Meet Heather Hall: 3-Time Cancer Survivor & Health Advocate

How did your cancer journey begin?

I was 21 years old, three months shy of graduating from college, and was incredibly active at the time. I started having some pain in my left knee, but kind of blew it off. When you’re 21, what can happen to you?

Eventually, I went to a walk-in clinic. They took an X-ray and saw an unusual spot in my distal femur area. Within a week, I received an osteosarcoma diagnosis and had a port inserted in my chest to prevent chemo from ‘blowing my veins.’  Over the next 13 months, I was in and out of the hospital for over 20 chemo infusions and underwent an 8-hour surgery to remove and replace the majority of my femur and tibia. I learned to walk again. 

Then, a few years after the treatment ended, I went to the dermatologist for a regular checkup and discovered I had melanoma in situ. I’m so thankful we caught it early. I’d pointed the same mole out to my doctor before, and he said, “No, it looks fine. You have a lot of freckles, and you have a lot of moles. You’re a redhead with pale skin; this is normal.” When I returned a month later and told him to remove the mole, that’s when they found out that I had melanoma. It was contained, thankfully. This was my first real instance of the importance of being my own advocate.

Seven years ago, I went in for an annual mammogram screening. A shadow on the mammogram turned out to be early-stage breast cancer. I underwent a lumpectomy, chemotherapy, radiation, and have been in surgical menopause with an estrogen inhibitor for the last seven years. It’s a loaded question when people ask me, “Can you tell your cancer story?” I usually reply, “Well, I hope you have a few minutes.” 

Where are you on your journey now? 

I’m almost seven years out of treatment now and still navigating that post-treatment journey. Any cancer survivor who is reading this right now is going to understand when I say that the cancer journey doesn’t really end for us. We are just learning how to navigate what this new chapter or new normal looks like. I have navigated a new normal multiple times; and I’m learning to navigate after breast cancer. When people think of breast cancer, they think that it’s only related to your breasts. What so many people don’t realize is that every part of a woman’s body is impacted by breast cancer. When you’re going into early menopause, every part of your body is impacted by that, not to mention your mental, physical, and emotional health. I’m trying to navigate that journey and see what it looks like for me day by day.

Mental Health and Cancer: Let’s Talk About It

Mental health has been a really important thing for me. When I was diagnosed at 21 over 20 years ago, there weren’t a lot of resources for young adults. In fact, there was a very significant gap in care. Over time with many people advocating, the gap is slowly shrinking. But it’s still there in some ways for young adults. 

Being diagnosed with cancer at the age of 21 changed the whole trajectory of my life. I thankfully graduated college in between chemo treatments, albeit on crutches and wearing a wig! I couldn’t get a job for a while because I was still in treatment and then recovery. Having cancer impacted my finances, my career, and my relationships. It took away my ability to have children. All of that impacts your mental health. When I was finishing treatment for bone cancer, my dad was diagnosed with cancer. He, unfortunately, was diagnosed with late-stage multiple myeloma. He outlived his original prognosis thanks to research and new treatment options, but still died six years after diagnosis. That, of course, compounded my mental health and survivor’s guilt. My dad was my hero and he still is 20 years later. He’s a guiding light for me in all of the advocacy work that I do.

I went through all that as a young adult cancer survivor (including surgery for melanoma in situ). Then as an adult, breast cancer completely threw me off and came out of the blue for me. Even though I’d been diagnosed before, I just felt like I was in the best health of my life. Then, I received that diagnosis. I have to admit that one kind of shattered me. I spent a long week after hearing those words again, lying in bed, just thinking to myself, “What is happening right now? How am I going to get out of this?”

I had to make a decision. When I was 21, I came up with a mantra for myself. I really believe that we all have the power of choice. It can be overwhelming to feel like we cannot always control what happens in our lives, good or bad. But the reality is that this is life. We’re going to face challenges and obstacles. We’re going to face some heavier problems than others. While we can’t always control it, we can choose how to react or respond. “What are you going to choose today?” That message has become a life model for me.

During breast cancer, I was struggling to get out of bed. One day, I heard the birds chirping while I was lying there, and the sun was out. I thought, “Woman, you have worked so hard to live for so many years.” I realized that I truly love living. After every single thing I’ve been through, I love living. So I would ask myself, “What are we going to choose today?” In the morning, while I brush my teeth, I look in the mirror and say, “Today I choose…” That’s how I manage my mindset; I focus on what I am choosing each day.

What is some of the advocacy work that you do?

I work with legislators at the state and federal levels. I live in Michigan, and I’ve been to Lansing and Washington, D.C. many times to work with our representatives and their staff. I work with nonprofit advocacy organizations to push forward cancer and general healthcare issues. We want to make sure that we have access to care, and I can very confidently say that I’m alive thanks to research. Research is what saved my leg and discovered breast cancer earlier. It has helped so many of my friends and family. My younger sister is a melanoma survivor. My niece is a breast cancer survivor. It’s impacted my family, friends and strangers I meet all the time. 

On the advocacy side, I think there’s so much positive impact we can make by using our voices and sharing our stories. Every single person’s story matters. There is not a story that’s too small or too big. It really matters to show the personal side of legislative decisions. You don’t have to go to DC or your state capital to make a difference. You can send an email. You can share credible, trusted sources with people. You can make others aware of what’s happening, of the new policies, or access to affordable care and preventative treatments. All of those things can really save lives.

Right now, our research funding is on the chopping block, as well as affordability and so much more impacting our lives. It’s even more important to use your voice and let our policymakers know that they cannot halt research funding or limit access to care. We will fall backwards, and people will die. That’s just the reality of it. I think about my dad a lot. As I mentioned, he was diagnosed with late-stage multiple myeloma. There’s no cure for multiple myeloma, but I’ve met so many myeloma survivors over the years who have been alive for 10-20 years post-diagnosis. Research has done that. Six years was not enough time with my dad, but he was originally given three months. Thanks to research, we were given six years. I want someone else to have more than six years with their family, and more research is the only way to get there.

Every person has the potential to do something, no matter what it might look like. Send that email, share your cancer story, tell somebody you know that you care. One person can start that positive change, and it’s a ripple effect that impacts your family, neighbors, friends, communities, and beyond.

I also work in advocacy in general. Teaching people to be their own advocate is a passion of mine. I host a blog and website sharing real-life stories and resources about living beyond cancer and how people can take care of their mental health and health in general. I coach cancer survivors in and out of treatment to be their own advocate, created affirmation products to help with mindset, and lead workshops and speak about mindset, advocacy and more. 

Do you have advice for anyone who’s recently been diagnosed with cancer or facing a secondary diagnosis?

I think one piece of advice that I would have is that you are your own advocate. You matter the most to you. We need to be our own advocates in multiple areas of our lives. In terms of healthcare, use your voice. Use your voice when you meet with doctors. Ask questions. Be confident in your decision-making. Your health is your life. 

I walk into every doctor’s appointment with a bright orange notebook. It has questions and concerns that I want to discuss, and also where I’ll take notes so I can reflect after the appointment. I recently saw my breast surgeon for a checkup, and she asked “Where’s your orange notebook?” She knows I’m going to ask questions every time. I trust my doctors and still ask questions about every single aspect of my treatment. For example, when an estrogen inhibitor was recommended as part of breast cancer treatment, I asked my oncologist, “Why? What’s it going to do? What are potential side effects and risks to my overall health? How do I work to prevent or manage those effects?” I think that we don’t ask enough questions during our cancer journeys because we are overwhelmed. This can be the case both during active treatment and after treatment. After treatment, those questions can look like asking, “Well, what’s my long-term plan? What are the side effects? How can I ease those side effects? What are some prevention strategies?”

Being your own advocate also means speaking up around your family and friends. Learn to say “No, thank you” or “I really need support.” I’m someone who really struggles to ask for support, even though I will give support to a stranger. Someone could come to me on the street, and I would ask them what they need. Now, I’ve discovered that I need to ask for help when I need it.

How did having cancer shift your relationships with friends and family? 

Having cancer definitely shifted relationships. Being diagnosed so young affected my entire adult life. Dating, relationships, career, finance, motherhood/infertility. 

When I was diagnosed in 1997, fertility assistance and preservation were not regular care topics. I didn’t do anything to preserve fertility, like freezing my eggs. Now, I’m aware that numerous factors can impact fertility. While the topic of infertility is more prevalent today, there are still too many people who don’t understand or know the options of fertility preservation before treatment. It’s one of my passion projects to help raise awareness so other cancer survivors can at least have the option of considering a family after treatment. 

As a young adult cancer survivor, I felt different than my friends. I felt older. People worried about things so different from what I was worried about, and I had to refrain from judging them. I always reminded myself, “That is a big deal to them, even though that is not a big deal to me because I’ve been through worse.” That’s kind of my mantra when I have to do scary things in life. I’m a public speaker, so before getting on stage, if I start getting nervous, I tell myself “Girl, you’ve been through cancer! This is not a big deal.” It almost instantly soothes me. 

I found that many people show up for you during treatment, and then after treatment, you tend to not get as much support. People think ‘oh, cancer treatment is over, life is normal and fine.’ Most don’t realize that your cancer journey simply changes.  Thankfully, I have created some authentic relationships with a community of women. I can reach out to them during a tough time to receive support. The older I get, the more I’ve been through, the more open communication becomes a staple of my current friendships. 

In regard to my relationship with my dad, he was an amazing person. I have two sisters, and he was our biggest champion. My parents were madly in love with each other too. They were beautiful examples of love. When he was diagnosed, it was devastating. I think his diagnosis was harder on me than my own bone cancer diagnosis, as weird as that sounds. Here’s a hero who was misdiagnosed because he was told, “Don’t worry about it. You’re just tired because your daughter is going through treatment.” That was hard to get over. Then, as I got healthier and stronger and stayed cancer-free, he kept relapsing. My logical brain knew that, of course, he wanted his child to be healthy, but when he died, it was devastating and heartbreaking. I know so many people who have been through the grief of losing a loved one to cancer or something else tragic. When you know somebody like my dad, he loved life. He loved being there with my mom, and they had so many plans for their future. He was 56 when he died, so very young, and that was difficult to see.

I do recall in the months leading up to his death, he knew what was going to happen. He had slowly come to terms with it. We had a lot of conversations, just the two of us. He used to say to me “Do not let my death be something that drags you down. You are your own person. You are your own cancer survivor, so just make the most of it. Don’t ever stop smiling, because your smile is going to be a person’s smile that changes the world. So keep smiling and keep going. If you want to use my story and advocacy to help others, there is no better storyteller to do it than you.” I’ve always kept those thoughts in mind. I cherish those conversations. 

Much of what I’ve done in terms of advocacy and in my life are in honor of my dad. He was a really good person who totally wanted to make a difference in the world. He would be in downtown Detroit, see a homeless person, pull into a restaurant, get a bag of food, and give it to that person. Those are the people we need in the world.

What do you want others to know about life beyond cancer?

Leaving the treatment center to see the “life beyond” is a lot. The stereotypes of immediately  bouncing back after cancer are harsh and impossible to live up to. Obviously, you won’t.

For those facing cancer, I have another mantra to offer. I’ve always lived as if I’m living life beyond cancer, regardless of whether I’m in treatment or not. Live like you don’t have cancer. Live like today is a regular day. What would you do if you didn’t have cancer? Even on the days I had treatment, I would still think like that. What would I do if I didn’t have cancer? I would still smile at this stranger, pick up this book and read it, or make plans to go to the Detroit Red Wings game. It helped keep me from getting stuck in the heaviness of cancer. 

I talk about mindset, and I’m a naturally optimistic and positive person. But I certainly have heavy feelings. I have sat and cried on the bathroom floor, and have been angry and frustrated. As humans, we can live in duality of emotions. I feel like we need those emotions to be able to appreciate the happy emotions. When we do get the good news, we can focus on that. The trick is not to get stuck in those heavier emotions so we can’t move forward. 

Making the choice to live beyond cancer allows us to keep cancer from running our lives. There are many things we might be forced to do because of cancer. But it was empowering to find all the things that cancer couldn’t take away from me. For example, cancer couldn’t take away from me laughing with my nieces and nephew. It couldn’t take away from me going out on a walk, spending time with friends, reading a juicy book. 

Cancer impacts every part of your life. Even when you’re done with treatment, the impact of cancer doesn’t stop, it’s just different. We celebrate the end of treatment for those who are able to see it. I know lots of people who have to continue treatment for the rest of their lives. 

For all of us in the cancer community, please be patient with and supportive of us. Don’t tell us to get over it when you’re done with treatment. Don’t act like everything goes back to normal after cancer, because there’s no “before cancer” normal again. It’s all a new normal that we are navigating. It takes time, patience, emotion, and support. I don’t think we even give these considerations and patience to ourselves sometimes. We don’t want to put our lives on hold anymore. 

I saw a therapist when I was diagnosed with breast cancer, and told her how I was irritated at having to put my life on hold again. Her response was, ‘Well, what are you putting on hold?” At first, I thought “Well, I have to do chemo and radiation.” She responded, “No, I hear you on that. And that’s super annoying, I’m not discounting that. But what are you putting on hold right now?” At first, I was confused by her question, but I started listing things, like postponing a trip. She said, “Ok. When are you going to reschedule it?” I responded, “Well, I’m going in the fall instead.” Then I realized what she was actually asking. 

What are ways that I could still push forward with my life? I could still work on my blog. I could still do advocacy work. I needed the distraction. I had to learn to be patient and give myself things to look forward to instead of focusing on the anger of these new things I had to do for cancer treatment.

Closing Thoughts

There are not enough survivorship plans or conversations about navigating life after cancer. Most of this work is being done by nonprofits and other organizations. I’m huge on trying to show support, but the healthcare industry needs to step up. Physicians need to have the training and resources to provide their patients with an outlined survivorship care plan after treatment.

We also have to be proactive about our health. It’s our life! For instance, one of the resources I share on my website is a handout about important things to do after you finish treatment. One of those items is being proactive by asking, “What are the drugs and treatment I was given? What was the dosage? How would I describe the radiation?” You will likely be going to other specialists for a long time after cancer, and it’s easier when you are able to provide them with a list of prior medications you’ve been given. If your doctor doesn’t give it to you, ask for it. 

A doctor once said to me that everybody is one medical diagnosis away from potential bankruptcy. It doesn’t even have to be a cancer diagnosis, literally anything. Even healthy people need to pay attention to this.

The important takeaway is that we all have the power of choice - choosing to use our voice for positive change, choosing to stand up for our health, choosing to help others. Hard things shouldn’t have to happen to you for it to matter. So my question to others is “what will you choose today?”

Photo courtesy of author.