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.





12 comments:

  1. I'm so sorry to hear about Lauren's battle ending this way. CML is scary and its stories like this that make me do everything I can to manage my treatment effectively. Again, very sorry to hear this news.

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  2. I am so sorry to hear this awful news! There isn't a day that passes when I don't think of all my friends who have sadly lost their battle. I always to myself what did I do differently to survive.
    Very sorry to hear this news, may she rest peacefully.xxx
    ASpoonFULLOfSugar
    Elisha x

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    1. Elisha,
      I know exactly what you mean......I guess that we are just lucky? Or maybe we have yet to fulfill our purpose.

      It is always sad to lose one of our own....

      Blessings,
      Michele

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  3. Lauren was an amazing soul, she was my HERO! I am her older brother. I was able to spend some time with Lauren before she left us; Lauren was intubated and was in a coma state but you can still feel her positive vibes and great warmth she gave off. Lauren loved life, one of the things she would say was "Don't sweat the small stuff", someone that fought the good fight for nine years lived her life like she had nothing wrong with hers. Lauren was CML free when she past so the way I look at it she won and he did one hell of a job doing it! Lauren will always be looking down on all of her love ones but also all of the fighters and survivors. We love you and will Miss you, but like I said when I had to go back home, I will see you later! Catch you on the flip side girl! Love you!

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  4. Brent,
    Thank you so much for sharing! Lauren had a way of touching us all!
    It is difficult losing a sibling; I lost one of mine. So glad you were able to spend some time with her before she flew the coop!

    All that knew her, loved her!
    Michele

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  5. I am Lauren's older brother and she was the youngest child. I was able to live with Lauren after her transplant and until her final days here. If there was one thing to say about Lauren is that she was determined. I took Lauren into the hospital when she had discovered bad bruising on her legs when we took her into the hospital because of her worries about her leg bruises. The ER Dr came back with no bed side manner as we were previously laughing and making ourselves feel good as we always did when we were together. The words LEUKEMIA stopped us in our tracks. Lauren was then transported to University of Chicago. I was a mess until Lauren and family calmed me down that this was something treatable. She had her first transplant from my sister who was a 100 percent match. I don't remember having to much to deal with after her first transplant. She lived my sisters but I don't remember there being any complications and life moved on. When she her cells started getting bad about maybe 6 or so years later, lauren's dr said that it was moving into the blast phase and she needed to do another stem cell. Up to this point I l know Lauren had I think taken experimental meds and she never took glevic, I know she asked to take those but the dr said not yet when she had such a perfect match as a bone marrow transplant. She agreed to go through another stem cell with my sister. It took, until later the GVHD came about. Lauren was never to much a complainer. She would complain about things but never really about how she felt. My mother may be able to add more to this. I felt Lauren was good for many of the months after her transplant. From what I understand the prednisone made her very up and down at times which I didn't know. Lauren could just be a pistol at times. The GVHD started to attack her body in every which way. I was always told this was part of it and very treatable. Well I from what I understand it became a bad case and after about 2 weeks or more in the ICU, Lauren's body decided she didn't want to deal with it anymore. Lauren was cancer free and would always reach out to people who had cancer and comfort them. Hell she comforted me. She was my sweet BB. I don't post this to scare anyone. I was with her most her days. She was good. She just took a turn with the GVHD. Lauren was always positive about everything and definitely loved to tell you what was up. She was full of love and light and I hope she can be beacon that people can look to when struggling with cancer. I will never forget how strong she was, and how strong she was in her weakest moments. We are all here for you CML WARRIORS.

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    1. Hi Keith,
      So nice of you to take the time to stop by my blog and tell us a little more about Lauren; what a warrior she was!
      She was so full of life and I so easily related to her quirky sense of humor. I still can scarecly believe that she is gone.
      I lost a young sister, (7 years old), when I was only thirteen; the loss, as I am sure you are discovering, never goes away. It is something that we learn to live with, ans accept, but it changes us....I am so sorry that you have joined me in this most undesirable club.
      Please know that you precious sister meant so much to so many of us and that we share in your grief; Lauren will never be forgotten, will always be cherished and will always be a ray of sunshine to me.
      Thanks again, Keith,
      Michele

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    2. She was blessed to have you in her life! She is looking down on us all in no pain. We will all meet again, I am sure of that! She was an inspiration to many and will never be forgotten. God Bless you and your family!

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    3. No more pain. No more bone marrow transplants. No more side effects from medications. She's with her dad who she missed dearly. Thank you for the kind words.

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  6. Keith, how young was Lauren when she left us? She was so beautiful, both inside and out.

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  7. Lauren had an attitude and I loved that about her. She could be really sweet too. It takes attitude to fight cancer.Lauren was taken too soon. She did everything right, That's what hurts the most,but you can never know what will happen. I have lost 2 bothers and 2 sisters. It was hard to let them go but you must. I still remember all the good times that I had with them. I believe I will see them again. Lauren is soaring with the eagles.

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Bricks for the Brave!!