Everybody's Got Something

by Roberts, Robin

  Early in the morning

  It’s the dawn of a new day

  New hopes new dreams new ways

  I open up my eyes and

  I open up my mind and

  I wonder how life will surprise me today

  Early in the morning

  It’s the dawn of a new day

  New hopes new dreams new ways

  I open up my heart and

  I’m gon’ do my part and

  Make this a positively beautiful day

  There was only one moment when I threw my weight around. I had a room picked out, but I was admitted into the hospital later than expected (because of Mom’s funeral), so they gave me a different room. But I needed that window. I knew how my spirit would have crumpled without a view. I know that it’s not always possible in a hospital, given cost issues and insurance drama. But as patients, we often put up with what we don’t want because we don’t want to be a bother. I’m telling you as someone who has faced a life-threatening illness, not once, but twice: Be a bother. Or better yet, find a family member or a friend who’s good at that stuff, and let her or him be a bother on your behalf. Remember, there are no bonus points for being mild and meek when you’re fighting for your life.

  I think I was still feeling the party spirit because I remember, early in the chemo pre-treatment, setting up a contraband drawer in my room. I asked my friends to sneak in a Gray’s Papaya hot dog. Boy did I pay the price for that hot dog. But half the fun was sneaking it in and half the fun was how good it tasted.

  It was so soon after my mother’s funeral, yet I had to shift my focus entirely to ten days of punishing chemotherapy that would prepare my body for the transplant that, the good Lord willing, would save my life.

  Amber did a brilliant job of rallying my friends to keep my spirits and energy up. As she tells it:

  The most helpful for Robin (and myself) was to have, set in place, before checking into the hospital a rotating calendar of family and friends to come in and visit. We sent out an e-mail with the dates of the transplant and had them pick and choose their weekends. Surprisingly it all came together quite easy. This gave Robin something to look forward to while giving family and friends the sense of truly helping out.

  Along with their smiling faces, gifts would appear that would brighten Robin’s day. My best girlfriend Crystal and I set out to buy decorations for her hospital room and IV pole. Let’s just say Studio 54 had nothing on us. Complete with swirling mylar streamers her room was transformed into a thirty-day disco party. Julie brought Robin a perfectly fitted pink baseball cap that would come in handy once her hair was gone. Scarlett and Linda brought the two big panoramic posters of Maui and Greece. Those truly became posters of inspiration. Joey and Kim brought sugar-free gum and hard candy. Those were lifesavers once the mouth sores set in. Lois Ann and Cathy provided the Demi Moore GI Jane poster that we hung beside her bed for those “we need to kick booty” moments. That came right when we switched rooms. It almost felt like a new room, new poster, new attitude.

  Sally-Ann and Dorothy would bring all the gifts that came their way from home up to Robin. That was very sweet. To have a taste of the South, something familiar.

  We knew that after the transplant, I was going to have to be in isolation for an undetermined amount of time, so my friends wanted me to find the four walls that confined me to be inspiring. They placed two blankets given to me by GMA viewers on my bed to comfort me. One was a New Orleans Saints blanket. The other was handmade with my name embroidered on it with hearts. In the hearts were inspirational words such as courage, strength, faith. My friends even decorated my IV pole with disco balls. After lots of harebrained suggestions, we christened the pole with the name Roshanda, the disco name for Robin.

  Amber was building her massage therapy business and clientele when I was diagnosed with MDS. She didn’t hesitate to put everything on hold. We realized how fortunate we were, because many people in similar situations do not have that option. Amber knew I needed around-the-clock care, especially when I was released from the hospital. I know my sisters took great comfort in knowing that I wasn’t alone. Amber and I have been a loving couple for almost ten years now, but we choose not to live together. Maybe that’s why we’ve lasted almost a decade! Shortly before my MDS diagnosis, Amber had moved into a new apartment closer to mine. Taking care of me meant she didn’t even have time to fully unpack all her boxes. She remembers how hard her friends worked to clear the decks so she could be there for me:

  Since I was her primary caregiver, I needed to have friends take care of my beloved dog, Frances. This was extremely helpful. I could not be around Frances, because I was in such close contact with Robin. So having my two friends Stephen and Crystal look after her meant the world to me. Crystal had Frances for a month during transplant until she had to travel. Then Stephen took her for another two months after we left the hospital. AMAZING FRIENDS!!!!!

  Amber was at the hospital every day, and she never failed to make me laugh with her bright, sunny spirit. My dear sisters sung hymns, and we reminisced about all the adventures we’d shared. But there is one moment that I shared with my friend Scarlett that was so essential to my journey.

  Scarlett and I met through mutual friends in the 1980s. She lives in Phoenix now, and Apple Springs, Texas, is her hometown. She loves country music and burns CDs for me. Scarlett keeps me up on all the latest country hits.

  Visiting hours were over for the day, and Amber left the room with our friend Linda. Scarlett stayed behind and sat by me on the bed. I remember whispering to her, “Scarlett, am I going to die?”

  She was the one friend that I could share that moment with. Amber and my sisters were a constant presence. I didn’t want to overwhelm them with the fear that the question posed. But Scarlett was leaving town and moreover, she is my deep friend.

  She’s only five feet five inches tall and looks like you could knock her over with a feather, but there is no such thing as the weight of the world when Scarlett is around. She is an old soul, and I’ve never seen a problem too big for her to handle. This time was no different.

  So I asked my dear friend, “Am I going to die?” And she sat on the edge of the bed, stroking my head. I think she murmured something like, “Oh, sweetie, why would you even think that?” But it wasn’t what she said, it was the way she held her space. She really reasoned with me and reassured me. She didn’t become overly emotional and she didn’t start crying—I knew she wouldn’t. I don’t know how she was when she left the room but I knew that in front of me, she lent me the strength that I didn’t have at that time. I’ve often said when fear knocks, let faith answer the door. Sometimes when fear knocks, faith shows itself through a friend who stands by the door, squeezes your hand and answers it with you.

  Chapter 20

  The Rabbit

  The picture of GI Jane that my friends hung in the room proved to be especially fitting, because those ten days of chemo were my own personal Hell Week. The chemo breaks you down before the transplant can build you back up with new life.

  Nausea, vomiting and diarrhea are common during the preparative treatment. My doctors did a great job controlling those side effects with medication. But the anti-emetics, the drugs that prevent vomiting, can have harsh side effects including muscle tightness, uncontrolled eye movement, constipation and shakiness. These are more unnerving than dangerous.

  High-dose chemotherapy goes after cancer cells, which are rapidly dividing. But it turns out that the cells that line your mouth, your throat, your gut, your hair and your skin are rapid dividers, too. So these are typically temporarily damaged by the preparatory regimen. Countless times a day, a nurse came in to make sure I brushed my teeth and gums with a soft sponge and then I rinsed with a saline solution to help prevent mouth infections.

  I can’t tell you how glad I was that Amber and I had that party. It carried me through some of my most challenging days. There were moments when I would just chuckle and the nurses w
ould say, “You’re thinking about that party.” And I was. It was like, “Wow, you should have seen Josh.”

  The ten days of high-dose chemo before the transplant were its own kind of marathon. There were two goals of the conditioning regimen. The first was to destroy the diseased cells; the second was to suppress my immune system so that Sally-Ann’s blood stem cells could engraft, or attach, to my own and start producing healthy blood cells.

  The first day of my conditioning regimen, my thoughts were with Mom. She always said she never got much rest in the hospital. So true. Someone was in my room every couple of hours, poking me or taking my vitals. My blood pressure was low, so they had me on increased fluids. Chemo started at 6 a.m. It’s a good thing I’m a morning person.

  I got up at my usual 4 a.m. and e-mailed my friends, “You should see the contraption they have me hooked up to. Now the fun really begins. Bring it on!”

  In the conditioning regimen, they count down the days like NASA engineers preparing a rocket ship for launch. Today isn’t day two of high dose chemo, it’s day –8. Meaning 8 more days of chemo then transplant time. I was now receiving chemo every six hours—6 a.m., noon, 6 p.m., midnight.

  Day –8, also known as September 12, 2012, was a beautiful fall day. I remember sitting in my room and looking out onto the city. New York is a riot of color in the fall.

  Life changes so fast.

  Just a few weeks before, 6 a.m. would find me on the set of the show, joking around with Sam and Josh, interviewing guests.

  Just a short time ago, I had been in Italy, waking up in a beautiful old villa, enjoying a glass of red wine under the Tuscan sun.

  When I woke up the next day, God sent me a present. One Julie Elizabeth Lennon. We both hail from the great state of Mississippi. Can’t remember a time when Julie has not been in my life. She’s a lawyer and lives in Dallas now. When you’re about to undergo such a delicate procedure and you have to put your affairs in order, I can’t tell you what a comfort it is to have a best friend as your lawyer. Her visits really lifted my spirits. She showed me old vacation photos of us in Bermuda. There was one pic of me in a white sports bra and canary-yellow shorts. What can I say? Left on my own, I’ve never really been a fashionista.

  Day –7 brought a restless, sleepless night. The constant chemo was no joke. Thank God that Day –6 brought the end of the busulfan treatment, the chemo that had to be administered every six hours. But I started two new chemotherapies. I remember melphalan, because while taking it I had to eat ice almost nonstop. You tolerate the drug better if your mouth stays very cold throughout the treatment. I e-mailed my friends, “Ice, ice baby. Sing it with me…Ice, ice baby.”

  I began calling transplant day “Go Sally, Go” Day.

  Day –5 was hard. No dancing. No visitors. No food. I tried so hard not to be a Debbie Downer, but I also want to keep it real. Five days of chemo were beginning to catch up with me.

  I knew that part of my chemo blues was from my mourning for my mother. It had not even been two weeks since her funeral. Reading e-mails and seeing photos that my friends sent helped to lift my spirits and gave me the strength to tell Debbie Downer to take a hike. I knew that I needed to be both mentally and physically prepared, because the last chemo before my transplant would be the toughest of them all.

  The next day, I began forty-eight hours of a two-day chemo treatment called the Rabbit. The doctors explained that there was a high chance of fever, chills, mouth sores, nausea, the works. The Rabbit is a chemo designed to wipe out anything the other chemos missed. Your skin literally jumps during the treatment. You feel the chemo racing around your body like a rabbit, digging up potholes, looking under anything where my damaged cells might be hiding. It was a rare moment when Amber and another loved one weren’t in my room. Amber had been constantly by my bedside, and I implored her to go home and get some rest. There alone, I became a little delirious. I was in so much pain. I was so scared. I felt myself slipping away. Then I heard someone calling my name over and over…Robin! Robin!

  I opened my eyes and saw Jenny, one of my compassionate nurses. She was sitting on my bed, shaking me. All I could see was her wide-opened eyes above her mask. To this day, I’m convinced it wasn’t Jenny’s voice, but rather my mom’s voice, not calling me to where she is now, but calling me back to my body, to that gloomy hospital room, telling me that I could do it, that I was meant to live and fight another day.

  Chapter 21

  Keep It Boring

  September 20 was Transplant Day. I had nothing left at that point. My body was as weak as I’d ever known it. But I was surrounded by loved ones to witness this miraculous moment. Amber, my sisters, Team Beauty, Sonny, Emily, Karen. Dorothy and Sally-Ann serenaded me with the words of Diana Ross’s classic love song “Ain’t No Mountain High Enough,” assuring me that “nothing can keep me, keep me from you.”

  The theme of the day was new beginnings and my loved ones set up a playlist to honor the moment. In addition to “Ain’t No Mountain High Enough,” we played: Stevie Wonder’s “Happy Birthday,” India Arie’s “A Beautiful Day,” Mandisa’s “Good Morning” and a favorite hymn, “Blessed Assurance.”

  Amber and my sisters decorated the room with balloons that symbolized that I was being literally reborn: HAPPY BIRTHDAY, HAPPY 1ST BIRTHDAY and ANGRY BIRDS. (I love to play Angry Birds.) They completed the décor with Roshanda-themed disco decorations: disco balls and sparkling streamers.

  When Dr. Giralt entered the room, it was as lively as the discos that had inspired my IV pole’s name. He smiled and said, “I can feel all the love in here.”

  Diane Sawyer and Sam Champion were also in the room. Sometimes people look at the photos and say, “You had colleagues there.” There were no colleagues in that room, okay? Anybody who was in that room, they were family and friends.

  One of my favorite pictures is of my mother and Sam. He was having a crazy week and he didn’t really have time for lunch. But he heard that Mother was in town, and he said, “I’ll make time.” After lunch, he came over to hug Momma and he said, “I needed that. Boy, did I need that.” Mom had such a way of making people feel that no matter what they were going through, all was right in the world. She believed today was a gift and tomorrow represented infinite possibilities. She never preached or pontificated, but she made her point and you’d walk away feeling good, more than anything. “Oh, mercy”: Momma liked to say that as she threw her arms around you. As miraculous a moment as it was, it was tough going through my transplant without my mother. Tough knowing that just days before, I’d held her hand as she took her last breath. Whether you’re two or fifty-two, when you are sick, you want your momma. I know I did.

  At the moment I was reborn, I thought about Dr. Giralt’s saying, “Keep It Boring”—and that’s exactly what we did:

  Pastor A. R. Bernard of Christian Cultural Center in Brooklyn blessed the syringe.

  Dr. Giralt inserted it into the port of my chest.

  Millions of Sally-Ann’s cells flooded my bloodstream.

  Go Sally, go!

  I didn’t hear anybody else. I didn’t see anybody else. I remember seeing tears in Dr. Giralt’s eyes, and I can see that his mouth is moving underneath his mask. He is praying, a prayer that his wife and mother-in-law taught him: Let God do His work and it will work.

  * * *

  When I was about four years old, my family went on a spiritual retreat to Lake George in upstate New York. Even though I was so little, I can remember the majesty of the lake and the Adirondack Mountains. During the day, my sisters, brother and I went to children’s workshops while our parents attended seminars. At night, we all gathered around a campfire. Momma sang in the retreat choir, and that summer she learned a new hymn: “How Great Thou Art.” That hymn became my dad’s favorite.

  On the morning we were due to head home, my parents couldn’t find me. The family searched for me frantically. Momma always said it seemed like an eternity before they found me, sitting at the
far end of the pier. I was sitting very close to the edge, swinging my legs back and forth like a pendulum clock. I had been told not to go to the lake without an adult, but I remember thinking I had to see it one more time before we left. My father remembered approaching me carefully, not wanting to scare me and cause me to fall into the cold, deep water. My family finally exhaled when I was safe in his arms and his embrace.

  Getting ready for my transplant, surviving some of the most excruciating pain I have ever known, I willed myself to remember that while my father is no longer with us, as they say in the South, every good-bye ain’t gone. When I need him most, I can feel his strength, his love, his protection. I try to remind myself that I may be sitting at the end of this long pier all by myself, but I haven’t fallen into the cold water. Everybody I know, everything I love, is just waiting for me to take a walk that at times I can only take alone.

  * * *

  After the transplant, the room I was in became an isolation zone. As a transplant patient, you learn more about germs than you ever, ever wanted to know. And this is the thing: Bacteria, viruses and fungi live in and around us on everything. It’s in the air we breathe and on the food we eat, on every hand we shake and the cheeks we kiss. The pre-transplant regimen not only destroyed the cancerous cells in my body, it also wrecked my immune system. So the first two to four weeks after the transplant were critical. My body needed time for Sally-Ann’s cells to engraft and for my own body to start refilling its store of white blood cells.

  From the Memorial Sloan-Kettering advisement on allogeneic transplant patients:

  You will be placed on protective isolation precautions to protect you from germs.…A card telling visitors about the type of isolation will be placed on the door to your room. The door to your room must remain closed. All staff and visitors who go into your room must wear a mask, wash their hands and put on gloves. The mask and gloves will be in a box near the sink.