Fellow travelers on different pathways

at the beginning of this journey, ate aiding asked me whether i had heard the recording of randy pausch's 'the last lecture'. i had heard a lot about it, of course. since it was a cause celebre among professors, teachers, and even seminar facilitators. i guess everyone looked up to him as an exemplary educator and a person living his last days to the fullest, asking for neither special consideration, much less pity, from the people around him.

actually, i didn't read randy's lecture until just a few weeks ago. one of the reasons it didn't appeal to me before i got sick, was that i knew it was grounded on his dying of an incurable disease. although i loved to boast that i wasn't afraid of dying because of 'encounters with a yaqui indian' or more popularly known as 'don juan', carlos castaneda's experiences with a peyote-imbibing mexican sorcerer, and because of my Catholic faith. (how can you fear dying when it only means being reunited with the God you swear you love with all your heart, with all your soul, with all your mind, and with all your strength. those two factors taught me to accept death as a constant companion. yet truth to tell, i never wanted to turn to him and face him squarely in the face. i kept him at bay, beside me, but only in the periphery of my vision. so randy's lecture was not as inviting to me as it was to others.

when i finally gave in to ate aiding's urging and downloaded a copy of randy's 'the last lecture', i felt a distant closeness to him. 'distant' because i never knew him, yet close because of connections i saw between us.

obviously, we shared the same illness, tho he had pancreatic cancer, the most lethal of cancers, while i had renal cancer.

i didn't major in computer science because the course didn't exist in the phils when i was in college, but i did go into computer programming.

he was a professor, and i did some sort of teaching. he loved stuffed animals, and so did i: stuffed squid, lechon with paella stuffing, rellenong bangus, chicken galantina.

and we both were able to make some childhood dreams come true. mine didn't result in anything as world-changing or consciousness-expanding like his did – floating in zero-gravity, making virtual reality a reality (or is it, realizing virtual reality? or making real virtual reality?), creating new courses that challenged students to learn simultaneously in diverse disciplines - but i got some of my own humble, selfish dreams done just the same.

my list of dreams included: 1) living in europe. done, 9 months in bonn, 4 years in madrid. 2) hitchhiking in europe. oh, very well done! 3) living out michener's 'the drifters' in spain, and to a degree, in morocco. de puta madre, tio! 4) coming home to do my little bit to end the marcos dictatorship. rallies in ayala, including one where i faced down a gun-toting marcos supporter, and the big one on edsa.

randy doled out some valuable pieces of advice: 'brick walls' (problems) allow us banner our dedication. 'don't bail', 'show gratitude', 'don't complain. just work harder.', 'be good at something', 'work hard.' and one i never really bothered with in my life, until lately, 'find the best in everybody.' amen. amen. and amen.

because i started feeling this affinity with him, i wanted to follow him on his journey from the first phases of his illness to the end. i looked for his story and found 'randy pausch's update page'.

http://download.srv.cs.cmu.edu/~pausch/news/index.html

his journey started in early sept 2006, when he was diagnosed with pancreatic cancer. he had a successful operation that removed all the tumor. he found a chemotherapy treatment that gave him a 45% chance of living up to 5 years. previously, his doctors had given him a 10%-20% chance of lasting that same length of time.

he went to houston from philadelphia for his chemotherapy that took 2 months, from nov to end dec 2006 . then another 5-month session back in philadelphia from late jan 2007 to end april 2007. after that, all indications were great for randy. he survived the chemo sessions with minimal discomfort, although he was fatigued for periods at a time.

may 2007 was a great time for randy. he had finished his chemotherapy treatment; his ct scan was clear and his ca19-9 tumor marker level was 9, which in his words, was 'well within the normal range'. he was well enough to resume his biking. he was able to play flag football with friends after a long absence, and that was only 6 days after finishing his chemo! he and jai even celebrated their 7th wedding anniversary with their children at a resort where he rode a zip line.

then at the end of may, he has an mri exam at john hopkins hospital and discovers a cyst and other lesions. his cancer is back. he has vaccine shots to arrest the growth of the tumors. his treatments take him till the end of july. he gets his last vaccine shot on 23 jul and expects to be back every 6 months for booster shots. he writes, 'Interestingly, this marks the last thing I can do to help myself, which is a little unnerving. I'm channeling that anxiety into starting to hit the gym with real vigor - building my body up in case there are more surgeries or chemo down the road....'

on 26 aug, he gets devastating news. a ct scan reveals he has 10 tumors in his liver and smaller ones in his spleen. the doctors estimate about 3 – 5 months of relatively good health left. after that, they have no way of telling how fast the cancer will progress, but they say it will not be a good way to go. he settles on pallative chemotherapy which will buy him a few more months, but the chances even of that are only 15% – 20%. There is no doubt about the diagnosis. in about a month's time, he will give his 'last lecture' in carnegie-mellon.

in the next months, he goes out of his way to enjoy his remaining days. he and his eldest son, dylan, take a 4-day father and son trip to orlando, florida. the entire pausch family celebrates halloween dressed as 'the incredibles'. in early november, randy and jai take a vacation on their own in virginia, and get to meet sting and the police at a concert. jai is a big police fan.

in the following months, the pallative chemotherapy works and keeps randy strong enough to receive the numerous awards he is granted. he is also commissioned by hyperion, the publishing arm of disney, to turn his 'last lecture' into a book. he works with the pancreatic cancer action network (PanCAN) to drum up funds from private donors and congress for research. he goes scuba diving in the cayman islands.

and most thrilling of all for randy, he is cast in the movie 'star trek: the future begins'. he has a very brief speaking part, but got to keep his own star trek uniform. how's that for making dreams come true?

in early march, randy receives a bit of good news and some bad news. the growth of his tumors seem to have been held in check. however, he has started to suffer from the side effects of his treatments. his chemo drugs have become too toxic for him. his kidneys are functioning at 50%; his blood pressure is up to 200/100. in addition, fluid is suspected in his abdomen which pushes against his lungs and heart, making it difficult for him to sleep on his back.

he is hospitalized and a needle tap is done to draw fluid from around his right lung. the fluid in his left lung is left to be treated with diuretics. he is very weak the whole month of march, but bounces back slightly in april, ready to do battle again.

then, good news! 'the last lecture' is launched and is an instant success. diane sawyer does a talk show on it. great stuff.

on 18 may, he and jai attend the carnegie mellon graduation. a couple of days later, he starts a new chemo treatment. a week later, he starts vomiting and has high fever. the chemo doesn't work. new drug combinations have to be tried.

on 26 jun, randy writes that he continues to recover, albeit very slowly. his ca19-9 level which started at 9 in jun 2007, then went to 94 in feb a year later, to 216 by the end of mar 2008, and then at 634 by mid-may, is now at 1400.

randy dies on 25 jul 2008. given 3 – 5 months to live 12 months earlier, he beats the odds. sadly though, he never reached his goal of 5 years.

my own journey started on 16 april, when i was hospitalized. on 23 apr, i had my radical nephrectomy. in simple terms, i had my right kidney removed because a mass had imploded causing me to piss blood. biopsy on the mass confirmed that it was a carcinoma.

a bone scan conducted previous to the operation, while i was waiting in the hospital for the urologists to arrive from a conference abroad and had really nothing to do, showed that the cancer had probably spread to my left lung and my right clavicle, down to my right arm. a subsequent ct scan showed the same thing. an mri done about 1-½ months later confirmed the bone scan and ct scan findings. the diagnosis was that my right bone structure had “osseous metastasis”. that's what traditional western medicine equipment said. traditional western medicine statistics said i had barely 6 months to live, maybe 2 years if i took the 'right' medicines.

when i consulted my alt med guide, he told me i did have slight traces of cancer cells in my left lung, but that the findings in my right upper bone structure was caused by osteoporosis, not by cancer, tho it had almost the same effect. my bone density was compromised and my bones were brittle; subject to fracture if i wasn't careful.

he said i could cure the cancer with his guidance. i could be free of cancer in 6 months my chances of success? 100% if i followed the protocol religiously. i couldn't help but like those odds. i liked it even more that he was giving me control of my treatment, my health, and my life. he spoke frankly saying that he woudn't be able to cure me. only i would be able to.

and you know about my conversations with God. He gave me the faith and the courage to make my choice of going with alternative medicine. 4 months on, i'm swimming 18 laps, i still drive myself around. (i'm not bed-ridden, nelia.) i function well. and hey! i look great at 160 lbs. my thick, wiry hair has even turned fine and soft. cris and nanay say it's because of my raw vegan diet.

if i had taken the 'gold standard path, i'd be down, net, about p500,000, be nauseous, feel weak, and really scared shitless, all thanks to the 'gold standard' drugs.

i don't mean to say that taking the western medicine path randy took is wrong for everyone, it's just not for me. but i do want to stress that my gratitude belongs more to God than to alternative medicine. He is the Healer.

i loved randy's 'last lecture'. he was intelligent, witty, informative, and above all, brave. yet it bothered me that in his whole lecture, not once did he mention God. his only reference to the spiritual was when he said at the start that he wouldn't talk about spirituality or religion, then joked about having a deathbed conversion and buying a mac.

even in his update page, the only mention of anything relating to God was after more tumors were found in his liver and was given only 5 more months of good health, he thanked carnegie-mellon, his church, his friends, and his family, in that order. even then, no mention of God.

i believe randy believed in God, but like most men of science, he seems to have believed in science more. he believed he had the best doctors in the world, and if you believe that you have 'the best doctors', then how can you look for other alternatives? science gave him 3 – 5 months of good health, and he believed. science told him chemotherapy is the best treatment available, and he believed. science said he had a 15% – 20% chance of lasting 5 years, and he believed. and you know what? what he believed came to pass.

i had a conversation recently with a friend of mine along the same line. the conversation went, 'we have very good doctors who have been taking care of us very well. but when the day comes that they tell us there is nothing more to be done, then we'll just have to give up.' it saddened me because when people say there is no longer any hope, that's when you should start to hope, simply because there is nothing left but giving up.

so, do i have any lessons learned? nothing nearly as profound as randy's. only this one – never give up!

whatever you encounter in your journeys, whatever obstacles, whatever hardships, whatever life throws at you. duck! then, move on. don't bail. don't stop. don't give up.

and that's life with benjie these days, enjoying your company on this journey of life, tho on different pathways.

Conversations with my God

i intended this post to be a short update, but it looks like it's going to be another novella. hope you bear with me and finish it to the end. i don't think you'll be disappointed.

these past 14 days or so, have seen me at my lowest point since i started this blog. the bad news actually started when i got my 'osseous metastasis' results from the mri. in my 'yoyo update' post (27 jun), i was flippant and seemed to view my condition without the seriousness it merited.

to some of you, i must have come off sounding either like an idiot, who had no idea what i was sick of, or a person in denial. i assure you i'm not in denial. i know i have cancer, and that's serious. as to being an idiot, well, i have to admit, i have my moments, but not when dealing with my condition.

i don't like to pity myself and i don't like people pitying me, so i make jokes about myself. but i realize there's no way i can stop people from pitying me. they look at me, and those who read this blog, see CANCER in bright, flashing lights shining above my head. 'what a pity. such a nice, entertaining, _______, and ________ (fill in the blanks with your favorite adjectives of me) fellow, and he's dying.'

i have this sneaky feeling, i'll be invited to less and less parties. people don't want to be reminded of death on their doorstep. this is totally normal and understandable. i'm cool with that.

but the way i see it, we're all dying from the moment we're born anyway. only thing is with my condition, i thought i knew, at least roughly, how long i had to live.

the monday before the report, my fbs (fasting blood sugar) count went to 141. that was the highest since i'd started my alt med treatment in june, higher even than my counts the 1st 2 weeks i was out of the hospital, while i was taking my hospital-issued medicines. i kept hitting high counts that week, and i didn't know why. i was sticking to my diet and my treatments. except that on certain days, i'd allow myself to get hungry and eat a lot of fruits. lots of fruits = sugar.

then on wednesday that previous week, another reminder of the proximity of death. i got word that chitong kabigting, our half-brother (one of my dad's 10 children from his 1st wife) had passed away. he was 64, but had been suffering from diabetes for years. i later learned from cecille, his daughter, that he had seemed to have just given up on life, refusing to see his friends, eating forbidden food, and later, refusing to take his medicines.

the following sunday, my brothers and i had already planned to meet at my place for merienda to celebrate 3 birthdays: our mom's birthday (26 jun), cris' birthday (29 jun), and my sister-in-law, arlene's birthday (1 jul). we just couldn't settle on a time. when saturday came around, we'd agreed we'd attend the last mass for chitong at loyola chapels before having dinner, instead of merienda.

sunday morning, i began to feel bad. after serving at the 7am mass and giving communion to the sick as is my regular sunday schedule, i decided to exercise a bit by just walking home with jeremiah. it was just an extra 15 mins walk, but i figured the sunshine would do me, and my complexion, some good.

but after breakfast, i started to feel nauseous and could hardly keep my breakfast down. i decided to lie down and slept until 11am, skipping my morning snack. i kept my scheduled appointments, but felt weak and slightly nauseous the whole day.

the next day, on cris' birthday, i ate my usual breakfast but developed diarrhea afterwards. the whole day, i didn't take solid food. for lunch, i had a glass of freshly made orange juice and another at 4pm; a glass of fresh pineapple juice at 530, and before going to bed. i even stopped taking all my medication.

i made about 7 trips to the toilet the whole day, and everything came out water.

despite that, cris and i went to the fiesta mass of sts peter & paul, and stayed for the fellowship dinner afterwards, but i didn't take a bite.

the next day, i felt better, so i had my usual fare for breakfast and lunch, tho in reduced quantities because i still felt nauseous. i took my medications again, except for one that was a laxative.

in the evening, i went to mass for La Virgen de la Rosa, the patroness of our parish. raul, the president of Cofradia dela Virgen de la Rosa, saw me and gave me a rose in honor of our Lady. all the roses were blessed by fr lito after the mass. since it was cris' birthday the previous day, i thought it would be a nice gift for her; a rose from the Blessed Mother to a mother.

despite feeling nauseous earlier, i actually ate a lot during dinner. i even finished up my daughter anne's pasta with putanesca sauce, which she purposely left for me.

the following day, wednesday, i ate my usual breakfast. but when i drank my medications, i immediately threw them up. i was nauseous. i went to bed, and tried to sleep, but i was very depressed.

it was the first time i vomited anything. i was weak and dizzy. i had started a new stage in my alt med treatment the previous saturday, and was warned i'd feel worse before i felt better again, but i didn't expect diarrhea, nausea, and bouts of depression.

my fbs that morning was 121. i weighed myself later and found i had lost about 7 lbs, down to 167. i had wanted to remain at 175 for the next 2 weeks.

i began to believe that my cancer was finally taking over. i was feeling all the symptoms; weakness, vomiting, nausea, weight loss. every little pain i felt, i attributed to my cancer. i even checked my hair until i remembered i wasn't doing chemotherapy.

i began to doubt my alt med treatment. what if it wasn't working after all? what if i should just have stuck to traditional western medicine? but that path also led to doubting my God. didn't He say He would be my Healer? what was He doing? was He doing anything at all for me? and i knew i was entering dangerous grounds. you can doubt what you're doing, you can doubt what your physician or alt med guide tells you, you can even doubt your wisdom and sanity, but when you doubt your faith and your God, what do you have left?

so after lunch, which i managed to hold down, i started doing some exercises. brief stretching and lifting some weights. and i decided to visit the the Blessed Sacrament that afternoon before going to mass.

despite the dizziness, i made myself take a shower and dress up. i walked to st andrew and went to the adoration chapel. i sat down after my opening prayers and asked Him to speak to me and to advice me. i immediately received 2 commands from Him. first, 'prepare yourself.' and second, 'I will come for you sooner than you think.'

my inner calm was shattered. as is my nature when things do not resolve themselves around me the way i want them to, i rebelled. how could my kind, generous God be so cold? i rejected the message.

'prepare yourself', was understandable and easy to accept. make myself ready spiritually for the Lord. go to confesssion. go to mass. receive the communion. pray.

but, 'I will come for you sooner than you think'? if i believed the statistics of patients in my condition, i had barely 5 months left. and He would come still sooner than i thought?

i refused the messages vehemently, but i also began to argue with myself. if i believed thatGod had told me that my treatment wasn't the critical factor; He was, because He was the Healer, how could i refuse to believe these subsequent messages i had received in the same adoration chapel, in the same pew? it would be illogical and inconsistent to disbelieve. would i believe only what i wanted to believe, and refuse whatever frightened me? would i ask Him to hold off, heal me first, and only then, come for me?

painfully, i forced myself to objectively consider the messages, especially the second. if that was God's will, i not only had no choice in the matter, but, to be true to my faith, would have to accept it willingly, gladly. it was very difficult, but what choice did i really have? i could rail about the injustice of it all. beat my breast and say, 'here i am surrendering myself totally up to You, and this is how You repay my faith and trust?'

i began to accept the messages slowly. sadly, with fear, but with a resolution that surprised even me. fine. i'll prepare myself. and i would see the Lord sooner than i thought. no more doubts. just acceptance.

i prayed to the Lord for strength to continue accepting His will in my life, or my death, as the case may be. i thanked Him for His messages. i tried my best to mean my gratitude, but it wasn't easy. i went to mass with His words heavy on my mind.

i went home and looked at my family, and managed not to be teary-eyed. i hugged my daughter briefly, but tightly. i made sure to kiss my younger sons goodnight. the older ones would find it strange should i try to kiss them at all. i was worried cris might notice my sudden tenderness. later, i would hold her and tell her i loved her.

i agonized whether to share the messages in this blog at all. after reveling in the goodness of God when He assured me He would be my Healer, how could i reveal Him going back on His word? after expressing gratitude over His benevolence, how could i tell everyone that He had withdrawn His support?

but i knew that i would have to. i had to remain truthful and consistent. if i had published His 'I am the Healer' message, i had to publish these messages too. whatever they meant to me, however hurt i felt with them, they were His messages to make known, not mine to withhold. still, it has taken me time to gather the courage to write this update.

the next morning, i was so depressed by the messages that i remained in bed, listless and feeling sorry for myself. but after lunch, i had to finally tell myself to cut it out. giving up is something that's acceptable neither to me nor to God. if He came for me, ok, i'd go, maybe not as willingly as i want to believe, but i wouldn't kick and fuss. i would be prepared and ready.

i lifted weights. that perked me up. then, i decided to visit the Blessed Sacrament again. after my opening prayers of adoration and thanks, i again sat down (not in the same pew as the last night, but in the opposite side. no, i'm not superstitious. someone was in my usual seat.) and asked God for guidance.

His voice was suddenly like thunder in my ears. “so, I am coming for you in 3 months? you know My thoughts now? you are privy to My timetable?”

if i was having a conversation with God, i'd be stammering. i was confused. 'but didn't You say You were coming sooner than i thought? and didn't i read that the mean average lifetime of someone in my condition is 5.67 months? so, i thought You'd come in 3 – 4 months because 2 months have passed since my cancer was discovered.'

God: 'did I say 5.67 months? are you able to read My mind?; in my own mind, i was on my knees cringing. 'I will come, when I will come!'

me: 'but i thought...that You had decided to take me already. i have cancer. i've started to feel weak. i vomited this morning. why would You extend my life? i can't believe You think i'm that worthy or deserving.'

God: 'I will send my graces to whom I choose, whatever graces I choose, and when I choose! My gifts do not depend on what you do, but on what I do.' by now, He must have started to take pity at my trembling figure, and His voice softened. 'you cannot make yourself deserving. you are deserving because I say you are.'

He continued: 'prepare yourself, not only spiritually, but also physically. strive to live. do not wait to die. always choose life.'

i don't remember the actual words He used anymore, but i think these convey the message i received that evening.

well, of course, i cried tears of relief. the burden of 'knowing' exactly when i would die was lifted. i wouldn't have to look at my family and think that could be the last time i would see them. i always thought it would be better to know when the moment of death would be. well, maybe not very exactly. mas o menos, is good enough.

i know i will die, maybe sooner or maybe later; but it is not for me to speculate about. it was not for me to anticipate. the Lord will take care of the matter for me.

today, 5 days later, i still feel a bit nauseous after meals. i'm still battling a bit of diarrhea. i'm weak and sluggish. but i've made up my mind to trust in my God and not to second guess Him. i can't anyway.

i've always held another view of death. if i really, really believe in God. why should i be afraid of death? i should be happy because the purpose of life is to be reunited with God, and death is nothing but being with God.

the question now is, am i a fool to talk with God the way i do? am i insane to think that God answers me back when i do talk to Him? or am i a mystic carrying on conversations with God?

actually, i'm just benjie, living life as benjie, talking and walking with the Lord.