The Book Cooks
DIARY 24: TROUBLE ON MY MIND
January 12 to March 13, 2009
This cancer war diary entry has been the most difficult to write, and it may be the most difficult for some of you to read. I caution anyone that the details and admissions I make herein may be hard to accept.
I returned from teaching in the Midwest on December 12, 2008, filled with satisfaction for the work I had done while an artist-in-residence at the University of Wisconsin–Madison. I was also very happy and excited to be returning home to New York City. The day after I returned, I plunged into massive rehearsals with the Green Monster big band, a new large ensemble I had assembled, to do a new recording of my extended big band compositions, a project I am calling The Celestial Green Monster. As I explained to the twenty musicians at the beginning of our first rehearsal, I am uncertain whether I’ll live or die from this cancer war, but I wanted to be together with my favorite musicians and record again with them. Since there are a number of them, a big band project seemed a good way to do this.
Because I believe so strongly in the necessity of rehearsal, we worked for three days straight and knocked out the project in less than seven hours in the recording studio, with a lunch break of fabulous food catered by my dear friend Paget Walker and assisted by Christina Hilo.
During the holidays, I visited my family outside Washington DC, while taking the Amtrak Acela regularly to New York for a myriad of doctors’ visits and tests.
In early January, after a renal exam, my urologist, Dr. Sovrin Shah, informed me that my left kidney had pretty much ceased to function (still alive but only working at 11 percent of functioning, with my right kidney doing 89 percent of the work). The left kidney had been poisoned by the accumulated treatments I have had, especially chemo and radiation. This was not good news, but I can still live and function with only one (the right) kidney – another physical loss to the growing list of losses I am encountering. Dr. Shah suggested I have the stent in the left kidney ureter be removed to prevent possible future infection when I have the surgery for the new tumor that was found at the December 8, 2008, colonoscopy.
But on January 12, 2009, a new complication began that has plagued me and confounded my medical team. A terrible exhaustion and fatigue has immobilized me. Since that time, I have had little energy, barely able to function at the most basic level, often sleeping from twelve to sixteen hours a day. I went into a meeting with Dr. Kozuch, my oncologist, and Dr. Picon, my surgeon, at Beth Israel Medical Center, and I was feeling so badly, my blood pressure astronomically high (160/110), that Dr. Kozuch felt I should be sent to the emergency room. EMS arrived and wheeled me there, and after half a day of testing, nothing was found and I was sent home. The mystery of this severe and enormous tiredness I feel continues as a mystery, one that I feel needs to be solved, as it took me on a spiral of downward depression, which I will convey shortly.
During this time, the good news I received from my Beth Israel medical team was that this new tumor was not a recurrence of the two previous tumors, but what they call a “new primary,” and from all the tests, small in size, located far from the anastomosis (the resectioning location of the past tumor removal surgeries), very near the edge of my colon and anus. This gave me a big boost of hope, shared with all of you in the last entry.
The Beth Israel doctors encouraged me to get a second opinion. Since I have been living on federal Social Security disability for two years, I now became automatically enrolled in Medicare (the federal government program that pays 80 percent of most medical costs of eligible U.S. citizens over age sixty-five or like myself, unable to work at all, and surviving on the $673 a month of disability payments from the U.S. government). The remaining 20 percent is to be covered by New York State Medicaid. With Medicare, I now became eligible to see most doctors and hospitals throughout the United States, including the much-vaunted Memorial Sloan-Kettering Cancer Center (MSK) whose slogan is “The best cancer care anywhere.”
Before an appointment with any doctor at MSK can be made, they require the entirety of your medical records be sent to them. This was relatively easy, as I had been earnest in keeping my records and notes during the more than two years of this war. I was given an appointment to meet with colorectal surgeon Dr. Jose Guillem for late January 2009.
Initially, I believed the constant debilitating fatigue I faced was from a flu virus of some kind. But after two weeks, I was not getting better. I had very little energy. In the first year of this cancer war, I could expect and look forward to a few weeks of “good” with vigor and energy, which I zealously took advantage of by practicing my sax, composing, reading, writing, exercising, swimming, and enjoying myself. What were once weeks now in early 2009 had turned into days. Those few good days I had I tried to exercise, swim, practice my sax, do a little bit of organizing, and producing. It seemed finding those good days became fewer and interminably farther apart.
I consulted all my doctors. For the most part, my medical numbers seem very good. All the tests seemed to indicate no metastasis, no diabetes danger, generally very good blood pressure numbers (though prone to occasional high swings, but for the most part, pretty good), blood work seemed to indicate no deficiencies, etc. My primary care physician, Dr. Chao Chen, told me that he thought I was just in a bad loop from the massive hammering that I have had over the past two and a half years, without a break. All doctors felt that I have done remarkably well given all that I have faced.
But I still continue to feel awful, tired, and the very life force within me being drained. I felt I was going to die, despite the medical facts to the contrary (i.e., no indication of infection, metastasis, small new tumor, etc.).
For the first time in this brutal cancer war, I was trapped in a vortex of depression, feeling I could not win, that I was getting worse, unable to do anything (from brushing my teeth much less creating music, even unable to type this to all of you). I began to feel suicidal – that giving up and dying would be preferable to living at a minimal existence. I had a hard time thinking I could talk to anyone about these thoughts of despair and hopelessness.
I went to MSK to meet with Dr. Guillem with my sister Florence. MSK is a very impressive facility – the minute you enter, a friendly doorman opens the door and greets you – a Maya Lin-esque designed lobby with stone and waterfall landscapes most floors, waiting areas are vast, comfortable, and replete with nice beverages and snacks. The staff is courteous and very punctual. Dr. Guillem was very prepared and our discussion was very detailed and meticulous. Because I was now eligible for MSK, I decided to transfer my entire treatment and care there. Dr. Guillem confirmed the opinion of the Beth Israel team that I would need a “transanal excision of a rectal mass” whereby the tumor would be excised through my anus, foregoing the need for major surgery like what I had previously. He was also hopeful that the tumor would be superficial at best or, at worst, not deep in its penetration of my bowel lining. He told me the procedure would be a day or two, and we scheduled it for February 19, 2009. I also requested that the left stent be removed, per the opinion of Dr. Shah from Beth Israel urology. He agreed and his assistant got a Dr. Touijer from MSK urology to do this. Dr. Guillem also connected my oncology care to Dr. Zsofia Stadler, whom I met and had detailed discussion of my situation a week later.
I was excited, hopeful, and eager that this surgery seemed to be easy and would not take a long recovery period. Or so I thought.
With sadness, I informed Drs. Kozuch, Picon, and Shah that I was now going to be treated by MSK and thanked them and the entire Beth Israel staff for their professionalism, kindness, and friendship.
During the course of the next month, I would regret transferring at least my urology care to MSK. Since I have vowed not to devote much of my precious little energy to negative situations, suffice it to say, that after enormous efforts by myself and my friends, that the urology physicians and staff of MSK were very disappointing, and after weeks of effort to find satisfaction, including calling upon MSK Patient Representative and Social Work staff, I decided that I no longer had any confidence in these folks and left. I will continue my cancer care with MSK doctors Guillem and Stadler, but my urology care would return to Dr. Shah at Beth Israel.
Just to share the extremity of the contrast in responsiveness, after weeks of trying to get phone calls returned, questions answered, and appointments made, I called Dr. Shah’s office on Tuesday, March 10, at 9:15 am and his assistant, the kind and cheerful Loisita, scheduled me to come in that day for an 11:00 am appointment. Dr. Shah promptly met with me, ordered tests, and set an appointment for a cystoscopy for March 17 at 8:15 am. Whew, what a relief and what a satisfying experience instead of the hassles and what I angrily told the MSK patient rep was the obstructionism I encountered from MSK urology.
The surgery went smoothly on February 19, but new problems manifested immediately.
That day, I was supposed to have two procedures: the excision of the new tumor and what I thought would be the permanent removal of the left kidney stent. Before and after the procedure I never once met or talked with the urology surgeon, who, just as I was about to have the procedure, I learned was not Dr. Touijer, the urologist I had come to believe would supervise my urological care, but Dr. Herr. Instead of a permanent stent removal, I learned just before going under anesthesia that I would have a stent replacement. Postsurgery, I was informed by Ann T. Greene who companioned me during the day and into the evening, that it was reported to her that pus was found around the stent that was replaced. Could the stent have caused an infection that might explain all of the heavy fatigue from which I was suffering for the past five weeks? No one from urology could answer our questions.
Dr. Guillem informed Ann that the surgery was successful, that the tumor was removed with margins (additional tissue surrounding the tumor to make such wandering cancer cells would be extirpated).
Because no adult patient beds could be found for me immediately postsurgery, I was sent to the pediatric ward. The one good thing was that that ward was very quiet. A testament to the superior consideration of MSK, the nurses at least closed my door after they took their tests and administered my medications. I was resting until 3:00 am Friday morning February 20, 2009, when massive incontinence began. I was rushing to the toilet every fifteen minutes with uncontrollable diarrhea. This would continue for hours.
Later the next morning I got to meet my roommate, a teenager who had his leg amputated from cancer in his knee. I apologized to him for the noise I made during the early hours of the morning with my frequent rushes to the toilet, for which I had no control and had several times shat on the floor. I was also lying in my feces. When the night shift nurses got off, they didn’t bother having the morning shift clean and remake my bed.
I hadn’t eaten for forty-eight hours and was famished. MSK gives you a menu, and I have to admit, their food service was very good in quality. I ate breakfast and later an early lunch before Paget Walker came by to accompany me in my discharge. By midmorning, the diarrhea had stopped, and I was now suffering from constipation! I was also in considerable pain, which made walking and sitting in a car seat very difficult.
While waiting for the discharge protocols, I got to talking with the teenager with whom I shared the room. In all my experiences in cancer wards at three hospitals (first, Long Island Jewish; second, with Beth Israel; and now MSK), I have come to recognize that perhaps an even greater danger than the cancer itself is the loneliness, desperation, and despair of the patients. This teenager needed to really talk to someone, and I provided him that someone. He just talked and talked. I realized that everyone has a story, their own cancer war, and they are yearning to tell it, for someone to listen, to understand, and maybe have compassion. Though he had lost his parents, his uncle and aunt, who had children of their own, and as I learned, worked several jobs, were supporting his treatment at the very expensive MSK, paying out of pocket as he had no insurance. I remarked to him that he was fortunate that his uncle and aunt cared enough to be shelling out tens of thousands of dollars for his care. Part of everyone’s cancer war is having someone to talk to. To share your worries, fears, questions, frustrations, and affirmation your humanity.
He was venting to me that the chemo he was taking made drinking anything hard for him because whatever he drank, including water, tasted awful. I told him he had to keep hydrated since our bodies are 70 percent water (as is our planet) and suggested that since he liked and could eat fruits, to find his hydration that way. I gave him my four key fronts in the strategy to fighting cancer, which I wrote about in the first year of the cancer war in this diary: hydration, nutrition, oxygenation, and love. He liked the way I, for the most part, rhymed these points.
When all of the protocols were completed, I had to say good-bye to him. I was very eager to get home, sleep in my own bed, and in my mind, proceed aggressively toward recovery as I had planned to fly to the Bay Area on March 1, 2009, to perform.
It soon became apparent to me how wrong and mistaken I was in my expectations for a speedy full recovery.
At home, I was suffering from alternating constipation and incontinence. I was also in tremendous constant pain. I couldn’t lay on my back due to the pain of my anus touching any surface. I had to lie on my sides. For two weeks, I could only lay in bed or on my sofa-couch, but not sleep. For the next twelve nights, to about 5:30 am, I was constantly going to the toilet. It wasn’t diarrhea, but the frustration of feeling an impending bowel movement, but with considerable difficulty being able to evacuate, and when finally able to do so, releasing small, rabbitlike pellets. I would think that my bowel movement was done, return to lie down, and then feel it coming on again. This cycle would repeat, in a maddening and painful and frustrating repetition throughout the night. Only by midafternoon the next day, from complete exhaustion, would I get three hours of rest, but never full REM sleep. This was hell again.
Sitting in a chair for more than a few minutes was unbearable. On top of the pain, with the sleep deprivation, I could barely expend any mental energy to talk to people, much less even reply to e-mails. I couldn’t figure out anymore how to do daily life tasks such as check my mail, make food, answer, and talk on the phone.
Since January, no longer did I have good weeks or even days, but if I was lucky, simply a few good hours a day, and many days, not even that, maybe a few minutes to answer a couple of e-mails, speak on the phone in short sentences, struggle to pay my bills, or eat something.
I was not getting better. I felt like I was getting worse. I finally came to embrace the two soul-shattering notions: how it could be better to have one’s entire colon removed and live with a colostomy bag and be rid of the pain and constant incontinence and, I must admit, the desire to commit suicide. To not live a life or existence filled with pain and inability to be productive, much less to even handle one’s own life responsibilities. I was laying in my own feces at home, my bed and sofa coach covered in newspapers and padding.
I decided that my hopes and excitement for resuming my activities as a performer could not happen, so I called Tom Buckner, Jayne Cortez, and many others with whom I had made plans to do performances and speaking engagements, that all had to be indefinitely postponed. Everyone was sympathetic, understanding, and actually agreeable. They knew better and accepted more than I could, that I really need to focus upon recovery and getting better. But what was destroying me from within was the intensifying doubt that I may not get better, that the end of my life would be next.
Two weeks after the surgery, in the few good moments I had, I was fighting MSK Urology to simply get either the surgeon on the phone or a face to face meeting to answer my concerns about the pus found on the removed stent and the question of the stent being a cause of infection and my terrible malaise. This ordeal was the epitome of frustration and the cause of anger boiling inside of me, of the highfalutin’ establishment institution and hirelings more concerned with publishing their fancy-ass research papers and high-profile cases than returning a patient’s phone call or listening to their concerns and questions. Whatever energy I had for recovery and healing was being consumed by a volatile and destructive mix of suicidal desires and the desire to unleash myself as a terrorist self-exploding maelstrom against the MSK urology department. I was the perfect recruit for a suicidal bombing against them.
Two weeks following my surgery, I met with Dr. Guillem. Aib Gomez-Delgado was my companion for the entire MSK visit. What transpired would dramatically help me turn the corner and give me clarity and thus, a better focus and direction than anger and frustration. Dr. Guillem had postsurgery explained to Ann Greene, who explained this to me, but given I was foggy from anesthesia, did not hear, much less comprehend the following:
Because of the massive scar tissue inside of me, there was not enough skin tissue in my bowel lining to sew me back up again. The pain and alternating constipation and incontinence was due to this condition.
At last, now I understood! I asked him how long the recovery would take. He said, “Very long.” I then asked, “How long is ‘very long’?” He said, “I don’t know.” I appreciated the candor. I now knew that the hopes and expectations I had of a minor surgery and what I thought would be a quick and easy recovery were not going to be. I now could easily postpone everything I was hoping to do for the first half of 2009. I now knew I needed to rest, recover, and focus on my treatment. I now knew I had to call upon my circle of love (all of you) for help and support during these very long months of pain and difficulties.
For the first time in a month, two nights ago I was able to sleep for eight hours. Today, because I was up all night evacuating my bowels, I can sit by my computer and type this cancer war diary entry.
Dr. Guillem clarified to me that though the recovery would be long and difficult, that I would recover, heal, and get better. Even though the mystery of my intense and obdurate fatigue remains, I am not preoccupied with struggling with MSK Urology and have gone back to Dr. Shah.
But I am different now from this awareness and realization: I know with confidence that I will get better. I am determined to get better. And getting better, I now understand, means putting aside my plans, travels, and the things I was wanting to do, but focus entirely upon rest, recovery, happiness, and more rest. I now know that this is what I need and want to do. Once the body heals, I can exercise again and rebuild my physical being. I can practice again. I can compose again. I can proceed to tick off my bucket list, etc.
Before this latest onslaught began, I was able to complete three important things, which I hope all of you can check out and promote:
I wrote two speeches, “Trouble on My Mind: New Challenges for Afro Asian Ascension” (which would have been presented at two conferences this spring) and “Future Forward: A Vision for Revolution” (which would have been presented at the Labor/Community Strategy Center event in Los Angeles as a discussion about a vision of socialism that should be, in my view, both matriarchal and Luddite). As always, your critical feedback is always welcome.
And my newest book is being published by the University of Minnesota Press, Wicked Theory, Naked Practice: The Fred Ho Reader by Fred Ho, edited by Diane Fujino, foreword by Robin D.G. Kelley, afterword by Bill V. Mullen.
Here is the back cover of the book:
Wicked Theory, Naked Practice is both the remarkable autobiography of writer/saxophonist/activist Fred Ho, as well as an impressive treatise on black musicians and jazz that touches on every possible topic from Cal Massey to current Asian American musicians and the sixties movement. (Yuri Kochiyama)
Fred Ho writes as a revolutionary Asian American artist-activist for whom his music and his politics are inseparable parts of his identity. All his life, he has been seeking to navigate between the Scylla of a Marxist universalism that ignores oppressed nationalities and the Charybdis of a cultural particularism that ignores the urgency of political action. His search has led him to advocate a struggle for matriarchal socialism. This is urgent reading for all serious activists. (Immanuel Wallerstein, Yale University)
Fred Ho’s Wicked Theory, Naked Practice is an important work, with critical understanding of the most advanced arts/cultural, political social wave of the last part of the twentieth century and the actuality of a new reality and promise for the twenty-first century, his own errors notwithstanding. (Amiri Baraka)
For more than three decades, Fred Ho has been a radical artist and activist. As a composer and saxophonist, he is famed for creating music that fuses Asian and African traditions. The influence of the black power and black arts movements inspired him to become one of the leading radical Asian American activist-artists. Wicked Theory, Naked Practice is a groundbreaking collection of Ho’s writings, speeches, and interviews.
Fred Ho is a composer, musician, scholar, and activist. He was the first Asian American to receive the Duke Ellington Distinguished Artist Lifetime Achievement Award.
Diane C. Fujino is chairperson and associate professor of Asian American studies at the University of California, Santa Barbara.
Robin D. G. Kelley is professor of American studies and ethnicity at the University of Southern California.
Bill V. Mullen is professor of English and director of American studies at Purdue University.
I know I will get better; I know that to get better the difficulties will be painful and hard, but I am determined to confront them because I know I will get better.
© Fred Ho 2011