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 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

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

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