Martha Carlson

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.

My mom had cancer more than a decade before mine was diagnosed. So did friends, acquaintances, and other relatives. In the US, one in eight women is told she has breast cancer, so even though each new diagnosis was a shock of bad news, I couldn’t call it a surprise.

Before my own diagnosis of metastatic breast cancer, it was pretty easy to look at the pink cascade of products each October and buy some little thing to support the cause. Of course, most people now know better than to think that pink always means the money is going to be spent responsibly. I’ve written about how October Pink generates a lot of cash for good organizations but also for organizations and companies that are unscrupulous. You can read 

my tips on how to find the pink causes that actually help here

But for me, Breast Cancer Awareness Month (BCAM) has been renamed Breast Cancer Action Month. Same great initials, much-improved cause. We are mostly aware of breast cancer but what are we going to 

 about it? In 2020, in the midst of a global pandemic, action matters more than ever if we want to keep moving forward.

True, self-care is an every-month kind of thing but, in October, let self-care action mean that you check in with your primary care physician and get caught up with breast health necessities. Schedule a mammogram, read about less common breast cancer signs (breast warmth, for instance), and while you’re at it, get caught up on health care for all the other parts of your body.

If you’ve been diagnosed with breast cancer, use October to learn about how care may be changing for you. Ask about risk of recurrence and risk reduction, find out about your specific risk of recurrence and what to do if you experience a symptom. Knowledge is power.

Take an hour a week to read a new article about what you’re most curious about in cancer treatment and care or go to the website of your favorite breast cancer organization and see what webinars are upcoming or are already there for on-demand viewing. What we know about breast cancer is changing--sometimes rapidly--and being aware of those changes could improve your own healthcare.

The great thing about being an advocate is that it encompasses so much. Speak up for yourself at an appointment where you might otherwise be silent, write a letter to your state representative asking that data be collected on recurrences, offer to tell your story or remind your friends to not skip their own self-care actions. Speaking up can help you even when you think no one will listen.

This month of pink is a big deal for groups that do great things, and money, as we know, is in short supply for many of them. Consider giving directly to an organization that has helped you or that you feel will truly benefit others.

. If it feels uncomfortable to challenge the power of pink--all those boobie bingo games and pink hearts--know that those of us living with metastatic breast cancer are grateful for your strength in standing beside us as we try to make it clear that we want more and we deserve more. Remember that everyone benefits from the discovery of drugs 

Articles

How to turn breast cancer awareness into actions that can improve your life and those of people you love.

Breast Cancer Action Month

Five-plus years of cancer treatment has left its mark on my physical self. When I think about “returning to normal” while living with cancer, I try not to compare myself to my former self or to those around me.

My “normal” with cancer is what works for me today and could be very different tomorrow.

So, ask yourself, what do you want your normal to be? Here’s how I answered that question:

: For me, there’s no question that movement makes a difference. Though I had a treadmill pre-cancer, I stopped using it because of enormous fatigue. Very early on in my diagnosis, within a week, I read a study exploring exercise and cancer drug effectiveness. Despite being a mouse study, the results were enough to make me exercise even through six months of a taxane-based cancer therapy and then long-term targeted treatment.

Not everyone can do what I did. I know that, and everyone, but especially those at increased risk of fractures, falls or other dangers, needs to speak with their doctor about how to make exercise a part of daily life no matter how minimal it may seem.

: My best diet has been one that is traditionally considered healthy, with an abundance of vegetables, some fruit, limited processed food, fish, some dairy and little to no red meat. Other people will thrive on other diets. If you aren’t sure about what a healthy diet is, reach out to your cancer center specialists who can refer you to a knowledgeable dietician that will specialize in diets for patients with cancer.

: I am an abject failure when it comes to reducing stress. I try, fail, and stress about that too. But that doesn’t mean you have to let it control you.

: In terms of exercise, I wanted to be able to get out of a kayak with more grace than I’d been able to muster. This meant I needed to work on both my strength and my balance. Perhaps not so coincidentally, strength and balance had been seriously impacted by ongoing chemotherapy-induced neuropathy. Pain and less ease with walking sent me to a physical therapist, where I learned exercises to help with both of strength and balance, while my daughters encouraged me to slowly increase my use of hand weights and resistance bands.

: I took part in a study of metastatic breast cancer patients that included changes to my diet. There were no off-limit foods, yet the focus on increasing the amount of vegetables and whole-grains meant that overall my diet became healthier. At first, I was resistant to this plan since I felt I was already eating well but, even though the study has finished, I am more aware of the food choices I make.

: Part of returning to a “normal” life is not being afraid, or at least being less afraid, of taking risks. I have tried--and am set to try again--acupuncture for my neuropathy. I have sought out small adventures, like a mostly sedate river rafting day, that could seem risky but with precautions are no more dangerous than other choices I make.

: I have always gravitated toward activities that are bound to increase my anxiety. I do make an effort to take breaks from stress-creating situations. I get up and walk around while anxious, I go outside for fresh air or just shut down the computer and turn on music.

I have also learned techniques to calm my nerves--mostly through qi gong, but also through very modified meditation. For me, cancer is a constant low-level stressor that builds during certain times, such as at scans and on treatment days. I try to acknowledge the stress and not just deny it since I can try to do something that helps if I just admit that I feel it.

Figuring out your basic needs for a return to “normal” can you help you find the right path for a healthy lifestyle after a cancer diagnosis.

After a cancer diagnosis, it’s hard to find what “normal” means, but by looking at the answers to the basic goals you want to achieve you can find the “normal” that works best for you.

Even After a Cancer Diagnosis ‘Normal’ Days Are Ahead

I smile when asked about “returning to normal.” So often, we want to return to the status quo — the state that existed before where we are now, even when that “before” may not have been the best place to be.

This is how I think about cancer — the before was good but I was blind to my risk and to what was happening inside my body. So how good was it, really? I get asked, a lot, about how to return to normal while living with cancer. My first thought is that this is not the goal in my life; I don’t want to be returning to the past since I’d rather be looking toward the future.

I’ve found it better to acknowledge what I am now and to add those pieces of my former life that resonate today. I want to be better than I was, in so many ways.

As a person living with cancer and ongoing treatments, I’ve learned how to live with uncertainty in ways that many people don’t experience. My uncertainty centers around how long a drug will keep working and how long I will live once it stops working. It’s about life and death. Making room for this uncertainty, psychologically and emotionally, has been difficult and essential.

Living with years of active cancer treatment, I’ve spent a lot of time drawing upon memories of times when I needed resilience and focus to get (or stay) where I wanted to be. That’s because, for me, living as normal a life as I can has meant being knocked down. A lot. It’s meant fighting my way up a steep learning curve about cancer and my care, putting myself out there to advocate for more research and better patient experiences, shoving down feelings of discomfort in order to be the person I know I can be.

Before cancer, I lost moments of profound joy by not being centered and present in my daily life. My husband would sometimes ask me “If not now, when?” whenever I chose to keep to myself rather than reach out to the people I loved and who also loved me. I keep his question close to my heart these days and remind myself that the joy I want is right here, maybe a little changed — just like my life — but not gone.

Long ago, hope was a vague expression of distant dreams. I still have that kind of hope but my new expressions of hope center around action. I hope for better treatments and I take action to help make that happen. I hope for stronger relationships between doctors and the patients they care for, and I take action to try to improve communication and knowledge. For me, today, hope is a word of action.

I’ve tried to live my life in gratitude, always, though sometimes less well than others. Living with cancer has reinforced the core of my absolute belief in gratitude. The heartbreaking toll of metastatic cancer can hide gratitude momentarily, but it always reappears. I’m not sure my before-cancer self had the capacity for gratitude that I now have for kind people, resourceful doctors, scientific dreamers, and our beautiful world.

So, how do you get back to normal? For me, much of it came from acknowledging the power of gratitude, strength, growth, joy, and hope. These threads are knit tightly together, flexible, frequently changing in importance, able to absorb the hard times and weave those in too, forming an ever-evolving, ever-better normal.

I get asked, a lot, about how to return to normal while living with cancer. I don’t want to be returning to the past since I’d rather be looking toward the future.

How I Learned to Embrace the 'New Me' After Cancer

Since I started living with cancer over five years ago, it’s demanded I make “flipping your perspective” my superpower. I’d rather be able to transport myself through time and space or at least fly, but for practical purposes, perspective-flip mastery is a good power to have.

Among other things, I’ve used it when I can’t get out of a minor funk and when someone says something unintentionally hurtful while trying to be kind. And now, thanks to an excellent 

 virtual Metastatic Breast Cancer Conference featuring advocate Corinne Whitney, I realize what I’ve been doing all along in my quest for better palliative and supportive care just needs a perspective switch.

Palliative care — which is kind of an umbrella term for the care patients need to have the best possible quality of life — and supportive care were unmentioned when I started treatment over five years ago. I only learned about them by becoming active in cancer advocacy and through social media, where I was amazed when other patients talked about their palliative care team addressing the same issues I faced alone.

Only … perspective-switch … I wasn’t alone. I did, of course, have the friends and family who love me. But I also had my health care team. No, that team didn’t (and doesn’t) include a palliative care specialist but it included people who know how to get me the care I need, if I express that need.

As I listened to the webinar, I thought about how my oncologist, when I said I wasn’t exercising as much, and she asked why not, immediately referred me to a specialist and I was in physical therapy within 10 days. The same kind of thing happened more recently with my mental health and with concerns about my bone health.

Sure, it would be wonderful to have a designated palliative care doctor on my team but what I have constructed instead works well, too. As Ms. Whitney pointed out, “You know what your needs are.” She’s right. There is a specialist for almost anything and between your oncologist, your primary care physician, the nursing staff, and your own community (family, friends, cancer organizations, fellow patients), you can figure out who is the best person to see. “There is help out there, but you’re going to have to ask for it” is probably nowhere as true as in palliative and supportive cancer care.

As I am writing this, I am thinking about my oncology appointment tomorrow. My chemotherapy-induced peripheral neuropathy continues to be a problem for me. It can hurt to type. I can’t comfortably hold a pen or pencil. I have learned how to compensate for these issues and others but maybe there’s something more I can do. How do I ask for that help — and how best to ask for what’s needed when palliative/supportive care/survivorship aren’t easily located or accessed at your cancer center?

Sometimes the side effect or issue is crystal clear, like my neuropathy. It may be more general, such as fatigue or not feeling like yourself. The more specific you can be — with examples of when you experience these symptoms, what you’re doing, the time of day, how often it happens, how bad it is and any other bits of information — the better.

Do you want to know if a potential side effect can be prevented or the risk of it reduced? Are you looking for immediate help because the problem is acute and causing real harm now or you are fearful it quickly could? Are you looking for integrative treatments? Really consider what is most likely to help you feel like your quality of life can improve.

I write down what I am looking for in my patient portal. I send messages to my health care team infrequently but knowing they can see my message ahead of my visit helps me feel more comfortable bringing up the topic during a sometimes-rushed appointment. I also usually text myself a message with any important questions and make use of an app called “My MBC & Me”.

Though it’s unlikely your physician can answer this question, a financial navigator at the cancer center or through your insurance can help you figure out what services are covered and for how long.

Some topics can be hard to bring up because of perceived stigma and embarrassment. This is where I find writing it down ahead of time and making sure the doctor has access to my note helpful. Most of the time, issues that I am embarrassed about are matter-of-fact side effects that my doctor has seen many times before.

Letting my doctors know what’s happening means that my health care and quality of life are better overall, with my expanding patchwork of experts and resources filling in for more structured supportive care. This perspective switch reminds me that I am in control of my care, which is a reminder worth getting.

Supportive and palliative care are critical for people living with cancer to better manage treatment-related side effects. 

Author | Martha Carlson

Breast Cancer Action Month

Even After a Cancer Diagnosis ‘Normal’ Days Are Ahead

How I Learned to Embrace the 'New Me' After Cancer

When You Have Cancer, Ask for What You Need