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 

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.

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Articles

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.

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

I first heard the term “financial toxicity” years ago when I listened to a presentation for oncologists about why patients with breast cancer might not be following doctors’ orders. Then, and now, I’ve been fortunate to have insurance that covers my treatment medication completely and supports usually reasonable prescription prices for side effects. Despite this, even my relatively low costs add up quickly, and I have never calculated exactly how much money cancer has cost my family over the last 10 years of care.

However, when a family member was diagnosed with metastatic breast cancer earlier this year, I was suddenly thrust into a world where financial toxicity could easily be insurmountable. The most common subtype of breast cancer is estrogen receptor positive, occurring in about 80% of women and most men who get diagnosed. For them, many of the treatments are given orally rather than via an IV. The problem? Oral cancer drugs are not covered as well or as consistently as IV drugs. This means that many patients are paying out of pocket for high-cost chemotherapy drugs.

Over the years, I’ve lobbied for changes to coverage, so-called oral parity bills. In Illinois, where I live, oral cancer drugs are required to be covered in the same way as IV drugs. Where my relative lived — in California — there were more rules that ultimately meant she paid several thousands of dollars for one month of Ibrance (palbociclib), with her insurance agent saying that once she reached a point of catastrophic financial impact, the amount she paid would be much reduced.

Because I know many women who receive help from the pharmaceutical company that makes this particular oral drug, I reached out right away to see if my relative qualified for payment assistance. She did not, though she did come close.

This experience, watching a relative face costs that I did not, even though we both had been diagnosed with metastatic breast cancer and were receiving standard of care treatments, angered me. I plan to take every opportunity to talk about the need for federal legislation that provides true parity with IV cancer treatments, regardless of the patient’s stage, the type of cancer or where they receive treatment.

After paying for Ibrance and receiving the first medication shipment, she was able to take only one of the pills before cancer-related issues stopped that treatment. Not only had she just spent thousands of dollars, she would also never be using the drug. A couple of weeks after the treatment stopped, I started looking into how to donate cancer medications.

After almost 10 years with metastatic breast cancer, I know there is a lot of wasted medication. I know that in the U.S., we pay outrageously high prices compared to many other countries. I have heard all the arguments about why these high costs are necessary, and I reject them. But, practically speaking, I wanted to do whatever I could to help someone else have one month of a very costly drug. I chose to take direct action over just being mad about the situation.

There are strict rules for medication donations, of course. My first stop was Sirum (sirum.org), which has a straightforward and easy to understand website. However, after what my family had just gone through, I admit to balking at the $10 fee.

I eventually went with RemediChain (donatemymeds.org), based in Tennessee, who confirmed that the drug was acceptable and e-mailed a prepaid shipping label. Though based in Tennessee, RemediChain serves patients across the United States.

Since then, I have learned of MediCircle (medicirclerx.com), which operates in a similar fashion to RemediChain. Both of these organizations have guidelines for safety and dispensing, including eligibility requirements for patients in need of medication.

I don’t believe these donation systems are going to solve the financial toxicity experienced by far too many of us, particularly those whose best treatment options feature oral cancer drugs. Yet, I know that helping one person — even just one time — can be more powerful than you’d expect.

I am glad they are there to use, and my hope is that more people will turn to them with their unused, unopened and allowed medications. And while donating the medication didn’t dull the pain I felt knowing my relative wouldn’t receive standard of care, it did give me a sense of purpose and usefulness toward others at a point when I really needed it.

A patient with metastatic breast cancer confronts financial toxicity and finds a little glimmer of hope through donating cancer drugs.

Yes, You Can Donate Many Unused Cancer Drugs

I’ve been asked many times over the past nearly ten years about what I eat now that I have metastatic breast cancer. It’s a difficult question for me because I grew up in a family that had issues with food, at least from my perspective. I remember being encouraged to eat raw egg yolks because they would provide more protein for my competitive swimming, eating only prunes and, I think, pineapple when my mom and one sister and I started the Beverly Hills diet and cartons of something like SlimFast. The focus on food as both punishment and reward, with weight the ultimate judge, colored my eating behavior until I was very much an adult.

It took me a long time just to learn that I could eat what I wanted to eat, and even longer to be able to eat what I wanted in front of people I love.

So it’s understandable that I bristle when asked about my diet and cancer. The question implies that food is the solution; that I can control the uncontrollable simply by eating or not eating something.

Still, it’s no secret that eating less processed food does serve everyone well, including many people living with cancer. There is legitimate research happening now to try to better understand how certain diets, whether Mediterranean, low-carb or ketogenic, might be especially supportive for some types of cancer.

But for me, any changes to my diet are less about losing weight and not at all about reducing cancer risk. What I want is to be able to maintain my ability to move and do things for as long as possible. I am open to the idea that diet can help with that. So, this past spring, I participated in a program offered by Living Beyond Breast Cancer with dietician Rachel Beller. The program centered on eating more fiber (which can be unacceptable with some breast cancer treatments, but not with mine) through seeded breads and grains, vegetables, fruits and beans, as well as other ingredients.

I almost didn’t sign up for the program because I knew that it could cause trouble given my diet history, where an all-or-nothing attitude meant that I might be “good” for a bit but that would be followed by excessive “bad” eating. Unhealthy and unacceptable for me physically but also emotionally.

I did sign up, though, and I’m glad I did because it brought home to me that the large steps about healthier eating behaviors I took before getting diagnosed with cancer needed a little updating. Sometimes it’s good to be reminded that just because you have stage 4 cancer, you can and need to take care of yourself outside of cancer too. I think I look better with these small changes and I know I feel better but even with that reinforcement, it is hard to turn a “change” into permanence. I’m very much only in the first part of this process.

This summer, when I was asked a few times about my revised eating habits and if it was because of cancer, I started to take a breath and answer as honestly as possible. The fact is that everything in my life is impacted by cancer but the choices and changes I make are less driven by cancer these days than by the simple desire to feel good in my body. Sometimes cancer is just sitting in the backseat, along for the ride.

A patient with metastatic breast cancer finds that sometimes a single small step leads to unexpected improvement.


Making Diet Changes While Living With Metastatic Breast Cancer

“How do you do it?” I’ve been asked this question in many ways over my years living with metastatic breast cancer. When I’m feeling anxious or a little “salty,” as my kids would say, I inwardly roll my eyes and bite my tongue.

The short story: I do it the same way we all do things, by waking up and getting to it. Gratefully, I am able to actually answer in a kinder manner that may help the person who is asking, whether she’s a patient, a caregiver, or— as has happened to me — one of my own doctors.

The fact is that people living with metastatic cancer don’t have a choice other than Just. Do. It. If we stop, we aren’t likely to be here much longer and, frankly, even when we do everything in our power, we may not be here as long as we’d imagined.

People who enjoy fables will recognize that I have spent the last nearly 10 years of my life living with the sword of Damocles hanging overhead, coming closer but not quite fatally nicking me. Between blood tests, scans, EKGs, an unending supply of doctor appointments, and, of course, treatment every three weeks, the sword sometimes feels more like a piece of paper attempting to take me down through paper cuts. I am one of the fortunate few whose metastatic cancer has been brought under control by drugs and genetics.

My “secrets” are no secret. I do the things that we know are helpful but that can be hard to maintain over time:

Acknowledging living with cancer and all it entails is a bad hand to draw at any age. Basically, it stinks, but then I move on.

Accept that I am doing my best and refuse to blame myself for things that are out of my control or for making choices that make me happy as a person, even when my healthcare team might prefer something different.

Don’t keep it inside for long. Much to the occasional dismay of the people closest to me, I have learned to “feel what I feel” and own it.

Try to schedule unpleasantness as much as possible. For me, this can mean squeezing in multiple appointments in one day or one week so that the rest of the month can be mostly free of cancer stuff. This might not be your way! Maybe you like to spread it out. The point is to try to make the schedule work for you.

Schedule pleasantness, too I took a page from one of my sister’s and now I actively look for flights to my family and friends well ahead of time; I talk to my husband about nearby places that might be interesting and make plans to go; I sign up for workshops and classes that interest and challenge me.

I maintain that I am here and capable even when—and this is key—I am sad, anxious or scared. In keeping with the “I feel what I feel” mantra that keeps me going, I have learned to accept that we feel more than one thing at once. This idea is talked about quite a lot in my circle, often credited to grief counselor, Kelly Grosklags, and is the idea that we need to live in “both/and” spaces rather than “either/or.”It’s why I and others get up in arms when we are told to “be grateful,” as though we can’t feel gratitude alongside sorrow.

Make friends who lift you up, make you laugh, who like you for who you are, and bring you along on their adventures. To all those who have lived this cancer-life with me in this giving and honest way, I send all my love. 

I’m approaching 10 years with stage 4 breast cancer, and this question tops the “most asked” list.   

Martha Carlson

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

Yes, You Can Donate Many Unused Cancer Drugs

Making Diet Changes While Living With Metastatic Breast Cancer

Life With Metastatic Cancer: How Do You Do It?

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