Susan
"Every day, every month and every year I get to be with my family is a gift."
I am no longer able to hold a full-time job. I’m on round the clock pain medication for side effects from my meds and from nerve damage due to radiation.
Time is a gift. Every day, every month and every year I get to be with my family is a gift. Vacations are precious and it’s all about making memories so my family can look back and remember happy times we had.
I find strength and motivation in my son, who’s 16, and in helping educate others on Metastatic Breast Cancer. My son is in the last 2 years of high school and is preparing for college. These are important years and I want to see him fulfill his goals. The more people I can reach and educate on the need for more research funding the more I feel I’m in control.
Everyone is at risk. Men and women alike. The more people who are educated beyond ‘awareness’, beyond pink ribbons and beyond the false information, the more change is likely. Early detection is not a cure and everyone diagnosed with Breast Cancer is at risk of having it return. 30% will be diagnosed with Metastatic disease. The more people know these facts the sooner bigger changes can happen.
I hope to be part of changing how the world views metastatic disease. Until we understand the mechanism that causes metastatic disease we will continue to have 40,290 people die every year.
Be vigilant in your care. Stay informed of what’s available to use in your treatment. Use Palliative care to help manage pain and side effects and most importantly, don’t ignore your feelings. It’s OK to feel sadness, anger, fear and anxiety. No one can live in a perpetual state of happiness. Just don’t let the negative consume you.
It’s not a journey…it’s my life. I’ve learned that I can’t sit around having a pity party. I need to set an example for my son that illness doesn’t define who you are. I’m not a victim, I’m just someone that has an incurable illness.
The awareness that needs to be raised is that we need more funding for research. It’s that simple. I’m part of a grassroots group, MetUp. We hope to do for Metastatic breast cancer that ActUp did for AIDS. We need to focus on those dying every day and get mad enough to stop it.
We need to get our lawmakers involved in the conversation. We need them to support funding research. The DOD has a huge research program and a larger piece of that pie needs to go to understanding metastatic disease. We need to give the researchers the funds to do their work. They want to do it but they need funding for new medications, new clinical trials to extend lives.
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