Dorothy called me later and said the only word she could use to describe the look on Mother’s face was “Whoa!”
She looked at Dorothy and said, “I want to go home.”
Dorothy was so rattled by the tone and force of her voice: “Oh, my goodness. Mom, do you mean your earthly home or do you mean your heavenly home?”
Mom would often say stuff like, “I want to go home,” meaning heaven.
But Mother clarified herself; she said, “I want to go to my house in the Pass.”
Dorothy tried to reason with her, “Well, Mom, you know, the doctors really feel like you need to have more care, and I just don’t know how that’ll work.”
As hard as it was for me to be dealing with pre-treatment and the stress of caring for an aging parent long-distance, Dorothy was on the front lines.
Mom said, “You can do it. You can get people to help you.”
So it was decided. My siblings and I had met and planned, spoken to doctors and looked at the medical facts. But at the end of the day, Lucimarian Roberts was the mother, and it was her life. We could not put her in the facility against her will.
By the time Dorothy called me that evening, she was very upset and very emotional, because she knew what it meant. She was going to have to take time off from work to get Mother situated. She was going to have to find and manage home health-care aides. Fortunately, in recent years Mom had been using a wonderful service called Home Instead. Henrietta was Mom’s primary caregiver from Home Instead. She would run errands with Mom, take her to doctor appointments and do light housework. But Mom’s condition now was more than Henrietta could manage. We also needed hospice care.
Once again, Dorothy’s life was not going to be her own. Imagine if on top of all that, she was having to fly to New York to do preharvesting treatments for me? As a child, in church, I had heard again and again that God does not give us more than we can bear. Watching Dorothy be not only a daughter to our mother, but also her health-care manager and her eyes, ears and hands as each of those things failed, I knew that there was a reason that Sally-Ann was my match.
Chapter 16
Venice
I’ve always enjoyed attending the V Wine Celebration in Napa. It’s a major fund-raiser for the V Foundation for Cancer Research, founded by legendary basketball coach Jim Valvano and ESPN. Jim Valvano was the first to receive the Arthur Ashe Award at the ESPYs, and he died just eight weeks after receiving the award in 1993. As a cancer patient, Jim witnessed how slowly scientific breakthroughs made their way to the bedsides of patients. As a coach, he knew the power of investing in young, brilliant talent. The V Foundation has raised more than $100 million in the two decades since Jim’s death, and that money has gone directly to early-career physicians and scientists at the leading cancer centers all around the country.
The wine event is a lively gala and auction that is held at one of Napa’s finest wineries and is the foundation’s major fund-raiser. As such, it holds a special place in my heart. I so wanted to be there, as in years past, but I just wasn’t up to traveling cross-country. Since I couldn’t be there in person I sent a video. I talked about what it meant for me to receive the same honor as Jim at the ESPYs. That night in 1993, in establishing the V Foundation for Cancer Research, Jim said: “We need your help. I need your help. We need money for research. It may not save my life. It may save my children’s. It may save someone you love.” In the video I then said, “I couldn’t imagine twenty years after Jimmy V’s speech that mine would be one of the lives saved. Because of everyone who responded to his challenge, because of all the donations, research and support.” Thinking of Jim, I went on to say: “Now I need your help for MDS research.” That night they raised $1.2 million in my honor strictly for two grants for MDS research. Talk about make your mess your message.
It was around this time that my friend Jo came up with the idea of the Prayer for Protection bracelet. It was simply a friend saying, “We’ve got to do something. What can we do?” It was simply Jo going, “What can I do? I want Robin to know that we love her, and that we’re thinking of her.” She came up with the idea of putting “Light, Love, Power, Presence,” the key words from the Prayer for Protection, on a bracelet, knowing that these words are so important to me. The prayer my mom had taught me as a small child.
She chose the bright springtime colors of MDS, colors that signify the rebirth that my transplant would bring, and sent it to me. It was a total and wonderful surprise. Passing it around among a few friends, and it’s our little thing. I gave it to my colleagues on the set, and then many watching said, “I want one!” We were like, “Oh, my goodness!” and we teamed up with Be the Match, the bone marrow registry. A simple gesture of love that Jo designed has sold over four hundred thousand bracelets, with every last cent going to Be the Match. So much good from a friend just saying, “What can I do?”
For many months I had plans to help my friend Kim celebrate her fiftieth birthday in Italy. Tuscany, to be exact. The trip was scheduled for mid-August. When I was diagnosed that spring, my doctors asked if I had anything pressing coming up. I told them I had my heart set on going to Italy in August. Kim was there for my fiftieth, and I wanted to be there for hers. It also gave me a goal. If I could be well enough to travel to Italy, then I’d know I had the strength to endure a transplant. At first Gail was a little more onboard with the plan than Sergio. Both of my doctors agreed to do their best to schedule my treatment so I would be in peak condition for the transplant, and for Italy. They couldn’t make any guarantees. It’s not exactly something you can time to the precise moment. They asked me to trust them, and I did. I promised them that if the time came and they felt it would do more harm than good to travel, I would listen to them. Trust is a two-way street.
I struggled with going ahead with my plans or spending that time with Mom in the hospital. One day it looked as if she would be discharged, and the next day it would be anyone’s guess. As I said, Mom was still the boss. She would often kick us out of her hospital room; she was fiercely independent, not wanting to be a burden. As if she ever could be. In the end, my doctors and my siblings felt that with just weeks to go before transplant that it would be a psychological boost for me to get away. What I was about to face was as much mental as it was physical.
Amber and I flew to Florence and, along with a group of Kim’s nearest and dearest, stayed in an old farmhouse in Tuscany. Rome was just a few hours away by car, so one day Amber and I decided to visit the Vatican. My longtime friend Gayle King told me about a wonderful tour guide, Angelo. He was able to get us special access to the Vatican. We spent time in the Pope’s private chapel, where he prays before meeting the masses. I kneeled at the altar and said a prayer. Not for myself but for all the people who had been praying for me and for my mother. I felt plenty of prayers were already being said for me. It was a calming moment that I would later reflect back on, posttransplant, when I was in isolation.
I also enjoyed traveling to Venice. I had never been there before. What a spectacular and special city. Walking out of the train station and seeing the canals, the gondolas, wow! We took a water taxi to a neighboring island, Burano. It’s called the colored island of lace. You should see the bright-colored houses, balconies with multicolored flowers. Side streets are filled with elderly women embroidering the most delicate lace. Such a tranquil, calm setting. Angelo was able to get us a lunch reservation at Trattoria al Gatto Nero. It was the most delicious Italian meal I have ever eaten. The wine was flowing, and the pasta, the fresh local fish and the dessert were perfect. Everyone in the group was wearing the bracelets that Jo had designed. I close my eyes and I’m there again. Serenity now.
It meant so much for me to be there for Kim. Fiftieth-birthday celebrations have become such a rite of passage. Sure, sand is draining from the hourglass, but at fifty you’re still young enough to try new things.
When I was diagnosed with an aggressive form of breast cancer at the age of forty-six, I wasn’
t sure I’d see my fiftieth. Grateful that I did get there, at first I planned this big, elaborate party. I knew I wanted to celebrate on an island. I decided on Vieques, an island-municipality of Puerto Rico. A brand-new hotel was opening just in time for my birthday. Amber’s good friend Jason is a noted event planner. (He escorted her to the Oscars while I was working.) We met, and he had a big board full of details and how people were going to fly in and how I was going to have all these fancy presents waiting for them. It just kept mushrooming. The guest list was out of control. Finally I said, “I’m sorry, this is a lovely idea, but it’s not me. I just want my family and closest friends, all I really want is a candlelight dinner on the beach. I don’t need to do this—who am I trying to impress with this party?” That’s the great thing about turning fifty. You start to truly tap into your authentic self.
So instead we found a place in Turks and Caicos, a villa that had all these different rooms and different bungalows. It was like a small compound. And with me were just the people who I wanted there most. We had so much fun. Just being together. Shortly after returning from the trip I was going to dance on GMA with Maks Chmerkovskiy from Dancing with the Stars. I had been rehearsing with his brother Val for weeks back in New York at their SoHo studio. Before I left on the trip, Val made me a video of our routine so I could continue to learn all the steps. My dance floor in Turks was the sandy beach. One two, cha cha cha.
Amber remembered my saying that all I wanted for my fiftieth was to have dinner on the beach. That was the main thing. Well, it was the day of my birthday celebration. We were all walking on the beach from our villa to the hotel restaurant for lunch. On the beach I saw some workers laying down what seemed to be a dance floor on the beach. It was an overcast day, and we were all bummed about the weather. I remember asking everyone: What do you think that dance floor is for? My friend Julie quickly replied: “Oh, it’s probably for a wedding.”
We went off to lunch, and when it was time for my party it began to rain. The hotel staff members came in golf carts and they took us up to a different villa, and it was beautiful. Colorful balloons and birthday banners. I was wondering why Amber looked so sad, and I said, “What’s wrong? This is gorgeous. Thank you, honey, this is wonderful.” She said, “No, that dance floor on the beach…that was for you. We were having a party on the beach, but it rained.” How sweet was that? She remembered that was all that I wanted—to have dinner and dance with my friends on the beach.
It was great to be out on the beautiful water during our trip. Amber, Lois Ann, Cathy, Scarlett, Linda, Julie, Crystal, Carol, Beth, Bert and I chartered a boat one afternoon. Jel gets seasick, so Jo and Kim stayed on shore with her and went shopping. We had been sailing for a while enjoying rum drinks the crew provided. Bert noticed we were kind of circling, not venturing far from the harbor. Crystal, one of Amber’s closest friends, knows a lot about boats. She knew something was up, too. Crystal went up to the captain and he admitted they really didn’t have a license! I guess he thought, “Let’s get them liquored up on cheap local rum and they’ll never know the difference.” I have to say, we were happy campers. Jel, Jo and Kim were waiting for us on the dock when we returned. They said we were quite a sight. I’m sure we were.
My favorite part of the trip to Turks and Caicos was our breakfast together every morning. Just sitting around, talking, laughing, planning our day. My dear friends are scattered all around the country, from Maine to California. Our time together is precious. We don’t buy each other fancy gifts. We prefer to simply be together and make memories.
Celebrating Kim’s fiftieth in Italy was such a powerful reminder of my own fiftieth birthday in Turks and Caicos. I was so happy that I was able to time my pre-transplant treatment in a way that enabled me to be with my friend on her special day. At the same time, there was a kind of emotional wall that I hit toward the end of my trip to Italy. The entire summer I’d gone through pre-treatment, kept my spirits up and my body moving, because I wanted to go to Italy with my friends. Now that I’d reached that goal, it was time to go back and start the MDS battle in earnest. There was the bone marrow transplant waiting for me and all the recovery that entailed: six months off of the air, while Sally-Ann’s cells would—best-case scenario—find their way into the bone marrow and start making healthy red blood cells, white blood cells and platelets.
I remember reading an excerpt from Pat Summitt’s book in People magazine that was the very definition of the right words at the right time: “I’m interested to see where a combination of faith and science will take me.…With or without this diagnosis, I was going to experience diminishment. We all do. I know God doesn’t take things away to be cruel.…He takes things away to lighten us. He takes things away so we can fly.”
I thought of Pat Summitt’s words as I flew back from Italy and prepared myself to face all that lay ahead. I reminded myself that my load was being lightened. Fly, Robin, Fly.
Chapter 17
Mom
While I was returning from Italy, Dorothy got a call that Mom was in a semi-coma. The oxygen wasn’t releasing from her body so she went into what they call a carbon monoxide coma. Dorothy was so scared, because in the last conversation she’d had with Mom, Mom was still afraid that we were going to place her in the nursing center. Dorothy stood at her bedside at the hospital, telling her over and over again, “Mom, we’re gonna take you home. We’re gonna take you home. You said you didn’t want to be here and we’re gonna take you home.”
When Mom finally regained consciousness, she was in a state of delirium. The doctors later told us that this was because Mom was hallucinating. Dorothy spent the entire night in Mom’s hospital room, and Mom did not sleep at all. Dorothy begged the hospital attendants to give Mother something to help her sleep. Once she’d had some rest, they released her, and Dorothy took her home.
They say when it rains, it pours. On the Gulf Coast, as we know all too well, sometimes when it rains, it storms. Dorothy and her daughters, Jessica and Lauren, were running back and forth to the house, caring for Mom, when Hurricane Isaac rolled up to the Coast.
I could hear the strain in Dorothy’s voice. She had taken a leave from work to care for Mom, and she was at home with our mother from seven in the morning until seven at night. At 7 p.m., a hospice nurse would arrive, and Dorothy would get some sleep. Mom came home with a feeding tube and a whole array of medicines that needed to be administered, and symptoms that needed to be monitored. Dorothy had a little notebook that she carried around with questions she had for Mom’s doctors and all of their responses and instructions. I could look at that little notebook and see how tightly she clenched it; in between the names of medicines I’d never heard of, medical symptoms that none of us could pronounce, there was all this worry and fear and love that was scribbled onto every page.
I kept telling Dorothy, “You’ve got to get more help. You’ve got to get more help.” And I know that she was concerned about the cost. Anyone who has cared for an aging parent knows how costly it can be. Medicare only pays so much, and when you want to stay in your own home, as Momma did, all of that attendant care? That’s on you—and the family. Mom has always been fiercely independent. Never asking or wanting her children to provide for her. Dorothy knew I had the resources to chip in more, but she was resistant to me paying more than what she saw as my fair share. But when your mother is so ill and there is one sibling who is doing the majority of the on-the-ground legwork, it’s not about splitting the bill. I thanked the good Lord in heaven when Dorothy finally let me hire some more care and ease, even a little, the burden she had so generously and lovingly taken on.
On August 28, 2012, I was with Sally-Ann and her husband, Ron, at Memorial Sloan-Kettering as she prepared to donate her stem cells. At the same time Hurricane Isaac was preparing to make landfall on the Gulf Coast. Dorothy and her girls were with Mom and they had already, wisely, had a generator set up at the house in case they lost power.
Sally-Ann was in a hospital
bed, watching her New Orleans TV station on her laptop. Anyone who’s ever been to New Orleans knows that my sister is the Oprah of her market, and the love that the good people of N’awlins have for my big sister is rivaled only by the love she feels for them. Sally-Ann is always watching her local station, even when she’s far away from home. For her, it’s like keeping track of her people; the whole city is her extended family.
I watched in awe as the apheresis machine recycled blood from her body, removing the stem cells into a pouch with my name on it. I remember just staring at the bag, knowing how many in my situation would give anything to see a bag of lifesaving stem cells with their name on it. It took two days for Sally-Ann to have her cells harvested, and this was day two. All I could do was cry. Sally-Ann insisted she wasn’t in any pain, and she didn’t appear to be, but I was still a basket case witnessing such a selfless act.
My dear friends Lois Ann and Cathy had traveled from the West Coast to spend time with me before my upcoming transplant. Although Lois Ann lives on the West Coast, she is a true Southern belle. She was a sorority girl at the University of Alabama. Roll Tide! A mutual friend introduced us in the early 1990s. We’ve been thick as thieves ever since.
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