was no outlet to let all that goodness out.

some of my classmates joined the theater group. i did too, for a short while. but somehow, it wasn’t for me. the idea of acting or pretending… well, i wasn’t one to pretend. i was born to do concrete stuff.

some refused to grow up. they stuck to their barkada, treating them like they were the most important people in the world. they went and organized parties, raced cars, got the coolest stuff… not for me, i said. there is a world out there. i needed to find my place in it.

others stuck to their books. spending hours at the library, amassing such knowledge… a dialogue with them is like talking with an encyclopedia. they had all these esoteric theories and would talk about such intellectual stuff… talk was not for me. i was born to work with my hands.

volunteers needed, it said. and volunteer i did.

children with cancer. whoa that’s heavy stuff. and what?? we have to go to the hospital every wednesday morning? to play?

little by little, i got into it. it was like the kiwi movie on youtube. you build yourself up for something. maybe this was it for me. i jumped off the cliff… and began to live.

you get to know their likes and dislikes. you get to know what makes them smile. you get to know what scares them. you get to know how much your help means to them.

you see them happy, and you’re happy. when you don’t see them at the clinic, you’re even happier, because it meant they’re not needing such intensive treatment.

when they die… it crushes you.

you are really, really Sad for weeks. but eventually, because you too must grow, you get up and do it again. and do it so much better.

i might not have been able to cure any cancer. these children had doctors for that. they needed someone to help them understand their unique world. once they understood the concept of cancer, they get very angry. very withdrawn.

their parents blame themselves. such guilt. such unnecessary guilt.

and i just absorbed all that negative energy… and strived to change it into love and hope.

kything. the giving of self. it meant this constant striving to change all that is negative — into something glorious. anyone can change the world.

for me, it started with a message on the corkboard.

thank God for KYTHE.

A Loss of Trust

He was diagnosed with stage IV rectal cancer. It was everywhere. We talked of systemic chemotherapy. After a few cycles, a repeat evaluation showed that his cancer had progressed. Latest evidence says that with current treatment, his chances of being alive at 5 years is 8%. Very slim. He recently developed complete bowel obstruction which, if unrelieved, will kill him over the next few weeks.

we talked about his goals. as his physician, i needed his guidance. i needed to know what he considers important. i needed to know what he wanted me to do.

first, no pain. pain is perhaps the most scary thing a person with cancer thinks of. with pain is suffering. he did not want to suffer. he doesn’t have to.

second, maintain his quality of life. which meant providing his body nutrients and sustenance in whatever way. since his bowels are not working, this means feeding him through the vein. this also means regular monitoring of vital blood chemistries, to make sure he is receiving the right mix of food.

third, no unnecessary cost. there will always be people, good-intentioned, who will recommend this or that treatment. to go to this or that place. to see this or that specialist or “specialist.” but what worked for one, does not always work for all… testimonials are not good medicine. with far-advanced rectal cancer and complete bowel obstruction, the real options are very limited… unless the obstruction is relieved.

and fourth, opt for cure, as long as all other goals are in line.

we had an understanding. with the failure of first-line medicine, he did not want to undergo second-line treatment because the side effects of the chemotherapy was devastating.

frantically, the family began to panic. they listened to stories of other people cured of cancer. it’s like grasping a semblance of a truth in a haystack of words and misconstrued notions. i patiently sift through their stories and dissect away the lies and empty promises. it is not an easy thing to do. sometimes, i needed a day or two to consult other people and research on my own. always, i was in search of the truth and how these options can work within our goals.

mostly, i played a devil’s advocate. it seemed like with every story, when i gently gave them its merits and false claims, they did not want to hear it. to them, i was the bearer of bad news.

i continued to talk of hope and the need to search for answers.

then…

someone came and promised that he will live an additional 30 years. but he has to forsake his current treatment. he needs coffee enemas to detoxify his liver and gallbladder. he needs to eat raw pancreas and liver. if he cannot eat this, wait there’s an option — pork liver and pancreas comes in a capsule you can get through me. he has a friend in another hospital who is a doctor and will take over his care.

i wanted to talk to this person with his promises because i was interested to know his methods, qualifications, and plans. i left my phone numbers. i never did find out why he avoided me. the next phone call i get was from the family telling me they have to leave now. i sensed their urgency, and probably their loss of trust. i asked that whoever it was that was taking over to call me so that i can endorse his plan of care, his goals.

nobody called. was it because the family did not want me to confront this new source of hope and shatter it?

A Loss of Trust

He was diagnosed with stage IV rectal cancer. It was everywhere. We talked of systemic chemotherapy. After a few cycles, a repeat evaluation showed that his cancer had progressed. Latest evidence says that with current treatment, his chances of being alive at 5 years is 8%. Very slim. He recently developed complete bowel obstruction which, if unrelieved, will kill him over the next few weeks.

we talked about his goals. as his physician, i needed his guidance. i needed to know what he considers important. i needed to know what he wanted me to do.

first, no pain. pain is perhaps the most scary thing a person with cancer thinks of. with pain is suffering. he did not want to suffer. he doesn’t have to.

second, maintain his quality of life. which meant providing his body nutrients and sustenance in whatever way. since his bowels are not working, this means feeding him through the vein. this also means regular monitoring of vital blood chemistries, to make sure he is receiving the right mix of food.

third, no unnecessary cost. there will always be people, good-intentioned, who will recommend this or that treatment. to go to this or that place. to see this or that specialist or “specialist.” but what worked for one, does not always work for all… testimonials are not good medicine. with far-advanced rectal cancer and complete bowel obstruction, the real options are very limited… unless the obstruction is relieved.

and fourth, opt for cure, as long as all other goals are in line.

we had an understanding. with the failure of first-line medicine, he did not want to undergo second-line treatment because the side effects of the chemotherapy was devastating.

frantically, the family began to panic. they listened to stories of other people cured of cancer. it’s like grasping a semblance of a truth in a haystack of words and misconstrued notions. i patiently sift through their stories and dissect away the lies and empty promises. it is not an easy thing to do. sometimes, i needed a day or two to consult other people and research on my own. always, i was in search of the truth and how these options can work within our goals.

mostly, i played a devil’s advocate. it seemed like with every story, when i gently gave them its merits and false claims, they did not want to hear it. to them, i was the bearer of bad news.

i continued to talk of hope and the need to search for answers.

then…

someone came and promised that he will live an additional 30 years. but he has to forsake his current treatment. he needs coffee enemas to detoxify his liver and gallbladder. he needs to eat raw pancreas and liver. if he cannot eat this, wait there’s an option — pork liver and pancreas comes in a capsule you can get through me. he has a friend in another hospital who is a doctor and will take over his care.

i wanted to talk to this person with his promises because i was interested to know his methods, qualifications, and plans. i left my phone numbers. i never did find out why he avoided me. the next phone call i get was from the family telling me they have to leave now. i sensed their urgency, and probably their loss of trust. i asked that whoever it was that was taking over to call me so that i can endorse his plan of care, his goals.

nobody called. was it because the family did not want me to confront this new source of hope and shatter it?