The Reality Of Living with Metastatic Cancer

On the outside, I look like a healthy woman. You would never know my struggles.

As I look back to my metastatic diagnosis, I had no knowledge, no insight prior to it. I had bad headaches, which I thought nothing of, attributing it to stress after just having gone through four months of chemo, a bilateral mastectomy, chest radiation and Herceptin treatments. I was still in the thick of it, in a fog. My amazing and caring oncologist sent me for CT scans and x-rays and they all came back clear. I remember her telling me, “I’m glad they are all clear, but we need to know what is causing your headaches so we can help you feel better.”  She sent me for an MRI. I remember that MRI, sitting and laughing with my husband. I had no idea that anything would be found. I was so clueless and in the dark; maybe that’s the best thing ever. The next day I got a call, “Hi Adriana we forgot to book your follow up.” I knew. I knew because I had never had a follow up before during these tests. I remember standing in my hallway, my heart stopping. I didn’t know what they found but it wasn’t going to be good. They told me I could come in that day. My husband had just started a new job and was working without reception so I called his boss in hysterics, telling him I needed him home and that we had to go to the hospital right away.

We sat in the waiting room, I was panicked, and looking back, uneducated. How did I not know my type of cancer (Her2+, ER-, PR-) can spread to my brain? How did I not see this coming? The rest is a blur. We went into a room and they told us. They told us they weren’t sure but it looked to be brain metastasis. November 24th 2015. Exactly 13 months to the day after my original diagnosis.

Two weeks went by, waiting to meet my Radiologist Oncologist, to find out what it was and what we were to do next. I had an MRI again to see if there were changes and we found out there were two lesions on my brain and both had grown. I was scheduled to have targeted radiation starting December 18, 2015.

After all these appointments and treatment I was left alone. This part of my story is the part I hope to help others. I was left alone with my dark thoughts and fear of dying. I was uneducated. No one told me anything. I didn’t know anyone who was metastatic. I did the one thing we all know I shouldn’t have done. I Googled! I Googled and read in every article that I was going to die soon.

It was the holiday season and no one was around. I didn’t know who to reach out to. I remember staying up all night walking from each of my children’s bedrooms, watching them sleep and just crying. I was only 36. My kids were only two, three and six that year. I didn’t want to leave them. I just wanted to hold them and be there for everything. I wasn’t ready to go anywhere. No one told me what was going to happen next. I felt like I wouldn’t wake up one day.

It has been almost three years since that day. I woke up one day and remember thinking, NO WAY!! No way am I going to sleep and cry my time away. I am here now and I am going to live while I am living. I’m going to make memories with my children. I’m going to push through. I am going to educate myself. I am going to surround myself with others like me and I am going to keep going. To me my kids are my world, my strength, my sunshine. When I think my time is shortened by this disease I feel sick to my stomach, paralyzed with fear. Everyday I struggle with how to live, while waiting for the other shoe to drop.

This is life with metastatic cancer. – Adriana Capozzi

The pan-Canadian Pharmaceutical Alliance (pCPA) has agreed to set benchmarks for treatment approvals so that women living with MBC have quicker access to treatments. Women like Adriana need your to help hold decision makers accountable to their promises.

Pledge to be an MBC ally. Sign the pledge today.

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