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.

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11 comments on “Keeping My Head Above Water

  • Thanks for putting this in writing, Deb. It is so raw and honest and most of all enlightening, BCmets is such an awful disease…..not everyone has the ability to walk the path with you. I am sorry your former close friend could not bear it. Sorry for you and for her. The fact that you are able to take this experience and use it to help others (and also yourself) is moving to me. The bottom line is that sometimes life just sucks. We know that. You are not letting it stop you from living every day to the fullest. That is heroic. BTW…..time to meet for lunch, I think. 😘

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  • Oh how proud I am to not only call you my dear cousin but to also call you my dear friend as well. I am so very proud of you for a multitude of reasons. You are so strong and compassionate. Thank you for always being here for me. I honestly do not know what I would ever do without you in my life. Again THANK YOU my sweetheart! So good talking today. P.S. Remember when I told you I probably wasn’t going to remember to tell you everything before we hung up the phone…yep…remembered 2 things I forgot to tell you…I’ll call you again soon! I LOVE you my Deb xoxo ❤ ❤ ❤

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  • You read my mind. I have 2,5 years since bone mets diagnose. Having recently lost two women from the FB support group with BC stage IV (mets in brain and lungs), I keep my fingers gross and hope to mets stay in bones as long as possible. Having BC mets in bones is the safest way to have mets, I think. Well, sorry about my english, I’m not good at it, especially in writing. I have blog too, where I keep my friends and supporters updated about my condition, but it is in estonian. Even I am in little support group in FB, I don’t know anyone with BC bone mets. So it is always interesting read about other lifers storys.

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    • It is so hard to lose the women we meet. I went to a luncheon about 9 months after my mets diagnosis and 6 of the 8 women there are no longer with us. It was heartbreaking for me to lose women I met and kept in touch with. All we can do is live one day at a time and hope for a cure. I was at a MBC conference at Dana-Farber Cancer Institute in Boston last Saturday and there are many new drugs in the pipeline for all types of MBC.

      I would love to read your blog! Writing is so freeing and has helped me become a woman living with MBC, but never defined by it!

      Stay strong,
      Deb

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  • Oh thank you. You are the person who finally put into words exactly how I am feeling. Need to relate to someone? I’m the one. Diagnosed with Type IV breast cancer in 1984, having a mastectomy, radiation and chemo, I went merrily on my way until my hip began to give me pain in 2014 and a diagnosis of MBC! So here I am, scans every 6 months, blood work every month and monthly visits to my oncologist. Please keep on blogging and again thank you.

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    • Hi, Barbara,
      Thank you for taking the time to comment. We metsters are a small but very special group of women (and men) who need to support each other as we face each challenge. I am on the same scan.lab.oncologist schedule. Please keep reading and stay strong!
      Deb

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  • Hi Deb….Well, I’m sitting here as a just diagnosed “metser”. I was a survivor of Stage two breast cancer for four years. I was just recently diagnosed last week of the cancer spreading to my hip as I have been having excruciating pain. It got to a point the pain is so bad I can barely walk. I was only in the hospital overnight and will be seeing my oncologist this week to prepare for treatment. He hasn’t told me yet how terminal this disease is. I never knew it’s not curable. I was in a bad head on collision and suffered fractures and a broken hand so I thought my hip pain was associated with that. Than this news came! I’m mad, frightened, jealous, etc. Actually I truly don’t know how I feel right now. Only that I’m in pain and confused. Please keep me in your prayers. I need women who can help me understand all there is to know about mbc. Thank you and God Bless. Donna

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    • Hi, Donna,
      Sorry to hear that you’ve become a member of the club no one wants to join. I totally understand where you are coming from because I was there. I was fine until I injured my back on a trampoline and an x-ray for that uncovered the bone mets on my spine. That was 7 years ago and I’m still standing with bone mets only. First – please don’t look at the statistics that can be found all over the internet. They are scary and often based on old information.I had myself dead and buried in 18 months based on what I was reading! Second – you have bone mets only, which, if there is a good mets, bone mets is it. I know women who have lived 10+ years with bone mets only! Third – you didn’t mention what type of breast cancer you have (ER+/-, HER-/+, etc) Depending on that, there are many, many drugs available (especially for ER+ bc) and many in the peipeline. In my 7 years, I’ve been on 4 different treatments and I’ve yet to have IV chemo. Lastly – check out bcmets.org. It’s an on-line support group for women (and a few men) with stage 4 bc. Everyone understands and there are many long-term survivors (over 5 years). They women know more about our cancer than many doctors and you can ask any question, share your fears and concerns, or just introduce yourself. We do lose women, which is tough, but the support is incredible and everyone understands because we have been where you are. I encourage you to check it out. There is nothing fancy about the site and you can even read the posts and archives without actually becoming a member of the group. If you read a post from “Deb in MA” that’s me.

      Please know that I am praying for you. Getting our diagnosis is tough and not many of us personally know other women with stage 4 breast cancer. Family and friends try to be supportive, but they really don’t completely know or understand what we are going through. I even lost one of my best friends because she couldn’t be a friend to someone with a terminal disease. Your anger and fear will pass and you will get to a place of acceptance of your “new normal.” Every one of us have been where you are! Again, I encourage you to check out bcmets.org. If you introduce yourself, you will get responses from several women telling you exactly what I’ve written in this reply. I know it’s hard to realize this now, but you are not alone.

      Please keep me posted. My email is djrags54@verizon.net. Please feel free to email me any time.

      God bless and stay strong,
      Deb

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