Monday, November 16, 2015

The Scary Side of CML; A Tribute to Lauren

Once again, the blood cancer known as CML (chronic mylogenous leukemia) has claimed the life of a beautiful, young and inspiring woman. She fought her battle courageously with humor, grace and optimism. She was a pillar of strength and captured the attention of so many of us, living with CML.

Throughout the battle of her second bone marrow transplant we cheered her on; prayed for her, encouraged her and silently willed CML, and the graft vs host disease to disappear. We believed that she would win the battle, yet feared the battle was just too much; too much for her to overcome.

In the end, Lauren succumbed to this ugly disease; her family said that she gained her wings peacefully and is no longer in pain. For this we are all grateful, despite the fact that we are all a bit lost, a bit angry and yes, even a bit scared.

Every time some one dies from CML, or complications prior to or following, a bone marrow transplant, it is only natural for those of us living with this disease to have questions. We all want to know the details; what happened and what went wrong? How is it possible, when we have the "good" cancer, to die?

There are many answers to this question and the first thing that we all need to realize is that each and every persons' journey is unique. Every single one of us is different; we all have different genetic make ups', lifestyles and other medical conditions which may or may not affect our treatment.

We also need to realize that every one's case of CML is different; some cases of CML are drug resistant; some may have mutations in their disease, and others may be unable to tolerate the TKI's, for one reason or another.

The most important aspects which we are able to control, are excellent medical care and diligent compliance of treatment. I personally have witnessed the loss of life due to poor medical care; to me, this is inexcusable.

I know that when you are first diagnosed, it is like being hit by a train; your mind is reeling and you do not know where to turn, what to do or who to trust. You will likely read conflicting information and receive tons of "advice" from friends and family.

So, what are you able to do; what is in your control?

Education and Choice:

I implore you to become educated; to be your own self advocate, and to choose exceptional medical advice. You need to find a CML specialist that you can relate to and understand, and then, you need to adhere strictly to their treatment plan.

It is your responsibility to choose your oncologist wisely, and to make sure that you not only understand what tests are used to monitor CML, but what they mean, as well.

My oncologist states that the number one reason for CML progression is noncompliance in treatment, especially in his younger patients. He believes that his younger patients do not understand the severity of this disease and that they believe their medications make them feel worse than the CML, so they skip doses or even stop taking their medication all together; often it is too late to reverse the damage and they find themselves facing Blast Crisis and a bone marrow transplant.

So on the heels of yet another loss to CML, stop asking yourself "Will I be next?" and begin asking yourself, "Am I doing everything I can, to the best of my ability, to manage my illness?"

Remember those who have gone before us, and live each and every day with purpose.

Fly high and fly Free, Lauren Wollenberg! You will be remembered, you will be missed and the world, and my life, is richer for having had you in it!

Thank you for sharing your journey, your humor and your inspirations.

Bricks for the Brave!!