Stage4Lifer: Artifacts of Generational Caregiving and Metastatic Cancer

For #Stage4Lifer, Hear My Voice Volunteer Felicia Johnson blogs about her family history with cancer, and going from caregiver to the one needing care after a metastatic diagnosis.


feliciaThe initial shock of being diagnosed with metastatic breast cancer closed down my mind. I heard the words my surgeon said, “You have metastatic breast cancer”. It was as if I placed my hand on a hot pot without wearing an oven mitt. I left my doctor’s office trying to assimilate the information she had given me. I digress just for one moment to paint a picture.  I understood the word “cancer”.

You see, I have lived within the boundaries of three generations of cancer.  I did not experience childhood like most girls. There was no excitement about playing with dolls. There were no pajama parties.  I did not dream of my first date and kiss. Why? At the age of 14, I experienced my first role as a caregiver.  My sister was diagnosed with brain cancer at nine years old in 1974. I was responsible for visiting her along with my parents to play and comfort her as best I knew how. Unfortunately, she succumbed to the disease.

At that point, my cancer-related skill box was open for training. The cancer continued to grow and affect the women in my family like an uncontrollable weed. There have been a total of eleven women diagnosed with breast cancer in my family. It was vicious, mean and came in the form of metastatic breast cancer. At the age of 15, I was sitting in the hospital waiting for my mother to come out of breast surgery. Before I knew it, I was attending cancer-related doctor’s appointments for my aunts, sisters and cousins who had been diagnosed with breast cancer. As the years passed by, I learned how to listen, take notes and ask important questions.

What I did not realize was the depth of what it meant to be a caregiver. It was not like today. There are services that support families taking care of terminally ill loved ones. I had on the job training. It started with a diagnosis. Next, I moved to family and psychosocial concerns, surgeries, palliative care, and hospice. Was all that training to be wasted? No, you see, I was diagnosed with metastatic breast cancer in 2003.

As a mentioned earlier, I understood the word “cancer”. It was the descriptive adjective “Metastatic” attached to cancer that tossed me into moving traffic. That word silenced my mind like the darkness of a midnight moon. I did not know what to say to my doctor. I was pushed suddenly and uncontrollably on to a cancer conveyer belt. It took control of my life. However, there was also new a challenge; I was the patient. My family and friends were now taking care of me.

My body started to melt down with every imaginable side effect. I was the one whose biological machine revolted against the toxicity of chemo. I was the one going through the harshness of side effects. I was the one who could not walk more than three steps without needing to rest. . I was the one faced with the meaning of cancer and excruciating  pain. My list could go on for ten pages, but I will stop here. Yes, I was dragged inside the cocoon of metastatic breast cancer.  But I had a secret weapon. The outer shell of my silk cocoon was woven with my family and faith. My family had the care giving experience and faith to help bring me through. In closing, I continue to utilize all the caregiving skills I gained from my generational teachers. And when I think about the word N.E.D.  I say the following:

N: Navigating my way through each day because it is a blessing.

E: Even though I don’t have a diamond ring, my life is priceless. I am going to share it with my family, friends and others.

D: Don’t know about tomorrow. But, I can sing about today. I have danced in the cancer caregiving ring for more than thirty years. No matter what the outcome, faith is my main dance partner. And that’s my artifact of generational care giving.


You’ve heard Felicia’s voice. Raise yours. Join #Stage4Lifer on Instagram and Twitter.

Felicia Johnson has been living with metastatic breast cancer since 2003. The complexity of cancer has taught her to take a holistic approach to fighting it through education, medical science, faith and nutrition. Breast cancer has led her to become proactive in sharing about breast health. She serves as a breast cancer leader at a faith-based organization. She is also a cancer buddy at a major healthcare facility in Philadelphia. She enjoys learning about breast cancer research and new treatments options. In her free time, she likes writing and spending time with her family. She believes, “My purpose is to help others with their breast cancer battle.”

#Stage4Lifer: A Plane No One Wants to Board

Hear My Voice Volunteer Kristi Stone, on being her own healthcare advocate, educating others and enjoying life to the fullest. Join the #Stage4Lifer campaign with Kristi!


I am one of the faces of metastatic breast cancer. I’m Kristi Stone,  a 46-year-old wife and mother of two daughters. Describing what MBC is like is akin to waiting in line to board a plane that no one wants to board. I was diagnosed at age 44, on Christmas Day, 2014, with de novo (or initial diagnosis with) metastatic, or stage 4, breast cancer that spread to my bones, neck to knees, and innumerable lesions in my liver.  Being told treatment would not likely work and that I had about 30 days to live, was the biggest shock of my life. I received the news in such a cold, heartless manner at an emergency room, by a doctor who simply gave the news and then just walked away.

I researched and found an oncologist, sure that the doctor at the ER had to be wrong. I wish that had been the news I got,  but my initial  diagnosis was correct. My new oncologist told me the same thing. I ran out of that office, fell into some sticker bushes crying as hard as I ever have. I went home and tried to gather my thoughts. I went to see my oncologist and asked if we could at least try treatment. We decided to try. I’m very thankful that I did!

I was barely able to walk. I was using a wheelchair most of the time, because I had become so weak. I’ve felt better with every month I’ve been on the prescribed oral chemo. The treatment has been very effective for me. I have three brain mets,  but they are very small and stay controlled.

I enjoy life as much as possible, finding joy in the simplest things. I try to help others through my advocacy work, reminding folks that a metastatic breast cancer diagnosis can happen to anyone, at any age, even if you live a healthy lifestyle. And that research is our best weapon against it.

My goal is to live with MBC the best I can, continuing a quality life as long as possible. My priorities are spending time with family and friends and pushing for more research for this deadly breast cancer, so that this disease stops claiming thousands of lives a year. I want out of this line, and I don’t want to board that MBC plane. I don’t want to see anyone else have to get on either.

In the meantime,  I will enjoy each day I’m fortunate enough to have, and have the time of my life at every opportunity! Living, laughing and loving.


You heard Kristi’s voice. Raise yours. Join #Stage4Lifer on Twitter and Instagram.

Stage4Lifer: Menopause and MBC at Age 40 – The Journey I Didn’t Choose

Young people can be diagnosed with metastatic breast cancer. For Stage4Lifer, Dionna Koval writes about learning she had metastasis to her bones at age 42.


I had my first mammogram on my 40th birthday and continued to do them each year after that. In April 2014, months after my annual mammogram, I just finished moving into a new home and started having pain under my right breast. I thought I pulled a muscle from moving and ignored the pain. By the next day the pain was so unbearable that I couldn’t breathe.

My mother finally convinced me to go to the emergency room. Once there they did a series of tests, including a CT scan. By mistake the tech did the scan higher up on my breast; thank God she did because that’s how my lump was found – along with 3 broken ribs. My last mammogram was done in September of the prior year so I wasn’t that worried but in the back of my head I kept thinking what if. I was sent to do another mammogram and ultrasound. It was then that the radiologist told me he was positive it was cancer without even doing a biopsy. I had the biopsy done, and the wait for the results drove me nuts. Sure enough on April 25 I was told I had breast cancer.

Hearing the words, “You have cancer,” at 42 was like a punch in the gut, especially since I had my mammograms regularly. My life came to a halt. I have a son and am divorced. I wondered how I was I going to get through all this. Little did I know, I hadn’t even heard the worst news.


By that Monday I was contemplating whether I was getting a single or double mastectomy. Before I could make a decision, my surgeon called to tell me that we weren’t doing the surgery anymore; my doctors learned that the cancer had progressed to my bones – I was officially diagnosed with stage IV breast cancer. Once again I was devastated. Many thoughts ran through my head. I thought my diagnosis meant I was going to die soon.

I met with my oncologist the following Monday and couldn’t even hear what she was saying. It was tough for me to wrap my head around all of the terms being used and the news overall. The type of cancer I have is ER/PR-positive. My healthcare team and I decided upon a treatment plan and I started that day. It consists of three injections of Faslodex and Lupron. Here I am, in my early 40s, and put straight into menopause. I was told my cancer would respond best to this treatment, and I’ve been on it for the last 2 years.

At the beginning of my journey, I realized that I didn’t even know a lot about this cancer and neither did my family and friends. Why is it that something this serious was never talked about? How could I have lived without knowing more about MBC? Now that I have this diagnosis, how long do I have left? This cancer will eventually kill me but I’m not ready for that. I need answers, I need a cure! I’m living my life as I always have done but with more of a mission, if that makes sense. Since I don’t have the answers I need or want I will not let anything stop me from enjoying time with my son, family, and friends.

Looking back to the beginning of my nightmare, I can’t imagine doing any of this alone. I learned a lot about myself and people that I thought were friends. My biggest support system has been my parents. I live with them now because there are times I need help. I feel secure and safe knowing I have them in my corner.

My biggest fear is dying soon and not seeing my son graduate from high school, start college, get married, have children. I’m sure I’m not the only one who feels this way. I’m there for every milestone my son has. I don’t care how sick I am or how much I’m hurting – I will never miss time with him.

This journey was not one I would ever have chosen but this journey has made me stronger than ever. This journey allowed me to meet other strong women like myself. This journey will help me educate women who don’t know what MBC is. This journey motivates me to raise my voice for for those that need to understand our need for a cure. I might not be able to change the world as quickly as I’d like, but I will make a change. I plan on saving my own life, to be there for and with my son. This journey has not taken the fight out of me. I will live my life with determination, purpose and most of all love. Negativity doesn’t belong in my life and “no, I can’t” isn’t something I say. This journey may have chosen me but I will make this journey the best one yet!

You heard Dionna’s voice. Raise yours. Join #Stage4Lifer on social media.

Dionna Koval is 44 years old and was diagnosed with breast cancer on April 25, 2014. She later learned she had stage IV disease that spread to her bones. She’s lived with the disease for more than two years. She completed LBBC’s Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program training this past April. When she’s not educating others about MBC, she enjoys spending time with her 14-year-old son, family and friends.

#Stage4Lifer: Men Get Metastatic Breast Cancer, Too

Men have breasts, too, and they can get metastatic breast cancer. Roger Grates shared his story with our friends at the Male Breast Cancer Coalition in August. He wrote this follow-up for the #Stage4Lifer campaign.

Roger-Grates41_750W.jpgI have battled male breast cancer three times over the last 18 years.  When I finished my last radiation treatment six months ago, I was told by my oncologist the cancer had metastasized to my lung.  Facing a more imminent mortality was my first challenge. The new normal of living with oxygen, exhaustion and depression is difficult.

My second challenge was to work with my oncologist on a treatment plan.  Shortly after I started Lupron, the initial treatment, I developed atrial fibrillation. Since Lupron cannot be taken with any anti-arrhythmic drug, we were back to square one.  My doctor prescribed Faslodex and Ibrance, a new regimen that has proven to slow the progress of metastatic breast cancer.  Fortunately, the University of Michigan has an oncology/cardiology program to work with patients like me and I have been successfully treated for the atrial fibrillation.

Accessing the drug Ibrance presented the third challenge.  The drug costs $10,000.00 per month.  Since the FDA said Ibrance is for postmenopausal women, my insurance company denied payment.  The University of Michigan stepped forward and helped me get financial support from Pfizer and eventually from my insurance company.

Accessing all available resources is so important.  My wife has been a diligent caregiver as well as constantly researching the Internet for other resources.  When she discovered and contacted the Male Breast Cancer Coalition, they stepped forward immediately to offer support.  Thankfully, our family and friends have surrounded us with emotional support, which helps us get through each day.


You’ve heard Roger’s voice. Raise yours with #Stage4Lifer.


If you’re a man diagnosed with breast cancer, check out these resources:

Male Breast Cancer Coalition website.

Breast Cancer inFocus: Breast Cancer in Men


#Stage4Lifer: “I Am Not What Happened to Me”

Stage IV, or metastatic, breast cancer is breast cancer that has spread beyond the breast to other parts of the body. For #Stage4Lifer, Hear My Voice Volunteer April Hines reflects on her diagnosis with the disease and how it’s changed her life.

“I am not what happened to me. I am what I choose to become.”
-Carl Jung


April and her husband at Abram’s Falls on the Appalachian Trail. It’s one of the places they hiked for their honeymoon.

Originally diagnosed with early stage breast cancer in 2012 at age 31, I endured every treatment available to me (surgery, chemotherapy, radiation and hormonal therapy; then later ovarian suppression and an aromatase inhibitor). After it all ended, I thought myself to be cancer-free. I moved on to choosing what I dreamed my life would become: getting married to the love of my life in October 2015, spending my honeymoon climbing mountains and planning for the future overall.

Shortly after returning home, I went in for a routine exam at my primary care physician’s office. The end result of this routine exam and everything that came after it  was this: getting diagnosed with metastatic breast cancer (MBC) in January 2016. I now have breast cancer in my bones and liver.

I think the most important lesson I’ve learned thus far is that there is no right way to cope. The impact of learning you have metastatic breast cancer doesn’t stop affecting you on the day you learn the news. It takes time to work through the grieving process.

I can tell you that it’s not advisable to Google statistics. And, it’s okay to have the same expectation for your family and friends. I choose to spend my life creating amazing moments and not focusing on how many celebrations I might have left.

After absorbing my reality – there is no cure for metastatic breast cancer – and having my world turned upside down, I felt terribly alone. I felt that I’d failed my loved ones; that somehow people would think that I did something wrong. I found there were people in my life that weren’t able to handle my diagnosis – people who are no longer in my life. While I threw myself into advocacy educating the public on my disease, I found that others weren’t comfortable hearing my truth. I finally realized that it’s not my job to make someone feel better about this disease. This isn’t a pretty pink ribbon and we don’t have to romanticize our stories to make others feel better. I try to ask my friends that are uncomfortable hearing about this disease to remember that it’s even more difficult to live with it, especially with no support.


April and her husband enjoying her mom’s chicken noodle soup on the day she was diagnosed with stage IV breast cancer. She says, “If our parents hadn’t helped us out that day and the days that followed, I’m not sure how we would’ve managed.”

There are days where I’m enveloped with the “what if” thoughts. I am reminded by those who’ve been going through this for a while that it takes time to work through the grieving process. Some days I feel “normal” and can focus on advocacy work. Other times, stress means I need to step away from social media and advocacy for a period of time. I’ve found it important to repeat psychiatrist Carl Jung’s quote to myself over and over. It’s important that I remember that I’m still me; this is just me learning to live with metastatic breast cancer.

If there can be anything positive about this diagnosis, it’s the support. The silver linings are friendships with all the wonderful women and men who are MBC patients and those I’ve met through nonprofit organizations such as Living Beyond Breast Cancer, METAvivor and MET UP. Today there are so many social media connections that can be made globally on platforms such as Facebook, Twitter and Instagram.

When I first posted that I had been diagnosed with metastatic breast cancer in a breast cancer support group on Facebook, someone pointed me to online groups for MBC. Through those support groups, I found out about Living Beyond Breast Cancer’s Thriving Together Metastatic Breast Cancer Conference and thankfully my husband and I were able to attend in April 2016.

I can’t tell you in words how incredibly powerful it was to make these connections with people in the same situation as us. We celebrate each other’s victories as they’re our own victories, and we suffer the defeats the same way –  together.

And, I believe one day we’ll achieve what I feel is the ultimate dream – better treatment options and improved quality of life for metastatic cancer patients, turning this terminal disease into a chronic condition. Until then, in the words of Dylan Thomas, “I’ll not go gently into the night; I’ll rage against the dying of the light.”

You’ve heard April’s voice. Raise your voice with #Stage4Lifer.

See April takeover our Instagram account @livingbeyondbc this Wednesday, September 26!

April Hines was originally diagnosed with stage IIB breast cancer in January 2012. She was later diagnosed with stage IV breast cancer on January 22, 2016. When she and her husband are not fighting breast cancer, they’re taking care of their dogs, hiking and kayaking near their home in the Chattanooga, Tennessee, area, and spending as much time as possible with their two nieces and nephew.

Stage4Lifer: Navigating Life After Hearing “You Have Metastatic Breast Cancer”

For #Stage4Lifer, Hear My Voice Volunteer Katy McRae reflects on her journey from diagnosis with metastatic breast cancer to the present.

img_4764It happened on a normal afternoon in mid-August 2009, when I got a call at work from my oncologist’s office. The call was to inform me that my blood results from a regular check-up were suspicious and might indicate a return of the breast cancer that had plagued me 4 1/2 years earlier. I groped for a chair while trying to assimilate what the person on the other end of the phone told me. I tried to suppress the sensation of dread that overpowered my body.

I listened in disbelief but understood what I had to do. I had my orders: undergo a PET scan to establish if I had had a recurrence. Within a few days I had a call from my oncologist to confirm that I had, indeed, metastatic breast cancer (MBC) in my bones.

My immediate reaction was one of power, “OK, how do I cure this? What do we need to do? Should I have a bone marrow transplant?” My doctor repeated on three occasions, while I babbled on, that MBC is an incurable disease.

I was completed horrified and deflated and realized with mounting dread that my life from this moment would never again be the same. Deep in my being I realized that this was always a possibility (About 20% to 30% of people first diagnosed with early-stage breast cancer will develop metastatic disease) but I made a conscious decision after my primary cancer treatment not to dwell on that fact.

I am a pro-active person so the idea of not being able to “cure/fight” this disease was harrowing to contemplate. I felt isolated in my misery and it wasn’t until I talked with an LBBC Breast Cancer Helpline Volunteer that I saw a glimmer of hope for my future. I realized that, even though I would never again be cancer-free, I might be able to have some time to still enjoy life.

Through the 2016 Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program, I have met some powerful women (and one man) who suffer from MBC and they are truly inspiring to the newly-diagnosed.

Katy Stage4Lifer photo 1.jpg

Over the course of the following months I tried to reconcile my idea of what life had been to how it was going to be, and knew that for me to be happy I had to rely solely on my own resources. This was something that only I could do. The best medical care was available to me and that was a first and crucial fact that was apparent – my body would be taken care of; my spirit would be mine to manage.

Being diagnosed with MBC is like being thrown overseas to a country whose language you do not speak.I quickly learned that for my survival and some sense of ownership of my own body I would need to educate myself in the language and science of this hostile place. I relied, of course, on my oncologist’s advice but I also did my own research.

I had originally been ER/PR-positive when diagnosed with early-stage breast cancer in 2005 but I did not respond well to the aromatase inhibitor treatment that I was on in the beginning of my treatment with MBC. I chose to have a bone biopsy and learned that I was in fact HER2-positive – a curse and a blessing. A curse because it is a very aggressive cancer and a blessing because in recent years, there has been much progress in developing great targeted therapies that are quite successful in slowing the progression of this type of cancer.

I developed a strategy over time that has worked well for me. I can say that I am truly happy and enjoying life. I changed how I look at life. I don’t do the “what if, why me?” thing. It is what it is; the world owes me nothing and thinking that it does creates only self-pity and negativity, so I don’t go there. I have learned to actively change my train of thought when the dream of a cancer-free existence floats into my brain. The big picture has been replaced by being in, and relishing, the present moment.

I have been to my children’s weddings and multiple graduations. I have enjoyed since my diagnosis seven Christmases, birthdays, hundreds of beautiful walks, visits to see my family and friends, and all the wonderful events that are a part of everyday life. At some point in the acceptance of my new reality I sensed that cancer now lives with ME, whereas, in the early days, I lived with IT.

I feel truly blessed to have had the gift of the last few years. I am beyond the “average” survival time for MBC and feel that I am exactly where I am supposed to be, that I am somehow “connected”. Life is good!!!


You heard Katy’s voice. Raise yours! Join the #Stage4Lifer campaign.

Katy McRae has lived and worked in many countries, including Ireland, England, Saudi Arabia, Germany and the United States. She and her husband Steve began their last relocation 8 years ago, when they came from Germany to live in Frederick, Maryland. Her favorite things to do are hosting her kids (anytime, anywhere), crafting (especially knitting and felting), being outside (walking or cycling), reading, traveling, raising awareness and funding for MBC, and debating (“Anyone, any time, over anything – I’m Irish!” Katy says.)

Stage4Lifer: Stories That Get to the Heart of Living With Metastatic Breast Cancer

Catherine L. Ormerod, MSS, MLSP, discusses our new #Stage4Lifer campaign and its importance as we head into Breast Cancer Awareness Month.


Hear Their Voices. Raise Yours.

Over the next five days we will introduce you to an amazing group of women and men who will share their experiences living with metastatic breast cancer in our campaign, #Stage4Lifer. These women and men are members of our 2016 Hear My Voice program and work with us to help increase awareness of what Stage 4 breast cancer is and how it’s different.

They will be sharing stories that get to the heart of living with Stage 4 breast cancer – a breast cancer that very few understand and has no cure. They will share how Stage 4 disease has and has not changed them, challenged them, and why they have chosen to educate others by speaking their truths.


Catherine Ormerod with 2015 Hear My Voice Volunteers Ishiuan Hargrove, Sarita Jordan and Adrian McClenney at our 2015 metastatic breast cancer conference. Ishiuan, Sarita and Adrian passed away this year.

The name of this social media campaign is #Stage4Lifer. Admittedly a provocative title, it is a name inspired by a young Texas mother named Holley Kitchen, who created a simple, yet powerful video about how her breast cancer was different than early-stage breast cancer. She told people she would never be cured; instead she would live with the disease the best she could. That video went viral and her story educated and inspired hundreds of thousands. Holley called herself a cancer lifer. Holley died from Stage 4 breast cancer last year.

In honor of the approximate 155,000 American women and men living with Stage 4 breast cancer and the many more who have passed, we want to continue what Holley started and share more stories and deepen the understanding.

Here’s how you can help. From September 26 – 30, we will be sharing personal stories, facts and figures to help educate the public about Stage 4 breast cancer. Please share your story on Facebook, Twitter and Instagram using #Stage4Lifer. Share and retweet our messages with others. Share the stories and facts, especially with those who believe breast cancer has a cure – it surely does not.

We cannot lead a campaign on the stories of those living with Stage 4 breast cancer, without recognizing the many incredible people who have passed away from this disease. We dedicate this campaign to members of our Hear My Voice program, who passed away this past year from metastatic breast cancer:

Adrian McClenney, Beth Montavlo, Heidi Dunnigan, Ishiuan Hargrove, Jean Burns, Jill Cohen, Jill Tyson, Marcia Taylor, Sarita Jordan.

We carry on the work they began. Join us by educating others, understanding and working toward a cure.

Learn more about #Stage4Lifer on LBBC.ORG.

Catherine L. Ormerod is the vice president of programs and partnerships at Living Beyond Breast Cancer.