Tuesday, May 20, 2014

Turmoil in CML Land; Let’s Turn It into Power

Many people have the good fortune of floating through life footloose and fancy free; I often marvel at this phenomenon and wonder what living life in this manner would be like. As a person living with CML I have come to realize that my journey will never be footloose, or fancy free; granted, there will be times that I will be able to float along on smooth waters, but other times I will sink; with any luck, for the better part of the journey, I will just be able to bob along, on a slow and steady course.

This past week, those of us living with Chronic Myelogenous Leukemia, have experienced a gambit of emotions. We have been exposed to an advertising campaign that falsely claims that CML has been cured and we have been enlightened to the realization that an extremely dangerous, although rare condition, known as Leukemic Meningitis, is a possible complication of CML; for many of us this came as a shock.

Of course, because I am not a stick my head in the sand type person, my mind has been reeling; I am not certain which topic is more disturbing to me, although the “CML has been Cured” probably wins because this campaign was created; it was in someone’s control, someone made the decision to publicly air this campaign, despite the fact that all of us that are cured of CML, have the potential to develop Leukemic Meningitis, not to mention live with all of the other side effects, that affect us daily.

While claiming that CML has been cured put many of us into a rage, the realization of Leukemic Meningitis made many of us fearful; this is understandable. We are a very small group of human beings that share a rare disease; because of the internet we are able to connect. We are able to share our hopes and dreams, our fears and our frustrations.

We are able to offer support and share information. Often we have good news to share, but other times our news is difficult. We lose someone in our community, someone’s disease has accelerated or stopped responding to treatment, or a life threatening complication has developed. All of these things are a reality and I believe that it is normal for them to cause us to visit our own mortality.

When a very small community is faced with two major incidences in a short period of time, it is “normal” to feel confused, frightened and angry. It is ok to reach out to each other with our fears and concerns, and to look to each other for support and comfort, but what we all must remember is that each and every case is different.

Because of the internet we are able to stay connected; we are privy to information that many years ago would have been nearly impossible to get our hands on. Both of these things make us stronger; they give us the opportunity to become an educated and informed patient. The internet allows us to be a part of each other’s journey and gives us strength in numbers.

I hope that we will all continue to band together, and turn the turmoil of the past few weeks into power; power that will enable us to become more educated, more informed and better equipped to fight CML. By sticking together and continuing to voice our opinions, we can help shape the foundation of living with CML, for all of those that will continue to be diagnosed with this disease, in the days to come.

Because of the birth of TKI’s, our community will continue to grow, new information will continue to be discovered and we are all here to witness, and shape the world’s view of chronic myelogenous leukemia.

Blessings to all.

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