Never All Better
Photo by Emily D Photography
Rethink is honoured to be the guest editor for Wildfire Magazine’s MBC: Young and Stage IV October issue, which is dedicated to highlighting the voices of those with Metastatic Breast Cancer.
Here is Adriana’s story.
Looking at me you would never know I have Stage 4 breast cancer that has metastasized to my brain. I have been living with breast cancer for five years, four of them as Stage 4—incurable. Right now, I look like everyone else; my cancer is invisible. On the outside, I have gotten a piece of myself back. When I look in the mirror and see Adriana, it feels good because at one point, I wasn’t sure I was going to see her again. I know I don’t look sick but I AM. I am terminally ill.
What people don’t see is that every single day I wake up in pain. For me, having Metastatic Breast Cancer is invisible on the outside, despite being very present on the inside. Unfortunately, I feel there is not enough education out there on what living with a terminal diagnosis looks like, except what the ending looks like. With some treatments, the residual struggles are invisible, too. I now have arthritis in so many parts of my body. Brain radiation and a craniotomy means I now have short-term memory loss. Recently, I had breast reconstruction which has at least given me back a sense of myself in exchange for even more scars—this time physical. All of this has greatly impacted my mental health. Every pain leaves me paralyzed with fear and anxiety that my cancer has spread again.
When you have an incurable disease, treatments are to keep you alive longer vs. make you all better. They start off as less aggressive and over time, can stop working. We move from treatment to treatment hoping they work for a longer period of time. They get harder and harder until there are simply no more options.
I had a very aggressive treatment plan when I was first diagnosed. With it came weight gain from steroids, hair loss, physical sickness and the need to sleep all the time. I was facing surgery after surgery, complications with a blood clot inside my heart and feeling a big sense of loss and disfigurement after having a bilateral mastectomy at 35. When I looked as sick on the outside, the abundance of support flowed both medically and personally.
Now, the world forgets just how sick I am. I have had comments thrown my way that hurt so much like, ‘Now that she’s better, she doesn’t need anyone’ and ‘She acts like she isn’t sick’ or ‘She must be better, she doesn’t look sick.’ Yet, every day I wake up facing the reality that I am going to die from cancer. I have had to find a way of learning to live with this. I have struggled so much getting the proper medical support to help me deal with this. Sometimes, I want to scream “I AM SICK”. I want the sympathy, the help, the hugs. I want the world to know how hard I work at just living every single day. During all of this, I have lost people who meant a lot to me, but I have also gained some amazing friendships. The people in my life who helped me so much and the support I do have, I wouldn’t trade for the world. I know that my children will be taken care of and loved when the time comes.
The part that hurts most is that no matter how well I look, my kids have never had the chance to forget how sick their mom is as they were so young when I was diagnosed (at 1, 2, and 5). Most days I have to take naps to help me get through my day. To my children, this is a reminder their mom isn’t well. Recently, I had a migraine that made me physically sick, and unable to stand. My youngest kept coming to check on me. At one point he said, “Mommy I’m scared. I’m scared you are going to die because you are sick.” A headache to any other kid would just be that, but to mine, it’s the fear of losing their mother. My children also have to be my memory at times; at other times, they help me find my words when I am speaking. At such a young age they have been the most support in my everyday life, and to them, no matter how well I look, they live with the fear of losing me every single day.
But you wouldn’t know all of this because I always have a smile on my face. I’m always with my kids enjoying every moment I can with them, pushing myself to continue to do the things that make my children and me happy.
All my life, I believed people who have cancer looked unwell. I thought that living with terminal cancer meant you would surely look sick, be bedridden and unable to continue with everyday life. Boy was I wrong. – By Adriana Capozzi
Click here to read more stories from Wildfire Magazine’s MBC: Young and Stage IV issue.