Fatal to Fearless, page 19
On the one hand, caregivers may feel joy and pleasure in feeling needed, in knowing they are helping someone they care about deeply. On the other hand, however, there can be feelings of “no control”—of simply not understanding how to help, where to step in, and when. They can be fearful watching you struggle and praying they don’t lose you. They might want you to fight more, or less. Often, they quietly carry too much of the burden, which creates hidden anger and resentment. They may even suffer their own health struggles as a result of the added responsibilities and stress. Caregivers can prioritize the patient at their own expense.
As patients, the best thing we can do is communicate our needs clearly, often, and thoroughly. And show gratitude. As caregivers, the best thing we can do is speak up, and articulate our own needs as precisely as possible, because as much as we want to help the patient in our lives, we have our own needs, too. It’s okay—actually, it’s critical—that you admit when you’re reaching that maximal point of your own stress, your own worries, maybe your own health issues. Chances are that caregivers are rarely helping just one “patient.” They are often juggling a few people in their day-to-day lives, such as their own family members including parents and children. Caregivers need care, too.
My Sister Has Breast Cancer
Those four words—“I have breast cancer”—that my sister blurted out to me on the drive to an otherwise festive event sunk my heart even further down following my call with the myeloma patient. I think my heart lurched forward, too, as if trying to reach out to her. Here was my best friend, my confidante, my twin, now in the suffering seat while raising three kids on her own. In a reversal of misfortune, she needed me now and I’d been “too busy to return a quick call.” I did not see this coming, not even after all she had done for me and my salvation.
“Are you fucking kidding me?” I said, the guilt punching me in the gut. “I’m so sorry.” My remorse was overpowering knowing that I’d been answering everyone else’s calls except my sister’s. I never dreamed she could be calling about having cancer. I instinctively shifted into navigator mode, firing away questions.
“How did you find out? What have they said? What stage? Is it early? Which hospital did you use?”
“They found it on a mammogram at the local hospital. I knew something was wrong as soon as they put me in a separate room.”
While still pulled over to the side of the road, I searched for a scrap of paper in the crevices of my car, wondering why I was always driving and taking frantic notes.
“It’s small—fourteen millimeters—and I’m just hoping it’s early,” Karen added. “I don’t know what stage yet.”
I pictured her mind racing from thought to thought as she scrambled to pull herself together for her daughter. Like me so many times over, Karen was now the one trying to be normal while her heart was cracking. I sensed her urgency and tangible fear like they were my own. It was a mirror and a window all at once.
“We’ve got this,” I assured her. My words were a carbon copy of what she’d said to me years before. “Let me get to campus, send out a few emails and texts, and I will call you first thing tomorrow. I promise, it’s going to be okay.”
Karen officially became the patient and I was now the caregiver, researcher, coordinator, driver, calendar helper, standby surrogate mother, advocate, and beat-down-the-door-to-get-the-best-care crusader for Karen’s right treatment. In an exacting, seesaw role reversal, she netted the knot in the stomach and I became saddled with the fear of losing her, the struggle of watching her suffer, and the need to make sure her children knew we’d get through this. We’d take the worry away whenever and wherever we could. It’s just part of being a mom. And for Karen, even harder, now a single mom.
As I sat in the parking lot with this news that reshuffled my priorities, I fired off emails to the myeloma leaders at each of the New York centers asking them to connect me to their breast cancer teams. The next morning, I followed my playbook. I googled “just diagnosed with early-stage breast cancer” and clicked immediately on the American Cancer Society site followed by BreastCancer.org. I wrote furious notes in my notebook marked “Karen’s breast cancer” and drafted all my questions in the right-hand margin so I could come back to them—checking them off along the way. The only words that I could start with based on my conversation with Karen were “invasive ductal carcinoma, or IDC.” She was still waiting for the lab results from the needle biopsy done at her local hospital. And while the sites explained each word of I-D-C, it was hard to understand the next steps and where to take them. My playbook drew a blank to fill.
I explained to Karen that our next step was to find the best doctor. We scheduled appointments at Memorial Sloan Kettering (MSK), Weil Cornell, and Mt. Sinai. Meanwhile, Karen reached out to friends she thought could be helpful. She wanted to wait and see which doctor she liked and trusted, which center gave her a good feeling, and who seemed best at her specific breast cancer.
Our urgency picked up a few days later. Karen and I had been invited to a big American Cancer Society fundraiser honoring Deborah Norville, who had been so supportive of us at the MMRF. I was seated at the table with Deborah chatting away when Karen walked in with a forced smile and hasty hug. I saw something in her eyes and mouthed “Are you okay?” across the table.
“I’m Stage III,” she mouthed back, her eyes welling up. And just like that neither of us could eat let alone manage to smile and get through the festivities of the lunch. Normalcy had been eviscerated. There was no plastering over the panic. As the lunch ended, we raced toward the lobby and Karen exploded in front of me, her whole body shaking.
“I just went from a little something to a full-on nightmare,” she said. “They called me while I was in the car with Tyler and told me they found the cancer in eight lymph nodes. I’m so screwed.” The tears streamed down her face as she continued. “How the hell am I going to handle this? Tyler should be focusing on school, not taking care of me. How do I tell JJ and Katy when they are off at college? I can’t just call them.”
I let her purge all the concerns and unknowns that had erupted at the top of her mind. Karen would have to act fast and figure out health insurance needs she lacked. “What about my job?” she went on. “The insurance? I don’t have anyone to help me.”
“Yes, you do,” I explained calmly. “I’m here. I’m not going to leave you. We’ve got this—it’s what I do. Let’s start with the right doctor.”
Based on our combined research, Dr. Larry Norton at MSK became one of our targets. I knew Dr. Norton from cancer conferences and had sat on a few good panels with him. He’d gained an illustrious reputation in the breast cancer field and cared deeply about his patients. As we headed into his office, he announced that he had limited time because he had a black-tie fundraiser that night. My mind went to the reality: As soon as doctors reach the pinnacle in their field, they get dragged into the fundraising circuit and taken out of the clinic. Norton, however, did not disappoint. He had his computer up and ready. He had read Karen’s entire history and laid out the options for her as clearly as possible: lumpectomy or mastectomy, followed by some combination of chemo, radiation, and hormone therapy with follow-up treatments that would vary depending on the results. Karen picked the lumpectomy route, grounding her decision with the best information she had at that moment and based on where she was in her life. A new job was about to begin in weeks, making the time for recovery from major surgery impractical. What helped in the decision-making process was knowing that MSK had a satellite center that was a spectacular fifteen short minutes from her home—a true satellite center. Better still, Norton would be “on call” whenever she needed him.
The Cancer Twins and the Sibling Switch
Once team and treatment decisions were made, the actual hand-holding part of caregiving began. I gave my bag of beautiful scarves—a cornucopia of spectacular florals and artful geometrics—matching every sweater I owned to Karen. I bought her the soft warm blanket I knew she needed to take with her on appointments to buffer against any chill. As I watched my best friend and soulmate stay as strong as possible, I caught every emotion—every beat to beating this thing, from the waiting game for results and the lousy side effects from the drugs, to the chronic fear of dying, to the unavoidable anxiety around the burden she felt her illness placed on others.
But at the same time, I also was acutely aware that every person’s journey is their own. I couldn’t possibly know what was really going on in her head. She’d just left the starting line, whereas I was in complete remission. She was a single mom in a new job trying to make a name for herself all over again whereas I had a devoted, working husband. She had two children in college and she didn’t want them to worry while they were away, nor did she want to burden Tyler with the ups and downs of the lengthy treatments. And knowing how to help, and when to help, was not always easy.
Karen kept a coterie of dear friends and even had a boyfriend who wanted to make sure she was okay. Tyler was thankfully home every day and immediately stepped into the role of caregiver while JJ and Katy were in constant contact. I gave a lot of thought to how I could best serve her on the “roster” of caregivers without stepping on anyone’s toes. Reflecting back on my own experience through the transplant, I recalled how I loved Karen alternating with Paul. They worked so well together as a team, each with their own style of caregiving and time for themselves in their rotation. And it gave each of them a break and time to get back home to work and the kids. I tried to do the same, alternating visits with Karen’s other people while I filled in the caregiving blanks.
She received her chemo at the local MSK hospital. We sat together watching TV and sent smiling selfies to the kids and cousins to let them know she was doing okay. And we spent hours talking about the kids, her fears, how messed up it was that the two of us were the unlucky twins. The cancer twins.
Karen soldiered through the treatments as the holidays approached and the older kids came home. It was another Christmas with the cancer cloud hovering above us. Her hair began to fall out, her skin dried up, and she was nauseated often and relentlessly, and that only added to the exhaustion. Her kids came up with an idea: take Mom to get her head shaved. We made an event of it and went together into New York City. I held her hand while the remaining strands fell to the floor. Karen smiled and cried at the same time and I watched her children trying to be brave when they had already watched the toll these treatments took on me when I was in treatment. We then found the perfect wig and headed out to admire the Rockefeller Center Christmas tree a block away. We took photos as if everything was normal.
But when I sent the photos to Nicole and David, I was surprised by their silence. No quick response, which was unlike them. I called Nicole.
“Mom,” Nicole explained. “You’re identical twins. You brought us right back to our own Christmas PTSD when you were doing your transplant. We are the ones living with wondering if you both might die.”
I was stumped, speechless. She was right. How could I have been so blind? I could barely deliver a response other than to agree, and that I understood where she was coming from. I had struggled to grasp what Nicole had been through, or what she was currently going through. She and David were caregivers, too. But I was only beginning to understand what it was like to stand in their shoes.
The Tables Have Turned
Let’s face it, you can’t know what it’s like to be a patient until you become one. But neither can you know what it’s like to be a primary caregiver until you become that, too. Neither role is easy. They both have their challenges and rewards. The patient-caregiver relationship is incredibly personal. And everyone’s experience is different.
My myeloma journey was long thanks to my smoldering state. My primary caregivers, especially Paul and Karen, rode it with me all the way through. Paul and I had to work together to achieve both the needs and the wants we’d established back at the beginning of my cancer journey. He also always made himself available for the endless doctor appointments, driving me where I needed to go, taking notes, picking up meds. Karen was my sounding board every time tests came back unusual. She was my side-by-side guinea pig going through the tests and my provider of a new immune system. When transplant time came around, they were both in fifth gear giving up anything and everything else around them, living at the hospital, driving back and forth from Boston to Connecticut, worrying about all five cousins together. And my steadfast group of friends, the eight, were always there to make me smile, bring me food, and go for walks.
Being a caregiver for my sister was a gift—finally, some actual payback for all she’d done for me. It was hard for Karen to let anyone in. Probably because she knew how much my needs drained her, she didn’t want to do the same to me. But as a single mom, trying to raise three children and pay multiple college tuitions, she had a lot on her plate. She needed me most for her research, for finding the doctors when we needed to chase them down with questions, and joining her on some of the tougher treatment appointments. If I came to realize anything, it was how important it is for the patient to constantly communicate what they need. With as much advance notice as they can. And delegate. It’s so hard to delegate clearly. Everyone wants to help but it’s hard to react to surprises in a busy world.
In the writing of this book, Nicole shared some of her choicest advice in being a caregiver: “There’s a difference between caregiving and sacrificing. You must do things that bring you joy when you’re a caregiver or you’ll burn out and resent the situation you’re in. With caregiving, you have to take away the guilt of taking care of yourself. Only then can you be there for the person who is relying on you.”
Now here are the WTDs for taking care of your caregivers.
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STEP 10: RECOGNIZE YOUR CAREGIVERS
WTDs
Know Your Caregiving Needs
You need a knowledge partner
You need a logistics partner
You need an emotional support partner
Know and Respect Your Caregivers’ Needs
Know your primary caregiver’s wants and needs
Expand your team to share the burden
Communicate clearly and often
Have empathy
Show appreciation
Get Outside Support
Online support
Palliative care resources
Respite care
Hospice care
Family and Medical Leave Act
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WTD 1: Know Your Caregiving Needs
We’ve talked a lot about the importance of your personal support team. But equally important is understanding and communicating your specific caregiving needs. What you will need will typically fall into specific categories:
You need a knowledge partner Having someone who can help research your disease and serve as a sounding board can help you think about your medical decisions more clearly. You may have a family member, child, or friend who is savvy on a computer and can help you stay on top of your disease, treatments, and new trials that might emerge. You’re looking for someone who is not scared of the science lingo and willing to sort through it to answer questions you might have. This individual can also be very helpful on those doctor visits where you have to make an important decision. You may want to give them access to your medical records. To do so, you will need them to sign a specific form at the doctor’s office.
You need a logistics partner Just dealing with basic logistics while dealing with cancer can be overwhelming. Having someone to help makes a huge difference.
Medical errands: While you may feel well enough to drive yourself or use public transportation, there will be days when you don’t. You need to know who can help. Who can drive you to the doctor’s office, to the hospital? Who can pick up your prescriptions for you?
Coverage battles: Battling it out with the insurance companies and Medicare/Medicaid can be exhausting. Can one person help take this on for you? Can you get one person on the payor side to serve as your case manager?
Family needs: While you’re battling your own disease, you might also be taking care of your parents, your partner, or young children. Depending on where your life is, you need people to step in and support them while you can’t. You can’t do it all so having a support plan here becomes critical.
You need an emotional support partner Know who you can talk to. You’re looking for that person who understands you, relieves the stress, and even makes you smile. These are the people you turn to when you’re having a tough day or a good day.
WTD 2: Know and Respect Your Caregivers’ Needs
According to a study by the NCI, there were 2.8 million cancer caregivers in the US as of 2015. That number is only growing. The study showed that cancer caregivers are typically unpaid family members or friends (as opposed to nurses) and carry a heavy burden, giving 32.9 hours each week to caregiving, communicating with healthcare professionals on behalf of the patient (62 percent), and helping in making end-of-life decisions (40 percent).
Laurel Northhouse, a nurse scientist at the University of Michigan School of Nursing who was not involved in the study but who offered a comment for the NCI’s media, wrote: “The intensity of the cancer caregiver experience can lead to emotional distress among caregivers, which can, in turn, affect the patient’s well-being.” While more research emerges on this important topic, it underscores how important it is to understand and respect your caregivers’ needs. Here are ways you can reduce stress on your caregivers:
Know your primary caregiver’s wants and needs You may select one primary caregiver or maybe two. Often, this is a family member living with you or nearby. While it’s good to have a specific lead for caregiving, it can also increase the burden on this one person. At a minimum, know their ability to help. How will they support you while still going to work or helping with other familial duties? What are their limitations? How can they let you know when they, too, are getting tired and run-down?
