Editor’s Note: This post is in Riva Thompson’s words, as told to Julia Bobkoff.
Cancer has hit me like a rogue wave. Even the strongest swimmer can be sucked under. Just as you feel you are about to drown something gives you the strength to kick and push your head above water. For me that’s been my faith in God and His promises for my life. And even though that faith is my anchor, I still struggle against every breaking wave or unexpected undercurrent. Cancer is an ocean so ferocious it wants me to give up and drown. But I’m a fighter, a warrior, and I refuse defeat.
Two years ago I lost my father to his own battle with the sea—a rare form of Leukemia that took down one of the strongest swimmers I have ever known. Usually he was the one who rescued other people from the surf. This is more than metaphor. My father even served in the Coast Guard, but this time he had to face the storm surge on his own. My father knew how to survive, but this cancer was the one thing he could not beat. He was gone in less than four months and my world was instantly turned upside down. Our family had already weathered great loss through tragic circumstances; both my sisters died young from complications related to heroin.
My father died nine days after my 45th birthday. By 46 I was facing my own cancer diagnosis, stage 4b colon cancer. I realized I now had to battle the same fierce waves he once endured but without his protective presence at my side. My father taught me how to be strong in the toughest of circumstances, how to not be defeated by my emotions, to stay level-headed in all situations. My father always used to say to me, “You can’t wear your emotions on your sleeve, Rivie,” That was one of his nicknames for me. “You have to stand your ground. Remain vigilant. Keep an eye on everything around you because we have enemies in this world.” My father had two sides to him. If you were in his good graces he would protect you with every fibre of his being. But if you crossed him you became his adversary. There was one time we argued on the phone when I was in my early twenties. We both hung up and did not speak to each other for a year. I was fearful he might reject me if I contacted him. And he was too stubborn and prideful to call me. One day I found the strength to reach out and he said, “Took you long enough! It’s about time.” And we laughed and from that moment on there was never a period we went without speaking or remained angry at each other.
But now, in the midst of my health crisis, I could not turn to him for his gruff but encouraging words. My father never sugarcoated anything, and sometimes that is exactly what you need when weighing difficult medical decisions. Here are some of the things I faced without him: a partial colectomy to remove a five centimeter tumor that was almost completely blocking my colon, powerful side effects of chemo, nausea, vomiting, and fatigue so extreme I could barely lift my head off the pillow. There were also weird, chemo-induced after effects like cold-induced neuropathy that made drinking refrigerated liquids feel like ice shards going down my throat, and if my hands or bare feet accidentally touched a chilly surface I felt a zap like an electric shock going through my body. Worse than this were the coronary vasospasms—a sudden constriction of blood vessels that could lead to a heart attack. I experienced a terrifying tightening in the chest like a vice grip and pain shooting down the backs of both arms. There was also pain in my jaw and across my head. I wanted my father to hold my hand, to give me advice, to tell me that everything was going to be OK. Instead, I had to rely solely on my medical team who determined that the chemo was proving too much for my body and would have to be administered differently. They then sent me to the same hospital, Mass General, where my father spent some of his last days, and I took comfort there from small things, like ordering his favorite meal on the menu—a cheeseburger. And I recalled that it was here, in this hospital, that he began to say goodbye to me.
The one day I visited him alone he said to me, “You know Rivie. You and I are good. We have nothing but beautiful memories between us. No regrets.”
But I didn’t like where this conversation was going. “Dad—what are you doing, saying goodbye to me already?” I looked at him fiercely. “You are not going anywhere yet.”
But only two months later a final photo was taken of us. He was in rehab struggling to find a way home—a place he would actually never arrive. He turned to his wife Donna, “Hey, take a picture of us.” He had just handed me the last birthday card I would ever receive from him. We were sitting side by side, my hand in his, just like when I was a kid. I could feel his huge fingers wrapped around mine. He suddenly released my hand and leaned over to surprise me with a kiss on the cheek—just as the camera snapped the image. This was my goodbye kiss. I think my dad knew all along. And that day in rehab became the last time I ever saw him fully alert and able to speak to me. Donna called me a few days later. “They’ve only given him about two weeks,” she said. And just as predicted the waves surged and took him under. He was gone in only two days, a time much too short for me to fully process. I am only beginning to now, as I face my own battle with the sea.
And lately that water has turned very cold. I am at the point where I am hitting the undertow. I feel the current tugging at me and I am trying to resist it. The darkest moment hit me two weeks ago. I was brushing my hair, standing in front of the mirror. I was doing what I always do, which is put on my best front to the world. As I brushed, strands kept falling out. I prayed it would stop. Then I pulled my brush away and saw mounds of hair on the bristles. The sight devastated me. I instantly burst into tears, something I had not done much of, no matter what I’d been through in my life. I kept hoping it would stop but the more I continued to brush my hair the more came out. I threw the brush down. In a last effort I ran my fingers gently through the crown and more came out. I had hair all over my fingers and falling to the floor.
Anyone who knows me understands that I have always loved my hair and kept it long since high school. My father always said with pride, “My girls have beautiful hair.” We all laughed, because he was bald as a cue ball. He would also add, “Don’t worry if you ever lose hair like me. Bald is beautiful.” He even had a little statue that said, Bald is Beautiful. I now keep this on top of my bureau. It was staring at me as I walked into the bedroom and tossed my clump of hair on the bed. Donna had given it to me during the vasospasm crisis, and now the little statue gave me an ironic boost as I stared at the dark tangle on my sheets.
My hair has always been thick and beautiful. It is my signature—something I am known for. The three things people always notice about me when I walk into a room are my height, my hair, and my physique. It may seem shallow, but these outer gifts give me a form of inner security. My mother and my sisters and I have always been known for our striking hair. Even if things were hard in our personal lives we could dress up, style our hair, and present confidence to the world. My oldest sister, Lauren, was the designated family hairdresser. My mom could just put barrettes in our hair, but Lauren could style us like princesses. She combed and braided our hair in every style possible. Thanks to her teaching, I was able to French braid my own girls’ hair. I will never forget when our beloved middle sister, Melanie, lay dying from an overdose in the ICU. The last time Lauren saw Mel she wept over her as she brushed and braided her long, curly hair. It was a final act of love.
So, you can understand how shocking it was to me when I looked down at that brush and saw the curse of chemo. The doctors had told me that this type of treatment might make my hair thin, but I wouldn’t lose it in clumps. They were wrong.
After the first shedding I called my friend Renee, crying. We have been like sisters to each other since we were seven. She was there for me through the loss of my own siblings, and she’s been faithfully taking me to all my appointments and helping me with anything I need. Thanks to her I have never had to walk into a hospital alone, and though I miss my father daily, God has sent me good friends. Since she was a teenager, Renee’s suffered from myriad health problems and currently fights fibromyalgia. Her compassion and love abound. The first thing she said to me when she heard me crying was, “I am so sorry honey.” These were not empty words. I could feel her empathy straight through the phone.
A few days later she arrived at my house to take me into Boston for an in-patient treatment. I always ask her to get out of the car so I can give her a proper hug. This is our little tradition. She gave me a long embrace that day during which we were both silent. Finally, she looked at me and said, “I can’t make your hair come back and I’m so sorry, but I can give you this.” She opened her hand and presented me with a beautiful ring. It was a sterling silver band with a fire opal in the middle. She then showed me her hand which sported a matching ring. Even though we’ve known each other our whole lives and she is an honorary aunt to my children, this moment brought us somehow closer. It was a new kind of connection, and though I’ve always considered her a sister, the bond has never felt stronger than today.
A week later, clumps of my long hair became impossibly knotted. I was wearing it up to protect the fragile strands, but ironically this made the situation worse, twisting it into a kind of dreadlock I could not get out. It was both funny and horrific all at once, the left and right side of my head connected in the back in a huge, matted rope. I wanted to call Renee right away, but she was in Maine camping with her family. One of my daughters rushed over to help and for two hours attempted to detangle the mess. I used to be the one French braiding her long blonde hair. Now she wanted me to stop fidgeting and let her do her magic. Eventually, she had to give up. “Wait for Renee,” she said.
When Renee finally got back she came right over and tried to separate the clump with expensive haircare products my boyfriend overnighted to me. When that failed we resorted to olive oil. In the end, we had to give up and cut it out. It seemed as heartbreaking to Renee as it was to me—as if it was happening to her at the exact same time.
I now have parts of my head where you can see my scalp, and the strands are very fine. I’ve gone through every phase of grief over the loss of my long, dark hair as if I were experiencing the five stages of grief. I’ve mourned a lot of people, and I know these stages well. As we all understand, the final stage is acceptance, and that is where I am finally at.
So, later this week, Renee and I will go to the cancer center and talk to them about a wig. They have an area there where they fit you and the wigs are free—this is what they do as part of the overall care of the patient. I fully expect that during the remainder of my chemo treatment, which is another four months, I may lose the rest of my hair. But my boyfriend, Seth, said to me over the phone the other night, “I didn’t fall in love with your hair. It’s who you are on the inside. You can be bald. Or scarred—doesn’t matter.” Then he added, “Do you want me to shave my head? Because I’ll do it.”
“No! One of us has to have hair for me to run my fingers through.”
He ended with,“You are my warrior. My Wonder Woman. We’ll fight this together.” Wonder Woman—that’s his nickname for me, and I call him my Superman.
When you are in the ocean, the undertow is the most dangerous place to be because it can drag you down in a matter of seconds. It is the area where the current moves the swiftest—a merciless vortex. I am swimming hard against that undertow. I feel the love of the living around me as well as my father and sisters, cheering me on. And just like a competitive swimmer who must shave her head and remove all body hair to finish the race well, I will do whatever it takes to achieve the goal of living and fulfilling the call on my life. I can thank my father for his legacy of courage and never-say-die attitude. These two traits, combined with my faith, keep me going. The swim is hard but I still see the shoreline; I won’t give up.
Photo courtesy of Riva Thompson