By Mayra D.
My Primary Myelofibrosis journey started on a festive Cinco de Mayo in 2015 while I was at work. Without any warning, I started to feel sick to the point that I almost collapsed at my desk. I still remember this incident like it was yesterday. I was sweating and had an awful pain in my lower back that kept me out of my chair. I had very severe discomfort in my upper abdomen that was not an ordinary stomach pain. At that moment I knew I was struggling health-wise. I was feeling so weak and so out of balance, things I had never felt or experienced before in my life. After this scary episode, I was rushed to the ER. When I got to the hospital, I was not able to walk, and breathing was very difficult. Even holding my cell phone was a challenge. I was admitted right away due to the fact that my hemoglobin was very low among other things. After a bunch of blood transfusions, IV treatments, and everything in between, the doctors were able to stabilize my condition. After a week I was released from the hospital and started what I called ‘My Health Crisis Path’.
I started to see an Oncologist/Hematologist on a regular basis. One year later, I was rushed to the ER once again. At first the doctors thought I was pre-menopausal and that was the cause of the anemia. No, it wasn’t! The severe night sweats, the awful skin itching, especially after taking a shower, the painful feet, and leg cramps at night while in bed, and the severe anemia, were all part of a few of the new symptoms I was experiencing. Overall, my health was not improving, and I was feeling weaker every day. After a year and a half of trying new treatments with no diagnosis, the Oncologist/Hematologist team decided that the next step for me was a bone marrow biopsy. Everything became crystal clear with my ‘Jak 2 Mutation’ and the finding of Primary Myelofibrosis (MF).
This health crisis of mine impacted me and my entire family. My husband got so overwhelmed he even lost his job. I was forced to resign from my job and my husband losing his caused a great struggle financially. It was okay, and we managed together as a family, but having him by my side every step of the way was more important and something money can’t buy.
On the other hand, my daughter, who was only 14, felt like she was losing her mom. She reached rock bottom not only emotionally but academically. Today I can say joyfully my daughter is now 21 years old and is a successful college student attending a State University. Through all of this, we saw a psychiatrist and had a few counseling sessions in order to help us individually and as a family cope with this unexpected health crisis. It has helped us with the healing and moving forward process. Our daughter once said: “We are a family no one left behind.”
I used to donate blood and today I am on the other side of the chair. My driver’s license even says that I am an organ donor. Slowly but surely, I started to accept the fact that I suffered from a rare chronic blood disorder. I had two options in front of me, either feel sorry for myself and do nothing about it or go out there and make a difference. I chose the second option. It was not an easy task. In the beginning, I felt alone and confused, and I didn’t know where to go for help, support, and answers. When I heard the word ‘cancer’ for the first time it was a feeling I can’t explain. But this didn’t stop me.
Being a former graphic designer, I was used to putting on a creative hat, so I knew what to do next. I began by researching about MPN in general. In the process, I came up with what I called ‘My 4 Daily Elements’: Chemo-Tablet Treatment, Anti-Inflammatory Nutritional Meal Plan, Routine of Exercise, and Mindfulness (I want to point out that when I started this health journey there was not much guidance like there is today). A few years ago, I received a couple of certificates in Modeling and Acting from a local school, so I decided to take advantage and use these tools. This knowledge and experience are my platform for cancer awareness. Today I’m proud to say I’m a member of a Cancer Support Community at the cancer institute in Orlando, FL. I’m also a member of MPN groups on social media. I was interviewed a couple of years ago and an article of my journey was published in Prevention Magazine. What an honor it was being able to speak about this rare and chronic blood disorder. We may be a small group, but our voices can make a big difference.
I am also the voice in the Latino community. I spoke on a local radio station where I was able to bring awareness to Central Florida. In my message I let the listeners understand that talking about cancer doesn’t make you a victim or a weak person, it makes us stronger by informing others. I even asked one of the CSC-Mental Health Therapist to join me for another live radio chat so we could talk about integrative medicine and what it offers the cancer community.
Next month, I’m going to attend my first meeting as part of the Patient and Family Advisory Council at Orlando Health. In December I’m also going to be participating in the Sea World 3 Mile Reindeer Run for pediatric cancer and bone marrow transplant programs at AdventHealth for the second year. Sharing my story is very important to me. If I can shed light, hope, and support to others then my mission is accomplished. “ME with a Purpose.”