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Chapter Three: Facing Cancer, Loving Life
Cita’s Cancer Chronology Much of the early history of Cita’s encounter with the dreaded disease is covered by Eric Caruncho in his article. “A Journey Towards Healing” published in the Sunday Inquirer Magazine in April 1992: Cita Soriente Reyes was several months pregnant with her second child when they found the mole. It was hidden under the edge of her right foot, a flat black disk of oddly-pigmented skin, small and seemingly insignificant. (Cita) could not have guessed that it would dramatically alter the course of her life. The doctors had been looking for the source of a mysterious fever that had threatened to abort her pregnancy. “Make sure your doctor sees that after you deliver,” the neurologist who had first seen the mole said. Reyes did not give much thought to it. Many years before, as a community organizer working with peasant communities in the rural areas, she had stepped on a bamboo spike, severely injuring her right foot where the mole was. She did not see a connection, but she made sure her gynecologist examined the mole. It was Valentine’s Day, 1984, when they operated. Just two weeks earlier, Reyes had given birth to a healthy baby boy. She was told that they would simply be “cauterizing” the mole, a relatively minor surgical procedure, as a precaution. After the operation, the look on her doctor’s face told (Cita) something was wrong. The biopsy, the doctor finally said after some hemming and hawing, revealed that the mole was cancerous. “They told me ‘It was malignant...’ — past tense— ‘...but it was over, it’s gone”, Reyes recalls. “The surgeon had removed the mole and a great deal of the surrounding flesh to make sure no abnormal cells remained. A potential catastrophe had been averted. Everyone heaved a sigh of relief. “I was totally unprepared when, three years later, I had a recurrence,” says (Cita). “In fact I was totally unprepared for cancer.” “In December 1987 a lump had appeared in her groin, a lump as big and as hard as a golf ball. Because she did not want to spoil Christmas, (Cita) and her husband — journalist Ed Aurelio Reyes — decided to wait until the new year before having the lump removed, in spite of their mounting anxiety. The operation confirmed their worst suspicions. The diagnosis was melanoma, a rare and particularly virulent form of skin cancer, which, if unchecked, can spread through the lymphatic system or the bloodstream or attack other organs. “That was when I felt what all patients feel when told ‘You have cancer.’ I couldn’t talk. My mouth was so dry. I was holding back the tears. My first response was anger: why was this happening to me? I didn’t want to go. Ayoko pa! (I’m not ready!) I was only 27. I was not bedridden. There was no pain, no dizziness. I could do anything.” “(Cita) found little comfort from her physicians. One doctor told her flatly that there was little that could be done. Chemotherapy and radiation — the standard medical arsenal for most cancers — were not effective against melanomas and would do more harm than good. All they could do was to surgically remove the lump that grew, and pray that none would grow on a vital organ.” “I went to another doctor, who told me: ‘You’re like a ticking time bomb — any time you could explode. Then again you might not. We can’t say. The only thing to do is make the most of your time, while you still have time.’ This made me all the more angry and terrified.” One doctor wanted her to try chemotherapy and radiation, the risks be damned, against the overwhelming opinion of all her other doctors. (Cita) was tempted but eventually decided against it. Another laughed in her face when she asked him for research materials on melanomas so she could understand her disease. The information, they told her, was highly technical, implying that she couldn’t possibly understand it, and even if she could, what good could it possibly do her? “I could accept the fact that I had cancer. But they wanted me to accept that I was going to die. That I couldn’t accept. So I became angry, and anger became my ally.” After these frustrations, (Cita) decided to take her life in her own hands. That became the turning point. With the support of a sympathetic doctor, she embarked on her journey to healing. Pains in the Body, in the Heart Here are excerpts from Cita’s diary entries that deal on the various aspects of experiencing pain – literally, which debilitates, and much more deeply, which demoralizes: 5 September ’93 / past 2 am The past month was another trying month for me, especially the last three weeks (of August). Pain in my right knee was intense again (similar to what I suffered last January and mid-February). I was limping in pain. Last April-July, I ignored it because I could still bear it. But this August it became impossible for me to walk. The more I walked with the right leg, the more the pain, the more my knee hurt, till finally it swelled. Then I became really anxious. Because even resting wouldn’t make the pain go away. And every step seemed to drain so much energy from me. I was anxious because I was already in a macrobiotic diet. Truly I have been working very hard again. Whatever the outcome, I resolved this: my body is doing its best; it will continue to do its best till its last ounce of breath. Whatever this is, even if this may be cancer, I will not be angry or feel that my body has let me down. Whatever it is I have to face, my body, mind and spirit will face it, supporting each other. Whatever disability may prematurely develop, I’ll discover a new way of coping. I will not stop trying and trying until I’ve found a way to adapt. Then, again, I felt liberated. I felt relief from some kind of fear. I felt some assurance. I felt faith that I would be able to handle the difficulty. Then I remembered the many, many people with disabilities in this world – the blind, crippled, deaf, paraplegic. I felt being part of them. I felt like them – each step was difficult. Each day meant exerting a lot of effort to do what others could do without even thinking about it. And I felt discouraged no more. Ironically, I found some consolation in the thought that things might not be as bad as I feared, that things might just become difficult, but in the long run, I could still be alive and go about doing what I had long planned to do. I really felt free of that fear of losing control. 4 October ‘93 / Monday 10:30 am. Yet many of these nights, I was tossing and turning in pain. (Oh, boy! If you think you have a high threshold of pain, wait till you experience bone pain, especially after surgery!) Friday was especially hard, because that was the night of the operation-biopsy. I also thought my threshold for pain was high. But, by God, how I groaned, moaned, tossed and turned, sat up, lay down, raised my butt, twisted my waist (just my waist). Oh boy, just to get a lying or sitting position that would allow me to sleep. I was getting frantic. I was telling myself, it’s only because it’s the first day, I’ll just have to sleep it through for one night. Maybe. I would doze off because of fatigue and weakness. Then I would wake up again with my knee throbbing, burning with pain, excoriating pain, and with the sky still dark. “Oh! When will daylight come?” I would beg, for daylight would mean that many hours would have already passed and the pain would have subsided. There is an army inside me fighting cancer. I need to equip it with better and stronger weapons. Not a weak one. Most certainly I don’t want to compromise the army that is fighting the cancer. 5 October / Tuesday 11:30 We had just come from Dr. Vega, one of the best radiologists, I was told by Pael (my doctor and close friend). I asked how responsive melanoma is to radiotherapy. “Poor response.” But he said we have to try it anyway for pain palliation. How long will pain be palliated? “We can’t say,” he answered, adding that it can be controlled. How long can it be controlled? “We can’t say.” Have you treated other melanoma patients? “No.” “In the States, during my training, we came across a patient. But it didn’t help. It had spread all over his chest.” Then I asked if it would make a difference if I had knee surgery first and radiotherapy on my left leg later. He said, “No.” How much dose would I get? A total of 25 rads for 25 days. C: What would be affected? V: Nothing, just the skin. C: But the bone marrow, lymph nodes and lymphatics would be affected? V: Yes. C: How much can the bone marrow take? V: 6,000 rads. C: What are the other side effects? V: None. We have the bone marrow elsewhere. It is still localized. “In summary,” I said, “what you’re saying is that the risks are not very serious but the benefits are not guaranteed.” He replied “Yes.” October 27, ’93 / 10:40 am This is the fourth time I have bathed my leg with the tropical rays of the yellow fireball we call Sun. My right leg is almost normal in shape. Except for the kneecap – for the “doorknob-like” kneecap which bulged badly. I gazed at my right knee, at what used to be my right knee, and lamented that it was gone forever. Very quickly, my mind consoled me. “ ’Tis a small price to pay for relief of the pain and for some more biding time… hopefully, several years more; a small price to pay, indeed.” October 27 ’93 / 2:40 pm I just came from outside, from the driveway shared by five apartment doors. I walked 100 steps with crutches, then rested my butt in a chair and my right leg on a white footstool with a throw pillow on top of it. While resting, I flexed the five toes of my right foot, exercised my ankles, and did isometric exercises with my legs, then with my thighs. For variation I lifted my leg in front, then to the left, and then to the right, while contracting the muscles in my right thigh and hips. All these I did up to the count of 100. I found most difficult carrying my weight with my arms and left leg. My two wrists and left leg had already begun to ache. But what was more difficult was the boredom of counting to 100. I reminded myself to have the patience, that this was part of the lesson I had to learn to cope with my new situation. Then, I thought of the good Lord. “Thy will be done. Thy will be done.” I went on with the exercises. 29 October ’93 / 8:15 pm This is the third day I’ve been ambulating with my crutch (non-weight bearing) in our driveway. (I started ambulating on the 10th day after operation.) Strangers passing by the street where our driveway leads out have stared at me. (Our driveway is shared by five units in two rows of apartment houses.) The first few stares I didn’t mind. But today, I became conscious of their curious gazes. I became defensive inside. These feelings were hidden behind an expressionless face – neither friendly nor hostile, just a poker face. But I was defensive. I felt defiant. Several thoughts raced through my mind… “I don’t need your pity…” “Hindi ako piláy. (I’m not lame.) I’ll be able to walk in a year’s time.” But the strongest thought of all was… “Meron pa akong silbi. (I’m not useless.) Hindi ako magiging pabigat. (I won’t be a burden.) You’ll see. Wait till I get well.” Then I felt the monotony of counting my steps as I ambulated vanish. I became more determined to be stronger each day. I wonder why I became that defensive. For all I know those strangers staring at me hardly even gave a thought to what I imagined they were thinking. I guess aspects of the reality of my new situation are gradually sinking into me. Already, I’ve lost much of my day-to-day initiative.. I’ve passed it on to my husband. Earlier today, I rationalized that this situation was temporary, that it would change when I got better. Before I took a nap at 2:30 this afternoon, I prayed hard. I prayed for strength and perseverance, that I may endure my situation, that I may win this 3rd quarter fight. I woke up with an aching leg. It was throbbing with pain but I have somehow gotten used to it. What raced through my mind was why up to now I’m still basically cool. I’ve not lost my temper. Was I weakening? Giving up? Resigning? But my mind was still keen and sensitive to how I could cope better. I was assured. I must be patient and cautious with my movements – as I said, I walk on my left leg. It’s so easy to stumble and fall. And as I have to be in beating melanoma at this stage – I must be cautious and patient. 30 Oct. ’93 Another question has been nagging me for days… why do I keep on with what I am doing against cancer? Is this life, the way I’m living it now? Very bland diet, no fruits, no processed foods (cakes, pastries, ice cream, pizza, fries, potato chips, chocolate, etc.), reducing activity, and now losing my right knee joint and having a more restricted life as the battle is tougher now? Am I happy? Is life worth living under these conditions? 18 March ‘94 Dear Pael, These past days, you often cross my mind. And so, I’ve decided to write. On the whole (since February), I don’t seem to be getting well. And there are signs that I’m getting worse, or at least I fear these signs are bad signs. For three days now, I wake up feeling rested. But when I sit up, I feel a gush of weakness rushing to my head, and I feel rotten and sick. By mid-afternoon I’d feel a little stronger. Sometimes, I feel weak and feverish towards evening. Other times, not. It gets harder to breathe. Now I would frequently cough (dryly), especially when I’m talking. I can’t speak loudly without coughing. It’s as if my lungs can’t get or retain enough air. I’ve been feeling anorexic too. I feel sick and so hungry at meal and snack times. Yet, when I eat, something inside me wants to throw it out. So, I force myself to eat, even half a plateful, fearing that it would be worse if I don’t force myself to eat. 5 April ’94 / 2:30 pm I have reached my lowest point of existence: I am completely dependent on a caregiver. I cannot walk. My prayers, unimaginable before, have been 1. God, please help me to breathe. 2. God, please help me to eat. 3. God, please help me to sleep. Dinadasal ba ang mga ‘yan? (Does one pray for these things?) Realizing this one day, I just burst into tears. No words could come out. Then, an inner voice refused to be pitied, to be cowed. “Hindi! Hindi ka pa rin kawawang-kawawa. (No! You aren’t that pathetic.). There are no inner limits. Prove it, Cita!” As if another person, a part of me answered, “But it’s just too hard. It’s so difficult. I have just lost control.” Then, I wept, really wept. I hit my head with my clenched fists. And I wept and wept and wept. That emotion exhausted, I grew sleepy. I clutched my rosary and thought, “God will help me through. God will always be there.” And I fell asleep. – o0o – Today, at past six, I opened my eyes. I immediately tested my breathing. I could still breathe as yesterday. I moved my arms and legs. Then, I breathed a prayer of thanks for another day, and for yesterday. That’s how it’s been since February ’94. I can’t tell how long I’ll live yet. It’s as if I could grow worse and begin dying anytime. You know… dying as in not being able to get up, eat, speak. Before Holy Week, for the first time, I dared ask my sister how much time I have left in a worst-case scenario. No matter how I have learned and tried to accept my fate, I always get/feel threatened by the thought of dying. And so, when my sister said, “assuming the disease progresses more rapidly, about three weeks,” a lump in my throat formed and made me speechless. My first thought was, “Wow, what can I achieve in three weeks? Many times I sleep in the day. What more can I do? Rather, what little can I do?” After giving my daily dose of acupuncture and B12 and liver extract injections, my sister left. 15 April 1994 / 2:57 pm I’ve rarely dwelt on my despair more than 3-5 minutes. This is how denial helps me. I refuse feelings of helplessness, of self-pity, of anger and resentment. I’ve been too afraid to fail so I’ve never entertained these feelings. I shut them out. Although like flies, they would constantly sneak back, often catching me unguarded. 16 April ’94 / 12:13 am For the first time, my heart was able to accept completely and wholeheartedly whatever it is that God wills of me. My heart has become willing for whatever outcome. It felt as if something heavy was leaving me. It was one of those moments in a stream of consciousness when suddenly some reflections would gush and flow and enlighten or inspire. I had been pretty worried these past 4-5 days of not being able to eat normally. At most, I could only take in 3-5 spoonfuls of rice and viand. Fruits and fresh vegetable salad I could tolerate more. But the overall amount consumed would be too little compared to what my body needs. I’ve frequently vomited. Fortunately, I don’t vomit all of the small quantity I’ve eaten. But nausea is a very rotten feeling. I can’t do anything but lie down on my stomach. But I can’t do it long because my two tumor-laden legs would ache. The realization was sudden. In tears, I told God that my life came from him and that only he could really have the final say. And so, I said, all right, even if I still pray to live, I entrust to you my fate, since my life came from you, anyway. Then I felt a heavy burden of fear creep in my skin and leave my head. 26 April ’94 / 10:57 pm Nights are the hardest for CA patients. It is hard physically, as they weather the symptoms of this dreadful disease. It is also most lonely and desolate in the long night till the wee hours of the morning. My nights have been getting harder and harder. My pains and aches are felt the most in these dead hours. Lately, nausea, gases in the stomach, and difficult breathing have made it worse. It’s too upsetting. 16 April ’94 / 1:16 am Last early morning at about 5 am, I really couldn’t sleep and so I took Tramadol, even if this mild opiate causes nausea and vomiting. I couldn’t stand it any longer. It was not only the pain, it was also the restlessness caused by pain and the numbness that would compel me to toss and turn, get up and lie down, turn to my right and shift to my left, or lie prostrate. Any position was a discomfort, even the half-reclined position. Decision to be In-Charge Refusing to watch the sunset of her life idly, she plunged into cancer research herself and adopted a self-designed approach to fighting her cancer, which defied all gloomy prognoses about her “dying soon.” And she lived on for a full 15 years after contracting the disease (ten years after first detection). In an undated textfile in her floppy diskette marked “cancer,” we find her talking to herself, and to many, many other people who are similarly situated. She talks about panic: “Okay, so it has been confirmed. You have cancer but you still can’t believe it. Your mind is filled with the question: “Are you going to die?” At the same time, your doctor is urging radical treatment in a week or less. And you do not know what to say and have left it to the doctor. “Oh, it is a terrible time, the hardest time. No words can express your confusion, your panic. In this state of kapit sa patalim (clutching desperately even on a sharp knife), you are asked to make a tough decision that feels like you may be gambling with your life. “This period is harder for some of us if we have witnessed a traumatic experience of a dearly-loved cancer victim, and even harder for those who have experienced more than one trauma. “But the situation leaves you not much choice. So, you must get as informed as you can be so you can make the best decisions. And this is not easy. “Many Filipino doctors may not be helpful in educating you, partly because they are not sure how much you can take. Also, because they have not been trained in medical school to empathize with cancer patients and these cancer specialists are pessimistic about cancer in general. So how can they inspire hope in you? “It is reflective of the present state of conventional cancer care. “Unfortunately, little progress has been made in effective cancer treatment. “Both specialists and wholistic physicians say there is no ‘one method’ in the treatment.” For this reason, Cita encouraged me to develop the idea of patient empowerment in the form of pointing out available options for informed choice. She had passed away by the time I finished an article and first delivered its contents in a talk before the First National Conference on Breast Cancer in October 1998. That article said, almost straight out of Cita’s mind: “As a life-threatening illness, cancer disempowers people, not only through physical debilitation but also, or even more so, through demoralization. Myths woven over decades around the mind of patients and loved-ones turn the instinct for survival into a strong fear mired in the quicksand of confusion, misunderstanding and self-pity, along with acute financial and technical difficulties, especially in present Philippine social realities. Fear weakens whomever it grips. “Much of the myths can be swept away by information accessed by any cancer patient or care-giver from a synergy of information, knowledge and wisdom that can either complement or challenge the medical and health care professionals’ much-vaunted near-monopoly of it. That monopoly has turned doctors into death-schedule-predicting gods and patients into helpless case studies obeying doctors’ orders and basically waiting to die on schedule. (The talk discussed the following points as much as possible in living experience dynamisms:) “Empowerment can be had from informed choice, including, most basically, information about all options being open every step of the way from prevention (of cancer) to treatment modes to be chosen, if any. In at least ten important issues, wide ranges of options are actually open, by assertion, for the informed free choice of the persons with cancer (PWCs) themselves. One of the items in my article confronts the doctors’ “infallibility” directly: “4. Options: whether or not to believe a doctor’s prognosis especially that which predicts a definite length of time (or “taning”). Any doctor’s prognosis that gives a time estimate is definitely a guess, according to hitherto established statistics on average cases. Such past statistics cannot at all affect any present case; a present case will be part of future statistics, which the doctors will know about even much later. Doctors have been giving “taning” as self-fulfilling prophecies: they intimidate and demoralize their patients into fulfilling the scary prognosis. Cita herself wrote, in a situationer for Laban sa Kanser (LAKAS) that: “Hardly anyone understands cancer: not the patient, the family, the public, nor even the medical community at large. Many cancer doctors hardly educate patients and encourage them to fight this disease. Standard therapies are hardly explained.” That is why it is understandable that many patients, when told that they have cancer, tend to abdicate all their capabilities and even their stakeholdership in their own survival and quality of life and “leave everything to the doctors.” Panic over a life-threatening illness in one’s own body can numb or paralyze one’s rational thinking (like perhaps my own if I were in that place). Still, in Cita’s case, her firm decision to squarely confront that situation enhanced all the more her thirst for information and sharpened her mind for clearer comprehension. Striving to be well-informed She started preparing herself to become well-informed on the subject, from its generalities to the particularities of her own type of cancer. Dr. Myrna Soriente-Estrada, M.D., her own sister and a founding Board Member of LAKAS, had prepared a long orientational paper on the basics of cancer, which Cita studied diligently as a starting point. Titled “What is Cancer? What is Cancer Rehabilitation?”, Myrna’s undated paper starts off with the following introduction: “Cancer is caused in all or almost all instances by mutation of cellular genes that control cell growth and cell mitosis. The mutated genes are called oncogenes. Usually, two or more different oncogenes must occur in a cell before the cell will become cancerous. “Only a minute fraction of the cells that mutate in the body ever lead to cancer. There are several reasons for this. “First, most mutated cells have less survival capability than normal cells and therefore simply die. “Second, only a few of the mutated cells that do survive lose the normal feedback controls that prevent excessive growth. “Third, those cells that are potentially cancerous are usually destroyed by the body’s immune system before they grow into a cancer. This occurs in the following way: Most mutated cells form abnormal proteins within their cell bodies because of their altered genes, and these proteins then stimulate the body’s immune system, causing it to form antibodies against the cancerous cells, in this way destroying them. Indeed it is believed that all of us are continually forming cells that are potentially cancerous but that our immune system acts as a scavenger that nips these abnormal cells in the bud before they can become established. “Why is it that we do not develop literally millions of mutant cancerous cells? The answer is the incredible precision with which DNA chromosomal strands are replicated in each cell before mitosis takes place and also because the ‘proofreading’ process cuts and repairs any abnormal DNA strand before the mitotic process is allowed to proceed. Yet, despite all these precautions, probably one newly formed cell in every few million still has significant mutant characteristics.” Soriente-Estrada’s paper then proceeds to identify several predisposing factors that increase the probability of mutation, such as ionizing radiation, certain types of chemical substances, physical irritants, hereditary tendency, and certain viruses. It also illustrates the two major differences between a cancer cell and a normal cell, and explains how cancer cells kill by competing with normal cells for nutrients. Eric Caruncho’s account continues: The first step (for Cita) was to know the enemy. (She) began to read everything she could about her disease. The sympathetic doctor, who by now had become a friend, gave her some materials. She wrote to the National Cancer Institute in the U.S. and to a melanoma research center in Australia, both of which offered more information. She wrote to clinics in Sweden and China, where experimental therapies were being tried out. In a short while she became an expert on melanomas. Indeed, I was a witness and an extra hand as she embarked on a wide search for names and mailing addresses of sources of such information. She knew well that to assert her right to decide on what is to be done on her body, she might as well know fully all the attendant factors for choice so that her own decisions would be as educated as possible. Here’s a partial list of cancer-related institutions in the world she wrote to, a good number of which sent her letters and/or useful materials: — American Cancer Society, Los Angeles, California, USA; — Australian Cancer Society, Sydney, Australia; — British Association of Cancer United Patients; — Ludwig Institute for Cancer Research – Melbourne Tumour Biology Branch, Melbourne, Australia; and — Office of Cancer Communications – National Cancer Institute, Bethesda, Maryland, USA. She even sent a letter to Sweden presenting her case to Dr. Bjorn Nordenstrom, who had discovered an electric approach to healing in general and destroying tumors in particular. Her efforts were rewarded with much material pouring into her personal library, mailed by the institutions she had written to, or handed over by friends and relatives who would photocopy articles in various libraries. Cita would painstakingly study even those photocopies that were barely readable. The materials pertained to clean and healing diets (like bio-dynamic vegetables, bran diets, macrobiotics, etc.), some unorthodox therapies (like coffee enema and urine therapy), and, most importantly, readings focused on her own illness—malignant melanoma. Some of these readings were: —“Malignant Melanoma: Recognition and Management,” by Neville C. Davis of the Queensland Melanoma Project, Princess Alexandra Hospital, Brisbane; —“Malignant Melanoma” by the Cancer Information Service of the British Association of Cancer United Patients (BACUP); —“Information for Patients Relating to Malignant Melanoma,” compiled by the Sydney Melanoma Unit, Royal Prince Albert Hospital, Sydney, Australia; and —“Specific Herbal Literature on Cancer,” part of the Ticzon Herbal Manual, published by R.R. Ticzon Management Corporation, Mandaluyong, Metro Manila, Philippines. Cita got to understand her illness well enough that, one time, a doctor was talking with her about using a certain drug for a proposed chemotherapy procedure on her, and she flatly told the doctor, “But that particular drug does not work on melanoma!” After doing his own research, perhaps more carefully this time, the doctor returned the following day to tell her she was right. Cita upholds that every patient has the right to decide what is to be done or not done on her or his own body, even on the basis of intuition, instincts and “gut feel.” But she says it pays to be well-informed enough. Cancer is something you cannot control, but Cita felt she could confront cancer with dignity in active stakeholdership. In a diary entry in February, She defined her framework, indeed an invincible one: I cannot allow cancer to hang over my head like the Sword of Damocles—paralyzing, intimidating me to inaction, non-enthusiasm, being aimless and purposeless. Blocking the way, blinding me to what I need: To discover about life, its meaning, its purpose, its worth; To discover what life is for; To live life to the fullest, loving its wonder and glory, its splendor and beauty. To learn to be strong amidst sorrow, to be graceful under pressure.
Cita kept a copy of an anonymously written poem, What Cancer Cannot Do: Cancer is so limited… It cannot cripple love, It cannot shatter hope, It cannot corrode faith, It cannot destroy peace, It cannot kill friendship, It cannot suppress memories, It cannot silence courage, It cannot invade the soul, It cannot steal eternal life, It cannot conquer the spirit. Caruncho’s account continues: “In 1989 (Cita) had another recurrence. This time, the lump appeared in her abdomen. Another operation was performed and several more lymph nodes were removed. The setback plunged her into a depression, but it did not last long. “Should I now accept that I might fail, that I might not recover?” she asked herself. “Can I plan for the next five years? The next ten? Life holds no guarantees. I resolved to live by the day, as fully as I could. I began to pay attention to other aspects of life, apart from being well.” It was a full life she actually lived between and after all of those six surgeries, that people did not suspect she had the “Big C.” Those who were told would refuse to believe, and those who had to believe could hardly contain their admiration and amazement. For most of that time she seemed much healthier, and was definitely more active, than they! Enriched by a deeper spirituality in her last year, Cita made out a “Living Will,” wrote and circulated her profound thoughts linking spirituality with active service of the people in an unjust social order. She also breezed through art lessons that I gave right at her post-operation sickbed. Her visual arts talent now shines in watercolor (non-classic) and oil paintings the Soriente-Reyes family gave out as gifts during her last Christmas season. Caruncho’s article continues: (When Adul de Leon died,) Reyes began to find meaning — and comfort — in a few lines of verse that her husband Ed had written years before, upon the death of a friend: Magawa ko sanang ngumiti Sa aking paghimlay: Tuldok sa pangungusap Sa aking buhay. Death is nothing more than the period at the end of a sentence. The important thing is not the period, not even whether the sentence is long or short, but what it says. She also learned that the struggle with cancer need not be a grim contest, that it can be a journey toward healing and self-discovery. As she learned more about herself, (Cita) found new sources of inner strength. It allowed her to weather two more recurrences, and the death, after a brief battle with breast cancer, of another close friend, environmental activist and Lakas founding member Len Jos. “When I reached my sixth and then my seventh year, my doctors began to congratulate me,” Reyes says. “They said: ‘You’ve proven that you can coexist with your cancer.’ Others said my body must be very strong, or the cancer must have been weak, but I believe that a healthy diet, a healthy life-style, physical exercise, carrot juice therapy and maintaining a positive attitude all had a role to play — plus, of course, the support of my doctor. It takes a lot of support, a lot of study, a lot of introspection, to trigger the healing process. But when mind, heart and body are harmonized, you will reach that point.” Although she realizes that, owing to its chronic nature, melanoma will be a lifelong battle, she believes that she has already triumphed. “The longest survival record for melanoma is 25 years,” she says. “I’ve already reached the mystical five years and I am now on my second five. There will be more fives for me.” As a self-empowered woman fit for active stakeholdership, Cita was always considering a wide variety of options. She later encouraged me to prepare a list of issues and attach a “Full Range of Options” to every item. This is what I came up with, which was much later widely circulated, as Cita had wished: (Note: for each number, many other options exist aside from, and between, those stated.) 1. Options: whether or not to think and talk seriously about Life and the inevitability of Death even before anything happens or develops that usually causes such talk. (There are advantages in “pre-need thinking and talking” about these subjects, the second one of which is usually avoided by Filipinos, especially the superstitious.) 2. Options: whether to be health-conscious and disease-preventive or to live it up, enjoy life absolutely from moment to moment, and “cross the bridge when you come to it.” This really is a matter of personal choice defining, and defined by, one’s own innermost personal philosophy, and such choice should be freely made without any external intervention or interference. 3. Options: whether or not to go along with the popular belief that cancer is automatically a death sentence. (The belief has long been disproved by all those PWCs or patients with cancer who have had remission. Many of them have outlasted their doctors.) 4. Options: whether or not to believe a doctor’s prognosis especially that which predicts a definite length of time (or “taning”). Any doctor’s prognosis that gives a time estimate is definitely a guess, according to hitherto established statistics on average cases. Such past statistics cannot at all affect any present case; a present case will be part of future statistics, which the doctors will know about even much later. Doctors have been giving “taning” as self-fulfilling prophecies: they intimidate and demoralize their patients into fulfilling the scary prognosis. 5. Options: whether to concentrate one’s thoughts on the billions upon billions of cells in the body that are perfectly healthy or to focus on the hundreds of thousands of cells that are not. 6. Options: whether or not to get second or third or fourth opinions and whether or not to believe any of them. 7. Options: whether to treat a life-threatening illness as a “punishment from heaven,” and wonder “why me?”, or to treat it simply as a biological development that has to be faced. 8. Options: whether to take and keep a firm command over one’s own life even through such crises as life-threatening illnesses or to entrust everything to “those who know best” (the doctors). 9. Options: what respective roles to assign to or allow for members of the nuclear family, members of the expanded family, special friends, close friends, and other friends, associates, the office, etc., and whose advice to take very seriously, to take seriously, to consider, and to simply note. 10. Options: which treatment or combination of treatments to use, if any. So-called alternative therapies have worked miracles and some of them have received the grudging respect of the bio-medical community and gradually “mainstreamed,” considering that promoters and practitioners of alternative therapy systems have been fellow bio-medical (Western medicine) doctors. Some of these alternative therapies concentrate on diet regimens (carrot-rich vegetarian diets), exercise regimens (aerobics, for stamina and enhanced resistance), or place focus on certain body organs to observe (iridology and pulse reading, for diagnostics) or to stimulate (acupuncture and acumassage/acupressure), utilize herbal medicine, or combine physical with spiritual or psychic healing. Standard biomedical regimens are chemotherapy, radiotherapy and surgery (diagnostic & therapeutic), with varying degrees of expected efficacy. Just to have these thought about, and/or discussed in families and groups, would already be helpful to everyone involved. But we can synergize (sanib-lakas) all of these personal truths by sharing them with one another, and enriching and refining them through exchanges. (Ed Aurelio Reyes, “Facing Cancer Together Through Empowerment and Synergism,” talk at the First National Conference on Breast Cancer, October 1998 at Miriam College, QC.) Back to Caruncho’s article: While (Cita) was in a hospital, a doctor-friend had told her: “Don’t rely on Western medicine only. Look to Eastern modes and try to combine the two.” Shortly after, she began to see an acupuncturist for treatment. She also began to explore alternative therapies. She became a vegetarian and embarked on a rigorous ‘cleansing’ diet that severely restricted what she could eat (certain vegetables, and no salt, sugar, oil) and required downing several pills daily. “After six months of this diet, I lost my voice, had joint pains and found it hard to breathe. My husband finally flushed the pills down the toilet. I was convinced that a lot about the diet made sense, however, so I modified it. I decided I would not be a slave to any diet but would design my own, based on my own experience.” Sincere Concern for Others Caruncho describes how Cita took upon herself the role of forming a cancer-fighters network: She had just met feminist and theater activist Adul de Leon, who was then battling her own cervical cancer. The two became friends and began to explore the idea of forming a group, composed of cancer patients like themselves, from which the members could draw strength and support in their struggle with the disease. De Leon’s friends in the women’s movement banded themselves together as the “Friends of Adul” to help raise funds for treatment. Later, other cancer patients coalesced into a group calling itself “Women Fighting Cancer.” These groups, however, were largely ad hoc in nature. De Leon had in mind something more stable — a real support group that could help patients and their families make the complex physical and psychological adjustments needed to successfully cope with cancer. In early 1991, (Cita) came out with the concept for Laban sa Kanser or Lakas—”Cancer Fighters” in English. She got together a group to form an organizing committee, which began to lay the groundwork. But by that time, Adul de Leon was dying. “It was through Adul’s death that I discovered a quality of life that transcended time and space. I kept visiting her until the week before she died, and everytime I approached her room, I felt a struggle. I felt tension. How would she look? How would I be able to console her? And every time I left her, my heart would be heavy. But I also experienced a depth that I had never felt before. It’s difficult to describe it, but when two humans relate on the spiritual level, when they share valuable insights on life, when I saw how beautiful she had become in her suffering — it is a soul-to-soul bonding that fills one with overwhelming happiness and gratitude and appreciation. It fills one with strength. “Rather than terrifying her, (Cita) found that confronting the inevitability of death, as coda to life, liberated her. “Two deaths helped me — Adul’s and Ed’s father’s. Their passing was peaceful. It was just like getting tired and falling asleep. I was afraid of pain and suffering, but when I witnessed peaceful death — wow, going away wasn’t such a big deal after all!” In the end, Adul had simply squeezed her hand and said “thank you.” She died a few days later.” In her diary entry of December 7(?), 1990, she reacts to explanations on Adul de Leon’s case and treatment by asking angry questions: “I sense something terribly wrong here. Why would a patient be subjected to such dangerous treatment and then be left on her own to suffer the irreparable consequences? Don’t the advocates feel some responsibility for the complications? Just because there was a patient’s consent, is the doctor absolved of the responsibility of complications, the damaging effects of cancer treatment? “If in the long-run and in the end, the battle would be up to the patient, then why (should they) intervene so aggressively with the patient, risking the patient herself? The very purpose of treatment is defeated, is contradicted (in how they do it now). Another doctor’s argument was: “But the case was advanced, anyway.” In the theoretical sense, yes. But Adul was up and about and not bed-ridden. And their argument to this was, why should you wait until that point before you take drastic actions? I think the point is that the bounds and limits of cancer treatment have not yet been fully and adequately explained. For another, cancer treatment is not closely monitored and sustained outside “crisis” periods. The main strategy, I gather, is to kill the cancer cells. Its practicality is so much constrained by factors like injuring the unwitting host, or some part of the person, if prolonged or given in lethal doses, damaging vital systems of the person’s physiology; if the host is old or weak, or has financial constraints.” In the same diary entry, Cita describes her interaction with a doctor. She had found his behavior so “insensitive”: “Talking to him, the expert, was not much help emotionally. He seemed so distant; the things he said didn’t make me feel any stronger, any more confident to fight the disease. “He seemed so unfeeling, unconcerned. But perhaps he cares. Maybe he was just protecting himself from getting involved. “Then we talked about the case of Adul. He said she was suffering from the effects of radiotherapy. He said she belonged to a rare percentile of patients that reacted adversely to the treatment and therefore suffered tremendous damage to her body. He was talking about her as if she were (herself) a disease, (just) a statistic.” Three months later. In February 1991, she wrote another agitated entry: “What an enormous price to pay for such a slim chance of victory! Such is the battle against cancer in the framework of western therapy, specifically, cobalt and surgery. “If Adul were triumphant, it would have been very well worth it. But a defeat would bring so much pain and suffering that would push her to the limits of her endurance, and worse, as what seems to be happening now, dramatically shorten her life and make her few remaining years very difficult and her passing years replete with suffering. “So her friends and relatives may know, I write about my confusion about her whole experience. I do this for her, for those who love her, for me and the many more cancer patients confronted with the problem of how best to fight cancer or just how to simply face it. “She was diagnosed of cancer of the cervix in 1989. Stage II-B, invasive undifferentiated carcinoma was the prognosis. She was advised radiotherapy as surgery was no longer advisable to her. She went to the States (May 1989?) and had what? Where did she get a radioactive implant? When was she bombarded with cobalt? For how long?” She was also very much concerned over developments in the treatment of the cancer ailment of Paula Carolina Malay, fondly called “Ayi,” who had recently died. She wrote in her diary on April 5, 1994: “Last March 26, (a physician friend) admitted to me that there was very little that modern western treatment could offer cancer patients. “She confided that (the doctor managing Ayi’s case) told her, one week after she had died, that Ayi’s condition was more post-op than the rapid advance of cancer. “So my fears had come true. I feared Ayi would not be able to take chemo. “She took chemo twice: in September, then in October In that period, she was hospitalized thrice. September, November, December. Her last hospitalization was in end-November, up to December 24th. “By November she refused chemo. The week she was hospitalized last, in end November ’93, she couldn’t take in any kind of food. “It was pathetic. Juliet, her helper, recounts to me that she would feel so hungry and would be desperate for food but she would just vomit it all out. Ayi would be in tears. ‘They were so sad that at times, they could not bear to watch her eat. They had to go away,’ Juliet said.” Half a year earlier, on September 16, 1993, she had written her worries about Ayi Malay in that same diary. “The previous days, I’ve been really frustrated. I was watching my president (Malay was the Founding President of LAKAS), before my very eyes, at the mercy of the conventional treatment. “This time, more than anytime before (of other cancer cases), I felt very strongly that conventional treatment would do very little for her. “I had wanted to persuade her to try other methods –acupuncture or Gerson Therapy. But at first base, the door to this opportunity seemed to have been shut. “(Ayi’s daughter) requested me to talk to her about chemo. I came. When I came, what was told to me was ‘I have left everything to the doctor.’ “What else could I say? Still, with her daughter, I tried, by giving her materials. “Monday, I was encouraged. She said she would not have chemo and had asked the doctor to let her go. She said, ‘But the doctors won’t let me go.’ “Then she talked to a friend who dissuaded her from chemo. I had said my piece. “The oncologist said, “Okay, pwede na sa November ang chemo.” (We can do chemo by November.) “The next day, today, nag-chemo na siya (she underwent chemotherapy). Concern for other patients, even complete strangers sick of some other ailment, was also reflected in Cita’s diary. For example, this entry dated October 27, 1993: “I also remembered the patients of POC (formerly NOH). I could not forget them. “There were patients, many of them, in the corridor and not in the ward rooms, because they could not afford the ward rooms! “Because they were charity patients, isinisingit lang ang schedule ng operation nila (their schedules for operation were just being squeezed in). The patients who could pay were given priority. Ellen, a nurse who did SP on me, said that some ‘had to wait 2 months before they could be treated.’ And some, who were finally scheduled for operation, could not afford the meds needed immediately during operation and post-operation. “Some patients could not afford a cane, crutches or just gauze and plaster. “While I was confined in a suite. “For medication, metal crutches, we spent about P70,000. My crutches were the good kind, theirs were wooden and were painful. It took only a week to schedule my operation. I had three special nurses a day for four days. Dr. Jenny de la Paz of ATRC and Sr. Celia Magsuci of CPM were there, supplementing (the nurses). Dr. Omar Arabia also shared valuable information. And Ate Lulu Quesada was there almost every day, bringing food and comfort and encouragement and appreciation for my efforts. And all my dear friends who visited me. And my family’s support. (This will be a separate entry.) “Then, I went to the children’s ward, accompanied by my new friend Bong, a supervising nurse. I saw four cancer-afflicted children – a 15-year-old girl with bone cancer and she was having chemo. She had lost a lot of hair. The remaining hair clinging to her scalp was like a silvery veil draped on a bald head. The next was an 11-year-old boy, then a 14-year old boy. All these children were bone-thin, as if they came from Somalia. All were having chemo. Aris was bald. But what scared me most was what was happening inside their bodies. “I prayed that they would never lose the inner strength we all have to fight illness. “Then, we came to a five-month-old boy, so cute and cuddly; he beamed a very captivating smile at us. His right thigh was swollen, as big as my upper arm. “I asked what they would do to him. It hadn’t been decided yet. Could he survive chemo? Or surgery? My heart went out to the boy’s mother. “I told myself, ‘At least I have had 38 fulfilled years; this boy hasn’t even learned to crawl.’ ” LAKAS: Strength in Solidarity Cita was the main organizer in 1991 of Laban sa Kanser Inc. (LAKAS), a patient-centered support network of care-givers and advocates fighting cancer through a synergy of information, efforts and fighting spirit. This is the LAKAS Vision, the envisioned dream... We envision a healthy society-one not threatened by cancer but one which prevents it. A society where cancer incidences are maintained at the lowest levels possible and where cancer patients are enlightened and empowered to take control over their health and lives. We envision an enlightened public taking active roles in cancer prevention and protection. so one will not have it; - so one’s cancer will not worsen if she/he has it. so one’s cancer will not recur if she/he has attained remission, or - so one’s quality and dignity of life will be protected if one’s cancer has inevitably worsened. We envision an enlightened public promoting healthy lifestyles and preserving the environment. In so doing, we attain protection from and prevention of cancer. And the LAKAS Mission: The envisioned role... LAKAS is a support group/network of cancer patients, their family members and friends, concerned individuals, especially health professionals. It will promote and develop support systems for the empowerment of cancer patients, their families and friends and enlightenment of the public against cancer. Empowerment of cancer patients and enlightenment of the public involves social support. LAKAS had the following founding officers:
Paula Carolina S. Malay – President Violeta Len Jos – Vice-President Cita S. Soriente-Reyes– Executive Secretary Lina Dagatan – Treasurer Ana Maria R. Nemenzo – Auditor Myrna S. Estrada, MD – Director Ed Aurelio C. Reyes – Director Reena Marcelo – Director Len Jos, upon her death, was replaced in the vice-presidency by Prof. Minda Luz Quesada. Malay was later succeeded by Quesada and still later by Edith Tronqued-Burgos. Eric Caruncho describes the LAKAS spirit in a separate article for Sunday Inquirer Magazine, after interviewing Cita: Once cancer patients get together, they can be a strangely happy bunch. It is not so much that misery loves company, but that a burden shared is a burden halved, and happiness shared is happiness doubled. What, one might ask, could people afflicted with cancer be happy about? It is a cruel relentless disease, and the cure is often not much better — repeated doses of radiation, surgery, the ingestion of highly toxic drugs in the hope of killing the cancer without killing the patient. But cancer can also be a great teacher, and for those who learn well the lessons it has to teach, the reward can be life. No one, it might be added, feels the joy of living more keenly than someone who lives with the possibility of death. More and more studies have begun to show that a patient’s attitude often affects the outcome of the disease, and that people who have taken charge of their lives, seek treatment aggressively, learn as much as they can about their disease, fight tenaciously for their lives, and keep on hoping for a much higher chance of survival than those who give up. One result of the new findings about what author Norman Cousins calls “the biology of hope” is the popularity of support groups for people with cancer and their families. By helping people muster their resources — physical, psychological and even spiritual — to fight the disease, these support groups can provide a valuable adjunct to medical treatment. Cita’s work included organizing sharing sessions for cancer patients and their families, preparing handouts, networking with various cancer-related entities, like the Philippine Cancer Society and the House Committee on Health (then chaired by Rep. Freddie Webb) that was looking into ways of discouraging smoking. Cita led in preparing various modules for the growing LAKAS network. The modules covered various topics, including the following: — Challenging the Death Sentence and Aiming for Remission, Early Detection and Prevention; — Cancer Treatments: In Search of a Cure; — Managing Breast and Cervical Cancer and Maintaining Womanhood; — Managing Pain and Terminal Illness; and — Building Your Support Systems and Improving Your Quality of Life. She even wrote a statement in connection with the bid to open the Bataan Nuclear Power Plant, and also a research on unhealthy lifestyles that abetted cancer. This was one such material: “Many people have developed unhealthy lifestyles, seen in their eating habits, smoking, drinking and even in drug addiction. There is a tendency for excess — consuming too much cholesterol, proteins that are hard to digest, salt and other sodium compounds, over-refined substances like white sugar and white flour, and too much caffeine. Prolonged over-consumption of these substances has been known to cause degenerative diseases, like cancer, heart diseases, diabetes, hypertension, arthritis and others. “The city folks’ diet consists heavily of processed foods, which have been virtually stripped of digestible nutrients and stuffed with artificial nutrients, colorings, flavorings and preservatives. These additives are indigestible and they stuff the body with harmful wastes, reaching toxic quantities. Taking too much coffee and hard drinks, as well as smoking, cause lung cancer, emphysema, hepatitis, heart diseases and others. “These are heavily promoted, especially by advertisements, as part of ‘the good life.’ ” [Cita S. Soriente-Reyes, “Concept Paper for the Philippine Cancer Fighters Society,”1990]. She appeared as a panel speaker in the environment-oriented monthly forum, called Kamayan para sa Kalikasan, to explain this fully. Cita was still working for LAKAS all the way to the very eve of her homecoming to the Source. This note was handwritten on a “post-it” mini-page and stuck to some materials. It was transferred to the inside back cover of her notebook-diary after the materials were picked up. It was dated 4 June ’94, just a full week before she passed away (that time she was just asleep most of the day): “Dear Ate Lulu, “I’m sorry for the delay of these (materials). I had thought I sent them already. Yung alertness ko ay apektado ng drugs. (My alertness has been affected by the drugs.) “Love you, “Cita “P.S. 1 copy for you, 1 for LAKAS”
But with all her work for LAKAS and with all her efforts to prolong the life and alleviate the pain of cancer patients like herself and her close friends, Cita was undergoing a slow but sure process of being prepared for the time God himself would be saying, “It’s time to go!” God may not have said it with the sound of near-absolute certainty that many doctors do, but God’s quiet ways, complete with roles for certain angels, have more convincing effect. The next chapter is about this. And about its effect on Cita. |
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