I’m 36 years old, and I’m worried I have breast cancer. I can’t explain why. I don’t exactly feel a lump. I go to the doctor and have my first mammogram. It’s negative. I get a second opinion. More tests. All negative.
Fast forward two years. The breast surgeon comes in with tears in her eyes and says, “You were right. You have breast cancer.” I begin to panic. Breast cancer with a two-year delay in my diagnosis! This is unbelievable.
Before my 39th birthday, I go from being a young, vibrant woman to a shell of my former self. All of my roles – as a mother, wife, daughter, sister, friend and doctor – take a backseat to the toxic treatments I have to endure to try and survive.
After many months, my oncologist says, “You are finished.” He is an excellent doctor – one I deeply trust. I ask him, “What do I do now?” He tells me to go home and heal and then go back to work.
At home, I’m weary. I have pain. I am almost too tired to figure out how to heal myself. But, I’m a physiatrist – a doctor trained in rehabilitation medicine. Our mantra is “focus on function.” I can heal myself and begin to function again if I make a plan and work at it. I have no other option.
As with so many cancer survivors who look death in the eye and stare it down – at least for a spell – I want to reach my hand out to others who are newly diagnosed. They are scared, like I was, and need help dealing with toxic treatments that leave them feeling decades older than their actual age. I pay it forward and write a book for survivors called After Cancer Treatment: Heal Faster, Better, Stronger.
I begin to lecture all over the country to doctors and other health-care providers about the need for cancer rehab. It’s missing from the treatment plan, and it needs to be offered to patients, I tell them. No one disagrees. But, identifying the need isn’t enough. “How do we do it?” they ask. I spend many hours explaining how it’s just like stroke rehab and other forms of rehabilitation after a serious injury or illness. I tell them about how research has proven that rehabilitation helps people to function better and have less pain and fatigue, how health insurance companies pay for this care, and how desperately survivors need and want it. But, there are too many questions for me to answer and too many people asking them.
I realize that I need to create a program – a methodology that hospitals and cancer centers can use to implement a best-practices model for cancer rehab. Something that they can implement that will help cancer survivors who are suffering now. I team up with some colleagues and create the STAR (Survivorship Training and Rehabilitation) Program. Hospitals and cancer centers throughout the United States begin to adopt this.
A woman writes to me who was searching the Internet. She found a STAR Program at Jupiter Medical Center – just six miles from her Florida home. She’d been suffering for years. She’s so grateful and includes me in her prayers. I thank her for this, but I know that there are many others still suffering far more than they need to. They don’t have ready access to excellent cancer rehabilitation services.
I have an idea – it’s kind of crazy, but it just might work. What if an entire state commits to making the STAR Program available to every survivor? It started as a real long shot, but with the help of dozens of doctors and other health-care professionals in Rhode Island, support from the Gloria Gemma Breast Cancer Resource Foundation, and assistance from government officials, beginning in 2012, every survivor in Rhode Island will have access to a facility that has implemented the STAR Program – there are nearly 20 sites and more signing on.
This October, on a hot and humid day, I stood with a large group of people who helped make Rhode Island the first state in the United States to offer every survivor the opportunity to heal as well as possible from toxic cancer treatments. For the official “launch” photo that was featured on the cover of ADVANCE for Physical Therapy and Rehab Medicine, on my right, sweating with the rest of us, was Rhode Island’s governor, Lincoln Chafee.
It’s been more than eight years since I was diagnosed with breast cancer. There’s still much more work to be done, but I am so proud of the “little state that could.” I hope that other states will follow Rhode Island’s lead in caring for their survivors. I hope that the health-care community stops telling cancer survivors to “accept a new normal” before they’ve been offered cancer rehabilitation. And most of all, I hope that survivors have the opportunity to function as well as possible every single day of their lives.