This weeks interview comes from the beautiful state of Oregon. I spent all my childhood summers there on the coast and am considering retiring there in the near future. Laura doesn’t beat around the bush, she tells it as it is, she is raw and uncensored and I love that about her, it makes her more authentic. [ to me.] She is also a fellow member of the Living Beyond Breast Cancer, Hear My Voice Outreach Team. I didn’t get a chance to really talk to her while we were in training, but her voice was heard many times that weekend in April. I know you will appreciate her interview, it is so thoughtfully written and she leaves nothing left unsaid. Thank you, Laura for being a pure soul.
Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?
In the decade before my initial diagnosis I was very active. For fun I trained for and did triathlons, half marathons, shorter distance races, even a marathon. I wasn’t super fast but I completed them! This is me a month before my initial Stage IIIa diagnosis.
Fortunately, I sold the independent bookstore I owned and operated for thirteen years about a year prior to my diagnosis. I shudder to think how I would have had to lose it had I had to deal with cancer treatment and a small business at which I was the primary employee. I also spent the seven years prior to my diagnosis as an elected school board member in my small town. I had to resign my seat due to all the unknowns about what treatment would be like for me day to day. Basically I had a normal life as a middle-aged mom to two teens – attending their sporting events, bugging them about screen time and homework, and traveling with them and my husband.
I found a large, flat, moveable mass in my right breast. It did not seem too worrisome as I had lots of cysts and my breasts changed often. The literature tells you if it moves around easily it is likely not cancer. I did, however, go in right away for my annual and set up a mammogram, for which I was due. Nine months after finishing active treatment I noticed a lump in my neck that appeared very suddenly. More tests, and a metastatic diagnosis.
What is your official diagnosis. Tell us about your current treatment .
I have invasive ductal carcinoma. It’s triple positive but the hormone receptor positivity is low. My mets were initially to lungs, liver, and mediastinal and supraclavicular lymph nodes. During my initial treatment I had five months of Taxotere and Carboplatin and a year of herceptin. I had a bilateral mastectomy with right axillary lymph dissection and seven weeks of radiation. With the mets I had another six months of Taxotere, Herceptin, and Perjeta (this one was not approved for neoadjuvant use my first time around). Within three months I was NED and remained so through the first year. After feeling funny doing flip turns in the pool I asked for a brain MRI and was given the devastating news of 18 poorly differentiated brain lesions. I have finished whole brain radiation and am now taking Xeloda, Tykerb, and letrazole and hoping for good news in September.
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
Cancer has changed my life completely. (Picture 3). I did not have a pivotal moment or revelation about life. Over time my activities have had to change. I can’t work or run any more, and I am uncomfortable getting in the pool or cycling without a companion. I am grateful for my regular yoga practice though, and credit this and my yoga teacher for keeping me functional at all, both in mind and body. I walk with my dogs to be outside. I worry about my kids dealing with all this all through high school and now college. I am not on college tours right now with my youngest and my husband because I am just too easily exhausted. I refuse to call cancer a gift in any way, though I acknowledge that I have learned a lot about accepting limitations and having gratitude for what I can do.
How do you live your best life now, thriving with a metastatic diagnosis?
Yoga has helped me immensely to appreciate my battered body and calm anxiety. I let my husband do a lot for me, and he does. He is amazing. We both work hard on enjoying our time. We sometimes talk about end-of-life issues and then happily move on to other topics. I try to accept that I ration my energy and enjoy what I can. I spend all the time I can just hanging out with my kids.
What makes you most happy, and where do you find the most joy? Is this different than BC (before cancer)?
I find the most joy, really, hanging around with my family. We have a trip to Belize for Christmas this year and I think it will be lovely, even if I am mostly lying around! Before cancer I had a lot more on my plate. Carving a new identity without my business in the center of town, my school board role, and my crazy exercise has been hard but I have been able to find joy in this new version of my life.
Any version of “you’ll be OK” or “you’ll beat this” really bugs me. This was more prevalent during my initial treatment, and I knew that there were no guarantees. I am also bothered by being told I’m brave or strong. Everyone has shit to deal with and tragedies in their lives. And everyone deals with them, however they must. We all just do what we need to do. I am not braver or stronger than anyone. Like everyone else, I am just dealing with the hand I am dealt.
What did or do you find most helpful for those wanting to encourage or help you?
Mostly I appreciate the people outside of family who have not removed themselves from my life. My core group of friends are always there. They drive me to treatments, make me food, but most importantly they have not shied away from the awkward situation of my illness. Additionally, I am so grateful for the online metster community and the metsters I met at the LBBC conference in April. I don’t know anyone in my community with MBC and these women have literally saved me from loneliness and isolation.
Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
Yes. Absolutely. I feel there is a paradigm shift coming though. The activist group MET UP is the biggest example of this change. And here in my community I am working to educate people about the realities of MBC. We’ll have a die-in here on October 13 in support of the DC die-in. I am also giving a talk to a large local audience with the working title “Not the October Breast Cancer Talk You Think You Came to Hear.” Through my blog and social media posts I can’t tell you how many times people have told me they had no idea of the reality of breast cancer. Paradigm shifts happen in both small and large ways.
What do you want people to know about YOU and your life living with this disease?
I guess I’d like people to know that my situation is more random chance than people really know. That we can’t prevent breast cancer by living a healthy life, and a metastatic diagnosis is not indicative of negligence or oversight on our parts. I have worked hard to take some of the shame and self-blame out of my own mind about my situation, and have come to some measure of acceptance and everyday contentment.
Do you think our cure is near? Or what one scientific advancement in the treatment of MBC do you find most encouraging.
I have no idea how near we could be to a cure. I know we could speed it up by putting dollars into the hands of brilliant researchers with the ambition and the tools to find it. I am encouraged by immunology studies, vaccine studies, and I hope that there will soon be legitimate human research on the role cannabidiol can play in killing cancer cells.
What is one “action” point everyone could do TODAY to promote awareness of MBC.
Everyone could boycott buying ANY product associated with fundraising for breast cancer and instead donate money to non-profits like Metavivor or the Metastatic Breast Cancer Network who are distributing one hundred percent of their funds to metastatic research grants. Everyone could also contact their legislators at the federal level to demand that more of our tax dollars be spent on cancer research. Cancer is second only to heart disease as the biggest threat to American lives.
Do you have a favorite poem, song, quote, or work of art that you would like to share with us.
For whatever reason, the Beatles O-bla-di, O-bla-da really speaks to me in this phase of my life. Also, Lucille Clifton’s poem “Blessing the Boats.”
Blessing the Boats
may the tide
that is entering even now
the lip of our understanding
carry you out
beyond the face of fear
may you kiss
the wind then turn from it
certain that it will
love your back may you
open your eyes to water
water waving forever
and may you in your innocence
sail through this to that
Laura is a 52-year-old married mother of two. She lives on the beautiful north Oregon coast and blogs at http://www.laurasnyderupdates.blogspot.com.
If you would like to share your story with our “Voices of MBC” community, please contact me using the form below or email me at Lkailani@gmail.com
I can’t emphasize enough how important it is to let our voices be heard. Your story counts and could just help make a difference in someone’s life today.
Until next week.