When Portland, Oregon, resident Lisa Heathman fell off her bicycle and took that tumbling fall into the stream, her life changed. It wasn’t the dislocated shoulder – the result of the accident – it was the discovery that after years of annual mammograms and false negatives, she would be diagnosed with Stage IV breast cancer. Lisa faced twists and turns. Her diagnosis was the beginning of a journey of trepidation and hope.

Amid her surprising news, she discovered the Vancouver, Washington-based Pink Lemonade Project, a source of peer support and empowerment for breast cancer patients. Through their guidance, she rediscovered the strength within and built a new community of friendships.

This is the story of how Lisa Heathman turned medical lemons into “pink lemonade” and how she continues to navigate the maze of breast cancer decisions, drawing on the support of the patient advocacy community created by the Pink Lemonade Project. Her guiding mantra: “Get busy living or get busy dying.”

Gil Bashe:

I‘m going to jump in, and we’re going to explore your story because it is unique to you, and unfortunately, it’s not unique to women. It’s become a medical self-health tradition for women to have an annual mammogram, and I imagine that’s something you’ve been practicing for some time.

Lisa Heathman:

I always made a point of getting my mammogram. I got them regularly, and the diagnostic center always used to send me that letter afterward saying I have dense breast tissue, so the scan techniques were not nearly as accurate. A routine mammogram looks dark, and then if there’s anything alarming, it looks white. On a woman with dense tissue, everything looks white. It’s hard to find an anomaly in it because of the white-on-white. That is core to the problem. Because even though I was getting those mammograms regularly, they didn’t see the problem.

Bashe: 

You know, for women who have dense breast tissue, and it’s not a small number. It affects cardiovascular scans and mammograms – leading to the danger of false negatives.  I hear about this too often. 

Heathman: 

It’s pretty darn common.

Bashe: 

It’s the equivalent of going through the motions but not having a mammogram; It’s a public health risk worthy of greater awareness and physician-patient conversation.

Heathman:

Exactly. According to my doctor, I’m doing what I needed to happen from a self-care standpoint; there wasn’t a family history. My grandmother did have breast cancer, but my grandmother is just one-quarter of my genes. My physician didn’t regard me as particularly high risk. So when I kept getting those notifications that the screening tool wasn’t wholly accurate (and we talked about this for two years in a row), he told me not to worry.  Accessing advanced screening is challenging; the insurance companies wouldn’t cover it. That meant I had to get the screening and pay out of pocket. On top of that, I would have had to do that every year. We’re talking about thousands of dollars out of pocket.  

Bashe:

Insurance is a little bit like the law of averages. They think, “We’re not going to cover this because the chances of her having breast cancer are pretty slim, and if we cover it for her, we’ll set a precedent, and we’ll have to cover it for everyone. Let’s pretend we’re going through the motion of doing breast cancer screening.” 

Then boom, something happens.  There is something suspicious when you call up. I imagine your doctor said, “Well, come on in, and we’ll talk about it.”

Heathman:

Something you said reminded me of something I think is essential to share. And then, I’ll get to how I found my cancer. The other thing that’s recommended is that women do self-exams.

First of all, I breastfed both my kids, and I always had trouble in my left breast with clogged milk ducts and all kinds of lumpiness, nothing hard, nothing like they always used to say. If you’re feeling anything that feels like a pea or a pebble, that’s alarming. You need to be checked out. But if everything feels like it always has, you’re probably fine.

It always felt normal. My left breast was lumpy because it had been lumpy ever since I breastfed my kids. Nothing felt odd, and I never did have that hard stone or pea-shaped shot that they always say it feels like.

Bashe: How did this surprising discovery unfold?  How was this discovered?

Heathman:

How I found my breast cancer was a stroke of luck, which doesn’t sound like a stroke of luck when I tell you this story. My partner Tom and I went mountain biking. We were on a camping trip up near McCall, Idaho, mountain biking almost every day. One day, we decided to take the mountain bikes up to this lake – there was supposed to be great fishing up there. It’s five miles on the single track. There was one place near the lake where you had to cross a creek on a little bridge, and I fell off the bridge into the water! Fortunately, it was September, so the water level was relatively low, but the bike fell on top of me and pushed me into a tree trunk. I dislocated my shoulder.

When I got back to Portland, I told my doctor what had happened, and we decided that I should do a course of physical therapy because it was still painful. The physical therapist and I worked on this for about a month. Instead of getting better, the symptoms got worse. My physical therapist said I should get an MRI.

I had to see the doctor for an MRI, and he said: “It’s been a year since I’ve seen you, so you might as well just come in.”

That was the luckiest thing ever because when I went in 10 days later, he did the usual check of the lymph nodes. He was doing the examination and said, “How long have you had this lump under your left arm?” I said I didn’t know I had a lump under my left arm. I can hardly reach it right now because my right shoulder was so screwed up from the accident. He said, “I feel a lump under your left arm, and we need to get you in for an ultrasound.” That was the beginning of the odyssey of finding out I had breast cancer; it was just a stroke of luck.

Bashe:  I don’t know if it’s a stroke of luck, but it’s like, “How I dislocated my shoulder and saved my life.”  From the moment your doctor said, “What’s this lump underneath there?” What went through your mind?

Heathman: 

Honestly, I was not terribly concerned, and I’ll tell you why. I’ve always been very active and very healthy, and nothing traumatic or awful health-wise has ever happened to me. I first talked to my physician sister, and she said, “Well, it could be many different things. Let’s not get too worried.”

So I wasn’t upset. I was like, I’m sure it’s nothing, I’m sure it’s nothing, but it wasn’t nothing. I went in for the ultrasound. I was lying on the table, and it was quiet. I remember thinking I was tired. I could almost take a nap. She went away after she was done and was gone for a long time. I thought, well, that’s odd. Then the doctor came in, sat down, and asked me all these questions. “Have you been feeling okay? Are you losing any weight?” All of a sudden, I began to perspire profusely. Suddenly, I thought nervously, “Oh goodness, oh gosh. What is happening here?” My stomach was immediately nervous. “Uh oh. This is not nothing.”

All of a sudden, I was very, very afraid. I had never had cause from a health standpoint to be so scared. I was terrified, like we were not talking about a nothing thing here at all. He sent me then for a biopsy, I believe.

Bashe:

Did he say at any point you might be looking at cancer?

Heathman:

He did. That was the root of all those questions: are you feeling okay? Have you been losing any weight? I feel fine. And no, I have not lost weight. But I was just terrified. Suddenly, it was like it was real. I went in for the biopsy next, and it came back positive for cancer. I then had an MRI, where they could first visualize it. That was the first time anyone had seen that there was a tumor in my breast. It appeared pretty good-sized and had probably been growing there long.

Bashe:

The challenge with the diagnostic system, particularly the mammogram, is that we get into a “check the box” mindset, as opposed to the need for your doctor, other doctors, to say that if someone has dense breasts, we have to reject the mammogram approach, have a diagnostic procedure, and ensure coverage. At least reimburse women for the scan every other year.

Heathman:

You could alternate. Over the years, I’ve often thought, you know, it would have been great if every other year I had a mammogram one year and an ultrasound another year, and they could have alternated. Ultrasounds are not expensive; they’re standard.

Bashe:

A part of it is that the payor contracts with the radiology center to have mammograms done at a base price. Let’s say the insurance company will tell you to go to one of three radiology labs in your area. They’ve created a volume discount price. That discount takes precedence over your specific physiological or biological needs. That’s the challenge we face in the payor system: health for everyone, but not necessarily health for you.

Heathman:

Health for the average baseline. I learned from the Pink Lemonade Project that in the Northwest, one in seven women will be diagnosed with breast cancer at some time in their lives. Nationally, it’s one in eight. That’s many women.

Bashe:

How did you get involved with the Pink Lemonade Project?

Heathman:

That’s an interesting story. When I was first diagnosed, one thing that seemed right was to join a support group, so I did.

It was through my hospital, and I hadn’t even lost my hair yet. I was super early in the process. I think I lost my hair after my second or third chemotherapy round, but I was in the support group even before that –  just diagnosed. I remember my first support group meeting, which was not a Pink Lemonade support group meeting. It was just through the hospital.  It wasn’t completely satisfying, but of the eight women, one woman, Susan (Susan Stearns), well, we hit it off and became friends.

Susan got the job of CEO of the Pink Lemonade Project. I was introduced to Pink Lemonade through her and her fortune in working with this amazing organization, which drove the conversation and possibility.

Bashe:

The personal connection was very important here.

Heathman:

There’s a silver lining in this cloud, and that silver lining was Susan and the Pink Lemonade Project. They’re based in Vancouver, Washington. I live across the river in Portland, Oregon, and Susan Komen is a well-known breast cancer charity in Portland. What a lot of people don’t realize is that Susan Komen is no longer providing local support. They are only a national nonprofit now. The local programming in almost every community had to be pulled.

It is up to local organizations like the Pink Lemonade Project to pick up the slack and provide those programs locally that Susan Komen could no longer fulfill. Organizations like the Pink Lemonade Project must create opportunities and support for women seeking local support.

Bashe:

You had some difficult decisions to make then. You’re diagnosed with breast cancer. It sounds like chemo and radiation were part of the decision-making process, maybe more. Tell me a little bit – not about the medical stuff; I understand that, but the sense of how you felt at that moment and what role the Pink Lemonade Project played in getting your perspective. It sounds like you’re very self-aware and in touch with other people, but you’re now in what I’ll call an “extreme situation.”

You enjoy bicycle riding, fishing, hiking, skiing, and the great outdoors. Your sister is also an official hand-holder. You have a medical guide at your beck and call. Tell me what role the Pink Lemonade Project played in your life and what role you played in their life.

Heathman:

From the standpoint of an organization like the Pink Lemonade Project, I was very fortunate that I didn’t need to take advantage of some of the programs that Pink Lemonade delivers to women or people with breast cancer — because men get breast cancer, too, as you know.

Pink Lemonade provides practical support, transportation to appointments, treatment options, care for lymphedema and swelling after the lymph nodes have been removed, support groups, and valuable information, such as whether a woman needs a wig because she’s lost all her hair. I took advantage of some of the things that the Pink Lemonade Project provides.

I do have a good employer, a car, and good insurance. I had all those things covered. I have a really good support system. You could argue there wasn’t much I needed. What I found that I took advantage of was the support groups. They have a metastatic breast cancer support group. It’s geared mainly toward women who have a stage 4 cancer diagnosis, such as me. They are women who are in many ways in the same boat that I am in, and their questions are the same questions that I have, and the kinds of experiences they have are the same kinds of experiences I have.

Many women are older, have retired, and are no longer working. But not all of them – many of them are young women who are raising families. Many of them are younger women who are still working, trying to have a career while they’re going through treatment. That was important to me because I am still working, and I continue to work through treatment, but it hasn’t always been easy.

Having other women to bounce ideas off and get good advice was unbelievably important. The other important thing about being involved with an organization like the Pink Lemonade Project is that you are surrounded by women and people who hear what’s on the cutting edge of treatment. When you have a stage four diagnosis, your doctors, you, as the patient, and your family must understand that the breast cancer community, the medical community, is constantly coming to the table with new treatment ideas and new treatment options.

In time, treatments may stop working for a person, and they may need to go to whatever the next treatment is. And that’s incredibly important for someone with a stage four diagnosis because the treatment that I’m on may not always work. So that’s important, too.

Bashe:

As we spoke, I remember the first time you had a very reflective way of looking at this. You know you have a philosophical strength about life and being present. I also sensed you were quizzical about the future. There’s an authentic presentation when you speak. I’m curious if that mindset is present in your conversations with other members of the Pink Lemonade community and if the conversation is equally sharp.

Heathman:

That’s why there’s such a striking difference between the people I’m now talking to within support groups and that first experience, which was very negative and unsupportive.

The women in the support groups are very practical. It’s odd, but you rarely encounter a person in these support groups saying “Woe is me” or wringing their hands. By and large, they have been the most positive, gracious, giving, extraordinary women, people, but mainly women, and that’s what I needed in a support group. I needed to be surrounded by other people going through the same situation but meeting it with this: “We’re going to get through this.”

One of my favorite movies is The Shawshank Redemption, and Tim Robbins, one of the main characters, says a line that goes something like, “Get busy living or get busy dying.” I think about that all the time – here I am, and this is what I’ve got to get through today or this week, or this surgery or that treatment; I’m going to get busy living because it’s the only choice I have.

I’ve been surrounded by people making that same choice, which I needed in a support group. There’s no Pollyanna; not many women say this is not a big deal. It’s a huge deal. But they’re practical about it; maybe we’re all good at compartmentalizing it. This is a bucket that’s over here. This is another bucket that’s today. This is another bucket that’s tomorrow. I am still determining what the future will bring, but worrying about it doesn’t change it.

Bashe:

The sharpened sense of mortality creates a vibrancy about life. You might not have taken special vacations beforehand, saying, “Oh, I don’t know if I want to spend the money right now.” Now you say, “I think we will take that vacation. I want to go there and see that. I want to do that with you.” Does that play out from time to time? I don’t know about 20 years from now, but I do know right now.

Heathman:

It’s an excellent question. My version of vacation is being able to get outdoors and do the things I love, whether skiing, biking, hiking, or fishing. You’re right—I find it easier to say yes to those things because I don’t tend to talk myself out of them like, “Oh, you shouldn’t” or “It’s too expensive.” Life is short.

Those kinds of things are things that I need to experience, things that I need to do. This sharpened sense of mortality goes beyond just thinking about time away or vacations. It just factors into my overall decision-making. Are we going to build that addition on the house? My car was eight years old. Am I thinking maybe it’s time to get a new car? And it’d be easy to say I might not need that new car. Does that make sense? But if I decide that I don’t need that new car, I’ll not be getting busy living.

Bashe:

That line you shared about the Shawshank Redemption is true – “Start living.” You can think about the clock stopping, running out of line, the click, click, click. The clock is still working, and I don’t want to break down on the side of the highway. Why not enjoy the new car now?

Heathman:

Exactly. Why not do it now? Because you may not have forever. And to your point, Gil, we all imagine ourselves immortal until we have a significant health crisis. It’s too terrifying to think of the alternative, and most of us don’t until we have to. But in no way has it consumed me. I’m not going to say I never think about it. I think about it. I’ve even explored some things that are specific to that. But it isn’t as though I’m consumed by it. I don’t live my life like that.

Bashe:

“I’m here, and I need just to enjoy the fact that I know I could be elsewhere, so to speak, but I have a certain sense of strength and understanding that lean into the here and now.”

Heathman:

Some days are hard. There are things about being in treatment that are hard, and sometimes challenging things happen that are work-related or what have you. Then, I’ll join a support group, and I’ll be able to talk about what is happening. Someone will have had a similar experience, and someone else will have a funny thing to say about it.

Before long, I found that I was happy I was here and that they were here. There have been times when someone was not there. In particular, one woman is no longer a part of our support group because her cancer came back, and it came back with a fury, and she died. I still miss her. She was such an incredibly kind, caring, altruistic person. In support groups, you meet people who may show you something you didn’t see, something that feels like someone making your day better.

Bashe:

Well, they say you’re exceptional, and those that do are beyond spot on. The reality is that you’re in the midst of an adventure in which the ending has not been written, and you are very present about where you are and what you’re feeling, but you’re very much in harmony with other people. The support group, I think, the Pink Lemonade Project community, has brought out something that was always within you: the understanding that we need each other.

Heathman:

Absolutely. If there is a silver lining in all of this—and some days, it’s hard to find one—I have a much different understanding of others and what others want and need. It’s changed me. There’s no getting around the fact that cancer has changed me, and I think that cancer has changed me for the good as well.

I cannot say enough about my experience. Again, it is not always pleasant, and it’s not fun, but I feel so supported. I think back to that woman that night who I met who had nothing good to say about her employer, and I think, Oh, honey, I wish you’d had a very different experience, like I’ve had, of what real support feels like because I think she was bitter.

Bashe:

You know, it’s a two-way street. You’re an incredibly inspiring, uplifting person who understands and speaks about the importance of patient support groups like the Pink Lemonade Project.

Your experience is distinctly unique. You are an incredibly inspiring person, and the fact that you welcomed this special community into your life speaks volumes about your ability to recognize this level of life challenge is difficult enough – but going it alone adds another complexity to the health struggle. I think many people need people like you, Lisa; they need to read about people like you because it gives them a sense of hope for this day and tomorrow. Thank you for this time.

We often read about people confronting cancer diagnoses and their worries about therapy and survival. We read about varied patient advocacy and support communities. Lisa Heathman and the Pink Lemonade Project offer another perspective—how friendship forged through this difficult journey leads to better medical and emotional care. A key lesson is that people with dense breast tissue should take advantage—advocate for advanced screening!

You can connect with the Pink Lemonade Project, which offers support to men and women, through its website and follow its updates on social media.