Talking to your kids about cancer

This is a guest post written by mother, two-time breast cancer survivor Shirley Horn. I don’t have Internet access in my new apartment, so I haven’t been able to post lately. But I’ll update you all soon! For now, enjoy my mom’s writing.

Decisions about parenting are like decisions about breast cancer treatments:  only YOU know what’s best for your children and yourself, regardless of what any of your close or not-so-close relatives or friends have to say about it.  When you’re faced with a disease as daunting as cancer, how to tell the kids is one tough part of the process.

My husband is Jewish and very traditional in his cultural and secular views. “Don’t tell the Kinder,” is a phrase I’ve often heard in our 24 years of marriage. (“Kinder” is Yiddish and German for “children”.) With my husband and his generational peers, it’s a deeply held belief that children should be allowed to keep their innocence as long as possible, unburdened by the woes of the world. When Rachel was very young, it seemed a good mantra to uphold and I wanted to protect her from everything that was bad or sad.

Shirley and Rachel in 1990 in England

We had just moved from Massachusetts to California when I was diagnosed the first time.  My daughter was 9 and she was settling down in our new neighborhood and making friends in her new school. Although she was a bright and precocious fourth-grader, we chose not to share the news with Rachel until we knew as much as we could know about my cancer and treatment plan. Since I had a lumpectomy rather than a mastectomy, it was an outpatient procedure and although we told her I was going to have an operation, I was home when she got home from school that night and functioning fairly normally. A couple of weeks after the surgery, we were off to a family reunion to celebrate our old uncle’s 80th birthday.

Chemo is, of course, a different story, and one not easily hidden. If the sight of Mom going bald isn’t enough to scare the wits out of a child, watching Mom with her head in the toilet heaving her guts out several times a day for a couple of days every week will certainly do the trick. (Or at least make your kids think twice about eating Dad’s cooking!)

A few weeks before my chemo began, I sat Rachel down one afternoon and explained.  “Mom’s sick.  I’ve got something called breast cancer. That’s why I’ve gone to the doctor a lot lately and went to the hospital last month. I’m going to be OK, but I’m not completely done yet. Soon, I’m going to start taking some medicine that is really strong and powerful.  The medicine is going to make me sick, too, but just for a little while. It’s even going to make all my hair fall out, but it’s going to make me better so the cancer doesn’t come back.” I think I said a few more things and then I asked Rachel if she had any questions. She said, “May I have a cup of tea, please?” That’s when I knew she’d be OK, too.

Rachel went wig shopping with me. We made a day of it and went to a cool shop that had a large selection of wigs and hats. She had fun helping me try on the wigs and she even got to try on a few. Together, we selected my wig (which I ended up wearing only once) and we each picked out a cute hat. She was part of the discussion when I decided to get my “G.I. Jane” haircut before chemo began, and she defended my honor when the kids at school teased her about having a bald mom.

We were fortunate to have several wonderful friends (mothers of Rachel’s friends) who pitched right in and drove carpool, brought over meals and invited Rachel for sleepovers during my treatment. Rachel herself maintained a cool and calm composure; I don’t ever remember her showing fear or being upset. If she was, she never let me see it. Even at 9, her protective instincts were there.

How old should a child be before you suspend the “Don’t tell the Kinder” rule when it comes to something like cancer? Not every 9-year-old child is capable of handling the Big C with the poise and maturity that Rachel showed. Your 7-year-old may absorb the news and deal with your illness by becoming Florence Nightingale and never leaving your bedside. Let your motherly instincts and intrinsic understanding of your child’s disposition guide you.

I found that being straightforward with my daughter and involving her in the process was the best course of action then.  12 years later, when my cancer returned and I discovered that I carry the BRCA 2 gene mutation, it was still the best course of action.

Shirley and Rachel at graduation in 2012

Shirley Horn is a retired marketing professional living in Redondo Beach, CA. She is an avid paddler for the Los Angeles Pink Dragons, a breast cancer survivor dragon boat team. She is also an artist and sells her work, along with custom-made mastectomy drain pockets and pit pillows, on her online store Precious Survivors.

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November 2011: Mom’s mastectomy

Following Mom’s second breast cancer diagnosis in September 2011, she was tested for a BRCA mutation. She tested positive, explaining why she had been targeted by breast cancer twice in only twelve years.

Twelve years ago, in 1999, she was given the choice between a mastectomy and a lumpectomy. Twelve years ago, she didn’t know about the BRCA genes; not many people did, since the BRCA genes had only been discovered about five years earlier. Why have a mastectomy when the cancer tumor could be removed, and any remaining cells could be attacked with chemotherapy and radiation? A mastectomy meant losing her breast and dealing with even more surgery; a lumpectomy seemed like a much easier solution. So she had a lumpectomy.

Twelve years later, it was obvious that a mastectomy would be the smart choice for dealing with this second case of breast cancer. Her BRCA mutation meant that any breast tissue could turn lethal; having a lumpectomy might only be a temporary stop to breast cancer.

On November 9, 2011, we drove over to UCLA Medical Center at the crack of dawn for the mastectomy. Mom had showered and braided her hair the night before and was in all around good spirits. The three of us (Mom, Dad, and me) waited in a small pre-op room. Throughout the next hour, various people popped in to say good morning and explain any last minute surgery details: We saw her breast surgeon, Dr. Helena Chang; her (and later my) plastic surgeon, Dr. Jaco Festekjian; and many members of the anesthesiology team.

Here we are before Mom’s mastectomy…notice her braids! Smart choice.

Mom’s breast reconstruction, done by Dr. Festekjian, was a combination of a DIEP Flap procedure and a tissue expander insertion. Fat tissue from her stomach was used to create a left breast (the DIEP Flap procedure). This was necessary because her left breast, which had been radiated twelve years before, could not support an implant. Some women are able to use the DIEP Flap procedure to recreate both breasts, but Mom was too skinny for that! A tissue expander (like mine!) was inserted under the muscle of her right breast.

Dad and I sat in the hospital waiting room for hours during her surgery. A television screen monitored the progress of each patient, tracking if they were still in surgery or if they had been moved to a recovery room. After more than eight hours, Mom was moved from a recovery room to a hospital room. We were finally allowed to see her.

As expected, she was very drugged up and was also having problems with nausea. But she’s a trooper, and the next few days were easier. I tried to visit her each day after work or school, bringing her food or small gifts. One present was a 20 Questions electronic game. We had a lot of fun with that one, and her nurse was delighted because she had recently purchased the same toy for her grandson but had no idea how to use it! It’s a good thing I was there to teach her. =P

The 20 Questions toy!

After Mom’s mastectomy, her breast tissue was sent to a lab to be biopsied. Since she already had breast cancer, they studied the tumor to determine the next course of action. We were all delighted when Dr. Chang called to say that the tumor was very small and contained, meaning that chemotherapy would be optional! Yahoooooo!

Since it was Mom’s choice and she had already gone through the trauma of chemotherapy and radiation once before, she opted to forgo the optional extra treatments.

Mom, relaxing at home in bed in the days following the mastectomy. Note the Stuffed Usurper, a stuffed animal version of our dog Madeline, who was on vacation in San Diego with her auntie and uncle.

Over the next few months, Mom returned to Dr. Festekjian to have saline inserted into her tissue expander. She also started to see Dr. Amer Karam (my breast surgeon…isn’t he cute?!) about having a prophylactic oopherectomy. Dr. Karam is a gynecologic oncologist and breast surgeon–a true Renaissance man!

A BRCA mutation is not just about breast cancer; it also means an increased risk of ovarian cancer. Since Mom went through menopause already, removing her ovaries (an oopherectomy) was a practical decision.

The timing worked out that Mom’s oopherectomy could be at the same time as her implant exchange surgery, on February 27, 2012. Dr. Festekjian swapped out the tissue expander on her right side for a permanent silicone breast implant. He also took care of a few aesthetic issues associated with the DIEP scar. Dr. Karam performed the oopherectomy.

Since both surgeries were more minor than the mastectomy, Mom was able to come home later that afternoon…and I was able to go to Vegas with my girlfriends the following weekend without worrying about her, whoohoo!

Her recovery has been great since both surgeries. When she regained strength in her upper body, Mom joined the LA Pink Dragons, a dragon boat team of breast cancer survivors. She rows with them twice a week in Long Beach, and she loves it!

Physically, she looks HOT. The DIEP Flap procedure was in essence a tummy tuck, and her reconstructed breasts are slightly bigger than before, making her a large B cup/small C cup. If you’re going to get cancer, you might as well reap the benefits of fighting it off…get a rockin’ bod!

 

Twelve years ago

Twelve years ago, I was a carefree nine-year-old who had just moved from Boston to San Francisco. School was going well, my parents promised to buy me a dog for Christmas, and I’d joined a soccer team.

Rachel and Madeline, early 2000

My head was in the clouds. I don’t remember much about my mom having cancer; I just knew she was sick. It didn’t mean very much to me.

In October of 1999, while getting dressed for work in the morning, my mom found a lump in her left breast. An October 14th mammogram and ultrasound revealed a “9 x 11 mm mass with ill-defined, indistinct margins.” An October 22nd biopsy confirmed it as a “grade 2 infiltrating ductal carcinoma.”

Rachel and Mom, Halloween 1999. Mom made me that Sgt. Pepper costume!

My mom was given two options: a mastectomy or a lumpectomy (at the time, doctors didn’t know she had a BRCA mutation.) Either option would require chemotherapy and radiation.

She opted for the lumpectomy. Her first round of chemotherapy was on January 17th, 2000. By December of 2000, her mammograms were clear.

Where was I in all of this? I’m not really sure. I have no recollection of the moment she told me she was sick. Apparently she sat me down and explained, as best she could to someone who would prefer to ride a bike than to talk about medical problems, that she was ill but she was getting treatment and would be okay in the end. After she was done talking, I asked for a cup of tea.

Either I absorbed the news so well that I was going to reflect on it with a nice cup of Earl Grey, or I had no idea what to do with the information and was looking to change the subject.

One day we went shopping for wigs. It was a lot of fun, but boy, was it overwhelming. There was so many styles. At the time, my mom’s hair was a curly ash brown, styled in a short, almost cropped cut. But the wig she picked wasn’t like her hair at all: it was auburn, a shoulder-length bob. And she never actually wore it–why did we pick it?

“Why?” Those were the type of questions I remember.

“Why is your mom bald?” That was the worst one, my most vivid memory of my mom’s breast cancer. I was in my fourth grade class giving a presentation about animal abuse. I’d invited a local newspaper columnist who wrote about animals to speak to the class. My parents were so proud of me; they came to watch my presentation and to meet the columnist.

Mom wore a green, flowery dress that touched the floor and a purple knit hat. It was obvious that she had no hair: even the shortest of cuts would have had at least some strands poking out the back. The hat was a way of protecting the rest of the world from cancer, of shielding the problem and letting everyone ignore it.

So when a boy named Michael asked why my mom was bald, I was taken aback. Didn’t he know he wasn’t supposed to ask that kind of question? Had his parents not taught him any manners? What was his deal?!

I don’t remember how I answered him. I’m sure I said something snarky.

That incident was honestly the most traumatic breast cancer-related moment of my childhood. By the time fifth grade started, breast cancer seemed like a thing of the past. Mom was done with chemo and radiation, her hair was growing back, life had resumed as normal. Breast cancer, it seemed, had only been a minor hiccup.