When Your Kids Can Google Your Breast Cancer Prognosis
The following is a guest post by Jude Calligros, author of "Breast Left Unsaid."
The first time I was diagnosed with breast cancer, it was already Stage II. I was in the middle of a divorce and had no children. The non-stop drama of those events are chronicled in my new book, “Breast Left Unsaid” - and despite all the difficulties of managing to the disease and divorce on my own, there were, believe it or not, some minor advantages.
The young people in my life; niece and nephews, and children of friends, were largely shielded from the more frightening aspects of the disease. I made sure they didn’t have to witness the day-to-day misery of watching me muscle through a very powerful chemotherapy cocktail. Yes, it was hell. But it was my hell and I could close the shades, ignore the phone, and be entirely alone if that’s what the day demanded.
Besides, I dreaded making people feel sad or helpless, and I certainly couldn’t abide knowing I was inflicting those emotions on a child. I knew I couldn’t control their fears, but I sure as hell tried; I put on my best bandanna, foundation and happy face whenever they were around. As long as no one ran to the bathroom for tissues and someone in the room was joking about something, I silently declared victory.
That was six years ago. Today I am happily re-married and a “wicked step-mother” (she calls me WSM for short) to a 20-year old attending college in Vermont. Julia came into my life when she was just fifteen and we bonded like Crazy Glue the first day we met. Her father and I married in 2009 and when I look back at the pictures, I can see pure joy in her eyes that her dad finally found love again.
However, the first time they both came to my house for dinner, Julia noticed a picture of me, completely bald. I kept it on my refrigerator as a reminder of what I had lived through and usually found it very motivating. Not so much for a 15-year old who was just getting to know her dad’s new girlfriend. She innocently began asking very pointed questions and even though she was so new in my life, I instinctively wanted to protect her. I pirouetted around questions such as, “Are you okay now?” and “Did it hurt?” Her dad was carefully observing how I would treat the subject matter - but was wholly empathetic and knew just when to re-direct the conversation.
Later in our relationship when Julia learned that I visit the oncologist every three months for blood tests, she of course wanted to know why. I explained, “To make sure everything is okay and there’s no sign of it coming back.”
“It can come back?”
“But then you’ll just beat it again, right Jude?”
“Yep. That’s the plan.”
Two weeks after I finished my manuscript this past January, I was not feeling well. My husband and I were in yoga class (yes, you read that right) and in one of the more pretzel-like poses I had trouble breathing. Several weeks later, and after many tests, I was back in the hospital with a recurrence of breast cancer that had spread to the pleura and liver. The world I had struggled so hard to rebuild had shattered again and my life was now playing out the scenario I feared most: I am Stage IV.
When breast cancer spreads to other organs, the horse is not just out of the barn; the stables are on fire. After my husband and I waded through the first few days of shock and all-encompassing loss and fear, we knew we had to tell Julia.
I am very close with Julia’s mother. She and I had a long discussion over tea and Kleenex one day about trying our best to make sure she can stay focused on her studies rather than dive head first into the muck of this disease. She advised that “less is more” in this situation and I agreed entirely. So we all “co-parented” on the communications and tried to ease her into the idea that I was indeed fighting again but that she shouldn’t worry; which was like trying to tell my dog not to chase squirrels. She’s a bright college student with access to non-stop information, everywhere, and would quickly dig in and draw her own, private conclusions. There is no hiding, really, from the truth of about it.
But being a parent now, I can now see why the whole truth matters. I can feel in my heart the need for her to be prepared; to help; to be the grown-up she wants to be. She and her dad have honest conversations about my condition because I can sometimes hear them whispering when I’m out of earshot or when she calls to check in. So I know she’s Googled enough to stay informed, and understands all too well, there is no Stage V.
We went to see Julia at college this weekend to see her new off-campus apartment and take her out for meals that didn’t include Ramen Noodles. She had not seen me since August and I have lost a bit of weight, but still have my hair and cosmetics for all manner of lighting.
Talk of the new chemo I am on took up less than two minutes of our first dinner together; her eyes filled up instantly so I changed topics to the excitement about my book being published, which was just about the best diversion anyone could hope for. It was a beautiful, warm autumn weekend in Vermont and magical in every way.
Julia kept grabbing me for spontaneous hugs, and held my hand when we walked; and was being the warm, wonderful kid she’s always been; but let me know she’s grown up to stand in the ring with me this time.
Ready to fight.
Jude lives in Connecticut with her husband Philip, dog Sophie, and assorted woodland creatures. She is also a wicked step-mom to daughter Julia, enjoying college in Vermont. Despite her ongoing fight with advanced breast cancer, Jude intends to continue writing, blogging and advocating on this and other topics for a long time to come. Breast Left Unsaid is her first full-length book. She invites you to visit her website at www.breastleftunsaid.com, and looks forward to your feedback. Jude also thanks you for buying her book "Breast Left Unsaid" and wants you to know that a percentage of the proceeds will go toward medical research focused on a cure for breast cancer and other diseases affecting her family.
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