Friday, October 20, 2017

The Pink Sisterhood

I attended a screening of a breast cancer documentary last night because, you know, it's breast cancer awareness month. I was there for the discussion after the film to offer a different perspective, because my breast cancer is Stage IV. 

Now I figured the audience would be mostly women (it was). But I did not expect the audience to be dressed in pink. All of them. Dressed in pink. Pink shirts. Pink socks. Pink sweaters. Pink purses. All of it pink. A sea of pink.  I'd never seen anything like it before. 

And considering how much pink was already going on in the room, I found it odd that the women in the room were clamoring for even more pink. "I have t-shirts!" the event organizer called across the room,  holding a bright pink t-shirt aloft, the word survivor emblazoned on the back. And the women surged forward to grab their pink reward. They were a pack of pink breast cancer sisterhood, a sorority you can only enter after enduring a horrifying and hellish hazing period. 

But I am not a member of the pink sisterhood. My cancer has spread. I will not be a survivor, and survivorship is a cornerstone of membership in the breast cancer sorority. The reality is that roughly 30% of the pink sisters in the room last night will join my sad sorority, the cancer coming back into a distant organ, taking the poor woman through a new and never-ending hazing routine.  But as of last night, the women in the room had all been through breast cancer, their treatment was done, they were moving on with their lives.  They were survivors. They were members of the pink survivor team.

I do not blame those women for loving pink, for holding on to the hope that the cancer will never return. I certainly wish I could be a member of their group. I hate the color pink, but I would have been happy to wear fuchsia to be a part of the crowd. It's just I never got to experience living in the world of "your cancer's gone, you can go about your life now." By the time I was first diagnosed, my breast cancer had already spread to my liver (HER2-positive cancer is an aggressive and fast-growing disease).  Any way you cut it, pink was never meant to be my color after all.

The one wish, though, is that people would quit assuming that, because I say I have breast cancer, I will automatically survive and insist to me I will survive as well. Not everyone survives, and it's a sad reminder of that fact when the person I'm speaking to insists otherwise. Everybody survives breast cancer is a line sold by clever marketing people who want us all to believe that cancer, if caught early, never comes back, so please, buy these pink things and we'll give a little of the money to awareness campaigns, and then we'll pocket the rest. Breast cancer can come back years after first diagnosis. And breast cancer can and still does kill an estimated 40,000 women and men in the US every year.

So do me a favor. Do not assume that just because my boobs are gone and I've had chemo, that I'm happy about it and moving on with my life.  I live in the world of cancer permanently. Cancer will most likely kill me, unless that proverbial bus hits me first.  Go ahead and wear your own pink. Just try not to rub the pink in my face as well.  This is hard enough already.


Tuesday, March 21, 2017

Still Here

Last week a right-to-die advocacy organization contacted me.  I am terminally ill (Stage IV breast cancer) and had testified before the District of Columbia Council two years prior in support of a physician assisted dying law in the District.  A Washington Post reporter had emailed the organization, hoping to use a quote from my testimony, and the reporter wanted to know if I was still alive and if still lived in Washington, DC;  in other words, would I be able to take advantage of assisted death legislation.

Now I understand the practicality of these questions.  In two years I could have easily moved and, considering the capricious nature of metastatic cancer, I could just have easily died.  Still, seeing someone ask about my continued existence in an email was jarring and, in the end, soul shaking.  Was I still alive?

My response was short and to the point.

"Yes, I am still alive.  Yes. I still live in Washington, DC."

The organization's representative seemed thrown by my response, and tried to back pedal on the question of my being alive. "Of course you're still alive," he replied.  After the email exchange, I went back to my work day.  I was fine. The impact of the exchange didn't fully hit me until that evening.  In the middle of cooking dinner with my husband I stated, "Someone asked me if I was still alive today."  And then I left the room, sat down on the couch, and began to sob.

No one had ever so directly asked me this question before.  I live knowing that my health could quickly change, I could be dead in weeks or months. But I also live pushing that thought away just so I can get through my every day. I've discovered that I cannot function if my mind is filled with the reality of my impending death.

Many people ask me about my health. Thank God it doesn't happen too often, because frankly, when someone asks me how my health is what they're really asking is, How bad is the cancer?  Where has it spread?  How long do you have to live?  What is interesting is that even though I have been asked this many times in the five years since my diagnosis, I am still shocked when it is asked.  As soon as the health question floats into the air, I know everything I need to know about the person asking. She does not see me, she sees cancer. To the questioner, I am merely a disease, not long for this world.  A short timer.  The questioner does not want to know about me, the disease is the focus.  If the person really cared about me, she would ask "How are you," the emphasis on the word you.  How are you, a living, breathing, feeling person?

And I still struggle with how to respond to the how's your health question. Often I redirect the conversation to the questioner's health.  How is your health?  How is your heart?  How is your blood pressure, that family history of stroke.  I am hoping to illustrate that we all have health issues, we all will die.  I am not special in dying.  I just know the most likely cause of my own death. Even this approach is apparently not clear enough.  I still get the health question.  I want people to stop asking about my health. I want them to ask about me.  I am not walking death. Perhaps I simply need to state this more directly, become a haranguing educator on how to speak to the diagnosed.  

But nope.  I've decided the next time I'm asked about my health, I will reply, "Why? Do you know something I don't."   Get an uncomfortable laugh. Make them feel guilty. Why not?  The strategy worked for my mother and her mother before her. I come from a long family tradition of making people shut the hell up through guilt.

But still, there is the continuing perception that I am dying.  My close friends do not make this mistake. They know, in the tradition of Valerie Harper who was diagnosed with metastatic lung cancer several years ago and is also still here, that I will live until I die.  Since my diagnosis, many people I know have died before me. The healthy 50-something man who died of a sudden, massive heart attack. The seemingly healthy 50-something woman who was outwardly perfectly fit but was really harboring Stage IV colon cancer which she would not get checked, and was dead a week after diagnosis.  The incredibly fit 40-something man who exercised and ate right, but was dead two weeks after they found the lung cancer.  The sweet, kind, fit man who apparently suffered from crippling depression that drove him to take his own life.  I have outlived them all, and yet, I have had the diagnosis, the "bad health" for longer.

The point is there is no way to tell who will live and who will die and when.  Outward signs of health do not mean an escape from death. It only means you get to pretend death is far, far down the road. After the above gentlemen died of a heart attack, I had a conversation with another woman with metastatic breast cancer. While we both acknowledged the sadness of the gentleman's early demise, we also expressed envy. "How lucky he was to die quickly and not know it was coming."  It's the knowing that is the challenge.  Unlike most people, I know death is coming and I know it could come at any time.  But also unlike most people, because I know it's coming, I vehemently appreciate every day I live past my supposed expiration date.  That sense of gratitude eluded me when I was able to pretend I was not dying. In dying, I ironically found life.

Meanwhile, here is my tip for checking to see if a terminally ill person is still alive.  Send the email or make the call, and when the person responds or picks up the phone, assume she is alive.  If you do ask the person if she is still alive after hearing her voice, do not be surprised if she then goes on to point out your impending death. Because, believe me, thinking about your death sure as heck ain't much fun, and you don't want to hear it.

Friday, December 30, 2016

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