Everybody's Got Something

  Anyone who’s been a caregiver to someone battling a life-threatening illness knows how frustrating it can be. On one hand, you feel like, “I don’t want to tell you what I need.” And at the very same time, you feel like, “If you loved me, you would know what I need.”

  Of course, the caregiver is caught in the middle because he or she thinks, quite logically, “If you don’t tell me, how will I know?”

  Amber had planned for some time on returning to Northern California for her high school reunion. Quite a few times she said, “If you don’t want me to go, I’ll stay here with you.” She had already sacrificed so much to be by my side nonstop, and I knew she was looking forward to seeing old friends and her family. I insisted that I’d be fine, and Bugs had agreed to come back to stay with me. Midway through Amber’s visit back home I had to be readmitted to the hospital. I was devastated and scared. Amber asked if she should come back.

  I said no. I admit I was being passive-aggressive with her. I wanted her to come back without me asking.

  Amber had a little bit of a different take on things:

  I was definitely in it for the long haul. I was there seven days a week, even when family and friends were there “to relieve me.” I just needed that sense of being next to her. When the opportunity came to go to my twenty-year high school reunion, I felt this was it…my break to be with family and friends. MY “south.” MY touch of home that would finally comfort me, only the way your parents and longtime friends know how to do. My plans were set months in advance, and it was THE one thing I was looking forward to that did not relate to anything transplant. Robin gave me her blessing to go. Funny…when I finally reached home, the topics of discussion were still transplant and, of course, Super Storm Sandy. Which had just hit that weekend before. Being away from Robin felt so far, talking about her made me feel so close.

  I arrived early in the week and get in contact with my best high school girlfriends, Berta and Tina. All my worries seemed to have slipped away. I was transported back to such a blissful time. The simple pleasures of just hanging out together and catching up seemed so perfect to me. We found out there was a prereunion gathering Friday night at our local pizza joint, Skipolini’s, followed by drinks at the bar next door. The reunion would follow that Saturday night. We rounded up a few more friends and voila! The weekend was coming together.

  I was out and about when I see a call from Robin come through on my cell phone. My heart raced with excitement. “She’s calling because she wants to hear the sound of my voice!” Not exactly. She was calling to tell me she was being admitted back into the hospital. I listened to her every word and waited until she was finished. I then asked, “Do you want me to come home?” She responded along the lines of “You do what you would like.” Well, shoot, that doesn’t help me one bit, does it? We hung up with each other, and then the panic set in.

  What to do? Looking back, my reaction should have been “Don’t worry, honey! I will be right there. I will switch flights and take the next possible one out.” But it wasn’t. It was more along the lines of “How can I make this all work out?” She was looking for my loving reaction, and I was looking for a direct response on what to do. Communication was clearly down.

  I decided to forgo my reunion on Saturday night and stay for the Friday-night pizza gathering. There were a handful of friends I was going to miss seeing that I was really looking forward to catching up with. Friday night was a blast, and I really felt great about my decision. I headed back to New York first thing in the morning and went straight to the hospital. From what I remember, Robin was not happy.

  I had Bugs with me, but I wanted and needed Amber.

  Again, I admit I was being passive-aggressive with her. I wanted her to come back without me asking. Bugs was a little out of her comfort zone now. She’s very nurturing, especially when it comes to cooking, but taking the lead in my medical care was an entirely different story. I was used to Amber paying close attention to what the doctors were saying and relaying the info to family and friends. Amber took meticulous notes, when she wasn’t playing Candy Crush on her iPad. I would hear her on the phone with my sisters using medical terms and breaking it down in easier ways to understand. I often thought: “How does she know all that?”

  After a couple of tense phone conversations, Amber cut her trip short by a day or two. I was relieved to see her when she walked into my hospital room. But a short time later she left to have lunch with friends in town. I was furious. When she returned, we went at it. We were screaming so loudly at each other that I thought we were both going to get thrown out of the hospital.

  In hindsight, both of us could see that as my lead caregiver, Amber wasn’t taking very good care of herself. It’s a mistake she now urges other caregivers not to make:

  I so badly needed a break. Maybe if I would have taken time off from caregiving when family and friends came in, my reaction and thought process would have been different. But here I was feeling I made the right decision, only to return to a very upset Robin.

  I never took time off. Maybe a morning or two where I would come in later than usual, but it was never really time off. My suggestion would be to do just that and take some time for yourself. I know for many patients you have to relocate to a hospital that is out of town. Research the local gyms, yoga studios, whatever it is that you do in your everyday routine, and see if there is one near you. Something to clear your head and recharge your body. Otherwise you will totally burn out or, in my case, make very poor decisions that feel right in the moment.

  She had been so selfless in caring for me for many months. Going to every doctor’s appointment, with me every day in the hospital, putting her life on hold. She said she needed to be around her friends, that she had a life, too. I regret that I told her: “Well, you don’t get to have a life right now!” I wouldn’t have blamed her if she had walked out and never had come back. I’ve heard plenty of stories from others that their spouses, partners or significant others did just that. In some ways it’s more difficult for the ones we love than for those of us going through a life-threatening illness. We are told to have one focus: Getting well. We are encouraged to be selfish, to put our needs first as we battle for our lives. Meanwhile our loved ones feel so helpless. I know how lucky I am to have Amber in my corner and in my life.

  I often think about my colleague Joel Siegel, who waged a valiant battle with colon cancer. He died right before I was diagnosed with breast cancer in 2007. Joel was our movie critic, and I remember being with him one year at the Oscars. Joel had an outburst or something, and it was very out of character. The Oscar people were upset and wanted to bar Joel from ever going there again.

  Months later Joel was in our studio doing a segment on holiday movies. I said something about how it was kind of a tradition for my family to go to the movies on Christmas Day. Joel made some crack, which I took as a snide remark. Something like, “Wow, that’s a fun family.” I remember I was so angry and Diane said, “Robin, you don’t understand, the medication that he is taking alters his behavior.” At the time I thought, “Well, okay.”

  I’m here to tell you that moments like that come back full circle sometimes. Because there were medications I’ve taken that have had a similar effect on me. One time I snapped at Amber about something and she just looked at me and said: “That’s not you, that’s the prednisone talking.” Bless her for knowing it was indeed the steroid that was affecting my behavior. There have been days when I’ve had to cut myself some slack, going, “Why am I acting this way?” Now I know some of the medication will affect your behavior, especially if you’re someone like me, who rarely took even an aspirin before.

  Amber was in the dark, like I was, about what a bone marrow transplant entails. She found a wonderful blog written by a man named Scott who was about six months ahead of me in the process. Scott is about the same age as I am. He didn’t have any underlying health conditions. And he has a zest for life. Amber checked out his blog more than I did. It
was as helpful to caregivers as it was for patients. When I had to go back into the hospital in April I remembered: “Oh, Scott, that’s right, he also went back to work and then had to go into the hospital.” I said, “Okay, all right. It does happen. It’s not anything that’s unusual. Oh, okay.” Again, once you know that someone else has walked that path before you, it makes it a little bit easier for you. Thank you, Scott.

  Chapter 25

  Setbacks and Comebacks

  There’s an old saying in sports: A setback is a setup for a comeback. In November 2012, I had my first setback. I developed what is called an opportunistic virus, cytomegalovirus, or CMV. The virus is common, especially in big cities like New York, where I live. It’s a latent virus that many of us have, but our immune systems take care of it before it becomes a problem. But when I contracted the virus, it was day fifty after my transplant, and I didn’t have an immune system to fight the virus off. I was admitted to the hospital and given intravenous drugs every twelve hours to knock the CMV out. The doctors estimated that it would take seven to ten days.

  At first it had been my goal to make it to the critical one-hundred-day mark without going back into the hospital, and I was disappointed to be readmitted. But as I always say, you have to change the way you think in order to change the way you feel. So I decided to see it as just coming back in for a tune-up. With Amber at her high school reunion in California, it was great that Bugs was back with me. My doctor even allowed her to bring food from home for me, since it was thanks to her good cooking that I’d finally started to get some much-needed meat on my bones. They didn’t want me to lose that momentum. So Bugs and her cooking to the rescue once again!

  I was so thankful that my big sister came up to see me when I was back in the hospital. I remember she was in the hallway getting prepped, going through the whole sterilization routine, and she had this big smile on her face. I just leaned out to look and I thought, “Sister Sally is coming to see me.”

  Sally-Ann remembers that she felt bad for Butch because he wanted to be there. We communicated a lot, especially on my private blog, but he just couldn’t come to New York at the time. He was working for a new school district outside of Houston, and he couldn’t get the time off. That’s what I appreciate about my siblings. I don’t live in the real world, they do. They keep me grounded.

  It was unusual that Dorothy and Sally-Ann were able to be there as much as they were, because if you spend even five minutes in the transplant world, you hear the horror stories. People lose their jobs while they are fighting for their lives. Families fall apart under the stress and pressure of the costs and the caregiving. But we didn’t have that—and thank God, because I really needed them.

  Sally-Ann came up in November for my birthday. She didn’t come because I had CMV; the trip had been planned already. And she asked me if she could do a taped interview with me for her TV station. It was sweet how folks in New Orleans were so concerned about me and Sally-Ann. We had the interview all arranged, and then I became ill.

  I didn’t know I was going to be in the hospital, but luckily I was getting better and I was going to get out soon, so I said, “Okay, let’s do the interview.”

  Sally-Ann’s camera crew came in and we all said hello. It was comforting that they were local guys. I had worked with the lead photographer, Michael Rose, for years. I was far from camera ready. In fact, I was huddled in one corner of my room, holding on to an IV pole, getting a platelet transfusion as the camera was being set up. But I thought, “I promised Sally-Ann an interview, and I’m going to keep that promise.”

  I asked the nurse if we could take a break in the treatment. She agreed and we began. It was all going fine, the standard stuff about my transplant and my sister being my donor, when Sally-Ann hits me with this: “Robin, I have a birthday gift for you from our mother.”

  I said, “Excuse me?”

  Sally-Ann smiled her big, sunshiny smile and takes out this beautiful cross. She says, “It’s from Mother.”

  I said, “Our dead mother?”

  And it was one of those moments when you have to laugh because I’d just had a platelet transfusion, I’m recovering from this awful virus, and my dear sister, my donor, my match, hits me with a “from the grave” birthday gift.

  The camera was rolling and I was smiling, but what I was thinking, “Oh, Sally-Ann, I’m going to pop you.”

  I opened it and it was this beautiful cross, and I said, “Well, thank you.” And I really meant it.

  * * *

  Still, you better believe that I teased Sally-Ann for months about that interview: Oh no she didn’t! She didn’t pull out the dead momma birthday gift! But she did, and what I love about my sister is that even when the chips were down—“CMV infection messing with my platelets” down—something zany like that interview can happen and we can laugh about it. Reminds me of the picture frame on my coffee table that says: “Family, we may not have it all together. But together, we have it all.”

  Chapter 26

  100 Days

  After my transplant, all I wanted to do was get to one hundred days. It’s a term you hear again and again in the transplant world: A hundred days. A hundred days. A hundred days. You get to the hundred-day point and your chances of survival increase dramatically.

  I thought of my father often during the one hundred days when I lived in my apartment in near isolation. My apartment overlooks the Hudson River, and to the west of that is New Jersey, where my father was born and raised.

  Trained in Tuskegee, Alabama, where I was born, the Tuskegee Airmen were America’s first black military airmen. Their success rate during World War II was unmatched by any other fighter group. The brave pilots completed 1,578 missions, including escorting bombers, and they never lost one to enemy fighters.

  I’ve always loved that my father was in the Air Force. I thoroughly enjoyed being a military brat. I have an old family picture that’s my favorite. I’m about five, and my dad is in uniform. My dad was a quiet man, but he lit up when he talked about flying. “It’s complete freedom,” he used to say. “I guess it’s what birds must feel. You go up, down, left, right, wherever your heart leads you.”

  I had a lot of time to sit at the window during my one hundred days, time to look at the birds and to sit with my wonderful memories of my father. My dad always used to say, “Daughter, recharge that battery. Recharge that battery, daughter.” For one hundred days, that was exactly what I did. During my recovery I had a chance to rediscover who I am and also imagine who I could become.

  I had an ambitious reading list for my one hundred days. Mellody Hobson and her now husband, George Lucas, sent me an amazing stack of classic films. I didn’t anticipate that this forced isolation was not going to be a trip to the spa. I didn’t read dozens of books or learn a foreign language. I didn’t have the strength or the energy. One book that I did pick up again and again was one of my mother’s favorites, Streams in the Desert, a book of Biblical devotions first published in 1925, a year after my mother was born. Something I read in Streams stayed with me during the toughest moments of my post-transplant recovery: “I walked a mile with Pleasure, she chattered all the way. But left me none the wiser, for all she had to say. I walked a mile with Sorrow and ne’er a word said she. But oh, the things I learned from her when sorrow walked with me.”

  I missed KJ and our walks by the river. That was always my time to slow down and not think about my game plan for a moment. It was always a welcome respite. During my recovery, I fell back on an old family tradition: quiet time. Taking a few moments each day to be still, reading Streams in the Desert, meditating. Day after day, I recited the Prayer for Protection silently to myself: “The light of God surrounds me, the love of God enfolds me, the power of God protects me, the presence of God watches over me.…Wherever I am, God is.”

  I spent a lot of my one hundred days missing my mother. Even though she was on her aging journey when I was going through breast cancer, she was a great c
omfort. She would visit me often and even stayed at a nearby assisted-living facility the summer after I completed my chemo to be near me. She would often say, “I just want to lay my eyes on my baby.”

  When Mom wasn’t here, she was always a phone call away. We talked on the phone every day. Her sweet voice was the best medicine. She would read her favorite passages from Streams in the Desert or sing to me if I had had a particularly difficult chemo treatment:

  By and by, when the morning comes,

  When the saints of God are gathered home,

  We’ll tell the story of how we’ve overcome,

  For we’ll understand it better, by and by.

  It was so difficult to go through my transplant journey without her. I had never gone through any challenge in my life without her. Breakups, career woes, stubbed toes—Mom was always there to pick up the pieces, always there to let me know that I would understand it better, by and by.

  As much as I wanted to, I didn’t watch GMA every day when I was away. It was hard to watch the show and not be on. I’d fought so hard for us to be number one. I was wracked with guilt when I became ill again. We had all worked so hard, and now I was sidelined indefinitely. James Goldston, an ABC News executive, took me out to breakfast shortly before my medical leave. He assured me, like others had, that my return to good health was the number one priority. But he also said something that stayed with me. He said when I left it would be important to signal to the audience and to my fellow anchors to carry on with my blessing. He said something to the effect of: “Give them permission to have fun.” During my absence there was an article written that stated Matt Lauer and others felt that when I was away the Today show would return to number one. Never happened. The most precious gift our beloved audience gave me was that they continued to watch GMA. They continued to make us number one.