When You Don't Fit the Description

I haven’t met anyone yet who was prepared to hear the words, “you have cancer.” I remember the day I was given the diagnosis of peritoneal mesothelioma. At 21 years old, and a new mom, cancer was not in my plans. I know you may be thinking about what led me to this point. Well, during my pregnancy a fibroid tumor was found in my abdomen, during an ultrasound. “No big deal, especially being a woman of color, fibroids are common,” is what I was told. In the back of my mind, I knew something was going on but wasn’t sure what it was. This being my first pregnancy, I didn’t know what to expect as far as symptoms. I experienced nausea, extreme fatigue, pale skin, and stomach pains. Later, it I was concluded that I had anemia, and was instructed to take iron pills. At one point I was taking at least 3 or 4 a day—oh the constipation of it all.

After I had given birth to my son, I was soon prescribed birth control to help aid in the decrease of the fibroid. The birth control didn’t do the job and the tumor got larger, the size of a ping pong ball. The day that I found out that surgery was the next option, fear of the unknown was all I could think about. I did ask if the tumor could be cancer, but my surgeon was confident it wasn’t, and he just wanted to take precautions. When you think of “tumor,” cancer is often paired with it. So many things were running through my head and cancer was one of them.

What Is Mesothelioma?

The term peritoneal mesothelioma was foreign to me. I knew nothing about this type of rare cancer and barely knew how to pronounce it. I remembered hearing about it in the lawyer commercials, but I didn’t fit the descriptions of the patients they would broadcast on television. Did I mention that this happened in 2007, so Google wasn’t as relevant as it is today? This meant that there was not a lot of information about mesothelioma on the internet.

Mesothelioma is a rare form of cancer caused by asbestos exposure. Asbestos is a harsh chemical found in various materials that when ingested or inhaled turns into cancer affecting your lungs, abdomen, and even sometimes your heart. Most commonly, patients with mesothelioma have pleural mesothelioma, which is in the lungs. This made my case even more rare because peritoneal isn’t as common as the pleural type. Women don’t even make up half of the patients diagnosed with this disease. The little information we found out about this cancer was bad. I mean bad news with a poor prognosis of an 18-month lifespan. Talk about going into shock mode, I did! None of the patient descriptions came close to me. They were mostly older white males in their late 60s or early 70s, who had been exposed to asbestos from their workplace, 20-plus years beforehand. Here I am, a young woman of color who hadn’t even started her career yet and didn’t tick the boxes. I clearly didn’t fit the description. I experienced the feeling of being in limbo because my oncologist wanted to watch and wait. I felt as if he was watching and waiting for the “end.” (You know what the end means.) I knew that there was more to my life than watching and waiting for cancer to take me out. I gathered the little hope and ounce of faith I had, and I was determined to find out more about mesothelioma and the best treatment options available to me. For me, I didn’t accept the prognosis that was given to me of having 18 months to live.

Finding the Right Doctor

When you are hit with a cancer diagnosis it seems as if someone turns the lights off and you’re in the dark alone. It’s hard to find your way out, but if you focus on that little light, which for me was my hope, the light will get closer and closer and closer. Can you believe that I found the doctor I was looking for in my hometown? He was right in my backyard and specialized in successfully treating peritoneal mesothelioma and other stomach cancers. The day is still vivid to me, sitting in the exam room with shaky legs nervousness on 100 not knowing what he was going to tell me. I was on edge, but I still had hope, plus my crazy faith was activated! When he told me that I was the perfect candidate for this surgery given my age and good health report, I could have jumped off the exam table. Regardless of it being a 10-hour invasive surgery that included heated chemotherapy, I had no doubts about it. Choosing this surgery as my plan of treatment was life-changing for the better. So, 16 years, and four children later, I have been coined as a walking miracle, and one of his most successful patients.

My Encouragement for You

From my experience of having a rare form of cancer, I have learned that even though you may not fit the description, that doesn’t mean it can’t happen to you. Although mesothelioma may be categorized as an “old man” disease, young women of color can get it too. This also doesn’t mean that just because you may not fit the description that your diagnosis shouldn’t be taken seriously. So many lessons that I have learned during my journey with cancer, maybe too many to list. One that I am very passionate about is being my own advocate. Learning to not give up on myself, my family, or the situation at hand no matter how bad things may look.

What an eye-opening experience that has taught me so much about myself, patient advocacy, and ways to navigate through the healthcare system to get what you need. Just to think if I had given up and taken the bad news and did nothing about it, where would I be?

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