Yoyo update

the yoyo has gone down again.

this morning, i picked up the reading of the mri i had last thurs. naturally, i was completely at sea by the time i had read 4 words, 'intermedullary enhancing soft tissues...' so, skipping the next 3 sentences, i came to the short and sweet summary: 'osseous metastasis, scapula and humerus'.

i deduced that the cancer had indeed metastasized to my scapula and my right arm (assuming that 'humerus' had nothing to do with my wit).

subsequent surfing found a paper written by doctors in taiwan. skipping the parts that didn't make sense to me, i found the words 'osseous metastasis' connected with 'pain' and 'skeletal debilitation'. quoting further, '...the mean survival time between bone metastasis and death was 5.67 months'. yikes!

after reading the results of the mri, cris and i had a 2-hour wait for our consultation with a top oncologist from singapore, which was arranged by cris' boss. the objective of the consultation was to obtain a 2nd opinion on the diagnosis of my illness.

we had forwarded my medical results to the doctor the previous week, so he had time to familiarize himself with my case. when we were seated, he immediately told us about 'nexavar' and 'sutent' (i hope i got the names right), which he said were the gold standards for treating renal cancer.

his own treatment is entirely different and still controversial, although he had successfully treated some patients with it. it would cost only a little more than half of what nexavar and sutent would cost. however, it would require a monthly visit to his clinic in singapore, for probably the rest of my life. maybe, we should just migrate to singapore or malaysia.

he told me i could try nexavar or sutent first, if i wanted to because they are the more popular and tested medications. he told me to think it over and then, get back to him. i figured that his saying this meant i still had the luxury of time to test the gold standards first, before going for his treatment. remember, i hadn't yet surfed 'osseous metastasis' at that point.

back in the car, i was chuckling to myself. cris asked me what was so funny. i said that before we left, the doctor had told me not to lose hope. i found it funny because even if he had said there was no chance of my being cured, i wouldn't lose hope at all. faith and hope were the only things that kept me going. i couldn't lose either one at all.

so that's life as benjie, yoyo-ing down the road of life.

Up and down like a yoyo

first, i went down with the news that i would need a radical nephrectomy. such a scary term for a terrifying procedure. it meant i needed my kidney removed and would have to function for the rest of my life with just one kidney.

then, i went down some more when the biopsy of the tumor removed with the kidney came up positive for carcinoma.

but the news that surgery successfully took out all the malignant cells in my right kidney region lifted me right up.

yet the results of the bone scan showed traces of metastasized cancer cells in my left lung and possibly my bone structure. what a downer!

then i went to see dr jimmy, my alt med guide, and he confirmed that i had 2 small tumors in my left lung, but my bone structure was free of cancerous cells. although he did say that there were pre-cancerous cells. somehow, he gave me confidence that i could be cured of cancer. i took that with me to the Blessed Sacrament, and the Lord raised my spirits.

when i saw the oncologist in makati med after 2 weeks of the operation, he was very concerned about the cancer cells in my left lung. when i inquired about the findings in my bone structure, he said that these could possibly be explained by arthritis. my spirits fell on his apparent concern about my left lung, but were buoyed by his interpretation of the bone structure findings.

he wanted to aggressively start immunotherapy within a week to treat my left lung. when he told us the cost, i realized there was no way i could afford it, and that depressed me somewhat, though i clung to the Lord's promise that He would be with me.

the onco said he still had to look at my bone scan pix, and i would have to see him within a week. i went back to him on 15 jun, and his focus had changed. he told us that the tumors in my left lung were too small to be verified by a biopsy, and that he was more worried about the findings in my bones. i was confused with his change of focus. however, i found new reason to hope because i felt he was discounting the lung cancer, but was also discouraged that he was now concerned about the findings in my bones.

the onco asked me to have another ct scan, this time focusing on my right arm. i had one and last monday, 22 jun, he looked at the results and consulted with the radiologist. he told me that the ct scan results were inconclusive. even the doctor in radiology recommended that i go through an mri so they can have a finer view of what was in my bones. the fact that the ct scan results were inconclusive, gave my spirits a boost, even if the onco looked a bit disappointed.

so yesterday, i had an mri at makati med to find out with closure (i hope) what it is, or rather, where it is, that ails me.

in the meantime, last monday, i went shopping for new clothes. since i entered the hospital on 16 apr, i had lost 30 lbs, bringing my weight to 170. that frightened me, but cris said, how could i gain weight with the diet i had consisting of veggies and brown rice? anyway, last week i had gained 5 lbs, and i felt good about myself. i decided i didn't want to look like a walking clothes hanger any longer.

i went to sm makati and bought me 4 pairs of pants, but didn't see any shirts i liked. 3 of my pants have 36-in waists. my jeans has a 34-inch waist. physically, i look almost as i did 25 years ago.

during our vacation in la union, i took in as much sun as i could, so my color has deepened and gone back to my dark brown complexion. gone is the hospital pallid pallor. i went to our hairdresser and got a good haircut. as a friend commented, a haircut with attitude. i've taken to using different types of hats and going around with my shades. i am going to enjoy this while it lasts!

that's life as benjie these days, as a yoyo, though a better looking one than the prior version.

Healing prayers

since i started this blog in april, i've been asking prayers for myself. belatedly, i have woken up to the fact that i'm not the only one with health problems. i would therefore like to offer a space in this blogsite for the names of people who need healing, their illness, and if possible, the name of the person requesting for the prayers.

you may send me the info via email, ben.santillan@gmail.com, or simply include it in a comment in this blog. i would also request you to inform me when the person no longer needs healing prayers for whatever reason. hopefully, because he/she has recovered fully.

these are the mechanics i can think of right now. we'll refine them as we go along. i've tried to look for something that would enable you to directly input the info yourself, but i haven't found one yet.

to start, i've posted some prayer requests already. thanks and God bless.

Respite

picture this: a long stretch of deserted beach; not a tourist place because it is rocky and has expanses of sea grass growing just below the water surface. it is a summer afternoon too hot for the other bathers yet. the sun beams heat down enough to keep the water to a warm temperature.. the sea is calm, no waves. the air is still, no wind.

i float on the water about a foot above the sand, low enough to feel the grass tickle my back. i have my cool shades on so i can look up at the sky and see the cloud formations hovering a couple of hundred feet above me. the warm water, the hot air, the bright sun, and the quiet surround me in an island of peace. the cries of my 4 younger children building sand fortresses on the beach 20 yards away, are faint but joyful. i am detached, but not alone, which adds to, and does not detract from, the tranquility of the moment.

it was a piece of time i wanted frozen. i could stay in this moment for an eternity. i was filled with a serenity i had not felt for a long time.

motion meant the relentless passing of time, and i wanted so much for it to stop. no more rising and falling of the tides; no more winds to disturb the cloud masses; no more going back to everyday problems; no more aging; no more unwanted cells growing inside me; no more dying. let this moment just be, and be, and be.

i guess this is what yogis in yoga postures, zen buddhists in meditation, and religious mystics in intense prayer, sought to achieve. when you are able to shut motion down, your reward is peace and serenity.

but as i continued to gaze at the clouds, i realized that the shapes i thought were fixed and stable, were actually full of motion. tufts of clouds in the cloud formations, espcially at the edges, were pushed to and fro by gentle puffs of air. they would move a few feet up or down, left or right, then move back to, approximately, their original places; never in the exact same position, yet very close, so that the whole formation though constantly in motion, only imperceptibly changed its shape. thus, a lion's head slowly became a turtle. a woman's head changed, without noticeably doing so, into a cartoon car.

under me, the sea moved, gently lifting me up and setting me down much as the chest of a sleeping baby will rise and fall. at my back, the leaves of the undersea grass danced to and fro.

inside me, my stomach quietly rumbled, its acids digesting bits of food in my intestines. my heart was beating and i could almost imagine the blood coursing through my veins.

everything above me, below me, around me, and in me, was in motion. the entire universe itself of stars, planets, black holes, and cosmic dust was moving. life in motion! life IS motion!

the turbulance of the wind; the rising and crashing of the waves; the racing torrents of blood in my veins; the struggle of new cells in my body to be created and the destruction of old cells; the mad rush of cosmic objects in the universe away from its center; all were powerful, ceaseless forces in motion. life was not peaceful; it was chaotic.

the stability of the clouds above me; the motionlessness of the water; the stillness of my mind and body; all were simply illusions, a temporary respite. total motionlessness only comes with death. in life, peace and serenity were enjoyed when one made sense of the chaos; when motion and its effects were slowed to a minimum.

a life is not defined by the number of parties one is invited to, or how many toys one accumulates, or how may friends one acquires. that way lies chaos. a life is defined by what is inside a person, which he gains from his lessons in life, and which he nurtures and develops in peace and serenity, with the guidance of his God. peace and serenity are needed to eliminate the effects of chaos. the guidance of God is a reminder of one's unity with creation. and for what he has nurtured to bear fruit for the good of all, it must be shared.

my mistake has been in not sharing because i distrusted the wisdom and goodness of people. people, i now realize, can pick the pearls from among the garbage, the grain from the chaff. there is always something for someone, for what is garbage to one, may be a jewel to another. it is not for me to filter what i want people to see in me. it is for me to simply be who i am.

My selected treatment

the treatment method i have selected to rid myself of my cancer is based on dr william d kelley's metabolic cure for cancer. dr kelley wrote two books about his cancer cure, “one answer to cancer” and “cancer: curing the incurable without surgery, chemotherapy, or radiation”. 

dr kelley was a cancer survivor for 43 years, after treating himself for pancreatic cancer. he died in 2005, of a heart attack. he, and his metabolic cure, were never accepted in the medical profession, probably because he never toed the official medical line for cancer, and also because he wasn't a medical doctor. he was a dentist. but during his career as an alternative medicine practitioner treating cancer patients, he had 33,000 well-documented cases, with a 97% cure rate, 93% after a patient had been treated through surgery, radiology, or chemotherapy. 

the sloan-kettering center in new york spent 5 years reviewing his cases, though the report of their conclusions was never published. one doctor involved in the investigations, dr nicholas gonzalez, resigned from sloan-kettering after the report was suppressed, and opened up his own alternative med clinic in new york, basing his treatments on the metabolic cure of dr kelley.
if you're interested in obtaining more information about dr kelley and his metabolic cure (which incidentally, he applied to both cancer and diabetes patients), you can visit the following sites.

http://educate-yourself.org/cancer/kellymetabolicdiet13dec02.shtml

http://www.drkelley.com/what_is_cancer.htm 

http://cancertutor.com/Cancer/Metabolic.html

my guide in following the metabolic protocol is jaime dy-liacco. jimmy, a vigorous man in his 80's, is also a cancer survivor of 15 years. he cured himself of pancreatic cancer using dr kelley's metabolic cure. you can read about his 'adam and eve' diet in the site below.

http://www.myhomespa.ph/articles/jdyliacco_adam&evediet.html

for the sake of balanced reporting, i have to add the following link about quacks in the medical profession. drs kelley and gonzalez are mentioned.

http://www.quackwatch.com/01QuackeryRelatedTopics/cancer.html

the most informative site i have found about dr kelley's metabolic cure, is at the url included below. it is written by a traditional western doctor in a critique for doctors, using medical terms and medical data. if there is one site i recommend to understand dr kelley's metabolic protocol, it is this site.

http://www.townsendletter.com/June2003/kelleycritique0603.htm

i've researched my condition in orthodox medicine sites on the web and came up with this site, among many others.

http://cancer.about.com/od/kidneycancerrenalcell/a/rcc.htm

ernie e, my former high-school classmate and now a doctor in texas, sent me a few items too, one of which was very informative.

http://www.cochrane.org/reviews/en/ab006017.html

i have learned that renal cancer does not respond well to radiation or chemotherapy. the first line of treatment is medication, more specifically immunotherapy (i think it's called). it is supposed to strengthen the patient's immune system and to arrest the growth of cancer cells, thus the medicines are also known as 'inhibitors'. i read that the medications, on the average, statistically speaking, prolong a patient's life from 7.3 months to 10.9 months.

the reactions of family and friends to my decision to go with alt med have been varied.

a few have expressed their disagreement and even disappointment, with my choice of alt med. they find it difficult to believe that a seemingly intelligent person (that's me) could cast aside science and strictly-controlled clinical studies in the field of medicine.

and in exchange, i place my health and my very life in the hands of untrained laymen, using untested procedures, with uneven results.

many people with cancer have been cured with orthodox medicine. but it has also failed to help others. similarly, alternative medicine works with some people; but others do not respond to it.
in the majority of reactions i have received, i sense incredulity, but the people are too nice to say so. generally, they take into account my faith in my Maker. they hardly know what to say, but instead offer me their prayers. for which i am thankful beyond words. i suspect that a lot of them secretly pray that my eyes be opened, my mind be enlightened, and my decision be reversed. their prayers are still welcome.

however, there are an adventurous few, who some may call foolish, who openly express their support for my decision. some of them really believe in alt med and its effectiveness; some have no thoughts about it one way or another, but defer to my right to make my own decisions; some truly believe that God is at work in and with me.

of all of these reactions, the one i value most is the last, that of those who believe in God's love, wisdom, and benevolence. for though i call it 'my' decision, it wouldn't be the decision i make if i did not believe that God supports that decision. in my acceptance blog post (may 8), i said that God is the Healer, alternative medicine or orthodox medicine are simply His instruments. i have to say that my faith in the instruments, is less than in Him who wields the instruments.

i am deeply grateful to all who have shared their thoughts, experiences, and knowledge with me, and continue to do so. for my part, i will continue to listen and weigh all that you say, for you too may be instruments of the Lord. i could have misunderstood the message God spoke to me. if so, i believe that my God, who is loving and wise and just, would correct me. i must remain open to His messages which may come from anyone.

i thank you for your prayers. to those rare few who claim not to know how to pray or who do not believe in my God, send me your good vibrations instead. that will suffice. my God is wise and loving. He will know what you mean and accept your prayers which you make in your own manner.

last thursday, we paid our second visit to the oncologist. after looking at my bone scan pictures, which i've posted in my picasa web album (for those who have been invited to it, the very long, but extremely thin thingee in the region of my pelvis ISN'T my penis. it's the catheter!), the doctor said that he's now more concerned with the dark traces showing in my right upper arm and elbow joint, rather than the traces in my left lung. apparently, the traces in the lung are too faint to base any firm decisions on, but those in my bones are so prominent as to merit further investigation,

i explained that i used to play a lot of tennis. in fact, there was a time i wanted to be a tennis bum. not in the sense of playing in the professional tennis circuit, but at least in local open tournaments. this was in the early 80's, after i returned from my 5-year bumming sabbatical in europe. i was living with my mom in vigan, and didn't want to do anything but play tennis and lie in the beach.

the only reason i went back to work as a contractual programmer was because i needed to buy tennis rackets, tennis balls, tennis shoes, and pay for tennis bets. unfortunately, once i started working, i had to give up tennis. isn't that grandly LOGICAL!?

back to my illness. that was a long time ago, but the past year or so, i've been complaining about pain in my shoulder joints and my right elbow when i drive, esp our manual transmission vehicle. so, now apparently, cancer may have been the cause of the pain? maybe not.

the onco has scheduled me for another ct scan, this time concentrating on my bone structure. but first, i have to have my creatinine level tested.

cris' new boss, who has been very supportive throughout my latest health trials, has arranged for us to have a 2nd-opinion consultation with dr ang peng tiam, medical director and senior consultant of the parkway cancer centre of singapore. cris sent him my medical test results, which he has perused. i now have the chance to consult with a world-class oncologist. i hope that will assuage the apprehension of those who worry about my choice of alt med. (gawrsh! i'm on a roll here. first, 'peruse'; now 'assuage'.)

another hs friend, dr liz, tells me that ct scans are not good indicators of cancer. she strongly recommends a pet scan. my cousin, laida, suggested the same thing because the pet scan will sniff out and pinpoint the cancer cells in my body, wherever they hide themselves. but my pockets aren't deep enough, so i'll still keep it under serious advicement for now. meanwhile, i'll just have to stick to my pet koi fish, the cheap kind.

on the other hand, my alternative medicine physician told me my cancer was in my left lung, and no traces of it in my bones. so there.

for those who ask cris, or themselves, (but seldom ask me directly) how i am? the answer, my good friend bitan, is 'i'm fine.' that means i'm alive; i am enjoying my life, my family, and my friends; and i am serving God. how can i be any 'finer'?

my wife recently told me i'm a good patient, very conscientious with my diet and my medications. she also considers me a true believer and follower of the Lord. she said that she expects me to be there at our 6-year old daughter's debut. if there's one thing i've learned in this life, it's that it's very dangerous to disappoint one's wife. and so i will do everything to dance the first waltz with my daughter at her debut.

and that's life as benjie, in this year of living dangerously.

Selecting a cure

once people learned i had cancer, family and friends came forward to offer assistance by pointing cris and i to several doctors, oncologists, and alternative medicine practitioners. i realized i had to think of how i would like to be treated.

although the natural choice would normally be western medicine with its scientific and technological developments over the years, i have been a follower and believer of alternative medicine for a long time. the idea of natural remedies has always appealed to me. maybe it's because of my being a filipino, with all our herbolarios, hilots and faith-healers. i grew up in the province where these were the healers of first choice, because doctors educated in western medicine were not always available or were beyond the financial capability of barrio people.

besides, western medicine despite all its well-funded research and scientific clinical tests, has a 'hit or miss' element in its treatments. it is not uncommon for doctors to prescribe a drug for a malady, and when it doesn't work on a patient, to move on to the next drug, and then, move on again, until the right one is found.

even the more expensive, modern machines are not 100% accurate or effective. doctors admit that radiology and chemotherapy affects not only cancer cells, but good cells as well. they have side effects which are managed with more drugs, which in turn also have other side effects.

the western medications and treatments work for some people, but not for others. on the patients that respond well to the therapy, the healing is sometimes partial or temporary. i believe this is because different people will react to these medications and treatments in different ways. after all, each of us is unique in our physiology and chemical compositions.

defenders of western medicine will say that these “gold standard” therapies are backed with years of extensive research and development, and have undergone strictly controlled tests in order to ensure their safety and effectiveness. they can quote medical statistics to prove each treatment’s effectiveness. yet, there are adverse effects. yet, healing is not assured.

at this point in my journey, i have chosen the alternative medicine route. i can imagine my traditional (read, western medine) doctor-friends moaning and groaning, and saying what a great mistake i am making. i am playing with my health and my life. i am delaying the application of medications and treatments that could save my life.

bear with me while i explain my decision.

why choose alternative medicine, which is fraught with hocus-pocus, quacks, and frauds? because sometimes real healers can be found among them.

but they have no scientific data to back them up; no strict clinical tests done on their treatments. of what use are scientific data or clinical test results to me, if i have no assurance of being cured? uncertainty exists in both western and alternative medicine.

while it is true that alternative medicine have no empirical data to back it up, there are living, breathing people who have been cured with it. like a doctor of mine said, 'how can you argue with success?' well, some successes exist anyway.

but why alternative? because, as i've said, i'm partial to 'natural', as opposed to synthetically produced drugs that are based on natural elements.

i have heard several alternative medicine explanations of cancer. different treatments based on natural healing abound. how do i separate the grain from the chaff? i listen and try to go with what sounds the most logical to me.

how can i trust my own uneducated, unscientific assessment of a similarly wide variety of alternative medicine therapies? because in the end, i am responsible for myself. it is my life (and to be macabre about it, my death) and no one else’s. am i forgetting cris and my children? no, i am not, but i have to live my life, as they do theirs, and i also believe i am making the best choice that will allow me to share a fuller longer life with them. we all make our choices. some will be good, most will not be so good. i have made some unbelievably bad choices in my life! but i have always been prepared to pay the price for them, as i am doing now.

but the thing that leads me most to alternative medicine is my desire to be an active participant in my healing process, rather than a passive patient. with western medicine, i am given medications and treated by a physician, who is expected to heal me. in the alternative medicine approach i choose, i am my own healer, and my physician is my guide.

this may seem like a good cut-out mechanism for my alternative medicine coach. if i am not cured, it's my fault, not his, for not following instructions, for not sticking to my prescribed diet, for not religiously taking my food supplements, for not exercising properly. if the western-trained doctor does not heal me, hey! it's not my fault. he failed in his job.

but i prefer taking the responsibility for my well-being and cure on my shoulders, rather than on letting someone else bear the weight of all that responsibility.

cris is concerned about the tone of finality in my decision. would i change my mind if alternative medicine doesn't work? would i be willing to go the other route? like they said, 'it ain't over til the fat lady sings', and right now, there ain't any fat lady around to sing.

sure, i'm willing to explore, to listen, to weigh and to judge. but i have put down the guidelines i would like to base my decisions on. these are things i believe define the values i live by. and if we don't live by the values we choose in life, what are we but slaves to circumstances?

would i trade my good looks, ie hair, strong-looking physique, for a few more months of life under chemotherapy? would i prefer to be alive but weak and helpless in my bed? would i be able to stand the looks of fear and pity in the eyes of cris, my children and my friends when i am wasted and unable to function properly?

difficult questions to answer unless you're face to face with death. yesterday, i met an old classmate from la salle, chito jaraiz. he has cancer too. and he told me, 'we are the fortunate ones, benj. we know that we will soon be gone and can prepare for it. the others have no prior warning, and that could be more dangerous.' indeed, bro.

i have one last, over-riding reason for staying on my chosen path. on the day after i consulted with the alternative medicine practitioner whom i had already selected to be my guide, i decided to lift up my decision to God. i went to mass and stayed with the Blessed Sacrament for some time. i had made several decisions in the past without consulting the Lord. some of them turned out to be good decisions, some, bad. but even with the good decisions, without the Lord's blessing, the uncertainty would weigh heavily on me. this time, i needed His guidance. i could do without so much uncertainty.

i asked Him my questions; i prayed; and then, as i usually do in front of the Blessed Sacrament, i kept quiet, and listened, and prepared myself to wait. His answer came immediately and with such force, that i could not question His response . His words to me were, “Western or alternative medicine, makes no difference. Either one can make you well. What is important is My presence. I am the Healer.”

and that's life as benjie, with God.

Stand by me

gilbert jose, a friend from long ago, shared a link to a great song. this song has great resonance for me. i hope it touches you too. we all need to stand by each other.

http://vimeo.com/moogaloop.swf?clip_id=2539741

it might take awhile to load on your computer. have patience. you will be rewarded.