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.

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.

Articles

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.
 

Advice on Making Friends in A 'Cancer World'

How does someone diagnosed with a chronic disease die of that disease within two years? On social media in mid-July, and especially in breast cancer Facebook groups, there were a lot of questions about how it was that actress Kelly Preston could have been diagnosed with breast cancer two years ago and already be dead because of it.

I don't know if her breast cancer was caught early. I don't know if the two-year timeline is how long she lived with metastatic cancer after an early-stage diagnosis or if she was diagnosed stage IV from the get-go.

To me, none of that matters. What matter is this: In the US alone, the estimated number of 

deaths due to breast cancer every single year

 is over 42,000 and people with early-stage breast cancer that is considered cured remain at risk (estimated to be 

) of metastatic spread to bones, lungs, liver, brain, etc, regardless of the treatments they received, regardless of how well they eat and how much they exercise.

So why doesn't the general public understand that breast cancer continues to kill in large numbers? How should the general public be expected to understand when people living with breast cancer are frequently unaware of the realities of stage IV breast cancer?

I am, of course, disappointed that Ms. Preston didn't share her story. But no one, least of all a person dying of cancer, should be told what to reveal and how to do it. If she didn't want to share her story, that is 100% her choice. But that does not excuse the journalists and healthcare experts who covered the airwaves on television and on social media with the focus on urging women to get their mammograms.

Yes - get your mammogram. Yes - if you have dense breasts, know it and get the right screening for you. Yes - ask your healthcare provider how to do a monthly exam. Yes - know that if you're a man, you can get breast cancer and check any suspicious changes. But also know and share the facts about metastatic/stage IV breast cancer. It doesn't help anyone, except maybe people who profit off fear, to silence and sow confusion around breast cancer.

Don't tell the public or your patients or your friends that breast cancer is now "chronic" even if, by the 

, it is. Doctors and journalists and media experts have a responsibility to use words in the way that their audience understands them. Chronic to me, and to my friends, means having a condition or illness that has a treatment I can stay on for years on end, to my full life expectancy or close to it. It doesn't mean that I can anticipate treatment with progressively harsher drugs, with progressively worse side effects and collateral damage, and 

 die early, decades before what would have been expected.

Don't tell me breast cancer is chronic when I open up my computer every single day to deaths and cancer progression of people like Kelly Preston, who died at the absurdly young age of 57 despite her wealth, despite her connections, and despite her care.

According to the American Society for Clinical Oncology, "About 6% of women have metastatic breast cancer when they are first diagnosed. More research is needed to determine how many people with non-metastatic breast cancer later develop metastatic breast cancer." The 5-year survival with metastatic breast cancer is just 27% for women and 22% for men.

Giving hope without facts is only spreading false positivity. Saying that metastatic breast cancer is "treatable but not curable" without providing the statistics about survival and without commenting on the harsh realities of ongoing treatment is harmful. The result is the huge blind spot that was revealed in the public's shock at Kelly Preston's death.

Breast cancer continues to kill more than 115 people every day in the US, year after year. The same as it has done for decades. More money, more research, better treatments for stage IV - these are the needs everyone should hear about when talking about death from breast cancer. Not just mammograms.

A celebrity death reveals how little we really know about breast cancer.

Author | Martha Carlson

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