May, 1998. The news no one in my immediate family wanted to hear. My mom, 49.5 years old, had breast cancer. I was 27 years old. I figured I had 22 good years left, before the cancer struck. I was doomed. It had to be hereditary.
My grandmother, on my father’s side, had breast cancer in the 1960s. I don’t really know exactly when, and I don’t have a clue as to how invasive it was at the time. I just know she had it, as evidenced by my mother’s gnawings about it, as well as the “faux boob” hug that I got from Ludie whenever she’d hug me tight. I always knew. I always knew she had it, I always knew I did not want to ask about it, and I always knew that I would someday wonder if I, too, would suffer the same fate, cut apart by doctors trying to save the rest of me.
Whenever I was younger, 21 to be exact, I somehow convinced my older gynecologist that I needed to be “fixed”. A tubal ligation was my trick – end the child bearing before it got to be too much. I had my child. I had no desire to have another one, with that husband, another, or anyone else. The experience of childbirth was horrid – I certainly did not want to endure it again. The 7 resident physicians that they trounched through my room that morning in 1990 (without asking!) was way more than enough for me, for life. The pain I will never forget. The humiliation I will never forget. I am not maternal, and I never will be. It just wasn’t for me. I knew it then, and I certainly knew it in December 1992 when I somehow convinced Dr. Allen that I really never ever ever wanted to be a mom of an infant again in my life. Ever. I remember him asking me – “what if your child died”, “what if your husband died”, “what if you got remarried”. I was ready with all the answers. Like always, I’d prepared. I’d done my homework. I was ready for anything he could have asked that day. I had an answer for everything. And he decided my answers were good enough. He did the procedure, and I was good to go. I was a parent of an only child. I liked it. I still do.
I was not maternal. I was unlike my parents, who wanted “6 kids”. I could never understand why someone would want more than a couple, if that. I still don’t, honestly. I look at friends who have more than 2 and wonder what gene I was missing that made me so unmaternal. Even my ex-husband would comment the same, “You are the most non-maternal person I’ve ever met.” It was true. It still is. I’m not even looking forward to grandchildren.
I guess part of my unmaternal instinct came from the fact that I have felt a part of raising children since I was around 9. That was the time when BK (before Kara) went to AK (after Kara), with “Kara” being my sister. I had pined for a younger sister when I was a child. I wanted someone to play with, someone to dress up, someone to show off to my friends like they showed off their siblings to me. You see, I was an only child for 9 wonderful years – an only grandchild on one side as well. And, with 2 great-aunts who had no children as well, I was triple-dipping in the grandmother pond of happiness.
Then, along came Kara.
I love her dearly, now, but back then, I loathed the thought of having to share anything with her. My room, my things, my parents, our money. I wondered why I was forced to have parents who were still having kids at the ripe old age of 35! The nerve of them! Here I was, happy in my lonely existence as an only child, and my parents decided to have three more. UGH. More mouths to feed. More stress on my Mom. More work for me.
Then, in 1985, my other (maternal) grandmother had some problems walking. Since she hadn’t been to the doctor in like 30 years, she decided finally to go see someone. After many tests, he diagnosed breast cancer. The two most dreaded words for a woman! Now, it was on both sides of our family. From that point on, my Mom worried constantly about getting it herself. Testing, mammograms, monthly self-exams, and reading about it. My grandmother? She was fine. A bit of chemo and some surgery, and she was as good as new. She never worried about anything, or at least she didn’t’ in front of me. So, if she thought she was going to die, I never knew. Maybe it was different for the older folks – I was only 13 at the time, with a broken arm, just before my tryouts for 1st year majorette. Life went on. She healed. She always used a walker after that, but she was in good spirits. I never knew the real agony, apparently.
About 14 years later, my Mom was diagnosed. She got her notice the same day that Linda McCartney died of the same ailment. It was not a good omen. It was almost like she’d wished it on herself. I was angry at her for wishing it on herself. This was long before genetic testing was “all the rage”, so no one even knew that she would get it. She just kept on self-examining and going to the mammographer until it was true! Or so it seemed at the time. I remember having to talk her out of the bathroom when she found out that she had the “C” word, expecting that it would turn into the “D” word at any minute.
It didn’t. Radiation, a mastectomy and hysterectomy, and she has never had any recurrence since. So much for all the worry.
I remember, though, being at the hospital with her that week. I left work early and drove the 2.5 hours from my town to the hospital. My sister’s rude and obnoxious boyfriend (no longer in the picture now, thankfully) told me that “he’d been there since 6am”. I informed him quickly that “I’d been there for the past 28 years”. Obviously he didn’t know a worthy opponent when he saw one, and he sulked into the corner. She was weak. She looked tired. But, she was strong on the inside. She is still strong.
For me, this meant that I, too, could be cursed with this outcome. A foregone conclusion, like Angelina Jolie’s own. I had stressed about it for years – wondering if I, too, would wake up at 49.5, with a life ahead of me, thwarted by a dastardly disease. I had a life I wanted to live. Having escaped my hideous first marriage (I CAN call it hideous at this point), I wanted to LIVE. I wanted to travel. I did not want to be branded with a disease. At 40, when my first “real” mammogram came about, I was certain that they would tell me I was infected. At 41, I took the Valium the dentist had given me for a crown, hoping that it would chill me out enough to go to the appointment without crying or running out the door screaming. At 42, the weird look from the technician, after a long fun conversation about my day job, was enough to make me think she thought something was wrong. She, the technician, saw something bad enough and didn’t want to tell me. It was horrible.
Thankfully, my gyno’s nurse is also one of my best friends from high school. The girl who, at our 20th high school reunion, provided the beer to get us all through the evening. So, I had a friend on the “inside”. Someone I could call and freak out about, even if it wasn’t freak-out-able. She called. I waited. The results were normal.
Although I had thought about it for years, I had never had the BRAC test done. Why? Because back when they first started doing them, it was a death sentence. It was like being told, “You are going to get cancer. We don’t know when, but you WILL have it. And, because the insurance industry is ran by a bunch of men who could care less, you won’t be covered until you get it. So, you’ll live every day, going to the mammo every year, knowing you’ll have it, but not being able to do anything about it.”. Why preventative care is not covered is beyond me. It’s so much cheaper than fixing-it care. With the help of a good physician, the best really, I was finally convinced this year to do it – take the BRAC analysis and see. Just see. Just move along and see what the results are, so that a plan of action can be developed.
The test? $4500. The cost to me? Who knows at this point. My insurance has deemed it “not covered under your usual PCP coverage and more information needed”. After making the decision, I honestly don’t care if it had cost $10K out of pocket. It was worth it. I know now. I can make a plan of action.
My results? Negative. I do not have the genes responsible for most of the breast and ovarian cancers in the general US population. Not to say that I won’t get either one – I may very well. I may die tomorrow in a car accident. But at least I know that I don’t have the gene. My sisters? Who knows. I didn’t tell them before I took the test. I didn’t want them to worry. I didn’t’ want a million questions from friends. I wanted this to be as close to the vest as possible, so that I could personally and privately deal with the results, between my spouse, physician and myself, before I told anyone else. I was okay with either result – one way (positive) and I would basically get a free boob job and a hysterectomy (I say out with the old, in with the new), and the other way (negative) and I would carry on, knowing that at least it was most likely not genetic. I called my sisters, then my Mom, and told them the news. Just because I’m negative doesn’t mean they will be. It also doesn’t mean I’m always in the clear. I’ll still go every year and get the “whole house” inspected, as my friend Janet likes to say.
For those of you out there considering to BRAC or not to BRAC, my counsel is this – if you think about your genetic makeup more than 4 times a month like I did, do it. You have nothing to lose, and so much to gain – peace of mind, a new beginning, or a new lease on life. It’s not for everyone. I have never been attached to any of my “parts”. It would not have bothered me to say goodbye to the saggy top half and goodbye to Aunt Flo. I would have relished in quick-onset menopause, if I had known that I would have lessened my chances of getting breast cancer from 87% to 12%. Bring it on is what I say.
If you ever want to talk to me personally about my experience, please feel free to email me at firstname.lastname@example.org. Girls like us have to stick together.