By Zulema Arroyo
October 24, 2015
My story began way before I knew my cancer was there. I can look back precisely two years in my medical history when I had symptoms and discomfort and sought medical help to realize I should have asked more questions. I had not yet learned that one should always read ALL medical reports and clinical notes thoroughly.
I learned to read medical records and take charge of my health.
In February 2015, I underwent tumor resection at Memorial Sloan Kettering (MSK) where I was diagnosed with a low grade (Thank God!), Stage 1, very rare, orphan cancer called sarcoma. I had never even heard the word sarcoma before and— luckily—I had never been given such a diagnosis!
Every year, approximately 15,000 new patients are diagnosed with sarcoma in the United States, the majority of which are misdiagnosed (including me), before having access to a sarcoma specialist. Compared to more common cancers, sarcomas have not been extensively investigated. Research is almost non-existent, and the factors responsible for the disease are unknown. Because pharmaceutical companies consider the number of patients extremely low, there is no profit incentive to develop clinical trials or chemo for these patients. The sad news is that, due to the lack of funds to support research, the treatment options are very limited. In other words, there is NO market incentive for drug companies in the United States to develop and test drugs for patients with orphan diseases like sarcoma. The fact is that sarcoma remains one of the deadliest forms of cancer among children and adults.
I learned that cancer isn’t and will never be fair, and it shouldn’t exist.
All of this motivated me to make tough decisions and take control of my health care as much as I could. For better or worse, after several months in the MSK system, I quickly learned that I was really the only one in control. I called the shots, I made the medical decisions and not the doctors. I was forced to become my own advocate.
I read all the medical journals known to man about sarcoma. In addition, I started a private blog to share with a small group of friends and family my every day of this journey. Needless to say, I was overwhelmed, scared and very mad at cancer. It really sucks to have to go through this! But I choose to believe—that in the end— there might be a good reason for everything that happens to us.
I learned how to listen to my gut even more.
Knowing that MSK didn’t have the range of experts in sarcoma that I needed to consult with at the time, I searched for the world’s best sarcoma center. And I found it!
I left New York and went to MD Anderson Cancer Center (MDACC) in Houston, Texas with a one-way ticket. My first stay lasted three weeks and included over 25 medial procedures, four biopsies in other areas of the body and meetings with 20 oncologists. My home became a 250 square foot hotel room. To this day, every oncologist who sees me at MDACC agrees that my very complex medical history, over 12 surgeries, and the sarcoma, makes my case unpredictable. On many occasions, even the chiefs of each division have no answers for me.
I also learned to live with uncertainty.
The ancient art of meditation paid me a visit. I meditated every single day, sometimes twice a day. It is expected that in these cases, anxiety becomes the rule and not the exception to one's life. A feeling I hated! I had very dark and difficult moments, yes, but the love, support and caring of my husband and a great circle of friends carried me through the darkness. I am forever grateful to them!
I am still fighting my own battle with sarcoma,as well as having several chronic autoimmune diseases, including lupus, which is also very rare and has no cure. Being on a weekly low dose of chemo (Methotrexate) has become a part of my routine.
I learned that I am one lucky girl!
I commute to MDACC in Houston from New York regularly for my sarcoma check ups and medical treatment. Houston has become a second home. I have made incredible friends, and we are all united for one reason: hope. Some of my oncologists have become friends too. Am I out of danger? Sadly, not yet because 80% of sarcomas reoccur in the first two years of diagnosis. But every part of my body and spirit hopes to become part of that 20% in remission, with no sarcoma recurrence.
My cancer is low grade. It was caught in time, but because of the location, couldn't be completely removed, I have positive margins. There is always opportunity within tragedy. Sarcoma has given me the chance to help my fellow patients.
Ever since I was diagnosed with this rare disease, I have learned to deal and fight the medical system in our country for my rights as a patient. Anyone that has gone through this knows what I mean!
I learned I could be an agent of change.
I felt compelled to create awareness and pay forward—at the appropriate time—publicly. That time is now. My intention is to turn my story into a positive for this very rare cancer. After all, one can only control one's intentions, never the results…
After months of research, talks with my friends, medical professionals, other sarcoma non-profits and sarcoma and other cancer survivors, I decided to open a foundation for sarcoma awareness and research combined with patient advocacy. I knew I wanted to use art as the main pillar of fundraising. Because we all need beauty in this process…
Artz Cure Sarcoma was born. Proceeds from the first event went directly to the MDACC in Houston and Until 20. The sarcoma investigative research laboratory is lead by Dr. Keila Torres, M.D. Ph.D, Principal Investigator Soft-Tissue Sarcoma research laboratory, a fellow Puerto Rican, young and driven sarcoma surgical oncologist who is trying very hard to find targeted therapies for the disease, as well as its gene mutation. I have visited the actual research lab, met the staff under Dr. Torres guidance, and have spent a lot of time outside of the clinic with Dr. Torres—and other people touched by sarcoma—working arduously to help my fellow patients.
I learned I was not alone.
And then I met Geraldine Moriba. An angel in the most critical milestones of this journey. Geraldine is a sarcoma survivor. She put a face to hope. And on top of that, she is the brain behind Until 20, an independent film created by her.
I hope you will all help me spread the word and raise awareness. Nobody should go through cancer without having options to treatments!
I learned that it is in giving that we receive. I learned that I'm still learning...
Love to all. Health to all.