Everybody's Got Something

  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:

  Perhaps the difference between emotional and physical caregiving is this. When you are there physically, you cannot get emotional. You have to stay strong and present for whomever you are caring for. They look up to you as the one positive. If you let your emotions get in the way of the task at hand, it can go very badly. I never wanted Robin to see myself scared.

  I had to keep family, friends and colleagues tuned in and up-to-date without scaring the daylights out of them. I put people into categories depending on how much detail I felt they should know. I never wanted to scare ANYONE.

  With that being said, I did have an absolute meltdown in the elevator and a nurse just happened to hop in with me at the last moment. ALL of my bottled-up emotions finally came to a head and there we were. I was a crying mess while she held me and assured me everything was going to be all right. She said, “This is scary stuff, I’m not going to lie, but everything WILL be okay.” She was a little angel sent in to comfort me. I then left the hospital and just started walking. I walked and walked crying and sobbing on the phone with my best girlfriend, Crystal. She was MY point person. The one person I knew I could tell ANYTHING to without freaking her out. It’s important to have that go-to person for the caregiver that will listen to you while you just ramble and let everything out. She always knew exactly what to say to make me feel better :). Sometimes saying nothing was just as perfect.

  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:

  You will be weighed each day around 6 a.m. Most weight changes during transplant hospitalization are due to fluid retention or loss. The inpatient team needs this information by the time they make the rounds to make important decisions. Your blood pressure, temperature, pulse, respirations, and blood oxygen level will be checked every four hours around-the-clock. No one likes being awakened at night, but these measurements are important. Any change may require a treatment change.

  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:

  Exercise and activity: Once isolation begins, you may not leave your room unless you are going for treatment. However, activity is very important. Get out of bed at least twice a day and try to walk in your room every day to maintain your muscle tone and strength. Sit up in a chair as often as possible. You can also ask for a restorator bike that has pedals that can connect to a chair. It can help you keep active.

  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.

  I sucked ice to keep my mouth from going completely dry, but even that provoked a reaction. I remember once putting an ice cube in my mouth and thinking, “Oh, sweet relief.” But it tasted so bad that I spit it right back out. Something was wrong. I thought it was covered in some kind of mold.

  I said, “Who put fur on the ice?”

  Everyone in the room looked so scared.

  Amber very lovingly and patiently said, “Robin, there’s no fur on it.” But I was so sure that I had felt fur, and the frustration of not being able to enjoy even a simple ice cube was heartbreaking.

  Some of the most frightening moments after my transplant were ones that I don’t even remember. I think the brain has an incredible way of protecting us when our bodies need to heal. Amber has been my gatekeeper and my caregiver, but she also has held, with love and trust, some of the most painful memories of my journey:

  There came a point during Robin’s treatment when I was not allowing any visitors. I became the gatekeeper and the gate was CLOSED. During this week Robin began taking anti-fungal meds along with her pain meds, resulting in a very hallucinogenic state of mind. Thank goodness this week fell when Dorothy and Sally-Ann were not visiting. I would have hated for them to see their baby sis in this state. I bring this up because it can be very difficult to witness your loved one like thi
s. Eyes barely open, head tilted back as if she was trying to get a better focus and all motor skills completely out the door.

  Robin didn’t know this at the time, but while I was “sleeping” on the sofa, I was actually watching her attempt to write and send out an e-mail. Dropping the BlackBerry several times followed by a slow-motioned glance over my way to see if I saw her. Of course I let on like I was sleeping. This went on for hours. It just broke my heart. She was trying so hard.

  I remember saying to myself: “This is just a phase and it will pass.” “Take a few deep breaths.” “She WILL come out of this.” And she did. But not until after having her room literally come to life, complete with a dancing elephant swirling in circles on her shelf and her giant flower mylar balloon that stayed attached to the ceiling spinning like a pinwheel above her. She had herself one trippy evening.

  Lois Ann and Cathy were due to come in for the weekend and I worried about Robin’s heavily medicated state. I warned the girls that she was quite out of it and not herself. I wanted to prepare them for the absolute worst while I hoped for the best. After we washed up and put on our gloves and masks, I did my “coded knock” and slowly opened the door. To my absolute surprise and in complete Robin fashion, our girl had rallied. She was wide-eyed and bushy-tailed and so excited to see us all. As if she hadn’t seen me for a week. That’s when she began to tell us of her party that she had in her room the night before. During that time I believe a nurse had walked in to take her vitals and found Robin at the edge of her bed conducting an interview. If only I had witnessed that!

  From that point on Robin was making tremendous strides. That unrecognizable person was definitely in the past and Robin began putting the pieces of her old self back together. We hung the GI Jane poster on the wall of her new room that weekend. From that point on there was no looking back.

  But the good news was that despite the pain and the discomfort, Sally-Ann’s cells and my body were getting along. I kept asking when would I feel better. My doctors told me I would know before they did. That I would wake up and know something was different. It took several days after the transplant but it happened. One day my white blood cell count was 2.2 when it had been just 0.4 the day before. Both Dr. Giralt and Dr. Roboz were very excited, because they took it as a sign that my body was busy producing healthy cells. They also cautioned that my numbers could fluctuate. We needed consecutive days of numbers moving in the right direction. But we were off to a very promising start.

  That day, I was also moved to a new room. That often happens during long hospital stays. Patients are discharged and better rooms become available. The new room was a corner with windows on both sides. So much more light came flooding in. It was perfect for this phase of my recovery. Funny how when you get sick, the things you might take for granted when you’re healthy feel like an enormous gift from God. The sunlight did more than warm my body, it warmed my soul.

  Chapter 22

  Fourteen Laps a Day

  When the journey is a long one you look for milestones along the way. Being cleared from isolation was a huge one. When my numbers cooperated I was determined to get out of that bed. I would take my robe and I’d walk the hall. Fourteen laps around the floor and nurses’ station equaled a mile, and I’m very competitive; I set a goal of doing fourteen laps every day that I was able. Of course, the first day, I set out to walk the whole mile, but was totally exhausted after two laps. My friends Lois Ann and Cathy helped get me back to my room.

  Lois Ann and Cathy were visiting from Northern California. Lois Ann is Southern, originally from my birth state, Alabama. Lois Ann is my take-charge friend, like “Okay, what are we going to do?” She was a great friend to have come visit as I began to try to walk around and build my strength, because I tell you, you’ve got a task? Lois Ann Porter is the one to help you get it done—and with such sweetness. It’s really an art the way she manages to be so in charge and so tender at the same time. Plus, Lois Ann has the biggest belly laugh, this guffaw that I loooove.

  After weeks in the hospital, even with everything going as well as could be expected, you’re bound to get the blues. You just can’t stare at four hospital walls for twenty-four hours a day and not feel the severity of your situation weigh in on you, just a little bit. Later, I also learned how much also weighed on my friends. Jo and Kim told me they vowed not to cry in front of me, but they often did when they left my room. I was moved when Kim told me: “Robin, I was terrified and had no idea what to expect. Your strength gave me strength.”

  I was buoyed every day by the prayers and messages of our viewers, friends of friends and people I know I’ll never have the privilege to meet. If you’ve ever thought, “Should I send a card? Does it matter?” I want you to know that the answer is “Yes!” The notes and messages we received not only lifted my spirits, they brought joy and hope to my family and my friends. Amber saw it firsthand:

  Emotional caregiving is just as important. These are the people that can’t make it to your hospital room but are there on the sidelines cheering you on. They send cards, gifts, e-mails, texts, you name it. They are the uplifters from beyond the outside world. Robin had MANY emotional caregivers. Reading through all the cards gave me something to do while on the rare occasions Robin was napping. As much as the cards were meant for her, they filled me with an incredible sense of comfort. Just like the nurse had told me, everything was going to be okay.

  For the most part, everyone was pretty respectful of Robin, myself and the family. I think if you send a card, a gift, leave a voice mail or send an e-mail or text…do it without expectations. We had every intention to respond, and we did to most. But at times a simple thank-you seems like THE biggest task at hand when your loved one is hooked up to fifteen bags of meds and doing their best to stay alive.

  For security purposes the hospital had this gentleman, Gregory, who would be out near my door and it was always nice because we’d talk about sports, we’d talk about the upcoming election, it was like my connection to the outside world, other than my friends. I would look forward to seeing him when I was able to leave the room. We usually took our walk very early before the hall became busy with activity. “Roshanda,” my trusty mobile IV pole, was with me. Pushing it along helped me keep my balance. As I passed the nurses’ station I would get big thumbs-up. The nurses were so encouraging.

  One morning, while walking with Gregory, I saw this gentleman who had his IV pole, but he had on jeans and a shirt and loafers. I was wearing my slippers and robe. And I kinda looked at him and he said, “You can wear clothes if you want to.”

  What a surprise. I said, “I can get dressed? I didn’t even know.” So I asked Amber to bring me some clothes from home. And it was amazing how much better I felt. Put on my jeans, a T-shirt, my tennis shoes and do my fourteen laps. But I would have never known if I hadn’t seen another patient wearing street clothes in the hospital.

  But don’t let the laps fool you. There were days when I couldn’t do fourteen laps, much less one lap. There were days when it would take all the energy I had just to swing my legs to the side of the bed and sit up straight. There were moments when the bathroom, which was merely ten feet away from my bed, seemed miles away, and as I felt the bone-weariness of Sally-Ann’s cells trying to pump me back to life, I would wonder, “How bad do I need to go to the bathroom?”

  Although it was my nature to talk to people and make friends, Dr. Roboz warned me that you have to have a little bit of tunnel vision as a patient. She urged me to “Focus on you, your disease, your experience, and be very careful even in walking around up on the unit. You’ve got to be careful. You want to make friends all the time, you want to hear their story, you want to be empathetic, you want to be sympathetic—but it’s their story, it’s not your story. And you can’t assume that because the disease sounds the same or has the same letters, that it’s behaving the same way for somebody else as it is for you.”

  Dorothy, Sally-Ann and Amber were the constants. Frien
ds flew in from all over the country. My childhood pastor, Reverend Jemerson, and his wife, Jacqueline, came from San Antonio. It was comforting to see them both. They told me stories about my parents that I had never heard before. I did recall the time we were running late for church and our usual seats were taken. When Reverend Jemerson stepped to the pulpit and saw us on a different side of the church he stopped his sermon. He drew strength from seeing our family in a particular pew every Sunday directly in his line of sight. He politely asked if folks could squeeze in so “the Roberts family could sit in their proper place in the house of the Lord.”

  I was always happy to see my friends from ABC. Tory Johnson always came bearing wonderful gifts from her “Deals and Steals” segments on GMA. I was especially grateful to receive a comfy jacket that had zippers in the long sleeves and zippers just below the shoulders of the jacket. It was perfect for my PICC line. In fact, the woman who designed the jackets, called RonWear, came up with the idea because of her brother. In 2004, Deb Papes-Stanzak was caring for four family members who were receiving various kinds of infusion and dialysis treatments. Her brother, Ron, told Deb that he was tired of how cold he got during dialysis because of the short-sleeved shirts he wore to accommodate his port. Deb is a seamstress who has worked in the fashion industry. She sewed a zippered fleece jacket for her beloved brother, and RonWear was born. Let me tell you, it is the perfect gift.

  My friends, ABC colleague Deborah Roberts, who is married to Al Roker, and Gayle King, who is an anchor for CBS This Morning (and yes, she’s Oprah’s BFF), happened to visit when my sisters were with me. Gayle is such a girly girl. Her fabulous high-heel shoes always make me smile. Dorothy had to ask: “How do you walk in those things?” Both Deb and Gayle traveled all the way to Mississippi for Momma’s homegoing.