21 Months with My Mom
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.
Originally published in Ladies' Home Journal, November 2010.