8/25/2011Long Island, New York
Receiving a life-threatening diagnosis is life-altering. Your mind races between hope and a dark place. For me, it was my family and my friends, my support system, that helped keep me from thinking the worst. My family forced me to be positive every step of the way. Whether you surround yourself with family, friends, or other cancer-survivors, it is very important to have a strong support system in place to help you fight a good fight. Every patient needs someone positive in his or her corner to provide strength and hope.
When I was first diagnosed with leukemia, my sister was my rock and she continued to shine as my number one advocate and care-taker throughout chemo and a bone marrow transplant. She held my hand and shuttled me to and from doctor appointments leading up to hospitalizations. When the doctors said I could only eat home-cooked or pre-packaged food, my sister took to her kitchen and made me all of my childhood favorites. She even went so far as to cook meals for my husband so that he didn’t have to worry about getting food in between work and coming to the hospital. When I wasn’t getting concrete answers from the doctors or I felt like I was falling through the cracks of the system, my sister rose to the occasion and made it clear to everyone that she would bring hell on anyone that did not provide me with the best care. She got me my answers and continues to advocate for my well-being.
My husband and two daughters were incredible throughout my entire year-long battle with chemo and the bone-marrow transplant. My husband would go home only to shower and change before or after work and then he would come and keep me company at the hospital all night-long. He grew accustomed to sleeping in a chair by my bedside. He helped keep my spirits up by participating in hospital date-nights in my room. I’d wear fancy pajamas and we’d watch a DVD or play a game. He helped give me some normalcy.
While I did not want my two daughters to put their lives on hold because of my illness, and they did continue to go to work and school, being with me became a huge priority. At first, my younger daughter was intimidated by the disease and the hospital setting, much like her hospital-shy father, but she rose to the occasion and came back and forth from college to spend weekends doing art projects with me in my room. She’d bring her laptop and we’d play online and her boyfriend would come and play the piano on the floor for anyone to hear. It made me feel great even when I was feeling awful. My older daughter, a teacher in Maryland, traveled back and forth almost every weekend to stay with me and keep me company. She told me inappropriate jokes and she brought coloring books and projects for her classroom. She helped me continue my art hobbies even in the hospital and it gave me something to focus on other than the chemo and all the hospital noises. I watched my daughters mature throughout this experience and they have made me so proud.
Whenever the floor was free of anyone receiving radiation, my pregnant niece would sit with me through chemo. She brought me food and talked to me. When my hair started falling out and I was getting down in the dumps, she whipped out the scissors, braided my hair in pig tails and started to cut. It wasn’t a perfect haircut by any means, but she helped make the loss of hair less traumatic by making jokes and cutting my hair crooked. She also gave me something positive to focus on – a new great baby niece or nephew. She’d send me sonogram pictures while I was getting chemo and I warned every nurse on my floor that I had to live to hold her baby. I did and when he was born, he lit up my world. When I held him for the first time, he certainly gave my heart something to beat for. Throughout my bone marrow transplant hospital stay, my niece would send me text message pictures and videos of my great nephew and she hung poster size photos of him all around my room. I talked to his pictures every night before bed. His smile made me smile.
My parents came and visited every day and they brought me food and held my hand and made me feel safe and secure in a very unsecure situation. My brother-in-law and nephew visited and helped make me smile. My family took such great care of me and they made sure I never felt alone – someone from my family was always on duty to be at the hospital with me. They set up a sort of rotation: husband, niece, sister, mom & dad, cousin, kids, husband again and so on. My friends came throughout the day and stopped in to show support. My sister’s friends dropped off gifts. Old friends popped out of the woodwork and offered to get swabbed. My daughter’s students made me get well cards. My niece and sister decorated my room with inspirational and positive thoughts. My daughter’s made me star charts to help motivate me. My family decorated my room with birthday banners and a tiara on the day I received the bone marrow transplant, the gift of life, my new birthday, and a year later, took me out to celebrate the day I received my transplant. I even had friends that were former cancer patients by my bedside, cheering me on.
I would not have made it and continue to make it through this journey without the positive thoughts and energy put out into the universe by my support system. I am indebted to them for their time, love, and prayer, just as I am indebted to the wonderful doctors and nurses that looked after me and treated my family well too, as well as my beautiful and generous bone marrow donor. With all of their help, I continue to live happily, kicking leukemia’s butt!