I have written three posts in the month of October and left them all as incomplete drafts. Mainly because I have had so much “life” going on and secondly because I couldn’t quite put a finger on what I wanted to say.
First off, I am feeling great. I have been enjoying the changing fall colors on my trail runs, enjoying my continued quest to live as clean and healthy as possible, spending full days at the Hope Scarves office laughing and planning with our amazing staff and volunteers, watching the boys play soccer, a trip to Michigan to visit family & date nights with Jay. I took a trip to the beach with friends where I paddle boarded and sailed in the Atlantic Ocean. I even got flagged in by the lifeguard because a shark was following me! Talk about feeling alive!
I am learning to accept sadness and fear along with happiness. Allowing myself to laugh and joke around while also giving myself permission to be scared and sad. It is a roller coaster. It is hard, but we are doing it. I have monthly injections of xgeva to strengthen my bones and take a daily medication called an Aromatase Inhibitor. Both have some side effects along with the lack of estrogen in my body since removing my ovaries (medically induced menopause). But, all are completely manageable and I am so thankful they appear to be keeping the cancer from growing at this point. I will have a PET scan in December (every 3 months) to continue to closely monitor the situation. I feel very blessed that my body is responding to treatment and that I have more time to live my amazing life and not be dominated by cancer.
And, so as life as a stage 4 metastatic patient becomes the “new normal” I reflect on October. A month set aside for Breast Cancer Awareness – a month that one would think that I – one of the 150,000 women with the most aggressive and deadly form of the disease would feel rallied behind and comforted. However, this month has been incredibly hard. Mainly because the mainstream perception and take on breast cancer is fight it, beat it, be celebrated as a survivor and move on! Rallies around the country give the impression that we are winning this “war” that we are beating breast cancer and there is so much to celebrate in pink boas, tiaras & tutus. However, the death rate from breast cancer hasn’t changed significantly in 30 years. 40,000 women will die this year from breast cancer. It is the leading cause of death for women 35-45. I was one of those happy survivors – wrapped up in my survivorship, celebrating my victory. I wouldn’t change that for a moment. I don’t want to take away from the celebrations of those who are living cancer free after facing cancer. It is worth celebrating!!! I just wish there was more awareness that 20-30% of all women diagnosed become stage 4. Once this happens you are in treatment for the rest of your life. The average life expectancy is 2-3 years. These are the facts. These women and men! (myself included) need to be part of the breast cancer story. And, more money needs to be directed toward research to help truly save lives by extending the lives of those living with the ONLY form of breast cancer that is deadly – stage 4, metastatic breast cancer. I think there were some significant steps taken this month to broaden the story of breast cancer. I worked with our Komen Foundation in Louisville to host their first event focused on metastatic breast cancer survivors specifically and raise several hundred dollars for metastatic research. Hope Scarves is creating a research fund where we will direct a portion of the money we raise to research. It is a very small step in the right direction and I hope Komen and other breast cancer organizations will recognize that the breast cancer experience is very different for those who are stage 4. My hope is with research we can turn this fatal form of breast cancer into a chronic disease you can manage and live with. Time is ticking for me, but I am committed to doing all I can to raise awareness about the unique needs and experience of stage 4 patients and raise funds for research to help me and those who come after me feel comforted and advocated for when their breast cancer spreads beyond the breast. Two places you can direct donations with a focus on metastatic breast cancer are www.metavivor.org and a new organization I am helping to found called www.twistedpink.org
So, as we get our Halloween costumes ready today (Wills is Jake from State Farm and Bennett, an injured soccer player- complete with a real cast on his arm) I am glad to wrap up breast cancer awareness month. I am excited to focus on being a mom, wife, daughter, friend, sister first and breast cancer advocate/patient second. I believe in finding meaning in every step of life. The meaning in this new diagnosis for me is to cherish life more fully, to be present in the little moments of life and to help bring a voice to stage 4 breast cancer. I hope I can do this in big and small ways for a long (deep breath) time!
Thank you as always for your interest in our journey and your support along the way. One day at a time with love, laughter and adventure.
Time to change the laundry!!