Today’s guest blogger is Rachel Pappas, whose website 1 Up On Cancer is a resource with the aim of providing upbeat information for all cancers.
Taking a stand for my girl and me
After taking the hard line drive—hearing that I had a life-threatening illness—I asked the question that probably everyone who’s been there asks. “How did this happen to me?”
Then I went into overdrive. I asked myself, “What if ”c” (little “c” not a big one because the dragon scares me, but it’s not going to back me down) – but what if “c” were to happen to my husband, Paul; or my sister; or anyone else I love?”
I can’t help worrying. I freeze whenever the phone rings late at night, afraid this could be “the call.” The one about my dad. He has late stage prostate cancer. And almost every one of his siblings, his mother, his cousins and uncle … cancer.
I worry about my 20-year-old daughter, Marina as this monster disease extends more tentacles. So now I pin myself as Cancer Crusher and am on a mission. Task one was to go in for genetic testing. If we got the news I prayed daily we wouldn’t hear, my daughter, Marina would have a fifty percent chance of carrying a BRCA gene mutation. That practically guarantees you get breast or ovarian cancer – unless you make the huge decision to give up these female parts of you. I had enough of the risk factors to keep me up at night, worrying about her. I scheduled the tell-tale blood test.
Finally I’m across from the flush-cheeked, cheery genetic counselor who loads Paul and me up with the data. The data that tells you the odds you’re a carrier and that your daughter has this mutation that she just can’t have. With the numbers she just gave me floating in my head – I’m at the nurses’ station watching my blood spill into the first vial. I realize I’m now like the lady in the big recliner across from me, curled in a blanket on her cell phone flipping through her day timer. I’m like the one who just dropped a tin of brownies with the nurses, who’s talking about the grocery store run she’s got to make before her kids get home from school. You just go on with life like it’s any other day because you have to, like stopping for a traffic light or paying your electric bill.
Eight days come and go, and Paul and I are waiting for our gypsy genetic counselor to pull my fortune from the manila folder from Myriad Genetics. She scanned the top sheet while we waited for the verdict, but her expression gave her away before she got the words out. No mutations!
I couldn’t wait to get on the phone with my Marina. I hadn’t wanted to rattle her. But I’d felt compelled to tell her something. “You’re probably just fine. But if by some chance you have it, you would want to think about having your breasts removed. Women who do that can have reconstructive surgery. The new ones look as real,” I said, sparing the unnecessary details that the flesh on their stomachs and backs typically become their new breasts.
“The chances are low that I have the gene”, I tell her, though my secret voice is reminding me the odds are more than double what they were of getting this illness in the first place.”I’m just having this test so we know if we need to do anything later or if we can just forget about it,” I add, watching her eye me.
Waiting for Marina to answer the phone, so I could give her the news, my eyes were on Paul. A full-out, ear-to-ear grin had taken over my face as we sat in a booth ready to order brunch.
“Marina. Great news,” I bounced back to her sleepy hello. “We’re okay. You get to keep your boobies!” She laughed.
“Were you worried?” I asked, thinking she’d fess up now if she’d been a little shaken.
“No, not really,” she yawned. “It sounded like everything was going to be fine.”
I’d had the same feeling after the consult, but I just had to get mileage out of this excuse I was just handed to celebrate. To tell myself, I’m a “good statistic” this time, and my girl is going to be just fine.
Hi Rachel, so glad it all turned out well for you and Marina.
I love the guest blogs as they always introduce me to another aspect of cancer I hadn’t thought about before. So glad this story had a happy ending for Rachel and her family.
Rachel, you are a great story-teller. I really felt the tension, the uncertainty and then the relief in your story. Thanks for sharing.
I was faced with the same situation as Rachel last year and worried myself sick about my two daughters, aged 13 and 16. I really identified with Rachel’s story and thankfully like hers I am not a carrier of the dreaded BC gene mutation either.
Thanks for sharing your story Rachel – very well conveyed.
Beautifully written, Rachel! I love the image of the Cancer Crusher–that’s a great way to look at it. I related to your fear of passing this dreaded disease on to Marina, as I feared the same thing for my daughter Macy. Hooray for our girls, and congrats to you for being so pro-active. xo, Nancy
You’re all welcome for the story ladies and thanks much for taking the time to let me know you enjoyed and your kind thoughts about my outcome. Wew, what a roller coaster ride we all go in, don’t we? One day at a time, I guess.
Not to be a barerer of bad news, but ladies, if your BRCA panels come back negative and you have a lot of hereditary cancers in your family, you might want to think about further testing. One of the tests I’d learned about is called BART and sometimes picks up BRCA mutation when the other tests don’t – but again, not to open a can of worms – if you came back neg, it means you truly don’t have the BRCA mutations the tests you had know to look for. I recently did a couple of articles on this. Here are links in case you’re interested. http://tinyurl.com/3cey7h4
I remember being at the genetic counselor with my husband. My little voice told me to get tested when my doctors assured me I had no family history & didn’t need to worry. My little voice also knew what was in the Myriad test results before they told me. I was BRCA2 positive. Listen to your little voice. It can save your life. I’m thrilled for you and your family that you don’t carry that gene.
Rachel, I got to tell my sons that I didn’t carry the BRCA-1 or BRCA-2 gene. I don’t have any daughters, though, and I think it would be more of a relief for a daughter, who may have a higher risk of breast cancer that the boys. Congratulations on your test results, and thanks for sharing with us your story!