My Journey with the Purple Dragon
Living with Leiomyosarcoma, a Rare and Aggressive Cancer
by
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I had never heard of Abadiânia until a couple of weeks ago. I don’t know anyone there and I’m not sure what exactly I will do there, or what will happen. But I am going, flowing with the cascade of events that started… When exactly did it all start? Two weeks ago? Three months ago? A year, twenty-five years or maybe an eternity ago? I truly don’t know.
Where should I start telling this tale? To make some sense, I hope, I will start with the most pertinent and recent events.
November 2012 – The catalyst: an unexpected diagnosis
I usually have my annual exam with my gynecologist in August. But in 2012, I didn’t see my doctor until November. As usual, my mammogram was normal. I reported that my migraines were controlled with treatment; my insomnia was managed with medication and all else seemed fine. The doctor proceeded to do a PAP smear. With the exam complete, I felt an urge to ask:
“Is it part of pre-menopause to have periods which last longer and bloating?”
“How long?” my doctor asked.
I told her between four to five days up to 12 days and that my friends already on menopause say that this type of change is normal.
My doctor gave me an inquisitive look. “Not necessarily. Let’s go to the ultrasound room to take a look.”
The ultrasound reviewed two fibroids – one the size of an orange, the other a lemon. I offered information that my mother and two sisters had so many fibroids in the past that none of them had uteruses anymore. The doctor proceeded to tell me uterine masses were usually benign, but she would like to repeat the ultrasound in one month….
APRIL 23, 2013: And from this day on my life changes forever. I am introduced to The Dragon
I was to have a follow-up two weeks after the surgery, but I get a call to go earlier, six days after the surgery. Hmm, I thought, but again, my family tells me, “There is nothing to be concerned about. You probably got the appointment date wrong.”
John and my sister stay in the waiting room. The nurse takes me in, still walking slowly. I sit and wait. The doctor comes in, seats, asks how I am doing and then…
“Sorry… It was a tumor,” she finally says.
“What?” I ask confused.
“Yes, it was cancer.”
I go instantly numb and the blood leaves my face. I feel strange, like in a fog.
“Which type?” I ask, still is disbelieve.
“The bad, aggressive one,” the doctor replies. “Leiomyosarcoma, a very rare type of cancer.” This is the first time I’ve ever heard of Leiomyosarcoma (LMS), but I know sarcomas are the bad type of cancer to get. I ask about which treatment I should have.
“The only treatment available you already had: surgery. I am sending you to an oncologist for you to be followed and have further tests.”
“If I already had the treatment and it is all out, why do I need further tests and an oncologist?” I ask.
“This type of tumor likes to travel to the lungs and liver, but I took it all out and we caught it early, in stage 1. You have a good chance.”
“Cancer. Travel. No treatment. Chance” My mind spins. I feel clumsy and numb, as if I had just entered a dark room with no exit doors, no windows, no light. It’s cold here, helpless, lifeless, just like me. A tear rolls down my cheek and I plead with the doctor, “Please get my husband and my sister.”
“You’re not going to faint on me are you?” She asks.
I nod and stay still. Time passing very slowly. When they enter the room, I say THE DREADED WORDS for the first time: “I HAVE CANCER. THE BAD TYPE.”
I knew at that moment, my life would never be the same. I passed through a door and entered a new cold space from where there would never be a true exit or way to escape.
Where did my freedom go? Where are my dreams of growing older and of holding my grandkids someday? Where is the healthy body within my thin frame?
Arriving at home, I share the news, monotone. My family is in shock, too, I imagine, but they try to be reassuring for my sake, repeating that I’m going to be fine since the cancer was removed. However, I’m in the medical field, I know too much to be at peace. Uncertainty, uncertainty and more uncertainty lie ahead, and there is nothing I can do about it…
I take to my bed. I don’t want to open my eyes. I don’t want to hear. I don’t want to speak. I don’t want to eat. I don’t want to think, but the scary thoughts keep creeping in, over and over again. The tears roll down constantly as an endless stream.
August 25-28, 2013 – Back home in Gainesville, it’s not easy at first
Back home but I miss Abadiânia so much. It was so much easier to be surrounded by people who “understood” what I am just beginning to understand about true healing, life, and death.
The few friends who know I was in Brazil are curious to know how it was. I give synopsis of what is like there and show pictures, but to understand “it” fully, one must be there and see and feel it all…
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About the Book
Patricia’s world turned upside down when she was accidentally diagnosed with Leiomyosarcoma (LMS), an extremely rare cancer affecting only 1 in 5 million people. LMS is also a very aggressive type of tumor, thus nicknamed the Purple Dragon.
After the initial shock of the diagnosis subsided, Patricia was ready to discover ways to heal herself and find hope. She went from being a counselor to thousands of patients on how to be proactive and take charge of their own health, to taking unknown paths in search of hope for surviving a disease that does not have a single established medical treatment. She embarked on a spiritual journey, which took her to Omega Institute, Bali and Brazil, where she met healers, a guru, a physician and other extraordinary people who became instrumental in her finding peace within and starting to believe that everything can be healed, even the Purple Dragon.
Born in Brazil, Patricia moved to the United States at age 20. She has a Master of Nutrition Science from the University of California, Davis, and has worked as a university professor, researcher, speaker, clinical dietitian and diabetes educator. She is also the proud mother of three children (including an angel in heaven) and the founder of Helping Children Heal (HCH), an NGO that provides medical treatment for impoverished and sick children who don’t have health care. Patricia is a world traveler, having backpacked solo in Tibet, Nepal, Vietnam, Cambodia, Laos, Namibia, India and many other countries.
Above all she is a proactive woman who has been inspiring many as she travels the paths of healing and discoveries, keeping alive the flame of faith that even the Purple Dragon can be tamed.