Read Everybody's Got Something Online
Authors: Robin Roberts,Veronica Chambers
Everybody's Got Something (16 page)
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 this. 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.
W
hen 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. Friends 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.
My sweet Diane came in her sweats, wearing her glasses. She gave me a toy lightsaber like the one from
Star Wars
. May the Force be with me.
The hardworking nurses were especially excited when Rich Besser, Sam Champion and Josh Elliott came to visit me. The nurses always seemed to wear a little more makeup on those days. Rich is about six feet five inches tall, so handsome and charismatic. What makes Sam and Josh so adorable is that they don’t realize how adorable they are. They knew they couldn’t bring me flowers, so they stopped by the hospital gift shop and brought me a big balloon shaped like a sunflower. They also got me these cute froggy slippers. When they showed a picture on the show of me wearing them, the slippers completely sold out. Oprah even got a pair.
* * *
I’ve had such an interesting career and I am so, so grateful for it. One thing morning television allows you to do is sit and talk to people from all walks of life. But you also get to go out and try things. A few years before my mother passed away, I did a segment on
GMA
called “In Their Shoes,” in which I was aged by a group of Hollywood special effects artists from the age of forty-five to the age of eighty-five.
Tony Gardner does amazing movie transformations. He got his start working on Michael Jackson’s “Thriller” video. The first step on my path took more than two hours as he covered me with a medical, flexible silicone to take molds of my face. Weeks later, they returned with more than ten prosthetics. Assembling more than a dozen pieces one step at a time. Assembling new cheeks, ears, using seven different colors to create skin tones and wrinkles. I watched myself slowly vanish and I began to see the outlines of my grandmother in the mirror. I was starting to look like Grandma Sally.
But it didn’t end with the makeup. Boeing had developed something called the “Third Age” suit. It allows you to simulate arthritic pain in your joints. With some 77 million baby boomers turning sixty, Boeing is using the suit to redesign planes for an aging population. Even getting dressed with the suit on wore me out. Suddenly, all of my joints ached. I couldn’t stand up straight. The smallest movements were a struggle. They smeared Vaseline on my glasses to mirror the effects of cataracts, and I went about my day trying to complete simple tasks like crossing the street and shopping for groceries. All of it was hard, hard, hard in the body of an eighty-five-year-old.
I remember looking at myself in the mirror during that segment and thinking, “The tall, confident athlete of my youth is gone.”
In the hospital, it was as if the transplant had done the work of a talented team of movie makeup artists. When I looked in the mirror, I saw a shadow of myself, aged and worn in ways that I didn’t recognize.
Now, when I look back at photos of me in my stark hospital room, I feel so much tenderness for the patient who looks like me, but isn’t the me I’ve known my whole life. I have lived my entire life in motion. Activity and athletics defined who I am, and I always welcome physical challenges. For as long as I can remember I’ve been fascinated with how fast I can run and how far I can throw a ball. I took great pride in earning a college basketball scholarship. I’ve run mini-marathons, taken part in triathlons. On
GMA
you’ve seen me climb into the pace car at the Indy 500. Shoot hoops with Shaquille O’Neal and play golf with Tiger Woods.
I had the same feeling each morning on the transplant ward as I had when I had done the segment on aging: Had I lost the most vital, recognizable part of myself? Was the tall, confident athlete of my youth gone? Just disappeared? As I ticked off each day in the hospital room, closed my nose to the smell of lipids and struggled to remember the names and faces of the physicians, therapists and nurses who came to care for me, I prayed that this altered state was just a temporary resting place: a necessary corridor on my way to a cure.