The Gift of Family

Published December 1, 2015 by Deb Ragosta

Thanksgiving has passed and many of us spent the day as we usually do – with family.  As always, there was food, rituals, football, after-dinner naps and, for those not willing to simply watch Black Friday unfold on the 11:00 news, a trip into the dark wilderness of bargains, bargains and more bargains.  How many TVs or computers do we need?  (Not enough to get me to risk being trampled at a Walmart just so I can sue the store when I don’t get the deal I wanted because they only stocked 2 in-store and the 200 people in front of me wanted the same item!)

What Thanksgiving is supposed to be is a whole day to be thankful for all the good things in our lives – the things we take for granted, but are much better off for having.  I love the tradition of going around the Thanksgiving table and having each person say what they are thankful for.  My family gives thanks through a short prayer, but the prayer leader usually names the things we’re all thinking about anyway – good health or healing, a new baby, family members who are not present and more.  Thanksgiving is the  one day of the year that everyone loves everyone else in the family.  Even before the stores open on Black Friday, however, we’re back to being normal, dysfunctional families.  Never mind missing our family who couldn’t make it to the Thanksgiving celebration – we’re just happy we didn’t have to put up with them for a whole day!  

If we really think about it, whether we like it, or not – family is what holds us together – through shared memories and regardless of the real stories behind those memories.  Often, the stories change depending on who is telling them, which, IMHO, is part of the fun of family get-togethers.  In any case, as much as we may dread being with certain family members, we probably wouldn’t want it any other way and often express our disappointment when those family members aren’t present.

Holidays can be difficult for people dealing with chronic illness because illness doesn’t take the holidays off.  The same can be said for people dealing with grief, unemployment, financial uncertainty or anything that affects them in a negative way.  It’s a fine line we walk as we don’t want to ruin the family gathering, with depressing conversation, yet it can hurt when not one person asks “how are you?”  I’m not talking about those we see often and keep in touch with – I’m talking about those we see once or twice a year.  I used to take offense to what I perceived as their ignorance, but I’ve come to realize that it may be because those people simply don’t want to be reminded that many of their loved ones have life-altering issues – illness or otherwise and if they don’t acknowledge them, they don’t exist.

I am very open about having stage 4 breast cancer, yet I rarely (if ever) bring it up with friends or family – even on non-holidays.  I know who is comfortable talking about it because they are the ones who always ask how I’m doing and seem genuinely interested in where I am with treatment and the disease, itself.  I know who would never bring up the subject because they would rather believe that I’m fine now and always will be.  It used to hurt me when those closest to me were (and still are) often the ones who would never even make a comment that might lead to someone else in the room asking me how I’m feeling.  In the 6+ years since my stage 4 diagnosis, I have maneuvered my way through many family gatherings and am grateful if the person who leads our prayer before dinner and gives thanks to for the gift of healing.  It doesn’t always come out that way, but that’s not what matters.  We all need healing in one way or another and that simple acknowledgement is a gift, in itself.

It’s said that we can’t pick our family,  Whoever came up with that statement was a very wise and insightful person who realized that dysfunction is inherent in every family, even on the days we come together to celebrate and be thankful for our blessings.   We might not always see it that way and each family is different and unique in it’s own way.  It is our expectations of what our family members should or shouldn’t do or say that blinds us to the reality of our responsibility to accept others as they are – not how we want them to be.

In the end, however, we all are touched by the gift of family.  We just have to realize it and let go of our expectations of how our loved ones should behave.  After all – they’re probably saying or thinking the same things about us that we are about them!  

Don’t Stop Believing!


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 Gift of Friendship

Published November 15, 2015 by Deb Ragosta

For many people dealing with terminal cancer, there is hardly a day that goes by without thinking about the disease, the next oncology appointment, the success or failure of treatments (past, present and future) and anything else connected with the reality of living with a potential death sentence.  Holidays and family events can be even tougher, as it is so easy to fall into the pit of imagining a time when these special times go on without us.

Those who know me, know I am always looking for the moments where my attention can turn from the reality of having stage 4 breast cancer to the reality of the life I’ve led and lead and the blessings from that life that continue to support me and keep me lifted up.  For me, one of those blessings is the gift of friendship.

Like many others, the creation of Facebook allowed me to reconnect with friends from my past – especially those from high school.  I grew up in suburban northern New Jersey (nowhere near a turnpike exit!) and had a wonderful childhood filled with memorable experiences and connections that were meant to last forever, but somehow drifted away, as most usually do.  

A few years ago, through Facebook, I reconnected with Linda – who I first met when I sat behind her in 7th grade math class.  We were friends throughout junior and senior high school and through college.  She visited me and my husband (I had since moved to Massachusetts) in the mid-1970’s.  After that, we exchanged Christmas cards every year, but it wasn’t until July, 2011 that we met again at a mini-class reunion, held at another classmate’s house.  There was no need to play “catch-up” because it really didn’t seem like it had been at least 35 years since we last spent time together.  On that day, however, I realized that true friendship is solid, forgiving and lasts a lifetime.  

Since Linda lives in NJ and I’m in MA, we don’t see each other often, but she came to my daughter’s wedding in 2012 and we spent several days together – much of is spent laughing about the “good old days.”  When we turned 60 in 2014, I suggested we do something to celebrate and Linda (who had been to Arizona many times) suggested we go to AZ, so the planning began for our trip at the end of 2014.  Sadly, Linda’s dad passed away in December, within days of her breaking her ankle and I lost my job in November.  Since we really weren’t in the mood to celebrate what had been a tough year, we decided to postpone the trip.  We finally headed to the great southwest on October 27th.

I had been to AZ in 2008, but had never been to the Grand Canyon.  Unless you’ve been there, you can’t even begin to imagine the breathtakingly stark beauty of the Canyon.  I’m not a ”bucket-list” kind of person, but if I was, seeing the Grand Canyon would have been on the top of my list.  We spent a day in Sedona with two high school classmates – one who lives in Mesa and took us to Sedona and the other, who drove down from Las Vegas to spend the day with us.  We shopped – and shopped some more.  We ate – and ate some more and of course, we enjoyed more than a few beverages (our Facebook pages include pictorials of our journey, including the various libations we enjoyed.)  We laughed a lot and reminisced about more than a few things we did as teenagers coming of age in the late 60’s and early 70’s.  Our six-day vacation went by way too fast, but before ending our trip, we had lunch and one more cocktail at the airport, hugged and said goodbye to go to our gates to wait for our flights home.  

On the long flight, I relived the best moments of the prior six days, laughed to myself about our conversations and observations about everything from the NY Mets (they lost the World Series) to the CNBC debate and some of the comments made by the candidates – especially the ones that only someone from New Jersey could make (thank you, Chris Christie.)  What I realized, however, was that as wonderful as our vacation was, it was even better because I got a chance to get away from cancer.  I didn’t think about it, worry about it or feel sorry for myself for having it.  I hadn’t made a conscious decision to forget I have stage IV breast cancer, but it happened.  I have to think that being somewhere different and having fun with someone I love like a sister had a part in my being able to be a woman without cancer – if even for a few days.  I am more inclined, however to believe that my unexpected freedom had more to do with spending those days with one of the few friends who has known me for almost 50 years – before the ups and downs of life became reality and things didn’t always go the way I had dreamed when I was so anxious to get out and sink my teeth into the real world.  I realized that the gift of friendship is the gift that keeps on giving.  It can’t be returned or re-gifted.  It is given for a reason, is earned and can never be taken for granted.

Thank you, Linda, for the gift of your friendship.  Our paths have been very different, but those paths led us to the place we’ve been many times, many years ago – two friends sharing a drink (or two), catching up on the latest gossip (or political news) and laughing about the old guy who hit on you at the Waldorf Astoria’s Empire Room on our prom night!

Linda and I at the Grand Canyon on 10/29/2015.

Linda and I at the Grand Canyon on 10/29/2015.

Don’t Stop Believing!


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.

Taking Back October

Published October 4, 2015 by Deb Ragosta

When I was diagnosed with stage one breast cancer in 1990, October was still the month we loved for the spectacular show of colors as the leaves changed and gave us a glorious prelude to the gloom of the winter months to come.  Not long after, however, October became what many now refer to as “pinktober.”  Thanks to Nancy Brinker and “Komen for the Cure” as well as many other organizations, the 31 days of the month became less about scenery, Halloween and the 3-day Columbus Day weekend and more about all things pink.  We walked to raise money in October and bought everything from yogurt to cars to support breast cancer awareness.  Even local newspapers got into the act by printing their papers on pink paper (which, if you’ve never tried to read a newspaper printed on pink, is one of the most annoying things about Breast Cancer Awareness Month!)  

In the nineteen October’s that came and went between my initial diagnosis and my stage 4 diagnosis (made in October, 2009) it became harder and harder to think all that awareness and fundraising was really accomplishing anything.  We seemed to be no closer to a cure in October, 2009 than we were in October, 1990.  Although finding a cure always mattered to me, it mattered a whole lot more after I was diagnosed with metastatic breast cancer.  That may sound selfish, but in those first nineteen years, I became complacent because I honestly thought a cure was close at hand.  How could all those pinktobers not raise the money needed to fund the research needed to find the cure?  I was sure it was only a matter of time when all things pink and Breast Cancer Awareness Month would be something we could tell our grandchildren about because there was no longer a disease called breast cancer.  Unfortunately for the approximately 40,000 women and men who succumb to breast cancer in the United States each year, there was no cure for them – no way out and no choice but to fight the good fight.  Some never met their grandchildren and way too many didn’t survive long enough to see their own children graduate from high school.  For me, the saddest losses are those whose children are in grade school.  Believe me, I know how blessed I am.  I’ve lived long enough to watch my child grow up, graduate from high school and college; watch as she fell in love and married her soulmate and now, live in the joy of having a grandchild.  

Since I am no different than most people when it comes to wanting as much out of life as I can get, I look at the past 26 years (especially the last 6) as a gift I could never repay.  Once I was diagnosed with breast cancer, my life changed,  My life goals and wants changed.  I didn’t let the cloud of breast cancer change the woman I was, but it definitely affected (not defined) the woman I am now.  I live from blessing to blessing and the past year has brought the best gift of all into my life – my little Irish bambino – Brandon, Jr.  He looks absolutely nothing like his Italian and Lebanese relatives on his mom’s side, but when I look into his big blue eyes (those he did get from my ex-husband) I see the child who will always be a part of me and will be the best part of me that lives on, long after I’m gone.  I believe we live on in those we leave behind, but there is something about a grandchild that reinforces that for me.  I believe in the circle of life and that we never really leave those who loved and knew us because we are a part of them, forever.

Most celebrations last a day or week.  We see family, sing “Happy Birthday,” adhere to our religious or personal rituals, then move on to our day-to-day lives until the next celebration or holiday.  I was only a matter of time until the power of October as Breast Cancer Awareness Month was diminished by overload – burnt out because here we are again with no cure and people still dying. I might be looking in the wrong places, but I see much less pink this year than in year’s past. In reality, breast cancer exists every day of every month.  

In all those pinktobers, I never thought my life would be changed by one little man, born on a day that changed the meaning of a month for me and gave me a new reason to love October again.  As I celebrate my little man’s first birthday. I can now see this month for what it is for me.  I believe there are no coincidences in life.  Brandon’s birthday is October 27th and  I will be with him, other family and friends as we celebrate and watch him do the official first birthday “cake-smash.” There is one thing of which I am certain, however – there will be no pink balloons, pink cake, and his nonni (me) won’t be wearing a pink ribbon.  For me, October has finally become something more than a constant reminder that in spite of all the “feel good” pinktober vibes, breast cancer is still real and can be deadly.  It took a 10 lb. 4 oz. newborn to make me realize there is so much more to live for than waiting for the cure that may not come in time.  

Enjoy every second of the life you live and may the circle be unbroken!

Don’t Stop Believing!


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.

Paging Dr. Google

Published September 7, 2015 by Deb Ragosta

Do you remember when you discovered the internet?  For me, it was in the mid-1990’s.  I was working at a federal agency and voila – there it was – in all it’s Netscape glory.  For some reason, I discovered Yahoo and to this day, it is my search engine of choice (even though I do use the term “Google it.”)  Soon after I decided I needed to have my new-found power at home, so I became an AOL dial-up customer.  Between me and my daughter, we were on-line so much that no one could get a call through to us.  Remember busy signals?  My whole out-of-state family could have been trying to contact me to let me know someone was sick or worse, and I would have had no idea!  

It wasn’t long before I was searching the web for all sorts of things.  I was about five years out from my stage one diagnosis and the internet was like the wild, wild west.  WWW refers to the “world-wide web” but could have easily meant the “wild-wild web.”  A whole new industry was  born to create web sites and there were no (or few) regulations concerning the validity or truth of the information that was there for the reading.  Early-on, I found the Mayo Clinic and WebMD sites, but for every site that was reputable, there were dozens that touted false information, false cures and sadly – false hope.  

I was attending a breast cancer support group at the time and one woman brought in a stack of papers that included information on shark cartilage.  Her adult son had a computer and decided to help his mother by not only finding the information, but printing it out for her.  That stack was at least three inches thick and the group spent the entire meeting talking about shark cartilage.  In fact, one woman admitted she took it regularly and bought from a mail-order supplier in California.

Of course, that was then and this is now, but have things really changed?  Google “Metastatic Breast Cancer.”  I did and on the first page of results, 21 out of 34 were ads.  On the Yahoo search page, 11 out of 25 were ads with links to more ads. Do we – at any point regardless of the disease or illness, want to read ads as a way to get more information?  Even worse, however, do we want to make decisions, based on paid advertising hiding behind similar fonts and appearance, presenting the illusions they are reputable medical web sites with reality based information?  I realize the monstrosity that has become the internet must earn money for the developers (many of whom were millionaires before they finished college) and their companies but the internet has become the highway billboard of our time – always there, always on and always providing information.  I believe it preys on people who may not be as internet savvy as they should be and fall victim to inaccurate and/or biased information.  

Big pharma can afford to advertise their medications and they use the internet to push their latest and greatest FDA-approved drugs.  In their effort to sell their product, they often place the most important information about things like side effects, who qualifies for the drug and their clinical trial information concerning outcomes and efficacy to the very small print at the end of of the site.  

No one wants to be able to have an informed conversation with my oncologist more than me, but I learned a long time ago that the best way to do that is to find web sites that will give me unbiased and verified information, statistics based on that information (ideally clinical trials and research) and allows me to narrow my focus so I can make the most out of every oncologist appointment.  There are many, many drugs available for women and men with stage 4 breast cancer, but not every drug is beneficial to every patient and some drugs, although they may be used at some point in treatment, might not be the first or even second medication prescribed as we move along the “mets-mile.”  Although, the internet may be a tool I feel comfortable using, it’s not for everyone and many physicians discourage their patients from the self-diagnosis that can easily be made from reading and believing inaccurate information that is very easy to find on the Web.  My oncologist has told me many, many times over the years to stay off the internet and she still gets very flustered when I start my conversation with her by saying “according to Dr. Google…”  I’ve been with her a long time, and it’s become a bit of a joke between us – even though she is serious about me staying off the medical Web sites and even though we both know I won’t.

Even with all the wrong information on the Web, there are many reputable sites that can be very helpful to patients facing illness.  I found two sites that are excellent guides about what to look for and how to find reliable health information on the internet.  One, Finding Reliable Health Information Online is a Johns Hopkins’ site and can be found at It has great suggestions, including links to other sites, including Reliable Health Information on The Internet: Cancer Supplement.  There is also a link to information for caregivers.  Another, Evaluating Health Information, from the National Institutes of Health’s Medline Plus health information tool can be found at  It also has links to great articles about how to use the internet for medical information.  

A simple guideline for finding and using medical information found on the internet is summed up in the following from Medline Plus:

“Millions of consumers get health information from magazines, TV or the Internet. Some of the information is reliable and up to date; some is not. How can you tell the good from the bad?

First, consider the source. If you use the Web, look for an “about us” page. Check to see who runs the site: Is it a branch of the government, a university, a health organization, a hospital or a business? Focus on quality. Does the site have an editorial board? Is the information reviewed before it is posted? Be skeptical. Things that sound too good to be true often are. You want current, unbiased information based on research.”

I believe as patients, we owe it to ourselves to be equal members of our medical team.  When used correctly, the internet can be a great way to help us be informed patients who can make educated decisions about our care.  Like anything else, however, there is the right way and the wrong way to use what we find.  Next time you search for medical advice from Dr. Google – just make sure he or she has a license to use the internet to practice medicine and give what could ultimately life-altering advice.  If you page Dr. Google and he or she calls you back – well, that’s another subject for another blog!

Don’t Stop Believing!


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 Lonely Road

Published August 19, 2015 by Deb Ragosta

This blog is dedicated to the memory of Susan Pagnini.  She fought the good fight and passed away on 9/6.  She traveled her lonely road with dignity and grace.  Rest in peace, Susan.  

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!


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!


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!


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.

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