Guest blogger, Kay Johnson, CML survivor
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.
As my hemoglobin level rose, I was physically and emotionally stronger and I felt my voice coming back. For example, to avoid frustration of a second specialist not having current test results, I made sure they were sent to him. That was also when I knew that my being a nurse was a godsend. Even though the emergency room (ER) docs weren’t convinced at first, this nursing experience helped me recognize the symptoms of pancreatitis very early. But even knowing that my instincts were right on, why did I feel nervous about speaking up? Was it so ingrained in me that only my doctors could or should make treatment decisions?
Switching to a third CML medicine was even harder to do emotionally because the second one had taken me to major molecular remission. But pancreatitis was too serious to risk again so, after a month’s chemo vacation and a leap of faith, I switched again. In the first 2 1/2 years, I almost reached complete molecular remission. Even so, I still needed to be aware of physical changes and be prepared to use my voice again.
I’m not a doctor but I do have reasonable intelligence and can make decisions if I know the facts. So, if I know there are warnings of pleural effusion (fluid around the lungs) with the third CML medication and I’m short of breath, I should go to the ER right away instead of waiting for my oncologist’s appointment in three months. This is common sense, right? Although the ER docs still hesitated to hear me on this side effect, it was easier for me to do this a second time. My voice was a little more confident and a lot stronger this time.
Do we feel so intimidated by the medical profession that we think if we speak up we will embarrass ourselves or annoy a busy health professional? Do we believe we will be seen as a difficult patient? Is it that we feel lesser than our care team members? And, if we don’t see ourselves as valuable members of our care team, worthy of having our voices heard, how can we expect anyone else to value us?
Since my diagnosis, I’ve learned that I am the one that cares most about me. Others care but I care most. So I will be as responsible as every other team member to ensure that my treatment is successful. I will monitor. I will adhere to treatment. I will ask questions and not just follow orders blindly. If I am not completely confident with my treatment, I will speak up. I will find a way to be heard so that I can survive and thrive.
One way that I am fulfilling my pledge is to get involved. Recently, I was given the honor
of being part of a national advisory council to assist the Cancer Support Community and The Leukemia & Lymphoma Society to help us have our voices heard. Together we have created the Cancer Experience Registry: Chronic Myeloid Leukemia. The Cancer Experience Registry seeks information from us about many aspects of living with CML. The registry also provides us with access to the resources we need and helps shape next steps in programs, research and public policy. We really need everyone’s help and want to hear everyone’s voice. You can make a difference in your own life by going to cancerexperienceregistry.org, registering and responding to the questions in the survey. Thank you in advance for making YOUR voice heard.