By Kimberly Branche
My myositis journey began in 2017 when my pulmonary doctor referred me to a pulmonary specialist at St. Joseph Hospital in Phoenix. I was having difficulty breathing and there was a five-millimeter (about 1/5 of an inch) nodule on my right lung that the referring doctor wanted to have biopsied. The specialist scheduled a series of tests: pulmonary function test, complete blood work, EKG, MRI, and CT scans of my chest.
The results showed that I was vitamin D deficient and Anti-Jo-1 antibody positive. I was also diagnosed with interstitial lung disease, polymyositis, and antisynthetase syndrome. My lab results were off the charts, which explained why I was always fatigued and in so much physical pain. Suddenly the focus was no longer the nodule but everything else they discovered. I remember my pulmonologist being very concerned. I could hear it in his voice as he repeated the plan of action with my husband and me.
Part of that plan was to start me on oxygen every night with a portable machine set up by my bed. I was having nocturnal hypoxia, a drop in oxygen levels in my blood when I was sleeping. I was overwhelmed at times, especially when an IV treatment my doctors ordered was denied by my insurance. Other options were prescribed, including steroids and other medications to decrease inflammation in my muscles and lungs.
I also saw a GI doctor, because my liver enzymes were extremely high. I had a liver biopsy to make sure there were no issues there. Only years later did I realize this was caused by myositis. I was also referred to see a cardiologist that I see regularly.
During this time, I began researching myositis. I found The Myositis Association and the Women of Color Affinity Group. I joined TMA immediately, because I needed to understand what I was going through and communicate with other women who were navigating what I was now walking into.
I didn’t understand the disease at all or the seriousness of it. As I listened to the women share their journey with myositis, the ups and downs and what to look for, I realized how serious this was and that I needed to become my own advocate. Then I remembered the concern in my doctor’s voice. I was already navigating other autoimmune illnesses and praying that a cancer diagnosis remained dormant. I figured nothing could be more life altering than cancer. I was wrong.
The women provided me with support and resources, but most importantly their testimonies gave me hope for a positive outcome. I had to dig deeper in learning about polymyositis, ILD, and how it was affecting my body. Although we all may have the same illness, the outcome is different for each of us. Getting involved with TMA also helped me learn more about the different types of myositis other warriors were navigating.
Up until the summer of 2023 my myositis and ILD were stable and manageable. When it began to shift, my rheumatologist and pulmonologist started working together to get me approved for a drug that would slow down the progress of my ILD. I was approved for Actemra, a weekly injection under the skin of my abdomen. My CellCept dose was also increased, and it worked to slow the progression of my lung disease.
This made me feel better, and I decided to attend the TMA Conference in San Diego that year. I sat in on several workshops on how to manage my myositis and ILD, but the one workshop I wanted to attend the most was “Cancer and Myositis.” This session confirmed that there is a connection between these two diseases.
This realization was especially important to me, because the day after the conference I was scheduled for a bone marrow biopsy. The results showed my plasma cells had increased from 20% to 30% cancerous after 9.5 years. By December, my doctor wanted to do another biopsy, but I declined. By March she insisted. That biopsy showed 66-70% of my plasma cells were cancerous.
In April 2024 I started treatment for multiple myeloma, a type of cancer that affects plasma cells. My doctors were awesome, working together to decide how to handle my current medications. All my medications for my ILD, polymyositis, and some autoimmune issues had to be paused, because they would not work with chemotherapy.
I could not believe this was happening to me. I worried that I would have a flare up of my fibromyalgia and polymyositis. At the time of my diagnosis, I was starting a new job working for Veteran Affairs, launching a book, and running an online business and a women’s empowerment group. I remember thinking to myself how much can one person handle? I decided it was time to pause everything and focus on my health.
I’ve always been an advocate for maintaining one’s mental health and self-care, especially when navigating challenges we face with this disease. I had to do the same for myself. After four rounds of chemotherapy, I was hospitalized for 17 long days in September to receive a stem cell transplant (SCT), which included a high dose of chemotherapy to wipe out any remaining cancer along with all my hair.
In December, I hit 100 days of recovery after the SCT and decided to fundraise and participate in the Multiple Myeloma Walk. I had the support of several TMA warriors. This was also the first time I walked three miles without needing an inhaler or oxygen.
In December I was also released to resume care with my rheumatologist and pulmonologist. Both decided to not have me restart the medication for my polymyositis and ILD. Everything was stable and my labs were normal for the first time in a very long time. Today I am only taking maintenance drugs for multiple myeloma, and everything looks good.
I am reminded that life struggles happen to all of us, but it is what we do with it that matters. 2024 was a year of me slowing down to heal. I see 2025 as my season of rest and reflection. As part of my healing journey, I invited women to share stories that would inspire others to reach deep down inside and utilize the warrior within. In April of 2024 I launched an anthology of those stories called Awaken Your Inner Warrior, which became a best-seller.
We all have the tools to navigate some of the most challenging times in our lives. All we have to do is dig deep and tap into our warrior mentality. Little did I know that I would have to reach for my own inner warrior to keep me moving forward while life kept shifting. Our diagnosis doesn’t define who we are. It’s just a piece of all the things that affect our lives. We ultimately have the last say. I am a myositis and cancer WARRIOR.
Kimberly Branche is a life coach, entrepreneur, advocate, and survivor. Her life is a powerful testimony of resilience, faith, and the strength to rise through adversity.