Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.

Susan F

In July, I got married. In the middle of a period of incredible sadness, suddenly I was taking part in a hopeful experience, a celebration of a loving future with my wonderful husband. It was an entirely new world for me. Before getting married, it was just me in the world, and I had gotten good at soldiering through my diagnosis. But now I was married, and I had someone else to worry about. Suddenly, I found myself worrying about the future of my illness. How long before the suffering of cancer takes over my life? What if I become disabled and my poor husband has to care for me? Will there be enough time for my husband and me to enjoy a normal married life?

At this point, there is little reason for me to worry. I am lucky. The cancer is responsive to treatment, so I am able to work and enjoy life with my husband. I have a shot at several years before the cancer begins to take bits of my life away. We can have a normal married life. But the one sure way for me to not enjoy married life is to become engulfed by pain and suffering that is not yet here. Even if our marriage were to only last a short time, to spend that time consumed by fear and anxiety would be a true sin. 

I am very active on social media, using Twitter to stay abreast of the latest in breast cancer research. Every announcement of a new drug is a balloon on which my hope can soar. The downside of social media, though, is that I also am privy to other people's cancer stories. I see the woman whose cancer has spread to her brain and is receiving chemo through a port installed in her skull. I read the announcements of women and men being placed in hospice. And then, shortly thereafter, I read the announcements of their death. It is difficult for me to turn away from others’ suffering. I was raised by a kind mother who encouraged my already kind heart. But watching a constant stream of pain via social media has only resulted in my becoming more consumed by crippling fears.

Thankfully, I have found life-saving support through 

, an incredible organization that helps Jewish women through ovarian and breast cancer. My counselor, Shera Dubitsky, talks to me about my fears, helps me to focus on just today, and reminds me that everyone’s cancer story is different and we all respond to different treatments in different ways. But most importantly at this point, she gives me permission to take a break from the cancer community when I am overwhelmed. And I am overwhelmed.

So for a while, I’ve begun to back away. I’ve hidden certain things from my view on social media, and I’ve stopped checking certain groups on Facebook. I needed to do this in order to keep what is left of my hope alive. I feel a sense of guilt backing away, but I also know that adding to my own suffering doesn’t help at all. I can say a prayer and take the break I need. As Dr. Jerome Groopman puts it so well in his book 

The Anatomy of Hope: How People Prevail in the Face of Illness

 “Each disease is uncertain in its outcome, and within that uncertainty, we find real hope, because a tumor has not always read the textbook, and a treatment can have an unexpectedly dramatic impact. This is the great paradox of true hope: Because nothing is absolutely determined, there is not only reason to fear but also reason to hope. And so we must find ways to bridle fear and give greater rein to hope.” 

Right now I need to hold on to that hopeful uncertainty and give myself the break from cancer I need. It’s the only way I can focus on living the life I have in front of me right now. I’m sure my husband will appreciate it.

Articles

On taking a mental health break from cancer in order to rekindle a sense of hope.

Tired of Cancer

I got married this weekend. It was a sweet ceremony, in a small church, the guests gathered at tables surrounding the ceremony space. My husband's best friend said a few words during the ceremony, describing the growth of our love. It was a heartfelt speech, but I didn't realize until after the wedding, that he only knew my husband, not me. So he couldn't tell the story of how I came to love Jeff or my feelings about the day.

My diagnosis with cancer came in the middle of an already long streak of sadness. Three years prior to being diagnosed, my mother suffered a hemorrhagic stroke. The stroke left her brain destroyed, but luckily her advance directive was clear. As per her wishes, we took on the task of helping her die. This is something I never want to do again, but if someone I loved we're in a similar circumstance, I would help again. It was a painful, loving thing to do. My mother and I were very close, so after she died, I was left with the job of grieving her loss.

But apparently I was not done with loss. My older sister, like my mother, suffered from binge eating disorder, putting her at an incredibly unhealthy weight, which she worked hard to deny so that she could continue to partake in her food addiction. Six months after my mother’s death, my sister almost died due to that addiction. We all hoped that this close call would be the bottom she so desperately needed to hit in order to begin facing her addiction and make a start towards recovery. But that was not the path Melissa chose. She continued to binge eat, and in February 2010 Melissa passed away at age 51, leaving me to grieve yet another significant loss. And then, in January 2012, my own health became a serious issue, doctors discovering that metastatic breast cancer had covered my entire liver. I entered a grueling period of chemotherapy and surgery, along with constant, numbing fear of suffering, pain and death. The sadness continued.

In spite of all this sadness though, I decided to take a risk. Three years into my diagnosis I began to date. Because of the cancer, I did not know how long I would be alive. I only knew that I was stable for now, and I wanted to continue living. And living included dating. I entered dating only hoping to find a companion, someone with whom to pass an occasional evening. I did not expect to love the man sitting across from me. After Jeff and I began seeing each other, friends told me I looked happy. In dating, I took life day by day, partaking in what was in front of me, and I enjoyed my time with Jeff. I certainly hoped that Jeff would stay, but I had no expectations. I was, after all, someone with metastatic cancer. There were no guarantees in my future except a likely too-soon death. So when Jeff asked me to marry him, it was an unexpected joy. After so many years of unrelenting grief, it was a relief to finally receive some good news.

So what I felt on my wedding day was a sense of celebration of good news amidst the bad, a safe place in the middle of the storm. And this is what the best man did not know me well enough to say. For me, my wedding day was a day of sunshine in the darkness, a reprieve of the howling winds of grief. This day was a day unlike all others. It was a day of unmitigated joy. Now, looking back, I wish I had had the courage to ask someone to speak this truth for me, but I did not. So the only thing I can do is write my own wedding words, speak my own joy and tell my own story of unexpected love in spite of sadness of loss. Because, on that day, my wedding day, these words of renewed hope and returned growth after a scorching forest fire were the most important words of all.

Even after the longest storm, there are moments of hope and rest.

Hope In the Midst of Cancer Sadness

The language of cancer is loaded. When you are diagnosed, well-wishers tell you that you can “beat” cancer, that it is merely a blip in what will be a long, fruitful life. People speak of the gifts of cancer, the lessons learned, the good that comes from the bad. Certainly, I can understand why people do this. Cancer is terrifying and just like whistling in the dark on that walk through the cemetery, focusing on gifts and lessons makes the cancer beast a little less scary. 

The cancer marketing machines use this spin on feel-good cancer as well. Images of women linking arms as they “beat cancer,” inspires the raising of millions of dollars, some for the good of research and helping people, and too much to line the corporate pockets of disease greed. Out of every $100 raised by the NFL during its breast cancer awareness campaign, for instance, only $11.25 went to the American Cancer Society.

And like the rah-rah phrases of a beatable cancer, these cancer marketing machines often do not honor the real victims of cancer. When Steelers running back DeAngelo Williams asked to wear pink for the entire season, rather than just October, in honor of his mother who had died of breast cancer, the NFL told him no. And when Williams’ teammate Cam Heyward wore eye black in honor of his father’s death from a brain tumor, the League 

. Williams and Heyward were telling stories of real people, real losses, and this sad picture would not have furthered the NFL’s marketing campaign. So they were not allowed.

Because of his honest approach to cancer, the comic book character, 

, has become my unexpected hero. Before he morphs into the mutant Deadpool, he is Wade Wilson, a young man, happily living life, in love with a beautiful woman, until he is given the horrible diagnosis of terminal cancer that has invaded most of his vital organs. His girlfriend is quick to take the battle stance, telling him, “I love you, Wade Wilson. We can fight this.” But Wade knows the truth. “You’re right. Cancer’s only in my liver, lungs, prostate, and brain. All things I can live without,” he sagely responds to her battle call.

In this understandable attempt to sugar coat cancer, the patients and their family’s pain and lasting scars are continuously minimized. If only cancer were always so easily beatable, simply a romantic faint on a hot Victorian afternoon, after which the swooning lady is carried to a chaise and revived with the scent of freshly-brewed tea. Cancer does not make sense. It happens and it is hard, even if the patient survives. Treatment leaves lasting scars, and the trauma of a cancer diagnosis and treatment often leaves survivors and their families with an undeniable case of Post-Traumatic Stress Disorder, financial burden, and depression. As Deadpool notes, after losing almost everything to the disease, “Cancer is a s**t show, like Yakov Smirnoff opening for Spin Doctors at the Iowa State Fair kind of s**t show.” And that’s not a good show at all.

The desire to minimize cancer pain is so strong, even the worst of deaths are softened. An 

 detailing the recent death of a young mother from breast cancer shocked me with its softening approach. The article told the story of a young couple, Carrie and Chris. Two weeks after Carrie and Chris brought their son Henry home from the hospital, they discovered that Carrie had stage 4 metastatic breast cancer. She was 32 years old. For four years Carrie and Chris poured everything into trying to “beat” the cancer, and focused as much time as they could on their son. In March 2016, they received the news that Carrie’s body was giving out, and the couple was devastated. Chris, a man who had devoted himself to his wife, left the world five days before his wife’s death on March 25, 2016. Carrie was buried on what would have been her 36

 birthday.  Their son Henry was left behind.

Carrie did not beat cancer. Chris was destroyed by the cancer that killed his wife. Henry is left without his parents. This is devastating, destructive and horrifying. Yet, the title of the article is, “Moving On: Another Cancer Angel.” Carrie and Chris did not “move on.” They were destroyed by a disease that decimates over half a million people in the United States alone. I thought about Carrie, Chris, Henry, and Lana, Carrie’s mother who thankfully is still here to raise Henry; the only light of good in this tale of woe. And then I thought of the loved ones of the over 

500,000 people who die of cancer in the U.S. each year

. Every one of the over 500,000 people who die each year have loved ones, a Chris or two sitting with them, praying they will “beat” the cancer, waiting for results of the latest scan, helping their loved one move from a couch to a bed because cancer has taken away all of their loved one’s strength. Even if each cancer patient who dies has only two loved ones, this means at least 1.5 million lives are wrecked each year by a disease that is supposedly “beatable.”

Cancer patients who are dying are not people who are simply “moving on.” They are empty spaces in people’s lives, tears in the middle of the night, a football player’s drive to smear eye black under his eyes to honor his father’s death during each and every game. As Linda Loman, in the play "Death of a Salesman

 demands of her sons as her husband’s life crumbles before them, “He’s not the finest character that ever lived. But he’s a human being, and a terrible thing is happening to him. So attention must be paid. He’s not to be allowed to fall into his grave like an old dog. Attention, attention must be finally paid to such a person.”

In the same way, people afflicted with cancer are also human beings. They are not faces in a marketing campaign, a person being given a gift or a lesson to be learned. Cancer is no gift. It is a scourge taking more lives and loved ones than diabetes, strokes and Alzheimer’s. (Only heart disease kills more people than cancer 

). The only hope of beating cancer is medical research, and thankfully breakthroughs have allowed more and more cancer patients to live or live longer.

As President Obama proclaimed in his announcement of the 

 during the January 2016 State of the Union Address, “For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all.” This is a dream for anyone afflicted with cancer and their loved ones, particularly for those who move on to a metastatic cancer diagnosis. If this dream were to become true, that cancer could be cured once and for all, then perhaps we can talk to cancer patients of beating cancer or learning lessons. But until then, cancer remains a tragedy in too many people’s lives. And because this tragedy goes on, attention must be paid. 

Only medical research can beat cancer, and the tragedy of cancer deaths cannot be softened.

Beating Cancer: The Real Life Battle for Patients and Their Loved Ones

In my time dealing with cancer, I've discovered that not only is cancer an illness, but it is often used as an identifier as well. After diagnosis, women are referred to as breast cancer survivors. If a woman is diagnosed with stage 4, metastatic breast cancer, she is referred to as terminal. It's as if the cancer becomes an integral part of a person's identity. We are no longer just wives, mothers, co-workers, daughters, sisters or nieces. We are "the niece with cancer," "the co-worker who is dying," "the sister who is a breast cancer survivor."

In the metastatic breast cancer community, women debate what to call themselves. They don't feel comfortable with the “survivor” label since that is so often associated with the pink world that you'll be okay and breast cancer is curable. It is not, especially for the 30 percent of us who will later move on to deadly stage 4. Knowing we won't survive it, many with metastatic cancer insist upon being called a metavivor, someone who is continuing on in spite of a stage 4 diagnosis.

For me though, as I've continued down this road of dealing with metastatic breast cancer, I've found that I never wanted to be a cancer survivor, a cancer thriver, a cancer metavivor or a cancer anything at all.

I am not a label. I refuse to live my life that way. I am Susan. I have brown hair, hazel eyes, a kind heart, a wicked sense of humor and I also happen to have metastatic breast cancer. Like diabetes, arthritis and heart disease, it is merely a medical condition I have, not a part of my name. I am not cancer Susan, dying Susan, or metastatic Susan. I am just Susan.

I understand where the tendency for labels comes from. Cancer is a nasty disease. The disease and its treatment tears people apart physically, causes tragic levels of pain and the associated treatment costs bankrupt many struggling to pay the resulting medical bills. Cancer is so looming in its destruction; people often see only the cancer rather than the person.

So-and-so has cancer? Everyone begins to talk about that person in hushed tones. “Oh, poor Ruby. She’s a goner.” The assumption and the association are easy to make.

But here's the deal. I am getting married in July, and my cancer has nothing to do with my engagement. My fiancé, Jeff, was attracted to my humor and my spirit, not the cancer I happen to host. Jeff decided I was someone he wanted to spend his life with, so he asked me to marry him. I said yes. He knew about the cancer. He knows how metastatic cancer works. He asked 

 to marry him, not the cancer. So I am just like any bride. I want to celebrate this wonderful union with this incredible man who has chosen me and whom I have chosen back.

But still, the labels persist. From the aunt who congratulated me on my engagement and then immediately told me about an in-law of hers whose cancer is so bad he is stopping treatment, to the friend who told me that in spite of my stage 4 cancer, I get to celebrate milestones too. All of these responses wrap me and my wedding in cancer. It's as if all of my life has cancer, not just a part of my body.

This is not a cancer wedding. This is my wedding. So even if I hobble down the aisle, my chemo wig askew, dragging an IV pole, I want everyone, including myself, to pretend I don’t have cancer. Look past the IV pole and look at me, the bride. Look at me holding hands with my love, committing my life and my love to him. I am not a cancer bride. I am a bride named Susan. And on my wedding day I will eat cake, dance, hold my new husband and let him hold me, and celebrate. And I will thank God that I am alive.

Susan F

Tired of Cancer

Hope In the Midst of Cancer Sadness

Beating Cancer: The Real Life Battle for Patients and Their Loved Ones

Let's Pretend the Bride Does Not Have Cancer

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