metastatic breast cancer

All posts in the metastatic breast cancer category

Living with Cancer

Published May 5, 2017 by Deb Ragosta

I was recently interviewed for this article in the June edition of Kiplinger’s Magazine. The article focuses on how much living with cancer has changed and will continue to change.

Never give up, never loose hope and don’t stop believing!

http://www.kiplinger.com/article/insurance/T027-C000-S002-living-with-cancer.html

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.

Changes

Published April 30, 2017 by Deb Ragosta

Ch-ch-changes – Pretty soon now you’re gonna get older – Time may change me

But I can’t trace time – I said that time may change me – But I can’t trace time.                                                                                                                                                – David Bowie

Of all the rock stars and actors of my generation who passed in 2016, the loss of David Bowie early in the year represented the beginning of the end of the stars of the baby boomer generation. Radio stations played his music and we were reminded of how much like a chameleon he was in the fifty or so years of his fame. One of his earliest hits, “Changes” from the 1971 album, “Hunky Dory” was written when he was young and on the road to international and eternal stardom. Even at the beginning of his career, David understood that in this life and the journey we take through it, regardless of who we are and our plan for the future, we can count on one thing – change. Change can be planned, or can be the result of things totally out of our control. How we accept and adapt to change can make the difference between having a wonderful life and one full of regrets over life choices that may have led to unplanned and or unwanted change.

Those diagnosed with stage 4 breast cancer (or any cancer) face change from the moment they hear the words, “your cancer has spread” or “you have cancer.” Some can never get past hearing those words. They are facing change, but may never be willing to actually accept it. For many, especially those diagnosed at stage 1, treatment ends and they are adamant that having cancer did not change them. Their hair grows back, the appointments end and they go back to their pre-diagnosis lives. They are proud to be survivors.

I am now in my 8th year since being diagnosed with metastatic breast cancer. I left my job at the end of 2014 and applied for Social Security Disability (more for my back condition than for the breast cancer). Leaving my job when I did was a huge and unexpected change for me. I learned from it that the anger I had as a result of the situation was because I didn’t choose that change. It was handed to me without my input. Now, however, after much thought and reflection, I know it was time to leave the job I loved because my back condition made functioning in a full-time job more and more difficult. 

Tomorrow is May 1st and I’m facing a another huge life-change. Since I’ve been collecting SSDI for 2 years, I automatically qualify for Medicare (even though I am under 65) and it goes into effect tomorrow. I’m not quite sure this was a change I would have chosen had I been given the choice. The amount of my monthly disability will decrease by the amount that will be taken out for Medicare Part B. Then, I had to find a Part D drug plan (Medicare actually picked one for me) and don’t even ask me about that damn “donut hole!” I’ll deal with that change when I get there! Luckily, my pre-Medicare health plan will automatically become my Medicare supplement, but I cringe at the thought of getting stacks of bills that I have to spend hours on the phone trying to straighten out! To paraphrase Bowie, (I must) turn and face the strange (and believe me – having Medicare is sure to be a strange change!)

The other change I am experiencing is one that I chose and one that I can change at any time. When I was first diagnosed in 1990, I was on a clinical trial for 5 years. The drug I took was tamoxifen, which, as you may know, is now the standard of care for breast cancer patients whose tumor is positive for estrogen and or progesterone receptors. I did well on the drug and credit it for keeping my cancer quiet until 2009. Although my cancer is still in my bones, only, I felt it was time to participate in another clinical study. A slight progression last year qualified me for the trial and I began the study medication 3 weeks ago. The drug is Enobosarm, but in the trial information, it is referred to at GTx-024. It’s a phase 2 study (which means it’s already passed the “safety’ test) and I was randomized to get 9 mg/day. The other group gets 18 mg/day. The purpose of the trial is to see which dosage will give the best results for patients with my type of breast cancer (estrogen positive.) I am doing the trial at Dana-Farber Cancer Institute in Boston (I am a patient at one of the DFCI satellite clinics.) If my cancer progresses while I’m on the study, I will go back to taking Ibrance. Like Ibrance before, GTx-024 is being fast-tracked by the FDA, so hopefully, this change for me will help result in another drug for other patients with stage 4 breast cancer. I like to think my trips to Boston to participate in this trial will result in a world in which my daughter and granddaughter can live without the fear of metastatic breast cancer.

Although almost twenty passed between my stage 1 and stage 4 diagnoses, I was and am determined not to let having breast cancer change the woman I am. That is different from facing and accepting the changes that come with living with a terminal disease. Yes, David – pretty soon now (we’re) gonna get older. Time may change me, but I can’t trace time. I said that time may change me, but I can’t trace time. What I can do, however is turn every change – planned and unplanned into a positive way to help me travel this journey I’m on.

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.

For Metastatic Breast Cancer Patient, DF/BWCC Milford ‘Feels Like Family’

Published January 28, 2017 by Deb Ragosta

I was recently interviewed for Dana-Farber Cancer Institute’s Insight newsletter. Many thanks to writer Saul Wisnia for bringing my story to life.

http://blog.dana-farber.org/insight/2017/01/for-metastatic-breast-cancer-patient-dfbwcc-milford-feels-like-family/

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.

It’s ALL About Time

Published October 14, 2016 by Deb Ragosta

Check out my submission for It’s About Time MBC:

Deb: It’s ALL About Time

Keeping My Head Above Water

Published September 10, 2016 by Deb Ragosta

Over the past seven years, I’ve had many people who either know or just found out I have stage IV breast cancer, say something like “You’re always so positive and upbeat. How do you do it?” My response is something like “what choice do I have?” or “what’s the point of complaining or feeling sorry for myself?”  I try not to use the “cancer card” but admit I have mentioned my disease when trying to get my point across to health insurance reps or even my condo association when trying to get it to throw salt on my sloped parking spot to melt the ice so I can actually get to my car in the winter (the bone mets has affected my back.) 

As much as I would like to think I am in total control of my feelings and reactions involving my illness, deep in my heart and mind, I know I am not. In fact, if I am totally honest with myself, the facade I wear to those around me is far from what I’m actually hiding.  It took me a while, but I was finally able to recognize and admit that I am no more immune to the worry, fear and lack of control that a cancer diagnosis brings than anyone else. Since my diagnosis and for the rest of my life, I will be trying to keep my head above water – just like everyone else who is dealing with a terminal disease.

When my bone metastasis was discovered in 2009, I spent a fair amount of time on the internet investigating stage IV breast cancer. I had no idea that even after all those “pink for a cure” years, and nearly 20 years since my stage one diagnosis, there was no cure! Once I wrapped my head around the fact my disease was now terminal, the next step was to find a site that would tell me exactly how much time I had left. The statistics I did find were downright scary, to say the least. They varied slightly, but the one that still stands out in my mind stated that only 14% of patients with stage IV breast cancer survive for five years (although, thankfully, this statistic has improved since 2009.) That one sent me reeling and searching for help. I tried a support group for metastatic breast cancer patients, but the drive to get to it was long and only four or five women attended. Having attended a general breast cancer support group for five years in the 1990’s, I didn’t think a general group would be the right fit for me and my new diagnosis. If anything, I was a walking advertisement of the fact that regardless of the amount of time that goes by after a stage one diagnosis, we are never totally free of the demon that may be growing inside. That’s a tough thought for newly diagnosed women and I didn’t want to be the bearer of bad news at a time they were looking for positive reinforcement. I found an on-line support group, BCMETS.org on which I still go to every day to read other’s posts and post my own questions or comments. Many of the women who join the group when they are first diagnosed are scared and looking for answers. Some of those go on to be the strength of the group with their knowledge, advocacy and support. We lose many – an ugly reminder of the reality of metastatic breast cancer, but there are a few women who are either nearing or have passed the 10-year mark since their diagnosis.

I started this blog in 2010 as a way to help myself come to terms with having metastatic breast cancer. I’ve facilitated several “Writing About Cancer” workshops and I’m active on Twitter (@debragosta) always pushing my #DontForgetBCMets hashtag and supporting others by spreading our message. Although I’d like to think I do these things to help others, getting involved in even a small way has helped me become a part of my new world.

I would be lying to myself to even think I’m at a point where I am at ease with my diagnosis or that I ever will be, but I have accepted that fact. There is no chance of my ever being able to forget I have stage IV breast cancer. Having to get lab work and see my oncologist every four weeks makes it impossible to put my diagnosis in a lock-box and tuck it away. Abnormal lab results can cause an anxiety attack, not to mention waiting for scan results. In the almost seven years since my stage IV diagnosis, I have been on eight different treatments, as anything perceived as a possible progression may indicate a time for a change. My breast cancer is in my bones only and I’ve never had IV chemotherapy. Once it begins to attack my organs, however, I know there will be more medication changes and I will eventually receive IV chemo. I am afraid of progression, but there are few people I can share this with because everyone around me wants to believe, as they often say, “you’ll be fine.” Sometimes, I want to scream, “NO – I won’t be fine!” Of course, then I risk being labeled as “Debby Downer.” (I’ve actually lost a very close friend because she couldn’t handle my diagnosis and I mistakenly thought I could share my fears about having BC mets with her. Strangely, losing her as a friend bothers me more than having to tip-toe around my disease with several close family members. I looked at her as a source of strength and I was wrong. That will sadden me for the rest of my life.) Although I would love to take well-intentioned advice to “put it out of my mind” or “try thinking about something else,” it’s simply not that easy. In fact, every day can be a struggle.

The reality of having metastatic breast cancer, however, is that I won’t be fine. Although my medications will change and I know the cancer will eventually spread to other parts of my body, I will continue taking one day at a time. I will live every day of the rest of my life just trying to keep my head above water.

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.

Diagnosis: Cancer

Published June 19, 2016 by Deb Ragosta

No one wants to get a cancer diagnosis. No one wants to have a loved one or friend who gets the diagnosis. For those of us who live with metastatic cancer, regardless of the type of cancer, it is another reminder that despite the progress being made with new drugs and treatments, we are still a long way from a world where cancer is no longer the devil who picks and chooses its victims without discrimination and often, without warning – ruining lives, families and hopes for the future.

Because I have lived with cancer through myself and others, I am especially sensitive when someone I know gets bad news about their cancer. I’ve lost family and friends to cancer, but it never gets easier. Although the grief eases, it never heals completely. My sadness for them can make me feel guilty because I am doing well, but I watch with awe the dignity and grace with which they face the disease that is slowly taking their lives. I wish I had the right thing to say to them or their family members. I applaud them for being so open and realistic about their illness and wonder if they realize that they may be leaving a lasting mark on another person – one that can be so empowering, it can never be measured and will never be forgotten.

One of my metsisters has been told her options are running out. She writes a blog and posts frequently on Facebook.  She will never know how much her honesty, openness and courage in the face of reality has helped me and continues to support me in my own journey with stage 4 breast cancer. She is my hero and I have told her that many times.  (Several years ago, before my mets diagnosis, one of my closest friends passed away from breast cancer. I never told her how much she taught me about staying strong in the face of devastating reality.  I will always regret not doing so.)

A much-loved family member recently finished whole brain radiation for lung cancer that spread to his brain. My heart is breaking because for many reasons, not the least of which are the wonderful childhood memories I have of spending time at his house with him, his wife and daughters. (Back in a time when families visited with their families on Sundays.) He was always so funny and always had the right thing to say to make everyone laugh. I was a “step child,” but he and his wife never treated me  any differently – even long after my mom step-dad divorced. I wish I could do something to ease her fear and sadness, but I don’t have a magic wand to make everything better.

We all deal with adversity in different ways, but there is no right way to process a cancer diagnosis. It’s different for every patient, every family member and every friend. Diagnosis: Cancer can be the worse news we will ever get, either for ourselves or for the people we love, but not letting cancer define us and our lives may make the difference between keeping our heads up, or drowning in a sea of despair. In the end, all we can do is the best we can do to stay strong and not let the cancer beast defeat us.    

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.

Our Easter Miracle

Published March 27, 2016 by Deb Ragosta

Living my life as a woman with metastatic breast cancer really isn’t much different than how my life would have been had I never had breast cancer. I was diagnosed with bone metastases 6 ½ years ago and have had no progression or spread. I know how blessed I am but I also know that the odds are pretty good that, at some point, my cancer will take off and living with it won’t be as easy. Regardless of what lies ahead for me, however, I will never let having stage 4 breast cancer turn me into a woman who misses the blessings given to me every day. Some of them, such as the births of my grandchildren are so powerful, I can embrace them without the cloud of illness blocking the rays of sunshine that are meant for me. How sad would it be if I let the fact of my disease take away the pure joy of the life I live?

At Easter, Christians celebrate the miracle of Jesus’ resurrection. It’s a time of warmth, renewal, rebirth and alleluias. Like many celebrations, both religious and secular, Easter is a family, food and fun holiday – all wrapped into a colorful basket filled with candy and delivered by the second most anticipated once-a-year memory from our childhoods – the Easter Bunny. (Where does E.Bunny get all that candy?)        

I believe that every so often, something happens that is so amazing and special, we refer to it as a “miracle.” If you’ve read my last two blogs or you are my friend on Facebook, you may know that for the last two months my pregnant daughter has been hospitalized due to complications caused by a minor car accident. She was 21 weeks pregnant when the accident happened and fought hard to hold onto her baby until at least a much more viable 28 weeks. 

Many people believe there are no such things as miracles, but I know they exist because I’ve been touched by them in my life in the form of events and things that could not be explained by logic, reason or science. Because I believe in miracles, I can recognize them and embrace them. Last Sunday, March 20th, my precious granddaughter, Natalie came into this world after 28 weeks and 2 days in utero. She weighed 2 lbs., 12 oz. and measured 15 ½ inches long. She’s in the neonatal intensive care unit and will be hospitalized for many weeks, but so far, she’s healthy and perfect in every way. At the time of the accident, physicians gave her a 50/50 chance of survival. Now, she is on her way to breathing on her own and is getting stronger every day. For me, her parents, other grandparents and extended family, little Natalie is so much more than her big brother’s little sis, her parent’s second child and her grandparents’ second grandchild. She is our Easter miracle.

Miracles can and do happen. We just have to be open to recognizing them and realizing how blessed we are to be in their paths. 

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.

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