Dear Susu #3: Love in the Time of Cancer (Part 1)

On Mothering: Selfishness, surrender, & wisdom gained from experience

With this installment of Dear Susu, I have something very special for you. 

Since launching this advice column, I’ve had the privilege of hearing from so many of you. You’ve trusted me with your stories and your thorniest questions about writing and life and everything in between. I read every email, and I wish I had the time to answer all of you—because your messages are so moving, and they push me to consider the deepest, most raw, most tender aspects of being human. 

I’ve heard from young people wondering about the future, from older people trying to make peace with the past, from people with illness who are worried about its impact on their sense of self, their work, their loved ones. But maybe more than anyone else, I’ve heard from mothers—most often mothers with children who are sick. They write so beautifully, so poignantly, seemingly at the razor’s edge.

I have long believed that illness is hardest on a caregiver. Day in and day out, they witness things that seem unendurable, even unspeakable, and are powerless to stop them. The toll of caregiving is high, but as far as resources go, it’s often neglected entirely.

To tip the balance, I picked two of these questions, and to help me answer them, I brought in the best caregiver I know: my mother, Anne Francey. Last week, we sat down for what I thought would be a thirty-minute chat that lasted almost two hours. We talked about selfishness and surrender, about wisdom gained from experience, about how we endure.

We’ll be sending “Love in the Time of Cancer” to you in two parts over the next two weeks—it’s part advice column, part interview, all heart. Thank you to my mom for her time, her thoughtfulness, and her wisdom, and thank you to Carmen Radley, my dear friend and Isolation Journals collaborator, who so gorgeously edited this conversation for length and clarity. I hope it resonates with you as deeply as it did with me.

Anne Francey, Battle of the Angels (1988, painted while pregnant with Suleika)

Suleika: Since my leukemia returned this winter, we’ve had so many conversations—about everything from how to accommodate everyone’s different needs to where we’re going to stay when I get discharged from the bone marrow transplant unit. When I last got sick, nearly a decade ago at age 22, I’m not sure we communicated this openly.

Anne: Well, last time we didn’t have a choice in terms of a setup, right? From the start of diagnosis, we were told there weren’t any local treatment options available to us, and renting an apartment in New York City and relocating our entire family just wasn’t a possibility. It was pretty clear we would be at home in Upstate New York and commute the three-and-a-half hours down to the city for treatment.

Suleika: In a way it’s been easier this time. Jon and I were immediately able to find a borrowed apartment in the city, [my brother] Adam was already here, and even though you and Dad were living in Tunisia when I got the news of my relapse, you were able to pick up and move back to New York City to help take care of me.

When we went through this the first time around, there were so many unexpected hospital stays, where you would be at my bedside, Dad would be holding down the fort by himself at home for three-month chunks, and Adam was away at college. We often felt disoriented and disconnected as a family. It makes all the difference having everybody here together now. You can support not just me, but also each other.

Anne: It’s also different from last time in that we have experience. We know in advance a little more about what’s going to happen. What chemotherapy is like. What recovering from a bone marrow transplant requires. What kind of support is needed.

Suleika: Yeah, on both an emotional and corporal level. Like I know that the transition from inpatient to outpatient is going to be really challenging. I may actually feel worse, because my body is suddenly going to have to do so many things on its own without a constant hookup to an IV pole and 24/7 care from hospital staff. For example, last time I never needed a wheelchair until Day 50 post-bone marrow transplant.

Anne: And it seems to me that last time, the huge challenge was that after your transplant, when you went to the Hope Lodge [an outpatient residential unit where cancer patients have the option to stay free of charge], you were only allowed one caregiver at a time, which meant you were constantly asked to choose between me and your then-boyfriend. That was the most difficult period, actually.

Suleika: I felt such a strong urge to get back to leading an independent life, but I didn’t know how to talk about that. Then around Day 100, I insisted on moving into an apartment of my own. The prospect of moving back in with you, into my childhood bedroom, felt impossible—because that’s not where you’re supposed to be at twenty-three years old. Transplant was supposed to be a progression toward independence. I didn’t want anything that felt like regression.

That leads me to this week’s question. It’s from a community member named Laurie. She writes:

Dear Susu,

My daughter has her last chemo infusion at Dana Farber this week—followed by three weeks of chemo at home, a bone marrow biopsy, a PET scan—and assuming they all come out clean, she will be done with chemo in February. The doctors found a mass when she was traveling the world. I flew over to Lisbon to bring her home, and she was diagnosed with T-cell acute lymphoblastic leukemia and started chemo on Christmas Day 2019, so we’ve been on this cancer journey for over two years. Sarah went from an independent world traveler working remotely to living with her parents in Boston.

Now that we are coming to the end of her chemo treatment, and the doctors are optimistic that she will be able to live her life again, I am seeking advice. We are all eagerly awaiting the end of chemo, yet we’ve become comfortable with this environment, so the future is a little scary. Plus we have been living together for a couple of years—and will miss that. What suggestions would you have for a mother of a thirty-two-year-old as we move into the phase of post-cancer treatment? My goal is to help Sarah regain her independence and to enjoy the freedom of no weekly blood draws, and to move into this next phase with joy.

Thanks,

Laurie

Suleika: I was moved to tears by Laurie’s words. But I’m wondering, Mom, does this resonate? Does any of this sound familiar to you?

Anne: Yes, all of it—Laurie’s feeling that she could make such a difference in her daughter’s quality of life, and wanting to help her, to be a good mother. I don’t know that I have specific advice to give Laurie, because I’ve learned that every situation is so unique and different, but I can share from my own experience, and from what I can glean of her daughter in this letter. And my initial thought is that I wouldn’t be surprised if her world-traveling 32-year-old daughter was very eager to become independent herself. So maybe Laurie shouldn’t think about it in terms of her needing to empower her child. Another way for Laurie to think about is that she needs to focus on empowering herself—and allowing herself to be independent.

When your child is sick, no matter their age, there is a new symbiosis. You get reestablished in your mother role, and it’s familiar and comfortable, and you have a clear cut job, and you know you can help. So realizing and accepting that this is just a temporary dynamic is very important. Keeping it very clear: This is an adult child, and the end goal is for them to take flight.

What I’m thinking about is this idea that we are separate beings. I am myself, and you are my daughter. And as much as I love you and want to be there for you, I have to be clear about what I need. I’ll be more helpful to you if I don’t drain myself of all energy. I can feel it when I get to the hospital, and I’m so depleted that my energy is off. You immediately say, “Oh, Mom, go back home”—because you feel it. But it’s as if I need permission to do what I know I need.

Sometimes I’m thinking, What if Suleika had a child who was sick? I would want you to be there for your child, but I would not want you to be consumed. That thought allows me to say, “I am a mother, but I’m also a daughter.” It allows me to balance the two. It allowed me to say this morning, “I’ll come to the hospital later, but first I’m going to do yoga.” But it’s also painful—to think, How selfish can I allow myself to be?

Laurie, these are all realizations that took me a while. I urge you to observe what you’re feeling without judgment, and also to try not to feel guilty about selfishness.

Suleika: But I do think mothering a sick child gives you a very clear sense of purpose.

Anne: Absolutely. That sense of purpose allows a mother to bear the hardship. Inside of that is a little bit of an ulterior motive, in that sometimes the caregiving makes me feel better. Last time, when you were very sick, or when I’d go to the emergency room with you, I was scared, but I also felt strong. It was in the times that I was not with you that I would fall apart. When you would say, “Today I have friends visiting—don’t come to the hospital”—that’s when I came undone.

And I was like, What is this? It’s really such an upside-down or inside-out response. It should be the opposite, right? When my daughter suffers, that’s when I should fall apart. So I realized that maybe there was a part of wanting to help, or indulging my motherly instincts, that was about me. I needed to feel I was helping you so that I could stay strong.

I recognize now that it’s a universal thing to want to help when someone we know falls ill, because it makes us feel a little less powerless. But sometimes it’s not needed, and sometimes it’s better for people to help in a way that’s bigger, beyond that one person’s circumstance. Of course, I want all the support to be lavished on my daughter, but I also like this idea of extending care to more of a fraternity.

Suleika: Has this realization—that the offer to help can sometimes come with an ulterior motive—changed how you act?

Anne: I think I’m more attentive, more observant of the actual situation, not projecting my own need to be needed. I really try to listen to what is necessary for you and to be more available to this possibility.

Suleika: Can you talk about how you developed your awareness? How you learned to observe?

Anne: These kinds of difficult times educate us about how we react and even who we are. It has been ten years since you were last sick, so I’ve had a lot of time to incorporate what I learned. When I talk about observation, it could be just reflecting on it privately in my mind, or journaling about it, or reading other people’s experiences around the same issues.

The first time you were sick, I was lost. I had no idea how to deal with this, and there was nothing out there to help the parents of an adult child. Finally, I found this book called Cancer in Young Adults: Through Parents’ Eyes by Anne Grinyer. She’s an English social worker and lecturer, and she collected essays by parents of kids with sarcoma. Only there did I see all these issues being described, issues of parents having to allow their children to live as a young adult.

This was a decade ago, and you were as immune deficient as you are now, and you would do things in the wild sometimes. This was before other people wore masks, and we felt like you shouldn’t go to restaurants and things like that—

Suleika: Or that time I was so determined to go to a party, even though I could barely function. Do you remember? It was after my first summer in the hospital and right before my clinical trial. I went to this party, and I swear to God, it was like the music stopped the second I walked in.

Anne: Because you went without anything on your head.

Suleika: Yeah, my hair was patchy, like it is now, and I was wearing a tight little tank top, and you could see my chemo port. But I had made this big effort to put on make-up and for the first time in a while, I thought I looked okay, maybe even cute. But what I saw in the mirror didn’t translate. A lot of my college friends had never seen me sick—they had probably never seen anyone that sick—and everybody was so visibly uncomfortable, either not making eye contact or the opposite, just gaping at me. Within five minutes, I was in the bathroom sobbing. Then I came home, and I could not stop crying all night. I was inconsolable.

Anne: It was so painful to see you so upset, and really heartbreaking because it changed things for you. You were trying so hard to be a normal young person, and it was the moment you understood you couldn’t be.

Suleika: It was one of the most socially horrifying experiences I’ve ever had. It signaled that it was not okay for me to go to parties, not necessarily because of how I was feeling, but because of how it made other people feel. It was also a turning point for me. It was the moment I realized I needed my mom, I needed my family, my best friends, and that the currency of love that I was aiming for was not going to be found at a Princeton Class of 2010 keg party.

Anne: That’s another thing—it’s important to think, What mirror do we give to a sick person? For really anyone, but especially for parents and caregivers. We go to the hospital, and we are looking at them, looking at them, looking at them, right? So what do they see? They see us looking.

Especially the first time, your best friends would come to the hospital and sit cross-legged on the bed, and they would touch your computer, and we were horrified. Because, again, this was before masks, before Covid, before people were hyper-aware of germ transmission, but we knew how dangerous it could be. But what you were seeing was not your own illness—you were seeing normal young people, talking about stupid stuff that would lift you up. And that’s what you needed. I had to learn that.

So I try to think, What can we give to this person we want to care for? We have to give them not only our worry, but our good energy. We have to have a life outside of the sick person, to have something else to tell them, something other than mirroring back their own difficulties.

But going back to the book, it’s even bigger than this. There was a parent of a kid who was maybe nineteen and had sarcoma, and there was nothing to do. If I remember correctly, he was from Australia, and at the end of his life. He wanted to go with a friend to England—without his parents. And he did. He went to London with this friend, and while he was there, he got extremely sick, went into hospice, and died. By himself. It makes me cry just to think about that.

So imagine the parents—it must have been terrible. But I found it so incredible that they were able to put aside their own need to be with him. They were able to say, “This is a kid who needs to do kid stuff. We won’t insist on him not going on this trip with his friend.”

Suleika: Another beautiful example of that kind of trust and surrender was when I decided to embark on my cross-country road trip after I finished treatment. People ask me all the time, “What did your mom think?” Given the physical state I was in, given the fact that I had just learned how to drive, any parent would be like, “This is a terrible idea.”

But you said to me, “Parents should have sleepless nights because their twenty-seven-year-old is about to embark on a solo road trip. It’s a privilege to have such a good worry.” Rather than worrying about a biopsy or the leukemia no longer responding to treatment. This notion of good worries or luxurious worries, I thought that was so moving. What a wonderful thing.

And what a wonderful gift you gave me, of not just letting me go on this road trip, but encouraging me and making me feel like you believed that I could do it. I wasn’t fully convinced that I could pull it off, but your support, and your faith in my ability to move forward—completely on my own—was crucial to my recovery.

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For more paid subscriber benefits, see—

• Dear Susu #2: Haunted by Heartbreak on how to move on after lost love

• Survival as a creative act: Suleika’s Studio Visit, Hospital Edition

• A half-hour reprieve with Guided Breathwork from Taylor Somerville

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Have a question for Susu?

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