Had I Known

by Joan Lunden

  But then I started the battle, the fierce fight against the cancer cells, and the warrior in me hoped I had what it would take to win—that when all of my treatments were over (the chemo, the surgery, and the radiation), my disease would be gone for good, never to return.

  I remember reading a social media message one day that said, “Hang in there. Before you know it, you will be looking at this cancer through the rearview mirror.” It was an incredibly uplifting thought. I knew or at least hoped that someday I would be able to look at my cancer that way—through my rearview mirror. And in time I was certain I’d get there.

  The overwhelming question was how much time did I need to actually “survive” before I could begin to feel like I’d truly beaten it?

  Don’t get me wrong. There were days when I doubted my chances, but I also didn’t want to set myself up as some model “super-survivor” who never looked back, never worried, and somehow faced each day as an invincible trouper.

  Was that even possible?

  When I was growing up, my mom taught me three great life lessons I’ve carried with me:

  First—always be positive.

  Second—expect great things out of life.

  And third—whenever things get tough, always expect a better tomorrow. Mom was not born to a rich family and lived an extremely humble life. When she finally found love and security with my father, it was dramatically ripped away from her when he died. If anyone had a reason for being somewhat leery of life, she did. And yet her positive attitude was so effusive, it was downright contagious. So believe me, I learned from the best.

  Over the course of my treatment, I read countless tweets and Facebook messages from people who encouraged me daily to “stay positive.” And not give up the fight. They were important in my recovery because I felt a bond and connection with those who had walked the path before me, those who knew where I was headed and could hold my hand and lead me through the darkest days with their words, observations, and experiences. Out of everything I received, the overwhelmingly consistent message was how important maintaining a positive attitude is when you are battling a disease. But only those who have gone through the battle against cancer really know how hard and scary it is! You just have to remember not to let a bad day make you feel like you have a bad life.

  However, cancer is a powerful and daunting opponent.

  Cancer looks you in the eye like a big angry bull with huge pointy horns, ferociously breathing as though he’s ready to attack and head-butt you into some other stratosphere at any moment.

  You would think that the further along I got in my cancer treatments, the more chemo I’d sent pulsing through my body, and the more radiation I allowed into my system, the more relieved I would be, right?

  As if I stared that damn bull down, and at some point he went running off in the other direction and I won.

  Ironically, for many, including me, the closer to the end of our treatments we get, the more worried we become about whether we truly beat the cancer.

  And when you are completely finished with all of your treatments and everyone is cheering you, “You’re done, you beat it, and it’s all over!,” you want to join them in that joy, believe that it’s all over, but it takes a while to embrace that.

  And that’s okay.

  Every one of us who has battled cancer lives with the knowledge that it could return. Carly Simon wrote an entire album about having the chemo blues, the depression that followed her breast cancer treatment. I can tell you that as hard as you try to be reasonable, it is difficult not to experience some anxiety and to think: Did we really get it all, or am I waiting for the other shoe to drop?

  Of course, being the research junkie that I am, I googled “What is the effect of worry and stress on cancer growth?” Research indicates that stress can alter the immune system function. In turn, immune system function can alter tumor growth and response. Obviously, worrying wasn’t going to do me any good!

  The key to being a survivor is not letting that fear overwhelm you. You must find the strength and courage within yourself to let go of the fear and enjoy life; otherwise, the monumental battle you just fought to overcome your cancer will have been for nothing.

  I had to remember not to allow myself to waste precious time.

  Time fearing a recurrence, because that may not happen.

  Time with loved ones, because they matter more to me today than ever.

  Time doing things I’m passionate about, because what’s the point of doing things you don’t love?

  Time taking care of myself, because my health matters.

  Time focused on things I can do something about and not on things I can’t change.

  Time enjoying the moments because they pass so quickly.

  Time acting on things NOW, because tomorrow might be too late.

  Time . . . it is so very precious.

  In terms of my entire life, this nine-month battle against breast cancer has been a blip on the radar screen for me. As daunting as my fight has been, it did not break me. Not even close. I am grateful to still have that mind-set. Being able to see my disease from that point of view helped me change my focus, as if it were a lens on a camera that helped me go from a close-up view—which we all know makes things look proportionately bigger—to a panoramic view, which ultimately helps put everything into greater perspective.

  When faced with such a threat against your mere existence, you do begin to appreciate life so much more. You look at each and every day through that new lens. As I looked out my window from my lakeside home last summer in Maine, I saw the sun glistening off the lake. It was a more gorgeous sight than I remembered it being in past years. In fact, I seemed to appreciate every detail of that view more, just as I do my life these days.

  If there is one, that is the silver lining of cancer.

  It certainly makes you more appreciative of life.

  A woman on Facebook wrote to me about this epiphany: A wise friend of mine explained it all like being given a present wrapped in barbed wire!

  How true!

  Joyfully, breast cancer wasn’t a death sentence for me. In a bigger way, it was a a wake-up call—one that taught me some very valuable life lessons. I never could have dreamed I’d learn so much from this challenge, but like they say, that which does not kill you makes you stronger.

  In thinking about my future, I couldn’t help but wonder if, after having breast cancer and questioning my very existence, I would find myself rushing to do the things on my so-called bucket list before it was too late.

  In retrospect, had I known that breast cancer was going to have such a powerful and positive impact on me, would I have made some of these changes earlier in my life so I could have enjoyed the benefits of the outcome sooner?

  That’s the million-dollar question—one I suppose I’ll never know the answer to.

  But here’s what I do know.

  While I desperately want to put this ordeal behind me and live life as it was BBC—no, not the British Broadcasting Company, life before breast cancer, life when I didn’t worry about whether I would be around tomorrow—I don’t think that will ever be possible again.

  And in many ways, I am appreciative for that gift.

  We can’t go back and change what was.

  If we’re given the chance, all any of us can do is move forward with our lives and hope to do better, be better, love better, and live better.

  These are choices that are within our reach.

  I’m not going to take that for granted.

  So, as I move forward, I don’t want to go about my life as if nothing happened.

  The reality is, something did.

  Something seismic.

  As a result, there has been a tremendous shift in how I see, feel, touch, taste, and take in . . . well . . . just about everything.

  Yeah, a second chance at life will do that to you.

  With that in mind, my old bucket list seemed a bit insignificant. It was lacking purpose,
meaning, and direction. So I thought it might be a good idea to make a new bucket list.

  The first few things I wrote down were:

  1.Being NED (no evidence of disease).

  2.Continuing to have clean nodes.

  3.Grow a full head of hair.

  4.Healthy blood counts.

  5.Clear ultrasounds.

  6.Eat clean, healthy foods—hopefully in exotic faraway places as often as possible!

  7.Write more books, sharing my journey and what I’ve learned along the way.

  8.Inspire. I can’t believe I once had a real fear of public speaking. Now I live for it.

  9.Hike more. I don’t really care where. Just as long as I’m forging my way through nature.

  10.See my older daughters create their families and live out their lives happy and healthy.

  11.See my younger kids graduate college, marry, and have babies of their own—in that order.

  12.Play better tennis and maybe learn to golf when I’m a senior—in twenty years or so.

  13.Make an impactful difference in the life of others.

  14.Save lives—I know, I’m still a wannabe doctor—but curiously, I might.

  15.Grow old . . . with Jeff.

  16.Nothing—I’d like to be comfortable just doing nothing at some point in my future.

  What’s on your bucket list?

  I think there’s great value in creating a bucket list, one that will take a long—long—time to complete. One that will inspire you and give you purpose and give you momentum and hope.

  One that spans a lifetime.

  We’ve all gone through something in life that has changed us in some significant way, and as a result, we will never go back to the person we once were.

  Life takes each of us down different paths, and sometimes those paths actually change you as a person.

  As 2014 came to a close, I received an email from Robin Roberts, who was checking in on me and wishing me a happy holiday season. Normally, I send out holiday cards to my family, friends, and colleagues that are clever and campy pictorial overviews of the year. The card captures moments of each family member—and in 2014, all twelve of us, the kids, sons-in-law, and baby Parker Leigh, together as a family. It was no easy feat getting my cards out like I usually do, because I was feeling so lousy in early December. Somehow we managed, and despite the wide swing of the pendulum in 2014, when I looked at our card, I had no doubt that there was indeed far more to celebrate than not.

  One of the greatest moments of joy I received to close out the year was the blessed news that my oldest, Jamie, and her husband, George, were expecting their first child. Getting pregnant hadn’t been an easy road for them, so when they shared that they were indeed expecting, I was thrilled beyond words. My heart was once again full of deep bliss and, yes, peace. You see, despite all of the trials and tribulations I had gone through, life does go on. My family—my children—were all thriving. They were blossoming and doing the things that filled their emotional buckets, creating families of their own that would endure and carry on the legacy I had instilled in each of them. This thought alone gave me satisfaction, fulfillment, and total contentment that I know any mother would surely understand.

  So when I wrote back to Robin, I was feeling especially elated and full of gratitude. I was also a bit wistful and more reflective than I was in our usual correspondence. While I couldn’t share the most exciting news about Jamie and George with her—it was too soon to go public—I wanted her to know the other ways this journey had touched my heart, because I knew if anyone would understand the connection and change I felt, it would be Robin.

  I shared with her that the most wonderful and surprising part of getting cancer was that it had reunited me with so many Americans who had spent mornings with me for decades and now, through my public cancer journey, have reconnected with me through social media.

  This reconnection has been another surprising silver lining for me. One would not set out on this journey expecting it to bring happiness, but for me, it did. It has been an unexpected blessing to touch so many women’s lives. I’ve received messages of thanks and gratitude from countless women telling me that they had never done a self-exam or hadn’t had a mammogram in years, and because of my speaking out, they got checked. Because of that, many actually discovered they had cancer, but we know detection and treatment will save their lives. For that reason alone, 2014 was a great year!

  In February 2015, I was asked to be the keynote speaker at the largest and longest-running breast cancer conference in the United States—the Miami Breast Cancer Conference—attended by well over a thousand medical specialists who diagnose and treat women with breast cancer. The attendees are primarily breast cancer surgeons, oncologists, radiation oncologists, radiologists, and breast cancer support team members. The physicians hail from all fifty states, Canada, Central and South America, and Western Europe. The meeting has a significant impact on practice standards, dissemination of information, and research directions for breast cancer in the United States. My invitation to speak came directly from Dr. Patrick Borgen, the chairman of the conference, who said he wanted me to talk about the “all-important piece of the puzzle” for doctors: the patient’s perspective.

  I was not only honored by the invitation, I was also a bit taken aback by the distinction and the opportunity to address such a prestigious group of professionals. This would be the first time I’d address a large group of important medical professionals on what it was like to go through treatment from a patient’s experience—and to share my personal journey in a public forum. I felt I had a rare opportunity to enlighten these medical professionals from an “inside” point of view. As both a journalist and a patient, I was pretty sure my insights would be thought-provoking; however, my real goal was to be the voice for the thousands of other women just like me.

  Preparing for the speech was extremely nerve-wracking. I was actually scared about what they might think. I had been given a rare chance to address an important audience on a topic I had become passionate about. I needed to thoughtfully construct my message so they really heard what I had to say.

  And boy, did I have some things to share.

  I wanted the doctors in that room to understand that when women across the country first heard my story—that I initially had a clean mammogram, and ten minutes later, an ultrasound found an aggressive cancer tumor—they were stunned. Many of those women had no idea that vital information wasn’t being passed on to them, information that could risk their health. I felt it was critical that women be given every available resource to make the best health care decision. When women are informed that they have dense tissue, only then can they make potentially lifesaving choices about their care, in consultation with their doctors.

  Frankly, it was just pure dumb luck that I interviewed Dr. Susan Love and got that ultrasound in the first place. Had I known about dense breasts, and that my mammograms wouldn’t show a tumor if I had one, then I would have treated my breast screenings with a very different perspective all those years. Had I known that there was lifesaving information being divulged by my mammograms and not being passed on to me, the patient, I would have been outraged much sooner and probably would have been out there blazing a trail to have that fixed for women everywhere. Then again, maybe you can only effect that kind of change if you’ve been diagnosed with the disease yourself.

  But now I belong to that sorority. I can stand up and do everything I can to be heard and to make a difference. And the Miami Breast Cancer Conference was my first significant opportunity to prove I could do that.

  The American Medical Association’s code of medical ethics states: “Withholding medical information from patients without their knowledge or consent is ethically unacceptable. The assessment of the potential benefits and harms of a specific test or treatment can be made rationally if the information given to the patient is complete, accurate, and true.”

  We know early detection is important to surviving brea
st cancer. However, despite the fact that 40 percent of women have dense tissue, survey data from Harris Interactive poll a few years ago indicates that 95 percent of women do not know their breast density—which can change over the course of their life—or that it matters.

  It does matter.

  Had I known, it certainly would have mattered to me.

  Not long ago, I had an opportunity to speak with Dr. Nancy Cappello, whose late-stage cancer was found a few months after a clean mammogram; fortunately, she is a survivor and a fighter. She is the founder and director of Are You Dense?

  As a result of the incredible passion and advocacy of women like Nancy, we now have twenty-two states with legislation requiring doctors to inform their patients that their breasts are dense and that the mammogram may not be a sufficient screening tool. I look forward to working hard to help her efforts to bring all states on board.

  I am also working with Senator Dianne Feinstein on legislation to make a federal standard that every radiology lab in every state needs to tell every affected woman in real, simple language that she has dense breasts and that she may require further testing.

  So there is progress being made in the responsible reporting of dense breasts and also in women’s awareness of their breast health.

  During the writing of this book, my coauthor went for her annual mammogram. For the first time ever, she saw a boldly printed sign in the waiting area of her doctor’s office:

  WHEN YOUR MAMMOGRAPHY IS PERFORMED, ASIDE FROM CHECKING FOR ANY CHANGES OR ABNORMALITIES, WE ARE CHECKING HOW DENSE YOUR BREAST TISSUE IS. THIS IS A NYS MANDATE. IF YOU ARE 75% DENSE, A SCREENING ULTRASOUND WILL BE RECOMMENDED. PLEASE FEEL FREE TO ASK ANY QUESTIONS.

  Coincidence?

  I’ve never been a big believer in those.

  As they were placing her breast on the metal plate, she mentioned that she was curious to know if she had dense breasts. With that, she heard in an exasperated tone: “Oh, sure, like every other woman who comes in here now, ever since that Joan Lunden was on the cover of People magazine.”

  Apparently, this was a request she was getting a lot!