Things That May Help You When a Loved One Has Cancer
Mom got sick in 2016, at the age of 66. She’d been having trouble walking for a week but kept it a secret from us, her four grown children. When she couldn’t sign her name on a check, she told her sister, who took her to the hospital.
The local hospital did an MRI and knew right away they couldn’t deal with what they were seeing. Mom was transported to Massachusetts General Hospital in Boston, two hours away from her home. There, she would end up having access to trial drugs that would more than double her life expectancy. But we didn’t know that then. We just knew there was a growth in her brain, in a bad spot, near the stem.
While the surgeons worked on Mom, my siblings and I were, unbeknownst to us, starting a 16-month journey into a new world with its own language. We would come to speak the language fluently, communicating with different medical teams about blood counts, CT scans, PET scans, MRIs, liver spikes, tumors, radiation, genetic mutations, chemotherapy, immunotherapy, targeted drugs, painkillers, and pain levels. This new world would become more real to us than anything that happened in “regular life.”
But all this would come later. Surgery was day one.
The operation took hours longer than expected. When the exhausted surgeon took us into the private room in the family waiting area, he told us the good news/bad news. They got all of the brain tumor, he said, but it was cancer. It had broken free from the lung after developing there for years and metastasized to her brain. Metastasized means the cancer is moving, stretching its legs, making the rest of the body its home.
When we left the room, other families tried to read our faces like tea leaves, as if they might be able to foretell what lay in store for them.
Maybe you’re reading this because today is day one for you. You’re trying to read the tea leaves. Or maybe you’re somewhere along the journey, wishing like hell you knew how this ride would end. Will today’s news be hopeful? Will it be terrifying? Will it be something in-between?
First the good news.
You will survive. You will experience the insane power of love, which will keep you going. You will feel to your core the truth of all those cliched phrases — like love is all there is — and know this truth in every cell of your being.
You will be surprised at how strong and brave you and your loved ones can be. You may experience miracles. You may receive news of remission. We didn’t get that, but some people do. Hold onto that. We did get more time than expected, and extra time becomes its own miracle.
If you’re hearing scary statistics right now, always imagine your loved one is going to be one of the lucky ones. Hope is powerful, and your loved one needs and deserves it. So do you.
Don’t believe your dread. The truth is there’s no way to know the answers; all you can do is take one day at a time. Do everything you can do to feed hope.
We started referring to Mass General Hospital as Man’s Greatest Hospital, and it perked Mom up. When it was my sister’s turn to drive Mom to Boston, they listened to Christmas carols in the car. Every time. No matter what the month. She’d fist bump Mom and tell her, “You got this.”
Tell your loved one, “You got this.” Tell it to yourself.
Cancer introduces you to fear in a way as intimate and intense as a dog at your throat. You need to find a way to survive days that have you ricocheting between hope and dread like a pinball. Along the way, people will offer advice, some of it useful and some of it that misses the mark. It doesn’t matter; what matters is that you find a way to keep going.
There are commonsense things that can help: eating well when possible, sleeping as well as possible, exercising as much as possible, trying not to drink too much, seeing a therapist, getting massages. I did some of these things and not others. People suggested I meditate. I did it when I could, but believe it would have been more useful if I’d already had it as a regular practice. That was a life lesson:
Develop good habits while life is humming along; you’ll need those tools when the shit hits the fan.
Some things I couldn’t have predicted worked well to reduce stress, earning me much-needed breathing room. The hammock on the back porch became my friend. I would head straight for it after spending a day with Mom in Boston. The trip from my house to pick up Mom, drive to Boston, get the treatments, drop her off, and then drive home could take 12 hours, a ritual that was sometimes repeated twice a week. When I got home, I would retreat to the hammock. No matter how stressed I was, I would be out like a light, always for an hour. It turns out that science can explain why my body responded so well — and so quickly — to gentle rocking. When the weather got cool, we moved the hammock stand into our living room so I could use it indoors.
Cancer involves a type of waiting that combines tedium with quiet panic and an inability to think clearly. Our first day of panicked waiting was Mom’s brain surgery, and there would be many more such days to follow. Be as gentle as you can with yourself. Bring reinforcements with you to doctor’s appointments and medical procedures. I found if someone else was in the room with me and Mom, I would feel less overwhelmed and less afraid of breaking down in front of her.
Ask professionals to repeat themselves. Take notes. Paraphrase what you think you heard. When doctors suggest different treatments, ask them what they would recommend for their own loved ones. After the appointments, compare notes with your backup person. It’s frustrating, but emotional trauma is like a 2X4 to the head. It literally makes you dumb. It’s not your fault. You’re responding normally to an abnormal situation.
Mom’s brain surgery introduced me to my first useful, and unexpected tool. I don’t know why, maybe I was remembering my upbringing in the Catholic Church, which ended when I was 9, but I asked a friend to text me the words to the rosary. He sent an abbreviated version, and I filled the hours reading those words to myself over and over.
Weeks later, my boyfriend’s mother gave me a beautiful rosary made of light blue crystal beads. Another Catholic friend sent two different prayers to Mary, Hail Holy Queen and the Memorare, both of which asked for Mary’s help. Mary appealed to me because she was the mother of all mothers. If anyone had the power to intercede on Mom’s behalf, I figured it would be she.
Someone told me that the right way to pray was to ask for the strength to deal with whatever happened.
“Fuck that,” I thought. “If I’m going to pray, I’m asking for everything.”
I started out asking for complete remission for Mom. It was only slowly, over time, as the months went by, that I started praying for the strength to deal with whatever happened. Humans have a remarkable capacity to adjust to and bear reality, even when it seems unbearable.
As Mom started cycling through various treatments with mixed results, I sometimes did the rosary before work. Each bead on the rosary became a way to release fear, dread, grief, anger, and helplessness. As I touched each bead, I shed emotion.
“Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen.”
When you say the rosary, you are saying the word “mother” a lot. There is something about the quiet repetition of the rosary that delivers you to a new place by the time you touch the last bead. At a certain point, when the prayer was nearing an end, my voice would falter as I tried to say the word “mother.” I would start weeping, take a deep breath, and then continue.
I always said the rosary while sitting in my rocking chair. At the end, I would fold my prayers, put them with the rosary beads in their special wooden box, and start the day. Science says what I was doing was reducing my blood pressure, heart rate, and stress hormone level. What I felt like I was doing was finding a way to both express and contain my fear and grief.
Other, more secular mantras, worked too. Little sayings helped me adjust my thinking and attitude so I could continue to function. “Let’s do this.” “It ain’t over ’til it’s over. And it ain’t over.” Simple little sayings.
Another one that worked for me: “This is the easy part.” It was a reminder that Mom was still alive and that was, by definition, easier than the quiet years without her that lay ahead.
Sometimes when I felt I couldn’t go on, couldn’t do what was being asked of me, I would rally by reminding myself that if I didn’t show up for what Mom needed that day, one of my siblings would have to. And that became an act of service to my family. I was doing this hard thing so they wouldn’t have to that day. I would remember what my older brother would say, “If this is hard for us, think of how hard it is for Mom.”
My siblings’ efforts meant a great deal. Like when my younger brother would take the 5 a.m. bus from New York City so he could be waiting with a wheelchair at the hospital entrance when Mom and I arrived. My family has never been one for verbal communication, but these gestures spoke volumes and, in a circumstance that could have easily torn us apart, cemented us together far stronger than before. In the bewildering world of cancer, these silent gestures were saying, “I love you, I’m not going anywhere, you can depend on me.” They were communicating love not only to Mom but also to each sibling. When our time came, we knew who would be standing watch over us.
There were two incidents over the course of Mom’s illness that felt like miracles. On those days, I woke from a night’s sleep completely refreshed. I knew Mom was still sick, but the fear, dread, and stress had been removed from me completely. Not a drop remained. It was as close to being like a child awakening and realizing it was the first day of summer vacation as could be replicated in adulthood. I felt at ease — released and restored. A burden had, quite literally, been lifted from me. I knew it wasn’t my own power that had created this mood. After all, I had been trying this, that, and the other thing for months, desperately trying to feel better. The sense of normalcy was gifted to me. I didn’t “earn” it, and the sensation lasted for many hours. I would later learn that a church had been praying for Mom on both occasions. These things cannot be explained away.
Another thing that helped was lying in the dark on the bed in my home office listening to free reiki music on YouTube. During those hours, I felt as if my soul was being nourished by sound. I intuitively understood that what was happening was healing, even if I did not understand the mechanics of it. (Turns out there’s a name for it: Brain-wave entrainment). The sounds brought me to a peaceful, still place as if I were meditating. But unlike meditation, during which I found it hard to escape from my mental chatter, this took no effort. The music helped me stop thinking and, like the rosary beads, created a space or metaphysical container that my anguish could, at least temporarily, be transferred to.
Your friends and family will offer different gifts, unique to them and their strengths, to help you get through this time. One friend would send me a text when she sensed I needed encouragement. Her gentle, kind texts reminded me, literally, to breathe, and told me I was doing a great job and that I was a wonderful daughter. Those texts served as a reassuring arm around the shoulder that bolstered me.
Another friend would text me funny stories about her family when she knew Mom and I were at the hospital. Mom loved the little snippets I read aloud. She could relate to the trials and tribulations my friend experienced raising three boys. She made Mom laugh. Those cute Facebook videos of animals also came in handy. Those precious moments when Mom laughed, those were moments we were just mother and daughter, as we always had been, not victims of a disease. Do whatever you can to welcome laughter, not only for your loved one, but for yourself.
One sweet thing many people did was to ask how Mom was. But they didn’t ask,“How is your mother?” They asked, “How’s Mom?” That tiny shift in how they posed the question signaled that they truly wanted to know, and would not be overwhelmed by what I shared. By saying, “Mom,” not “your mother,” they placed themselves on our team, with us, not removed from us, not safe behind the type of wall people sometimes erect, thinking that doing so will somehow keep them safe and ensure that terrifying situations never happen to them.
Being able to speak freely about Mom kept me sane. It allowed me to talk about Mom a lot, which I needed to do. When a loved one has cancer, and someone asks, “How are you?” you will answer with your loved one’s current health status. That’s how intertwined you become because, honestly, nothing else matters.
I used to watch deathbed scenes on TV and movies and think they must be so unbearably sad. But during Mom’s last days, there was no place on earth I’d rather be, than with her. That hospice room contained everything — and the only thing — any of us have. It is love. I felt its power for the 16 extra months we had Mom, I felt it in that room, and I feel it now. Love is our one true superpower. And up until the day we die, we are living.
So take it one day at a time. And remember . . .
You got this.