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.

Staying the course

i've deliberated these past weeks whether to continue this blog with accounts of my journey, or to write about other things. you see, in your shoes, i'd be starting to tire of reading about the trials and tribulations of one person, no matter how good a friend he is. well, it just goes to show what kind of friend i am.

however, i have decided, as the title of this post states, to stay the course, based on your comments in this blog, on emailed messages, and on conversations with friends.

i started this blog for simple reasons. there were some things i wanted to say to cris and my children and i thought writing them down was the best way to get them across. gathering everyone for a meeting is difficult because often everyone is not in the frame of mind to listen. and i don't like repeating myself, so i figured if i wrote my thoughts down, each one could read them when they were best disposed to. writing gave me an opportunity to review my words before i release them; to make sure i'm saying what i really mean to say.

i also wanted to let some close friends know what was happening to me. i didn't want to have to discuss my condition with everyone who sincerely wanted a truthful answer to 'how are you?' i can simply say, 'read my blog if you really want to know. if not, i'm good.'

i could have a record of what i said to remind myself of the things i'm going through. i don't want to forget my cancer. i have this disease, malfunction, malignancy, whatever, in my body, and i don't want to ever deny it. this is also the reason i usually wear my red Carewell Community band. it reminds me of my mortality, and helps to keep me less arrogant than i usually am. (i'm working or eliminating the arrogance. honest!)

i didn't intend it to be an apologia on my way of life, nor an exposè of my dreams and frustrations in life, nor an inspirational tract on relationships with God. i never dreamed i would be telling you about my conversations with God. but it has metamorphosed from a simple memo to something way beyond my objectives.

it's no longer just about me, but about us, friends in a journey of life. without meaning to, i have drawn you closer to me; and you have responded with your companionship. before i forget, a heartfelt 'thank you' to all.

i write the blog but you help shape what comes out with your comments, your private emails about what i write, and what you tell me personally. this makes the blog much more interesting and meaningful to all of us. for we each have our own journeys thru life.

this blog is about my journey given my condition. sometimes, the journey is a financial one, basically from a point of want, to a point of satisfaction or beyond. other times, the journey is from a life lacking in meaning to one of fulfillment. again, there are journeys from personal acquisition to a generous sharing of one's life. often, it is a combination of all of these. we travel several pathways simultaneously, but thru this blog our paths meet; for a time they become one, then they head off in different directions again. our paths will converge again and again as long as we remain in touch.

as we journey, we experience our own difficulties, our own struggles. at journey's end, sometimes, if we're good, worked hard, and are blessed, we find ourselves in the destinations we set out when we started. more often, we fall short of our destinations no matter how hard we tried, how much desire we put into our efforts. we may fall short, but we do not fail. the journey itself is the essence of our lives, not the end. therefore, take pleasure in it, no matter your circumstances.

let me now provide you with a medical update. however much you enjoy my messages in this blog, a lot of you still read it just to keep tabs on my health. considering my last update was about 21 days ago, i should let you know how i'm doing.

i left you with the news that my mri indicated osseous metastasis in my clavicle and right arm. i was supposed to see my onco the following week, but i didn't. that was my dark period of fear, despair, and self-pity. but after that scolding from God, i felt much better and told you so. that should really have satisfied you, but you're looking for medical evidence about my wellness. well, ness, i'm well. goodness.

i did see the onco last week on a wednesday, and among his first words were, 'i didn't think you'd be coming back to see me,' which got some chuckles all around. but i quickly came down to business and told him that i would like to continue seeing him for medical tests. the ct scans, the mri's, the whatever that would provide scientific indicators about my medical state. but, i stressed, i had decided against accepting any traditional western medical treatment. no sutent, no nexavar, no interferone. i confessed i was using an alt med treatment and taking food supplements.

he had such a sorrowful look on his face, i wanted to hold him in my arms and comfort him. he said that if that's my decision, he'd go along with it. he said there were numerous cases of people with cancer walking around hale and hearty, and you wonder how they get by without any treatment. at that point, i felt like shouting, 'hey, doc. i have a treatment, only it doesn't involve sutent! didn't you hear what i said?' because apparently for him, an alt med treatment is no treatment at all.

anyway, he promised to consult with the radiology doctor about my mri scans because it's hard to conclude with the indicators they have. the dark color in my clavicle and right arm could be osseous metastasis. or, it could be osteoporosis (as my alt med guide told me it was). or, it could be arthrities, or something else. after he had a chance to speak with the radiology doctor, he would have a better idea. so we promised to get back to him, this week, which we didn't. i got very busy on monday and on wednesday, his 2 clinic days. we're freeing our schedule to see him on monday.

so far, i think i'm doing pretty well. the diarrhea has stopped, i'm eating well, except on those days when i have to go out and can't take my regular meals on time. the unwanted result is that i have lost another 2 pounds, and i'm down to about 165 lbs. i wanted to be at 175. and the 36”-waist pants i purchased a few weeks back are now a bit loose for me.

but not to worry, please. my appetite is still good. but i'm really having a difficult time eating a lot, what with all the supplements and glasses of water i have to drink everyday. that fills me up and i don't feel like eating much. however, cris and the children have been baking much better whole wheat bread and i often snack on that with cottage cheese or the delicious original kesong puti that manny provided for me. i'm eating more saba bananas, which are the best because they're chock full of potassium. i'm drinking more fresh apple juice. i'm eating well.

i also had a minor problem with my digestive enzymes because i'm missing at least 1 serving of my raw pork pancreas (rpp) 2 – 3 days out of every week. dr jimmy, my alt med guide, told me i shouldn't let that happen. so he made me buy some pancreatic capsules that i can take when i'm out and can't eat the rpp. i have to take 12 caps for every serving i miss, which goes to show how potent the rpp is. anyway, at almost p28/cap, each rpp serving is worth about p333.33. and i have to have 7 servings a day! i've resolved not to miss another rpp serving. i'll just keep the pancreatic caps for 'just in case'.

i told you i wanted to take up some weight lifting, but my onco said no, my orthopedic surgeon said no, and my alt med guide said no. my younger children tho have helped me rediscover the joys and benefits of swimming. the other sunday, out of the blue, anne said she wanted to go swimming. naturally, the twins piped in too. so they decided they would go that afternoon to the camp aguinaldo officers' club swimming pool. sunday's my real rest day (truth to tell, everyday is a rest day for me.), and i didn't want to join them. but i said, 'what the... i keep saying i need to exercise, so go!' and i did.

we spent a great 2 hours in the pool. i was able to do 4 laps of breaststroke and 4 of freestyle, until i decided that was enough. then, i watched the twins and mikey race the length of the pool back and forth. mikey won, but jerome almost beat him on the 1st leg, and jeremiah almost caught up with him on the return lap. anne too was able to swim the length of the pool all by herself.

we've been back once on a thursday after school, and i went by myself last friday. i did 14 laps, 8 of breaststroke and 6 of freestyle. i'm also checking mikey's bike to make sure everything works well, so i can do biking also. so, i'm good with exercising.

i'd like to report that it's been 3 months since my operation on apr 22, when my cancer was spotted. i still feel fine. i continue to do most of what i used to do before my operation, except that i rest more now. don't spread it around, but my resting is more from choice than from necessity. tamad talaga ako. thanks for your prayers. please continue with them. i really believe they're what's keeping me alive and well.

a new minor problem is my eyesight. it has deteriorated considerably. but make no mistake, i can see well enough to drive though i drive my friends crazy when i put on my shades to drive at night. i do it cause i have sharper vision with them on and the bright headlights don't bother me much. my theory is that the shades force my pupils to dilate to take in more light, so i see better. those of you who know better, don't correct me. better i don't know. i love looking cool with shades at night.

i went to see an opthalmologist about it. i was diagnosed with slight cataract. expected, because it runs in the family. actually, the term he used was 'thin' cataracts in both eyes. not too bad yet. as to my blurred vision, he said my right eye is a lazy eye (amblyopia). it means my brain is not receiving all the info my eye sees; something awry with the connection.

anyway, the optha says the operation is an out-patient operation, 1 hour at most. he suggested we start with my right eye. when i asked if it would remedy my blurred vision, he said it wouldn't. so i suggested that we start with my left eye if it would help me see better more quickly. and he said, it wouldn't help either since the cataract isn't that bad, so there would really be minimum improvement, but we should have the operations as soon as possible anyway. oh, okkkkayyyy.

my next question was how much the operations would cost. he said not to worry about that cause it would be covered by my health card i would only have to pay for the lenses they would implant in my eyes. the cost of each lens (isn't the singular for this, 'len'?) would vary from a low of p1,500 to a high of p15,000. of course, he wouldn't recommend the cheaper models, which is what they use in medical missions for the poor, because they're not reliable and tend to break down after a year or two. better to stick to the higher end models, starting from p12,000 up. what about in the p10,000 price range? oh, yes, there are available lenses in that range which are still pretty good, but the p12,000 ones are much better.

he explained the procedure of the operations and what i would have to do to ready myself for them - approval of my cardio, biometric testing of my eyes. i went home after that convinced that i should have the operations. in the comfort of home, i began to think. if the operations aren't really going to improve my eyesight because i have amblyopia anyway, why should i have the operations? oh, because i don't have to pay for them. the hmo will do that. i only have to pay for the two p12,000 lenses.

we (when i use this pronoun, it means cris and i) decided to seek a second opinion from an optha friend. he confirmed the diagnosis of mild cataract and amblyopia, but he didn't recommend operations. i asked about medications, and he said since my diet is full of antioxidants and vitamins, there's nothing more he can add. he also said there are no eye exercises for my condition. he recommended another test to find out the extent of my eye problem.

so why didn't the second optha recommend the operations? 3 possible reasons: 1) he's not on hmo, 2) he's a family friend, and 3) he's simply a better doctor who takes good care of his patients. or in his case, all three.

my lesson learned is to always get a second opinion, or even a third, or fourth. when to stop? when you're convinced the doctor is sincere and looks at you as person who needs medical help instead of simply a source of his income.

oh, you'll want to know if i've had any further conversations with God. well, given the berating i received, i wasn't too eager to seek Him out again, but i did visit the Blessed Sacrament again a week after our last talk. well, He didn't tell me to run for president of the phils like He did some people. He didn't tell me the next winning lotto combination either so forget about getting a share of any winnings from me.

after i sat down in my usual place, and declared myself ready to receive His word, but not without some trepidation, He said, 'just sit down there and let me comfort you.' nothing earth-shaking, mind-bending, or heart-stopping. just a few words of solace. i felt so good. i did as i was told, basked in His presence, and rested.

so, that's still life with benjie, and you, sharing our journeys.