Madelyn’s Story – I Am Not My Illness

When I was first diagnosed with breast cancer, I was flooded with a myriad of emotions. It was just 4 years since I had an emergency tracheal resection that resulted in me having a trach. When I went in for my annual mammogram, I was told that I needed a biopsy. I knew that something was wrong, however, I did not imagine it would be cancer. Unfortunately, it was indeed cancer.  I just froze. It took me a minute to process the news, and frankly, I don’t believe I truly processed it until I was going through chemotherapy a few months later. I remember feeling numb and trying to figure out how to tell my family. I believed that deep down I would be okay, I wanted to just walk in my faith.

February 2019, I underwent a double mastectomy with DIEP flap reconstruction. It took about 14 hours. The surgery was successful, however, the reconstruction had some complications later. I ended up having to have a machine affixed to my breast and waist because the skin died. I had to have a skin graft applied. All this delayed chemotherapy and radiation for 3 months.  During that time, I slept in a recliner because it was difficult to walk or stand up straight. I’m thankful that my mom had just retired and was able to stay with me, my husband, and children. She was a Godsend.

Treatment was challenging. However, radiation truly damaged my skin. It was red, burned, and just painful. I remember being sad and feeling like a burden to my family. I was independent and took care of everyone else and I had to learn (and truly that was difficult) that it was okay to have others take care of me. Mentally it was challenging but physically I just couldn’t do it for myself. I found myself teetering on the verge of depression, but my faith in God truly kept my mind. I had a wonderful experience with my BCRC navigator who was a constant force and reminder in my ear that I was not alone.

I’ve heard people talk of their experience with chemo and radiation, but I didn’t realize that your body and mind is not the same after the diagnosis and treatment. I am forever changed. I had to go on disability retirement from my job of 34 years, which was hard for me. My identity was in my occupation, and I was really good at it! I didn’t know what to do and how to move forward.

BUT GOD! I have found a new way to connect with people and truly live out a full life because of my breast cancer diagnosis. It made me realize that I don’t have to be superwoman. I don’t have to know it all and take care of everyone else. I need my family and friends. I can connect with people on a real level and know that I’m helping them. I thank God for the journey and the opportunities this has given me. I am able to share with women of all ages and stages that life is not over. Yes, it may be different, but there is so much more life to live.

You are not your illness. I am not my illness.  This sucks and it is not fair, but you don’t have to stay there. Every day that I’m alive I look for the good in life and in others. I allow myself to feel the hurt and am reconciling with the changes in my mind and body. I believe that my faith in God has given me strength to get through the tough times. I meditate and focus on what I can do for others. Allow yourself to feel what you feel. Your feelings are valid, but do not allow them to get you stuck! Take one step, one moment at a time. This too shall pass!

BCRC has given me an outlet that is unlike anything I’ve ever experienced. The women there are REAL. They are supportive. They understand and they care, I appreciate the Pink Table Talk, the BCRC support group for Black women with breast cancer.  This is a unique group because in our community, the Black community, we tend to not share. This group is giving a voice and validates a group of women who many times feel marginalized. I appreciate the progress that is being made, especially since this disease is plaguing Black and Brown women at much higher rates. Thank you to BCRC for the opportunity to share and connect. I’ve made some lifelong friends through this group. I can’t wait to see where it continues!

I’m so thankful for my medical oncologist who told me about BCRC.  No words can adequately express what BCRC means to me. My patient navigator was something special. Even now, she connects with me and I reach out to her just to say thank you and that I appreciate her. My journey is not like others and that is okay. All of us will experience differences and we know not to compare our stories. But what BCRC allows is that community to share WITHOUT JUDGEMENT. We can cry. We can laugh. We can connect.

BCRC was a beacon of light during a very dark time in my life. My patient navigator referred me to organizations to help my young daughter understand what was happening to her mom. My diagnosis was difficult for her, and through Wonders and Worries, she truly was helped. Knowing that you are not alone and that there is someone that cares and understand is truly a blessing. I know my family and friends were really trying to help me and listen, but they could only do so much. Having an organization like BCRC filled with women who truly know and understand is tremendously helpful.