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.

Acceptance

you know that phenomenon where you hear a song once, and can't stop singing or humming it for days afterwards? that was what happened when my doctors, dr ferrer and dr nazareth, left my bedside the day before i was released. dr nazareth's parting words kept ringing in my head for days, 'shop around for an oncologist.'
usually, you shop around for an appliance, a tv set or a ref, that will last 3-5 years. you shop around for a car that will last 5-10 years. or, you shop around for a house that will last, well, hopefully, for your lifetime. and that was what 'shopping around for an oncologist' sounded like. get one that you can live with for the rest of your life. it sure sounded like getting married all over again.
still, i was upbeat when i left the hospital. i could urinate without blood or pain. my wound was healing pretty well. my blood sugar count, though on the high side, was within acceptable norms. and i was going home!
the next days at home were spent monitoring my blood sugar count, 4 times a day, later down to twice a day. i learned to eat within my prescribed diet; no salt, no sugar, no fat, no oil. to do this, we had to plan the way meat and vegetables would be cooked, and the condiments and herbs to use in preparing my meals. cris had to dress my wound every other day, while i basically lay in bed and rested.
on the weekend, i was looking forward to going back to dr ferrer and dr nazareth the next monday, for my check-up. they would also have the biopsy report (formally, the surgical pathology consultation report) on the mass that was removed from my kidney. dr nazareth's suggestion of looking for an oncologist was based not only on the 10cm size of the mass, but also on the findings of 'occult' traces of malignant cells in my body from the bone scan. i needed to hear conclusive findings. the term, 'occult' or 'microscopic', was giving me some small hope of being cancer-free. the biosy would tell me whether i was living on false hope or not.
but before monday, i decided to surf the net to try to get some info about what was ailing me. i found that blood in the urine meant something wrong with the kidney; that this could mean a mass in the kidney, normally malignant; that a 10cm mass meant at least stage-3 cancer; that what i had was renal cancer. then the usual treatments, medication, radiology, chemotherapy. i got really scared, then figured, 'wait for the biopsy report before starting to worry big time.'
i actually got my first warning about my condition from marlo, my brother. cony, his wife, a neurosurgeon, had told him before my operation that my symptoms were indicative of either kidney or pancreatic cancer. still, i clung to the hope that maybe it wasn't, or that maybe the surgery would remove it.
monday morning, we were supposed to see dr nazareth first to remove the staples from my wound, and to give us the lowdown about the biopsy report. unfortunately, he had an emergency operation in batangas and would only be available in the afternoon.
we went to see dr ferrer. he didn't have the biopsy report and had to send down to the pathology lab for it. he explained that the mass was indeed stage-3 carcinoma. but apparently, it hadn't spread to the adjacent organs or tissues. that lifted my spirits. then, he said we would still need to consult an oncologist because what he knows of cancer could be 10 years behind the times. besides, there was correlation between my kidney problem, the bone scan results, and the pathology report. my spirits took another downward turn. (friends have mentioned a roller coaster ride. i'll have a posting on this soon.)
when we finally saw dr nazareth, he explained that aside from my kidney, he had taken out a portion of the vein connected to my kidney, and a lymph node that seemed to have been affected. however, the biopsy report said that the lymph node was negative for cancer traces. he reiterated his advice to look for an oncologist who would then recommend the best treatment for me.
he told me that we needed to monitor the progress of my kidney. i would have to go for an ultra-sound every 3 months, and a ct scan at least annually, maybe even every 6 months, because the ultra-sound would not be able to give clear indications of a recurrence of the tumor, which was possible.
yesterday, thursday, we visited dr aragon, my endocrinologist, for my sugar monitoring. the blood test i had done on monday showed by sugar level to be at 98.98. when i entered the hospital it was about 180. so things looked good. but again, close monitoring was needed because the 4 things affected by diabetes were the eyes, the heart, the kidney of which i only had one left, hence the need for stricter vigilance, and the foot.
besides, the oncologist might prescribe some medication for chemotherapy that could increase my sugar level, i would really have to consult with him again when i begin my treatments.
in the afternoon, dickie heras, a friend whose wife, yvet, had undergone chemotherapy last year (and who is now doing very well), brought us to carewell community, to meet its founder and managing director, bobit suntay. (http://www.carewellcommunity.org/)
bobit explained what carewell did and how it helps and supports cancer patients. we, or rather cris, my resident would-be-doctor, explained my illness and the results of the different tests i had undergone. bobit then spoke of the different treatments available to cancer patients, from what he called, 'the gold standard' of western medicine, to alternative medicine. western medicine is based on scientific studies and empirical evidence, while eastern or alternative medicine goes by anecdotal experiences of patients who have been healed. there is no clear explanation how or why alternative medicine works, but there are several living, breathing 'proofs' that it works. it would be our decision which of these branches to go with, or what mixture we would work with. personally, i prefer alternative non-invasive medicine, but i'm open to both eastern and western medicine. whatever it takes to get well.
carewell would be there to support us in our journey. bobit mentioned the names of several reliable oncologists we could consult. he also said he could refer us to alternative medicine practitioners, if that is what we choose.
on the way home, i could only think that all the doctors we had spoken to this week, and even bobit suntay, had no doubt about the need for me to consult with an oncologist. no if's or but's about it, i needed an oncologist. and what disturbed me even more, was that they didn't make it sound like a one time consultation. we had to find an oncologist we could work and live with, because this was for the long haul.
last night, we went to a get-together hosted by my close aunt, doña nonette medina. it was her mom's (my lola domi's) 10^th death anniversary, and i think, she and ate aiding, her sister, also took it as an opportunity to fete me for a successful operation.
we spent time talking about our various medical problems because nonette had just had a spinal operation and was still experiencing considerable pain now and then. ed, nonette's husband, has diabetes, no, sorry, very high sugar count, but not diabetes. peping gonzales, my uncle from another lolo, has had several operations on both knees and one on the upper part of his spinal column.
of course, delicious food was served by nonette, as usual. i small portions of everything, except the clams and mussels of which i liberally partook. i even had a taste of the ice cream cake, and of the cheese puff from Conti's. (my fasting blood sugar this morning: 103, which is very good.)
after the meal, lulu gonzales, an aunt from another lolo, who's actually younger than i am, looked over my test results. being a doctor, i was very interested in what she had to say and listened closely to her explanations. before saying a word, just by the look on her face, i could tell she was about to concur with the other doctors about my sickness and my need for an oncologist.
more than any of the other doctors, lulu's words drove home the fact that i am now a cancer patient. full acceptance of that will take some time, i'm sure. this is just the first step. tomorrow, i will wake up and have to accept it again. and the day after, and the day after.
i am a cancer patient. whether i will be a cancer survivor and for how long, depends on me, my oncologist, and my God. i know cris will be always with me in this difficult journey, but so will my close family, my extended family, and my friends.
i do not make this statement of acceptance to solicit pity for me. pity, i can do without. i do it so that when you pray for me, you may know what it is i need in my life at this moment; and that is healing. But beyond that, that we all may accept whatever it is God wills in our lives.
this i promise to you all. i will do whatever needs to be done, eat or drink what i must, and do away with whatever is harmful, to try to fight this disease. i owe it to you who have shown so much concern for me and have given so much support to cris and to me. i owe it to my children. and i owe it to my wife. thank you again. God be with us all.
and that's life as benjie these days.

Good Shepherd sunday

this evening, my entire family and i were fortunate enough to attend a mass celebrated by cardinal rosales. his homily was about john 10:11-18 where Jesus says He is the Good Shepherd. the cardinal pointed out that in our various roles in life, we are all shepherds in one form or another. we are parents, teachers, employers, priests/pastors. he went on to mention the 3 aspects of a good shepherd.

1. the good shepherd knows his flock, and his flock knows him:  the good shepherd takes time and effort to know what his flock needs and expects of him, and he makes himself known to this flock. a parent must take the effort to know his child and his needs. he also makes himself known to his child in all truth and honesty.
2. the good shepherd will do anything and everything for the good of his flock: nothing is too difficult nor too demanding for his flock. he is not a hired hand, so he truly cares for the welfare of his flock. renumeration is not an issue for the good shepherd. being a good shepherd is self-sacrificial love, a total giving of oneself to others.
3. there is no repaying the efforts of the good shepherd:  a child will never be able to repay the love and care of a good parent. a student cannot renumerate a good teacher for his patience, concern, and dedication. the only valid repayment is for the child or student to pass on the good deeds of the good parent or good teacher on to others placed in his care.

as a parent, i kept trying to dodge the verbal blows that came my way as i sat listening to the cardinal.

i try my best to get to know my children, but i haven't really made myself that available to them to give them a chance to get to know me well. when they want to speak to me, i'm busy. when i want to speak to them, they're on to something else.  i realize it's not a question of their freeing themselves up for me, but rather for me to make them my priority in life.

the cardinal spoke of a quotation he tried to live by as a young priest. 'if, at the end of the day, you find sometime to be with yourself, then you haven't fulfilled your role as priest.' boy, that's a tough one. something i can't claim to have done with my children. i've always made sure i had sometime left for me, for i valued my privacy. i kid myself and say it's time to be with God, but it's really time to be with myself. that is time i could have shared with my children.

as for the third aspect of a good shepherd, the cardinal says that not riches, nor cars, nor vacation trips can repay the love of a parent. maybe not, but those could be steps in the right direction. truth to tell though, i have to pray that my children do a better job at parenting than i have.

these days, i seem to be learning something from almost everything that comes my way. maybe it's just a heightened awareness of things around me. whatever, i thank the Lord it's there.

tomorrow, i have a date with my doctors to learn the real score. and to have my staples removed from my wound. so, i'll probably have an update for you again tomorrow night.

Life on the diet lane

i've been home for 5 days now. it's been 5 days of eating, sleeping, and drinking at least 2 liters of water a day. that's to keep flushing out my kidney.

oh, i've also been monitoring my blood sugar count, first 4 times a day, then down to just twice a day. my count varies from about 110 - 120 in the mornings and up to 130 - 175 in the evenings. not great but i'm proud of not taking sugar, just splenda tho not too much of that either. salt too for that matter. if i use it at all, it's about 30 grains of salt for a meal.

so what's life been like on the diet lane? surprisingly, not as bad as i thought it would be. i dreaded living without salt, patis, bagoong, taba ng baboy, bacon, chicharon, chocolates, Sugarhouse Turtle Pie, Aristocrat Crema delos Reyes, and other goodies, but it's turning out to be not that difficult when you're aware of the consequences. for someone who didn't just like salty foods, but needed to taste the salt in every bite, that's saying something.

this evening, we had nilagang baka, which we usually eat with fish bagoong, sauteed in lots of garlic. i asked for the bagoong and just took a big sniff of it. good enough for me. last night, i did the same with the chocolates my children had for desert. i had wedges of dragon fruit, a gift from samantha, a friend of the family.

my meals are usually broth with leafy vegetables and fresh fish or meat w/o the fat, seasoned with onions, ginger, basil, lemon, and pepper. my favorite vegetables are broiled fat tomatoes, large white onions, and bell peppers with basil, oregano, lemon or kalamansi, and pepper.

for my meat, i usually like broiled pork, with the fat trimmed off, chicken with the skin removed before cooking, and beef, with lots of chili sauce or chili flakes. i usually have fish with my soup. the other day, i had sap-sap soup. it was delicious, but difficult to eat because of the small spines. worth it though.

next week, i'll ask for broiled fresh fish. i hope my favorite, hito.  also some broiled squid. i'd love to have crab and shrimps, but i'm allergic to them. not too bad an allergy, just itchiness in my lips. but in my condition, why chance it? i can wait.

my fresh garden salads are seasoned with lemon or with a little balsamic vinegar. as my brother, marlo, pointed out, i should use the other varieties of vinegar we have in the phils. that should add flavor and variety to my salads.

which ties in to an article i was reading yesterday about celebrity chef, ming tsai, of 'east meets west' on the lifestyle network. he was here recently for a visit, and he was surprised at the many kinds of vinegar we have. (http://showbizandstyle.inquirer.net/lifestyle/lifestyle/view/20090429-202195/Ming-Tsai-asks-for-chicken-adobo. unfortunately, this article seems to be an abridged version. the newspaper version had a longer portion on ming tsai's awe at our vinegar varieties.)

all in all, i've enjoyed the food without the salt and the sweets. i'm starting to realize that there's a whole lot of herbs, condiments, and things we can use to flavor our food. salt, patis, and bagoong are great, but they're not the only things we can use for flavoring.

anna j.o. says i can also have leche flan using splenda. must try that soon, but with skimmed milk.

it's been pretty good eating i must say. i've regained my appetite. i think i'm even eating a bit more now, tho healthy foods in controlled portions. i'll have to start light exercises next week if i don't want to regain the 15 pounds i lost.

i started going to mass last thursday. today, i was even able to attend a 2-hour parish pastoral council meeting with cardinal rosales. the pain from my wound didn't bother me as much as i thought it would. i had forgotten to take a pain-killer, but didn't really need it.

tomorrow, cris and i are having dinner with the cardinal in our parish. i don't know what they'll serve, but i don't think i'll partake much of the meal. i'm sure the food will have much of the delicious things forbidden to me, so i'll pass. that's the problem with dieting in the phils. there are so many instances of friends or clients giving meals, it can be embarrasing to turn down the food and explain my illness. have to think of how best to do that.

i'd appreciate any advice about healthy diets from you if you have any. recipes will be very welcome too. to my doctor friends, i won't ask you for medical advice on the sketchy info i'm providing in my blogs, but would like to hear stories and anecdotes about friends or patients in the same situation i'm in. everything you say will be studiously analyzed and referred to my doctors before applying them to me.

to those who are shy about giving your real names, i don't mind if you use aliases. i will probably know who you are by the things you say and the way you say them. besides, what you say may benefit not only me, but others who read my blog.

ps. bob s, it's great to hear from you after all these years. please keep in touch. i've been trying to reach you for so long. regards to alice, and to flora.