What Breast Cancer Taught Me

One year ago, I was in a hotel room in New York, when I felt the lump on my breast, a hard, protruding growth that was impossible to ignore. Years of stress and anxiety, lack of sleep and neglected check-ups had given a cancer tumor the perfect environment in which to grow.

At that moment, I joined the one in eight women who will get breast cancer; fortunately, I was among the lucky ones who caught it before it could metastasize. After eight rounds of “excessive chemotherapy”, breast-preserving surgery, the removal of nine lymph nodes under my arm, and 25 days of radiation, the cancer is gone. Even though it is no longer actively living inside me, the fact that it could have killed me and that it could come back, the diagnosis has changed me forever.

This is what I’ve learned:

1. Cancer is a humbling experience. When I was diagnosed, I was at the top of my career working on the transition team as a senior advisor to the new Secretary General of the United Nations. My first book was about to be published. I had a wonderful family life and friends all over the world whom I met during my travels to foreign countries and refugee camps. At 52, I was physically fit and outwardly radiant. I was a runner and a healthy eater, a public speaker and media personality. Because of my work for the UN Refugee Agency, the only fears of death I had were of being caught in an ambush or kidnapped in a warzone. The idea that a deadly disease would attack me from within did not cross my mind once. With this diagnosis, the trajectory of my life suddenly veered off course. I went from a director to a patient; from unstoppable to vulnerable. Cancer, I realized, is the great equalizer: any sense of invincibility is immediately lost.

2. Ignoring the signals your body is giving you may come back to haunt you. After I was diagnosed, I went to see a holistic doctor where I live in Vienna, Austria, and bragged to her about how rarely I had ever been sick. I confessed I also seldom went for medical checks, including for my annual mammogram that was six months overdue. She smiled, and said, “you are just the kind of patient of mine who gets cancer.” That statement certainly gave me pause. She explained that patients who came to her often with this or that ailment or concern were listening to their bodies, taking time off to rest and getting themselves preemptively checked. Unlike me, they were under no illusion they were exempted from disease.

I suddenly recognized that the life I was living was not as healthy as I pretended it to be. Although my oncologists told me the onset of my cancer was ‘bad luck’, I am convinced that other factors may have contributed to it. Even though there is no ironclad medical proof that too much stress linked to cancer, there is much evidence that it increases susceptibility to all kinds of disease.

For the past two decades, I had been working full time in a senior management position which involved frequent global travel and lots of overtime, commuting between two European countries, writing a book during nights and weekends and unsuccessfully trying to carve out enough quality time for my husband and two teenaged children.

The year before my diagnosis I developed a painful condition called ‘frozen shoulder’ which threw off my equilibrium for months. For the first time in my life, I wasn’t sleeping well, and I was waking up in cold sweats, which I attributed to the onset of menopause. Despite these signals, I didn’t go to the doctor, skipped physiotherapy and didn’t take all my vacation time to rest. My body was crying out for care, and I was ignoring it.

Cancer stops you in your tracks: A couple of weeks after my diagnosis, I took the train to Boston for a second opinion at the renowned Dana Farber Cancer Institute. It was the day after the U.S. election. The mood was hushed. I was feeling depleted and detached from my new persona as a powerless patient. A couple of days before, I had been wearing a nice suit, having lunch with the current and future UN Secretary Generals and talking about war and peace and the future of the world. I had been running meetings, having coffees with diplomats and doing media interviews on conflicts and refugees.

Sitting with UN Secretary-General designate, António Guterres outside the UN General Assembly Hall in October just before he was to be sworn in as Secretary General and one week before my diagnosis.

Now instead I was meeting with a reputed oncologist who would tell me if I would live or die. You will survive, he told me, if you get eight rounds of chemotherapy, followed by surgery, then radiotherapy and then five to ten years of ‘hormone therapy.’ But with this kind of chemo, he added flatly, I would quickly go bald, be thrown into menopause, live most days like I was having my worst hangover, get very dry skin, watch my nails turn brown and feel very, very tired. I realized that life as I had been conducting it would have to change dramatically. I would have to change my persona from healthy person to someone in a struggle with cancer. Work could no longer be my top priority. Suddenly I was faced with the prospect of prolonged illness and even death, and nothing mattered more to me than my husband, my children, my family and my close friends.

1. While cancer doctors will use all the best methods in modern science to kill your tumor and save your life, taking care of the rest of you is your responsibility. When I handed over the job of killing my tumor to the doctors, I realized it was my responsibility to nurture the rest of me. Chemotherapy kills cancer cells but attacks healthy cells too and it is highly toxic. I learned as much as I could about taking the right kind of supplements that would boost my immune system, reduce inflammation, protect my skin and nails and restore the vitamins the chemo was depleting. Every morsel of my food was fresh and organic. I went to acupuncture to help manage the pain in my joints, reduce my nausea and induce sleep. I began meditating daily using the Headspace app that has a special series for cancer patients in its library which eased my anxiety and stopped my mind from racing ahead. I made chemotherapy my friend, and visualized it encircling my tumor and suffocating it. I embraced the studies that showed exercise can enhance the chemotherapy treatment and prevent recurrence while boosting your mood and preventing weight gain. I exercised every day, running or walking, even when my legs felt like lead, my energy was depleted and my stomach queasy.

Because my Stage 3, fast-growing tumor was more than three centimeters in size and the doctors wanted to try to preserve my breast, I was given chemotherapy before surgery to try to shrink it. They still thought the likelihood I would need a mastectomy was high. But at the end of four months and eight rounds of chemo, the tumor had completely disappeared. The doctors were astonished. Did all the exercise, vitamins and meditation contribute to this remarkable outcome? I’ll never know for certain but I believe they did and I’m glad I took these steps to take care of myself.

5. You don’t have to lose your hair. Despite my oncologists warning me that with this type and amount of chemotherapy, I would definitely go bald, I kept my hair. Most women with cancer will tell you that baldness is the side effect they dread most (and I was one of them). We have just been told we may or will lose a breast, and now we will lose the other feature that defines our femininity — our hair. But the Internet is full of testimonials suggesting that using cold caps — a method of freezing the scalp to -35 degrees c. before, during and after the chemo infusion — stops it from reaching the fast-dividing hair cells and thus prevents hair loss. So, after extensive research and defying the many naysayers, I ordered Penguin Cold Caps. My husband became a master of the ceremony — freezing the caps in dry ice to sub-zero temperatures and applying a new one every 25 minutes for eight hours during chemotherapy. Aside from one supportive nurse, the hospital staff was skeptical. The process was cumbersome and the caps were excruciatingly cold at first, until my head went numb. But it was no doubt effective. At the end of my eight rounds of chemo, I still had virtually all of my hair. Only I could notice some shedding and thinning. To the outside world, I looked pretty much the same — just drawn from losing weight and tired around my eyes. Having hair gave me confidence during my treatment to continue working, launch my book at public events and appear on television and feel like I was in charge of something. My oncologists admitted to me that I proved them wrong and I have since become a resource for other women wanting to preserve their hair.

Getting my ‘red devil’ 2nd of eight chemotherapy treatments while preserving my hair with the cold cap system.

6. I am lucky: I have heard time and time again from refugees that the worst aspect of their experience is losing control of their lives. I now understood so clearly what they meant. After my cancer diagnosis, I suddenly felt I was no longer the director of my own life. I had to give over the reigns to the medical establishment, or to the cancer that would kill me. I remembered a Syrian refugee with breast cancer I met in Lebanon. She lived in a muddy field and in a tent getting by on the little assistance my organization, UNHCR, was able to provide. Even though her country was a warzone and half the hospitals were destroyed, there was still affordable cancer care in Damascus. So, to save her life and to survive for her children, she risked the dangerous journey every few weeks across the border and back to get a chemotherapy infusion. I often thought of her as I took the short bus ride to a cancer hospital in Vienna and wished she too could have the same access. Here, with the best of modern Western medicine, my cancer faced a formidable foe, which made me fortunate.

7. Having cancer doesn’t mean you’ll lose control of your life: One way I dealt with the emotional shock of my diagnosis was to read every book and article I could get my hands on about my condition and ways to combat it. I visited specialized websites and read the wisdom and worry and fears from patients on breast cancer forums. It felt like I was learning a foreign language and cramming for a major test. I arrived at oncologist appointments with lists of questions. Unable to accept a status as a full-time patient, I announced my plan to continue working remotely from Vienna where I was to be treated and to travel back to New York for work between chemo sessions. Armed with knowledge and resolve and the ability to continue working, I felt, at times, stronger than the cancer cells that were trying to destroy me.

8. Cancer will show you who your true friends are and bring new friends into your life: I will never forget what my then-boss said to me when I told him about my diagnosis. “The only thing that matters is people,” he said, as he assured me my job would always be there but family and friends were what I most needed now. I will also never forget the outpouring of support I received. There were some people who disappointed me, but I recognized their fear and forgave them. I learned, for instance, that one friend who stayed away had lost her sister to cancer when she was just 20. She simply couldn’t handle the memory.

My family stood by me for every hospital visit, comforted me during every fit of anguish and cared for me when I was feeling low. I decided I would be open with my cancer diagnosis and soon I lost the veneer of the superwoman who had it all. At first it was frightening to feel so weak and exposed. But then my friends traveled to meet me, wrote e-mails I wanted to print and frame, sent care packages, delivered nourishing meals, called every week to check on me and offered to help with virtually everything. People I barely knew gave me hugs and offered their own cancer stories or the fears that they had kept quiet. I quickly saw that exposing my vulnerability opened people’s hearts and also lightened my mood and gave me strength. These bonds have endured and have profoundly enriched my life.

9. Cancer will help you focus on what is important and prioritize commitments: I now take a pill every day that suppresses the estrogen my kind of cancer likes to feed on, in order to prevent any rogue leftover cells from having a chance at a comeback. But preventive medicine also involves saying no. I have started asking this question before I accept any new assignment, invitation or idea: “What for?” If I can’t come up with a satisfactory answer, or if the sacrifice is greater than the impact, I say ‘no.’ Looking back, I realize how caught up I was in a hamster wheel of commitments that were driven by others. I am now trying to apply strict criteria to the speaking engagements I will accept, the articles I will agree to write, the social invitations I say yes to, in order to conserve the energy my body needs to take care of itself. I find so much more pleasure in things I previously rushed past while my mind was racing forward — holding hands, cooking for others, asking questions and witnessing beauty in art and nature.

When I was in the hospital, I often shared a room with another cancer patient. Three of those women were there because their cancer had come back and spread to other parts of their bodies. One was dying. They showed me that life is fragile and our time is precious. I live with the joy that I am cured for now but also with the fear that I have a disease that can return. I have been given a cautionary extension, and now I will try to value my time as if it were gold.

Photo taken during a TV appearance on the German TV talk show, Maybritt Illner a few days before my final chemotherapy treatment in March, 2017.
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