No Day But Today: On Cancer, Adoption, and Family
It took her until January to tell us, either because she didn't know, or because she wasn't telling. As I was sitting on the side of the road, on a broken-down bus during my commute home from work, I got The Call. I've been waiting for The Call, to be honest, for probably 20 years. I had every reason to think it would come, because I pride myself on being someone who Knows Things.
Hi Ant, it's me. So, I talked to the doctors today and, it's not very good. It's cancer.
When I was a little boy, Mom would read to me at bedtime. My favorite was "The Wizard of Oz." On that night on the side of the road, it was hard not to notice the irony. It was almost as if I was in an Oz all my own, where instead of the world exploding with color, I walked through a door and was left in a world devoid of it, all blacks and whites and grays, left alone in a land without a heart, a brain, or courage.
She had been sick for awhile, and I had been pushing her hard, thinking that she was withholding information from us, to keep us from being scared. I had last seen her at Thanksgiving, but even before that, she had been complaining about head pain, since before the summer. She told us – to note, when I say “us,” I mean my brother, my sister, and me – that the doctors had diagnosed her with a mini-stroke, and that they would continue to monitor her for signs of a worsening condition. The pain eventually spread to her back, worsening to the point where she could no longer work. Scans led to more scans, and bloodwork, and fear, and then waiting. Way, way too much waiting. And then, confirmation.
When Mom told me, I asked her where the cancer was.
I asked her how much there was.
I don't know that.
I asked her if it had spread anywhere else.
I'm not sure, they have to do more tests.
I asked her how she was feeling.
What are you gonna do, ya know?
I asked her what course of treatment the doctors had advised her to commence.
Well ... we have to talk about that.
I was calm, in control of the conversation, of my feelings, of my tone, my voice. Not my head. Like a duck paddling on a pond, the surface was calm, and never betrayed the frenzied feet paddling to stay afloat beneath the surface of the water. She told me not to worry, that everything would be okay. I didn't know that, couldn't know that, not in the way I need to Know Things, because it's cancer, and how do you know things about cancer when the only thing we know is that we can't beat it yet?
I told her I loved her, that we would support her in whatever ways she needed, and wanted, and communicated. But me? I wanted her in treatment immediately. I kept that to myself, even when she told me that she had to consider whether or not she would want to receive treatment. My mom has lost a father, a brother, and a sister to cancer. As a two-pack-a-day smoker for better than 40 years, she (I believe) was ashamed of having cancer in her body. She and my stepfather were both very clear, people who don't smoke get lung cancer all the time, and some people who do smoke live perfectly healthy lives; they were clear, this was not a causal relationship.
They drilled this home with me, Anthony, the son who had created an anti-tobacco initiative after having written a grant proposal at 12 years old. Anthony, who had been selected as the only teen on Governor Pataki's "Adolescent Tobacco Use and Prevention Advisory Council" at 16 years old. Anthony, who had been hugged and told by Hillary Clinton "I am so proud of the work you've done in public health" at 19 years old. And the Anthony they feared would just be waiting to say, “I told you so." No, this was a random collection of cells that had found their way into Mom's lung, not the result of smoking, or of an industry that had fed off her youth for profit.
Okay. Then that can be the story. Because the whole framework of our relationship changed in that one phone call. Things were now forever going to be the way Mom wanted, the way Mom remembered, the way Mom needed. “How are you feeling?" became the opening line in every phone call, every text conversation. This wasn't about me, not at all.
My husband and I were, and are, in the middle of the adoption process to start our family. I had never anticipated a world where my Mom wasn't factored into that family equation. My husband said that if I needed to pause the adoption process to focus on Mom, he was 100% on board, that my needs were important. No. We needed a light in a dark room to remind us that there are other places to focus our energy that aren't sad, that don't choke us at night, that don't drive us away from our desk at work to a bathroom to hide tears. And so I continued to write happy articles about adoption, about the prospect of becoming first-time dads, all the while juggling so much inside; writing became a place where I could project the happiest outside, to safeguard a battered, bruised, and unsure inside. Because Mom needed to read cute little stories, with a naughty line here and there for laughs. There needed to be the carrot of a happy ending dangling just out of reach for her, to keep her moving forward, up, away from, and out of.
There was a really tough weekend for her at the end of January, where the pain had gotten so bad that she just laid in bed, moaning and crying, an ice pack wrapped around her head, all the lights off. My stepfather couldn't persuade her to go to the hospital. You have to understand, she had been in and out of the emergency room so many times by the end of January, because of what seemed to be an ever-rising level of pain. She finally consented to going to the hospital, realizing that she couldn’t just outwill the cancer, the pain. She was transported immediately to another hospital. They found that the cancer was not contained to her lung, as per her initial diagnosis. It was in her head, her liver, the base of her spine, her hips, her tailbone.
Stage 4 cancer is defined as cancer growth that has spread from the originating location to distant organs. It is the worst stage of cancer, the last stage. There is no stage 5.
She made the decision to pursue treatment. She completed three days of chemotherapy. She started losing her hair immediately. Her appetite was destroyed. After that first week of chemotherapy, her pain level rose to an unbearable level yet again. She went back to the hospital, and they decided to stop chemotherapy, to switch to radiation, in the hopes that reducing the size of her cancer growths (described by her oncologist as "dime-sized patches") would reduce her pain. We started talking on the phone every night, something we'd not done before the diagnosis. She would describe the smallest acts of kindness in big ways.
Ant, let me tell you, the girl who does my radiation is so sweet. I complained that it smelled like burning when they were doing it to the two spots in my head, so the girl took a swab of gauze and put peppermint oil on it, and then put it under the nose in the mask I have to wear. Now it's like getting a spa treatment. It's okay.
I would listen as best as I could, and I would cry as quietly as I could, and I would counsel as best as I could. But in all the effort to conceal, there was no effort needed to tell her how proud I was. Mom has always been the kind of woman who doesn't get told what to do, by anyone, by anything. She sets the rules, and you follow them. And there is no room for negotiation. Cancer doesn't seem to know that, though, and if it does, it's one disrespectful son of a bitch. To my surprise, she has engaged this fight with more determination and bravery than I knew she had.
But in a way, there are two women here. There's the woman on the phone, who is strong, and fighting, and sounds only slightly different from the woman I've known for 30 years. She is Mom Light, but she is still there, here, with us. And then there's the other woman, a woman I do not know. The woman in the head scarves and what has become an oversized sweater. She's the woman who weighs 84 pounds and cannot use stairs or the bathtub, who needs assistance to stand from the toilet, and uses two hands to push the vacuum. The woman who still vacuums, and the woman who cannot. Two women, inexorably at war, with an outcome that is too certain to be interesting. It is the degradation of spirit, of will, and of ability. And now I know what it looks like. It hides just behind Mom's eyes, taunting us all.
But because of this fight, this persistence to beat back an indomitable, invincible foe, it seems somehow impolite to have a conversation that points to a time that could come after. A time where we might be left without. It’s that time, the time when Mom won't be here, that makes me feel small again, the little boy who just wants Mom to read another chapter of "The Wizard of Oz" before the lights go out, to end on a happy note before the darkness comes.
In March, there was a phone call, Mom telling me that she had completed radiation, and would soon resume chemotherapy. But they told her that the road to the end was likely only "months to a year."
I needed help, to be able to process the layers upon layers of this thing that dropped into the laps of the unsuspecting, or at the very least, the unready. Broadway actor Anthony Rapp, from the original cast of “Rent,” has a solo album called “Without You.” The album chronicles his time launching the show with his colleagues, and his mother's own fight with cancer. It is poignant, and heartbreaking, and inspiring. And I never thought I'd need it in the way that I've needed and used it. I reached out to Anthony on Twitter, thanking him for the album; he wrote back and suggested that I might draw some strength from attending a meeting of Friends Indeed, a support group in SoHo for those who were diagnosed with life-threatening illnesses, and for those overwhelmed by caregiving and grief.
We too often stigmatize those who ask for help. I have said for years that asking for help is one of the most difficult things a person can do, a sign of strength, to recognize that sometimes we can't do it alone. I needed to take my own advice, and try to find help in processing and dealing with the grieving process that I had begun. And so after waiting outside the door for 40 minutes, gripped with anxiety, I forced myself to go in. Mom was going through hell, I could walk through a door and listen.
And so I did. I listened. I listened so much, with my ears and with my heart and with my soul. It was hard listening, and my heart was pounding for an hour and a half. I knew that I needed to believe in all of those places, ears and heart and soul, that Mom's bad days weren't worth more than her good days, not really. Because all of those days, the good and the bad, are still Days Here, with me. I can still pick up the phone to call her, and so many people cannot. I don't have the luxury of having as much time as I'd want, but who does, really? Mom has made it to 58 years old, and that is not old. But today, with her, is worth just as much as a day 20 years from now. Both days weigh the same. And to jump to that place in my heart where she has already died, to feel that pain now, is to devalue the time that we have together, it quite literally gives time to cancer that cancer has not earned, and will not take.
To grieve now is to refute not only the incredible work that she is doing, but that my stepfather is doing as a caregiver, having become the man I never would have anticipated. His strength and persistence and sense of humor has helped all of us, not just Mom. He's the man she needs, the father we need, and the example from which we can all learn. So grief can wait.
As a goalie, my goal every game is to be perfect, to allow nothing past me. But to look at the need to be perfect for 60 full minutes is too much, it's incomprehensible, just too big. And so you have to break the game down into just the next two minutes; just be good, for two minutes.
There will be sadness ahead of us, this is true. But there is also sadness behind us. But we don't exist in the future, and we don't exist in the past. That's not where we have to live.
And so today, this day, is a day where I am working bit by bit. I am looking forward to going home to visit Mom. To sing for her on Mother's Day. To hug her, maybe not as tightly as I want, or even need, but to hug her as tightly as we can, today. Because she is here, now. And I will work so hard to bring a baby home for me and for my husband, and yes, for our Moms, because there is a time that will come later and it is unavoidable. But there's only now. There's only here. And as proud as I am of Mom, I know how proud she is of me; I've got to keep earning that. And if my husband and I have a chance to let Grandma read a chapter or two of “The Wizard of Oz,” then that will be wonderful, simply.
But as a long-lost writer so eloquently stated, there is no day but today. I love you, Mama. And I'm right here, fighting alongside you.
Because there's no place like home.
My thanks to the amazing team at Friends Indeed, to colleagues and co-workers, to close friends and family, and to my husband, for the support during the process.
But the biggest thanks are to my mom, for the courage to finally allow me the privilege of telling her story. She hasn't wanted anyone to know that she's sick, she's stayed home and out of the public eye. Living with cancer is intensely private, and profoundly difficult, so I was astounded when Mom finally said, "If you write about me, maybe this can help people get through it, if they hear about it. You have to tell people. Someday you're going to write something that's going to really help people, Ant. Maybe this is it."
Maybe, Mama. Maybe this is it.
Love you, Brave Girl.