Today’s #metsmonday interview is with Ellen Dugan. Ellen is a member of the Hear My Voice metastatic breast cancer outreach team. I love her roll with the punches approach to life as is represented by her favorite quote, You can’t stop the waves, but you can learn to surf. Enjoy today’s interview with Ellen.
What is your official diagnosis and tell us about your current treatment .
I am Ellen, age 56 at first diagnosis, currently approaching 61. In September 2011 I was diagnosed with stage 3B IBC (inflammatory breast cancer) . I had chemo, a unilateral mastectomy, chemo, radiation and a year of herceptin, finishing in Feb 2013. In June 2013 I had a CT scan where a growth on my adrenal gland was found. After numerous tests and appointments with an endocrinologist, it was determined that my IBC had spread. I resumed treatment in August 2013 and have been NED (no evidence of disease) since October 2013. Although I consider myself very fortunate, I continue in treatment, herceptin and tykerb, with CT Scans approximately every 6 months. It is so very frustrating to know there is not enough research to determine if or when I could stop treatment. I continue in treatment, grateful knowing so many others do not do as well, but worried about the side effects of long term treatment.
In the meantime, fatigue and GI problems can overrule any plans I make. Extending my life and that of others, with the possibility of debilitating side effects, should not be the goal. Early detection is important but cure should be the goal!
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
I was separated at the time of my initial diagnosis. I have 2 children, a son soon to be 22 and a daughter ,age 17. This has been the most difficult part, to look at my children and know I may not be here for good news and life’s challenges. My goal is to make memories that my children will carry with them. When I am gone –they will recall the laughs, the disagreements, my support and my love.
What did or do you find most helpful for those wanting to encourage or help you?
The most significant support has been from others traveling the same path. To sit with others who “get it” and share our greatest fears, laugh and cry has been so important. I have great friends and family, but it has been others with MBC who have been my strength. Family and friends have brought meals, driven, listened and tried to understand. They have been wonderful. But unless you are wearing my shoes, it is impossible to fully understand. Do not be afraid of making those connections, they will be invaluable.
What do you want people to know about YOU and your life living with this disease?
I am living my life with stage 4 cancer, I laugh, work, raise my children, travel, have good days and challenging days. My days look much like yours,not living with cancer. If you see me in the grocery store, at the gas station, you would never guess. I look like you, at least for the present. But stage 4 is sitting on my shoulder, voicing an opinion in every decision I make. Stage 4 is a weighty companion.
What three words best describe you and your life as a metastatic thriver?
Resilient, irreverent, flexible
What is your favorite quote?
You can’t stop the waves, but you can learn to surf.
If you would like to share your story, contact me @ Lkailani@gmail.com. Your story matters, your voice counts.
Until next week,