A Walnut Creek mother tells her story of coping with cancer
Our laughter echoed off the walls of my front entryway as some old friends and I joked around and poked fun at each other. I was startled when the doorbell rang; I had forgotten someone was bringing dinner that night.
“Oh, no!” I whispered. “Dinner’s here!”
Everyone went dead silent.
My friend Lisa stifled a giggle and whispered, “Should we hide?”
I asked my sister, Megan, “Do I look sick enough?”
My two boys, ages one and three, ran past me, chasing each other and screaming with delight. I was mortified to think someone holding a hot meal they had spent hours preparing was listening to a party going on inside the house where the cancer patient was supposed to be living.
Megan nodded somberly, and I opened the door.
It was a crazy moment but probably the closest thing to normal I had experienced since I felt a lump in my right breast three months earlier.
The first time I felt the lump, I thought of every excuse not to take it seriously, searching the Internet for other possibilities: a cyst, a fibrosis—anything but cancer. But two weeks later, as I was showering, I realized the mass had doubled in size. I knew I could not ignore it any longer. A tinny, faraway voice tried to break through a self-protective fog that had settled in: What am I going to do? Who’s going to take care of my kids? This can’t be happening. … I’m too young.
I had turned 39 a month before, my days overwhelmed by the work of being a stay-at-home mom: multiple diaper changes, driving my older son to and from preschool, trips to the pediatrician, park, and grocery. That morning had started with the same kind of agenda. But as I toweled off, my head felt like it was packed with cotton and my ears rang. I could barely hear my two boys’ high-pitched giggles as they ran around with my husband, Dan, downstairs.
I slowly went downstairs and was immediately hit with requests from my older son, Jeffy: “I want to go outside. I’m hungry … and thirsty.” I headed for the refrigerator, a sippy cup vise-gripped in my hand. The air around me felt like Jell-O.
Dan held Jonny in his arms and looked around his tiny blond head to tell me about what the boys had been doing, but he stopped short when he saw my face. “You OK?” Dan asked, letting Jonny wiggle out of his grasp to toddle over, arms stretched high so I could pick him up.
With Jonny perched on my hip, I untwisted the cap of the sippy cup and poured in juice, nodding my head numbly as I performed the task. “Yeah, I’m fine,” I said, trying my best to look cheerful as I handed the juice to Jeffy and began to wipe down the countertops. I did not want to have this conversation in front of the kids. And honestly, I did not know how I was going to have the conversation with Dan.
Fortunately, Dan knew me well enough to let it go.
Later that night, when the kids were tucked into bed and it was just Dan and me in our room, I looked at him and blurted it out: “I found a lump.”
Looking confused, Dan asked me, “A lump where? In your breast?”
Then the tears came.
He pulled me close, stroked my hair, and tried his best to reassure me. “If it is something, we’ll fight it.”
“Besides,” he said, looking into my eyes, “it’s probably nothing.”
In a way, both of us knew he was lying.
My gynecologist saw me the next day, and Dan took the day off to come with me to the appointment, as well as to the mammogram and ultrasound the following day. It seemed as if those two tests lasted forever.
Finally, Dan and I were led into a separate room where the radiologist explained the results. “It looks suspicious,” she told us. We both stared at her, trying to grasp what she had said.
My heartbeat drummed in my ears as I asked, “Suspicious … like cancer?”
I heard her say she was faxing the report to a Walnut Creek surgeon, but that’s when my mind shut off. I could see her mouth moving, and I knew she was saying something very important and technical, but only three words got through: “Yes, likely cancer.”
On the way home to Concord, where we were then living, my eyes hurt from the harsh sunlight shining off other cars as they blurred past. I felt light-headed, desperate to latch onto any thought that did not include the word cancer. I told Dan to pull the car over. He held me as I cried.
When Dan and I walked in the door, my dad and stepmom were busy with the boys, assembling all the loot they had gotten in the toy section of Target. My mom and sister sat talking at the kitchen table.
My sister, Megan, was the first to ask, “How’d it go?”
I just looked at her, my brow furrowed in grief, and shook my head. “Not good,” I croaked.
Her eyes filled with tears, her hand covered her mouth.
“Oh, Jennifer,” she said.
Jonny ran up, wanting to be held, and Jeffy hugged my legs, saying, “I missed you so much!” As the boys dragged me into the other room, I felt grateful to be pulled away from the sad looks. I watched a small semicircle of family engulf Dan with hushed questions.
The next day, Dan returned to his job in San Francisco, and after I dropped Jeffy off at his preschool, I called to the surgeon’s office to make an appointment. I paced back and forth as the phone rang, checking on Jonny, who sat on the floor in the playroom quietly pulling his board books off the lower shelf and building a nice bonfire-size pile.
When the nurse finally came on the phone, I could barely find my voice. She took my information and gave me an appointment for the following week.
Then I lost it.
To me, the cancer was like an ugly black spider that had burrowed itself into my breast, and the thought of it continuing to live under my skin, growing plump, furry, and fat, sent me over the edge. Tears streamed down my face, and I paced harder as I forced the words out between sobs, begging to be seen sooner.
I was reassured that they could schedule surgery within days of an appointment, and the nurse was able to calm me down a bit. As I hung up, Jonny started to cry. One of the books had pinched his fingers. I ran to him and rocked him until his tears subsided. He tried to push away, but I held him tight as my own sobs wrenched my body.
The smell of his dirty diaper snapped me back to reality, and I started changing his pants. As I watched his perfect little body, so vulnerable, I pushed down the grief. I became Robo-Mom, and that role gave me some relief. I worked mindlessly, my hands taking over. The routine gave me a sense of peace and normalcy. This would become a strategy for me to hide away in the day-to-day, to not think about the cancer.
I tried hard to keep my emotions from my boys, leaving the classroom to talk with Jeffy’s preschool director or going upstairs to talk to a friend on the phone, but I might as well have been shouting my fears directly at my kids. Their world was shifting, and they knew it. Before the diagnosis, Jeffy would run with delight into his classroom at Peter Pan Preschool in Pleasant Hill, but after, he clung to my leg crying when I would try to drop him off, pleading with me to stay not just a little bit but “a bigger bit.” Jonny fussed more often.
I got a book called How to Help Children Through a Parent’s Serious Illness and read how, above all, children need a sense of security during a parent’s illness. I needed to keep my boys’ world as structured with our normal routines as possible. I also needed to come to terms with my illness, because no child can adapt when a parent is continually crying about it.
It was somewhat natural for me to turn to humor to try to get beyond the fear and grief. The family I grew up in has a tendency to laugh at adversity, and my husband and I had continued the tradition. After my diagnosis, the best man from our wedding, Mats, started calling me once a week. In addition to being great at slinging the sarcasm, he had recently had a friend fight breast cancer and knew what I was going through. I could always joke with him. His calls gave me an opportunity to be as blunt as necessary and to find a way to laugh about some of the more horrendous things I was enduring.
“How’s it going?” he would ask.
“Gee, Mats. Couldn’t be better! People are lined up to cook my dinners; I’m going to get a nice vacation from the kids following my surgery; I’m not going to have any ‘bad hair days’ with my wig; and I’m gonna have perky boobs to boot! I should have gotten cancer a long time ago.”
He would laugh with me, which was actually a huge help. Even though my family loves humor, these days they thought my jokes were not funny at all. But I had to keep a sense of humor. It made me feel like I had some control.
Knowing my hair was probably going to fall out during chemo, I went to the American Cancer Society’s Pleasant Hill office to borrow a wig and came home with two, which were both very sassy and very different from my own hair. I tried on the first—a very short, dark-red number—and asked Jeffy what he thought. He looked at me with utter sorrow and said, “Bring Mommy back.”
I immediately switched to Plan B. I went to Valley Rags & Wigs in Dublin and purchased a wig that looked like my normal hairstyle. And I stopped asking my three-year-old for advice.
I could feel a change happening within me. Maybe it was acceptance or perhaps just a kernel of the fighting spirit I would need to endure this. I focused on doing whatever I could to prepare for my treatment, and I tried to adjust my mind-set about being a mother. As a mom who had left a career I loved to raise my children, I had convinced myself that I was the only person who could do it. Then I had an epiphany: I was replaceable.
I remember sitting stoically, listening as friends and family decided how to cover my daily tasks while I was recovering from surgery. It felt like they were planning an invasion. People crowded around my kitchen table, calendars and paper out, pencils scribbling frantically as they developed a strategy.
My close friend Lauren volunteered to drive Jeffy to and from preschool, while my mom, dad, stepmom, in-laws, and sister scheduled themselves to babysit, drive me to appointments in Walnut Creek, pick up groceries, unload the dishwasher, and take the kids to the park, among other things. For a moment, I found myself thinking about which of the surrogate moms would let my kids watch hours of videos or eat cake and cookies before lunch, but then I stopped. I learned to keep my mouth shut.
Within the next two weeks, I underwent a lumpectomy, met with a plastic surgeon, scheduled a bilateral mastectomy with reconstruction, and outlined an aggressive plan with my oncologist for eight rounds of chemotherapy, six weeks of radiation, and hormone treatment.
During my mastectomy, I lost a lot of blood and ended up spending two extra days in the hospital. On my last day there, I called Dan, who had gone home to the kids. I was feeling pretty good, enjoying the fall colors dappled along the hillside through the windows of my private room, the pain medication doing its trick. “How’s it going, honey?” I said almost dreamily. I could barely hear his response over the boys’ crying, my parents’ babbling, and my sister’s cries of “Hi, Jennifer!”
“We miss you!” Dan screamed, while also barking commands to Jeffy and soothing Jonny’s tears. “We’ll see you soon.”
I hung up and enjoyed what would be my last bit of calm for a while.
When I got home from the hospital, both kids had horrible colds, and it looked like a toy store had exploded in my living room. In addition, my younger son, Jonny, still woke in the middle of the night, and once I was home, he wanted nothing to do with Dan. He wanted Mommy. I was on strict orders not to lift anything for at least three weeks, so Dan picked him up for me and laid him on my chest. But now I couldn’t settle Jonny down; my bandaged chest no longer had soft cushioning for his head.
Although I had reconstructive surgery at the time of the mastectomy, the expanders (heavy plastic implants used to stretch the skin and muscle out before inserting the real implants) sat deflated beneath my skin and chest muscle. My chest was like a piece of tire tread lashed to a rib cage.
I placed a small pillow between Jonny’s head and my bandages, tears sliding down my face as I stroked his soft, blond hair. Dire thoughts filled my head: Would I see this small boy grow up? Would I live long enough to watch him go to high school? To kindergarten? These quiet times in the middle of the night were the worst: I would alternate between thinking about death and feeling a searing anger that made it difficult to sit quietly while Jonny fell back to sleep.
One night, as I sat in the glow of the Pooh Bear night-light, Jonny snoring softly on my chest, I developed a plan. I thought of ways to ensure that my children had some touchstones to give them strength if I died. I outlined what I wanted to teach my boys if I lived one year, three years, or five years. My list included trips to the ocean and mountains, bringing more art into their lives, developing family traditions that could be continued without me, easing them into day care, and giving them a sense of there being a heaven.
I did not see this as giving up. I was being pragmatic.
On a trip to the Santa Cruz Mountains with my sister, Jonny, and Jeffy a few weeks later, I looked up at the spires of the giant redwoods and was awestruck by the shafts of sunlight streaming down through the branches. It was a beautiful area—majestic and serene. Pointing up to where I was looking, I told Jeffy that if he looked really hard, he could see the angels dancing on the treetops.
Jeffy looked up in wonder, and I caught Megan’s look of anguish. She knew what I was doing.
“Is that heaven up there?” Jeffy asked.
“It’s way up high above the clouds,” I said, putting my arm around his shoulders. “I hope I can go there someday,” I added softly, envisioning my boys coming here years later to search for their angel-mommy’s tiny dancing feet.
“You have to die to go there, don’t you?” he asked, eyes big as saucers.
“Yes, you do.”
“Then you can’t go,” he said with finality. He grabbed Megan’s hand and walked away.
By my third chemo treatment, I still had hair, but small wisps were starting to swirl into the shower drain. A week before Christmas, as I was preparing for an afternoon holiday party, I stood bent at the waist with my head upside down, pointing the blow-dryer to the back of my head and combing through my short blond locks with my fingers. It felt really good, and I realized why: My hand was covered with my brittle, lifeless hair—a furry blond glove.
Already running late, I didn’t have time to tie back my hair and figure out my wig arrangement. I ever-so-gently styled what remained of my hair and plastered it with as much hair spray as my lungs could withstand to keep it from falling out.
I came downstairs and asked Dan, “How do I look?”
“You look beautiful,” he lied. We both started to laugh.
When Dan and I returned home that night, my sister watched the kids as Dan shaved my head in the bathroom. He rubbed my stubbly head, smiling sweetly at me in the mirror, and said, “When we were saying our vows, I never thought this would be part of the arrangement.”
Looking like a cross between Kojak and G.I. Jane, I donned my wig and stepped into the family room, ready for the screams of “Where’s Mommy!” But the boys looked up from their Thomas trains, blinked twice, and returned to the Island of Sodor. The transformation was complete.
During that time, Jeffy worried a lot about me, and Jonny was very clingy. I had to sneak away from him to go upstairs to sleep following my chemo treatments, which wiped me out. But I felt pretty good a few days later, thanks to a constant flood of help that allowed me to catch naps during the day. And, of course, there was my husband, who not only was dealing with the fear and uncertainty of having a spouse with cancer but who also took over many of the mommy duties. Dan would come home after a long commute and maybe have time to change his clothes and catch a breath before taking over with the kids so I could go to the bedroom to lie down.
Treatment continued every two weeks for the next three months, and it seemed as if I were constantly either at a treatment or a doctor’s appointment. One day, on my way out to get blood work done at the lab, Jeffy asked, “Are you sick?”
My heart skipped a beat. “I was,” I said. “But I take medicine, and the doctors are making me better. They check to make sure I’m doing OK. It’s kind of like a checkup.”
“Do you get a shot?”
“Sometimes … like today, I have to get a blood test.”
Jeffy’s eyes grew wide. “Do they take your blood out?”
“Only a little bit,” I reassured him, giving him the short explanation of what happens when your blood is drawn and feeling so proud of myself for having such an adult conversation with my three-year-old.
“Oh,” Jeffy said, contemplating. “Can you call me from the car after your blood grows back?”
After my chemotherapy and radiation were over, I developed a cough, a low-grade fever, and acute chest pain. If the kids pushed against my solar plexus, I would fight the reflex to pitch them across the room. Walking short distances became a chore, and watching my youngest son poop in his diaper filled me with dread as I contemplated all the steps involved in changing him.
Not knowing what was going on, my radiation oncologist ran tests to make sure I didn’t have an infection. Then my liver count went way up.
A familiar acidic fear bubbled up inside me.
My oncologist, Dr. Matthew Sirott, ordered an abdominal CT scan to look for a possible liver metastasis. Fortunately, the CT was clear—my symptoms were probably just a reaction to the radiation—but it inflamed my thinking about death again. Although I had researched my specific illness and knew I had a 52 percent chance of surviving at least five years, I had never discussed it with Dr. Sirott before. Since I trusted him, I became hell-bent on knowing my prognosis from his perspective.
“Give me the bottom line,” I said bluntly. “I’m a planner; I need to know how long you think I have.”
After telling me “I shouldn’t go there,” Dr. Sirott was straightforward with me: “I don’t really know,” he said. “There are so many new treatments being used and developed, and so I would just plan for the worst and try not to worry about it. You could live a very long time … or you could leave the office today and get hit by a truck.”
His comments struck home with me. The people who are hit by trucks never lose a minute of sleep worrying about it. And as it turned out, I was a candidate for a new, promising chemotherapy called Herceptin, which means my chance of a recurrence could be as low as 12 percent. Now, nearly three years after my diagnosis, I’m thinking far into the future again and am feeling great.
I know that living through this has changed me. I find myself saying over and over that I appreciate things more, and it’s not just a cliché. When was the last time you noticed that your lawn sprinkler makes beautiful little rainbows?
These days, I make decisions differently. I look for enrichment versus status. I stop to watch my sons play with a bug even though I know we’ll be late for school. I take the idea of the five-year plan quite literally: If I died in five years, which of my choices will have had the greatest impact on my sons’ lives after I’m gone? More than anything, I make goals and go for my dreams because—regardless of the state of my health—I hear the faint ticking of a clock.
Important Things to Tell a Child When a Parent Has Cancer
- Mom or Dad isseriously ill.
- Your best understanding of any immediate changes that will occur.
- Use dolls or puppets to help.
- Don’t go past the child’s attention span.
- Don’t go beyond the child’s ability to understand.
-Tell them nothing they did caused the disease.
- Explain who will take care of their needs for now.
-Give lots of detailed information, and answer every question fully.
- Make sure there is someone outside the immediate family with whom they can talk on a continuing basis.
Source: How to Help Children Through a Parent’s Serious Illness, by Kathleen McCue and Ron Bonn (St. Martin’s Press, 1994)