Everybody's Got Something (15 page)

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:

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.

T
he 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 would 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.

S
eptember 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:

The thing I remember most about the weeks after the transplant was that everyone who came in to see me was wearing a mask. I didn’t have to wear one, but they did. Day after day, week after week, all I saw of the people that I loved was the little rectangle of their face—eyes and forehead—that the mask did not cover. Everyone who touched me was wearing gloves, and I grew to miss that, too, the feel of holding Amber’s hand, the touch of my sisters’ and friends’ lips on my cheeks. Sometimes when I knew that they were on the way, I would stand at the door and peek out of the window of my room, to watch Amber, my sisters and my friends before they got scrubbed clean, before they donned their masks and gloves. It was a little treat in a long day to catch a glimpse of them this way—faces uncovered, eyes, noses, lips, cheeks—unmasked and unhidden.

What I didn’t know was what an effort it took for Amber and my loved ones to hide their emotions: their fear, their grief, their exhaustion—so that when they came to see me, their own very real pain wasn’t an additional burden I had to bear. Amber remembers:

The big fear was graft-versus-host disease. If my body (the host) began to reject Sally-Ann’s cells (the graft) then the transplant was unsuccessful. The chart that doctor had shown me, the one that put my life expectancy at under two years, would all of a sudden be relevant again. But there were other concerns. The transplant and the high-chemo prep before it could temporarily damage my liver, lungs and heart. Heartbeat irregularities and rapid heartbeat are scary and common side effects. Other post-transplant problems include muscle spasms, confusion and cataracts.

Numbness and tingling in the hands and feet, due to nerve damage in the preparative regimen, was also a big concern. Fortunately, the numbness for me was temporary. Unlike the other symptoms, this damage can be permanent, and it scared the living daylights out of me.

Dr. Giralt was especially concerned about the cosmetic effects of certain infections. He kept saying, “With most patients, the goal is just to get them better. But I’ve got to get you better and back on TV.” Believe me, in the days after the transplant, getting back on TV was the furthest thing from my mind. I just wanted to be healthy again.

After Katrina, my mother had urged me to celebrate all that we had gained in the months after the storm. She said, “It’s been a time of reawakening to not only what we had that’s gone, but what we can rebuild and do.” In the hospital room, my one and only goal was to build a path forward, one that would allow me to come out stronger and more alive than before.

You learn so much when you have an extended stay in the hospital. You’re so lonely and yet you’re never really alone. Every two hours there’s somebody coming and checking your vitals, or administering medicine, or doing this or doing that. I had thought—crazily—that an extended stay in the hospital would mean a great deal of rest. It did not.

From the patient advisement:

Post-transplant, my body and mind were so pulverized, I didn’t even know how sick I was. Especially during the first few days after the procedure, when I was on dozens of medications and my blood cells were being rebuilt from scratch, I experienced moments of forgetfulness that frightened me. During those moments, I would try to think of Mom. My spells were not as dramatic as some patients experienced, but they were sad and confusing all the same.

One afternoon, a physical therapist came to my room and she said, “You like Motown.”

I said, “How do you know that?”

She said, “You told me that at our last session.”

I said, “Have we met before?”

She looked concerned and said, “Yes, I’ve been here before.”

I said, “Wow. I don’t remember.”

But it was true. I love me some Motown, so we started doing yoga to some great old tunes.

From the patient advisement:

Eating was excruciating. I wouldn’t wish that pain on my worst enemy. That was tough. I always fluctuated between 150 and 155 pounds, and I got down to under 120. Which was a little scary: thirty to thirty-five pounds just
gone
in a matter of weeks. But I know for some people, it’s far worse. After a transplant, your throat feels as if you swallowed a blowtorch. Mine was so raw and so sore and so painful. And if you can’t swallow, they’ve got to feed you. I would just cringe every time a nurse hung a bag of lipids on my IV pole. It looked like white out and it smelled so pungent, rancid and horrid, like something someone had thrown up.