The Lonely Road

Published August 19, 2015 by Deb Ragosta

I am a woman who is very open about having metastatic breast cancer.  I always have been and always will be.  The support I get from others matters to me and lifts me up every day.  Consequently, because I show no outward signs of being ill (especially because I’ve had no hair loss) people always comment about how great I look or what a great attitude I have.  I often get the cringe-worthy “you’ll be fine” comment that used to make me respond with my patented rant about the reality of having stage IV breast cancer.  (Although I didn’t, I wanted to scream “hey – I won’t be fine – I have a terminal disease!” ) Now, I use a gentler approach to educate those who make that comment, as I understand why people would assume I’ll be fine.  Many people actually believe there is a cure for breast cancer.  (Regardless of what you may think of “Koman for the Cure,” a huge downside to seeing the pink ribbon everywhere was that it unintentionally created the false impression to many that there is a cure for breast cancer.)  Often, they simply don’t realize  – being diagnosed with metastatic breast cancer is a death sentence.  

I’ve learned, however that regardless of how open and sharing I am about being a woman living with  breast cancer, being that woman isn’t always easy.   For me (and for others, I suspect) having a terminal disease can put us on a very lonely road.  We may even put on the “happy face” as a sign of our strength.  Support groups (both on-line and traditional) and closed Facebook groups allow us to be ourselves without putting on that “happy face.”  I’ve known many women with stage IV breast cancer (mostly through the on-line sites) who are no longer with us.  After the initial shock, of being diagnosed, most are usually able to deal with the hills and valleys of living with metastatic breast cancer and this becomes evident through their posts.  Our lives settle into a pattern of medical appointments, scans and treatments – all intended to delay for as long as possible, the inevitable progression.  As the posters come to the end, however, they often release themselves of the “happy face” syndrome and free themselves of having to be strong for the people around them and also for themselves.  Throughout it all, however, there is no escaping reality and that reality, from beginning to end, puts us on a very lonely road.

I can be in a crowd of strangers, and feel alone.  I can be at a family gathering, and feel alone.  I can be getting dressed to start my day, and feel alone.  I can be having a great day, and feel alone.  I can be wearing my “happy face” and feel alone. Since my mets diagnosis in late 2009, I’ve  had moments of loneliness that have grabbed me and brought me to tears. Early on, I went to a social worker at my cancer center, but after one visit, I realized that regardless of her education and experience, she couldn’t help me because she really had no idea what I was talking about,  She had never traveled the same lonely road.  

When nothing helped, I decided that possibly, I could help myself by helping others.  I found a program, “Writing About Cancer” and was able to get a grant to cover the licensing fee.  The workshop is free to participants and is held at the cancer center at which I am treated.  It’s open to anyone with any type of cancer.  I do the assignments with the participants.  For those four, 2-hour sessions, I am able to hear others’ stories, share their and my written thoughts and always realize that regardless of the type of cancer, or the stage, we all travel the lonely road.  I’ve facilitated the workshop many times and have made friends with some of the participants.  A few have passed away and I feel honored to have known them and shared our life stories with each other.  

In the end, however, the road we travel as part of our life journey belongs only to us. While we like to think we control every aspect of every step on that road, there are always unexpected detours.  Some bring us joy and help make our lives happy beyond anything we could ever have imagined.  Some, however make us lose our way and forces us to stop until we figure out which direction will lead us to where we want to be.  For me, having metastatic breast cancer often takes away my ability to decide which road to take.  Whether I like it or not, whether I fight it with all my energy and common sense and even though I have the tools I need to control most of my life – I can’t control metastatic breast cancer.   It is that reality leaves me stuck in the mud of the lonely road.   

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

My Mea Culpa

Published August 1, 2015 by Deb Ragosta

First, let me apologize for using statistics in my last post (The Cancer Words) that, although I got them from what many of us consider a reputable source, turned out to be questionable to one reader who took exception to them and the source from which they came.  One of her grievances was that bloggers need to be more careful about the statistical information we post.  I agree it’s wrong to perpetuate inaccurate information, but there is a wide variation in this particular statistic, and not only on the many breast cancer blogs.  The commenter is a physician with a recent history of breast cancer (although she did not indicate the stage of her initial diagnosis.)  She did write that none of her physicians agreed with the statistic in question.

The last thing I want to do with my blog is to share information that is or even may be incorrect, nor do I want my readers to feel the need to quote scientific journals in an effort to prove me wrong.  My blog is intended to be personal observations of my journey with metastatic breast cancer and reflections I’ve made during that journey.  I am not a clinician or scientist, never presented myself as either and will, in future blogs, refrain from using statistics.

For me, once I was diagnosed at stage IV, the statistic concerning how many people diagnosed with breast cancer who will be later restaged to stage IV stopped mattering.  I am a lifer and simply want to share my thoughts with those who choose to read my blog.  I do welcome your comments and will always approve every one (except for obvious spam) and make every effort to reply.  Should you want to read the comments I’ve referenced in this post and my responses to them, please check out the comments section and the end of The Cancer Words.   Thank you to all my followers!

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

The Cancer Words

Published July 13, 2015 by Deb Ragosta

Ever since I was old enough to know what having cancer could mean, and well before my own 1990 diagnosis, there have been an assortment of what I call “the cancer words” that were and are used to describe cancer, a person’s status with it or an oncologist’s “real” opinion of a patient’s odds after telling his or her patient the most dreaded words of all – “you have cancer.”

My earliest recollection of a famous person openly talking about having cancer was the Hollywood legend, John Wayne, on the Tonight Show, talking about his lung cancer diagnosis.  Wayne’s image was that of a larger-than-life tough guy who had starred in many westerns – always as the hero and always surviving to live for and fight another day.  I wasn’t a fan of his movies, but what I remember about him was that he always referred to his disease as the “BIG C.”  John Wayne didn’t have cancer, he had the BIG C and surely, the big movie star would beat the hell out of that “C.”  In the end, regardless of what he called it, even John Wayne was no match for cancer and the disease took him in 1979.

Of course, our world is much different now than it was in the 1970s.  President Nixon’s 1971 “War on Cancer” was a hopeful moment in time that has long past.  In fact, some sponsors of the legislation predicted a cure by 1976. Today, the internet and social media have changed the way we get our information and how we use that information.  Oddly, however, the words we use when talking about cancer haven’t changed and still have different meanings under different circumstances to different people.  For me, the most glaring of these is the word “cure.”  As a woman with breast cancer, I’ve done my share of walking, talking and raising money “for the cure.”  Although I know differently now, prior to my stage 4 diagnosis, I actually thought there was a cure for breast cancer.  After all – what was done with all that money raised?  I wasn’t alone in my ignorance.  Following my diagnosis, and my realization there was no cure for my disease, I engaged in a Facebook argument with a friend of a friend who posted that there was definitely a cure for breast cancer because one of her friends was diagnosed, took a pill for a few years and now she is cured.  As angry as that made me, I had to admit (to myself, at least) that I had the same misunderstanding of the how the word “cure” is used when referring to different cancers.  The reality is that, according to information provided by the Metastatic Breast Cancer Network, 20% to 30% of patients diagnosed at an earlier breast cancer stage eventually move on to stage 4.  Does that mean the other 70 to 80% are cured, or do they simply die from something other than cancer before the cancer resurfaces?   There is no time limit on making the jump to stage 4.  Up to ten percent are diagnosed with metastatic breast cancer from the get-go and others can live 20 or more years after their stage 1 diagnosis before they become one of the lifers.  Still, the word “cure” is tossed around by oncologists and medical teams, unintentionally giving many what turns out to be false hope.

Are you in “remission?” is a question I get asked often.  I guess because I have my hair and look healthy, people who know I have metastatic breast cancer assume I must be in remission.  Many people don’t know that stage 4 is terminal and they think being in remission is a good thing because they equate it with being cured.  Remission is a word used frequently in the medical community, especially as the word “cure” slowly falls out of favor because it doesn’t accurately reflect most patients’ relationships with their cancers.  According to WebMD, there are two types of remission – partial and complete.

“Partial remission means the cancer is still there, but your tumor has gotten smaller. . .  Some doctors tell patients to think of their cancer as “chronic,” like heart disease. It’s something you will need to continue to check. If you’re in partial remission, it may mean you can take a break from treatment as long as the cancer doesn’t begin to grow again.  Complete remission means that tests, physical exams, and scans show that all signs of your cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” That doesn’t mean you are cured.

For us in the metastatic breast cancer community, being told we are “NED” is like getting manna from heaven.  We know cancer is still in our bodies, but our scans and tumor markers are normal, therefore, we can “dance with NED.”  We may never hear what we really want to hear (“you are cured”) but as long as we are NED, we are as close to being cured as we will ever be.  The hardest part is explaining to others that just because there is no evidence of cancer, it doesn’t mean it’s not there.

There are many words used when talking about cancer.  Some have changed since Nixon’s War on Cancer, but regardless of the words we use, it’s not the words that are the message.  The way cancer is treated has come a long way and more people with cancer are living longer lives.  In spite of new medications and protocols – cancer is still a killer, and that should be the message.  What has changed, is that we aren’t afraid to say the words that are part of every cancer patient’s dictionary.  However, we can’t begin to come to terms with the reality of our own cancer until we can understand the true meaning of the cancer words.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

Finding the Support We Need

Published June 22, 2015 by Deb Ragosta

Very few of us can go through life without some sort of support system.  Whether we are dealing with metastatic breast cancer, other diseases, divorces, substance abuse, raising our children or just living one day to the next, having support can be the difference between struggling and flourishing.  We are responsible for ourselves, but we are human and sometimes need others to help us deal with whatever it is we are experiencing.  For some, acknowledging the need for support would somehow leave them feeling embarrassed and diminished.  For others, embracing support is one of the ways they get through rough patches in life.  Some of us have amazing family and friends who offer us the support we need, when we need it – often without our asking for it, but just because they know we need it.  For others, there is no one who can give them support – often because those who are the closest to them may not be the ones who can offer the best support because they are too close to the situation and their support is wrapped in their own emotional connection.  Sometimes, it’s just easier to share with (and accept support from) strangers because they hear what we want them to hear without the “noise” of relationships, connected experiences (both positive and negative) or other extraneous perceptions.

After I was first diagnosed at stage 1 in 1990, I attended a local breast cancer support group for almost 5 years.  It was a very active group, facilitated by an oncology nurse and/or social worker.  It met monthly and it was rare for there to be less than 20 women in attendance.  Some women came once or twice and never returned.  Others came regularly every month.  Along the way, we lost women who had become our friends.  Even now, all these years later, I remember the middle-aged Loretta, who had 15 malignant  lymph nodes at her original diagnosis and was sailing along until, years later, the cancer spread and was aggressive.  She passed away shortly thereafter.  I remember Amy, who found a lump when she was pregnant.  Her physician dismissed it as benign tissue caused by the hormonal changes of pregnancy.  When she finally had a biopsy, the cancer had spread throughout her body.  Her child was five when she passed.  Both she and Loretta came to the group for support, but gave us so much more support than we could ever give them.  Each faced the reality of her diagnosis with grace and dignity that lifted me and inspired me to be a woman who would never be defined by breast cancer.  Their stories were powerful reminders to me that not every woman (or man) gets diagnosed at stage 1, and not everyone has treatment and walks away to live and enjoy the rest of her or his life as a breast cancer survivor.

Today, support groups have shifted (like most things in our world) to virtual, or on-line formats.  The internet allows us to be more informed and has given us the ability to gain as much knowledge as we chose to have at any point from pre-diagnosis through treatment and beyond.  There are statistics to scare us and statistics to reassure us.  The more advanced our cancer, the scarier the statistics.  “In-person” support groups exist, but many have fewer and fewer attendees as more cancer patients turn to the internet.   Prior to having the internet, many people attended support groups to get information about their disease,  Today, of course, the internet provides that information instantly, just for the asking (or Googling.)  The latest incarnation of the support group involves “calling in” and participating via phone and/or a venue such as Skype.  Although the way we get our information continues to change, I still believe in the power of traditional groups because seeing and hearing how others deal with their issues can’t be totally replaced by simply reading posts or connecting to a person on the other side of a computer screen.  Emotions are best shared and understood with a caring look, touch or hug – all possible only in the physical presence of others.

Little did I know when I was first diagnosed that my choice to attend a support group would give me so many coping tools that I use every day as a woman now living with metastatic breast cancer.  Thank you Loretta, Amy and every woman I met during those early days of my breast cancer journey.  You still support this “lifer” in ways I cannot even begin to thank you for.

Don’t Stop Believing!

Deb

May you realize that even in your darkest moments, something wonderful and amazing can happen that will change your life and remind you to never stop living for those rays of light that will take away the dark.

Don’t Forget BC Mets!

Published May 20, 2015 by Deb Ragosta

I was diagnosed with stage 1 breast cancer in 1990.  I was 35 and my only child was in kindergarten.  I wanted to see her grow up – go to proms, graduate from high school and college, meet the love of her life and dance at her wedding.  In 2009, out of nowhere and totally unexpected, an x-ray for a back injury revealed the breast cancer had metastasized to my bones.  In the time it took for my PCP to call me with the news, one part of my journey ended while another began.  As part of my coming to terms with this new chapter in my life, I started this blog.  While my intentions were good, my last entry was made in 2012 – shortly before my daughter’s wedding at which, of course, I danced, danced and danced some more – the last on my original wish list of things I wanted to live long enough to see or do.

Although I let the blog fall by the wayside, the fact I’ve continued paying to keep the Web site supports my theory that subconsciously, I knew I would resurrect it someday.   That day is here.  My daughter and son-in-law became parents in October and I’m now the nonni of my precious grandson, Brandon, Jr.  I take great joy in my belief that life really is like a circle and I am part of a circle that now has another piece.  The fact that part of me will live on in my daughter and in my grandson gives me great comfort and peace as I walk this journey with metastatic breast cancer.  I like to think we become stars in the sky – shining forever through those we leave behind.

I’ve done a lot of thinking in the past 5 ½ years – not only about having stage 4 breast cancer, but of how I can best advocate for and teach others about the disease.  I was as ignorant as many others thinking all those walks and buying everything from yogurt to cars for the “cure” surely meant there was a cure.  The reality is the dirty little secret of all that pink and fundraising is that shockingly little of the money raised actually goes to research to cure stage 4 breast cancer and that despite over 25 years of “pinktobers,” there are still more than 40,000 women and men dying from breast cancer in the U.S. every year.  That number has not changed considerably since breast cancer became the cause du jour.

I belong to an on-line support group for women and men (although no men post) with stage 4 breast cancer.  I can’t even count how many women have died since I joined the group in 2010.  Women of all ages – young and old, many with small children, many with adult children and grandchildren, many married, many single.  Metastatic breast cancer does not discriminate.  As sad as many of the posts are, the truly heartbreaking ones are those written by women who are saying goodbye to the group.  They are at the end of their journeys and write one last post – usually to thank the group for its virtual support and to say goodbye.  Some believe in heaven or some sort of after-life and tell us they will see us on the other side.  Some don’t believe there is more and their good-byes are achingly sad and so, so final.  In the end, many are simply done with the job of working at staying ahead of the demon we cannot catch, let alone beat.  They fought the good fight and are done – in a way, freeing themselves to let go.  I think the shock of knowing there is nothing else to try comes as a relief to some who cannot imagine having to try one more treatment – complete with side effects that are often worse than they ever imagined.  They are not giving up.  They are just giving in to the reality of metastatic breast cancer – the fate that is inescapable.

Recently, tweets such as #MetsMonday and #DontIgnoreStageIV have been tweeted  to help get the word out to the Twittosphere that metastatic breast cancer is real, is terminal and still affects up to 30% of women and men originally diagnosed at an earlier stage.  It needs to be addressed with awareness and most importantly – funding for research.   I am new to the world of Twitter, but I’ve come up with another tweet, #DontForgetBCMets, so on Mondays, I will tweet #DontForgetBCMets.  Please help me spread the word, remember my metsisters and brothers for whom the journey has ended and honor those who walk each day like it’s the best day of their life – regardless of what may come tomorrow.

Don’t Stop Believing!

Deb

Taking Care of a Loved One with Cancer

Published March 23, 2013 by Deb Ragosta

A few weeks ago, I received an email from Cameron, who read my post and asked if he could send me something he had written to post on my blog.  His wife, Heather, doesn’t have metastatic breast cancer.  She has mesothelioma.  I have to admit, I didn’t know much about the disease, except that I’d seen commercials from law firms looking for families who wanted to sue because their loved ones had the disease.

As you will see, once you read Cameron’s post, he is a devoted husband and father and has a story that deserves to be shared.  Not enough credit is given to the caregivers – those who walk the walk with us and are with us on our good days, as well as our bad.

Here is Cameron and Heather’s story.  I am honored to share it with you:

November 21, 2005 is a day my wife Heather and I will never forget. On that day our lives went from spending our time doting on our three month-old daughter, Lily, to fighting my wife’s diagnosis of malignant pleural mesothelioma. My wife, Heather, was in shock and disbelief. I learned before we even left the doctor’s office that I would have to start making decisions to help her through this. When the doctor laid out our treatment options, Heather stared silently, in shock and disbelief. I quickly made the decision to visit David Sugarbaker, a doctor in Boston who specialized in mesothelioma, and away we went into our life of chaos.

Heather was no longer able to work and I was only able to work part time in order to juggle the doctor’s appointments, travel arrangements and caring for our daughter. I soon became overwhelmed financially, physically, and emotionally. Would my wife die from this disease and leave me alone broke and with a young daughter? I spent many times bawling my eyes out and wondering if it would ever end.   

Luckily we had help. If anyone offers help of any kind when you are sick or a caregiver to someone else, take it.  I learned the hard way that there is no room for pride when a loved one’s life is on the line. We received friendly ears to listen and money to help us through the tight times. Family, friends and even complete strangers reminded us that we were not alone and gave us fewer things to worry about.

It was hard. Taking care of my wife while keeping the household running was the most stressful, exhausting, and uncertain time that I have ever experienced. There are no vacation days and you must keep going because you are the one that your family is depending on. You have to give yourself permission to be angry and scared and have bad days. Don’t give up hope and use every resource to pick up again and keep going.

It has now been seven years since that diagnosis, and my wife is cancer free. Heather went through surgery, radiation, and chemotherapy but she managed to beat this awful disease. Heather’s ordeal reminded me that time is precious and inspired me to go back to school. I studied Information Technology and graduated with high honors. I was the graduation speaker of my class, and Heather and Lily were in the audience to cheer me on. During Heather’s fight with mesothelioma, I never even thought that this could be my life. Never give up hope and always believe in yourself, and you can accomplish amazing things. 

Enjoying the Gifts of Life in Spite of Metastatic Breast Cancer

Published May 4, 2012 by Deb Ragosta

It’s been a while since I’ve posted, but the reason for my silence is all good!  My 28-year old daughter (and only child) is getting married on June 2nd and life has been a lot busier lately.  She stresses out easily and my main role has been that of chief “voice of reason” as she suffers anxiety over every little wedding detail!

One of the things I do to help me in my own journey with metastatic breast cancer is to facilitate a 4-week workshop at the cancer center at which I am treated.  The program is called “Writing About Cancer” and includes 8 topics.  The group (including myself) writes about 2 topics each week.  Regardless of how many times I facilitate the workshop, I always come away from it with a cathartic realization about my own journey with breast cancer.

Following our writing about a specific topic, each person reads what they have written and the group discusses it.  Last week, I wrote about being diagnosed with stage 1 breast cancer at age 35 when my daughter was 5 years old and in kindergarten.  I never looked at my survival in terms of 5 years, 10 years, etc., etc.  My goal was to see my daughter graduate from high school.  Of course, after the first 5, then 10 years, that thought  came into my brain less and less as I was moving along with life and the fear of recurrence diminished with each passing year.  In 2002, I was asked to say a few words at our hospital’s Cancer Survivor Day (I work in the public relations department).  Of course I said yes then gave absolutely no thought to what I was going to say.  When the microphone was handed to me, I told a totally off-the-cuff story about how my daughter was 5 when I was diagnosed and all I wanted was to see her graduate from high school.  Then it hit me – she was graduating that Saturday – just 3 days after the Cancer Survivor’s event at which I was speaking.  It came out of my mouth like a revelation.  Everyone started clapping and there wasn’t a dry eye in the house.  Even my oncologist came to me for a teary-eyed hug!

Writing about and relating this story all these years later in the writing workshop left me with an incredible sense of thankfulness and joy.  Here I am, now dealing with stage 4 breast cancer, but  in a few weeks, I will be dancing at my daughter’s wedding!  How lucky am I?  Yes I have metastatic breast cancer, but so many of my metsisters will not live to see their children graduate from high school, let alone see them get married.  Just a few weeks ago, we lost Alicia from CT.  I met her only once, but she had 3 young daughters who she cherished.  Alicia will not see them graduate from high school.  She won’t be dancing at their weddings.

The on-line support group to which I belong (BCMETS.ORG) has post after post about women just like Alicia.  Some have young children and aggressive disease.  Some are single moms.  Some wonder how they will pay the bills until their disability payments start.  Some wonder if they will see their children even begin high school, let alone graduate.  The stories are heartbreaking and only the hardest hearted would not be moved.  The stories bring out feelings of anger, sadness and helplessness that I struggle with for many reasons, not the least of which is that I know how blessed I am that regardless of where my breast cancer journey takes me going forward, I have been able to be a part of my child’s life – something many women are robbed of by this insidious disease.

I can be sad over many things metastatic breast cancer may rob from me in the future, but for me, for now, I have been given an amazing and wonderful gift.  In spite of what may lie ahead for me.  I will dance at my daughter’s wedding!

Don’t Stop Believing!

Deb

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