With National Hereditary Cancer Week and National Previvor Day coming up at the end of the month, I sat down to write something about cancer advocacy and being the parent of a previvor.
While I was staring at the blank page, I instead started thinking about how I ended up an advocate. About how I was suddenly thrust into the role of caregiver and the world of cancer with its strange, seemingly foreign language. Of course, being a professional illustrator, an idea for a satirical cartoon popped into my head right away. Sometimes you just have to draw a picture to get someone’s attention.
As the readers and contributors here know all too well, cancer has its own language associated with it. Since every cancer is different, the terms used to describe it and the available treatments almost requires a professional interpreter to help make sense of it all. And hereditary cancer also has its own distinct terminology, which adds even more to the already extensive cancer lexicon.
I’ll admit it, before my late wife’s cancer diagnosis, my knowledge and vocabulary regarding cancer was limited. And my awareness of hereditary cancer was nil. In my defense, even though I had worked on artwork for many medical and scientific stories, I was basically just a whimsical illustrator of children’s publications. Cancer was never a subject of any of my assignments. And, although I knew a few individuals who had had cancer, details about the disease itself were very rarely openly shared by them or their family. Nobody wants to talk about cancer.
However, everything changed one day. And it was literally in the blink of an eye. One moment I was sketching away and thinking about the great hiking trip my wife and I had just been on, mingled with thoughts of retirement and the secluded studio I had hoped to build someday. And the next minute, my life and dreams changed forever when my wife walked into my home art studio and told me she had “a painful lump.” Being ignorant about cancer was no longer an option.
After an urgent ultrasound and biopsy, my wife’s first doctor’s appointment was with a breast cancer surgeon who also happened to be a long-time acquaintance. His children were students of my wife’s when they were in elementary school, so at least we didn’t have the added stress of meeting with an unfamiliar physician. And since I planned to accompany my wife to all her doctor’s appointments, I came with a 100-page sketchbook that doubled as a notebook. I thought I was prepared.
Then the doctor pulled the reports out.
“Infiltrating mammary carcinoma, Nottingham score criteria: tubules 3, nuclear pleomorphism 3, mitoses 2 resulting in 8 out of a possible 9 points corresponding to a grade 3 lesion. FNA, right axilla lymph node revealed metastatic carcinoma. Waiting on ER, PR, and HER2 studies,” he calmly read.
“What the hell did he just say?” I thought as I sat there stunned. I didn’t understand much of what he just read, but I was very aware of what the word metastatic meant. That was a kick in the gut.
I was lucky in that I had honed my skills for finding information about things I didn’t fully understand. Over the years, I had needed to find credible resources to help me make sure I was accurately illustrating the art I was producing for the publishers I freelanced for. So I got busy researching cancer terms as soon as we got home that day.
It was like learning a new language. But it wasn’t for a planned fun vacation to some far-off exotic land, it was a new dialect learned for an unscheduled trip through cancer caregiving hell.
Thinking about it now, dealing with all the information that was thrown at us was so overwhelming and stressful for my wife and me. The enormous amount of information that you have to try and understand on top of trying to process the emotional impact of a cancer diagnosis is something that you can never be prepared for.
On top of everything else, we knew my wife’s cancer could have been prevented. It is heartbreaking to think that the difference between my wife’s untimely death from cancer and her being a previvor was the failure to use the right words to convey life-saving information to those at risk. But knowing what I now know about the language used by doctors I can somewhat understand what went wrong. Sadly, using simple and clear language, whether written or spoken, seems to elude many health care providers.
But that is why I became a hereditary cancer advocate. To try and use my artistic skills whenever I can to create easy-to-understand infographics to hopefully save others from the awfulness of a hereditary cancer diagnosis. Sometimes you have to draw them a picture.
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