21 Months with My Mom

I knew almost nothing about ovarian cancer when my mother was diagnosed. Would I be able to take care of her when she needed me most?
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Hearing the News

It's my 27th birthday, the first without my mom, and I'm about to read the card she left for me. Last Christmas she made a whole stack of cards for my younger sister, Audrey, and me: one for every birthday and holiday she knew she'd miss. She was so proud of us -- me, a magazine editor in New York City, and Audrey, a museum-studies graduate student. I want to be strong and brave, spirited and optimistic as Mom was. Sometimes I think I'm doing okay. And then I glance at something with her handwriting on it (like this card), or I see an e-mail from someone named Janice, and I break down.

On May 6, 2008, my 54-year-old mom, Janice Alexander, was diagnosed with ovarian cancer. Just 21 months later she died. As a physical therapist she lived to help others, and she was good at it. When I'm in my hometown of Dover, Ohio, I can't leave the house without running into at least one person who says, "Your mother fixed me," "She was magic," or "She knew what was wrong with me when the doctors couldn't figure it out." I wish she could have used some of that healing power on herself.

The News

It was a beautiful spring day when Audrey, who was then 20 and in college a few hours away from our hometown, called and told me the devastating news: Mom had stage IIIC ovarian cancer. I was floored. My mom was healthy, worked hard, and loved to hike and garden. Surely there'd been a mistake! But it turned out that she'd ignored her symptoms for months. She had been having chronic pain in her lower abdomen, which she figured was because of digestive troubles or a groin pull from gardening. Eventually a large, painful lump forced her to see her family doctor, who sent her to the emergency room, where ultrasounds, a CT scan, and a colonoscopy confirmed that the lump and other masses were tumors. She needed emergency surgery to confirm the worst. She's young and strong, I thought at first. She'll be okay. But all you have to do is Google her condition to know it's not good.

The surgeon performed a radical hysterectomy (removal of the uterus, ovaries, Fallopian tubes, and related lymph nodes) and got as much of the cancer as possible. That included doing a colostomy, because the tumor had wrapped around part of Mom's bowel. "So, what is a colostomy exactly?" I asked my sister when she told me over the phone. "Um, there's literally a part of her bowel sticking out of her stomach," she said. "And there's a bag attached, for the business." Oh. Well then. Mom's not going to like that. Our initial confusion seems ironic now: In an emergency room 20 months later, a nurse would ask me to attach my mother's colostomy bag for her, because I had gotten so good at it.

I got on a plane immediately and headed home to Ohio, where Mom lived alone. She and my dad had divorced when I was 11. They were on decent terms; he even lived just two blocks away on the same street. Dad was supportive of my sister and me, but this was not his territory. My aunt and her family, who lived in the area, were great -- they stayed with my sister while Mom was in surgery and they picked me up from the airport. But I had to be there for Mom. I was older and it felt that I was somehow in charge.

When I got there I was struck by how very thin she was. There's nothing that hits you in the gut like seeing your mother lying in a hospital bed: pale, thin, frail. In the months before the diagnosis she had lost a lot of weight. She thought it was just stress. In retrospect all of her symptoms added up: unexplained weight loss, a change in bowel movements, abdominal pain. She downplayed them, to us and to herself. To find out that those seemingly unrelated things added up to cancer? It was shocking beyond belief.

The Recovery

We cried, we hugged, we tried to absorb the news. At one point my mom asked one of her doctors if she was terminal. He was visibly uncomfortable with the question. "No," he said. But -- and we could all sense that qualifier coming -- the prognosis wasn't good. She was as close to the line as you could be without being classified as stage IV (there is no stage V).

I stayed with my mom for two weeks after the surgery. Before she could begin chemotherapy, she had to heal. We had to cope with the usual things you go through while recovering from major surgery (pain, risk of infection, fatigue), plus the fact that all of her bowel movements went into a bag, which needed to be drained or changed often. The process of figuring out what the heck we were doing was slow and messy. Mom cried a lot. More than the cancer, the damned colostomy was the enemy. It was reversible, the doctors said. She clung to that hope.

The First Round of Chemo

The doctors removed all of my mom's visible tumors. But microscopic cancer cells almost always remain, which meant that she needed chemotherapy drugs to wipe them out. Here was the game plan: Starting in late May she'd get eight rounds of chemo, one every three weeks. So my sister and I would switch off. She'd work it out with her professors to skip class for her "shifts," and I'd take vacation time and fly in from New York for mine.

Mom's chemo was a communal event. There were lounge chairs in a large light-filled room, a radio (which was always playing country, to my mother's chagrin), blankets, pillows, magazines, and treats. We got to know the other patients and their families. The routine was always the same: blood work, IV, wait. Depending on how the day went, it could take five to seven hours. I worked on my laptop while she read or slept.

Mom wasn't afraid of losing her hair. In fact, earlier we had gone to a wig store, and while it wasn't exactly a fabulous spa day, it was fun to try on different styles and snap photos. But then her hair actually started to fall out and she was almost bald, except for a few long hairs. It wasn't a great look. "Mom, don't you want to cut those hairs off?" we would gently ask. "Nope!" she'd cheerfully reply. "I figure whatever hair is stubborn enough to stick around, it should get to stay." She had a nice wig and a growing collection of scarves and hats, but they were scratchy and hot. Unless she knew it would really make someone uncomfortable, she often went au naturel.

The Second Surgery

After the chemo, Mom gained some weight and looked much healthier. She was eager to get the colostomy reversed, so she was scheduled for surgery in early November 2008. Her general surgeon would reconnect the bowel, and while they were in there, her gynecologic oncologist would do a "second look" procedure to determine whether the cancer was still present. Unfortunately, it was bad news on both fronts: The surgeon couldn't reconnect the bowel completely and, worse, they found more cancer in her abdominal cavity. And that would mean more chemo. I knew from all the research I'd done that ovarian cancer almost always recurs, even after chemo. But you can't prepare for seeing your mom crumble under the weight of a double whammy like this.

This time the healing process was harder, too, since her body had been through so much already. She was weak, upset, in pain. Her incision site got infected, and that was not pretty. In fact, the fix seemed downright barbaric: They opened it back up, then stuffed sterile gauze in it, which had to be changed at least once a day. And guess who got the honors? I once fainted after a pin-prick blood draw, and they were asking me to do what? It's amazing what you're capable of when you have no choice. So I was back on 24/7 nurse duty. After one 3 a.m. wake-up call, Mom looked at me fussing over her, smiled, and said, "You're going to be a great mom." I think she knew, even then, that she wouldn't be around to meet her grandkids. It seemed like her way of saying, "You'll be okay."

Continued on page 2:  Letting Go

 

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