Let's Pretend the Bride Does Not Have Cancer

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.

Here's the deal though. 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 me 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.

Also published on CureToday

Hope In the Midst of Cancer Sadness

Courtesy of Jeff Salmore Photography

I got married in July. 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.

Also published on CureToday

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

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 fined him $16,000. 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, Deadpool, 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 April 2016 article 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 36th 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 every year). 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 Cancer Moonshot 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.

Also published on CureToday

Love and Cancer: I Am Worth It

Even on a good day I am insecure about dating. But give me a good case of metastatic breast cancer, and I’m out-of-this-world insecure about dating. I’ve got cancer. I could go at any time. I could slip into a world of suffering and disability before I die. Who would want to sign up for that?

Never mind the fact that right now, my disease is stable ... that I’m active ... that I’m alive. Slipping into future fear is natural to me. When I slip into the future, I miss what’s happening right now, right in front of me. And right now, I am dating a wonderful man. His name is Jeff. He loves being with me. He enjoys my company. He thinks I’m sexy. That’s what is true in my life, at this current moment: I am loved.

Jeff and I have started seeing a couple’s counselor. We're not seeing a counselor because our relationship is in trouble, but because we have different ways of talking about our feelings and it just seemed a good idea to get some help in bridging the gap. There were a few things I was afraid to tell Jeff, a couple of secrets I was keeping. The biggest secret was that I was afraid he would leave. I was afraid to talk about the cancer, about my fears surrounding cancer, because I was petrified Jeff would figure out that the cancer was likely going to kill me, and then he would run for the hills.

For some reason though, in that counselor’s office, I felt safe to tell Jeff my fears. I went into depth, detailing my concerns, my trepidations about talking about my diagnosis and I was sure he would leave.

His reply?

"At our age, we’re all on a timeline."

I have never loved him more than at that moment. I had shared my darkest fear about our relationship, and Jeff told me that my diagnosis didn't scare him. He was not afraid to be with me, no matter what the future brought. Now I don’t mean that Jeff isn’t afraid of losing me — I’m sure he is. But with that statement, Jeff was telling me that in spite of my diagnosis, he thinks I’m worth the risk. He is willing to stay. God bless him and give him lots of treats.

Being worth it has always been my greatest love fear. My deep-down belief that somehow I am not worthy of love has driven me to chase love away before love has had a chance to leave me. In the past, a man could have hired a pilot to write his love for me in the sky and I would have questioned him continuously about whether that love was real. I have been in long-term relationships, been told over and over again by a man how much he loved me and had that love demonstrated repeatedly through caring and attention. But each time, I would badger the poor man, believing he wasn’t telling the truth. And of course those relationships ended. Somehow, though, when this man tells me he loves me, I believe him.

I look back at my life and sadly note all the love I turned away due to my own insecurities. In a way, entering the world of cancer and impending death has helped me to shed these time-wasting thoughts. After cancer, I realized I was worth protecting and I could limit my time with hurtful people. After cancer, I realized it was OK to say no to guilty obligations and instead spend time engaging in activities I enjoy. After cancer, I realized I was actually pretty cool and likeable and that the people who had left me when I was a child, left because of their own problems, not because I was unlovable. Sometimes, these new habits and beliefs of worthiness are hard for me to remember. But in a weird way, reminders of my impending death quickly bring my worthiness back into sharp focus.

So for this Valentine’s Day, I have someone who loves me and I believe him when he says it. Because I believe he loves me, I feel free to love him right back. Sounds like a win-win situation, doesn’t it? I don’t expect flowers on Valentine’s Day, but I do expect love. That is a new feeling for me. Believing that I am worth it makes every day a Valentine’s Day. I don’t mind living the rest of my days believing that.

Also published on CureToday

Hope in the Face of Death: Living With Metastatic Breast Cancer

There have been too many deaths this December. It seems as Christmas approaches, that the deaths from metastatic breast cancer pile up.   

Women like Heather McManamy, a young mother from McFarland, Wisconsin, who was diagnosed with aggressive breast cancer in 2013, and wrote over 40 letters to her four-year-old daughter to mark the milestones in her daughter’s life she knew she’d miss. When Heather died, her husband shared her goodbye letter on Facebook.   

"Yes, this sucks. It sucks beyond words,” her letter reads, “but I’m just so damn glad I lived a life so full of love, joy and amazing friends." She then went on to instruct her loved ones to remember her with a revel, to run up a bar tab of which she’d be proud.    

And women like Adrienne Toth, another young mother, diagnosed with aggressive breast cancer when she was pregnant with her son, starting chemo during her second trimester. The cancer became terminal in March 2014 and Adrienne was dead by December 2015.   

And Carolyn Frayn, diagnosed with stage 4 disease in 2012 at age 51, who died just a few days ago. Carolyn was a strong advocate for those with metastatic breast cancer, and as she pointed out, because early-stage breast cancer can move to stage 4 even years out, everyone who has been diagnosed with breast cancer needs to fight together for more research and an ultimate cure.   

Cancer is capricious. It is impossible at this point, to tell if or when it will return. Once the cancer moves to stage 4, there is no way to know how long a person will live: statistics show that only 22% of stage 4 breast cancer patients will live five years. After my own diagnosis, an oncologist said that how long someone will survive is entirely dependent on the biology of the cancer and the biology of the person with that cancer. In other words, some people just have lucky biology.   

Women like Sandra Spivey (who has lived 18 years with metastatic breast cancer), Jill Cohen (who died after 14 years) and Debra Strauss (who has lived for 24 years) — these women have been lucky and have lived for years with metastatic breast cancer.   

That’s what we do, those of us with metastatic cancer: We look at these long-term survivors and we pray that we will be lucky too. We pray that 24 years from now we will be attending fundraising events for Living Beyond Breast Cancer, as Debra Strauss does, that we’ll be here to see daughters or sons graduate, that we’ll be able to play with yet-to-be grandchildren and maybe even live long enough to cash in that retirement nest egg. That is the metastatic cancer patient’s hope and dream.   

The future is very uncertain for a metastatic cancer patient.  As Carolyn Frayn noted in a 2014 interview with Laura Huffman: 

“The most disconcerting issue I find is the uncertainty. We just don’t know how long we have left to live after a metastatic breast cancer diagnosis, when we will progress, what — or if — treatments will be available when we do, nor what type of death we can expect. We could live the median of two to three years, or we could be an outlier, that infinitesimal percentage of people who live 8, 10 years, or longer. It messes with your mind, your sleep, your resolve.”

Michael J. Fox describes living with Parkinson's Disease as stepping into the road, then freezing in the middle of that road as a bus hurtles toward you. The challenge is how to live while a bus bears down. Life in the bus lane for me has required a delicate balance. A balance of living day by day, while looking toward the future for treatments I pray will be released just in time to save my life.  I scour Twitter for articles detailing even the smallest cancer research breakthrough. Before scans, I search ClinicalTrials.gov or the Metastatic Trial Search tool in hopes of finding a clinical trial that might keep me alive until new treatments are released. 

Every time I hear of cancer deaths, Nancy, my Imerman Angel, talks me down from my emotional ledge. She reminds me that my story is different, that I can’t judge my future by someone else’s story. We all have differing biologies, differing paths. But still, cancer deaths are hard to ignore. It takes a while for me to dim the black shroud hanging over my head and begin to hope that maybe my story will be different. I certainly hope to live more than five years and become part of the 22% — I am currently at year four. Frankly, hope is all I have.  

So, I honor the women who have died before me and advocate for research to find quick-to-market, less toxic treatments in hopes of saving my own life and the lives of others yet to be diagnosed. All I can do is focus on each day I am given, say a prayer and live my life in the best way I know how. For me, being alive and advocating for research is holding on to hope. 

Also published on CureToday

Break It To Them Gently: Informing Patients of Test Results

'Cancer' is a terrifying word. The first time I heard the word directed at me was in 1996. I was 32 years old. I had just had a colposcopy after an irregular pap smear. The call from my gynecologist was forwarded to me at the library reference desk where I was working.

"The pathology report showed cancerous cells. We need to remove them. I'd like to do a LEEP procedure so we can get clean margins."

It was stage I cervical cancer. I was at work. I will never forget that feeling of shocked confusion as I finished my shift.

The phone would continue to be a part of my cancer journey.

In 2011, there was a suspicious mammogram, followed by a biopsy. I was informed by phone that the biopsy showed cancer. After the next test, an MRI, I was told by phone that the scan showed two distinct tumors in my breast. I was also told by phone that the HER2-positive breast cancer had spread to my bone and liver. This call was made by my oncologist's nurse practitioner as I was sitting down in the chair to receive my first chemo. The bone and CT scans had just been returned to my oncologist, and they were trying to stop the previously planned chemo so that we could change treatment direction in light of the new diagnosis. The nurse practitioner pronounced that the scans showed lesions on my bones and spots on my liver. In my mind, spots on the liver meant I was going to die and die soon. I had taken the call at the nurse's station. When I heard the nurse’s words, I began to sob and I began to hate the phone.

But as time went on, and I received more test results, I realized I didn’t hate the phone. I hated the way in which news was being delivered over the phone. The radiologist who called to confirm that the breast biopsy showed cancer was kind, measured and detailed in her report. I was grateful for this approach, even calmed. My gynecologist who called to tell me that the breast MRI showed two tumors had not even bothered to have the scan report in her hand during the call and was dismissive of my questions. The nurse practitioner who informed me of my stage 4 metastatic breast cancer turned out to be someone who lacked social skills and should not have been informing patients of any test results. It's all in how the informing is handled.

Certainly the topic of how patients prefer to be informed of test results is of great interest. The Breast Cancer Social Media (BCSM) Community, a group of doctors, researchers, patients and advocates asked just this question in a survey How Do You Prefer to Receive Test Results. I have my own preferences in how I want to be informed of test results.

We all know that delivering bad news is horrible for the giver and the receiver. The key is to deliver the news with kindness, provide details of the findings and give a plan for going forward. Here are some do’s and don’ts (from my perspective) of informing a patient that they have cancer: -

• As the test is being ordered, ask the patient how they prefer to hear the results — in person, phone or email. My suggestion is that, if this is a new condition to the patient or the patient is new to you, deliver the results in person. After that, phone or email is fine, as long as the patient prefers this.
• When delivering the news, make sure to have the results report in front of you and provide basic information about the findings, size of tumor(s), location, etc. Give the patient an idea of what cancer in these locations mean in terms of treatment, symptoms, etc.
• Do not give survival statistics to the patient. Ever. After my own diagnosis, an oncologist stated that how a patient does is dependent on the biology of the tumor and the biology of the person who has that tumor. I looked up the statistics after leaving the oncologist office, but I had gotten the message that every metastatic patient is unique before viewing those numbers. And the oncologist’s message gave me hope, which is a key element in living with cancer. Do not take away that hope.
• At same time, do not tell the patient that metastatic cancer is a chronic condition. It is not. Cancer will most likely kill that patient. A small, but increasing, percentage of metastatic cancer patients live for many years. Most don't. False hope only provides a higher place to fall from when the cancer does what it will, and that may end in a dangerous depression for the patient.
• Deliver the news with kindness.   "The scans show that the cancer has spread. Here are the treatments available. There are several more treatments being developed. Patients have lived for years with this type of cancer. Every case is different."
• Stick to the reality of the situation at that point, not what may happen in the future. Do not speculate about what may or may not happen: ascites, pleural effusion, death-bed scenes. Follow this rule at every point during the treatment. If the symptoms haven’t appeared yet, do not delve into them. Letting patients know about possible side effects for a treatment being discussed is helpful, but not when a patient is first being informed of test results. See the comment about hope. Looking down the road towards suffering and death is another way to take away a patient’s hope.
• With side effects of treatment in mind, ask the patient about their treatment goals and priorities. I've heard mothers of young children say that they are willing to deal with any side effect just so they can stay alive for their children. For me, my focus is on quality of life. Five months of weekly Taxol disabled me and took away all of my quality of life. I am determined to stay only on targeted therapies in order to preserve that quality of life. I also believe in the right to die and want this option available so that I am not forced to live my final days in a constant state of suffering. Each patient has different priorities and goals. Ask about them.
• Finally, ask the patient how they want to receive test results going forward. For me, receiving basic results via email is good. I prefer to receive more detailed results by phone — I just want to know the results. The key is in how the news is delivered. As I wrote, informing the patient with kindness, giving details about the findings and providing a plan going forward are the key.

Although everyone has their preference in how they want to receive test results, I thought it would be helpful to give some basic guidelines, based on my experience of receiving test results. To all the patients out there: Chime in about your preference via comments. Here’s a chance to let the incredible medical teams who are helping us know about how you’d like to be informed.

Also published on CureToday

Finding Calm in the Face of Cancer

It's 1:00 a.m. and I'm still awake. I've been waking up every hour all night long. I have a new pain spot on my back and I have become convinced that the cancer is growing. So I am scared ... very, very scared.

Cancer is terrifying. Michael J. Fox describes his experience of Parkinson’s Disease as crossing the street and getting stuck in the middle of the road as a bus hurtles towards you. You know that the bus is going to hit you, you just don’t know when and how bad it’s going to be. Learning to remain calm while watching the bus fly at you is one of the greatest challenges of living with metastatic cancer.

The hardest part for me is that when the panic comes, it comes in the middle of the night. Normally, I would call someone to find support, but calling after bedtime is not a popular move. So I’ve had to learn how to calm myself. While I do have a prescription for Ativan (I joke that having cancer makes me a legalized drug addict), I try not to use it unless the panic is really bad. I don’t want to build up a tolerance for the drug and not have this aid when I am truly desperate. I have a few calming methods I’ve used over time, but lately I’ve been more scared than usual and I need more tools in the toolbox. So I asked the women I know in a private group for metastatic breast cancer and they suggested a bucketload of calming methods. Here is the list in an easy-to-use format:

•Meditation: Guided meditation, breath-focused meditation, prayerful meditation, whatever works for you. Sit up, lie down, stand, any position works in meditation. I’ve used guided meditation with good success, including times I’ve been in pain. Another cancer patient recommended meditations from the website healthjourneys.com and I’ve downloaded several (they sell CDs and MP3s). There are a plethora of sources for meditation CDs. But, if you prefer learning meditation in person, many yoga studios offer meditation classes. A good place to start in finding meditation classes in your area is by searching the Web or asking the social worker at your treatment center.

•Mindless entertainment: Comedies, the Home Shopping Network, music videos, crime shows, movies, anything that will keep your mind off the matter at hand. Music videos work for me, but they’re harder to find nowadays since MTV stopped showing them. So I've had to settle for talk shows or crime dramas (I joke that death comforts me, at least murder does). Whatever works, watch it.

•ASMR Videos. Some people are calmed by gentle sounds or actions. This is called autonomous sensory median response (ASMR).  An excellent example of ASMR videos are the painting instructions of Bob Ross whose show "The Joy of Painting" was broadcast on PBS from 1983 to 1994. Many claim that the sounds of his whispering voice and the strokes of the paint brush lulled them into a state of relaxation. The ASMR Lab website has links to a wide variety of ASMR videos.

•Crafts: Adult coloring books, knitting, crocheting, cross stitch, scrapbooking, any craft is a great take-me-away. I had not heard of adult coloring books before the women in my group brought them up, but these are apparently very popular. I found that craft stores sell adult coloring books, along with colored pencils. While going through my first chemo, I used counted cross stitch to keep my mind off things.  I was able to stitch in the middle of the night, when the steroids were keeping me awake. Unfortunately, the combo of Taxol and steroids meant I did not count accurately, so the resulting project is a bit out of whack. But it did its job and kept my mind occupied.

•Physical activity: Walking, running, bicycling, yoga, gardening, swimming, dancing. Move to keep calm. My mother, when my parents were divorcing, walked our Old English Sheepdog, Sybil, for miles and miles. My mother was a stay-at-home mom and was about to re-enter the workforce while caring for four children — she was understandably stressed. The walking seemed to be the only thing that kept her sane. And the dog sure was happy.

•Playing games: Sodoku, crossword puzzles, board games, jigsaw puzzles and online games all work in the world of calming. Plus, with online games, some cancer folks say they have found a sense of community among other gamers like them happy to talk and offer support.

•Reading: Fiction, nonfiction, poetry, silly magazines, serious magazines — Reading is a great escape. I love People magazine myself (it’s my guilty pleasure). I’m a voracious reader and being able to spend time in someone else’s world is just the ticket I need.

•Music: For me calming music is gentle-toned, go-to-sleep music. But for others it may be heavy metal, rap or punk. Loud, soft, gentle, energetic — If music works, dial it up and float away.

•Plan a trip: I discovered this technique recently. I am planning a trip to England; I’ve never been and have always wanted to go. The excitement of discovering things to see in England has been helping to keep my mind off cancer. I am very grateful for this since my next scan is scheduled right after I return from England. Planning the trip seems to be cutting my usual scanxiety down to a more manageable level. I certainly can’t afford constant trips to England, but maybe weekend trips? Or I could focus on that big trip next year? I’d plan a trip to Hades if it helped me stay calm before a scan.

•Deep breathing: Last, but not least, deep breathing. Years ago, a counselor taught me the 4-7-8 breathing exercise. When things get really rough, I find that this always works within a few minutes. Here’s how it works:

1.Exhale completely through your mouth.
2.Close your mouth and inhale quietly through your nose to the count of four.
3.Hold your breath for a count of seven.
4.Exhale completely through your mouth, to the count of eight.
5.Inhale again and repeat the cycle three more times for a total of four breaths.

I hope you find this list helpful. I know that when I’m in full panic, it is hard for me to think. The goal was to create an easy-to-follow reference list that will help us all soothe the panic when it’s bearing down. I mean, as long as I have to stand in the middle of the road, waiting for the bus to hurtle towards me, I might as well read a few good books, watch fun movies and breathe deep. Oh, and maybe I can also dance.

Also published on CureToday

The Right to Die

On Friday, July 10, 2015 I testified before the Washington DC Council in support of Councilmember Mary Cheh's proposal of the Death With Dignity Act. Below is what I said to the DC Council. In November 2016, after several more hearings, the DC Council voted to expand access to end of life choices for Washington, DC, residents, for which I am eternally grateful.  Here is the testimony.

I do not want to die. I do not want to talk about dying. But death is a topic I can’t escape. I have stage 4 HER2-positive breast cancer to the liver. I was diagnosed in January 2012 at the age of 47. I immediately began chemotherapy and weekly Taxol, which led to debilitating exhaustion and neuropathy severe enough that I fell and dropped objects I couldn’t feel in my hands. At my insistence, after five months, my oncologist finally stopped the chemotherapy — luckily the cancer was stable — and I began to recover. Since then, my cancer has responded well to targeted therapies such as Herceptin and Kadcyla, treatments with far fewer side effects, which means I am able to work and have a good quality of life.

I am lucky ... for now.

But cancer is smart. It learns the treatments, and begins to grow again. The downward progression of cancer is predictable. As I move through increasingly toxic treatments, my side effects and pain will become more and more disabling, and my world will become smaller and smaller. If my cancer spreads to my lungs, I will need an oxygen tank to breathe and will have little strength for physical activity. The narcotics I will need in order to control my pain will make it hard for me to function or think clearly and will also lead to severe constipation. The pain and disability will trap me in my house. I will be unable to work, unable to get out to visit friends, and I will become isolated.

Eventually, as the cancer spreads in my body, I will develop ascites or pleural effusion, fluid buildup in the abdomen or around the lungs. The pleural effusion will make it harder for me to breathe. The ascites will cause me pain, make me sick and tired, and also make it hard for me to breathe. The only relief I’ll get is having the fluid drained by a doctor. If the cancer spreads to my brain, I will have vision problems, severe headaches, seizures and possibly even paralysis. All of these symptoms will get worse over time, confining me to a life of disability, pain, fear and loneliness.

Seven years ago my mother had a hemorrhagic stroke. CT scans showed the stroke had destroyed most of her brain. She was on life support. Per her living will, my brother and sisters decided to take my mother off support and help her die.  Because this was in Wisconsin, there was no access to aid in dying, meaning all we could do as she died was give her pain killers when allowed. I remember watching her as she died, thinking, “We’re allowed to be kinder to dying dogs than we can be to the people we love.” It was a helpless, sad and desperate experience. 

Shortly after my diagnosis with cancer, a gentleman I know whose mother died of the disease asked me, “Are you afraid of dying in pain?” It was a horribly awkward question, but easy to answer. I am terrified of dying in pain. I darkly joke with my cardiologist and oncologist that my goal is to die of a heart attack. I can eat high cholesterol foods, stop exercising, stack the odds for that heart attack, but there is no guarantee a heart attack will come.

Cancer, however, is a guarantee. It has already spread in my body. It’s a death lying in wait, a death of suffering. I am able to end the suffering of my pet and help her gently die. But I could not offer that same kindness to my mother as she died. And I cannot offer that same kindness to myself. I have lived in Washington, DC, for 16 years and I plan on staying here. The promise of aid in dying in Washington, DC, offers me comfort in this horrible situation.

I do not want to die. I will not be anxious to choose death. But when the cancer pain becomes severe, I will be grateful for the charity of a compassionate death. That thought helps me live in this moment now and not think of what will eventually come. Please help the people of Washington, DC. Give them access to aid in dying.

If you would like to find more information on aid in dying, contact the Death With Dignity National Center or Compassion & Choices.

Also published on CureToday

Living and Dying Might Depend on Cost

What is a year* in the life of a metastatic breast cancer patient worth? About $100,000, according to a study published in the Journal of Clinical Oncology entitled Cost-Effectiveness of Pertuzumab in HER2+ Metastatic Breast Cancer. And even at $100,000, the study’s authors contend Perjeta (pertuzumab) “is unlikely to be cost effective in the United States.”

Perjeta, approved in 2013, was welcomed as a boon to the HER2-positive cancer community.  Combining Perjeta with Herceptin (trastuzumab) and docetaxel was found to add almost twol years to the life of a metastatic breast cancer patient. But Herceptin is priced around $4,500 per month and Perjeta around $6,000 per month (source).The resulting $10,500 a month or $126,000 year cost for Perjeta and Herceptin alone makes this a very expensive treatment, indeed.

From a strictly economic standpoint, it makes sense to perform a cost-benefit analysis of the use of treatments in certain patient populations.  Metastatic cancer patients typically live fewer years than non-metastatic cancer patients. So it’s simple. Looking to buy a new pair of shoes?  A high-quality pair, priced at $100, will last 10 years. The amortized value of those shoes works out to $10 a year. A lower-quality pair of shoes, priced at $20, but needing to be replaced every year? That brand will cost you $200 over 10 years. Which pair of shoes is cheaper in the long run? Which pair of shoes would you buy?  Metastatic cancer patients live fewer years, and the cost of their treatment is high, so the overall cost of the treatment is higher. Based on that math, as the study states, “Expensive targeted therapies are far more likely to be cost effective in the nonmetastatic setting.”

But it’s not as simple as that. There are those two years added to a patient's life. We metastatic cancer patients live in dog years. For me, those those years are more like 14 years. That’s extra time I get to spend with the people I love, time I can dedicate to advocating for a cure, time I can spend enjoying the sun on my face.  It’s as my friend Beth Caldwell, another metastatic breast cancer patient, says, “Nobody who lives with death looks at cancer drug prices and says, ‘Nah, too expensive. I'd rather die.’"

That’s the problem. New therapies are expensive, drug companies setting the price for several recently-released treatments at over $100,000 per year. Even with good insurance, providing 80 percent coverage for prescribed medications, this leaves the patient with $20,000 or more in debt. And this type of debt means people living with cancer are three times more likely to file for bankruptcy than people without cancer (source).  The high prices set by drug companies are the real battle, not the worth of a human life. It’s simple. If the drug price is set too high, society then has no choice but to ask the hard questions about whose life is more worth saving. People cannot afford these prices. Society cannot afford these prices.

Major cancer centers like Memorial Sloan Kettering Cancer Center have already started addressing the problem of drug pricing. In 2012, MSK researchers evaluated the drug Zaltrap against Avastin, both prescribed for the treatment of colorectal cancer. Zaltrap cost about $11,000 per month, twice as much as Avastin. In their evaluation, researchers found that both drugs extend life by 1.4 months, but beyond the slightly higher toxicity of Zaltrap, there were no major differences in the drugs besides the cost. MSK decided to not offer Zaltrap to their patients, writing an op-ed piece in the New York Times to explain their decision. In the face of this challenge to their pricing, the drug's co-marketer Sanofi dropped the price of Zaltrap in half, confirming that the price had been artificially set at an unrealistic point in the first place (source).

In the process, Hagop Kantarjian, one of the MSK doctors leading the charge, raised questions about the ethics of the current pricing model and challenged the increasing practice by drug manufacturers of charging people faced with life-threatening disease enormous sums of money for the life-saving drugs that they require. He also brought into question a law that prevents Medicare from negotiating lower prices with drug companies. This situation is unique to the U.S. All other countries negotiate acceptable prices for drugs, which can result in 50 to 80 percent lower prices. As more high-priced novel therapies are tested and administered in combinations of two, three, or more drugs, the need to negotiate these inflated prices truly becomes a matter of life or death (source).

With climbing drug prices, more and more patients are forced to fight for coverage of drugs that may save their lives. And patients are fighting. Maria Greenfield, the mother of a special-needs child and metastatic breast cancer patient from Florida, has gone through several treatments since her diagnosis with stage 4 metastatic breast cancer in 2012.  With the failure of her latest treatment, her oncologist recommended the newly-approved drug Ibrance (palbociclib), priced by Pfizer at $9,850 per month, or $118,200 per year. Her insurance company, Humana, rejected repeated appeals for coverage of the drug, their on-staff doctor stating she was “too far gone” for the recommended treatment to be of benefit. Maria launched a social media campaign pleading her case and visited Humana’s local office to personally tell the insurance company she was not ready to die. Humana approved her appeal that very day, overnighting the medication to her local pharmacy.

Denying claims is what insurance companies do. They are in the business to make money, not lose it, and $118,200 a year is quite a bite into their profits. Coldly declaring patients as “too far gone” is business as usual for insurance companies. A terminally ill patient who dies no longer needs medical insurance coverage, and therefore does not cost the company money. But by artificially setting the price of new therapies so high, drug companies become a complicit partner in the business of denying life-saving therapies to desperate patients. Insurance and drug companies have become an unofficial death panel, deciding who lives and who dies via drugs priced out of economic reach and refusing to cover those high-priced drugs.

So the question remains: Who is worth saving and whom do we let die? Certainly, if drug companies continue to set prices for pivotal treatments so high, insurance companies will deny coverage more and more, relegating the patients deemed “too far gone,” whether they are or not, to an earlier grave. Maria Greenfield has gained almost four years through the care of a good oncologist and continued treatment. If she had not been successful in her fight for coverage of the drug her oncologist recommended, where would she be? Who would care for her family — her special-needs son whose teeth she brushes every morning? What cost would her loss be to her husband, her son and society as a whole? The drug and insurance companies do not see this as their problem. They are only trying to make money. Their ethics are certainly suspect. So we need to make it clear that the lives of Maria Greenfield, myself, and countless other metastatic cancer patients are worth saving. We are their problem. One in four men and one in five women are at risk of dying of cancer (source). Who will decide which of the five gets to live and which of the five gets to die? Right now, that decision is increasingly based on the cost of the treatment you may need.

* Outcomes in the Journal of Clinical Oncology study included health benefits expressed as discounted quality-adjusted life-years (QALYs), costs in US dollars, and cost effectiveness expressed as an incremental cost-effectiveness ratio.

Also published on CureToday

Cancer Is Not a One-Person Job

I am a take-care-of-it, planning kind of gal. For those of you who know me, that fact comes out in, oh, about five seconds after introduction. Got a group needing to be seated at a restaurant? I will work with the host to find the best table. Have a medical issue? I'll do research and send you the information. I like to have my life organized and I love to reach out to others. My helping ways may be a bit annoying at times, but I mean well. And I like doing it.

That's why this cancer thing has me thrown for a loop. Never mind the fact that I really have no idea how this will work out (will I go into remission for years or will I suffer bout after bout of recurrence?), but now I have no choice but to ask others for help and making plans is an iffy proposition, at best.

Trying to plan a time to fly back to Wisconsin to visit family? I have no idea when to do that. An unexpected visit to the ER? Who will take care of my dogs? Chemo extended? Who can I ask to help me during the extra chemo treatment? Of course I need help. Cancer is not a one-person job. But I was raised not to ask for help and I sure have a hard time receiving help. And once I ask for help, I want to put a plan in place and I am hoping like heck to not have to ask for help again. I just do not want to be a burden.

My first time through chemo, my treatments were unexpectedly extended, meaning I had no choice but to ask for more help, after my friends and family had helped so much already. I had forced myself to ask for help for the first round. I had a plan. I knew my need would end on this date and then I could go back to being independent. But suddenly I was being told that the incapacitating treatments would go on for an undetermined amount of time. Not only would I have to ask for more help, but I did not know when that need for help would end. It was torture. How could I ask for so much and how could I plan when I had no clue about the end point? I did not know how to absorb the news. Luckily, I told all of this to my friend Deborah. Her frank response helped me through.

"Get over it," she said. "Ask for help. People want to help." So I followed her advice and asked for more help.

People began to respond. Some responded right away, giving an immediate yes. But others did not answer so quickly. I, of course, interpreted this as "people are sick of me and tired of helping me all the time." That might have been true for some, but was obviously not true for everyone. It's OK to be tired of helping. I get tired too, so I’m perfectly fine with my loved ones taking a break.
What I didn't realize was that some people may not respond right away. But that didn’t mean they weren’t willing to help. For one chemo request, my Uncle Mike called on the Wednesday before chemo and volunteered to sleep over the night after chemo. God bless Uncle Mike and Aunt Carole. They’ve been a package of blessing for me. My friends Deborah and Carole emailed the night before chemo, volunteering to sleep over the day after chemo. Deborah and Carole, another package of blessing. My friend Jo Ann called and volunteered to come to chemo with me and since that chemo session started at 10:30 a.m. and went over lunch, she fetched lunch for us both. Jo Ann is another 'blessings' friend. But wait, there's more. My nephews Josh and Ben flew in from Wisconsin to cover two of the extra chemo weekends. And there were other friends who trickled in to help.

I finally realized that even though none of this help came on my have-it-all-planned timeline, it did not mean "nobody loves me" and "I'm a burden." The help came just when I needed, in a one-day-at-a-time kind of way. I can't tell you how much it cheered me to know that people cared enough to help. I realized that I am truly, truly lucky and blessed by all the love that surrounds me. But I also realized that people wanted to help. Even people I barely knew wanted to help. People like to help.

This metastasized breast cancer ain't no sent lesson. But I do see how I now have to live life one day at a time. I've had to learn to trust that just because everything doesn't all fall into place in a plan, that doesn't mean the help will never come and that the love isn't there. I have been unwillingly converted in my beliefs about help and have learned to go more with the flow. I have no choice. Let's face it, I've learned that I am not the world's fixer and organizer. I am just a mere passenger on the bus. I've had to learn to trust that when I pull the cord and ask the other bus riders to assist me, they will.

Thank you to everyone who has helped. Your kindness has truly meant the world to me and made it possible for me to continue down this hard road. You all are my support and my strength. Volunteer any damn point you want. I will stop assuming things. I will ask for help. I will take the help. I only hope you know how much I love you back.

And, oh, you got problems or an illness? I got your back and will do my best to be there in any way that I can.

Also published on CureToday

Defiantly Alive

Let's get this straight. I have stage 4 breast cancer. I know what that means. The cancer has spread beyond my breast and it is incurable. I know it can roar back at any time. And I know that the cancer will eventually kill me.

Here's the other thing we need to get straight. I know I'm in for a long haul. I know that the cancer learns the treatments I’m given, and I’ll need to switch treatments again and again. I know that there are many people who become debilitated by this disease and have to stop working and focus entirely on nothing but fighting the cancer. I know all the bad news. And the bad news that I don't know, I don't want to know.

But here’s the real deal, I want to live. I want to color my hair purple, or any other shade I please. I want to focus on days I’m not crippled by exhaustion. I want to be able to enjoy walking around the city, while I can. I want to travel to Toledo or London or Austin or even Bermuda. Yeah, Bermuda. I want to sit in my garden, read a good mystery, and not think about cancer.

I want to live, and I will do anything I can in order to stay alive.

This brings me to the latest in breast cancer news. In July, the Wall Street Journal (WSJ) published an article with the headline Defying Doctors: More Women With Breast Cancer Choose Double Mastectomies. Articles about mastectomies are not uncommon. In fact, these articles seemed to have proliferated after Angelia Jolie chose to have a prophylactic double mastectomy after testing positive for the BRCA gene mutation. But what struck me about this headline was the use of the word "defying.” The impression left by the use of this word? Doctors are the parents, and their patients are their defiant children.  Who do patients think they are? Adults? Independent decision makers? How dare they?

Certainly, when I asked my oncologist about a mastectomy, she worked hard to dissuade me. I am part of a small group diagnosed with stage 4 breast cancer from the start (most breast cancer patients are diagnosed at an earlier stage, although 30 percent of all diagnosed with breast cancer will eventually move on to stage 4). My oncologist was worried that if I had the surgery, and an infection flared, I would not be able to receive possibly-needed systemic chemo. She questioned why I wanted such a radical procedure, telling me that, at this point, the focus was to keep the cancer at bay elsewhere in my body. She stressed that the likelihood of another primary cancer appearing in my breasts was very low.  

All valid points. All reasonably stated. But my reply to her final point was fast and adamant.

"Even if it's rare, if another primary developed in my breasts, that would piss me off."

That gave my oncologist pause. In the end, though I trust my oncologist’s extensive knowledge, the decision was ultimately mine to make.

And this respect of the patient as decision maker is apparently part of the trend in mastectomies. Deanna Attai, president of the American Society of Breast Surgeons, noted in the above WSJ article, “We are no longer practicing medicine in a paternalistic fashion, and at the end of the day, it is the patient’s decision. Attai continued by saying that since medicine can’t guarantee cancer won’t develop in the healthy breast, she is obligated to defer to the patient’s wishes. In the same WSJ piece, Clifford Huddis from Memorial Sloan Kettering Cancer Center observed, "The patriarchal allegation has moved 180 degrees. It used to be, ‘How dare you say my breast isn’t important and make me lose a breast to mastectomy?’ Now, decades later, the allegation is, ‘Why do you care so much? It is my breast.'" And he is right.  It is my breast. And it is my life.

Certainly, I have my emotional reasons for choosing a bilateral mastectomy at stage 4. But ultimately, I made the decision based on reviewing the medical literature. That’s right. I reviewed the medical literature, thanks to PubMed.gov and other authoritative medical sources.

In my review of the literature, I found a 2008 study published in the Annals of Surgery, Surgery Improves Survival in Stage IV Breast Cancer that indicated, “Surgery was associated with better survival outcome, even after controlling important variables such as age, race, ER and PR expression, number of metastatic sites, and presence of visceral metastases." Of the 242 patients observed and followed in this study, 188 had had a mastectomy, and they tended to do better overall.

The 2008 study goes on to state, "From a basic biology point of view, a number of studies have shown that some tumors, including breast carcinoma, can induce an immunosuppressive state in the host. By reducing the primary tumor burden in stage IV breast cancer patients, it can be hypothesized that the immune response may at least partially recover and allow the body to assist in controlling metastatic cells."

But then in 2013, at the San Antonio Breast Cancer Symposium, another study, this one from India, was announced showing that patients who received no surgical intervention had no worse survival than those who underwent mastectomy. The release of this study seemed to come out of the 2013 Breast Cancer Symposium as a final decision. It was proven definitively. There was no reason to perform mastectomies on stage 4 breast cancer patients except for palliative reasons. Yet this was just one study, and it had the exact opposite findings from the 2008 study.  Which study was correct? How are patients to decide? Typically, the goal of scientific research is to replicate findings multiple times in order to validate results, arming medical doctors with clear, evidence-based guidelines for treatment decisions. How could just a few studies on the effect of mastectomies on stage 4 breast cancer patients be the final word? There needs to be further study.

But more research of mastectomies in metastatic breast cancer patients is unlikely to happen. Metastatic breast cancer-focused research made up only 7 percent of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. And the little metastatic research that is funded is very basic.

This means that metastatic breast cancer patients often become a clinical trial of one, the findings not aggregated, not published to the world. Oncologists treating metastatic breast cancer patients do the best they can with comparatively small amounts of research data in this field. Treatment can become a bit of a guessing game, oncologists doing what they can to keep patients alive and living relatively well.

So how was I to make such a grave medical decision for myself, considering the limited resources available?  In reviewing the results of the 2008 study, I brought together this study’s results with the findings of other studies regarding tumor load and single metastases. Just like my oncologist, I worked with the information I had, and decided that decreasing the possible tumor load in my body might give me a better shot.  A shot at living longer. And that is my goal, to live longer.

I made an adult decision based on available research data in metastatic breast cancer, and based on the fact that I was disease stable and in relative good health. I requested a bilateral mastectomy. I knew it would be tough surgery, but my life is worth it. I feel like saying that with pointed pauses.

My ... life ... is ... worth ... it.

Luckily, I had chosen an oncologist who respected my choice. After hesitation, and once my cancer was clearly stable, in August 2012 she agreed to sign off on the surgery. I am grateful for her respect and her extensive medical skills.

Dr. Bernie Siegel, the author of Love, Medicine and Miracles, observed in his work with cancer patients that a group he calls the "Exceptional Patient" had the highest survival rate of all the patients he treated. The Exceptional Patients insisted on being part of treatment decisions, and were perceived as noisy and demanding. Another way to refer to these traits? Defiant.

If the medical community views my choice of a bilateral mastectomy at stage 4 as defiant, so be it. I will continue to choose medical teams who work with me and respect that treatment decisions are ultimately mine to make. I will continue to respect my medical team’s expertise — I did choose them for their skill, after all. I will continue to be demanding about my care. And I will make lots of noise. Call that defiant. Call that difficult. I call that defiantly alive.

Also published on CureToday

Tired of Cancer

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 Sharsheret, 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.

Originally published on CureToday

Ribbons Are Not a Cure

I appreciate the power of the ribbon. It is an easy-to-recognize symbol, and an important tool in promoting cancer awareness. Early detection and prevention is the key in several cancers.  My gynecologist once remarked, "Almost no one dies of cervical cancer if they get regular pap smears." And if colon cancer is caught early, during a routine colonoscopy, pre-cancerous polyps can easily be removed and debilitating progression prevented. But some cancers, like breast cancer, are lurking beasts. Breast cancer, even after successful treatment, can sit silently for years, sneaking back to penetrate bones, brain, lung, or liver — ultimately killing the unlucky victim.

Cancer survival rates are reported based on five-year survival. The five-year survival rate of breast cancer is 91 percent. The truth, though, is that 30 percent of those diagnosed at an earlier stage of breast cancer will eventually develop stage 4 metastatic breast cancer. Stage 4 breast cancer has a survival rate of zero. But in spite of the prevalence of metastatic breast cancer, the disease gets very little funding for research — roughly 7 percent of the breast cancer research investment.

The pink ribbon has done a lot of good. It has reminded people to get screened, and it has helped to raise a huge amount of funds. But at the same time, it has been used to raise money for purely corporate pockets, including the pockets of several prominent breast cancer charities. It has become a symbol of the idea that everything will be OK, breast cancer is only an annoyance, just a year out of your life, and you'll go on happily from there. The pink ribbon as a brand is a misrepresentation of the truth of breast cancer. And, most importantly, it is not a cure.

What the ribbon should represent is the need to fund medical research in order to save lives. Cancer continues to be the second leading cause of death in the U.S., behind heart disease. Lung is the greatest cancer killer, followed by breast cancer for women and prostate cancer for men, leaving colon cancer as the third greatest killer.1 All of these cancers have their own ribbons (white for lung cancer, blue for colon cancer, pink for breast cancer and light blue for prostate cancer), but still, millions die from these diseases every year.

Cuts In Medical Funding

Yet, in spite of these death rates, medical research funding in the U.S. has been cut every year since 2004, according to a 2015 study from the Journal of the American Medical Association (JAMA). Cuts in medical research funding in the U.S. has mostly hurt early-stage research, specially "proof-of-concept research," which demonstrates the feasibility and usefulness of a treatment. This means some potentially life-saving discoveries never go further, due to lack of funds. A big part of the reason for the cuts is due to the economic downturns of the early 2000s, and an increasing emphasis on national security following 9/11.

As a co-author of the JAMA study states, "If the U.S. wants to ensure that the health of its citizens is taken care of in the future, or that research in the country won’t be hindered by non-U.S. patents, the U.S. needs to increase spending in biomedical research."

The cuts continue. The Department of Defense Congressionally Directed Medical Research Program (CDMRP), a peer-reviewed research effort studying several diseases such as prostate, breast, lung and ovarian cancer, multiple sclerosis, spinal cord injury, and autism, is the next target. Sen. John McCain (R-Ariz.) attempts to cuts this program, introducing an amendment to the Senate each year.

Becoming An Advocate

What can you do to push for the restoration of funding for life-saving medical research? Certainly, the American Society of Clinical Oncology (ASCO) has made this one of their major issues, creating the ACT Network  to help regular folks like you and I become advocates. ASCO also offers a helpful guide to Being a Cancer Advocate , along with a link to the Coalition of Cancer Cooperative Group's list of advocacy organizations. The list is lengthy but obviously does not cover the entire scope of advocacy groups. For instance, metastatic breast cancer groups such as METAvivor and the Metastatic Breast Cancer Alliance are missing from this list.

But in addition to working with an advocacy group, research organizations often seek patient/consumer perspectives on proposed or ongoing research.

The DOD CDMRP has its Consumer Reviewer program where consumers read and evaluate research study applications for relevance to the consumer community's needs and concerns.

NCI's Research Advocacy program looks to incorporate the collective patient perspective into NCI research and help keep NCI research focused on patient benefits and outcomes.

The FDA Patient Representative Program allows patient representatives the opportunity to advise regarding drugs, devices, and biologics currently being considered for approval.

Social Media and Advocacy

Finally, social media has become increasingly important in healthcare, with doctors, researchers and patients from around the world joining in disease-specific Twitter chats to exchange ideas, information and experiences. Twitter communities like #BCSM (breast cancer social media) and #LCSM (lung cancer social media) hold regularly scheduled topic-centered chats.

The hashtags not only provide quick access to information, but have begun to be used as an advocacy rallying cry. Tagging a Tweet with #BCSM serves as a call to the breast cancer community, and helps bring the realities of living with cancer to the medical community's attention.

“When you see two women in the middle of the night having a real raw conversation about their chemotherapy side effects, it is very different from what you see in the office,” says Dr. Deanna Attai, clinical professor of surgery at the David Geffen School of Medicine and co-moderator of #BCSM.

In addition, cancer advocates are using social media hashtags as a call to action or to coordinate advocacy efforts. Metastatic breast cancer advocates, for instance, have begun to use the hashtags #PinkIsNotaCure and #DontIgnoreStageIV to highlight the group's under-served reality and to call for more equal funding of metastatic cancer research. Healthcare social media has become such a movement, the Symplur Hashtag Project was created to provide a taxonomy for healthcare hashtags.

Every Little Bit Helps

Whatever way you get involved, even the smallest effort will go a long way. Sign up for ASCO's ACT Network or contact your Senator or Representative directly. Talk about your cancer experience using a disease-specific hashtag on Twitter, and let the world know that we are more than just a ribbon. Apply to be a patient representative and provide invaluable patient perspective to researchers. However you choose to fight, fight. Fight for medical research funding. Fight to demand a cure. Fight to stop cancer from killing millions more worldwide. Fight so that we no longer need cancer awareness ribbons. Ribbons are not a cure.

Also published on CureToday

Cancer Calls

Originally written February 2012

There have been people who have not been in my life for many years. At least not much. My father has been 98% absent (his choice). My brother has been 70% not around (my choice). These are people I have had some difficulty interacting with.

With my father the difficulty comes from the fact that he has been absent. Totally absent.  He doesn't call, doesn't visit, the expectation is that I come to visit him and even when I do come to visit, a 6 hour drive, he won't cross the room to say hello.  He waits until we run into each other as we mingle at the family gathering.  In the over 20 years I lived in Wisconsin as a child and adult, he visited twice.  In the 11 years I've lived in Washington, DC he has never come to visit. He came to town for a conference, called me the night before to join him for dinner, and even though he was in town for a week and I invited him to my house, he never called again.

The problem has been that I have blamed myself for my father's behavior. I thought it was something I did or said that made him go away (he's been going away since I was a young child).  I thought there was something wrong with me, that if my father didn't love me, then no one would.  It has taken years and the million-time repetition of the statement "Your father blew it"  for me to realize that it was he, not me, who was broken.

With my brother the difficulty has come from his belief that the best way to live life is his way, and his insistence on lecturing me about this during almost every conversation. He means well. He cares. But it was a constant lecture.  It got tiring. I finally cut back on my contact with him.  In the last few years I've begun to initiate contact with him more often, but it's been slow.

Since I've gotten cancer though, the calls from my father and brother have been coming in weekly.  I call them Cancer Calls. My weekly Cancer Calls.  Perhaps they think I'm going to die. Who knows. But I'm actually kind of liking the conversations.

Still, the calls come at a bit of a price.  My father is the same man he was before. He hasn't changed.  He somehow manages to be absent while being present.  For example, because he's been calling me, I decided to return the favor and call him one day. I unwittingly called him during his meal time. He was in the middle of eating. He didn't really want to talk.  Instead of saying, "Can I call you later," he simply made it clear he wanted to get off the phone.  As a friend put it, "He wants to pay attention to you, but only on his terms."  Point taken.  Keep my expectations low.

And then there was his visit to my house recently.  My father has never visited me here in DC before. We've lived 6 hours away from each other for 11 years. I've tried to ask him to meet me half way. I've driven most of the way down toward him and asked him to meet me there. I've driven all the way down to visit him and he's made little effort to seek me out and speak to me while I was there.  I just want him to make an effort toward me. Anything. Even driving 1 hour to meet me would help. Even just walking across the room to say hello.  Suddenly he decides he's going to visit me at my home in DC. He's bringing his posse, two of his children (i.e., my half brother and sister Adam and Sarah).

The first date he names to visit is February 3rd.  By February 2nd I've not heard from him, so I email him. He replies, telling me he's planning to visit on February 24th instead. February 23rd I've heard nothing. I assume he'll be arriving around dinner time on Friday, February 24 since that is my chemo day and I need someone to be there to keep tabs on me after chemo.

Thursday night he emails. He tells me they will be leaving after work on Friday and will arrive at my house late Friday night. A 6 hour drive. This means they'll arrive maybe 11:00 pm or 12:00 am.  This also means I will need to wait up for them after just having had chemo and suffering from post-chemo exhaustion. The idea that the three visitors in question couldn't take the afternoon off from work to arrive earlier in the evening on the day of my chemo stupefied me.  It spoke of insensitivity and self interest, rather than of helping. It confirmed everything I'd experienced of my father before, he cared the most for himself, rather than about helping or really caring for me.

I broke down sobbing. I sobbed over the phone to my friend Lisa and after that to my friend Frank. Both said the same thing, but it was Frank who put it best. As he explained, "An asshole with a daughter who has cancer is still an asshole."  That hit home.  Both Lisa and Frank spoke to me of doing what I need in order to take care of myself, that I should ask my father to either come the next day or stay in a hotel so I could sleep.  And then I was advised to find someone else to stay with me Friday night. Lisa volunteered, God bless her.  The point was taken emphatically this time.  Keep my expectations really, really low. Do not expect anything from my father. He is the same man as always. Just do what I need in order to take care of myself. And don't do anything that would harm me such as agreeing to wait up on Friday night through post-chemo exhaustion to fit his schedule.  This was about me and my physical and mental health. I need to protect it.

My father agreed to these conditions. The posse showed up early Saturday afternoon. I spent the day with them. My brother Adam did much work around my house and when my father left, my father gave me money to help defray the cost of my treatment.  The money was greatly appreciated. My father would not help pay for my college education back in 1983 since he had decided to use the money to pay for my brother's medical school, an action that offended my brother, God bless him.  But he could help pay for my cancer.  I went to a public college which was cheap but still a good university.  At this point I figure I've gotten my Freshman year of college money back.  Thanks, Dad. It is a big help.

As they say in Alcoholics Anonymous, acceptance is the key.  If I can accept my brother and father for who they are, I can talk to them without a great deal of disappointment or pain. With my brother it's been learning that his intent is good, his follow-through sometimes a challenge, and I can end the conversation. With my father it's been learning that my father is who he is and don't get my hopes up about him or our relationship.  Still, I find it ironic that after all the years of my desperately trying to get my father to pay attention to me and fix myself and become lovable to him (I did finally give this effort up, by the way), that now that I have cancer he's acting more like the father I wanted all along; a father who calls, seems to be concerned, makes some effort towards me.

Would I have gotten cancer before this in order to develop a relationship with my father? No way in hell. That ship has sailed. My father blew it and anything that happens at this point is more about my healing myself than about us having a bond. But, hey, now that it's here, I'll take the Cancer Calls with a grain of salt.Who knows what will happen.  All my efforts will go to keeping the interactions positive and keeping me safe.

Also published on CureToday