CANCER WAR DIARY #30 May 25, 2009 FORWARD HO! Getting Better Day by Day
After about six weeks from the last surgery I had on February 19-20, 2009, my body turned a major corner and it began an accelerated healing. During those six weeks, as detailed in the last Cancer War Diary #29, I had gone to Hell again, faced The Devil, and almost surrendered this war. Though the tumor was a T1 (small, only penetrating the bowel lining halfway), because of the accumulated treatments of multiple surgeries and chemo/radiation bombardment, I had a massive amount of scar tissue that prevented my surgeon, Dr. Guillem, from sewing me back up, and had to heal naturally. With a dozen sleepless nights, tremendous pain, constant bowel movements (as many as 30 times a day, as frequently as every 15 minutes) and extreme tenesmus (explanation below), hammered exhaustion, depression and frustration, I felt that anything would be better than what I was experiencing, which included coming to accept having a permanent colostomy bag if it came to that (a leap of acceptance given how I hated the temporary ileostomy bag I wore for four months last year), and worse, having thoughts of suicide, believing death would be better than the agony.
But I remember exactly when I turned the corner for the better. My kokua, Peggy Choy, had flown to New York from Madison to stay with me and help with chores. That Saturday morning, after only a few hours of sleep, I woke up feeling energized and really wanted to help Peggy with the cleaning of my apartment. So I went out as the stores were opening to find a good wet mop to clean the floors. Only a few days before, it was painful to even walk, much less sit erect in a chair to type on the computer or even read emails of any length. I came back and Peggy was not pleased that I had gone out while she was still sleeping to perform this errand. I complied with her insistence that I lay down and rest. After cleaning the apartment and having a light breakfast we made plans to connect with my friend Joe Russotto in the East Village for an early dinner (I have been eating before 6 pm to try to minimize the number of bowel movements through the night in order not to constantly interrupt sleep and run to the toilet all night).
After Access-a-Ride dropped Peggy and me off, we met Joe, and I was feeling so excited and eager to finally get out of the limited three blocks of my neighborhood that I could barely walk for the past six weeks, that I asked if we could walk around and sight-see. We found a great Italian restaurant and enjoyed a delicious meal. I was very anxious that my bowel movements would be erupting in havoc, but since I had scheduled our Access-a-Ride pick up with about an hour to spare, and the restaurant was packed and needed us to vacate our table after finishing our meal, we cautiously walked around the area. While I felt full, I didn’t feel like I was going to burst, as had been the case after I ate during this awful time.
Access-a-Ride came and we returned to my apartment in Brooklyn. I undressed and immediately went to the toilet. At first, it seemed it would be painful and difficult again to do my bowel movement. But for the first time since the surgery, I was evacuating in steady, vigorous cycles. Because of the multiple colo-rectal surgeries, my bowel tract has been reduced in length by 16 inches, so the movement in the shortened tract now moved in smaller and quicker waves instead of what is for normal people, a continuous single pushing wave.
That evening, sitting on my toilet, for once I was able to completely clear out my colon, and felt for the first time totally relieved! What a joy! I felt an inner confidence that I could finally go to sleep that night without constant interruption and could really get a full, complete, good night’s REM sleep. And I did.
MISSION: IMPOSSIBLE!
The open wound was healing and mending. I was careful and cautious to not get too excited. I had been down that road before, thinking I was on the mend, raising my hopes and expectations, only to be slammed back down with symptoms of a returning cancer tumor. But this time, after postponing all my travel and public engagements for the entirety of 2009, and dedicating myself to the focus of healing, recovery and improvement, I have been uplifted to feel and know that I am on a very good path now. Daily I improve, not just physically, but also in my soul and spirit. I now have accepted what it means to be “off the treadmill” of pursuing career, accumulating income, caring about what the music and art business wants or deems worthy and important; and I have embraced LOVE, of always spending time (a lot of it) with friends, family, and people who want a just, equitable and better society. I am also completely accepting of my MISSION for the remainder of my time of this planet: To Do the Music/Art and Politics that No One Can or Will Do! I have fully committed to what Sun Ra insisted: that since everything has been done and nothing has changed, what is needed is the Impossible. I continue to struggle to eliminate ego, to focus on the future and not the past, to work on doing the impossible.
I was suppose to be dead a year ago. My oncologist, Dr. Zsofia Stadler, admits that my case is very unique and unusual, that I’ve tried all the chemo drugs that western medical science has invented for my stage of colo-rectal cancer, and it has become apparent that none of them have worked; that, as she admitted, you couldn’t find a hundred cases like mine throughout the world to even conduct a reasonable clinic trial; and that I will not be out of a danger for some time, perhaps for my entire life. That I continue to be here, to do what I do, to make the personal transformations and to achieve the internal transcendence that I have, that is doing the Impossible. I realize that the Impossible is a constant work in progress, a process and a journey, never to be fully measured, quantified or completed.
MEET THE NEW FRED HO
As I get older in age, more hammered by the cancer war, and having suffered the many physical losses, the gains I have made in my consciousness, spirit and imagination and vision have made me BETTER. I am convinced of this. That’s why I now always introduce myself as “the New Fred Ho.” I couldn’t have come thru this war without having killed the old Fred Ho, to have fully committed to repelling all the toxicities of capitalist existence (“the treadmill”), to accept the new possibilities no matter how impossible. I continue to fight on.
On the socio-political-cultural level, I am even more dedicated, outspoken and ferocious, but the old Fred Ho, shaking with rage and anger at the system and its accomplices, is gone, and the new Fred Ho is now saturated with a tremendous love for all who contribute by their deeds towards advancing the struggle for liberation.
The old Fred Ho denounced Ludditism. The new Fred Ho IS a luddite (again, not anti-technology, but opposed to technology that is harmful to people and to the planet).
The old Fred Ho would have ego, conceit and exhibit arrogance at indignities, affronts, injustices (both socially and particularly targeted to himself), explode in anger and fulminations at inadequacies and improprieties. The new Fred Ho is highly selective, only chooses to be involved with the vanguard of integrity and excellence, irregardless of stature and mainstream legitimization.
The old Fred Ho was a polemicist. (See WICKED THEORY, NAKED PRACTICE: A FRED HO READER to get a sampling of this!). The new Fred Ho is a philosopher and seeker.
The old Fred Ho was unsatisfied, wanted to achieve more, accomplish more, believing that somehow, thru sheer dint of his determination and tenacity, that the mainstream would accord him something. The new Fred Ho doesn’t care for any of this, and is only focused on his mission.
I believe that one of the carcinogenic factors of “the treadmill” was the pursuit of “success”, often to the detriment of health and happiness (internal peace, without the toxicity of anger as the predominant emotion — anger at injustice and at compromise and complicity with the status quo). The new Fred Ho now understands the distinction between success as “getting what one wants” and happiness (“wanting what one gets”). Competition, envy, anger, covetousness (both overt and covert), ego… the new Fred Ho is on a journey to eliminate all of these toxins.
The only two public engagements that I kept for Spring 2009 were two book signings/performances for the publication of WICKED THEORY, NAKED PRACTICE: A FRED HO READER. The first, held on May 7, took place to a packed attendance at the Asian American Writers Workshop in Koreatown, Manhattan. The second, organized by the great Magdalena Gomez, was at the Holyoke, Massachusetts Barnes & Noble. Both events had terrific turn-outs and sold out of books. A book celebration and cultural event also happened, organized by Peggy Choy, at the Asian American Studies national conference in April in Hawaii, for which it was not possible for me to attend as I was unable to even sit in a chair for more than a few minutes, which prevented me from making a long flight to the Hawaiian nation. Reports are that it went well and books were sold. I have made it a point to sign each book with a unique epigram, to never repeat myself, just as when I improvise on my saxophone, to not repeat myself.
For two events that I had postponed, a conference on American studies at the University of Texas-Austin, and the aforementioned Asian American Studies conference in Hawaii, I had drafted a short speech entitled “Trouble on My Mind: New Challenges for Afro Asian Ascension”. (You can read it at:
http://www.bigredmediainc.com/brmflash/. Click on writings and go to that title).
Because I couldn’t be there in person to deliver this talk, two friends who are professors of Asian American studies read my paper at these respective conferences. The feedback I got from the two friends who are professors of Asian American studies was that some if not most of the attendees (who are professors or aspirant professors of Asian American Studies) objected to my essay. The Texas conferees felt I was too “binary” in my thinking by posing the positions as “authentic” versus “sell-out.” While at Hawaii, the feedback was that my essay was not “nuanced” enough.
For a few days I personally wrestled with this feedback. I realized that I had drafted this piece early this year, prior to the last surgery, and had intended to revise and work on it some more, but the severity of the post-surgical recovery was far worse than I had expected, and precluded me from even sitting in a chair for any length of time to write at the computer. I am fighting to eliminate ego so I was soul-searching to ascertain if my being troubled by this feedback was personal vanity and ego. But after conversations with some of my kokua, especially one who is seeking to rise further in the ranks of academia, I began to recognize that the accusations of “binary thinking” and “lack of nuance” have more to do with the aversion of academics to real struggle (and by extension, accountability and responsibility) about THE STAND one (must) take in the gutting of commitment towards Asian American liberation (and by extension, the liberation of all oppressed peoples for which Queer, Ethnic and Working Class studies were conceived and constructed to primarily support).
I believe that the accusations of my being “binary” is a recrimination of me for taking a stand, and the charge of “not being nuanced” is that I actually carry out and fight for what I stand for. As always, yours or anyone’s direct feedback and commentary to my ideas are always welcome, either by a direct phone call or in person conversation, or via email (tho as a luddite, I refrain from spending more than 5 minutes in email “discourse”).
As the weather gets warmer and the sun rises earlier, I am day by day feeling better about everything. I awake each day after a good night’s sleep, never to go to sleep with anger or anxiety, and to avoid eating after the sun goes down. I eat smaller meals, mostly raw food (fruits, vegetables, fresh squeezed juices, unprocessed nuts, raw fish), though I still remain an omnivore and occasionally eat pork, some chicken and turkey, lower temperature cooked foods. I swim at least twice weekly, do light exercises, and practice the saxophone at least five days a week. I have begun to write music again, just completing a big band arrangement of Jimi Hendrix’s “Fire” and am working on an extended arrangement of Hendrix’s “Purple Haze” which I am reinterpreting. Instead of the common understanding of “Purple Haze” as the stupor and intoxification of drugs, I reinterpret the song to mean the stupor and intoxification of false consciousness, or of the condition of “being in the Matrix.” I’m collaborating with Randy Wolff for this big band arrangement.
One of my immediate projects is to finish this collection of Cancer War Diary entries, to compile them for publication as a book entitled DIARY OF A RADICAL CANCER WARRIOR: FIGHTING CANCER AND CAPITALISM AT THE CELLULAR LEVEL. My intention is to make this an instruction manual and philosophical tract for fighting the twin, interconnected, interrelated plagues of cancer and capitalism (which, as my woodsman friend, Jay Crotchett, has pointed out to me, are the same inextricable processes of accelerative malignant growth). As I get better, I will embark upon more projects and activities to realize my mission. But for 2009, the main goal is to get better. Because of the frequency of tumor growth for me, I will now have bi-annual colonoscopies. I have one scheduled for August 5, 2009 and a later one will occur either in December or January of 2010. I am determined to have these tests come out clear, which will be the first time for the past 3 years. If both are clear, I will proceed into 2010 with a myriad of activity, as the new Fred Ho, free of carcinogenic-generating inducements, and immersed in peace, satisfaction, happiness, fun, mostly raw food, ludditism and love.
Daily I get better, in terms of physical and psychological improvement. Besides the persistent peripheral neuropathy (pain in my extremities, viz., fingers and feet), which diminishes with warmer weather, I continue to have a condition Dr. Stadler has described to me as tenesmus, the feeling of having to move my bowels all the time (brought on by the greatly shortened length of my bowel tract after the multiple surgical resections). I try to evacuate my bowels as thoroughly as I can each time I sit on the toilet, but it never seems that it is thoroughly cleared, so I have this persistent feeling of needing to crap again.
Beginning this summer, one day a week, I plan to work on a farm and in exchange for my free labor, get my food sources directly from what is grown and prepared there, which will include hand-threshed wheat/flour, pork from pigs I slaughter, vegetables, etc. I also plan to swim at least twice a week in the ocean, and begin to plan the launching my own internet television station featuring music, the arts and progressive-radical socio-political ideas.
On May 27, 2009, I was honored by the Brooklyn Borough President’s Office as a notable Asian American resident of Brooklyn during this year’s Asian Pacific Heritage Month celebration. I remember about 30 years ago when then-President Jimmy Carter made the official recognition of the month of May for Asian Pacific Americans, after such ad-hoc, unofficial celebrations had been organized for years prior by our communities, including the Asian Pacific American heritage celebration in New York City and the Asian American Awareness month that I had conceived and initially organized while a student activist during the mid-1970s. The May 27 event was surreal and bizarre with Brooklyn Boro President Marty Markowitz constantly sticking his foot in his mouth, conflating all Asians to be Chinese, noxiously promoting the model minority myth that Asian Americans have made it in America, and for his obvious lack of any basic knowledge of Asian American history. He also was slovenly sucking up to the consular person from the People’s Republic of China, furthering the misimpression that we Asian Americans are either all recent immigrants, foreigners, and again, all Chinese.
The eye-candy hostess, a local TV newscaster of Asian descent, never left the green room, fixated and twittering on her Blackberry, so she misattributed the obvious south Asian youth dance group as Chinese folk dancers. As usual, Asian Americans get token attention, and when there is even that scant attention, clumsily stereotyped and presented with so many sloppy inaccuracies. Such errancies are like the thinking that Africa is a country.
HERE’S FARMER FRED
I have recently begun working once a month for a week on an organic farm in the Delaware County of the Catskills to grow my own food. It is very hard and grueling labor, and given that my strength and stamina is not what it was, I can only work about four hours a day. But breathing the fresh air, getting vitamin D from the sun, working my muscles and enjoying the simple but delicious organic vegetables and fruits is a great joy and learning experience for me. I had several epiphanies while working on the farm. I realize how defrauded we all are by capitalist factory farming and food processing that we are denied the taste of real food, and how good that food can really taste, as well as denied the benefits of greater nutritional density from such food and the way it is grown and gotten to our kitchen tables. I also realize that organic farming without any petrochemical fertilizers or pesticides requires a lot more labor, which is why mass production farming is cheaper, but not better. The greater labor required by organic farming would mean more employment, especially without the hazards of chemical toxicity to either the laborer or to the consumer. Finally, the reduction of consumerism generated by organic farming: less carbon burned by transportation, less packaging, to even fewer pieces of kitchenware as the pure taste of the food requires less involved preparation and consequently less “stuff” in the kitchen.
For our meals, we ate straight from the ground. A pasta sauce was simply olive oil and fresh tomatoes stewed on the stove with no salt and pepper, no garlic, no onions, no cheese. And it tasted delicious. Nearby is Arcadian Farms, run by a Belgian immigrant man named Laurent. I got some fantastic lamb merguez sausage freshly butchered, chorizo pork sausage, lamb ribs and center leg cut. I met the pigs, ducks, chickens, cows and rabbits he raises.
Country farm living isn’t for the squeamish or neat-niks. As my friend Jordan Colon pointed out, there is no separation between indoors and outdoors. We go in and out of the farm house with mud and dirt. The house interior is very simple and rough, a place originally built in 1827 (yes, almost 2 centuries old), probably not cleaned in years. It doesn’t have to be that way, but the 12-14 hours of work per day in the fields doesn’t leave much time or energy to keep a house tidy and cleaned. The water from the faucet is great fresh spring water. A stream runs through the farm land with a nearby waterfall. On the way there is a patch of fresh thyme. By the time we lay down to sleep, we all were exhausted.
I was especially worn out, being the oldest person there by almost 10 years, and having gone thru the cancer war. The sun beat heavily on me, and I had to take a break during mid-day when the sun was hottest. I sweated profusely. I was covered in mud and dirt. Blisters broke out on my left hand. I mostly did weeding, dragging the hoe through rocky but mineral rich soil. I was often on my hands and knees planting saplings of 40 to 50 different varieties of tomato plants, 4 different kinds of basil, kale, a bunch of different kinds of lettuce, cabbage, asparagus, spring onions, scallions, leeks, chives. The farm also has watermelons, cantaloupes, honeydew, strawberries, squash and zucchini, rhubarb and other vegetables I probably don’t know about.
Jordan is the owner of Eat Records restaurant in Greenpoint, one of the best restaurants in New York City because all of the foods is local and organic, mostly all of it from the farm. He has limited refrigeration and only an electric, not gas, stove. So his operation is very small and limited in scale, but not in quality or taste. The profound nature of his space and equipment limitations requires his cooking, particularly the food itself, to be the best and healthiest. You can google search the restaurant and read the reviews. The tables and chairs in the place were made by his older brother, a gifted carpenter. The restaurant shares the space with a used record vendor, so it has a bohemian, but not pretentious faux-hipster, feel. It is one of the great assets of my Greenpoint neighborhood.
A program he and other restaurants and farmers have created, in which I am now participant, is CSA (Community Supported/Service Agriculture). People can place a weekly order and pay $30 and receive a bushel of fresh fruits and vegetables from the farm. They have to go to Eat Records or other NYC sites to pick up their boxes. People can also special order smaller quantities or specific items, such as a quart of tomatoes, instead of the mixed box. If you want to join, please contact Eat Records at 718.389.8083.
The only thing that doesn’t appeal to me about the area of the upper Catskills, and rural life in general, is the small-town mentality and pettiness of the social interactions. There are a growing number of city transplants, but it hasn’t gotten as bad as say Woodstock, which is simply a replication of yuppie-infested Park Slope!
The rest of 2009 for me is to recover and get better, work on the farm, finish the Cancer War diaries and pass the two colonoscopies. I am for the first time very hopeful, truly looking forward to 2010 when the new Fred Ho engages the Impossible!
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As always, I’d like to recognize and thank my loving friends who assisted me during this phase of the ordeal: Paget Walker for constantly coming by to look in on me, transporting me to doctors appointments and grocery shopping; Abraham Gomez-Delgado for taking me to doctor visits and my emotional meeting with a social worker at Memorial Sloan-Kettering where I admitted to my feelings of suicide; Peggy Choy for visiting and doing whatever chore need to be done; her daughter Maya for coming over and cleaning my bathroom; Lisa Yun and Ricardo Laremont for donating some money and treating me to a magnificent Malaysian lunch in Elmhurst; Ann T. Greene for everything she does to help me and keep the Warriors for Fred organized; Gladys Serrano and Tom Buckner for visiting and hanging out. And to my old roommate from my days living in Park Slope, actress Cheryl Lynn Bruce and her husband, the visual artist Kerry Marshall, for making contact again and their generous cash donation.