The Complex Role of Loved One and Caregiver—Marilu Henner’s Journey of Finding Lost Love and Helping Defeat Cancer

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By Christopher Cussat

You may know five-time Golden Globe nominated actress, Marilu Henner, for the diverse and memorable characters she has played on stage, television, and in film over the past four decades.

Whether she is starring as Elaine O’Connor Nardo in Taxi, appearing as Aida Teagarden from Hallmark Movies & Mysteries’ Aurora Teagarden Mystery series, or performing live on stage in her recent return to Broadway as Mitch’s Mom in Gettin’ the Band Back Together, Henner always injects vibrant passion and energy into the roles she plays. But perhaps the most personally important role she has ever played in her lifetime was that of caregiver to her husband during his battle with cancer.

Like sun and moon, Henner and her husband, Michael Brown, orbited around each other for many years before finally coming together. This trend of almost connecting began when Brown was her freshman roommate’s boyfriend as the two first became acquainted at the University of Chicago.

She remembers being drawn to him early on, “Although I felt a jump the moment I saw him, since my roommate met him first, I would never break the ‘girlfriend code’ and I didn’t dare twinkle in his direction.” But they all eventually became really good friends and often would even go on double dates during that time.

When Brown and Henner’s roommate broke up during their second year of college, Henner continued to keep her distance from him out of respect for her friend, but they still would share occasional waves and passing glances around campus—perhaps a subtle portent of their future relationship.

But Henner would soon lose touch with Brown as her budding acting career started gaining continuous traction and her journey to stardom began. She recalls, “We lost contact when I became a professional actress—for a while, I was literally a college student in the morning and a professional actress in the afternoon. So I left school and my life in Chicago behind me to live in New York City for a while to perform on Broadway, and then I eventually moved to Los Angeles and started doing Taxi and other projects.”

Yet the fates seemed determined to keep these two connected—even during somewhat inappropriate moments! In an almost unbelievable irony, Henner ran into Brown while she was at a courthouse in New Orleans getting married to her first (now ex) husband. “While sitting there and waiting for that marriage license, I looked up for a split second and saw Michael cross the doorway!” Even though she had not seen him in so many years, Henner still ran out to say hello. “I found out he was married at the time with two kids—and there I was getting married right then—and as we said goodbye to each other all I could think was, ‘How come I’m not marrying a guy like that?'”

Time passes again, and Henner has two beautiful sons with her second husband of sixteen years. Then, fifteen years ago, the perpetual gravitational pull of these two finally cause them to joyously collide when Brown called her out of the blue. “Within a month we’re saying ‘I love you’ and that we’re going to spend the rest of our lives together,” she adds.

That was in March 2003, but after finally getting together in apparently a relationship that was always meant to be, it almost immediately seemed like their time together was going to be cut short when two months later, Brown was diagnosed with Stage II Bladder Cancer as well as a spot that turned out to be lung cancer. After learning that Brown had two primary cancer sites, Henner recalls telling him, “I said failure is not an option and I’m nursing you back to health—we’re going to figure this out!”

Henner immediately took a proactive position to help Brown as his partner, caregiver, and healthcare advocate. Together they opted for Brown receiving non-traditional immunotherapy treatment instead of chemotherapy, radiation, and bladder removal. They also co-wrote a book about this journey entitled, Changing Normal: How I Helped My Husband Beat Cancer, which discusses caregiving, how much the human body wants to heal, and how immunotherapy is the wave of the future.

Genentech, a leading biotechnology company that discovers, develops, manufactures, and commercializes medicines to treat patients with serious or life-threatening medical conditions, is the maker of the cancer immunotherapy medicine, Tecentriq. Genentech recently approached Henner about partnering up with them, especially related to caregiving. As part of that project, she also collaborated with the Lung Cancer Alliance to create this TIP SHEET as a resource to help caregivers and their loved ones through the lung cancer journey. “I jumped at the chance because I feel like people don’t often talk about that aspect of helping somebody—Genentech has all of these surveys and statistics which focus on the caregiver, and there is also great information available on lungcanceralliance.org—so I wanted to get all of that information out there.”

Dr. Roy Herbst, M.D., Ph.D., Professor of Medicine; Chief of Medical Oncology, Yale Cancer Center and Smilow Cancer Hospital, believes that having a strong personal support system is extremely important to cancer treatment. “Hearing the words ‘you have cancer’ can certainly be a frightening experience, so it’s critical that patients have a strong support system when they are diagnosed and throughout their cancer journey.” He explains that caregivers can help patients cope not only with emotional stress, but also to help research and decide on the best treatment options for their loved one with their doctor. “For example, lung cancer treatment options have changed considerably in recent years, particularly due to immunotherapy, which involves harnessing a body’s own immune system to fight cancer. Caregivers can help patients learn about different treatment options for lung cancer, including Tecentriq, which is approved by the U.S. Food and Drug Administration (FDA) for people with a type of advanced non-small cell lung cancer.”

When asked what she thinks is the most important tip for caregivers, Henner says it depends on the person. “I mean some people need to be told that they have to be a good listener and kind of ride the wave with the patient—and some people can do that naturally—but I think probably the most important thing is being mindful of the care that you as a caregiver might need too.” She explains how important it is to find a balance between taking care of yourself while you are taking care of somebody else. “I’m somebody who’s very active and I move a lot, in fact my nickname has been ‘Perpetual Motion’ since I was a little girl (and that’s also the name of my company)—so I always found ways to multitask my own health during any of Michael’s procedures.”

For example, Henner says that anytime she took Brown to the hospital or to the doctor’s office she would always wear super comfortable clothes so she could walk around the neighborhood, take the stairs for exercise, and meet up with friends, etc. while he was at long appointments. “You have to learn how to find what I call the ‘juice’ in your day—what is going to make you feel good and what are the little things that are going to make you feel better to relieve the stress of taking care of someone else—because it’s very stressful,” she adds. Understanding this stress that they often face, Dr. Herbst also tries to check in on the overall health and wellbeing of primary caregivers. “I know that can be a tough role and it’s so important that they take care of themselves (by eating right, getting exercise, and even finding some time to recharge) throughout this process so they can be there for their loved one.” 

Dr. Herbst believes that caregivers play an important role in helping patients through the cancer journey by promoting the overall healing and recovery process. “At diagnosis, caregivers often help patients deal with the emotional stress of finding out they have cancer, and then make levelheaded decisions on next steps.” He adds that caregivers can help their loved one research the best possible treatment options, including clinical trials, based on their type of cancer. “They should also have an open conversation to weigh potential side effects of each treatment so they can make an informed decision with their doctor about which medicine is right for them. Additionally, caregivers can help patients heal throughout the journey, stay positive, and adjust to life after treatment during recovery.”

Henner also emphasizes the importance of caregivers taking copious notes, which is somewhat surprising from an actress whose profession relies on memorization as well as her being one of only twelve people documented with Highly Superior Autobiographical Memory (HSAM). “I’m a real note taker anyway, and I feel like even though I have an unusual memory, I wanted to make sure that all the information was right there in black and white so that Michael could see everything that the doctor was saying.” She adds that sometimes patients can get a bit “glazed over” during the whole process and may not really be fully listening. “They’re going to have their own distractions of thought—maybe thinking about their life and how this news is going to land with other people, family, etc.”

Since caregivers usually accompany their loved ones to appointments, Dr. Herbst often sees this and acknowledges how they help his patients by jotting down notes, recording sessions, and asking a number of follow-up questions. “Caregivers can also help keep the patient honest, like reminding them to tell me about all of their symptoms. Good communication with the healthcare team will help you better understand your disease and options in order to make the decisions that are best for you.”

Directly related to this, Henner states the need for caregivers to be educated about their loved one’s affliction. “Don’t just go on the websites that have one page beyond the front page of any disease that you are researching—I think it’s really important to tool around and get as much data as you possibly can under your belt so you can start to cross-connect the information that you’re learning in order to see what works for you.” She adds it is especially important to gather enough information in your brain so that you can figure out your path, because everybody’s path might be a little bit different.

She also believes that being an educated and positive caregiver for a spouse or loved one transcends economic status and healthcare access. “I don’t care how much money you have or how good your healthcare is, you still need to have a strong support system and someone who’s really got your interests at heart—it’s a whole combination of your will to live and the kind of loving relationships that you have around you.”

Henner always tells people that when dealing with a loved one’s serious illness, “The worst day is the first day and the first day is the worst day—then after that, it’s putting one foot in front of the other—you just need to figure out what it is that you’re going to do, and you accomplish this by arming yourself with knowledge.” Not surprisingly, this actress who has spent much of her career performing in comedies, believes in the power of laughter, and also patience. “You have to use a sense of humor and you have to understand that it’s not a death sentence. What you have to do is kind of ride this wave with the person that you’re taking care of and know that they might have moods, and you’re going to have your moods too because we’re people—but it’s not like a two-hour movie with a bad ending you know, it’s a process and sometimes it’s three steps forward and two steps back.”

Dr. Herbst adds that caregivers should never have to go through the cancer journey alone. “It can help to talk to other people who have gone through similar situations, whether it be family, friends, or a local advocacy group like the Lung Cancer Alliance.” The Lung Cancer Alliance’s website provides access to excellent information for caregivers (like Henner’s TIP SHEET) that may be helpful throughout the journey.

Henner has always been open and passionate about health, and she is grateful that her acting career has provided such a terrific platform to share her personal story. “Being in the public eye certainly puts me in a unique position to help spread awareness, and I’ve really appreciated the partnership with Genentech as an opportunity to talk more about being a caregiver. It’s also incredibly rewarding to hear from people who are going through a similar situation and have taken some of our tips.”

If there can be any positive outcome of cancer, Henner and Brown seem to have found it in their relationship. In fact, Henner often says that she and Brown beat his cancer by loving it to death. “It strengthened us because cancer was an early part of our relationship—we became so connected and it made us bond so quickly because we were on this timeline to save his life. As a result, it really made everything very special to us—but we always felt like we were going to get through this and love each other every step of the way.”

Like most great love stories, theirs is well on the way to having a completely happy ending as Brown is now nearly fifteen years in remission. Although it took them so many years to finally break orbit and become a couple, it appears that Henner and Brown were supposed to find one another and be together when they needed each other the most. “It’s like we had to go and become the people we were meant to be and then get together. During this journey, I can’t tell you how many people asked me if I really wanted to take all this on—but I’m so happy that he got to me in time and we were able to save his life together.” This beautiful finale may be better than any script that could have been written for them. As Henner concludes, “I didn’t wait for the love of my life to show up and then lose him.”

You can read more of Christopher’s work at cussat.com.

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