Everyone’s journey is different. Your disease is different. It may be more or less dire, more or less debilitating. It may be acute, episodic, or chronic—last for years, decades, or the rest of your life. You may be working full-time and your income and benefits are critical to your family. You may be retired and burning through your savings. Regardless, the strength and integrity of your personal support team matters.
Maybe you’ve relied too much or too little on your family and friends. As difficult as it is, are you truly aware of what else is happening around you? It’s never just your worries as a patient. It’s what is getting dropped while you and those you love deal with the illness. What did you miss while in the world of active treatment? What did people protect you from while you were fighting the battle? Who was there for you too much? Who was there too little? Somewhere in the liminal space between remission and relapse (or big treatment to less treatment) is time for another “R” and that’s to reset.
How is it all going—really? As you enter the period of survivorship, you’ll want to rethink, restrategize, and reimagine your life now and for the future. Although it’s instinctual to think “it’s over” once you’ve been declared done with treatment (at least for now), there remains a lot to consider. You want to protect the state of your health and future health, but there are also your loved ones to consider. How have your relationships changed? How can they be strengthened? Can you fix what’s broken or do you need to move on?
Welcome to this third part of the book that’s all about living ahead. To live your best life as a survivor, your planning needs to take a shift. And it starts with the renewed reset of your needs and wants—and relationships.
It was spring 2012 and everything was blooming, both at home and at work. My MMRF duties were now coming to full fruition. We were busy supporting trials for a promising new immunotherapy drug being developed by Janssen that promised to change the myeloma treatment landscape. The drug, known now as Darzalex, was a monoclonal antibody that targeted a specific protein found on the surface of multiple myeloma cells. By binding to the protein, it would help the immune system recognize and attack the cancer. It would be the beginning of a stream of novel immunotherapy treatments that would create new hope for myeloma patients everywhere and hope for me should my own myeloma ever come knocking again. I couldn’t help but feel we may actually be able to outright “cure” this disease someday.
Nicole’s time in high school was blooming as well. She was now a senior, surrounded by the kindest of friends and a fun, supportive boyfriend. She was cherishing every “last” and so were we. Every competition mattered, every game mattered. When baseball season came around in the final months of spring, she was serving as manager of the varsity baseball team and David was already a pitcher. I did my best to be at every game and to never take work calls, especially when Nicole was cheerleading or when David was pitching. Nicole would drive them both to school every morning and to games on the weekends. I remember smiling in the mornings as they headed out blasting their music, and in the evenings when they’d come back from practice discussing the team and its hopes for the season. This was exactly the scene we’d imagined when Paul and I were working so hard to have David.
Then, just like I pictured during that speech in Stockholm, we were preparing for prom. The little girl whose safety and happiness inspired my entire myeloma journey—from having David to getting my own breakthrough treatment and ultimate CR—was now grown up. Together, we went dress shopping and found the perfect gold shoes and earrings to match. She showed me photos of how she wanted her hair done and we agreed on every meticulous detail with her makeup. The photos Paul took at the preprom get-together reminded us just how happy she was at the time.
To top it off, Nicole had finally received the long-awaited big envelope and was headed to her dream college in Boston. It was everything she hoped for—a great business program, the opportunity to cheer at a D1 level, and the right distance from home.
It was early May and Nicole and I were getting ready to leave for the weekend for college orientation. We were going together while Paul and David stayed back for a baseball tournament. The first event when we got there would be a mass at the school’s church and when Nicole came downstairs dressed in jean shorts, I said, “No way you’re wearing that to church.”
To which she responded, “I absolutely am. Church is only one part of the day.”
“You can’t. It’s disrespectful.”
“It’s what everyone else will be wearing.”
“Please . . .”
“Okay, I will change but still shorts and this is the last time you get to tell me what to wear.”
“Good point,” I said before adding, “remember to bring a sweater.” My mantra because we are both always freezing.
Eye roll but a smile, too.
And I realized my little girl, the one I have written to for seventeen years, the one I have been petrified to leave, was now leaving me. She was not going to be here chatting away about her friends or school, asking what we’re having for dinner, deciding which outfit to wear. We are the best of friends. I didn’t know everything about her life, but I could read her like a book and she could do the same with me. It was already hitting me how much I was going to miss her.
We drove the familiar route to Boston with her thoughtfully playing music we both liked and we talked.
“I’m glad you’re going with me.”
“How could I miss your college orientation? It’s going to be fun.” As I spoke, I heard the irony in my words. I had missed her first day of kindergarten. How many other days had I missed? Not for treatment, but for medical meetings, business meetings, fundraisers.
“Are you ready for your tryouts?” I asked. Nicole had been prepping the necessary stunts and gymnastics to try out for the cheer squad. “You’ll do great. Just pretend it’s the high school field, not a stadium that holds forty thousand people.”
And then we were off to check into her dorm room before heading to mass, where every girl was wearing shorts. I did my best to hold it together when the hymns were sung. She reminded me she is an agnostic going to a Jesuit school. Do not cry.
As we went to dinner, I sensed it was a bit like a reunion for many of those around us. We, on the other hand, didn’t know a soul. It became painfully apparent when they asked: “How many of you have been on campus before? How many of you are legacies? How many of you are from Massachusetts?” As nearly half the room raised their hands, I realized this would be a new experience for Nicole. I tucked it away in the back of my mind.
As we said good night (the students stayed on campus while the parents found hotels), we had the longest hug and I tried not to embarrass her—make it quick. I held my tears until I got to the car and just lost it. God, this is going to be hard. God, thank you for all the years you’ve given me with her. Please tell me I’ve prepared her for this. That I’m prepared, too.
Before I went to bed, I sent an “I love you” text. Her quick response, as always: “I miss you and I’m homesick.”
It was just a few months later when it was time to say goodbye for real, not just for the night or the weekend, but to this entire chapter in our lives I once never thought I would see. We finally drove the overpacked car to her new campus in Boston, getting there two weeks before the other families because indeed, Nicole had made the cheer squad and would be practicing for the first game. It was quiet, with the four of us quickly unpacking the car. And then it was time for Nicole to head to the field. As I would do for years to come, I left a note under her pillow that took hours to write. While it was always easy for me to say “I love you” and share my honest feelings of how much I would miss her, I also wanted her to know how proud she made me, how special she was, and that I was always just a phone call away. Later, when Nicole would use that phone call to tell me how much she was hating school and wanted to leave, I would tell her she could only leave to go to an equal or better college. Did I push too hard? Only time would tell.
Back home, the reality of her absence was potent. I felt so alone standing in her empty room morning after morning, her boxes cleared out, her closet empty, her bed neatly made. Paul was rarely around, having accepted a new position running a small company in northern Connecticut with long hours and a nearly two-hour commute. It was an opportunity he welcomed, but it meant leaving before dawn and not getting home until late. Now I would be the one driving David to high school and practice. I would be the one filling the quiet gaps when he had zero interest in talking at the dinner table. It had always been the four of us, the five of us when you add my cancer. Now with Nicole at college, Paul at work, and my cancer in complete remission, it would be just David and me.
Throughout my cancer journey, David was always the positive one—distracting me with crazy games, making me laugh with laser-sharp quips, or nudging me forward with perfectly timed dares. We had an unspoken connection, with him always there for me, knowing what I needed and when I needed it. Even well into his teens, he would gainfully give up valuable weekends for Mom’s annual rituals—apple picking at Jones Farm or skating at Rockefeller Center—cringeworthy for any other sixteen-year-old.
And now was his time to shine. All his hard work and long practices were paying off. He was only a sophomore but already a starting pitcher for his varsity baseball team. But playing varsity baseball meant he was also growing up fast, hanging with juniors and seniors who already had their independence. David was now embracing his own sense of independence, which also meant autonomy from Mom. It was not the best time for me to refocus my energies on him, especially without Nicole or Paul around as a buffer. And let’s face it, I wasn’t the easiest person. Between dealing with my cancer and the MMRF, I had become demanding on everyone. David would now get the brunt of my fearless intensity.
In short, David’s lifestyle took a radical turn as he went from having Nicole drive him everywhere and sharing their wide circle of friendships, to being alone with his mom driving him nuts. I’ve since tried to erase the memory of helping him practice for his driver’s license (which couldn’t come fast enough), asking irritating questions at dinner, and nagging him about schoolwork.
One day, as I picked David up from school, I pushed him hard with my concerns about friends, partying, grades, you name it. His every move loomed large under the peering lens of my new laser spotlight. I felt like we were out of runway with his high school years flying by and college applications on the horizon. When he got home, he proceeded to dump his backpack in his room, walk through the kitchen, and state: “I’ve had enough. You’re in my grill. Just please back off.” And with that, he walked out the front door. At nearly six feet tall, there was no way I could stop him. I texted. No response. Again. Still no response. Fortunately, I knew that he was coaching a team of young ballplayers and they had practice later that evening. Even in his toughest moments, David was responsible and wouldn’t let those kids down. My hunch was he would walk to that practice and be there for them. I waited in the parking lot and when practice was over texted “I’m sorry. Please get in the damn car.” He did.
His growing independence was bound to reach a critical juncture. And indeed, it all culminated in a party David threw at our house, which was under renovation at the time. We were living in a rental five minutes away. The local police ended up at the front door; Paul and I got the call and raced over. David was immediately suspended from the team for a number of games. This is when I realized I needed to do something. We had been on one trajectory his entire life, now both our individual needs and wants were shifting, and we hadn’t set any framework to accommodate them. We needed . . . I needed another personal reset.
My first call was to my friend Tiffany (one of the eight). She knew what it was like to raise boys having raised three herself, one Nicole’s age and twins that were David’s age. She’d known David since he was a baby at Newcomers and was always a great source for kid talk, especially now as the kids were embracing teenage independence. She was a huge help. She gave me perspective on where I should draw the line and where I shouldn’t (though I’m not sure David would agree). And because her twin boys were friends with David at school (they are still friends to this day), she was also able to give me a window into David that I couldn’t see.
Next, I reached out to both his coach and school counselor for advice. His coach, Mitch Hoffman, whom he respected greatly, reminded me what a tough age David was at and warned David how much talent he was giving up by making these kinds of mistakes. His counselor advised me to ask three questions: “Why did you throw the party? What is it that you dream of? How can we help get you there?”
What a beautiful set of questions. No judgment, simply support. David answered them clearly and in his usual direct way.
Why’d you throw the party? “It was my turn to throw a party; we all take turns.”
What do you dream of? “To play baseball in college.”
How can we help? “Find the right schools.”
Typical David. Straightforward and honest. Kind of funny . . . and yet not.
My last piece of advice came during a lunch meeting with a dear friend and colleague, Lee. It was also my most important piece of advice because it was about me, not David.
I shared what I was feeling about how my relationship with David was becoming unmoored.
“You put way too much work into your work,” she said. “It’s time to put your family first.”
She was telling me the same thing the eight said every time they tried to schedule get-togethers with me. “You work way too hard. You live on the road way too much. We’re worried about you.”
“Go home right now and tell your board chair you need to make some changes,” she continued. “Just do it now. Say it out loud. Yes, you’re late. Yes, you should have been better focused, but you still have time.”
I took her words seriously. That afternoon, I called our chairman. Together, we discussed ways to provide me more flexibility and support. My new role gave me more time to be home and present. David would never want me micromanaging him, but at least he’d know how much I cared and that his dreams were mine as well. We started by making a pact that sits in my top desk drawer to this day. It’s a contract on a blank piece of paper stating our expectations of each other. He needed to attain and maintain B grades, get to the key college tournaments (five were listed), and never miss school. In return, I would give him space and privacy. I would trust him to make better decisions. And though I didn’t articulate my pledge to be more present at home and less consumed by work, that was surely part of the bargain.
As you get through “the worst of it,” the most challenging part of your treatment, all you can focus on is surviving. As you gradually come out on the other side, you know it’s time for everyone who helped you to get back to their own lives. It’s also time for you to get back to “life.” But it’s not always that easy. You feel different because you are different and your needs and wants have changed both physically and emotionally. It has been a battle. You see the scars. It’s time to face the beauty and the destruction. What’s better now? What’s worse? What can you do to turn anything bad into good? Where is your North Star now? Most important: Whose needs and wants have changed other than your own? And how can you accommodate those now?
My myeloma journey was long. My family had been through the highs and lows while the kids were growing and my sister was struggling. And all the while I was working tirelessly to find new drugs and generate data to save my life and everyone else’s. Saving my life took over living my life. I missed the signals.
Paul was looking for calm and to get back the career he put on hold. Nicole was needing my support while at college. Karen needed a friend and confidante. David was just hoping college would get him a break from my pushing. And my friends, well, they just missed me. Nobody was looking me directly in the eye and telling me where I’d gone wrong or where I’d gone absent. People just don’t do that to cancer patients. Instead, thoughts are left unsaid. Resentment builds.
Going through breast cancer, it would become clear where I had done the reset right and where I was still missing the signals. I was well aware the sacrifices my family had made in my myeloma days and didn’t want to risk harming those relationships again in any way. I had drawn every bit of support I could from them and I wanted to replenish what I had spent, not take more. The double mastectomy was supposed to get me off the roller coaster quickly so I could do just that. But again, it was not to be. A one-and-done procedure turned into endless infections and more surgery. I was in and out of hospitals and ERs for eighteen months. It took a toll all over again. On me, on them, on everyone.
As you rethink your life and relationships post-treatment, remember that personal resets are not one-and-done, either. Here are your WTDs for living ahead.
STEP 9: RESET (AGAIN)
WTDs
Reset Your Needs
Reset Your Wants
Reset Your Relationships
There’s no doubt you are looking at your body in a new way. You may be seeing the scars from surgery, feeling the fatigue from chemotherapy or general pain from the overall experience. What can you do to start building yourself back up? It might be simple walks outside or becoming more active with your children, family, and friends. It might be checking off things on your own bucket list, excursions you missed during treatment or adventures you never thought you would have. At this point, you are still seeing a physician who can walk you through the appropriate follow-up plan for your specific cancer. The doctor you’re seeing is likely the medical oncologist or hematologist-oncologist you’ve worked with from the beginning. Sometimes patients are also referred to their primary care doctor. Once you know the plan, check your coverage to see if you have access to physical therapy or occupational therapy. See if your hospital offers or recommends other wellness programs you can do alone or with others. This can help get you back to “normal” more quickly.
It is common for survivors to feel grateful once they are through the treatment. They might be looking at cancer as a positive, something that helped them realize how precious time can be. But it’s also common to feel anxiety and depression. You may also feel stressed that the cancer may come back and you can’t handle it again. This is the time to speak with your doctor and, again, ask for a care plan. You have options—from support groups to counseling to medication.
As previously mentioned, financial toxicity is a real thing for cancer patients and their families. You may have lost significant time at work, you may have lost insurance, and you may not be sure when you can get back to a full-time job. This is the time to reach out to the billing office at your requisite center and your doctors’ offices. Start to understand the types of payment plans they offer. Also ask them to help you dispute bills that were not covered with the insurance company and/or Medicare and Medicaid. It can be exhausting but it’s worth it. The billing offices in the hospitals know how to help you fight this battle. Work with them.
Life has changed and you’ve learned a lot. Clearly, you know the importance of your health. But there’s more, much more, to living ahead than simply preparing for the possible worst.
Are the wants you established back in Step 3 still the most important? Have you identified new ones?
Would you change the balance between work and home? Would you change how you want to spend your time? Who you want to spend it with? It’s time to start with a new blank sheet of paper. Go back to Step 3 and rethink what really matters now, then write it down.
Place your new wants where you can see them every day. Life will start moving fast. You won’t get this time back to do this important bit of reflection.
Kate Bowler, author of No Cure for Being Human, and Suleika Jaouad, author of Between Two Kingdoms, share beautiful wisdom on the cancer journey and its impact on relationships. Both women were diagnosed with cancer at a young age, faced their own mortality, and needed a strong team around them. What is refreshing is the language they use to describe what happens as time passes and needs continue. I listened to a podcast they did together called “You Are Not the Bad Thing” and nodded the entire way through. Here are some of their takeaways.
Patients powering through treatment, especially if it continues for an extended time and takes its inevitable detours, can begin to feel like “too much,” a burden dragging those we love down. It can fracture precious relationships over time.
When the goalpost keeps moving, there is a sense of ongoingness. Both women speak about the challenges of being two to three years out as the toughest. Whatever you’re feeling in a given moment, there’s a good chance someone else out there feels the same.
There can be a sense of gratitude to everyone who helped and yet also one of resentment. It’s hard to live in that period “when people wanted to move on and I couldn’t.” It’s not unusual to “narrow the circle” of those close to you to those who “get it.”
Listening to these very wise survivors reminds us that cancer affects everyone. And while it can build some relationships, the longer it goes on, the greater the toll it takes. There’s only so much a person can take before reaching a breaking point. Be honest with yourself and others. Did someone let you down and was it just because they didn’t have the capacity to help? Did others make huge sacrifices that perhaps you took for granted? Was there anyone who needed you and you didn’t have the strength to get to them? Did you have children who might have been struggling and didn’t dare tell you? Whether you answered yes or no to any or all of these, remember it’s okay. It’s not too late. Talk to your people. Don’t just sweep important conversations under the rug. Communication is supposed to be hard in families, let alone families managing illness. Be courageous. Speak up. Break the silence.
As one of my favorite storytellers and podcasters, Brené Brown’s wisdom speaks to me and has helped me think through some of my darkest moments. She holds a PhD in social work and is a research professor at the University of Houston, where she’s the Huffington Foundation Endowed Chair. Her 2010 TEDx talk, “The Power of Vulnerability,” is one of the five most viewed TED talks. When it comes to resetting your life, her insights offer a framework. Here are three pieces of advice from her that have resonated with me and can help you find clarity in this next phase of your life in survivorship.
Own your story:
You’ve just been through a harrowing journey. As much as you want to ring the bell and run from it all, think about how you can use the experience to crystalize your new needs and wants in survivorship mode. Brené teaches “courage over comfort,” but her definition of courage is not the typical one that’s associated with bravery. Such a definition “fails to recognize the inner strength and level of commitment required for us to actually speak honestly and openly about who we are and about our experiences—good and bad.” Have the courage to speak openly about what you’ve just gone through even if it means exploring the darkness and it makes you feel vulnerable. According to Brené, “you have to walk through vulnerability to get to courage.” And that courage will ultimately help you check your reset boxes.
Know the difference between shame and guilt:
As you enter your survivorship and look back at the debris field of your cancer journey, you might feel ashamed of some of your behaviors in your time of crisis. You may feel like you treated a few people badly, overstepped boundaries, and failed to fully appreciate those who helped you through it. Rather than label those feelings as shame, try to reframe them around guilt. Brené’s own research shows that there’s a big difference between shame and guilt. Shame is “the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging—something we’ve experienced, done, or failed to do makes us unworthy of connection.” Shame is neither helpful nor productive, and can actually be a source of destructive behavior. Guilt, on the other hand, “is adaptive and helpful—it’s holding something we’ve done or failed to do up against our values and feeling psychological discomfort.” Guilt is good. So as you reset and reengage, have compassion for yourself and be okay with the guilt. Use it to optimize your reset. It’s a tool for transformation—for making smarter decisions, for sharpening your sense of meaning and purpose, and for deepening your most vital relationships.
Think of your relationships in terms of percentages:
During a 2023 interview that quickly went viral, Brené broke the widely accepted rule that says marriage should be fifty-fifty. She declared “marriage is never fifty-fifty,” going on to explain that she and her partner routinely “quantify” where they are so they can each adjust accordingly. For example, when her partner comes home and says he’s at 20 percent in terms of energy, patience, and kindness, she can either carry the balance of 80 percent to reach a combined 100 percent or they can “sit down at the table and figure out a plan of kindness toward each other.” As you reset your relationships, especially those closest to you that you want to nourish and grow, think in terms of percentages. Relationships work best when you can carry someone else’s 80 percent when necessary or they can carry your deficit. Some days, for whatever reason, you’re only at a 10 and you have to hope your partner can “cover you” at a 90. If you are both at 10, that’s when you want to chat.
* * *
As he reached his senior year, David was participating in the end-of-summer baseball tournaments, his final step to getting recruited to college as an athlete. He had been injured during the junior year recruiting season—two stress fractures in his L2 vertebra—and was declared finished for the season. Crushed. No games, no playoffs. Nothing. As we drove him home from the doctor’s office, tears cascaded down his face; later his bedroom door closed. My quiet knocks went unanswered. David had one more challenge he had to overcome. And these games were the last chance for the final few coaches still interested to see him. There’d be only a small window of opportunities for him to prove he was worthy of their team and school. He was officially down to the wire and out of runway.
Always good under pressure, David nailed it. Paul and I were both blown away by his unflappableness as he walked to the mound for the first time in months knowing that the next fifteen to twenty pitches would determine his direction. I was working at home when David came running up the stairs itching to share the good news.
“Coach Kinney just called. I’m in!”
I jumped from my desk, hugging him and screaming. The joy on his face was something I’d been waiting years to see. The injury, the recovery, the stress of being “on” when the right person was watching. It is the one dream David has had since he first hit the ball off the tee with his dad: playing baseball for as long as he can.
Nicole was now in her sophomore year in college. I was speeding up the Mass Pike to catch her before seeing her cheer at the big rivalry game. I would meet Paul later, as he’d be arriving late after watching David at a baseball tournament. By now I could drive the route to Boston blindfolded. Between the frequent visits to Dana-Farber and watching Nicole cheer at both football and basketball games, Paul and I had seen her relatively often. Freshman year had its growing pains but I was confident things would only get better as Nicole coasted more comfortably into sophomore year.
I was picturing trying to find her between the alumni tent and the football field, amidst the parades, Fan Day festivities, and endless tailgates, bracing for the inevitable tension in the air (literally) because Nicole strived for perfection in her routine. This was not about looking pretty and dancing casually on the sidelines. This was about physicality—nailing the basket tosses, tumbling passes, and doing three standing back tucks in a row. She demanded the best of herself and never wanted to let her team down. I was so happy to see her no matter how brief the visit.
As I came close to my destination, I was taking another call from a myeloma patient seeking my help. I’d been on the phone for the entire three-hour drive. While I had decided to step back from my role as CEO, I could never say no to patients. And as my commitment in the myeloma world continued to grow, it meant more calls from more patients who were struggling and relapsing. I always kept a list with their numbers so I could multitask while on the road; otherwise, there was no other way to get back to everyone. This particular patient had also been through a grueling transplant with a sibling but was facing relapse with no obvious shortcut to remission again. Could I find a solution for him? The intensity of the moment made me miss my exit. I didn’t have any good news for him to lean on. Then, just as I hung up with a heavy heart, the phone rang again. It was Karen. We hadn’t spoken in a week, an eternity for us.
“Are you with Katy?” I asked, knowing she was also on a visit to her daughter’s college that weekend. She stopped me right away.
“Kathy, I’ve been trying to reach you. Where have you been? Why haven’t you called me back?”
“Work has been crazy. I’m so busy. Sorry.” (I’d later come to loathe the excuse “I’m so busy.”) “I’m trying to get to—”
“I have breast cancer,” she said quickly, her voice wavering as she cut me off from ranting further. I pulled over to the shoulder to catch myself. WTF?