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Advocating for Advanced Breast Cancer Patients

Breast cancer advocate and friend Martha Carlson is a force to be reckoned with. When you read her Twitter bio: “Stage IV breast cancer patient advocate, writer, dreamer, kayaker, with personal philosophy supplied by predictive text: Cancer might kill me but I gotta life”, you know you are dealing with a straight talker.

Continuing the work of others in the MBC community

A former editor, Martha lives in Illinois and was diagnosed with advanced breast cancer in January 2015. Married with three grown children (her youngest is 18 and a freshman in college), Martha has turned her writing skills towards patient advocacy post-diagnosis. This includes being a regular contributor to Cure Magazine, and a very active presence on social media, especially Twitter. An NBCC Project LEAD graduate, Martha is actively connected to the breast cancer advocate community and can be found at breast cancer conferences and seminars. As she puts it, “we’re continuing the hard work of women and men who came before us — making a difference in research, knowledge, medical care, and quality of life for all people living with metastatic cancer”.

Martha agreed to answer questions about her work, including the motivations, challenges, and rewards of life as a patient advocate while, at the same time dealing with active treatment as a metastatic breast cancer patient.

What to say to a metastatic breast cancer patient

You’ve written about the two important things you need to say to a breast cancer patient. What are they? 

I was thinking about all the advice we are bombarded with as cancer patients: diet advice, exercise advice, treatment advice, and relationship advice. So much advice and not enough presence or empathy. The specter of that endless advice was a lot for me as a metastatic patient. I believe that for people who care about someone with cancer, there really are only two things that need to be said (unless you are my doctor) and those are "I'm here" and "I love you".

Treatment side effects

I know you have peripheral neuropathy and heart problems as continuing side effects from your treatment; how have you managed to handle these? 

Well, my heart is looking good these days and fingers-crossed that will continue to be the case, though I hate thinking about what all these years of cardiotoxic drugs are doing to my body. The chemotherapy-induced peripheral neuropathy started back in 2015 when I was on a taxane, which are known to cause this side effect. Despite being off that drug for years now, my hands and feet never recovered and the neuropathy has worsened.

Coping with the roller coaster of MBC

 How have the unknowns of this disease shaped your life and health experiences? 

The unknowns of living with metastatic cancer are huge. I had to learn how to live my life in increments, which I wish all the advice-givers would have to experience. It's hard to return constantly to the people, places, and tests that are associated with this diagnosis. How are you supposed to maintain a positive attitude when a random CT test shows more possible metastatic sites? Knowing this could happen at every test is a real mind game. Living this way is beyond the understanding of most of my healthy friends.

At first, I thought I would die before I even got to see my oldest child graduate from high school when it was fear that I wouldn't reach the average of three years of survival. Now, I've accepted that we just can't know what will happen so I am hyperaware of when I am wasting my time or expending energy on people who don't value me.

Grief of MBC

 How do you handle the grief involved with losing friends to this insidious disease? 

My three closest friends that I met due to breast cancer have now all died of metastatic breast cancer, and two friends in my town have died of ovarian cancer, as well as my brother-in-law, who died of colon and lung cancers. Of course, I start by crying, but I have so much rage about advanced breast cancer. In particular, I rage against the treatments and how they take away our autonomy, how people still continue to think that breast cancer is an "easy" cancer, at how we have to hear, year after year, about progress even as tens of thousands in the US alone die every single year.

I do a lot of writing about loss, which takes the edge off it for me, and all the deaths have made me a more present friend. I try to see and hear what my friends are saying to me when they are alive. By nature, I am pretty optimistic, and by upbringing, I am very good at denial and hiding difficult emotions, so it is my instinct to give a silver-lining type of response to friends who are struggling.

Advocacy

 How rewarding to you, personally, is your advocacy work? 

I didn't think of myself as an "advocate" until I was accepted into Living Beyond Breast Cancer's Hear My Voice training. I think in many ways I still don't fit well into the advocacy mold. When I try to, I feel constrained and resentful, and I know I suffer because of it and so do the people who have to hear me complaining. That said, I have met unbelievably inspiring and smart and kind people through cancer advocacy. I don't like thinking about what my life would be like if I hadn't fallen into the advocacy circle because, overall, my life is so much richer because of it. I've done things way, way outside of my comfort zone. I've made so many friends, people who I know I can turn to when I am scared or confused or need information in a hurry, and who know they can also turn to me. My friends in advocacy are people who want to change things in ways that matter. Of course, it is extremely rewarding even if it is so hard to know we will lose one another because of cancer.

A leader in the MBC community

I met Martha at Project LEAD18, and again at SABCS in 2019. Her standing in the metastatic breast cancer community is sky-high as a mentor, educator, advocate, and friend. As a volunteer with the Metastatic Breast Cancer Alliance, she's part of a patient-led research team looking for solutions to increase clinical trial participation of Black women and men with metastatic breast cancer. I know, also, that she is a great supporter of men going through the breast cancer mill, and this is a great comfort to guys navigating this disease.

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