quarta-feira, 23 de janeiro de 2013

Testimony IV Journey of Oncology EERP-USP

Today is 11 months and 8 days I was diagnosed with testicular cancer. The memories are still vivid in my memory: a deep anguish consumed me as I watched my exams in the waiting room of my urologist's office. What would the doctor say? After a long wait, finally it was time for my appointment. That day, the sky was overcast and it had rained a bit. It was a gray friday. After 1 month and a half with pain in the testicle, the doctor began to suspect something more serious than the initial suspicion of a simple infection. I sat down, handed the exams to the doctor. He asked what I was feeling, and looked at my exams, calmly told me he had talked to other doctors on your team, and what I really had was a tumor in the testicle that need to be operated. As he spoke, I felt my being shattered, sinking into a dark abyss, cold and lonely. I put my hand in front of my face and cried in despair. The doctor looked at me with a look of compassion. Watched me while I cried, and then told the good news to me, "Look Leonardo nowadays heals virtually all cases of testicular cancer, and looks, this surgery will not bring any problem in your life, because the other testicle compensates for the lack of this that we have to take, and in a few months we put a prosthesis there, and will not give even to tell which side was affected. You do this surgery I forward you to an oncologist in a month and should're all finished. ". This scenario was a sweet illusion that lasted a few days of my life. Made surgery, found that beyond the primary tumor in the testicle, I was with three other abdominal tumors, 3 inches each. That changed my perspective a lot. The treatment lasted one month before, now would last three to four, with the possibility of chemo did not work. I needed to do 3 sessions of chemotherapy and redo tests to see if the abdominal tumor had been destroyed. If the tests continue accusing the presence of tumors would require another surgery, with 40% chance of being sexually impotent. When I received the diagnosis and started to go in the marathon doctors to hear opinions about my case, my life went into suspension. My routine has changed and every day was a new step in a journey that I did not want to do, but it was necessary. My freedom to come and go was torn from me, and now who dictated what I would do or not were doctors. This is extremely frustrating. Suddenly my college, my internships, my projects entered in the background. The priorities were reversed and everything that was in my power to do was wait and have patience. He had no quarrel with whom or with whom complain, after all, who I blame? And if I found a culprit, it would change anything in my situation? I had no idea what I was going through. A series of thoughts invaded my head, but what tormented me most was that the chemotherapy did not work I would have to go through a bloody surgery that could leave me impotent.
Understand one thing: when you have cancer, the chips are falling slowly. The first falls on the day of diagnosis, when receiving the news. But each event, each phase of treatment, more chips are falling. On the first surgery, another fight between denial and acceptance of the reality of cancer happens. Then when you go for chemotherapy, is yet another process of acceptance. Suddenly I found myself with a company that arrived uninvited and would be for the rest of my life this inside me. And I still wonder, is it going to happen some day when I did not remember I had cancer?
One question that was repeated several times within me throughout the course of treatment was: "Why me?". If 1 in every 270 men have this cancer,why me? Why not with the neighbor? Why not with a distant friend? Why by this time the bad thing was with me? What did I do to deserve? A voice inside me screamed, angry, and echo that cry reverberated within me, finding the purest silence. I had no answer. I thought about criminals, people who deliberately do some kind of harm to another human being, and I wondered, why not him? Why not a damn thief political Brasilia? What did I do wrong to deserve this? But nature has no morality whatsoever. It is indifferent to my values, my anger and my grief. Given the nature, I'm just another body moving, struggling to survive on this planet. Existence has no attachment to my life and I do not consider special. Some obscure point in me believed that I was "good" in terms of moral human tragedies never happen to me, only with others. Some people risked give me an answer to why I had cancer, and here are some answers, ranging from religious explanations to the biomedical reasons. 1) Because you are a very special person. 2) God gave you this disease because you know that you are strong to endure. 3) You actually "won" the disease that was to fall on someone else, but you're pretty good and decided to put that cross on your shoulders, to relieve a brother. 4) Because I've been cycling a lot throughout my life. 5) Because I was born in a city that has radiation levels above average. 6) Because I did a great evil in a past life and now I decided to pay this debt with a disease. 7) Because I kept grudges about my father. 8) By an unlucky fate. 9) Why unluckily I suffered a random genetic mutation that caused the cancer. These are just a few, but I could list a plethora of explanations about why I had cancer, and I assure you, they are good for nothing, except to distract me from my real pain. One thing just has more of an explanation when none of them are true. No explanation was able to quell the revolt against life as the diagnosis of cancer has raised me. There is no explanation, there is only acceptance because the way things are, if they were to be different, it would otherwise. After much fighting with life, my soul surrendered and accepted cancer as part of me. I realized that I had no other option but to surrender. The cancer that shattered my illusion of mind built on 21 years of life. My life as I knew it was over. My heart and my soul calmed bent before my destination that is far greater than me. I do not have total control over my life. In fact neither is my life, but life lives through me. The problem is that while I was fighting with life, thinking that I was deceived omnipotent front of it. I can make some choices that will influence my future, but there is a past infinitely greater than I who determines before him and I can only bow down and accept that I am part of the greater whole. Though it brings me suffering and misfortune from time to time, this is the sea that I have to swim.
Five days after the diagnosis, I was on the operating table. Until they get to the operating room, I passed many nurses and each wondered what I would be operated. "Cancer in the testicle," I said. Today I'm used, but during treatment, I was scared to see the expression of the people when they heard that I had cancer. Cancer is a magic word, just open your mouth to say that I see a look of terror etched on people's faces, while they try to hide this fear and pretend to you that all is well. The truth is that to others I had become "the bringer of evil." My illness bothers you. The haggard face, a bald head and scars around the body of someone who has cancer show a tough side of life, that we would not see. I learned hard lessons about life and death, and now I want to tell you some of them.

1. Life is extremely fragile

No matter how many times you hear or read phrases that have the same sense that I just said. Even if you have lost a loved one or work with people on the threshold between life and death, you can not know it at the level that a person who is threatened with life knows. The experience of realizing that your own body has a problem and that it can put an end to his life is staggering. It was a sensation that touched the roots of my existence, threw open my own finitude and placed on the ground my illusion of being powerful and immortal. Words did not serve anything, the only thing left was the silence before my condition of being human, made ​​of flesh, ephemeral, mortal. A silence reigned coming from the bottom of my soul and a sobbing took care of me. A cry that opened my heart and eased the pain I felt. But death is very likely the best invention of life because in so much pain, I had perceptions about the nature of life and the human condition, insights that today are my most precious treasures. We prefer not to look at our mortal condition. Only when one sees it is his body that is in play when the threat is with you. At this moment, when I realized it was me, I had the profound realization that life is just a moment and I did not have all the time in the world to live.

2. The human being is a solitary being

When I was inside the room where it would be my first surgery, I was waiting a long time the doctors arrived. He looked at the ceiling and had a strange feeling. Everything was a common practice for professionals who were there. It is an extreme paradox, because while I was terrified by the situation of being anaesthetized  and take me a testicle, for doctors and nurses, that was more common a Tuesday filled with surgeries. It gave me security on the one hand, since what was new for me, for them it was a habit, on the other I felt helpless, why the problem was with me and only me. Nobody here in this room had cancer. Their lives remained the same, each with their routine, their freedom. I saw a very lonely place. The loneliness that I speak here is not to be with no one around, because I was in the room that was about 3 or 4 more people. The realization that I had is something obvious, but do not stop to reflect on everyday. The health problem that I had was in my body. This meant that other people would continue to live their lives with their problems, and I had a problem that was mine, in me. It was that I needed to go through painful treatments, surgeries, invasive procedures. In front of life, I'm a body separate from the others. And at this point of individuality is what I need there. It is only for me and for me I need to express all that is in here. And this movement is paradoxical because the more I immersed myself in my existential loneliness, the more I was able to open to life and to others around me. There is a phrase of alchemy that says: "All that is properly separated can be properly united." And that's exactly what I experienced. I had to separate myself and walk a dark and unique, which gave me a chance to see who I am.

3. Pain is part of life

Go through surgeries and chemotherapy sessions brought me much suffering. Chemotherapy is a hellish process, which left me bordering on insanity. It's absurd how the body and mind suffer with this medicine that was my salvation. Although it is difficult to remember and talk about the reactions that chemotherapy left me. When I finished the third and final session, every bad thought I should pass was over, but that was when I surprised myself and had to do the second surgery, which was a very difficult process. A cut of 26 points in the belly, overall. Recovery was slow, arduous and painful. With so much suffering physical and mental strain, what I learned is to accept that pain and discomfort are integral parts of life. Both the pain and the pleasure are fleeting and the whole existence spent oscillating between these two sides of life. Today I surrender before my own suffering and have respect for the sacred function that pain has on nature, both the physical and emotional pain. There is to experience the pain and learn to deal with it. There is no escape route or alternate analgesic that address. With this I found that the pain and sadness lead me to a depth of my being that joy and pleasure are not able to take. The suffering and anguish of treatment made ​​me know the darker side of nature. And it was only after looking at this dark side that I could see better the color of life.

4. Love is simple

 The first surgery had to do was quiet. To remove the affected testicle, they make a cut in the pelvis of about 10cm. Recovery was easy and I do not remember much difficulty. Performed 26 days after surgery, I started chemotherapy. The chemo was definitely the hardest part of my treatment. It's a long, boring, depressing, sickening. The person who helped me most during chemo was my girlfriend. Her presence calmed me and soothed my suffering. If you observe nature, you will see that living beings are endowed with an autonomous system that guarantees the search for satisfaction of all basic needs. One example that really struck me are the monkeys, when they begin to feel an earthquake will happen and come together in the trees are silent, next to each other, waiting for the earth to tremble. Do not have much to do, so the latter is becoming close to each other, to reduce the fear, the feeling of weakness and aloneness. During treatment I was dating and having my girlfriend around during difficult times made my way lighter. I needed someone who could see me and accept the situation that I was unwittingly save me or change my situation. I was extremely boring, angry and depressed during the worst days of chemotherapy. I only had eyes for death, my love of life disappeared completely. But I knew I could count on her, she'd be on my side. I could not talk much, so we exchanged looks and we were holding hands, I lay in bed and she sat in the next chair, and there our love flowed. She did not want to tear my suffering, I make sure I look good or everything would just say that, but give your heart, your look at my reality, and that his presence was enough. When I needed to cry, cried, and she did not try to stop me, however, said: "Cry all you need." I found that love is something extremely simple, love is the ability to be present with an open heart to another being who you see as special. I'm a guy so happy to have had this special and loving woman by my side when I needed it. My journey would have been more difficult and lonely if I did not have as a companion. I will be forever grateful.

5. My life was worth

When I was doing chemo, often went to the hospital and doctors' offices. I found other people on treatment and saw many cases of cancer, often with worse prognoses and treatments longer than mine. I thought of the multitude of illnesses and accidents that could happen to me at any time, and how life falls apart in a few seconds. Then I thought about the sequence of events that happened until I got where I am living. How many times my life was threatened and I do not know? How many accidents I got rid of maybe two minutes for leaving home soon, and I'll never know? How did I get here alive? To do chemotherapy, I entered the oncology ward of the hospital, passing in front of the quarters of people who were admitted either to do the chemo, either by being in palliative care. I watched those people, skinny, weak, with only a trickle of looking at life. It was hard to face that. And then I thought, "Is it worth living? It is worth face myriad dangers that life places? Life is not safe. ". My conclusion after a few months: being alive is a miracle. Gradually, I realized that I believed in a series of illusions, I do not know how and why they learned. Where I got the idea that I was special and that the hand of fate would never weighed me? When I was taught that bad things only happen to others? Fortunately these illusions crumbled, and every time I cried was a few of them I was leaving. It is lighter live without them, today I see life with a very different freshness. Anything can happen. The risk is constant and it is this flow that I exist. There is no security in the face of existence. I can only bow before me of my own destiny, nothing more. There are things that are much bigger than me. With that I realized that I've got a lot of life. Live these 22 years has made my life worthwhile. If I died today, would die with gratitude for having experienced a bit of life. This sense of gratitude for life that I received is the greatest gift that cancer left me. Have my heart filled with joy at being alive is something real to me. Gradually, I am increasingly away from those dark days, and when I look back, I see a dark valley that was part of my trip. I'll never be the same.

6. "The true temples of the earth are hospitals"

During the three months I spent doing chemotherapy, the biggest fear I had was having to do another surgery at the end of treatment if the chemo does not end this account with abdominal tumors. This fear came from a stupid doctor who attended me and said I had 40% chance of getting impotent with this surgery if it were necessary. Several times I dreamed, or rather, I had nightmares about this doctor. Every time I had sex I thought: "Is this one of the last times I'll have sex in my life?". It was hard to take pleasure in this situation. You can imagine how important sex life for a 21 year old. Inside I was quite right and decided that if indeed I were sexually impotent, I do not want to live anymore. I was so shaken by this statement of the doctor who did not want to talk about it with anyone, just thinking I shuddered with fear. A big mistake of mine was not had asked other doctors about this risk, but my fear was so that I felt much better not to comment. There were 3 months of anticipation. It was then that the end of chemo I did the test to see if I need surgery or not. Done the exam, my doctor gives me the news that surgery was inevitable. I went out of the air and started to sweat. He heard the doctor talking to me and my mother talking to the doctor. I could not focus on anything. The doctor called the nurse and put me on a stretcher, they measured my blood pressure and heart rate. The doctor wanted to admit me to take tranquilizers. Gradually I was coming back. I went to the bathroom and let the water drain, wet the neck and wrists. I asked my mother and the doctor stop talking, I needed a bit of silence. They stopped for 10 seconds and then continued, a more desperate than the other. I came back to earth. The scene was heartbreaking. Suspicions were that the chemo had not worked, and I would have to do surgery and more quimios, this time even stronger than the first. My doctor, seeing my desperation by the possibility of being powerless, said to go to Sao Paulo, consult with the pope of uro-oncology, Dr. Miguel Srougi, the Syrian-Lebanese Hospital. He is a doctor of stars, politicians and millionaires. I thought I knew what it was luxury to get into this guy's office. Price of consultation: 700 reais. Five secretaries, a doctor. Two-hour delay in the query. The doctor said he was given a very serious case at hand, it would take a while. We expect a lot and I was angry. I thought to myself: "700 real and this guy still makes you wait 2 hours? I'll tell him that this is not done no, that's a lack of respect. I'm paying to him, he will listen.". Finally he arrives. Examines me and tells me to go to his office. With patience, clarity and education to envy it explains my whole case and I recommend surgery. He ends the exposure of it and I say, "Okay doctor, is ... I was wondering what are the chances of me getting impotent with this surgery?". With a brilliant medical objectivity he answered me, and I'll never forget the words he said: "Sexually impotent? The chances of you getting impotent with this surgery are the same that if I make a cut in your throat and you become impotent. ". I explained to him what that doctor had told me. He gave no word on the blunder that other, just assured me that there was no chance of this possibility. It was all he needed to hear at that moment. A world-sized weight was removed from my back. Furthermore, he asked me if I had health insurance. I said I had, but that was in need, would not cover the surgery. Then he said if I wanted to do the surgery with him, I just need to pay the hospital expenses. That part of it was not necessary. As we left, the secretary said that the consultation was complimentary. The generosity of Dr. Srougi rid my parents a great debt. The total value of the entire medical team that performed the surgery on me was around 20 thousand dollars. And that part we were not charged. What is not paid with money, you pay with your soul. And I'll pay searching one day have half the bounty on this guy. After a few months of surgery, sent a letter (email) to Dr. Miguel.

"The true churches on earth are hospitals. Here you know the suffering, the value of human life. The proud and the arrogant are low, rich and poor are equal, the bad and the nasty authoritarians become complacent: they are naked, take the mask; here is that you know what it is to live, which rescues for life, not in a church any, the guy goes in there, pray ten minutes and leaves. He can even heal, heal your soul.
But here we heal the soul and the body. This is the true temple, where gold is life. You understand the impact that social inequality has on the human being, poverty, lack of education causes disease. "
                                                                                                   Miguel Srougi

Dr. Miguel Srougi,
Hello Doctor! Hopefully scouring his memory can remember me! I am Leonardo, and was operated by you and your team on the 19th of April this year. The surgery was a retroperitoneal lymphadenectomy. I'm from Poços de Caldas - MG, and study at USP in Ribeirão Preto. On the day of surgery, a tremendous coincidence occurred. The surgery was performed prior to my in Gervázio (swollen prostate). He is a longtime friend of my parents, but lost touch for about 20 years, when he moved to Recife. As fate that we met him that day and in that situation. There, he invited me to spend a few days at his beach house in Porto de Galinhas. I accepted and was now July, I spent about 10 days there on holiday. I'm healed, happy and healthy. The recovery from surgery was quite difficult, but the bad memories are slowly getting back and envision increasing the life ahead of me.
I am very grateful to you and your team, I quickly responded, respect, effort and dedication to everything that happen in the best way. I spent the whole treatment of chemotherapy hoping I did not need this surgery because a poorly qualified doctor told me I had 40 percent chance of getting sexually impotent with surgery. When you told me that was impossible, my relief was immense. Their generosity was very important to me and my family, after all, we really had no way to pay. All people talk about you and you know somehow speak well of you. You do your work with love, dedication, security and clarity. The cancer leaves many sequels, and do not say only physical, but in the soul. I have only one testicle and I ended up infertile. However, today my life is happier and deep, because I won a darkness that only those who pass know what it is. You have been an ally in this journey and made my walk lighter. Thank you doctor. As you said, the scar on my belly will always remember me of you, and in my heart and the brand of your attitude, generosity and attention made me a better human being. I cheer a lot for your work to be multiplied in this world by people who have learned from you how to care for a patient. Below is a photo that I'm in Porto de Galinhas, in the house of Gervázio. Now no more bald, how you met me. I am happy and joyful, and routine exams go well. Big hug!

7. Friends make life lighter

   I found the cancer so I went on vacation. I was away from all my friends. I gave the news on the internet. I do not know how each of them reacted. When I finished the first chemo, I came to Ribeirão to resolve the treatment time in college. I found my friends. Most of them did not know quite what to say. If I were in their place, do not know too. They were afraid of making the wrong questions. When you have cancer people think that if they speak a word wrong you can unravel in front of her. This is not true. My friends could not talk right with me. Some gave messages that were hoping for the best, while others wanted to convince myself that everything would soon. The truth is that at these times the weather was heavy because of the pain we faced naked. How to face his friend of 21 years who is bald and dejected with a glimpse of what is death? Having cancer young is to show your friends that perhaps death is not so far away.
      Arriving in Ribeirão, I came across a big surprise. But first I need to explain something. This is me and this is my white glasses.

        When I got into college that sunglasses became my trademark. Actually I suspect that most people thought I was a little ridiculous to wear a white sunglasses. And I ended up having to confirm this suspicion when we gain intimacy and began to speak in my face that fact, I was with the ridiculous white sunglasses. Some kinder friends said, "Oh man, so I would not use this glasses, but that is in you is well know ... or maybe we've grown accustomed. ". Well, that's the story of the glasses. I came home and soon reached everyone by surprise, each with a white sunglasses like mine.

They had made a video that traced good pieces of our university life. It was exciting to receive this gift at that time I was so blown. At the time I was in the eye of the storm and could not say anything before this, I was just talking without words. I know they all put a little on my skin with this gesture of buying a white sunglasses and make the video, without words that were said to me. For you, I have a poem:

It may be that one day we fail to tell us ...
But while there is friendship,
We will make it up again.

It may be that one day the time goes ...
But if the friendship remains,
One of the other is it going to remember.

It may be that one day we move away ...
But, if we are true friends,
Friendship will closer us

It may be that one day no longer would be here ...
But, if you still remain friends,
Born again, one to another.

It may be that one day all over ...
But with the build friendship all over again,
Each time differently.
Being unique and unforgettable every moment
Who live together and we will remember forever.

There are two ways to live your life:
One is to believe that there is no miracle.
The other is to believe that everything is a miracle.

Albert Einstein

8. My parents are ordinary human beings

         When I think of my childhood, I see that it can be considered very good compared to the overall average of the population, with regard to the factors of living conditions. I was born in a middle class family, never went through experiences of deprivation, where I studied in the best private schools and had no childhood tragedies, like losing a father, witnessed scenes of violence, suffering a serious accident, being physically abused or live with chronic illness in family, like alcoholism.
         However, I suffered emotional trauma that now I know are crucial to my life and my choices. My childhood was marked by a sense of not being looked upon by my parents. They worked hard, probably trying to earn money to make a better life for our family, and when they came home, they were tired. They wanted to rest, and I wanted their attention, however, was painful trying to get the attention because they clearly did not have much energy to offer and always seemed to be busy with other things that I thought were more important than what I needed. The perception that they often forget my presence at home and in their lives was common, and it worsened when I watch fights between them. Swallowed the tears and felt a pain in his chest when I felt forgotten. My mother has a character quite impulsive and when she got angry for some reason, I already knew what to expect of his reaction. She had outbursts of anger in that cursed everything and everyone who was around. A simple situation was a trigger that burst the powder keg. She screamed a lot and his eyes scared me because I did not know exactly what his limit. For me it was the constant fear that she would lose her head in these outbursts of anger, which often happen during hers PMS. My father is an extremely patient person. It is tolerant and often endure great torments silent. Most of the time he was present in tantrums of my mother, he did nothing. He looked as if this was common, as anyone who hopes that one day it could be resolved by itself, as much as heard him say was to call my mother "neurotic." Neurosis, one of the words I hear most in my college in psychology. He did not have the same fear that I, after all, the child of my position was weaker than his husband. He was not afraid of the tyranny of my mother for not being subordinate to it as I was. A deep sense of guilt accompanied me, whenever any of these chaotic situations happened in my family. I always thought the dislike that I witnessed between my parents was my fault, do not ask me why. Today I know that feeling of agony that I felt was guilty, but the time was something he could not name. I ached to see my parents exchanged caresses, loving words or acts that would stimulate the love between them. It hurt even more to witness scenes of hatred and anger that a cursed and blamed the other in front of all the children, without ceremony, like we watch what conditions. Over the years, I got used to that dynamic. They say that human beings have an amazing capacity to adapt and that is both its best feature, as the worst, because we adapt to everything, even to suffering, to stay alive.
Over time my defense reaction to this was to create a dynamic idea that did not need my parents to live. I could not count them, there could not be trouble, not show my weaknesses, ask for something, anything, after they saw my needs, did not realize how it all affected me. All I had to do was show the face of perfection, giving the least work possible and try to cure them somehow. I felt I could do this, not only could, as was my duty to try to solve their problem.
With everything I had to go for treatment, I needed a lot of my parents. For everything to be with me in the hospital, help me up when I needed to go to the doctors, finally, I was in a position where you could not abdicate their help. Fortunately I was able to enlist the aid of both, for different things. My mother got closer, having more free time, and was with me in two surgeries. Both the chemo as the second surgery, I cursed my mother enough. In times when I was angry I did not think twice before downloading my anger on her. She received with simplicity and gave no response to provoke me. She always tried to see what she was making so I do not get annoyed. While cursed, felt alive and full of energy, as if I had the right to be stupid and rude to her. This "change" that I gave her was not the solution to my child's pain, but a reaction of despair on my part.
Dad part further away from the treatment, by its characteristic and further to work most of the time. But whenever I needed something, go the pharmacy, take me on chemo, he promptly did, with ease, without complaining even once. However my father was never the target of my anger discharges. During treatment, my father wept in secret for my condition. I know that my mother lost several nights sleep. Both my father and my mother have huge difficulties in dealing with my cancer. They can barely pronounce this word. Always seek other terms, but when calham to say "cancer", said in a lower tone, as if afraid of the word. Do not blame them, after all, both of my grandfathers died of cancer when they were between 40 and 50 years.
The treatment ended and I was realizing how my relationship with them had been transformed. They witnessed me in my moment of greatest vulnerability. Gradually I realized that I had not and I have nothing to do with the fights that I witnessed during most of my life. Today, if my parents want to love or hate, it's their problem, because for me, they will always be that couple who, dying with lust for one another, one day decided to love, and of this union, I came into the world.
Father, Mother, I am very proud of you. You have already fulfilled the mission of father and mother to me. You have taught me how to live and not live. Took care of my survival and I endeavored to have the best life you could give. It is a privilege to have you live with me, and while life allows, it will be very good. 'll Take forever within me love you, and I can never repay what you have done, just bend over and thank me. I love you, thank you.