Cancer and The Hispanic Community

From my perspective the cancer diagnosis in my culture is devastating. I know what you may be thinking it would be devastating to get this diagnosis in any culture. The word “cancer” is a taboo because it is associated with having a slow and painful death. I have noticed this from my experience with the Hispanic community. The lack of knowledge could get in the way of early detection and screenings. One of the scary things in the Hispanic population is that Hispanics have lower screenings for cancer. When they are diagnosed sometimes the cancer is in its later stages. Cancer has surpassed heart attacks in being the number one killer in the Hispanic Latino population. Access for quality and timely care are a few of the challenges when it comes to treatment and screening for Latinos. Health care as we know it is an important topic in our society but it can literally save your life or your pocket. No one really expects to get diagnosed with a disease. It happens though and you can’t be too prepared when it comes to your health. Lets face it health care is expensive, can you imagine being told you need an organ transplant and you have no health insurance. According to St. Jude’s Children’s Research Hospital “Although hepatocellular carcinoma is the most common solid-organ tumor worldwide with at least 1 million new cases diagnosed annually, it is very rare in children. Hepatocellular Carcinoma has an incidence of 0.7 per 1 million children and less than 1percent of hepatocellular carcinomas occur in patients before the age of 20 with the average age of onset between 12 and 14 years of age.”

Don't let a diagnosis define you or your life. Most of the stories that I came across during my brother's journey were of people that wanted to live and persevere. If you possess a type of attitude in which you tend to give up this will get you no where. In my experience working in the field of Psychology a diagnosis can make people feel ashamed and alone. It is also very discouraging to have people identify you by your diagnosis and not by your name or personality. Rather than waste your time with self-pity use this time to recreate yourself. I think what makes the most difference in a fast recovery is your perception and attitude. If you perceive your situation to be the worst and drown in that notion it will be impossible to live a happy life. If you fall, dust off those needs and get back up again. Life is a beautiful gift and it is important to recognize that even the worst of experiences helps you grow into the person you are meant to be. Picture provided by http://lucidpractice.com/

Strength and Cancer It didn't ruin us it made us stronger.

What is strength? Strength to me, is waking up every day and no matter the odds as you try your best and move forward. Growing up I was the only girl of 3 siblings. I have two younger brothers and I am 7 years older than my oldest brother, Emmanuel and 11 years older than my youngest, Richard. My brothers are, and will always be, my angels on earth. I've always wanted to set the right example for my brothers and coming from a traditional Hispanic home that means a lot of responsibility. In February of 2013 we got news that would forever change my life, my family and my community. This has been the best example of how courage and faith got us through one of the hardest trials of our lives. My 15-year-old brother was diagnosed with Hepatocellular Carcinoma. What does that mean? It meant that my angel on earth could possibly have a tumor in his liver and could possibly not be with me for important milestones in my life. It meant the most patient, caring, angelic person dearest to my heart could be taken away from me at any time. It meant that I had to share the news with my 12-year-old brother. Let’s rewind a bit to a time before the diagnosis. The diagnosis process seemed like years and I have to share the beginning of it so you can really understand the journey. Emmanuel was diagnosed with eczema when he was a young boy. He always had certain cream he used and we knew he had very delicate skin. He didn't like eggs, didn't eat cereals and was a very picky eater. However, we all adjusted to his food preferences. So when he started having symptoms late in December of 2012 (two months before his diagnosis) of itchiness and sleep loss we would of never associated it with cancer. Emmanuel would come home and do homework like a normal 15-year-old. He started to look tired and really started itching more than usual. Remember I mentioned eczema? Well Manny became overly itchy to the point where he could not sleep. I bought so many anti-itch creams thinking it was from the eczema. They would help but he would continue to itch. At this point we became worried and my mom took him in to the doctor. We immediately began to notice his skin and eyes were turning yellow. After our family doctor saw Manny, he immediately sent my brother to Albany Medical Center for a series of tests. We really had no idea what was about to happen.

Too many thoughts were going through our heads and the waiting process for his diagnosis was terrifying. It took the doctors about 3 weeks to really pinpoint the problem. These were the longest weeks of our lives. After the CT scan the doctors were able to see the mass in my brother's liver. The next step was the biopsy. The day of his biopsy we were briefed about the biopsy and asked if we wanted to donate extra cells for research and we agreed. I think any parent would be devastated to hear any of their children is sick. Parents panic if their children have a small cold. Imagine having your child diagnosed with Hepatocellular Carcinoma aka liver cancer? He hasn't even fully gone through puberty, hasn’t had any girlfriends, or even managed to play all the video games in the world. I could not believe that this was happening to him. Cancer in the liver? How could a child of his age develop this? Manny doesn't drink. The day of the diagnosis was unbearable as we waited from 8 am until 4 that afternoon. The two oncologists wanted to give the diagnosis in front of Manny. My mother didn't want them to but he was going to know eventually. The oncologists proceeded to tell my brother and then wanted to speak to us in private. Their suspicions were confirmed. My mother began to cry like someone stabbed her in the heart and her cries echoed through the Oncology unit. This was probably one of the saddest days of my life. I can't imagine what she was feeling but my heart physically ached. Once my mother and I composed ourselves, we went back into the room. Emmanuel was sitting on the bed. He was quiet as always and I could not imagine what he was thinking. All we knew was that this would be a long battle but we would all be fighting it together.

We sometimes cried when he was not around but we never let him see us cry. When the patient sees everyone worried about his life at every minute, this scares him. We wanted to try to make his life as normal as possible and we tried our best. Sometimes we spent days and nights in the hospital and friends and family would come visit. It was important to know that we were not alone. When my brother was diagnosed with Hepatocellular Carcinoma we knew the diagnosis came with a treatment plan. Emmanuel went through 6 weeks of chemotherapy. At first we did not know what to expect. We feared he would be too weak to interact with us. Would he lose a lot of weight? Was he going to feel weak and sleepy all of the time? These were all questions we asked ourselves. Manny was afraid of losing his hair like a normal teenager would. He feared not being able to go to places he enjoyed prior to his diagnosis. Manny is a big gamer so places like Dave and Busters, movie theaters and malls were places we had to stay away from. His white blood cell counts were a huge concern for doctors and they wanted Manny to basically stay out of public places. We stayed home all the time and that was very hard for a 15-year-old. The first round of the chemotherapy did make him nauseous and irritable, all symptoms we were not used to. The first time he threw up I remember I was sitting in the kitchen and my heart sank as I contemplated what was ahead of us. But for some reason, my mom managed to keep her composure and she was solid as a rock. She didn't make a big deal out of these things. My mother was the reason we all had so much faith in his recovery. She started her own experiments with foods to make sure my brother was as healthy as possible. Most importantly, she made sure Manny's weight did not drop. My mom would say, "If he eats, I am happy." I guess this was her way of coping with the disease. My brother has always been very slim and tall, so it was a priority to maintain his weight.

Emmanuel continued his studies throughout his treatment. He would do homework for five hours to make sure he didn’t fall behind in school. His school and our community were with us the entire time. They knew he was sick but still treated him with delicacy and they had much respect for his intelligence. Emmanuel did not struggle too much keeping straight A’s; the support from his teachers and classmates made a huge difference. He was admired by peers and teachers for his respectful conduct as well as his intelligence. We were so fortunate to have a team of all-stars right there with us. We will forever be thankful for these people. Throughout Emmanuel's treatment he showed the heart of a warrior. He did not cry or show he was worried; he always had faith in his recovery. It was difficult for our younger brother Richard because he would ask questions about cancer and it was hard to explain what was going on. Richard was 12 around the time Emmanuel was diagnosed and he would ask questions like, "Does cancer mean you are going to die?" Manny would give him all of the statistics and treatment run downs. Emmanuel's tumor was not malignant, the doctors explained at the time of his diagnosis. We were also lucky it was detected sooner rather than later. The doctors said the tumor was the size of a melon. What? The fear the doctors had was not being able to reduce the tumor enough to operate. Their main goal was to reduce the tumor enough so that it was safe to go in and surgically remove it. During his treatment we had moments where we doubted the treatment process. We wondered if the chemo was preventing the tumor from spreading and this was stressful for us. We were willing to do whatever it took to make sure my brother had a chance to live!

After six weeks of chemotherapy it was time for Emmanuel's surgery. My mom, dad and a close family friend joined us the day of the surgery. We were very nervous, but deep down we knew the surgery was going to be successful. The wait was nerve wracking but and half way through the procedure, a staff member from the hospital told us they were able to remove the ENTIRE tumor and the surgery was going well. I couldn't hold back my tears of joy knowing that he was going to be cancer free! It was truly an emotional day but there was light at the end of the tunnel. After a rough 6 weeks, to find out that the treatment was effective, was an amazing feeling. Emmanuel has been in remission for 9 months now and we will never forget what he went through with Hepatocellular Carcinoma. However, we are much stronger because of this experience and are glad to have the amazing people around us. Support is a huge part of this journey and without our friends and family we would have felt alone and hopeless. Emmanuel is a fighter and has the spirit of a lion and I could not be prouder of my brother.

Emmanuel’s testimony “ If you fall behind, run faster. Never give up, never surrender, and rise up against the odds” -Jesse Jackson Throughout mid January to mid February 2013, I noticed that I was feeling very itchy and I was taking on a yellowish skin tone. I was also very tired. I thought that maybe it was just eczema because I've had a history with the skin condition. However, it was starting to worry me so I talked with my parents so that we could see the doctor. The doctor ordered me to have an ultrasound and a CT scan. However, the results appeared to show that I had a tumor in my liver. It was roughly 9 cm x 9 cm, which is pretty big. I was diagnosed with liver cancer in March 2013 at Albany Medical Center. I was 15 at the time. I was mostly worried about how the situation was going to affect my everyday life. For treatment I had to take chemotherapy 4 times, and then once I finished the treatment, I had to talk with my doctor about a surgical procedure to remove the tumor. Since the chemotherapy would greatly compromise my immune system, I didn't return to school for the rest of the year. However, I did receive tutoring at home and worked on my schoolwork. On May 7th, 2013, I had the surgery. Fortunately, the tumor was completely removed, and I spent 10 days recovering in the hospital. After the time that I spent in the hospital, I went back home to try to slowly return to my normal life. Although the first few weeks were a little painful, I slowly and steadily began getting used to my normal lifestyle. Even though this experience has been long and put me through a very difficult obstacle, I have managed to power through it. Throughout this time, many doctors and nurses at Albany Medical Center took care of me and did everything in their power to help me. I also got to meet the Romanos, who were such an incredible family. I also had the support of my wonderful family and friends who gave me the hope and courage to keep on fighting. I want to thank everyone who has helped me along the way, these people are the bravest and nicest people I have ever met. And lastly, I want to thank you for taking some time to read this, and to see this as a story of hope and perseverance.