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Stage IV: My MBC Journey

by Tameka JohnsonPatient, Metastatic Breast CancerNovember 14, 2022View more posts from Tameka Johnson

It had been a long day of work and coaching my cheer team when I finally got home. The day had been extremely draining and I was in a lot of pain. This pain had been a constant throbbing in my left shoulder, but this day was different because I could barely move my arm. I was truly concerned because this was something that I had never experienced before, especially for this long. So, I contacted my oncologists, who sent me for a PET CT that identified a few nodules in my left lung and a spot on my clavicle. What was concerning for me was that those same nodules appeared on my scans about two years prior and my oncologist told me not to worry about them because everyone gets nodules on their lungs every now and again. I trusted him as a professional and did not question his response to me. That turned out to be a mistake. After a bone scan and a failed lung biopsy, my oncologist just sent me chemo pills and told me that it didn’t matter if I got a second opinion because my options still would change, so I decided to change my oncologist and treatment team. I needed something different. It was finally confirmed through a bone biopsy that my breast cancer was now Stage IV.

Being in remission for three years and hearing the news that I was now metastatic was devastating. Although remission is not where our cancer journey ends, I thought I had closed the chapter of the most difficult part: the fight. In 2017, I began a new journey and a new fight as a Metastatic Breast Cancer (MBC) patient. Being diagnosed with MBC changed the trajectory of my life. I had to retire from teaching and stop working at the age of 36 because my body just was not the same. I would never have envisioned that I would have to retire so young, but life sometimes deals you a hand that you’d never expect. The pain that I was enduring was keeping me from being able to fully perform my daily functions. Because cancer spreads to other areas of your body, you are never the same. I had to come to grips with that and it wasn’t easy.

MBC is the most advanced stage of breast cancer, but it doesn’t have to be an automatic death sentence. Having cancer is scary but being diagnosed with MBC is beyond horrifying because you know one day that your story will come to an end. After being diagnosed with MBC, I decided that my goal was to live my life. I began to see myself and my life differently. I began to do the things that I had once dreamt of doing. Being diagnosed with MBC pushed me to do the things my heart desired and what I am purposed to do. I have finally written and published my first book and I’m traveling to the places I’ve always wanted to go. MBC has shown me more clearly that time waits for no one, so LIVE!

The one thing that I wanted to be different during my MBC diagnosis is that I wanted a team that included me in the decision-making. When I made the decision to go with my current oncologist, that was the main thing I liked about her. She included me and the entire team in the decisions for treatment. She always makes sure that I understand every step of the plan and the type of medications I’ll be receiving. What’s different and unique about treatment and care plans for MBC is that they are constantly changing. Treatment is like a revolving door. I did not realize that when I was initially diagnosed. It’s not as simple as it may seem. That’s why it’s important for our voices to be heard. Being a shared decision-maker in your treatment plan allows you to express your concerns, ask questions, and recommend changes as needed. Don’t just be an onlooker because this is your life and your voice matters!

What’s different about MBC from the earlier stages of breast cancer is that your treatment and physical fight against the disease never ends. We are placed on a drug and when that drug stops working, we must try something different. And because of this our bodies are constantly changing and being affected. That’s why it’s important for me to include a self-care regimen in my routine. This journey can be very taxing. It’s not only your body that’s being strained but also your mind. To be honest, I think that cancer is a battle of the mind more than anything. If you don’t have the mental capacity to fight, then your physical capacity will automatically deteriorate. So, I choose to make sure that my mind, body, and soul are taken care of for me to continue to fight this battle. I do that by participating in yoga, meditation, massages, reiki, reading motivational books, and taking part in other spiritual and healing practices that strengthen those areas. We need to start tending to the deeper parts of our being during hard times. This MBC battle takes a lot out of you. You will use energy and strength that you didn’t even know you had. You must truly love yourself through the journey because times will get rough. But the great thing is that you’re not fighting alone.

One thing I wish I had during my earlier stage battle is the people that I have found in the breast cancer community. Connecting with the Tigerlily Foundation has been one of the greatest parts of this journey. I have found a tribe of people that support, learn from, and love on each other. I really couldn’t ask for anything more. Although strenuous at times, this journey has brought out the greatest parts of me and I’m grateful.

I’m evolving on this journey. I’m practicing mindfulness and living intentionally and on purpose. I am committed to this process and journey. My scars have a story to tell, and I intend to tell it. My scars reveal the evidence of my struggles and serve as proof of my determination to live. My scars are beautiful because the story they tell is so engaging and inspirational. No matter what happens inside my body, I choose to be that evolving soul.

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