Today was a day that felt like I was back in school – only it was medical school. I joined about 1,000 people for a webinar for chronic myelogenous leukemia (CML) patients, caregivers and healthcare professionals. My “classmates” were mainly from the US, but participants were also there from Egypt, Jordan, South Africa, Venezuela, the UK, Australia and other countries.
The “Current Treatment Options for CML: Progress in Research” webinar included presentations by two leading physicians involved in research for new drug therapies to treat patients with this form of blood cancer. What I really appreciated was that they spoke in their own language, and didn’t talk down to us. A key point made by the first speaker was that patients and physicians need to “navigate” together to optimize success.
Although I’ve only been dealing with CML for a short time, I’ve had to acquire a new vocabulary to understand information provided by my medical team, support organizations and co-survivors. Sometimes it feels like I’ve gone to a foreign country because I have no clue what’s under discussion, but I’ve learned to ask a lot of questions and most people are glad to help “translate” the jargon and make this process easier.
Once you pass the initial hurdles of learning the medical terms you then go through a transformation that’s similar to learning the language of another country - you can discuss what you’re dealing with on a more equal level. This leads to a deeper understanding of your options, and how to self-manage your own care. It also enables you to make better use of the time you have with healthcare providers because they can speak directly with you and not have to essentially “dumb down” whats said to get the conversation to a lay language level.
Here are some examples of my new vocabulary:
ABL - human proto-oncogene located on chromosome 9
BCR-ABL Tyrosine Kinase Inhibitor – type of drug
Cytogenics – analysis of the number and shapes of chromosomes of cells
Fluorescence In Situ Hybridization – lab test to detect chromosome abnormalities
Polymerase Chain Reaction (PCR) – technique that expands trace amounts of DNA so it can be studied
Translocation – abnormality of chromosomes in marrow or lymph node cells
There are many more new terms, of course. Just as learning a new language and becoming fluent in it takes time, this will take time too. Somewhere along the way I heard a saying that has helped me in navigating all of this – Dealing with a serious illness isn’t a sprint, it’s a marathon. I’m going to make the most of being in training!