Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

Martha Carlson

Martha Carlson received a diagnosis of metastatic breast cancer in 2015. Read all of

I came late to the cancer community. It wasn’t until a year and a half after my diagnosis with de novo metastatic breast cancer (MBC) that I met my first friend with a similar diagnosis.

She was an outspoken and involved MBC advocate who tracked me down after a local event for any-stage breast cancer.

I’m not lying when I say that meeting her was an eye-opening and momentous event in my life. I hadn’t been aware of the vast network of patient knowledge, nonprofit efforts, funds or even some of the basics of MBC that didn’t specifically apply to me.

There are times when I wonder what I would be doing now if our paths hadn’t crossed. Maybe I wouldn’t be writing for CURE®, maybe cancer would just be a footnote in my life, maybe I would care less about everything happening around me.

We would have been friends regardless of when we met, but right now, in the United States, jumping into a community of people from a variety of backgrounds and with sets of beliefs that differ wildly among us can be a challenge. In the past, I’ve paused my time in various groups for personal reasons, mostly because they brought too much loss and confusion when I already had that among the people I knew in person. But now I find myself questioning many cancer groups because the turmoil in the wider world has affected how we think about each other. I’m guilty of that, too.

For example, until this past week, I had never blocked a person in a closed cancer Facebook group, but in my life outside of cancer, I don’t tolerate people “laughing” at someone else’s pain. So, when I saw such a response to a comment of my own regarding clinical trials, I didn’t hesitate to hit block.

But that choice has stuck with me. I believe that as much as the term is derided in some circles, people living with a terminal disease who are seeking support deserve a “safe space” with rules in place that consistently prohibit hateful comments or bullying and encourage “scroll by” behavior for topics like politics or religion that easily offend. Not an easy job for the fellow patients who monitor these sites where pain, love, knowledge and tips reverberate.

But keeping the chaos in the wider world under control within our groups means everyone, including people at their most frightened, can find hope and support.

It’s been hard to see the cancer communities that brought me close to so many people crumble over the past couple of years, places like Twitter that united researchers and MBC patients, the breast cancer social media hashtag that once made finding friends easy and even closed Facebook groups.

I hope that these connections rebuild themselves because there is much at stake and, with them, our lives are so much richer. I treasure my MBC friends, whether met on or off social media, for so many reasons, including how I’ve grown because of them. Without these cancer communities, my world would have continued to shrink, but because of them it has flowered. I hope that can continue.

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Articles

The narrative reflects on the transformative impact of joining the metastatic breast cancer (MBC) community, highlighting the importance of patient networks and advocacy. The author discusses the challenges of maintaining supportive cancer communities amidst societal turmoil and personal experiences of blocking negativity in online groups. Emphasizing the need for safe spaces, the author underscores the value of these communities in providing hope and support. Despite recent challenges, the author remains hopeful for the rebuilding of these connections, acknowledging their significant role in personal growth and enriched life experiences.

I found community after my metastatic breast cancer diagnosis, but recent discord in cancer support groups makes me fear we're losing these vital connections.

Are We at Risk of Losing Our Breast Cancer Community?

I titled this blog, “Strutting Into Year 11.” Anyone who knows me will laugh at the title because if there is one thing I am not, it’s a strutter.

But this year demanded a little more from me — more confidence, more faith, more, more, more. There have been other years like this during my time living with cancer: year three comes to mind, when I passed the median life expectancy (at that time) for HER2-positive metastatic breast cancer (MBC), and so does year five, when I suddenly saw the world return to me with more hope than I’d felt since I received my diagnosis.

There’s a pretty big gap between year five and year 11, but falling in those gap years are the worst: COVID years, my mother’s death from MBC, the loss of very good friends to MBC and some general family upheavals. It’s been a rough stretch, and despite what I see as scary and uncertain times ahead, I want to believe we will see better.

Personally, I’ve been thinking about what it means to be entering my second decade living with this disease. The first thing I wondered is if 11 is considered a lucky number. Turns out that in some cultures, 11 is associated with new beginnings, spiritual awakening and auspicious opportunities, representing alignment and balance.

Of course, if there is a “new beginning”, there is also a past. When you live this long with stage 4 cancer, receiving regular treatments with annoyingly long-lasting side effects, time doesn’t stand still. In addition to being the start of my second decade with cancer, this is also the start of a new decade of my life. Aging with cancer is something of a challenge. There isn’t really enough known about long-term survivors like me, from adjusting treatments to maintaining quality of life. While I was once considered “young” by my oncologist, age is now an issue that demands special attention.

Year 11 truly feels like a year of new beginnings, and here’s my plan for strutting through it:

 Lead with “I’ve been lucky” when asked about how I’ve stayed alive with Stage IV cancer.

 Luck plays a role, no argument, but steps I actively take also play a role. I’m done downplaying the role of researching treatments and my belief that my behavior impacts my quality of life.

 Gave the benefit of doubt to people I didn’t actually respect or believe.

: Time is short and so is life. This has been brought home to me over the past several years. Cancer has taught me that some people are not my friends, regardless of what they say. While age is finally teaching me that I don’t have to cut everyone a little slack when they do things that are damaging.

 Name every emotion, sometimes spiraling into pain that was hard to escape.

 I still name what I’m feeling but I’m building guardrails to keep me in a better psychological space. This means things like creating more, reading more, seeing more, doing more and welcoming more. Not positivity, but a return to a bigger life.

 Count my cancer losses (there’ve been a lot).

 This decade with cancer hasn’t been all about the losses. There’s been growth too and building on that is where I am for this new beginning.

Living with HER2-positive metastatic breast cancer for over a decade, the author reflects on the challenges and growth experienced during this journey. The transition into the eleventh year is seen as a new beginning, marked by a shift in perspective towards actively managing the disease and embracing life. The narrative highlights the importance of acknowledging both the losses and the growth that come with long-term cancer survival. The author emphasizes the need for personal empowerment, setting boundaries, and fostering a richer life experience despite ongoing treatment and aging.

After living with metastatic breast cancer for 11 years, I reflect on my journey and plan to embrace the coming year with confidence and self-advocacy.

Strutting Into Year 11 With Metastatic Breast Cancer

Martha Carlson received a diagnosis of metastatic breast cancer in 2015. Read all of 

The last couple of months of the year is when we eagerly talk about giving thanks, even if we have to search hard for things to do in our rapidly changing world. But 2024 has been rough for me, with personal losses and changes making gratitude both more difficult and something I’ve had to more actively practice getting through some of these days.

That “active practice” has meant that even when I am struggling and only feel like complaining, I still complain. I also remind myself that there are memories for which I am grateful that can only make my future more whole. This is truly how it has been for me for the past 10 years living with metastatic cancer — plenty to rightfully be unhappy and angry about side by side with more positive and joyful emotions.

I’ve had to remind myself that personal health-related setbacks are not always permanent setbacks. They may be short-lived or a bit longer, but just as I’ve experienced with the challenges of cancer, the expression that “the only way is through it” echoes often in my mind. There have been other difficult times like this since I was diagnosed. Sometimes they are because of a beloved friend’s death or anxiety over my own treatment but, without being too Pollyanna-ish, I try to frame struggles as an opportunity to learn how to manage tough things, even though the result may not be what you hoped.

I guess if I expect growth only through positive events then, for me, there is little point in the idea of gratitude (although just to be clear, I’m not turning down those good times). As a result, my gratitude is wide-ranging but also super-specific, and sometimes it requires a lengthy explanation even when I think about it to myself.

For example, late this summer, I strained my knee while 

 on the wild Salmon River, which was something I loved and will be forever grateful for. Followed by this, was a fall at home that possibly further injured my knee and broke my top two front teeth.

Unable to walk without pain and missing most of those teeth, I made my way to the emergency room, where, naturally, the focus was on my cancer diagnosis and what a fall might mean in terms of bleeding and metastasis.

I, on the other hand, was focused on the pain around my mouth and the fact that my front teeth were suddenly gone.

The doctors’ more serious concerns raised my anxiety but the “normal” and “unremarkable” findings from the tests provided a rush of relief and gratitude. I could have my teeth fixed and my knee would eventually recover with rest and physical therapy. And, while a head injury or brain metastases can also be treated, the reminder that I have much to be grateful for was needed in that moment. I’ve mentally returned to that moment and the unexpected gift of gratitude for nothing more serious than temporary setbacks and other changes I will learn to incorporate into my life as 2024 winds down.

We aren’t immune to feeling like life has handed us a lot to face in our lives with cancer and maybe even feeling sorry for ourselves at times, especially when even more is thrown our way. This year, one that has been fraught with big sadness and small setbacks, I am grateful for the abundance of steady love that remains and for the people who lead us to hope and gratitude.

Navigating a challenging year, the author reflects on the practice of gratitude amidst personal losses and living with metastatic cancer. Despite setbacks, they emphasize the importance of actively seeking gratitude, even in difficult times. Personal health challenges, such as a knee injury and dental issues, highlight the balance between medical concerns and personal anxieties. The author finds solace in the support of loved ones and the resilience gained from overcoming adversity. Gratitude emerges as a multifaceted practice, encompassing both positive experiences and the lessons learned from hardships.

Setbacks happen often in life, but finding gratitude can come at unexpected moments with cancer. 

A Season of Setbacks and Thanks With Metastatic Breast Cancer 

Here’s the truth: I was unprepared for an adventure trip organized by the fantastic Idaho nonprofit River Discovery. I’d entered the drawing to attend for at least four years, basically ever since I heard about their annual Salmon River outing. The trip primarily includes people, any age, from Idaho who’ve been diagnosed with any type of cancer and who may be in or out of treatment. People from out of state, like me, are welcome to enter the lottery and though your chance of selection is slightly lower, this year there were several people from as far away as New York.

 Although the river trip is no-cost to participants, you have to get yourself to Idaho and most likely spend at least one night in Boise on either side of the adventure. I also wanted to tip the river guides and buy a small souvenir.

 I’d started working out with light weights and strengthening my core muscles the moment I got the call from Betsy Carver, who heads up the organization. Anyone who’s lived long enough with stage 4 cancer knows how muscle strength and flexibility can quickly become diminished and I wanted to be sure I could do “all the things” on this adventure.

Martha on her adventure at the Idaho nonprofit River Discovery.

 When I was confused by the lengthy packing list supplied by Wilderness River Outfitters, I called Betsy for clarification. She told me that she packs two swimsuits and two river outfits, wearing each one for three days in row, plus rain gear and something to wear around the campsites. This was good advice because it helped me streamline necessities and keep my pack light. 

 Everything else. I’d visited Idaho as a kid, with my family, but I was caught off-guard by the emotions I felt when we “dropped in” to the river knowing that we wouldn’t be back in civilization for six full days. Most of the people on the trip were out of cancer treatment, but I was one of three with metastatic breast cancer. I’ve been in every-three-weeks stage 4 treatment for almost a decade and it’s no exaggeration to say that I have become more physically cautious over those years because, sometimes, cancer makes you distrust your body. What was I doing climbing onto a raft in the middle of Idaho to travel 80-something miles down the “River of No Return”?

I was doing what so many of us, regardless of age, cancer type, stage of diagnosis and all the varying demographics that categorize us, want to do: living my life by putting fear in a zippered back pocket.

I took a seat on every boat: princess boat, where you get to talk to one another and appreciate the jaw-dropping views; oar boat, where you follow the guides’ instructions through rapids and still water; and the duckies, inflatable kayaks that set you right into the water.

Those kayaks are made for people who want a physical challenge. I was thrilled to make it through class 4 rapids unbroken and ready for more. Though I loved the camaraderie of the other boats, I felt pure pleasure at finding my way through rough water on my own. Out of the long list of things I wasn’t prepared for—seeing the Milky Way as I slept outside the tents, the strength and kindness of the River Discovery team and the guides, the connection with fellow participants, being awakened by the call of Canyon Wrens, learning to balance on the groover and so much more — the most life-changing lessons came in the way the guides talked about getting through rapids on a kayak.

You are alone, even if you are carefully following in a line, waves and drops change. You may not be strong enough to make a quick adjustment and have to find another way to compensate, but despite all these new and unknown situations, the key is to keep your focus on where you want to go.

Let the other things drop out of your mind and paddle like hell to get there.

If that’s not a lesson for living with stage 4 cancer, I don’t know what is.

The narrative recounts a transformative adventure trip organized by River Discovery for cancer patients, highlighting the emotional and physical challenges faced by participants. Despite initial unpreparedness, the experience offered profound life lessons, particularly for those living with stage 4 cancer. The trip emphasized the importance of focusing on goals and overcoming fear, as participants navigated the Salmon River's rapids. The camaraderie, natural beauty, and guidance from the River Discovery team provided a supportive environment, fostering resilience and a renewed perspective on living with cancer.

Martha Carlson shares her experience of overcoming her fears and embarking on a whitewater rafting adventure despite her stage 4 cancer diagnosis.

Martha Carlson

Are We at Risk of Losing Our Breast Cancer Community?

Strutting Into Year 11 With Metastatic Breast Cancer

A Season of Setbacks and Thanks With Metastatic Breast Cancer

Being Unprepared May Open The Door To Life-Changing Lessons With Stage 4 Cancer

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