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.

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.

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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. 

When You Have Cancer, Ask for What You Need

Living with cancer is a mind game. There are times when I “win” — those days when treatment is just a fact of my life — and there are days when I “lose” to anxiety, sadness, and loss that has already happened and the anticipation of losses to come.

During this life with cancer, there have been years lived under the shadow of a kind of superstition. By talking about how fortunate I’ve been in my response, thoughts of bringing down bad luck would flit across the back of my mind. When I mention that I have had a tremendously good response to my first line of treatment, Taxol for six months and then only Herceptin and Perjeta, I’ll sometimes call myself lucky just because I want to acknowledge the seemingly random nature of whose cancer responds well to the offered drugs and whose does not.

I fell into a trap that if I did anything differently, even the most innocuous change in behavior, I simply would not continue to have the same level of success with my treatment, that I wouldn’t feel energetic enough to be an active part of my kids’ lives or, really, my own life. I wanted protection from the randomness of cancer.

I would be careful to select from the same small pile of clothing for treatment days, scan days, and oncologist-appointment days. After treatment, I would make a stop at the store and buy the same food item (an expensive pint of ice cream) to comfort myself even on days when ice cream was the last thing I wanted.

Over time, that small pile of superstition-approved clothing grew a little bigger as it became impossible to keep wearing the same shirt or pair of socks that were somehow knit together with my good scan results.

I started thinking more about why I found comfort in these habits and superstitions. I realized, somewhat late to the game, that it wasn’t superstition as much as it was creating rituals within this different life that I had found myself in. I thought back to the time when a friend brought me to a service at her beautiful Manhattan Catholic church. I didn’t understand most of what was going on in the service, but I appreciated the traditions that provided shape and meaning for my friend and the rituals that brought her back to more familiar footing even if just for a few hours.

In that memory, I realized that what I was doing with my superstitious use of clothing and food was actually creating rituals for myself in an unfamiliar land.

It’s so much easier to live with rituals in life with cancer, instead of superstitions, because it frees me from the unwelcome feeling that inconsequential choices — like which shoes I put on — have an impact on how I respond to treatment.

Instead of protection, rituals provide structure and a sense of control, however minor, which are two sorely needed qualities in an uncontrollable situation. They can be dogmatic, like those I observed at my friend’s church, or they can be fluid and flexible, which is how I have adapted mine. Superstitious protection may cross my mind as I choose what to wear on a scan day, but I consciously turn that around to consider how rituals and habits help me move through high-anxiety times. I think about how it’s OK to have something you “always” do and also believe it’s equally OK to not do it and choose something else, like a bike ride over that ice cream.

How one cancer thriver has found a small corner of control in an uncontrollable place. 

Rituals Make it Easier to Live With Cancer

There are practically endless ways to find people experiencing cancer — support groups, exercise classes, chemotherapy chairs, school playgrounds and even parent groups.

With social media, and now with so many activities going virtual (fancy a yoga class with a person living in Florida with metastatic breast cancer?), there are even more opportunities to meet people with whom you connect beyond the label of cancer.

At more than five years post-diagnosis with de novo metastatic breast cancer, when I look around at my friend group, I notice that I've added a very vocal, deliciously opinionated, group of women and men living with cancer who I "see" nearly every day on social media and, when I'm lucky, in person.

However, unlike befriending a fellow kindergarten mom who lives in the same neighborhood or the person in the next office, having cancer diagnosis doesn’t provide any clues about a person. I try to keep that in mind particularly on social media, where it is easy to be caught unprepared for information about a cancer friend that would probably prevent you from being a friend in "real life".

Here are some of my own personal protective pieces of advice if you’re looking to bond with friends with cancer:

I have several friends with cancer with whom I am close, but who disagree with my stance on multiple topics, as I do with theirs, yet there are moments when the perfect words of support come from them and no one else. When cancer is the strongest bond and you value the relationship, remember why you became friends and know that there probably will be times when you need to take a break from each other to maintain the friendship.

Even if you feel an instant bond with someone you met at a cancer yoga class, they might not feel the same. Cancer is a link, but it isn't a superglue. While you may be able to talk most days, your new friend may have responsibilities and interests that mean they are available only at limited, pre-arranged times. This is, frankly, the way of all friendships.

Cancer friendships can be deep and powerful forces that provide hope and solace and fun, but they can also end when one half of the friendship needs to make a change for any number of reasons. I was friends with someone who had cancer before I received my diagnosis. Although she was kind to me early on in my journey, she slowly stopped wanting to be around me. My world sometimes revolves around cancer, whereas she prefers to put cancer behind her. And, though that saddens me, I don't blame her. I understand protecting one's own mental health.

Not too long ago, in a Facebook group for people with cancer, a woman was looking to connect with people of a similar age and had kids at similar stages. I understand that too — I still think about how alone I felt when I could only find groups addressing moms of young children when I was faced with teenagers amid a metastatic cancer diagnosis. As it turns out, though, the people I turn to again and again in “cancerland” are not like me. I venture into friendship with people who have different types of cancer, and not just breast cancer. Some friends are quite a lot older; others are younger. Many have never been parents, and men figure into the picture as well. They are driven professionals, aspiring artists, homebound, and world travelers. When I think about this wide-ranging group, I tell myself how lucky I am that I didn't fall into a "Metastatic Moms Of Teens" group right from the start (though, hey, if you are looking for a gap in care, that one is still there).

Cancer claims many lives every day. Sometimes it takes decades, and sometimes it takes significantly less than that. Any circle of friends knows that a serious illness may strike, but when you're starting from the point of cancer, this loss is almost inevitable. It takes bravery to choose friends with cancer. It takes knowing that the love and joy you find far outweigh grief. Still, when a friend with cancer is dying, be thoughtful about your place in their life. Don't overwhelm family with your own grief. This is hard to remember when someone you love is dying, but it is the truth every time — give care and listen to those closest. It isn't their job to comfort you (you have other cancer friends for that).

A metastatic breast cancer survivor notes that It takes bravery to choose friends with cancer, but she stresses that the love and joy that comes with those friendships far outweigh the potential grief.
 

Author | Martha Carlson

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