By now, you all know how I feel about the power of sharing our personal stories. Sharing almost always decreases feelings of loneliness, anxiety and fear. Sharing almost always increases healing along with a feeling of empowerment. Knowing you are not alone sometimes means everything. It’s why I share my story. It’s why from time to time I share the stories of others.
I’m delighted to feature a guest post written by my friend and fellow author, Laurie Kingston. Laurie is living with a stage IV breast cancer diagnosis and shares how she the is learning to balance life and all the uncertainties that accompany a diagnosis of metastatic disease. She is the author of the book, Not Done Yet: Living Through Breast Cancer. In her book, Laurie shares candidly about her breast cancer experience including what it was like to realize she would be living out every breast cancer patient’s “worst case scenario” – hearing the words your cancer has metastasized. Laurie’s book is engagingly honest, thoughtful, insightful, very funny and yes inspiring. I know you’ll enjoy her guest post!
Metastatic Metaphor
by Laurie Kingston
I’ve been thinking that life is like a card game. You have no control over the cards you’re dealt; but there is strategy, experience and skill that goes into playing the game.
I’m a lousy card player.
I was first diagnosed with breast cancer in January 2006 and went through the gamut of treatment: mastectomy, chemotherapy and radiation. It was brutal and I celebrated putting it all behind me.
In November 2006 I learned the cancer had spread to my liver – metastasized. Although my liver was “riddled with tumors”, I responded shockingly well to chemotherapy and Herceptin. By July 2007 I was in full remission, with a scarred liver but absolutely no sign of cancer.
The remission lasted for more than five years. I stopped chemotherapy but continued Herceptin. There was even talk of being “cured.” Then in October 2012, I asked for a brain MRI because my kind of cancer (Her2+) has a special affinity for the brain and I’d learned that many women with Her2+ cancer eventually develop brain tumors.
I found out I had a 3 cm lesion on my cerebellum.
My medical oncologist, radiation oncologist and surgeon all advised different treatments. I listened, tried to find research (there is very little) and thought through my options. The night before I was to make my decision, a woman I knew online sent me a video from a session on brain metastasis at a Metastatic Breast Cancer Network conference. I watched a neurosurgeon review the science and advise the very route that already felt the best to me.
I had surgery last November, followed by cyber knife radiation in January. It hasn’t been easy but seven months later, aside from a little soreness and stiffness in my neck, I feel stronger and fitter than I have in years.
A little luck, a little knowledge, a little strategy; all have factored into my card game.
I’m struggling with how to live my life now – how to balance caution and worry with enjoying all the good things that life can offer. I must remain vigilant but I can’t be paralyzed by fear.
I want very much to live in the moment but also to pace myself and be responsible with my health and finances because I may be lucky enough to live a long time.
I’m learning to distinguish between the expression of healthy sadness and anger and the kind that holds me back, keeps me from moving forward.
I’m trying to appreciate past successes and make amends for failings without bogging myself down with regret and sadness over missed opportunities.
I’m attempting to understand when to advocate for myself and accept that complaining does not need to be punitive, nor does it make me a bad person. Conversely, I need to know when to let things go because life is too short.
And I hope desperately to keep living – being this flawed, constantly growing and changing person for as long as I possibly can.
Right now, there are no drugs that will protect my brain, in the way Herceptin has protected the rest of me. I just have to remain vigilant and hope that whatever happens next, there will be newer and better options to treat my cancer.
These are the cards I’ve been dealt.
It’s up to me to figure out how to play them wisely.
EDIT UPDATE: Sadly, Laurie died from metastatic breast cancer on January 8, 2018. Read more here.
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Are you living with metastatic breast cancer or do you know someone who is/was?
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Have you experienced cyber knife radiation treatment or do you know someone who has?
For a chance to win your FREE copy of Not Done Yet: Living Through Breast Cancer, simply leave a comment by noon on Sunday, August 11th and you’re in! Good luck to those who enter! Note: This particular giveaway is open only to those living in North America.
About the Author
Laurie Kingston is the author of Not Done Yet: Living Through Breast Cancer, published by Women’s Press in 2009. She lives in Ottawa, Canada with her two handsome sons, a hairy little dog and her husband, who is both hairy and handsome. She also writes a blog called, Not Just About Cancer. To purchase Laurie’s book, contact her via her blog. It’s also available as a kobo ebook at http://store.kobobooks.
Lorie
Monday 12th of August 2013
What a wonderful and inspiring post Nancy, thanks for sharing. Laurie, thank you also for sharing and writing about your journey. I am also a lousy card player but I try to live one day at a time and just continue to be grateful and have a positive mindset of the days ahead. I wish for your continued recovery, milestones and wonderful time with your family.
Nancy
Monday 12th of August 2013
Lorie, Thank you so much for the lovely comment. Wishing those same things for you, Lorie.
The Accidental Amazon
Sunday 11th of August 2013
Great post, Laurie & Nancy. Laurie, you may be particularly interested in some very intriguing & promising research on a kind of chemo-prevention for HER2 brain mets that METAvivor.org is helping to fund. I wrote post about it for the METAvivor blog early this year. It's actually about time we check in with the lead researcher for an update. Here's the link: http://metavivor-blog.com/blog/2013/01/30/treatment-for-brain-mets-a-metavivor-research-grant/
Much luck & wisdom & joy & years, Laurie.
Kathi
Nancy
Sunday 11th of August 2013
Kathi, Thanks so much for sharing that link. I had forgotten about that particular post you wrote. I love those two words "promising research" - there's so much hope in them.
Jen
Sunday 11th of August 2013
I'd like to read more. Great analogy and true. 2 yrs since my BC & MBC dx. . . Not an easy adjustment because it is about constant adjustment to the way I function with side effects and for me that's been with new meds every 3-6 months since: original poison, slash & burn. If it were just me (my husband and extended family) i think it may be easier but life with (almost) 2.5 yr old twin boys is a challenge as is. . . I didn't even know these cards were in the deck but I've become a quick learner (Of note: I also appreciate despite the challenge that my boys bring to our life they keep me going and motivated in a way that could not otherwise be replicated.)
Despite all the differences in our (women & men living with MBC) stories and in our "medical cases" there are often similarities or relatable themes we experience and yet much to learn from one another! Thanks for sharing your story Laurie, both via the book and as it continues in your blog.
Nancy, thanks for the guest post and YOUR CONTINUED hard work: advocating, sharing, bring together and maintaining community, & educating. I "share" with others from you often!
Nancy
Sunday 11th of August 2013
Jen, You are dealing with so much - I can't even begin to imagine the challenges you face on a daily basis. I love the way you said despite the challenge your boys provide a motivation like nothing else. I completely agree that there is so much to learn from one another. This is why I love hosting guest posts from time to time. Sharing is so important. I can't say that often enough. Thanks so much for reading and commenting. And thanks for the kind words about my blog. They mean so much.
Bev
Saturday 10th of August 2013
Lots of good wisdom in here, things that until now, have just been on the edge of my consciousness. I have a friend who was a heavy smoker until she got lung cancer 15 years ago. She knew that many times lung cancer spreads to the brain, so after lung surgery, she had her brain radiated as a preventative measure. Now she exercises, is careful what she eats, and enjoys life. She's been in remission 15 years now. I pray that you'll have the same kind of success.
Nancy
Sunday 11th of August 2013
Bev, I'm glad your friend continues to do well. That's wonderful. Thanks for sharing, commenting and entering the giveaway. You're in!
Annette
Saturday 10th of August 2013
Hi and thank you for both your blog and the opportunity to win this book. I am currently fighting both breast and stage IV colon cancer for the last 3+ years. Any and every thing I can read that does not make me feel alone in this war is somuch appreciated!
Nancy
Sunday 11th of August 2013
Annette, I'm sorry about all you must deal with. That's an awful lot. I'm glad you find that reading anything and everything you can helps. Knowing you aren't alone always makes a difference. Thanks for commenting. Good luck in the giveaway!