Everybody's Got Something (17 page)

W
hen I was born, Dorothy was four and Sally-Ann was eight. As they tell it, it was as if my mother had brought home a living doll from the hospital. Sally-Ann recalls being amazed by my curly hair and Dorothy remembered that once she tried to bounce me on the bed to see if I was as springy as a ball and she almost dropped me. They got the message pretty quickly from Mom and Dad, “Robin is not a toy.”

And yet, here I was, decades later, feeling very much like a baby again. When I finally was able to return to my apartment, a month after checking into the hospital for my transplant, Amber and my friends had decorated my apartment with a big pink baby balloon that read
IT’S A GIRL
. Dorothy was overcome with emotion, thinking about how she had also been there when I was brought home as a newborn fifty years ago.

It was a day of such mixed emotions. Because as happy as I was to be going home, I was petrified to be leaving the hospital and the watchful care of the transplant team. Such conflicting feelings: Yay I’m going home/Oh, my gosh, I’m going home?!

I had never taken for granted how many people watched out for me when I was hospitalized. I could push a button and someone came. If I got a fever, they knew what to do. But to be responsible for myself, to have to depend on Amber and whoever else was with me at the time, that was a whole different story. When my head nurse, Dena, came in to discuss the medications I’d have to take at home, she didn’t have one sheet. She had
several
sheets. In the hospital, I knew I was on a lot of medication, but two pills in a cup here, a pill in a cup there. I was never actually counting. Seeing all of those pill bottles lined up on my dresser, I felt like I was watching someone else’s life. This was my new normal. Again, shades of Mom.

I actually had a panic attack as I was leaving the hospital. I waited just inside the main door of the hospital as the car was loaded with my bags. Standing there I saw people walking by, coughing. The wind was blowing pieces of trash in the air. I didn’t want to go outside. I didn’t want to leave the controlled environment that had been my home for thirty days. I said a small prayer, and wearing a mask and gloves I was escorted by a hospital staffer, Tonya, out the door.

After thirty days of isolation, I took my first breath of fresh air. It just washed over me. It was so overwhelming to just see the sky. I paused for a moment to let it sink in. With grateful tears in my eyes I looked skyward. I swear I could see my heavenly ancestors cheering me on.

It never felt so great to be home as it did that day. I immediately went into my living room, where large windows frame the Hudson River. I extended my arms high in the air, threw my bald head back and began pumping my fists. I kept saying: “Yes, yes, yes!”

I knew that some never make it home after transplant. Another reminder of how very blessed I am. I curled up on my couch, wrapped myself in a brown, fluffy throw and stared out the window at the water for hours.

From the transplant patient advisement:

Even though I was being allowed to go home, I was still in a kind of quarantine. I would go back to the hospital three or four times a week to have my blood checked. My journey was far from over. In transplant terms, I was twenty-one days old. I’m sure some of you remember what it was like to bring your baby home for the first time. Your precious bundle didn’t leave the house much, and you were careful that anyone who came into contact with your child was healthy. The biggest concerns for me were infection and dehydration. I discovered that drinking Penta Water helped tremendously. It’s chock-full of important electrolytes. My skin was also extremely dry and scaly from the transplant. Soaking in a warm tub with lavender Epsom salts was quite soothing. My doctor told me my full-time job was to eat, drink, move and stay away from germs. And it did feel like a full-time job. I had energy for little else.

When I first got home from the hospital, I could hardly be by myself, because my balance was way off and I was falling—a lot. I remember once when Sally-Ann came to stay with me to give Amber a break, she stepped out to see my neighbor and her dear friend Susan Taylor. Susan lives just one building over from me. Sally-Ann didn’t realize that her phone was off and I kept calling her to come back. Somebody came to my door and I was almost like a little kid. I thought, “The last thing I want is to get an infection—should I answer the door?” It was someone wanting to make a delivery, and I remember saying, “Please don’t come too close. There’s nobody here.” I struggled to put on gloves and a mask before opening the door, and I was just so scared.

Normally, when I’m home, I have a constant companion in KJ. It was odd being at home without her. I’ve had her for over fifteen years. I knew Jo and Kim were taking great care of her and we Skyped a lot, so I could see for myself. KJ had been such a comfort when I went through breast cancer. The chemo left me very achy, especially my knees. It was almost like KJ could sense that as she curled up with me on the couch and laid her sweet head on my knees.

For the first three months, there was a long list of foods I had to avoid because they could cause infection. No undercooked meat, raw fish like sushi, foods that might contain undercooked eggs like quiches or casseroles, raw honey, miso products, lettuce…the list went on and on. We also had to be very careful how the food was cooked. Cross-contamination was a real concern, so each item had to be prepped then cooked separately with an elaborate clean-down of the kitchen in between. We found that using separate cutting boards was essential. A red cutting board for meat. Green for veggies. When I got home, I was still not really eating. There’s something post-transplant about the taste of metal and how it overpowers the food. So I used plastic utensils for the longest time. Protein shakes were also a go-to.

Mom came up a lot when I had breast cancer treatment. But now she wasn’t here, so Dorothy and Sally-Ann tried to fill her role. But, sadly, no matter how hard they tried, a sister cannot be your mother, especially if your mother was a retired widow the way mine was. Eventually my sisters had to go back home to their spouses, to their children and to their jobs. I remember walking them to the door, and it took all my strength not to get down on the floor, grab my sisters by the ankles and beg them to stay. I just kept thinking: “Don’t leave me; I don’t want you to go. Please don’t leave me; I don’t want you to go.”

I felt so bad. I didn’t want to be putting my sisters through all that they had gone through with me, so I tried to be a big girl and I hugged them good-bye and I wished them safe travels. Then as soon as I heard the elevator door close, I crumbled on the floor and cried like a little child. Amber did all she could to comfort me. But, all of a sudden, I was four years old again and my sisters—my beautiful, smart, talented big sisters—were going through that front door and all I wanted was to be wherever they were. “
Don’t leave!
” I wanted to shout. “Please. Take me with you.”

F
or as long as I can remember, I’ve used the same kind of day planner. It’s eleven by seventeen inches, thin, with a black cover, and it’s the simple low-tech way that I juggle my life. What was so striking to me after I came home from my transplant was that for the first time in my adult life, my day planner was completely empty. Nothing for me to do but take my medicine, rest my body, heal my spirit and get well.

My friend Bugs came to New York to cook for me for an extended period more than once. Her nickname is Bugs, but her real name is Michelle. I’ve known Bugs since we played basketball together in college. My attitude was, you always want to have a suitemate who lives nearby so you can go home and get a home-cooked meal.

The first dinner her mom cooked for me when I was in college was legendary. Bugs had done so much bragging about how well her mom could cook. But her mom was really nervous; she’s Cajun, and she didn’t really have black friends. Having me to dinner was a new experience. So she made food she thought I would like: barbecue ribs, potato salad, corn bread. But her mom was so nervous she burned the ribs.

We laughed about it later and I said, “What are you comfortable cooking?” She replied etouffee and I said, “Well, whoop up some crawfish etouffee.” Bugs inherited her mother’s talent for cooking. It brings her much joy. She came to both my parents’ funerals. I went to her dad’s. Thankfully her mother is still alive and lives close to Bugs and her husband, near Atlanta.

Bugs left her understanding husband, Darren, back in Georgia to come cook for me. I was a bridesmaid at their wedding, and now I finally forgive Bugs for the puffy powder-blue dresses she made us wear. Her only child, Michael, had recently left for college, so Bugs was experiencing a little empty-nest syndrome. I couldn’t imagine having a stranger in the house during my fragile post-transplant time, so Bugs came to my rescue.

She came in and started making all of her specialties: chicken gumbo, cabbage rolls,
great
food that normally I would devour. I said, “Don’t be offended if I don’t eat. You go ahead and prepare it, and it may inspire me to try to eat.” She also prepared all kinds of delicious soups and froze them so that I could have easy access to meals after she left.

Then I started watching the Food Network and ABC’s
The Chew
. Someone had the great suggestion, I wish I could remember who it was, that when you don’t have an appetite and the smell of food bothers you, watching food being made on TV can help. Watching it and not having to smell it really kind of sparked my interest in different types of food that I would want.

I couldn’t go into the grocery store, because I wasn’t allowed to go into any stores whatsoever, so I just relied on my imagination and tried to remember the things I liked to eat before the transplant. For example, I like watermelon, so I’d ask Bugs for some. And hopefully, it would taste like watermelon.

When I began to regain my strength, Bugs gave me and Amber a few cooking lessons; teaching us the proper way to sauté vegetables, how to keep chicken moist, how simple it is to make homemade soup.

There’s a photograph of Bugs teaching me how to cook on my own. I had to sit down because I couldn’t stand long.

Bugs was such a gift during those days. Cooking is in her wheelhouse, and she put her life on hold to feed me when I literally couldn’t feed myself. Everybody’s got something, but it’s also true that everybody, and I do mean everybody, also has something to
give
.

From the transplant patient advisement:

I wasn’t allowed to go to my gym, and I desperately wanted to exercise. A month in the hospital and loss of considerable weight left my body unrecognizable to me. My friends Lois Ann and Cathy set up a fitness Wii in the TV room. It was so much fun, playing simulated games of tennis, basketball, bowling. You’d be surprised how much of a workout that is. It felt great to move again. Bugs and I had some heated battles playing that Wii. We’re both
very
competitive. It was another perfect gift.

Amber moved into my apartment, and for months she was my lifeline to the outside world. Her best friend, Crystal, took care of Amber’s dog, Frances, a beagle and Australian mix, for a month until she had to travel. Then Amber’s friend Stephen stepped in and took care of Frances for another two months. My family began to text Amber, because they knew she could answer their questions. They also used her as a second set of eyes. If I had told them “Everything’s fine” once too often, they would call Amber to say, “Okay, what’s really going on?” They knew that I might be able to talk on the phone and sound perfectly okay, but at the same time, I couldn’t walk down the hall without pain.

Amber also played security guard when people from the media and entertainment world wanted to come and see me. In the first one hundred days after the transplant, I was allowed to be home, but the orders were clear: The risk of infection is great, so keep visitors to a minimum. Every room in the house had big industrial-size jars of hand sanitizer, and Amber made sure that everyone kept to the regimen.

From the transplant patient advisement:

I remember so well doing a story about breast cancer thrivers and being shocked at how cancer can be a wedge in a relationship and just destroy it. I interviewed a young woman whose boyfriend said, “I can’t do this. I’m out of here.” I had to lean so heavily on Amber after the transplant. And I have to say the post-transplant months weren’t easy for me or Amber. I made it tough on her because I needed her assistance, but I also had so much going on in my body that I couldn’t always be clear. It was like, “Come here. No, go away. Why aren’t you here?”

She was very good about being present, without getting in my space. I needed the comfort of having her close, but I just couldn’t engage in regular conversation the way we normally do. She’d say, “Okay. I’m here, I’m going to sit right here with you. We can watch TV or we can listen to music. We don’t have to talk, I’m here.” And that was so incredibly comforting.

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 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:

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.