When you’re learning to “lean into life” with metastatic cancer, online friends can be the support that helps you face each day with hope
By Catherine Brunelle
My computer begins to ring. I know who’s calling, yet am not really prepared for this moment. This interview is about something very big, very scary and very new in my life.
“Hi Laurie,” I say, clicking open Skype. “Thanks for agreeing to meet with me today.”
“It’s my pleasure,” she replies with a big smile.
This is Laurie Kingston, a fellow blogger and online friend. We’re meeting face to face for the first time, but that’s not why I’m nervous. I’m nervous because today Laurie and I are going to talk about Stage 4, metastatic cancer—a subject that still feels too raw in my life.
Some women are diagnosed with Stages 1, 2 or 3 and never face a Stage 4 diagnosis. Others have short periods of remission, others long. For me, I was diagnosed Stage 3 in 2010, had no evidence of disease (NED) for nearly three years, and then in 2013 spots were found on my lungs, showing a metastasis of the breast cancer. Laurie has been one of my ‘how to cope’ role models.
“I went through the whole nine yards,” explains Laurie, “very aggressive treatment—mastectomy, chemotherapy, radiation—finished on September 6th 2006, and by November 2006 I knew I had metastatic breast cancer.”
Specifically, the breast cancer had spread to her liver. Laurie went back into treatment immediately, and by July her scans suggested remission. She continued with treatment and remained NED with each scan. Then in 2012, she had a brain metastasis. That was operated upon and today she is back in remission and is being monitored.
With metastatic or Stage 4 cancer, the doctors don’t really talk about curing your cancer, they instead talk about controlling it. My oncologist suggested I fulfill any big wishes. Laurie’s oncologist said she had “years not decades”. (She also suggested Laurie “go get drunk”.)
And yet, there are reasons to hold hope close. More voices are advocating for Stage 4 research, with the online community being one of the strongest voices and a most connected source for support.
Laurie shared a remarkable story with me of that support. When she was diagnosed with brain metastasis in 2012, she was given three different treatment approaches by two different doctors: her radiation oncologist and surgeon.
She needed to make a decision, but felt totally lost. As she wrote it out through her blog “Not Just About Cancer,” a woman from that online network “emailed me a video. It was a lecture given by a surgical oncologist in Texas, saying exactly what he would do if he were in my position, and it was exactly what my surgeon had wanted.”
Laurie went ahead with the cyberknife treatment recommended by her surgeon, and has since been in remission. “I feel like social media has contributed to not just my emotional well-being, but my physical well-being.”
As anyone with cancer knows, this stuff is an emotional roller coaster. Personally, I’ve been feeling all kinds of raw emotions since the metastases to my lungs, and so asked Laurie how she distinguishes between healthy sadness and unhealthy sadness.
“A full year after the brain tumour, I became really upset about it—what it could mean that my brain is not protected, and what it could mean to have a scan and it might be worse. And I realized that it’s one thing to deal with it, but it’s quite another to realize you’re so upset that you can’t live. So for me, that’s unhealthy. Anger can be very fuelling and very healthy, even grief—those are very healthy. It’s when the pain is debilitating, and I’m so anxious about what could happen that I can’t enjoy what I have with friends and family. Then, I think, it’s something.”
For Laurie, when she reached that point, therapy became the right support. She also finds that it helps to relax through writing, with journal writing being one of her favourite outlets (and one of mine, too).
But what about that idea of living she had mentioned? When you are handed a Stage 4 diagnosis, how do you lean towards life rather than constantly dreading death?
“Hope is the only way to keep putting one foot in front of the other,” Laurie explains to me. “It’s more hope than strength or courage. The things that give hope are almost tripe: Hanging out with my kid, going for a walk with the dog, working on projects, finishing something and feeling good about it. Those are the things that sustain me.”
In addition to her blog, Laurie has written a book called Not Done Yet that chronicles her journey through diagnosis, recurrence and beyond. “It serves as a reminder to me that it’s not over,” explains Laurie about her book title. “Even having what I would have thought of previously as a terminal illness—it’s not. It’s not yet. There’s a whole lot more that I’m planning on doing. Stage 4 isn’t the end.”
At this point in our conversation, I have to blink back the tears. So much of this interview is sinking in deep. I’m feeling a strange mix of emotions: compassion, exhaustion and also, funny enough, joy at hearing Laurie’s story. In a world where Stage 4 is seen as the end, it is so good to hear her say that’s not necessarily true. “Knowing that you have metastatic cancer is not the same thing as being told that your life is over,” adds Laurie, the blogger, the mother, the writer, the friend. “There’s a lot of living that we can do.”← prev next →