It’s nothing new. I imagine I was never exactly ‘good news’ to my family – starting with the way I came into this world. It’s not like my parents were expecting me, all excited, with a decorated bedroom. They were not married. In fact, I didn’t meet my biological father until I was 26 – and it was my choice, not his. And the day I met him, he probably still thought I was ‘bad news.’
I was trouble to some people, but to others, like my grandmother, I was the rainbow in her world. She welcomed me with open arms despite my being a ‘little incident’. Overall I was a very happy child growing up. And it was mostly thanks to her. (My biological mother did not raise me but she worked hard to help support me.)
Then there was catholic school.
“No one born of a forbidden union may enter the assembly of the Lord,” sol Hilda the nun read to us in class. Until this day, I am not sure what story was told to the nuns about my origins, but somehow I got into their school. Maybe the money my family gave (what little they had) spoke louder than Deuteronomy.
Although no one ever said to my face that I was ‘bad news’, the culture in my home country labeled me that.
Later, as a young teenager moving to New York City, without the language and without the people who raised me, there were more bad news situations — but those stories are for another day.
What has me thinking about all of this is my most recent development.
As some of you already know, a while ago I underwent genetic testing to see if there was a genetic cause of my cancer. At first I was hesitant because I was worried about how I would react to knowing the results. At the same time, I wanted answers as to why I got cancer at such a young age, with the awareness that genetics probably wasn’t the only thing that contributed. I guess I was looking for some level of control (you never get that with cancer).
Learning about my genetic composition has helped me reach some closure about my diagnosis. This may be related to the fact I was diagnosed before finding out about my mutated gene. But I often wonder — if I had known about this genetic predisposition prior to my diagnosis, would I have reacted to my cancer any differently? I will never know.
I believe knowledge is power. That is why I decided to inform my family about my genetics. To me, finding out about my ATM gene gave me a sense of peace. But what about my family — those who haven’t been diagnosed with cancer yet?
Since giving them the news about our genetics, I’ve felt, in a way, like I’ve given them a diagnosis. Although some of my family feel the same way I do regarding having the information, I wonder how much this has disrupted their lives in some way.
Just recently, I was talking to one of my uncles who informed me that his daughter got the ‘clear’ for my mutated gene. I was very happy to hear it and when I tried to acknowledge that, he interrupted me, “but wait Rebecca, you may still want to talk to her. I don’t know if she tested for all genes. What if there is another gene? Talk to her please.” I took a deep breath and couldn’t help thinking, that once again, I am ‘no good news’ to my family.
And what about the time my aunt approached me about my mutated gene as if I was the original carrier who brought it upon the family? “So, that gene of yours…” she said, trying to initiate a conversation about her risks.
Most of my family don’t even ask me about my cancer lately. Maybe it is helpful for them to turn off the bad news.
My feeling of being a bearer of bad news to my family isn’t just related to my mutated gene though. It has to do with my cancer diagnosis too. I am sure this has scared some of my family, and has made them wonder if they are next. It used to be only the older people in my family getting diagnosed with cancers, except for my great-grandmother who died at the age of 49 from metastatic breast cancer. But I was 32 when I was diagnosed. I was the niece, the daughter, the sister, and the cousin. In a way, I feel I’ve brought a dark cloud over their heads by unintentionally interrupting their denial.
My genetic team at MSKCC warned me about this. They said some of my family relationships might change. I was OK with this and proceeded with genetic testing anyway.
So I guess bad news is just in my genes. I hope that people in my family will view my experience as an opportunity to make educated decisions. And I especially hope I am not being viewed as the one to blame for this mutated gene, because who the hell knows where it came from. This was out of my control, too. I can easily choose to blame my ancestors for this gene, but I won’t. This is my family. This is who we are – mutants, trying to live a life with too much danger, and more bad news than we want to hear.
Do you ever feel that, in a way, you’ve diagnosed your family with your cancer or/and mutated gene?
How have your relationships changed with your family since your diagnosis?