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Defining Self-Advocacy

Wednesday, September 7, 2016

What does it mean to be a self-advocate? When we think of an advocate, we generally think of someone who is publicly supporting some policy or cause. So, how can you be an advocate for yourself? This week’s blog post kicks off a series of posts about how to become a self-advocate. Learn more about what self-advocacy means and find out how you can begin to advocate for yourself.

I’m not SHOUTING – I just want my voice to be heard

Friday, November 15, 2013

You’re used to making decisions. You multi-task while leading others in your job. Suddenly, you’re being told the decisions; you’re excruciatingly tired and weak; you can barely decide what to have for dinner. That was how I felt after my Chronic Myeloid Leukemia (CML) diagnosis in May 2009. And through countless rounds of blood work, doctors’ office waits, cardiograms, scans and the dreaded bone marrow biopsy, the system-focused health care system soon taught me that sometimes, in order for MY voice to be heard, it had to sound loud and confident.

The first year, I was sick with the side effects of my first cancer treatment and from the leukemia itself because the medication didn’t work for me. That year, I didn’t have the energy to make myself heard so just blindly did what I was told. Take this every day, do that, be here at 2 pm, don’t eat grapefruit, wait here, turn on your side, come back in three months. This series of short commands ruled my life. Then somehow, in that fog, I started questioning the commands. That was the first inkling of my voice coming back. Soon after that, we switched to another medicine for my CML treatment.

What to do When There’s a Drug Shortage

Wednesday, August 7, 2013

In recent years the number of drugs that are in short supply has been increasing, including drugs used to treat cancer. Most of these shortages are for drugs that are injected, or given intravenously. Some of these shortages are short-term and are caused by problems with shipping and ordering. Sometimes these shortages last longer. This is especially true when the shortage is caused by problems in the manufacturing of the drugs. If you have been diagnosed with cancer and are getting chemotherapy as part of your treatment, it is understandable that you would be concerned about a possible drug shortage.

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