The Catalyst

Don’t lie down!

Posted by Guest Contributor on February 24, 2016 at 9:00 AM

 

mid_jamie.jpgConversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view. Views represented here may not be those of PhRMA, though they are no less key to a healthy dialogue on issues in health care today.

We’re pleased to host a guest blog from Jamie Pires, a chronic myelogenous leukemia patient and advocate. Hear more about Jamie’s story here.


As children, we fantasize about the fairy tale: great success, fame and, of course, unlimited happiness. As we grow older, reality edges its way into our daily lives, and we start to understand that life is incredibly complicated. 

 

How we act, how we react, how we affect others – these are the keys to who we are. We decide what career we will pursue, we decide whom we wish to spend our lives with, we have children, we invite pets into our lives, and we build a place in the world where we feel comfortable and cared for. This is the fantasy, right? 

I was there. 2001. I was a hard driven career woman, mother and avid biker in the best shape of my life at 40. I had built a life on trial and error, risks, courage and a desire for that comfort zone. The truth is, I would not settle for less than happy. It is not something that I feel badly about; it simply is the way I am. I have a son from my second marriage, and he is the source of my happiness. He is the source of my drive. He is how I understand myself. I had also met a man who made me happy. He came with two boys of his own, and when we joined lives, it became a bit more complicated, but not in an overwhelming way. Just busier, more involved, and more fun for us all. 

It was shortly after we all settled into a new existence that I found out something that would complicate our lives beyond our imagination. I was non-symptomatic, felt fine and still received the kind of diagnosis that you think could never possibly happen to you. I was told that I have CML, chronic myelogenous leukemia, which is a rare form of leukemia, and I was looking at approximately three to five years to live, if I was lucky. 

At that moment, everyone was talking. They were discussing the very limited treatment options, testing and statistics, but I was struggling in a somewhat muffled and hazy place in my own mind. I remember fainting and opening my eyes on the linoleum floor. I remember lying on the table and having bone marrow extracted from what felt like my very soul. I remember screaming, perhaps not so much in pain, although it is terribly painful, but in shock and anger and fear. All I could think about was my 8-year-old son. It was my son’s life and future that drove me to channel the anger into a forward motion. I would take it on. I would do whatever they wanted me to do, endure whatever pain or illness would come and continue to be his mother. 

There is no way to soften it – the early days of my treatment were awful. I had no option but to have Interferon injections daily. I was bedridden with flu-like symptoms that came about an hour after each injection and lasted until a few hours before the next one. I attempted to continue working but just couldn’t manage. My reward for becoming ill was termination. With no income and being so very sick, I started to waver in my belief that things would be ok. We got to the point that we were actually discussing the disposition of my son if I could not fight this disease. It was a tough time for all of us. My husband was scared, my sisters and parents were scared, and in all of this, I hid it from my little boy. I could not imagine him being terrified that each day might be THE day. I just didn’t want him to worry at his age. 

Then everything changed. Several months after my diagnosis, a new medication was released by the FDA. It’s an oral medication that, taken daily, inhibits the mutation that causes Philadelphia Syndrome (Ph+CML). I got a prescription right away. The results were swift, and the response was miraculous. My white counts were in the normal range in a matter of weeks, and the next bone marrow biopsy showed near remission numbers. It only took a few months to achieve what is referred to as MMR or Major Molecular Response. That was nearly 15 years now. 

After three months on this new medication, I went back to full-time work and became involved as a class mom with my son. I went on class trips, chaperoned as much as I could and became the Marching Band Booster Travel Coordinator and President when my son was in high school. I never stopped, and practically no one knew I had leukemia. I didn’t look sick, didn’t act sick and didn’t need to define myself as being sick.

My prognosis has changed quite a bit; now I can look forward to a long and very normal life. Is this the fairy tale? Maybe not the proverbial one, but this is definitely my fairy tale. My son is now 23, and I am putting him through university. His plan is to become a corporate lawyer, and I am doing everything I can to make that happen for him. He is still my drive and the pride of my life. I told him finally about the CML when he was 18. He had no idea. 

When I was diagnosed, there was no one to talk to. Now? We are surviving and learning more about this disease. The achievements in pharmaceutical research and development give us all hope for the ability to manage rare diseases and, perhaps someday, even cure them.

Fatigue is still a daily thing, and it tries very hard to make me lie down. And while there are times that I give in, mostly I just don’t lie down! Don’t let your disease become you or define who you are. Learn to manage it, learn to accept it, and learn to continue moving forward, because life is a forward motion. There is no going back. 

Topics: Rare Diseases, Leukemia, Rare Disease Day

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