Why did you decide to be a metastatic breast cancer support group facilitator?
I know how isolating it can feel to live with cancer. As a woman living with metastatic breast cancer, I felt that I could offer some real world advice to those in the group. Also, having survived for 9 years and become a patient advocate for women with metastatic disease, I hope I can offer inspiration, as well as information on what’s new in research and practice.
What do you like most about facilitating your group?
The women who call in are amazing. They are living with a difficult diagnosis, and sometimes really challenging circumstances and yet they remain supportive and uplifting. They inspire me every week. I love the way they support each other.
When were you diagnosed, and what was your diagnosis?
I was diagnosed in 2009 with metastatic Her+ breast cancer.
Where are you now, as far as your own breast cancer “journey?”
Ok, so first of all I hate the word journey. Even in quotes. I have to take medication every day and so far it’s been working and I’m incredibly lucky to be cancer free right now. I’ll most likely be on medication for the rest of my life and managing side effects, but I’m well aware that I’m one of the lucky ones.
In addition to volunteering for SHARE, what else do you do? What do you (or did you) do for work?
I’m a writer and the author of “Bald is Better with Earrings – A Survivor’s Guide to Getting Through Breast Cancer” but now I spend most of my time as a patient advocate. I sit on the Executive Group of the Metastatic Breast Cancer Alliance as the co-chair of the Information Task Force. I am also on the Scientific Advisory Committee of the Susan Love Foundation. I serve as a grant reviewer for the Department of Defense Breast Cancer Research Program and am a Komen Advocate in Science. So basically I’m all breast cancer all the time.
What do you do for fun?!
I love spending time with my husband and two grown (I don’t know - are they grown if they’re in their 20’s?) kids. When I’m not working, you can often find me walking on the beach with my dog and collecting sea glass. I’m also a die-hard Seahawks fan and kind of obsessed with football. Other than that, I try to spend as much time as I can with people who make me laugh.
What did you learn about yourself while going through your own breast cancer experience?
People ask me this all the time and I always say that I learned I can do things I didn’t know I could do and also some things I definitely can not do. I didn’t know I could write a book, but I did. I didn’t know I could lobby congress on The Hill, but I did. I didn’t know I could pick myself up after a devastating diagnosis, but I did. I also learned how important it is to have positive people around me. It’s something we hear all the time, but once you’re spending your days fighting for your life, it’s amazing how important that really becomes. I learned how important it is to set boundaries and how to say no and to ask for help. I think that’s the hardest part for women. Learning that asking for help is really powerful both for you, and for those you ask. I learned I cannot give up chocolate.
What priorities did you have before and after?
Some priorities didn’t change at all. I‘ve always been a family first person and that didn’t change. I have, however, given myself more permission to create time for self-care and to not worry about things being perfect. Women often try to come across to the outside world like they can handle everything and be perfect at the same time. I’ve definitely let that go. I do the best I can and surround myself with people who accept me and don’t judge when I have to cancel plans and spend the day in bed.
Any other insights that you want to share?
I think it’s really important for women to let go of trying to be the perfect patient. We all have this idea of who that patient is. She can do chemo, have a cool “shave-your-head” party, rock a scarf or go out bald. She can walk 39 miles in 2 days, start a local charity, do all this with a smile, wearing just the right amount of natural looking makeup and only eat organic blueberries and kale. This is not realistic. The real cancer patient is scared, hopeful, tired, sick, may be suffering from self image issues and hopped up on steroids. She’s having nightsweats and nightmares and convinced that the woman in the other chair in the oncologist’s office is dealing with the whole thing way better. We need to let women know it’s ok to feel sick and tired and scared. It’s cancer, after all.