lunes, 19 de julio de 2010

We Shall Take Wings as Eagles

My daughter is 14 going on 15. I am 49 going on 50. She was only 11 years old when I was diagnosed with brain cancer. When I was told that I was going to die within one year unless I had surgery and follow-up treatment, perhaps chemotherapy and/or radiation, I immediately asked how many more years I would survive if I follow the whole treatment. “You have between 5 and 7 years of survival,” but some people live longer than that. At age 47, I had lived long enough to see most of my dreams come true, but leaving my sixth grade daughter under the supervision of my 71 year old husband and my 18 year old son was definitely something I never thought about.

If I did not follow the treatment I would skip all together those difficult adolescent years in which all daughters hate everything about their mothers. Not too bad, I thought. But, then, I would have deprived my daughter from the pain of figuring out her own self image while trying to escape from her dreadful mother. Dying while still being the adorable mom of a little girl was probably easier. She would have remembered all those birthday parties we shared together, her soccer and basketball games, reading, dancing and swimming together. She would probably remember how fascinated she was with the images of Virgin Mary at Museo del Prado in Madrid, or her disappointment when she did not find any Virgin Mary at Musée Pompidou in Paris. We both enjoyed Museo Miró in Barcelona, and Museo Dalí in Figueres. Would she remember that she needed my hug when she got scared while listening the story of the Nazi attack in Museo Guernica, or while entering to the attic where Ana Frank wrote her diary in Amsterdam? Was she going to remember our life together before being shattered by cancer?

Sometimes I was so weak, that I did not know if I was going to make it. After my first surgery, I needed therapy to be able to walk again. Once I was able to walk, I was informed that I could not drive because the pills I needed to take to avoid seizures could actually provoke a seizure. Soon after my second surgery at MD Anderson, when I was still in chemotherapy and trying to recover my ability to remember words, my daughter asked me: “Mother, when are you going to get better? Do you see, if I need to depend on daddy and Danilo, my social life is over.” I had to tell her the truth that I did not know when or if I was going to get better, but I was going to do my best so that she could go back to having a normal life. She was still mom’s little girl, but I needed to trust the mothers of her classmates so that she would not miss a basketball game, a musical or birthday parties. I needed to delegate on other women so that my husband could help me at home during my recovery process.

My husband, my son, my aunt Tati, and so many people helped so that I could go back to “normal.” But sometimes I felt so weak and sick that I wondered how much easier it would had been if I just gave up and forgot about those 5 to 7 years of survival. I prayed, and asked for an answer, because I needed to know if it was worth the trouble of surviving. I soon found an answer: “But they that hope in the Lord shall renew their strength, they shall take wings as eagles, they shall run and not be weary, they shall walk and not faint (Isaiah 40:31).” While in doubt, I chose to hope and have faith that my strength would be renewed, that I would take wings as an eagle, that I would run and not be weary, that I would walk and not faint.

It might sound childish, but I decided that I should have some input in this whole renewal process. So, I choose a happy picture of myself when I was at my best, hanged it right in front of my bed, and decided that if God wanted to renew my life, he should rather make me look closer to when I was 26 years old. Without even knowing it, I had spent the last 10 years of my life suffering terrible headaches. So, I wanted to go back to the strength I had 21 years before, when I felt a lot better. To be frank, I would spend a week in bed while I was in chemotherapy, followed by three good weeks in which I would walk to the next door gym so that I could regain some energy. For a whole year, I did nothing else than recovering my health, my memory and just trying to get better.

Every morning, I looked at that picture in the hope that I would sometime “walk and not faint”. On my way to the dinning room, before having breakfast, and after looking at my old picture of those happy days gone, I would say “thank you Lord, for another beautiful day, and all those wonderful days still to come.”

I have survived cancer for two years and a half. My daughter is now 14. Yesterday, she had one of those difficult adolescent tantrums. She was crying because her school uniform is a little tight and she would not look good unless she looses at least 5 pounds. She then looked at me and asked for help. I told her that all what she needed to do was eating healthy food every three hours, exercise every day, and hang a picture on her wall so that she could see every morning how she wanted to look like. “I don’t know, Carla, how do you want to look like, perhaps like Lady Gaga, Penélope Cruz, or Jennifer López? It doesn’t matter, the important thing is to focus on a goal and stick to it.”

Then, I told her: “don’t forget to thank God for being so funny, smart, beautiful, for the wonderful life you have lived so far, and for the great days to come.” “It works,” I told her. “Do you see that picture on my wall? If I can feel so well after two brain surgeries, a year of chemotherapy and a strict diet to get out of diabetes 2, you can easily fit into that skirt within two or three weeks.” She stopped crying and went up stairs to her bedroom. After several hours, she came back to show me her chosen picture. This time around, I was the one crying. I saw my own picture hanging on her wall. Perhaps my cancer made her grow-up faster. She is supposed to hate me now and love me later on. We need more than five more years to survive adolescence. I still hope for the best: we “shall take wings as eagles.”

sábado, 6 de febrero de 2010

Living la vida Kafka

I am almost there, but not quite yet. It was the best of times; it was the worst of times. Honestly, I don’t know anymore if I am dead or alive. Perhaps I died and was sent to the purgatory until my soul is purified or definitely melted to be thrown right into heaven or hell. I am not speaking here about surviving cancer, but about surviving the fake security of a HEALTH INSURANCE.

Having two brain surgeries, a year of chemotherapy, a whole year of self-taught language and memory therapy, and a second year of a strict nutritional and fitness program to deal with the type two diabetes developed as the side effects of the steroids and medicines I took to kill cancer cells were a piece of cake. What no one told me was that Health Insurance Companies are the mirror image of Life Insurances. One makes its profit if you die soon, the other if you live forever. Now that I have proven been stronger than Cheer, and cockroaches, health insurance companies are throwing atomic bombs on me.

My original plan (Blue Cross of Puerto Rico) was bought by Triple S and after I thought I was in heaven already, I was sent back to daily misery. Although Triple S agreed to follow Blue Cross original contract till 2010, they systematically denied every single brain M.R.I. for different reasons. The first one because their reimbursement procedure was different to Blue Cross and nobody explained the difference to me even though I specifically asked about it. I had to file a second claim and my money was reimbursed one month later, just in time to do my second M.R.I. Even though I asked again for the specific procedure and I followed it, this time the assistant who pre-approved my brain M.R.I. put the information on the computer screen but forgot to send the information to Saint Peter so that he could give me the microchip needed to get into heaven. For a second time, I had to fight against the axis of evil. Thank God, an angelic soul who happens to be my cousin, another Carmen, helped me navigate this struggle. This time around, on March 1st 2010, right before teaching my classes at the University, I will be waiting right in front of the door of the M.R.I. Center of Auxilio Mutuo Hospital, with a number at hand that proves beyond reasonable doubt that my M.R.I. had been pre-approved and even though I have to pay $1, 215.00 for it out of my pocket, hopefully, Triple S will return a portion of the money in a timely fashion. Hopefully, I will be able to focus only with the normal anxiety of having my veins being filled with fluids while I mentally review my class notes at the same time as my brain is screened for an hour. That’s better than handling a health insurance company.

I was told by another angel who works in the other side of the coin of the insurance business that only one out of the five health insured patients whose claims are denied actually go back to the process of submitting a second claim. Health insurance companies actually make money out of the four patients that are so sick to fight that they decide to die in peace rather than dealing with them. I am here with a number written on the palm of my hand, I am a number, branded like a slave or a cow, waiting to survive this third time around, trying to learn how to navigate the intricate map of Triple S’s bureaucratic procedures. But this was never my idea of true meaningful knowledge.

You might think that I am just an ungrateful complainer who does not appreciate this second chance to be alive. Well, maybe my understanding of living did not include spending hours on the phone fighting to get the procedures that I obviously need to maintain my survival. Now that I feel great I want to enjoy life, and life for me is having time to help others (my family, my students, my community), and to broaden my horizons through all kinds of spiritual, intellectual and leisure activities. I know there should be time for everything, but this is just plummeting down, draining away all my concept of time.

Well, instead of reading, writing, preparing for my classes, research and community service, I have to spend hours fighting with two demons that are constantly sending me back to the purgatory: one is called Triple S and the other is Blue Cross. This second is a powerful one. I have been fighting for NINE MONTHS to make BLUE CROSS pay for a Psycho Linguistic Test performed at MD Anderson on April 2009. Doesn’t matter that I submitted a copy of a letter in which BLUE CROSS pre-approved this “service,” they are still denying to pay for it. I can sue them for not paying, but hey, I am in purgatory right now, afraid to deal with a lawyer that might send me right into hell. If lawyers come in, they will probably suck all the money that these two blood suckers have left me. More over, just when I thought that eventually Blue Cross will submissively accept that it is better for them to pay in order to avoid being sued (after all, I have a paper in my hand with a written pre-approval of that darn procedure), MD Anderson sent me another new bill statement in which I now have to pay double the previous amount reported by them. I immediately called them to find out the source of this change. Well, now BLUE CROSS has also denied the same Psycho Linguistic Test that they performed the day right before my surgery, on February 18 2008. Well that’s a shot I don’t know how to fight, since, although I explained to the Hospital that every procedure needed to be pre-approved by Blue Cross and I have a witness that back me up on this one, I don’t have the time or desire to fight against whoever the idiot was who did not follow the proper procedures. After all, another idiot at MD Anderson scheduled for me two breast enhancements, and another one scheduled my anesthesia pre-evaluation for the day AFTER surgery. This shit has happened before. As the joke goes, a Catholic will think that if shit happens, I deserve it. Well I am that naive protestant who thinks that if I work hard enough, shit will not happen to me. But I have gone far beyond those three mental thoughts. However, I am not foolish enough to ask why this shit happens TO ME. It happens to everyone. WE JUST HAVE TO BLOW THE DARN SHIT and destroy this system even if we kill all our energy in the process. This is surreal. I will like to throw some of this shit to those tea party throwers. They actually have time for a lot of shit.

Going back to my story, since Blue Cross was bought by Triple S, Triple S is not responsible to pay for services previously “provided” by Blue Cross, and Blue Cross is just not paying out of their whimsical knowledge that, after all, I might not ruin my years left to survive fighting with an almost none existing ghost that resides somewhere in main land USA. For those who have followed this blog, you might understand how necessary it is for a brain cancer patient who happens to have a tumor in the left lobe of the brain to know whether or not some language skills were there both before and after surgery. Moreover, this test evaluates whether or not I am succeeding in creating new shortcuts to cope with those old connections that were lost forever. My work and means of survival depend on my ability to think and express thoughts through language. Here I am, with a number and a paper at hand, waiting for someone to read my pain.