metastatic breast cancer

All posts in the metastatic breast cancer category

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

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

Dear Nancy,

Published February 1, 2012 by Deb Ragosta

I see that your organization, “Komen for the Cure” is getting a little bad press today.  In fact, I just heard the news on CNN that you’ve pulled funding to Planned Parenthood – funding that was used to pay for mammograms for women who are underinsured, uninsured or otherwise cannot afford to pay for them.  It’s all over Facebook as well, and I understand your Facebook page is being bombarded by comments coming in from all over the country.  As we all know, you started the organization in 1982 to honor your late sister, Susan Komen, who passed away as a result of metastatic breast cancer.  Cheers to you and your rich pals for being so pro-active in trying to find that cure.  After all, that’s why millions are donated each year – so you can do just that.

It seems as though you take quite a large salary (and you are already very wealthy) and have even held positions in George W. Bush’s administration.  Why should it surprise anyone that you have caved to pressure from your wealthy right-wing pals to pull funding for free mammograms performed at Planned Parenthood  facilities.  As I see it, the problem is that Planned Parenthood also performs abortions, and that is the basis of the pressure to which you succumbed.  Abortion is and probably always will be a political hot button, but it has nothing to do with breast cancer and pulling funding for mammograms that just happen to be offered by the same organization that provides abortions makes no sense, even to those who have bought into your “savior of the masses from the horrors of breast cancer” image that you certainly do nothing to deny.

As for me, as a woman with metastatic breast cancer, I, along with many of my metsisters and brothers, stopped listening to your message a long time ago.  You claim to be “for the cure” yet you give less than 5% of the millions raised each year to research for metastatic breast cancer.  Now, you are pulling funding for mammograms because you don’t agree with the politics of the organization providing the mammograms.  Thanks to you, breast cancer awareness has come a long way since 1982, but now it’s time for you to stop talking the talk and start putting the money raised by your organization towards really making a difference (and I certainly don’t mean that we need a cancer-friendly perfume or to see your logo on 1 million more retail items.)

My message to you is simple:  Restore funding for mammograms (even if it means writing a check to Planned Parenthood) AND substantially increase funding for metastatic breast cancer research.  The rest is, quite frankly, nothing more than a feel-good marketing ploy that is sending the wrong message.  Komen can only be “for the cure” when the funds raised from children selling lemonade, people walking, swimming and buying everything from yogurt to cars really does go to finding the cure.  Nancy, you can make a real difference and the last thing you need is the ugly publicity being generated by pulling funds for free mammograms.

Sincerely,

Deb Ragosta

PS:  Don’t Stop Believing!

Another New Year

Published December 28, 2011 by Deb Ragosta

For many, the last few weeks have probably been filled with shopping, wrapping, planning menus and running what seems like an endless list of errands.  Regardless of your beliefs, or how you celebrate, there’s always the “day after” when life snaps back into place and all the busyness seems to come to a screeching halt as we crawl toward the new year.

Each year, as we count down the days and minutes to midnight of the start of another year, thoughts of resolutions, new beginnings, and even happy endings bounce around in our heads to replace shopping lists and last-minute errands that clogged our brains just a few days ago.  Just as the holidays come and go each year, the start of a new year comes with things we can be absolutely certain about (the sun will rise and set each day), things we can be relatively certain about (more than 40,000 women and men will die from breast cancer) and things we are less certain about (a cure will be found to finally end the scourge of breast cancer.)  Like any other year, 2012 will bring us the mundane and the profound – the joy and the sadness and, of course – the hope and despair that comes with the reality of metastatic breast cancer.

I’ve never been much of a New Year’s Eve reveller and certainly never one to make resolutions I knew I couldn’t keep.  That’s ok though, because I really don’t have any bad habits I have to get rid of.  I’ve never smoked, I try to exercise (when my back allows) and after being overweight for most of my adult life, a stint at Weight Watcher’s about 10 years ago helped me take the extra pounds off that I’ve managed to keep off (and, no, I didn’t start WW in January – I started the week of July 4th.)  Why is it, then, that these days before we begin a new year tend to bring a cloak of sadness that hovers over me, ready to cover me in tears.  Long ago (pre-mets) I came to the conclusion that I am sad for the lost opportunities – things I let get by me, never realizing that those opportunities may never come my way again.

Having metastatic breast cancer has taught me a lot about myself, my life and my ability to look to the future and to the promise of a new year filled with the hope that maybe 2012 will bring researchers the answers, once and for all time, to finally find a cure for breast cancer.  As long as I have that hope, I can face the new year, for I have to believe that one of these years, we will be rejoicing a new year without the reality of metastatic breast cancer hanging over us.

May 2012 bring us closer to the cure.  May you all find joy in even the everyday, seemingly meaningless moments of your lives, may you find peace within yourselves and may each day bring a reason to smile!

Happy 2012!

Don’t Stop Believing

Deb

The 2011 San Antonio Breast Cancer Symposium

Published December 8, 2011 by Deb Ragosta

Instead of writing my thoughts this week, I thought I would share two interesting articles about announcements made at this week’s Breast Cancer Symposium.  After reading the articles, I thought, once again – small steps.  I don’t want another 6 months.  I want a long life!  After re-thinking my initial reaction, however, I’ve changed my opinion.  I now look at what seems like small steps to be part of the walkway that will eventually find a cure for breast cancer.  Of course, I would like that cure to come in time to benefit me and my metsisters and brothers, but if it takes another generation, it will benefit our children and our children’s children and I want my daughter to be able to live without the fear of  breast cancer hanging over her head,

The first article is from the Wall Street Journal.  The second is an Associate Press article posted on Yahoo and sent to me by a friend.

http://tinyurl.com/79pl2oo

http://tinyurl.com/cmb2p8w

Don’t Stop Believing

Deb

Giving Thanks

Published November 22, 2011 by Deb Ragosta

As I thought about what I wanted to write this week, my mind kept going back to the fact that in a few days, another Thanksgiving will be upon us.  The holiday means different things to different people, especially as we grow up and become adults.  For some, Thanksgiving means planning a day to spend with family or friends and either travelling to them or entertaining them in our homes.  For some, Thanksgiving means scouring the ads and planning one’s Black Friday strategy.  For some, however, it means facing the first major holiday without a loved one.  Most of us have been there and many probably agree that the thought of having that empty seat at the Thanksgiving table casts a sad pall over the thought of not only the Thanksgiving celebration, but of the coming weeks as we head towards other holidays.

In the past few months, we have lost several women who were regular posters on bcmets.org.  We miss them, not only because they are no longer a part of our group, but because they represent what lies ahead for us.  One day, the “sad news” will be about our own passing, posted by a grieving loved one or another poster who knew us or came across our obituary.  Although it is morbidity that might be unimaginable to some – for women and men with metastatic breast cancer, it is reality.

This will be my third Thanksgiving and holiday season since my own mets diagnosis (20 years following my stage 1 diagnosis).  I’ve now had more than 2 years to think about what I could possibly give thanks for.  To be honest, my first Thanksgiving following my diagnosis in 2009 was filled with sadness and uncertainty.  I looked around the room at the big family gathering and pictured future gatherings without me.  The fact that my ex mother-in-law, who I adored, had died from lung cancer earlier in the year didn’t help.  In 2010, I was invited to my daughter’s boyfriend’s parents’ home.  Since I hardly knew them, most of the day was filled with small talk and honestly, with the exception of my daughter, not having to be surrounded by family actually helped me because I didn’t have to spend the day trying to show how good I was doing to relatives who saw me once or twice a year and expected me to be sick because I have advanced cancer.  I still wasn’t ready to “give thanks,” though.  As we headed to this year’s holidays, I decided that I was ready to give thanks, because, in reality, I do have many things to be thankful for.

Of course, I am thankful that my cancer hasn’t spread.  It’s still in my back and has made no move.  (Passing the 2-year mark in October was huge for me!)  Once again, I will be spending Thanksgiving with the family who are now my daughter’s future in-laws, as she and her wonderful fiancé will be marrying in June, 2012 – yet another thing to be thankful for.  I am thankful for those who have passed, as they left me a very powerful message about facing metastatic breast cancer with dignity and grace – never giving in to the part of cancer that can so easily strip our soul and spirit.  Most of all, however, I am thankful for my family, friends, co-workers and medical team.  Without their continued support, I could not walk my walk.  They lift me in the moments I need them and are always willing to laugh with me on the good days and cry with me on the bad.  I am incredibly lucky to have them in my life and although it’s taken me more than two years, I can finally say I give thanks for my wonderful life and can once again wish others a “Happy Thanksgiving.”

May God Bless you on this Thanksgiving, and always – on the good days and the bad!

Don’t Stop Believing!

Deb

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