Shining Light On One Of The Least Talked About Breast Cancer Issues AiRS Foundation Shines Light on One of Least Talked About Breast Cancer Issues Photo Courtesy of Hope Chest It’s the beginning of October, and as with every year, the month will be dedicated to raising awareness and funds for breast cancer causes. A side to the disease that perhaps gets forgotten in the mix, is what happens after a woman has beaten it, and how their general health and body has been affected. The AiRS foundation, short for Alliance in Reconstructive Surgery, is a non-profit, founded by two successful female entrepreneurs, Janet Denlinger and Morgan Hare. Their work began when they realized how many women, following breast cancer and the mastectomy procedure, could not afford to have reconstructive surgery after beating the disease. “While the treatment of breast cancer has progressed, one third of all breast cancer patients will inevitably have a mastectomy. In addition, more women are being diagnosed with the BRCA gene mutation and will opt for a risk reducing mastectomy. It’s crucial that the medical community help educate and inform patients about their reconstruction options as an integral part of cancer treatment which can lead towards healing emotionally and physically,” says Dr. Rod Rohrich, founder and board member. Below, SWAAY speaks to five women who have been helped by the foundation following their mastectomies, about their journey from diagnosis, to the discovery of the foundation’s work and how they helped with their reconstructions. Heather Allen. Heather M. Allen, Age 36 Under what circumstances did you detect the disease? I found a lump while taking a bath. I didn’t have any symptoms that I knew of at the time. After your diagnosis, please describe your journey in terms of treatment and how it affected you. I had a very hard time with the diagnosis because I had just buried my mother 6 months earlier who died from ovarian cancer. I didn’t know how to process what I was going through, at the same time I had six children at home to take care. I felt as if someone had given me a death sentence because I had no clue how I was going to be a wife, a mother, a homeschooling mom and battle cancer at the same time. Emotionally I was a mess and didn’t know what to do. I had no one in my inner circle I could talk to besides an aunt that had breast cancer 25 years ago before me. The treatments were hard and they made me sick and I was weak all the time. Even though things started out rocky I thank God every day I made it through and am still here to talk about it. Can you talk about any of the emotional side-effects of going through a mastectomy? I felt as if cancer had taken away my ability and right to be a woman. In my eyes women have breasts and when they are gone then what? Will I still be beautiful? Will my husband still love me? Will my children be ashamed? Will people stare at me with disgust? After the surgery emotionally I felt broken, hurt, mad and not beautiful. How did AiRS help you get your reconstructive surgery and how has this changed your life? I was at a crossroads. My insurance didn’t offer anyone that specialized in the field. The only way for me to get the surgery was to pay out of pocket and that was impossible with my family size and only my husband working. I told my doctor if I can’t find help to pay for the surgery then I’m not having the surgery. I found AiRS online and spoke to a woman by the name of Tamara and explained to her my situation and prayed she would be able to help. After a short while I was approved to get help! It’s really hard to explain how getting help from AiRS changed everything without shedding tears. My cancer made all my choices for me and I didn’t have a say so. This was the one thing I wanted to be in control of and because of the financial help from AiRS I was able to feel that I was in control of my outcome, not cancer. Looking back, can you give some advice for people going through similarly difficult circumstances? It’s okay to cry, it’s okay to be angry. You didn’t choose cancer nor did you do anything wrong. It’s not your fault! Having cancer does not mean your life is over it just means you have to fight harder to enjoy it. Giving up is not an option! You’re stronger than you think and you can push through it. There will be hard days, weeks or months but if you fight with everything inside you and never give up you can beat it! You are not alone. Jenna Lynn Trout, Age 31 Under what circumstances did you detect the disease? After I had my baby in 2014, I stopped breastfeeding and I developed mastitis and it lead into chronic subareolar abscesses. My symptoms were hot breasts, lump, and drainage. After your diagnosis, please describe your journey in terms of treatment and how it affected you. I had so many incisions and a lot of drainage. It was very painful, depressing and felt like it was never going to end. I was on antibiotics for about a year along with pain pills. I had to deal with packing and drains over and over till after a year the doctors felt like I had no cure and had to get both my nipples removed. Jenna Lynn Trout. Can you talk about any of the emotional side-effects of going through a mastectomy? After having my partial mastectomy, it was a relief because I had been in pain for a whole year with pus filing in my breasts, it felt hot constantly and was always cut. But the actual emotional part of it was rough because I am so young, it was so unexpected, I didn’t feel like a complete woman and my intimacy went down because I was insecure. How did AiRS help you get your reconstructive surgery and how has this changed your life? The AiRS Foundation completely changed my life! Since my diagnosis was not cancer and I did have a mastectomy, insurance said it was cosmetic. So I hit another low point in my life. I was depressed, discouraged and I felt like I was never going to be fixed. The AiRS Foundation has wonderful support! I was able to get my breast reconstruction and see Vinnie Myers to put on my areola tattoos. I, for once felt wonderful and complete again! Looking back, can you give some advice for people going through similarly difficult circumstances? Looking back on my difficult journey the best advice is to surround yourself with loved ones and talk about it as much as you need to. I’ve realized that when you do finally get the chance to reconstruct and get tattoos you will feel amazing again even though at the time you think it won’t matter. I, in fact, happen to love my tattoos more than my real nipples! Again I am truly blessed to have had the AiRS Foundation along my side. Lydia Amaya Under what circumstances did you detect the disease? I was diagnosed October 19,2015, on a routine visit to my OB. I never detected anything as cancer does not run in my family. I am the youngest of 15 siblings. After your diagnosis, please describe your journey in terms of treatment and how it affected you. As soon as I was diagnosed I had a Port put in for Chemo. I had a great team by the grace of God. I underwent 16 rounds of chemo and 28 rounds of radiation! The damage was done from that moment on, my children live in fear as do I. I can’t so much as cough without my kids fearing the worst. I do my absolute best to look at each day as a new day, without the fear and anxiety. The truth is that I am a woman of faith and rely solely on the Lord above to heal this fear for all of us. Can you talk about any of the emotional side-effects of going through a mastectomy? Initially I thought I was okay with a flat chest! I have been married since the age of 15. My husband insisted on my beauty being deeper than my breasts. As time passed I became angry, even bitter and some might say depressed. I started to hang my head low and walk around as if I was ashamed. The reality was that I missed my female/ feminine curves, my breasts, my body and I hated the fact that I lost them. Eventually I realized I wanted reconstruction so bad. How did AiRS help you get your reconstructive surgery and how has this changed your life? AIRS made it all possible for me. I am a full time mom and I work full time. I have private insurance as well, however my deductible was an extremely large amount. I didn’t think it was going to happen for me until I read about AIRS. I am happy to say that I had my reconstruction because of AIRS support and help on May 30, 2017. Lydia Amaya. Looking back, can you give some advice for people going through similarly difficult circumstances? My advice would be, don’t give up! Get online and do some research. Get information. There are amazing organizations like the AiRS Foundation that are willing to make things possible. My missing piece of the puzzle was completed when AIRS answered the call for help. Sandra Joly, Age 44 Under what circumstances did you detect the disease? I had a lump on my left breast and was not sleeping well, and had a lot of bags under my eyes. After your diagnosis, please describe your journey in terms of treatment and how it affected you. After being diagnosed, I felt as though I was going to die at any moment, and I worried about my 12-year-old daughter being left without a mom, and about my mom and dad being left without their only daughter. It was like if I was living a nightmare and that my beautiful life had come to an end. Cancer affected me emotionally, financially and physically. Sandra Joly. Can you talk about any of the emotional side-effects of going through a mastectomy? The emotional effect of a mastectomy was not as bad physically because I lived. It did affect my self-esteem, but I overcame that by buying a sports bra that had a little cushion, since I used to be a 36 DD my surgeon didn’t leave me completely flat because I had a lot of mass. But the worst was the pain after surgery and having the five drains and open wounds. I healed pretty well because I had my mother taking care of me and of course I also had a nurse that would come to the house. How did AiRS help you get your reconstructive surgery and how has this changed your life? AIRS provided financial support as well as emotional support, and they were there when I most needed them, they paid part of my deductible for my surgery. It was amazing to know that there are people who care and understand, I didn’t feel alone. Looking back, can you give some advice for people going through similarly difficult circumstances? My advice is that life is precious and that everyone that is going through Breast Cancer needs to be strong, and that we need our families, friends, and organizations like AIRS Foundation to ease our pain, in order to focus on healing. Always believe that we are warriors of life. We are survivors, and we need to stay strong in mind, body, and soul and not give up. God gives his best battles to his best warriors. I consider myself very lucky and I want to continue to be on earth. I would do anything in my power to grow old and see my daughter grow, finish middle school, high school graduate from college, get married, have children and all a mother can wish for. I was given a second chance and I’m not letting it go. Amy Corcoran Head of Content at SWAAY: Amy is an Irish writer, avid foodie and feminist with an insatiable appetite for novels and empowering women's writing. She has enjoyed calling Dublin, Paris and now New York her home.