I copy and posted this article from: http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=3716010
purely for the purpose of preserving this crucial piece of my family history.
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?
By Amanda Wolfe
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.
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.
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.”
Chemo, Round Two
She started chemo again just before Christmas 2008. This time her doctor tried a different mix of drugs, which caused different side effects. She became extremely sensitive to heat and pressure, so she couldn’t reach into the oven to grab a tray of Christmas cookies, couldn’t drink hot tea, take hot showers, or wear normal-size socks or pants because they cut off her circulation. There were also times when we had to delay her treatment until her blood counts were up enough so that she could tolerate the chemo. The problem with the irregular schedule was that I couldn’t fly in as easily as I’d done before. I hated that. We spent hours on the phone each day, but it killed me to have to call from hundreds of miles away instead of being able to pop by and take care of things for her. But to be honest, I was also relieved to get a little distance from what was happening, to feel like a normal 25-year-old just for a while. Then I’d feel terribly guilty for being relieved. It’s a struggle all caregivers go through; I know that now.
A Little Breathing Room
Mom was done with chemo, again, in April 2009. Her levels of CA-125 (a blood marker for ovarian cancer) were stable and in the normal range, and her CT scans were clear. At this point we knew better than to think the cancer would never come back, but we were hoping for a longer break, some normalcy. And we got it. Mom went back to work four or five days a week. She was able to get out more, go to family events and dinner with friends. She wanted to lose a few pounds — an unthinkable situation after her size-zero days just the year before. My fiance, Colin, and I took a trip to Ohio in late April, and we hiked to a waterfall my family had often visited when I was a kid. The sun was shining and flowers were peeking out of the brush. Mom was vibrant and happy, bopping down the path with her head of shaggy new hair. I snapped a few photos, thinking, This is my mom. This is exactly how I want to remember her.
By late summer we started to see Mom’s CA-125 levels creep upward again. She had a CT scan, and it showed fluid collecting around her liver. Her oncologist was fairly certain that meant the cancer was back. Damn. By then we had given up talking about a “cure.” She was resigned to going through chemo again and again to keep the tumors at bay, but my sister and I worried about how much more Mom’s body could take. She was still feeling well, and we had a little time to make our treatment decisions, so for a second opinion we took her to Memorial Sloan-Kettering Cancer Center, in New York City, one of the world’s best facilities. We were hoping for a miracle, I suppose — some treatment our (actually quite advanced) cancer center in Ohio wasn’t doing. But the prognosis was the same: The fluid meant that the cancer was probably on her liver. The trip was worth it, though, if only for the happy memories of our few days in New York. We saw a Broadway show, explored downtown Manhattan, and had lunch on the water with a view of the Statue of Liberty. For a little while we could relax in the late-summer sunshine and pretend that the cancer wasn’t coming back.
By fall 2009 the fluid wasn’t just around her liver but was building up in her entire abdominal cavity, creating enormous pressure on her stomach and organs. The pain became unbearable, so they decided to drain her. That’s exactly what it sounds like — a CT scan to pinpoint the fluid pockets and then a big needle into the belly with a tube to draw out the fluid. Luckily it wasn’t that painful. In fact, it was such instant relief that she cried tears of happiness and promptly took herself out to dinner.
But the fluid kept coming back, despite the new chemo. She started having to be drained every week. Then the fluid was red with blood. That was bad for a lot of reasons, most obviously because she was losing a lot of blood. Twice she went to the hospital directly after the draining for a blood and platelet transfusion. She was weak, scared, and confused. “I never thought it would be like this,” she said quietly in the car with me one day. “I just want to die.”
After her second hospital stay in as many weeks (because she was so weak and dehydrated), I e-mailed her oncologist. It was the e-mail I had been dreading for months but knew I’d eventually have to write. There’s no good way to ask a doctor if your mother is dying, but I explained that if he thought she had taken a turn for the worse, I was going to come home to be with her. I could take a leave of absence from work. I was utterly terrified that she would die alone. “Is it time to come home?” I implored. When he e-mailed back that yes, he thought I should come home, I didn’t cry. I didn’t freak out. I just had a numb, sinking feeling — like holding my breath for weeks. Crying would have felt better.
The Final Stretch
How could I tell my mom I was coming home because she was dying? I couldn’t, so I told her I was coming to take care of her until she got well, and there was no stopping me. But I knew it was the last time. I packed two suitcases, made plans to work from home, kissed my fiance good-bye, and flew to Ohio, not knowing how long I’d be there. Those six weeks ended up being the longest — and shortest — of my life.
Mom was remarkably cheerful and healthy looking when I arrived just after New Year’s to spring her from the hospital. Because her fluid had just been drained, she was ravenously hungry and started making excited plans for all the meals we could have. She was craving chicken Marsala and fried oysters. When we got home she immediately asked for her recipe box. Surrounded by a pile of recipes, she picked out her favorites. I sat next to the bed diligently making a massive shopping list. If she wanted all that food, by God she would have it. I spent the next day cooking. I even managed to track down oysters in Ohio in January — exorbitantly expensive, but who cares?
I began to hope. “She’s obviously feeling better,” I told Colin over the phone. “Maybe she can turn the corner and things could be okay.” But then she started filling up with fluid again. It was excruciating for me to see her in pain, not knowing if she would make it to tomorrow. I called my sister, who was now in graduate school in upstate New York, and although Mom fought against “disrupting her studies,” Audrey came home, too.
When Mom’s legs started to swell up until they were almost twice their normal size, I knew her lymph system was shutting down. It was time to surround ourselves with people who could just make her as comfortable as possible. But it’s an incredibly hard decision to stop traditional medical treatment and switch to hospice care. It feels like giving up. Mom knew what was going on, but she was simply not ready to admit that she was dying. She even stubbornly claimed, right up until her very last days, that she’d be around for a long time. That was how she needed to face the situation, so we played along. But something had to give.
After yet another stay in the hospital, a home health nurse took one look at my mom, wrapped her arms around her and said, “Janice, it’s time to call hospice.” Mom broke down. “I thought I was ready to die,” she said. “But I’m not.” We hugged her, sobbing together. By that afternoon, the hospice caseworker and nurses were at our house. Then a local medical-supply company dropped off a bedside commode, an oxygen machine, and a shower chair. Our hospice social worker stopped by to chat. The day after that the chaplain came, then the nurse again. The hospice workers were wonderful; it takes a very special type of person to do that for a living. Even better was the sense of empowerment it gave us. Making the hospice decision helped us feel that, yes, this is terrifying and devastating, but we can do it. We called my mom’s oncologist to tell him that we were going to stop treatment. “I believe in my heart that you are making the right decision,” he said. It was a powerful moment. We knew we were doing the right thing, but it was reassuring to hear that echoed by her doctor.
The next few days were a frenzy of activity followed by a lot of sleepless nights. I had never felt this kind of physical and emotional exhaustion. I was running on empty, barely showering or eating, deeply sad and dreading that the worst was yet to come. At some point a hospice nurse looked me straight in the eye. “It’s an amazing gift you’re giving your mother,” she said. “You know that, right?” Her comment put it all starkly into perspective. “She deserves it,” I said.
There were some lovely moments. The whole family — my aunt and uncle, my cousins, some of their kids — all piled into the bedroom one night to tell funny and outrageous stories. One afternoon we sorted through Mom’s jewelry with her and spread it out on the bed. Together we decided who would get each piece, and she tucked them into envelopes, writing our names and then a little note about where the piece came from or why it was special.
She was remarkably lucid, but she did start to have strange visions in those last few days. She thought the cats were on the ceiling. She was also in an incredible amount of pain. The fluid buildup hadn’t stopped, but there was little more we could do except give her painkillers, including morphine, every few hours. I was extremely concerned about the fluid and blood buildup, now that we weren’t doing blood transfusions. When I spoke to the hospice nurse privately about my concerns that my mother was literally bleeding to death, she said to me with that look in her eyes, “It’s a very quiet way to go.”
Oh. God. That’s what we’re doing here, isn’t it? Jesus. Deep breath. I guess I hadn’t considered exactly how she would die. It was the cancer, of course. But the tumor itself doesn’t really kill the patient; eventually its effects do. All we could do was keep her as comfortable as possible.
The night before my mom died I slept in bed with her while my sister hauled in blankets and pillows to sleep on the floor as if for some bizarre slumber party. In the middle of the night Mom was crying out in pain, so we sat her upright to give her the painkillers. She wasn’t able to talk much by then, but I will always remember that she looked right at my sister and me just a few hours before she died and said, “I love you.”
Early the following morning, my sister and I sat on either side of the bed with her, holding her hand and stroking her head. It was time. She was moaning and not responsive at all anymore. Still, we poured out everything we had wanted to say in the last few days but couldn’t. We told her how very much we loved her. That we’d be okay. That we were so thankful for everything she’d done for us and given us. What a wonderful mother she was. I know that she heard us. Then, at just after 7 a.m. on February 7, 2010, she died. It’s a surreal and terrible thing to watch someone die. It’s unbelievable. Audrey and I just sat in the room with her, hugged each other and cried.
Celebrating Her Life
Mom had been very specific in her requests: She wanted a party. No funeral. No crying. Play ’70s music, eat, and be happy for the life she’d lived. She didn’t want us to remember the frail, swollen, dying woman. She wanted us to remember the good times. We played a slide show to celebrate the woman who built her own physical therapy practice and ran it for nearly 30 years. Who made so many sacrifices to raise my sister and me. Who climbed mountains in Peru and studied with the Incas. Who made her home totally, colorfully unique and was passionate about gardening. Who stubbornly worked all through her chemotherapy treatments until just a month before she died. Who left me a beautiful birthday card. Who gave my sister and me the strength to get through the most profoundly sad and difficult experience of our lives. The woman I miss — every single day — my mom.
Glimmers of Hope
Ovarian cancer is relatively rare: About 21,880 new cases were diagnosed this year, according to the National Cancer Institute, and about 13,850 deaths were reported. “It’s the most lethal gynecological cancer because more than 70 percent of patients are diagnosed at an advanced stage,” says Johnathan M. Lancaster, MD, director of the Department of Women’s Oncology at the Moffitt Cancer Center, in Tampa. The cancer is rarely caught early because women often mistake the symptoms for something else or ignore them. If the cancer has metastasized (usually spreading to the abdomen, lymph nodes, or other parts of the body, as Janice Alexander’s had), five-year survival is less than 30 percent.
There’s no mammogram or Pap-test equivalent for ovarian cancer, but now there’s reason for hope: New research from the MD Anderson Cancer Center as well as a large trial in the United Kingdom show that watching your levels of CA-125 (a biomarker in ovarian-cancer patients used to check for therapy response and recurrence) over time shows promise as a screening tool. Based on your age and blood test score, your doctor would place you in either a low-, intermediate-, or high-risk group. The low-risk group would come back in a year for a follow-up blood test; the intermediate group would repeat the blood test in three months; and the high-risk group would be referred to a specialist for a transvaginal ultrasound test. “This may allow for an earlier diagnosis of ovarian cancer, while it’s still possibly curable,” says Barbara A. Goff, MD, director of gynecologic oncology at the University of Washington.
Until this approach is tested further and put into practice, which could take years, awareness is best, says Dr. Goff. The old thinking is that the disease has no symptoms. “Ovarian cancer had been called the silent killer,” she says. “But that’s been completely debunked by work that I and others have done.”
Be Aware of Symptoms
Patients whose early-stage ovarian cancer is diagnosed (which probably happens by accident while they’re having some other surgery or procedure) often report that they actually did have some early symptoms, says Dr. Lancaster. The medical community may be dismissive of common symptoms, so it’s vital that women advocate for themselves. Dr. Goff advises that if you have any of the following symptoms, especially if you’re over age 50, you should see your doctor for a pelvic exam, a CA-125 blood test, and a transvaginal ultrasound:
Persistent bloating, or having your stomach swell up, similar to how you feel right before your period (“This is not normal after menopause,” Dr. Goff says).
Difficulty eating, or feeling full quickly after a regular-size meal, which can lead to unexplained weight loss.
Pelvic pain or abdominal pain.
Change in bowel function, such as constipation or diarrhea.
Change in urinary symptoms, such as frequency or urgency.
“The symptom should be new to you, something you’ve had for less than a year,” Dr. Goff explains. “For most ovarian-cancer patients it’s something they’ve had for a few months. And it’s a symptom that occurs frequently, daily or every other day. If you’ve had it for 20 years it’s probably not ovarian cancer.”
What You Can Do to Prevent Ovarian Cancer
Taking birth control pills, especially for five to 10 years, can lower the chance of developing ovarian cancer by up to 50 percent, says Dr. Lancaster. “Anything that reduces the number of times you ovulate decreases your risk.” That also includes pregnancy and breastfeeding.
Tubal ligation and hysterectomy can also lower your risk. While these procedures aren’t done for that purpose alone, it is a fringe benefit.
If you’re at high risk because of a family history or because you have a mutation of the BRCA1 or BRCA2 gene, having your ovaries and Fallopian tubes removed prophylactically reduces your chance of getting ovarian cancer by more than 90 percent.
Help and Support
The Ovarian Cancer National Alliance (ovariancancer.org) has a downloadable symptom diary under “Resources.” The organization has helped teach students in 81 medical schools so far about the early symptoms of ovarian cancer through a program called Survivors Teaching Students: Saving Women’s Lives.
Find medical information, news about ovarian cancer and how you can help make a difference at the National Ovarian Cancer Coalition (ovarian.org).
What Happens Now?
Follow along as Amanda Wolfe, a senior editor at LHJ, continues her emotional journey through the aftereffects of her mom’s death, and share your own experiences with ovarian cancer, too, at lhj.com/amanda
Originally published in Ladies’ Home Journal, November 2010.