IT HAPPENED TO ME: My Mom Hid Her Cancer from My Family for Over a Decade

Early in the year that I turned 17, my mom began making frequent trips to the emergency room.
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Jessica Stinner
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Early in the year that I turned 17, my mom began making frequent trips to the emergency room.

Early in the year that I turned 17, my mom began making frequent trips to the emergency room. She suffered from sudden bouts of uncontrollable vaginal bleeding that caused her to soak through an overnight maxi pad in a matter of minutes. 

These episodes left her badly anemic and wary of going out in public. Her OB/GYN attributed the problem, at first, to menopause, and then to fibroids. Due to the amount of blood my mom was losing, she and the doctor decided that a hysterectomy would be the best course of action.

My mom and I were always close, and I was more nervous about her undergoing surgery than she seemed to be. She was never the sort of person to show vulnerability, and even now I can count the number of times I've seen her cry on one hand. 

She'd delivered two of her three children via caesarean and assured me that this procedure was no big deal. In her own words, she wasn't going anywhere anytime soon. Her calmness and conviction were enough to quell my anxieties. She scheduled the procedure for early June, just two weeks after my birthday.

She was intent on making my birthday special, because we wouldn't be able to do much over the summer while she recovered. My 17-year-old self couldn't dream up anything more special than renting a hotel room with three of my closest friends, unsupervised. We took advantage of the situation to play hide-and-seek in stairwells, run rampant through the hallways, and steal balloons from a wedding in the ballroom. I also experienced my first real lesbian kiss. Actually, it was my first kiss in general. These were exciting times in my young life.

For as close as I was to my mom, I was frequently at odds with my dad. His short temper put me on edge and, when my mom went in for surgery, he was even more tense and snappish than usual. The procedure was supposed to be laparoscopic, but her tumors were larger than anticipated. It ended up being a four-hour ordeal, during which the doctor also extracted an ovary that was somehow entangled in the mess. 

My dad called me from the hospital to tell me. I asked if it was cancer. He assured me that it wasn't -- the tumors were benign, and my mom was on the road to recovery. I held my tongue and tried to be extra nice to him when he took me to visit her in the hospital.

She came home after a few days, but continued to struggle with anemia for the next several months and as a result, had very little energy. I remember being frustrated – I didn't drive, and she was my primary mode of transportation. But I was mature enough to know that it wasn't her fault. 

Throughout the summer, I busied myself by writing and distributing a poetry zine to friends, watching subtitled anime, and bumming rides to Savage Garden concerts. I obsessed over a girl I met on the Internet, took an Amtrak out of state to meet her in August, and had a dramatic falling-out with her which plunged me into a self-indulgent depression for most of autumn.

Basically, I continued to live a fairly normal teenage life, if such a thing even exists. It wasn't until over 10 years later that I found out how amazing it was that I was able to do so.

Mom and I in 2010.

My mom and me, just a few months after her surgery.

My brother is 10 years younger than me and at least 10 times more rebellious. He had a tumultuous relationship with both of my parents, and when he was 18, he announced that he was moving out of their house. 

He decided to rent an apartment with three other people: a girl he'd been dating for all of four months, and two complete strangers. To say that my mom didn't approve of his impulsive plan would be an understatement, and the two of them quarreled over the issue to the point where they stopped speaking. I'd been living away from home for several years by this point, and as a neutral party, I got the brunt of everyone's venting. After a few weeks of playing go-between I decided it was time for us to all sit down in person and have a civil discussion.

The three of us met at my mom's office. I was ready to lay down the ground rules: no yelling, no name-calling, no “always” and no “never” statements.

But before I could begin my speech, my mom said, “I have something to show you. Something that will help make sense of your childhoods.” With that, she literally crawled into a cubby-hole to retrieve said something. 

My first panicked, irrational thought was that she was hiding human remains. She did have a morbid fascination with watching human autopsies on "Discovery Health," as well as a temper to be reckoned with. But instead of a severed hand, she produced a weathered manila envelope.

“These are the scans I had to have every three months,” she said, “to make sure the cancer didn't come back.”

I immediately realized the cancer must have been the reason for her hysterectomy, but there were still a million questions: How bad had it really been? Was she on chemo? How on earth did she ever manage to hide it from us, and why? Could it still come back?

She told us she had leiomyosarcoma, a rare-but-aggressive cancer that affects smooth muscle tissue. The specialist she saw after her surgery had given a grim prognosis based on the size of her tumor (a whopping eight centimeters in diameter). He said she had a 30 percent chance of surviving the next five years. 

Leiomyosarcoma typically doesn't respond to chemotherapy or radiation -– the best treatment is complete removal of the tumor and surrounding tissues –-  so there was nothing she could do except sit and wait for possible metastases. Surgeries to remove such metastases are often debilitating, and ultimately unsuccessful.

The only other person in my family to know about the cancer was my dad, but my mom withheld the severity of her prognosis from him. I remember him being strangely protective during the time, and admonishing me for the smallest grievance or snarky remark levied in her direction. 

He wasn't technologically savvy, which probably was a blessing, as he was spared the plethora of horror stories that leiomyosarcoma message boards and chat groups were (and still are) awash with. My mom busied herself reading these stories, and with each one a little more hope for a full recovery was dashed. 

Resigning herself to the notion that suffering and death might be inevitable, she was determined that her children would live as normal a life as possible for as long as possible.

For a while, she got her CT scans religiously, and then she stopped. Living in constant limbo, waiting for bad news, was too depressing. So she pushed the cancer to the back of her mind, and tried to live as normally as she could. I cannot even begin to imagine what happened in her psyche during that time, but months slowly turned into years and she realized that maybe she wasn't going to die after all. Maybe she had beaten the odds. 

By the time of her revelation to us, she was nearly 11 years cancer-free, and the odds of staying that way were finally in her favor.

Meanwhile, my brother and I both felt as if the metaphorical carpet had been yanked from beneath our feet. I started making a timeline in my mind, overlapping the events of my own life with her diagnosis. It brought into sharp focus all the times she seemed distant and out of touch as I transitioned into adulthood. 

I cried, realizing how selfish I'd been – how absorbed I was in my own drama, oblivious to her quiet suffering. 

“That's the way I wanted it,” she reassured me. “I wanted you to live your life without worrying about mine.” 

I felt a flood of gratitude -- and absolute forgiveness -- for all the times she had been a less-than-stellar parent.

My brother, however, was angry. He was only seven at the time of her diagnosis, and her inward withdrawal had hurt him far more than me. He was bitter about being lied to, though my mom argued that a 7-year-old doesn't have the emotional facilities to deal with the possibility of a terminally-ill parent. He also viewed her revelation as a manipulative ploy; a last-ditch attempt to keep him from moving. And it certainly didn't stop him in the end.

I can understand how he feels and I can't blame him, but I can't bring myself to blame my mom for her years of silence, either. My initial overwhelming admiration of her, as some saintly, self-sacrificing figure, wore off during the weeks that followed her confession. 

Just like any parent, she's had her triumphs and her shortcomings. But my admiration was replaced by a new awareness of her complexity and humanity, and the complexity of family in general. 

My dad and I are on far better terms these days, but like my mom, he's not fond of discussing uncomfortable emotions. Consequently, I've never found out how the ordeal affected him -- or if he even knows, to this day, how easily he could have become a single parent. My mom and my brother are on better terms as well, though he is still distrustful and keeps her at arm's length.

Instead of making me distrustful, this awareness reminds me to conduct myself with an open heart, with family and strangers alike. I am reminded of a quote, the origin of which is debated, but the wisdom of which stands: “Be kinder than necessary, because everyone is fighting some kind of battle.”

My complex, human mom and an older, wiser me.

My complex, human mom and an older, wiser me.