Friday, June 28, 2019

Low Whites, Reds and Platelets

I am not a doctor, I do not have a medical degree, but what I do have is eight and a half years of experience dealing and living with chronic myelogenous leukemia. I have my own personal knowledge, as well as the observations and conversations from many others living with this disease, oncologists that specialize in CML, and pharmaceutical companies which manufacture the drugs that keep us alive.

Not to mention all of the data and research papers that I have studied throughout my journey.

The topic that has prompted this post is the alarming number of newly diagnosed CML patients that are stating that they have either stopped (temporarily) their treatment or had their TKI dropped to a low dose to combat low "numbers" in their CBC, not to be confused with their PCR test results.

The numbers that most of these people are referring to as "low numbers" are white and red blood cells and platelets.

What confuses and frightens me the most is that this decrease in "numbers" is a common occurrence during the beginning of treatment for CML. Experienced CML specialists know this, and know how to treat the neutropenia, as well as the CML.

There are options, besides stopping treatment, or lowering your TKI to a dangerously low dose of medication; ask about Neupogen injections, transfusions and diet to help stimulate your bone marrow into making the desired amount of white and red cells and platelets; eventually, your body will adjust to your treatment, and your CBC will become stable.

While a Complete Blood Count is important to your overall health, it is not the only test that should weigh into the reduction of your life-saving medication. CML can be a sneaky disease, do not allow it to progress silently into blast crisis due to a medication reduction during the initial treatment or your disease.

It is important to remember that you have cancer. Cancer treatment is difficult on the body, it is difficult to maintain "perfect" health during its' treatment, especially in the beginning stages of treatment.

Expect low numbers in your CBC in the beginning, and pray for low numbers in your PCR. Learn what this means and how lowering your TKI dose prematurely can affect you and your CML.

As I have often stated, seek out a true CML Specialist, not just a haematological oncologist; one that is familiar with low counts in the CBC, one that has experience with many CML patients and knows what to expect, and how to treat you accordingly.

Know that in the beginning, your body has much to adjust to and that eventually, it will become accustomed to the treatment and life and living with this disease will eventually become easier. Know that this is a marathon, not a sprint and that you cannot expect to treat cancer without experiencing side effects and speed bumps.

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Friday, June 14, 2019

How and Why I Became a CML Advocate

Sometimes our song finds us!
I am often asked if I have always been a writer and a healthcare advocate. The answer to that question is an unequivocal no.

Before being diagnosed with chronic myelogenous leukemia in February 2011, I would have never dreamed of writing anything that anyone could possibly read. Prior to diagnoses, I was a constant ball of motion, squeaking every minute out of every day; living my life to the fullest.

My spontaneous lifestyle came to a screeching halt when I was diagnosed with CML and hospitalized to begin treatment. During that time I went from being extremely healthy to extremely ill.

My diagnosis was a shock to me, and to everyone that knew me. The most commonly heard phrase during that time was, "But, you're the healthy one!?"

I went from being the person that was always healthy, to the person that now had cancer; cancer that was a lifelong fight.

While I was in the hospital, thanks to social media, my diagnosis quickly spread to all of my friends and family, and the phone calls began.

Do not take this negatively, as I was empowered by the outpouring of love and support, and will be forever grateful, but I was also too sick, and too exhausted to repeat and explain everything that surrounded my diagnosis, my treatment, and my prognosis, to everyone who cared so much about me.

SO! I began a blog. Mind you, I had no idea what a blog even was, or how to start one, so I simply went to "Blogger", picked an orange colored theme for leukemia, and started to write. I explained my symptoms, my diagnosis and everything that I learned about CML and its' treatment.
Sometimes you bloom when you least expect it!

I did this to keep my friends and family updated on my condition, and to help them understand me and my disease.

I never "intended" or realized that anyone else would ever see, or read the words that I had written. If I had, I most likely never would have written, or shared them!

In order for my words to be published, I just write them, and publish them; no re-reading or editing, because if I did that, I would never post another blog in my life, as it would never be "good enough".
I just post with reckless abandon! lol

Shortly after I began my blog, I began hearing from other people with CML. I was shocked that they had "found" me, yet so relieved to hear from others living and thriving with CML.

I was told that they found me by searching for information on chronic myelogenous leukemia, as there was little information, at that time available. I believe I became a connection of sorts, to others who were fighting the same disease as me.

As time went on, and more connections were made, it became obvious that not everyone received optimal care and treatment for their CML. I became close to many, and I witnessed the deaths of people I had come to know and love.

More often than not, it is my belief that their deaths occurred because they received substandard care, from oncologists who were not familiar with CML and its' potential danger.

Because of these losses, I have continued to write, reach out, and speak loudly about the necessity of becoming your very own, educated, self-advocate, searching for the very best care for you and your CML.

Don't be fooled by the phrase, "You are lucky; this is the "good" cancer."

Because of this advocacy, I have had the honor to attend conferences, workshops, and seminars, and to be a voice for CML and its' community.

Because of all of you, I just keep on keeping on, and pray that I can be instrumental in saving a life or making someone's day just a tiny bit brighter.

Thrive, Leukemia Warriors; we've got this!

Ironically, just as I was about to post this blog, WEGO Health Awards started their nominations for Patient Advocates. If I have helped you in any way, great or small, I would SO appreciate a nomination from you.

This nomination will help to bring awareness to chronic myelogenous leukemia, its' victims and our struggles and triumphs.

Thanks for your support!!
Click here to nominate:

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Bricks for the Brave!!