Jak 2 Mutation in Me

My bone marrow-blood cancer called Primary Myelofibrosis 'MF' started on a festive Cinco de Mayo 2015. It was a normal typical work day for me and all of the sudden, without a warning nor a sign I started to feel sick. I felt so weak, so out of balance and breathing was very difficult, so quickly, that I almost collapse at my desk. I still remembering this incident like it was yesterday. Out of the blue while working I started sweating all over my body, followed by an intense pain in my lower back and a very severe discomfort on my upper abdomen that forced me to leave work and go home. At that moment I knew I was struggling health wise, but for me was, perhaps, a food poisoning reaction or something like that.

I had been a healthy person all my life, so I could not imagine what was coming my way moving forward in my life. Following this scary episode I was rushed, by my husband, to ER. When I got to the hospital I was not able to walk, to think straight, even holding my cell phone was a challenge for me. I was admitted right away due to the fact 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 stabilized my medical condition. After a week I was released from the hospital and started what I called ‘My Health Crisis Journey’.

Following this health episode I started to see an Oncologist/Hematologist on a regular basis. So, after a year and a half of trying with new treatments and not able to target the caused of my health complications and deterioration the team of Oncologist/Hematologist 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 MPN_Myelofibrosis.

The beginning of this health crisis of mine was very painful not only physically but mentally as well. It did impacted not only me, but my family very badly. My husband got so overwhelm he even lost his job. With me forced to resign my job and my husband loosing his we struggled financially. But you know what? It was okay, and we manage together as a family, but having him by my side every step of the way was more important, something that money can’t buy. On the other hand, my daughter, she was only 14 and she felt she was loosing her mom. She reached rock bottom not only emotionally but academically.

Today I can say, joyfully, my daughter now 22 years old is a successful college student attending a State University and currently in her Senior year. And without a doubt I can say; “I’m going to be in the front row at her 2024 College Graduation.”

We all did visited a Psychiatrist and had a few Mental Counseling in order to help us individually and as a family, to cope with this unexpected health crisis, and to help us with the healing and moving forward process. Our daughter once said; “We are a family, no one is left behind.”

The impact of this bone marrow-blood cancer in my life was severe, there’s not comparison. At first I felt my life was falling apart. Me out of all people. I used to donate blood, today I am on the other side of the chair. My driver’s license even says ‘I am an Organ Donor’. Slowly, but truly I started to accept the fact that I suffered from a ‘Rare Chronic Blood Disorder’.

At the beginning of this health crisis I didn’t know what was there for me and my life expectancy was unclear. There were so many gray areas about this rare chronic bone marrow-blood cancer that I made a priority to move forward against all odds. Sharing my story is very important to me. If can bring light, hope, support to other MPN patients and/or cancer awareness in general then my mission 'my calling' is accomplished. My Myeolofibrosis journey started 8 years ago, and today I'm stable.

During one of my hospital admissions I thought to myself, I have 2 options in front of me; "Either I feel sorry for myself and do nothing about it, or go out there and make a difference." I chose the second one. So I became proactive and took advantage of all the opportunities that came my way; to use my skills, my strengths, my professional experience, knowledge and testimony as my platform.

Sharing my story is very important to me; it is also my way of telling other patients out there ‘You’re not alone’; and a way for me to tell the world out loud talking about C.A.N.C.E.R doesn’t make me a victim neither a weak person, on the contrary, it gives me strength. Myelofibrosis is a small group, but our voice can make a big difference.

I am a truly believer everyday you learn something new. “I may know something you don’t, and you may know something I don’t.”

“ME with a Purpose.”Using all my skills as my MPN Platform

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