Mom looked shattered when she and Dad asked my sister and me to join them in the formal living room. From what I remember, somebody, likely my Dad, told us that Mom was going to have surgery the following day and she would probably be in the hospital for 6-7 days as she recovered. My parents said they weren't 100% positive. Still, the doctors thought it was likely that the lump my mother discovered in her breast was cancerous. If that was the case, they were going to do an immediate modified radical mastectomy. And they said they believed Mom would be alright after she recovered.
It was Sunday night in November 1983. I was 13, and Tracey was 9. I don't remember the color of the couch. I don't know if we cried. But I remember the room and the fear and the anxiety. There was nothing my sister and I could do other than hug our mom. We didn't know anyone else whose mom had breast cancer - or any other cancer, for that matter. Our grandparents were flying up to support Mom. All we could do was wait and see. We went to school on Monday.
Monday afternoon, Dad called to say it was cancer; they'd done the surgery, and Mom was recovering well. The doctors were sure they got it all, as it was small and early. With the definitive diagnosis, I was devastated. My first thought was that my mom was going to die. Cancer is disruptive. Cancer is deadly. My second emotional reaction was about how unfair it felt that my healthy, active 36-year-old physical education and health teacher who just returned to working full-time after 13 years of being a full-time, stay-at-home mom got cancer three months into her new job. She was excited to return to teaching and coaching - she was even teaching some of my camp friends. I felt cancer was robbing her of her independence and identity.
I was angry. It wasn't right. It wasn't just. Mom didn't smoke. Mom didn't drink. Mom exercised. Mom was fit. Mom wasn't supposed to get cancer. My mother had a beautiful figure, and surgeons were going to carve up her body to remove things that never should have been there. It wasn't long before my worries expanded to thoughts about how this would impact my life.
Mom and I were close. She was easy to talk to and genuinely interested in my life - even the trivialities. She recognized that my teenage challenges with teachers, friends, and crushes were all significant to me, and consequently, they were important to her. It was affectionate and fun, even if we shared People Magazine and casually talked about celebrity stories. With my mother's cancer, virtually everything in my life felt insignificant. Compared to a life-threatening, body-deforming, unpredictable illness, who cares if I was upset about the grade on a test or if a boy didn't mirror my interest? I felt that it was disrespectful to even talk about such minor problems. I felt guilty thinking about the logistics of my life - getting to and from gymnastics, religious school, or friends' homes. That didn't make my feelings go away - it just ensured I wouldn't talk about them with anyone because I was embarrassed to think of myself at all when Mom had cancer. My grief over losing my closest confidant felt selfish, and I grieved alone. I cried for my mother and her pain. I was sad for my Dad and fearful of how I would trigger his anger towards me as he had few other mechanisms to express his emotions. It felt inevitable that I would do or say something wrong (such as asking how to get to gymnastics or religious school). He would begin a tirade about how selfish I am and how I should think of someone other than myself. This particular tirade was familiar - a weekly occurrence since I was about five years old. I knew it would get worse with Mom's cancer, and I wanted to protect my sister from it even if I couldn't protect myself.
I isolated myself further from my classmates, who barely tolerated me, and I didn't trust them to be supportive. My maternal grandparents flew up for Mom's surgery, and my grandmother was a good listener. Still, she was primarily concerned about my mother, and I didn't want to worry her about my fears or issues. The person who supported me the most was Dot Haley (of blessed memory), an older woman who stayed with Tracey and me when my parents vacationed alone once a year. Mom and Dad arranged for Dot to stay with us while Mom was in the hospital. Dot was a huge personality who suffered no fools. When Dad told me over the phone after Mom's surgery that it was cancer, I hung up and started crying hysterically. Dot hugged me and, in no uncertain terms, told me to pull myself together. I think I was "allowed" to cry for about two minutes, and then Dot said that's enough. Dot stayed with us until Mom came home from the hospital and kept the household running while asking my sister and me about our lives but with the expectation that we would buck up and cope. Dot clearly said we were not to worry our parents because they had enough on their minds right now. I needed someone to remind me that I was strong and could handle whatever we faced. Dot was likely the first person, besides my parents, who was confident I could hit this and any other curveball.
It took a few days longer for me to start worrying about my own cancer risk and what that meant to my dreams.
My plan, at thirteen, was to graduate high school, go to a good college, get a graduate degree, and build a successful and independent career while also finding a loving partner and raising a family. I wanted to have children, but I did not want to stay home with them as my mother did. Years of observing the tension and arguments over money in my childhood home convinced me to be financially equal to my partner and economically independent of my parents. None of my plans accounted for a massive interruption in the middle of my thirties to fight breast cancer or, worse, that my life would only last for 36 years and not the 90 or so I was expecting. Suddenly, my well-constructed and orderly life plan had unknown risks. No amount of hard work and healthy living could eliminate the breast cancer risk. If it could, there was no way my extraordinarily healthy mother would be facing this disease.
Shortly after my emotional reaction, I began to seek answers to why my mother had breast cancer, her prospects, and what I could do to protect myself. I didn't know it then, but I've since learned that when I sense or see a curveball coming, I seek information - I understand everything I can as soon as possible. I found news articles in the library and Discover magazine that were optimistic that early-stage cancers were treatable and patients should live long lives. This data mollified my fears - Mom would be okay. I didn't realize that this would be only the initiation of our family's extensive experience with cancer curveballs, particularly breast cancer. It would ultimately touch my mom, my sister, and me.
Mom recovered with multiple reconstructive surgeries. To her, her reconstructed breast never looked quite right. She was herself - vibrant, athletic, and engaged with us. Then, in March 1985, on a routine checkup, a bump my mom thought was something amiss in her implant turned out to be a small cancerous growth. The cancer was back. Later, as an adult, I learned the difference between metastasis and loco-regional recurrence - hers was loco-regional (i.e., a 2nd occurrence, as opposed to spreading), and we are fortunate. My mother had gone to the plastic surgeon alone because she expected this to be a routine visit. She didn't want my father to take time off from running his real estate development company for something insignificant. My father battled traffic from his offices near our home in Holmdel, New Jersey (central Jersey - northern shore) to Manhattan to be with her. He determined he would never again not attend a cancer-related doctor's appointment with her. At the time, I watched my parents cry, hold each other, and appear incredibly vulnerable and scared. My parents were like a planet with my sister and me as the orbiting moons pulled by gravity to be close but held off from their tight-knit partnership. They told us that night, when they returned from New York City, my parents didn't want questions because they didn't have answers. Mom was reassuring that it was a small thing, but Dad didn't believe she was out of the woods in spite of having had the most aggressive surgery two years earlier to eradicate the disease. My Dad reacted to his emotions by getting mad, and I was unusually adept at drawing his anger towards me.
My mom was the intermediary between my Dad and I. Her new diagnosis left me exposed and without an ally when Dad was triggered. My sister did her best to stay out of Dad's line of fire and would console me when I cried. For most of my teenage years, I genuinely couldn't understand what I could do that would make him stop yelling at me - I got good grades, was a three-sport athlete, was in the Honor Society, and didn't drink or smoke or do drugs. I didn't have a party-oriented social life, so I wasn't out late. I didn't appreciate how he talked about his house, cars, and boat, and my mother wasn't considered an equal contributor. That was likely pretty annoying from a teenager, and I know now that wasn't my fight. He would be furious if papers were left out or my room was messy. Multiple times, I found my bed and everything on my desk dumped into the middle of my bedroom. I was hurt, angry, and dismayed. My Dad’s outbursts felt patently unfair and unpredictable. Asking for a ride anywhere was a surefire way to trigger a rant about my selfishness. I doubt there were any 17-year-olds in New Jersey more excited and relieved to get their driver's license, but that was 18 months away from my mother's second diagnosis. I felt all my fears and shock while trying to avoid, unsuccessfully, triggering my father's anger. As an adult, I recognize that my father felt immense stress to provide for and protect my mother and that I didn't have the emotional intelligence to know when was the right or wrong time to ask about anything. We were simply oil and water. Dad was also very loving and cared deeply about our family. He was very proud of both me and my sister. After I left for college in 1988, he was diagnosed and treated for manic depression, which explained a lot of my childhood. The treatment made him feel much better and, in combination with my living 1000 miles away in Michigan, significantly, but not totally, reduced the frequency of our conflicts.
In 1985, We learned that mom would need a year of chemotherapy with a five-week break in the middle for radiation.
My mom asked me to make dinners on chemo nights. My father doesn't cook. My parents didn't have a community that would provide meals. My sister was only twelve and helped me. I very much wanted to avoid Dad accusing me of being selfish, so I assumed responsibility for creating normalcy when Mom was recovering from chemo. My Dad is a very picky eater, which made things easier in some ways because the universe of possible meals was relatively small. Mom still did the grocery shopping and told me what to make for dinner on her chemo days. I had to time the dinner right so that everything was hot when Dad wanted to eat and not dried out from sitting on the hot plate too long. Dad wasn't terribly consistent about his arrival times. I felt like I was playing Russian roulette with dinner, hoping I got it right and my Dad wouldn't yell at me for something trivial. It was another experience that separated me from my peers. Even in college, I had difficulty being compassionate about the normal emotions my peers felt over what I judged were trivial. It seems like Dot Haley's mindset stayed with me, which helped me survive but didn't make me likable.
She lost her hair and wore wigs and turbans - we made it no big deal. Mom and Dad were left to manage her side effects as best we could. They didn’t want to upset us by sharing how she was feeling. The hair loss, fatigue, and puffy face were impossible to hide. We reassured Mom that she was still beautiful (it was true) and that she could rest whenever she needed.
My mom had chemotherapy every three weeks on Fridays in addition to daily oral chemotherapy and steroids. She and my dad would drive from central New Jersey to Cornell Medical Center on the east side of Manhattan for her infusions. I was a multi-sport varsity athlete and honor student, so by the time I got home after 6 pm, Mom was already in her room, in bed, and she didn't invite me to visit her there. Mom felt lousy and didn't want me or Tracey to see her weak and sick. I focused on the tasks that needed to be done and not making Mom feel worse. It was bad enough that she would lose her hair, and her slender face would become round and puffy. I focused on my belief that everything happening to her was temporary. My research habit alleviated my worries and anxieties because her chemotherapy and radiation were prophylactic to eliminate any microscopic remnants of cancer. The doctors had not seen any evidence that there were any cancer cells in my mother’s body but since she was young and healthy, they wanted extra insurance. I thought the treatment was barbaric torture but necessary.
Those Friday nights were tough. I'd come home after being at school for 11-12 hours and start dinner. It was essential to my father that we continue to have our everyday dinners - protein, starch, and salad. His tastes were simple, and it was easy to cook for him. The challenge was an unpredictable curveball because it wasn't clear when he would come home from work, and he wanted dinner coming out of the oven/grill/stove as he walked in the door. He would be triggered if it was cold or had to wait because dinner wasn't ready. If he were triggered, he would yell at me, which was something I worked hard to avoid. I prepared with my best guess for when he'd arrive and leveraged our hot plate warmer to buy myself some flexibility.
The worst part was eating dinner. The three of us sat at the table for dinner with Mom's vacant seat. My Dad would torture himself, often out loud, with some version of"This is what life will be like if your mother dies. "Every three weeks on Friday, when my mom had chemo, that was the monologue. He didn't have tools, words, or friends to help him face his fears, so they came out at the dinner table. I learned to eat quickly and quietly to minimize the duration of this experience. I sympathized with him and his resentment that my feelings and fears had nowhere to surface. I wasn't going to risk upsetting my sister or grandparents with what I rationally determined were unfounded fears. I learned to manage my emotions and rationally argue my feelings into submission. My Dad and I were living an inversion of who is the supporter and who is supported during these Friday dinners. I still eat too fast.
Rationally, I didn't think my mother was going to die, and I felt that if we could get through this year, she'd be alright, and so would we. Looking back forty years later, I appreciate that we were fortunate. Now, I know many stories of women whose cancer returned undetected and spread. Their outcomes were not good. The fact that my mother diligently scheduled and attended her regular follow-up appointments with her doctor at Cornell Medical and that the doctor palpated the mass and removed it before it spread was a tribute to my mother's diligence and doctor's attention to detail. Her diligence inspired my own throughout my life because I understood the benefits of detecting breast cancer early. There was no evidence that her cancer had spread. The chemo and radiation recommended would ideally destroy any remaining cancer. It was prophylactic but not optional. The steroids were to bolster her immune system against the chemo because that poison kills everything - not just cancer. Cancer cells are more susceptible, but chemo isn't a precision-targeted drug that only impacts cancer cells. Today's chemo regimens are more closely targeted to the pathology of cancer and get better results with lighter side effects - but chemo is about systemic treatment, and the drugs impact multiple body systems.
My father's fear felt irrational and palpable. Still, I appreciated it because he feels my mother is his soul mate, and the idea that they would not grow old together saddens him deeply. His love for my mother and reliance on their union was intense and touching. Still, I found myself in the role of an elder trying to help ease his anxiety with compassion and logic. I felt sad again that my strong, capable father was so frightened. I reminded myself that the data indicated that my mother would survive and thrive. My father still ruminates and believes he is helping himself by imagining the worst-case scenario and how that would feel. He believes that experiencing awful feelings can be a form of vaccination, but it doesn't help. It makes him feel worse because of what might happen. Instead of being present with what is happening and how he wants to deal with his feelings about the current situation, he tortures himself with how much worse it might become.
I quickly determined that I had no control over the future curveballs I might see, such as my mother's death or my battle with cancer. I decided that it would be better for me to concentrate my energy on the current curveball of my mother's recurrence. Once past an unexpected challenge, I learned to invest in building my strengths and resources to make hitting future curveballs easier. Simulating the feelings of the worst possible outcome clouds my vision. It handicaps my mind's ability to generate viable solutions. I've since learned that happens because the limbic system's parasympathetic response becomes overactive or sustained. Neuroscience shows that adrenaline and cortisol surge in response to actual or imagined threats. Those hormones are terrific when you need to outrun a bear or lift a car off a loved one. Those survival reactions do not benefit prolonged skill building, critical thinking, or planning.
One night, early in my mom's chemo treatment, Dad and I were watching a TV show when his emotions overcame him, and he started to cry in the seat next to me. I cannot imagine feeling that alone, and that scared that you become emotionally vulnerable in front of your 15-year-old daughter. I felt sad that he was so sad and tried to offer comfort. I wasn't ashamed that he was emotional, and I didn't want him to feel embarrassed. Some part of me was honored that he was comfortable enough to let down his guard with me. Of course, I had been worried about my mother and scared of triggering my father, but I hadn't appreciated the depths of his fears and sadness. I held him as he cried. My mom is the love of his life. She is his person. No one is more important to him than her (and I know he'd run through fire for his daughters). He felt betrayed by cancer. My father and I are both confident and competent. We like being in control and feel most anxious when we cannot make and execute a logical plan. I empathized with him. My research had convinced me that Mom was going to live. Still, I instinctively knew that showering Dad with facts and statistics wouldn't be as helpful as a hug.
After her first diagnosis, my parents chose the most aggressive treatment path suggested by the doctors. Cancer was supposed to be in the rearview mirror. Cancer was a curveball they believed they swung at and hit out of the park in 1983. The second curveball so soon after the first felt random and unfair - it derailed their lives. It brought forth my father's worst anxious expectations. As an adult, I feel tremendous compassion for them and sadness that they didn't feel a community supporting them. They had to play a game they thought they had won without a coach or people in the dugout to help.
As a teenager, I felt that I couldn't be a kid. I had to be an adult at 15. The implications if I did something irresponsible were that I would be making the cancer curveball more extreme. If I added my emotions on top of my parents, I'd make the ride worse. I armored myself. Still, I'm much more comfortable giving support than asking for it today. My tolerance to being seen as a victim or weak is very low because I felt I had handled some pretty lousy shit and made it through. I kept my grades high. I continued Varsity in three sports. I didn't drink, smoke, or experiment with drugs because the ramifications if something went wrong were huge in my mind. I also didn't have a social life that created peer pressure to experiment. Rebellion was not an option - how could I do that to my parents while my mom battled cancer? I was a pretty straight-laced teenager.
My extended family knew what was happening but were not sources of emotional support for me. My mother's brother and his wife lived far away in Los Angeles. My uncle wasn't emotionally expressive; he was my father's best friend. In my mind, Uncle Eric was Dad's person. Aunt Posie was sweet, but we weren't confidants. My father's brother, Robert, was very close to my parents but a mess in his life, so much so that as a sophomore in high school, I had more confidence in my judgment than his and didn't turn to him for support. My father's sister is not close with any of us - she's 13 years younger than my Dad and was in the midst of her divorce and new love affair. We weren't close.
My only first cousin, Jennifer, lived in Texas and visited in the summers. I don't remember, but she tried to be supportive. I did have an excellent and stable relationship with my boyfriend of 18 months, Rob. Rob wanted to support me. He was a good listener and compassionate. Neither Rob nor Jennifer or my camp friends had ever dealt with cancer before (they were 16, after all) and didn't know what to say or do. I still felt alone with my feelings, my father's feelings, and my need to keep things regular for my younger sister. It was a lot. My parents had a therapist, but my sister and I did not. My guidance counselor was supportive in the "oh dear, that's a shame; I'm sure she'll be alright" type of support. Despite my friends' valiant efforts, I didn't feel someone understood how I felt and could support me. I had to handle my feelings myself. My mother's treatment outlasted Rob and me. I still think he's a great guy who found himself in an impossible situation.
My parents felt very alone. In the 1980s, cancer was whispered about as if it was contagious and could be transmitted. We've come a long way. We made it through the year, and today, Mom is 76, vibrant, athletic, and engaged as ever. She's amazing.
My mother's two cancer curveballs and the curveballs fate (or genetics) threw at her and all of us during her treatment defined my teenage years. My mother's cancer shaped my friendships because some people could be counted upon while most could not. I built a well of self-reliance and resilience. I knew what an unavoidable crisis looked like and felt like.
Fast forward ten years, and scientists announce they've discovered the genetic breast cancer mutations - BRCA1 and BRCA2. Those mutations are significantly more prevalent in my Ashkenazi Jewish community. I assumed that we had the mutation even though we didn't have evidence of any female ancestors having breast cancer - my mom was the only woman of her generation, as was my maternal grandmother. My mom was the only breast cancer patient. So, I still thought it was probably in our genes, although I didn't think about cancer all that often. I did self-exams and insisted my OB-GYN do breast exams at every pregnancy appointment. The specter of cancer faded to a faint, albeit noticeable memory that came up any time someone else I knew was diagnosed. My concern about that curveball was a distant thought shunted off to the far reaches of my mind.
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