A room full of people whisper quietly as music softly plays in the background. Images flash upon a screen revealing a smiling kindergartener sporting a mortar board and tassel. Others appear showing a confident young man speaking to a group of people; a groom holding the hand of his bride; a father reading a story to his son. Over time, glimpses of a young man’s life play out on the screen. That man is Danny Eiler – a vibrant leader, caring pastor, loving husband, nurturing father, and loyal friend. We’ve gathered to celebrate this man but he’s not here – he passed away on Monday, August 25. What remains is a legacy filled with memories of a life well lived, yet one that was cut far too short. That familiar feeling in the pit of my stomach begins to rise, my throat tightens, my eyes begin to sting as tears well up, and as the program begins I am acutely aware of just how much I HATE chronic myeloid leukemia, CML.
It seems a bit ironic that today, less than 24 hours since I sat in that room, we kick off a month of bringing greater awareness to blood cancer – am I not already aware? I find myself wondering what this month will hold; what aspects of CML and blood cancer will be brought to light; and how many new ways the marketing gurus can portray a carefree life with CML afforded by the latest treatments. It all seems so contradictory, so superficial, and certainly not reminiscent of Danny’s experience.*
So what’s awareness about anyway? Does one living with or close to someone with CML need to be reminded? Aren’t we already aware of CML – far too aware, in fact? Wouldn’t we rather focus on something else?
Well, before you answer those questions, think about this –
Blood Cancer Awareness Month is not for us!
The purpose for promoting blood cancer awareness is so the general public and those who know nothing about blood cancer can learn more about this group of diseases, recognize the amazing progress that has been made through medical research, have a better understanding of the realities of blood cancer, and dispel myths and misconceptions that may exist. For those of us in the CML community, it’s an opportunity to share our “reality,” truths if you will, with friends and family, medical professionals, the makers of our treatment drugs, and countless others who need to know just how much CML impacts one’s daily life. Throughout the month, while there is focused attention on blood cancers, we have a great opportunity to create awareness in those outside our community.
As I pondered what awareness means to me, I began to assemble a list of a few things for which I am acutely aware:
- I am acutely aware that even today as we kick off this month of awareness activities, approximately 16 people will be diagnosed with CML in the United States. There will be 16 more tomorrow and the next day, and the next….all throughout the year.
- I am acutely aware that while the majority of those people will see their CML brought under control with treatment, a small portion will not have that experience.
- I am acutely aware that the cost of our CML treatment drugs is unsustainable and many, even WITH insurance coverage and other assistance, are suffering financial ruin as a result.
- I am acutely aware that there is no “GOOD” leukemia.
- I am acutely aware that side effects are an ever present reality that impedes many patient’s daily lives.
- I am acutely aware of the need for drug parity legislation and fair access to oral chemotherapeutic drugs at a national level.
- I am acutely aware that while some may be able to achieve a treatment-free remission and go months – even years without treatment, others will be dependent upon treatment for their lifetime.
- I am acutely aware that quality of life issues are widespread and more attention must be focused on addressing them.
- I am acutely aware that learning about CML and becoming knowledgeable about the disease is imperative for anyone diagnosed.
- I am acutely aware that we aren’t “finished” with CML and that we not only need curative research to continue, we need it to increase.
This list could go on page after page and not even begin to cover all the things our community deals with on a daily basis. You probably have a list of your own. It may seem overwhelming, but together we can bring greater awareness to these and other realities we face every day. To succeed, we must look beyond ourselves and our community and boldly speak up so that those who minimize the life with CML or know nothing about it will know the truth. Yes, great things have happened and will continue to happen for our community, but much work remains.
When I think about CML, I am ACUTELY aware. Are you? If so, share!
To learn more about Danny, visit Danny Eiler Memorial
*Danny’s experience was not typical. The vast majority of individuals diagnosed and living with CML today can anticipate a normal lifespan. Regularly scheduled blood and PCR tests, taking your medications as prescribed, and sharing any out-of-the-ordinary events with your doctor will help you most effectively manage your CML.