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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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