KSC — How did Hope Scarves come about?

LM — I was originally diagnosed with breast cancer when I was 30 years old and 7 months pregnant with my second son, and as all cancer diagnoses go it was an incredibly overwhelming and terrifying time for me and our family. A friend of a friend sent me a box of scarves and a note that said, “You can do this.” This simple box full of fabric meant so much to me in the midst of my treatment. It was incredibly practical. I hadn’t given much thought to what I would do when I lost my hair from chemotherapy. I was so focused on a healthy pregnancy and really consumed with the diagnosis. The overhwhelmingness of the diagnosis.

It was also really inspiring. Just knowing this other young mom that had faced cancer, and was doing well, and had passed on her encouragement to me, a perfect stranger, paved the way. She had never met me. She had taken the time to reach out and encourage me. I was just so touched by that. Every time I wore Kelly’s scarf, I just felt the strength and love of this other person who had been there.

I went through chemotherapy. I had four rounds of chemo while I was pregnant with Bennett. It was an incredibly devastating experience for us. I was an active and healthy person. I practice yoga. I run. I eat healthy whole foods. Here I am in the midst of my pregnancy pumping toxic chemical directly into my body as I feel our unborn child kick. It was a very overwhelming and completely alternative reality we lived in for over a year. I had chemotherapy and six different surgeries including a lumpectomy, a double mastectomy and reconstruction. I was in treatment for about a year.

When I came out of treatment fog, I reached out to Kelly and asked if I could send the scarves back to her. I thanked her for sharing them with me. She said just find somebody else who can use them, so I took them to a conference. I met a woman named Roberta from Pittsburgh, and I gave her the scarves. She took off her itchy scratchy wig. I showed her how to wear a scarf. She was so touched by this expression of support from a stranger. And I realized how meaningful it was not only to receive them, but also to pass them on.

When she finished her treatment, she sent them back to me. My family had since moved to Louisville, Kentucky, and one of the first people we met was starting treatment for cancer. I took the scarves to Brook’s house. I told her about Kelly. I told her my story. I told her about Roberta. We laughed through our tears about what it is like to lose your hair, and facing cancer, and being a young mom, and our shared experience. I realized how much strength and love and beauty these scarves carried with these stories of these women.

I thought what if I could do this in a bigger way? What if instead of me personally sharing these scarves with people I connect with, if I could help create a way for other people to do the same thing, and we could create a strong network of love and support and a practical resource for patients going through treatment?

Hope Scarves was born of that simple idea. It started in the spare bedroom of my house with my two-year old volunteer by my side. I wrote a business plan. I created a website. I became a 501c3 non-profit organization. I started gathering people around this idea who wanted to help, wanted to volunteer, wanted to share their scarves and their stories. It grew with the organic love and interest of supporting and encouraging people.

Now, 7 years later, we are a dynamic non-profit organization. We have sent over 10,000 scarves to every state and 23 countries. Our scarves have supported people facing over 90 different types of cancer. Our oldest recipient is 97 and our youngest is 2.

Every scarf that goes out carries the same simple idea that the very first scarf did that I received from Kelly. Each scarf is wrapped with a survivor story, scarf tying instructions about how to wear it, and information about Hope Scarves. It also includes an invitation to wear the scarf as long as you need, send it back to Hope Scarves, and add your story so that we can dry clean it and send it out to another person and carry those two stories. Every time it comes in to Hope Scarves and goes back out, we add the story of the person who has just worn it. Some of our scarves carry 4 stories. They have gone to multiple people. We have affectionately become known as the sisterhood of the traveling scarves.

Scarves are distributed in three ways. Individuals can request a scarf for themselves on our website or by calling our office themselves and get a Hope Scarf at no cost. We have a gift scarf program where you can send a scarf to someone you know going through treatment and include a personal message that we put right inside the package and send directly to the patient. We also have a partnership program where scarves are shared at the point of treatment through hospitals and other cancer support organizations where patients are already going for care and support. Instead of them having to find another resource or go online and request it, we have it right at their hospital and they get it as part of their care. We have 18 partnership programs across the United States right now, and we are really eager to grow that program and get more and more scarves in locations around the country.

KSC: What made you want to share Kelly’s scarf?

LM: Much like she found strength and healing in passing them on, I felt that same motivation. These scarves had served such an important purpose to me while I was going through treatment. I felt like it was my way of finding confidence and beauty in this time that is ugly and dark and scary. I just felt so awful. These scarves could really not only physically brighten my day, but also brighten my spirit.

I also felt like I was done with them and that I wanted to pass them on and give that same strength and love and support that had been given to me throughout my treatment. I could pass them on to someone else, for someone else to feel that encouragement that I did the first time I got them. I could tell my story to someone else and that would bring them inspiration. It was a healing part of the experience.

What has been so neat. Even as we have grown, and we expanded our operation, and we have become an organization (Some of that becomes kind of mechanical. We send 50 scarves a week. We have to have efficiency standards. We have become a business.) that very same feeling exists for a person when they get that feeling of support and love from a stranger. In the wearing it and sending it back, that they can feel that same encouragement and sense of purpose to be able to take what they have been through, and dealt, and be able to then use that and use the strength that they have found to encourage someone else. It really is a healing process to take something scary and frightening and turn it in to something beautiful. It is an empowering experience creating Hope Scarves. Not everybody can necessarily do that, but they can find that sense of fulfillment and empowerment in sharing their story and sending it on to someone else.

KSC: Think back to 6 years ago, you could have turned inward and did not. How do we help others not turn inward?

LM: When I experienced my reoccurrence. Seven years after my original diagnosis. Hope Scarves was doing great. We are rockin’ and rollin’ and growin’. My kids are healthy. My husband’s job is expanding. Life was great when I started developing back pain. Then I realized through an MRI and biopsy that I have metastatic breast cancer. Cancer had spread to my bones and I am a Stage 4 metastatic patient. I am thrown back into the world of being a patient. I am so blindsided by this idea. I thought I had put cancer behind me. This is a chapter that I had closed. I had built this organization. I was doing good work and then my legs were swept out from under me in a so much more tragic way than even my first diagnosis. When you are metastatic and you are Stage 4 it is such a different conversation. There is not a cure. There is not an end treatment. You are in treatment the rest of your life. You hold on to one therapy as long as you can until the cancer starts growing, and then you move to a different therapy, and you hold on to that as long as you can. Then eventually, the treatments become more and more toxic and harder to handle until you run out of options. Life expectancy for metastatic breast cancer is 2 to 3 years. I am now facing this reality.

How did I not turn inward and crumble? In my earlier diagnosis it was obvious. I am just a very outward person. I choose joy over hate. I laugh more than I cry. I am an outgoing person. I love to meet people and talk and understand people’s stories, but when I faced my metastatic diagnosis for the first time in my life I went into a very deep dark depression. I never really understood what anxiety meant, or depression, it was not something that I really struggled with before. I went to this incredibly dark sad place. I realized I had to look differently at what hope meant to me now. My prior definition was that hope meant you beat cancer. You put it behind you. You could move on. That is what we were doing. We were helping people face cancer, share their scarves and stories, and move on with life. That was not going to be my reality anymore. It made me realize that for so many people facing cancer that is their reality. It is not a kind of one and done kind of thing. It is a lifelong chronic experience. For 111 women a day with metastatic breast cancer, it is a death sentence. 111 people die every day of metastatic breast cancer.

I had to rethink how I defined hope in my world and in our organization. We could look at hope as a daily, an hourly, a momentary choice. To choose hope and find joy and gratitude in much, much, much, much, smaller moments. That was a really big turning point for me. Instead focusing and worrying about this perceived future of when I would get sick, of when this drug would fail, when I would die, I had to live in right now. I had to ground myself in today and in the present. That was a really, more than anything over the past ten years that I have been a cancer patient, that has been the biggest and deepest realization for me is living with intentionality and gratitude in a much for purposeful way. I am aware that I am dealing with a very dangerous disease, but today I choose joy. I laugh more than I cry. I surround myself with beautiful people and friends and family and activities that bring joy into my life, and are life giving instead of depleting. That is not how I have always lived. I am a very type A person. I have my checklist. I like to check things off. I am competitive. But I have found this balance that some things are out of my control.

I don’t have time for things that are going to drag me down. Sometimes I think I should be doing this. I should be doing that. I ask myself does that bring my joy. Obviously, I have to pay bills. I have to take my car to the mechanic. I have to fix the stupid whatever in the house. I am not pretending my life is all rosy. There is crap in it, and some days are really hard, but I just try to ground myself.

For instance, I have this really big house project. My husband and I are renovating a 130 year-old farmhouse. I feel like I am stretched thin. I have to schlep my kids to all their games and practices and try to pick out all this stuff for my house. What an incredible opportunity I have that I am lucky enough to renovate this farmhouse. This should be fun and joyful. What can I do today? It is pushing me and my schedule is a bit stretched, but I ground myself in gratitude and intentionality. Like today, I was like, I have got to go to yoga. I am going to go to class this morning and just breathe and refocus. I am late for work, but I needed that. I make choices that are way more about prioritizing my physical, mental, and spiritual well-being than I did before I got the metastatic diagnosis. Why does it take a terminal diagnosis for women to take care of themselves? We need to take care of ourselves. It is really important.

KSC: You ground gratitude in intentionality and presence. I want to hear more about the complexity of gratitude.

LM: It is about finding things that bring joy and meaning to your life, and that does change. Sometimes it is like truffle fries. Sometimes it’s time with your kids. It can be something simple. But it can’t just be the simple because that is fleeting. It can’t be things. It can’t be the things that don’t carry the deeper weight. Things that really touch your soul. It has to be things that are bigger than you. I know for me so much of it is relational. I love relationships. I love people. I love friends. I love time with the people I love. I also say it is nature. I savor the experience of being in nature and being free.

Like I was telling you we have this farm we are renovating. It’s called K-M. In a cattle brand, the bar is the line connects two names. Kent is my husband’s family, and my family is MacGregor. The line underneath says, “All good things are wild and free.” I lost it after my metastatic diagnosis. I lost the ability to be wild and free. To spontaneously laugh. I lost a sense carefreeness. I love the feeling of being wild and free, and for me that happens in nature. It happens when I am running. It happens when I feel physically strong and push my body. I feel healthy and I want that for my family. I want that for my kids. I want them to have that same sense of being wild and free.

KSC: Can we learn that? Can we learn to live in that? How do we do that?

LM: I think we can. Obviously as a mom raising these kids, I hope I am planting these seeds. That even though my 13-year-old rolls his eyes, it is going in there and the seeds are growing. I think some of this stuff is learned through your experiences. While I don’t ever wish heart ache or tragedy on anyone, I think adversity builds character. Through adversity you find gratitude. I have learned this through my experiences. My parents taught me. We valued this growing up, but I did not really truly understand it until I had experiences that helped me. It can be learned through your experiences. It can be learned through your experiences, but it is also a little bit like a muscle. It has to be worked and strengthened. You can lose it. It can weaken if you are not focused on it, and it is something you are working at. I listened to someone talking about balance. She had said balance is a verb. It is not something like, “Oh! Now I am balanced.” It’s fleeting. It is a momentary thing. That is the same way I feel about gratitude. While you might feel it or get a glimpse of it. You might also fall out of it and then you have to really focus. “What is important in this situation?” “How do I stay in touch here and work at it?” It does not come like, “I have brown hair, and I am grateful.” I might have brown hair, but I have to work at being grateful.

KSC: I am reminded of the researcher with whom I spoke who studies the impact of a gratitude practice on people who are elderly.

LM: It is interesting to hear that thought about the elderly because facing a terminal diagnosis is a similar perspective. It is clear as you watch your friends pass away, and you watch people in your support group get sick, and you know you have the same exact disease as they do. You realize how fragile life is and how tomorrow is not guaranteed to any of us. You realize how close death might be and you consider what is bringing value to this experience? I love the Mary Oliver quote. “What are you going to do with this one beautiful life?” How are you going to live it? You choose. It is a choice. There are things out of your control that you can’t choose, but there are things in your control that you can choose. How can you find that hope and gratitude even in the dark times? It is so much easier said than done. I know.

KSC: You spoke about reclaiming hope and redefining it and really understanding it. You had hope before, but you have hopenow.

LM: I am honored that we can reshape that conversation in the cancer support community. I think there is a huge disservice in cancer conversation around beating cancer, and the language about fighting it, fight hard, and fight like a girl and beat it. There is some kind of assumption that if you die, you did not fight hard enough, or lost a battle with cancer, when every single person I know who has died from cancer was a fighter. It drives me crazy.

After my metastatic diagnosis, I am glad I have a deeper understanding. I combed through our website and every bit of material and I took out every word and I took out every reference to beating cancer and I changed it to facing cancer. We as an organization made a conscious choice about hope becoming deeper and more meaningful. I hope that we are an example to tell the whole picture and not just celebrate survivors, and those that beat cancer, but recognize the whole spectrum of the story and people’s experiences. That is how we started our research fund in response to that deepening perspective knowing that scarves and stories are nice, but they are not going to save anybody’s life. We were going to really share the way people experience cancer and live out this goal of helping and supporting people. Hope comes in many forms. It is in science and research and understanding treatment options and understanding the disease. We have raised $200,000 in the past 2 years for research.

KSC: The depth comes from the stories.

LM: The scarf is the vehicle for the story. We are Hope Scarves. The scarves are beautiful, and we have hundreds and hundreds of scarves hanging in our studio ready to be sent out. That is what people see and cling to, but the scarf is really just a vehicle for the story That is what sets us apart. That is what sets us apart as an organization from other cancer support organizations is our commitment to the story. Actually, this year in particular we are sharpening our focus on story. We are doing a Storython. We are tweaking our website to make stores more prominent and supporting the people we are in contact with to tell their story and also telling our story. Hope Scarves is ready to spread its wings in a big way. We have been growing and growing and growing, and it is time for us to launch. Can we get on Ellen? Can we get on the Today Show? Let’s get this out to more people. So that is what we are aiming for next. We will see.

Read more about Lara here.