What to Do When Things Go Better Than Expected: Finding My New Normal with “NED” Ten Years Later

Ten years ago upon receiving my diagnosis of breast cancer, I was frightened and confused. However, I also remember feeling relieved, which was really weird. I was no longer waiting around for the generational curse of my family’s cancer to creep up on me. As any person who shares their body with cancer knows, the feelings around it can surprise you. 

When I was first diagnosed, I chose to relax and put my faith in the doctor at the time. After all, my oncologist had prefaced my treatment, “No worries. We’ve got this.” Initially, my aggressive treatment worked. After a chemo, radiation, and a double mastectomy that was one medical mishap after another, I was cancer free. As a lifelong learner, I attended as many conferences as I could find. I learned about how cancer isn’t just a disease in the body, but a shift that affects every area of one’s life. But about two years later in 2015, everything came back much worse. I was given three months to live. That wasn’t going to work for me. The regular “Plan A” hadn’t worked for me. Time for me to make a “Plan B.”

Given how extensive my cancer had spread—including a pancake sized tumor inside my skull—I realized that this wasn’t a “fight” I could win. I couldn’t just have surgery to take the cancer out of my bones and blood. I needed to learn how to live with it.

My approach going forward was a giant shift in perspective. I started dancing with cancer, taking steps back and forth:

• Say goodbye to ego. There was no space for my ego in this dance.
• Get rid of stress. When I faced my own mortality, I stopped sweating the small stuff. A lot of the worries we busy ourselves with really don’t matter.
• Let go of control. I had to surrender the illusion of control I had. There’s no amount of strong-arming that could will the cancer out of my body. I pursued new ideas, and didn’t get put down by all the things that didn’t work.
• Find your community. The cancer community was a safe haven for me with like-minded people. People without the disease tend to be touchy around the concepts of death and disease. The cancer community is a space for frankness, joy, and sharing good ideas. No space for tip-toeing. 
• Relax. I had to blast my panic with a fire hose of relaxation. I made myself turn that hose on all the time.
• Research. I researched. I researched more. There’s a huge amount of resources on every topic you can think of. I tried treatments that haven’t been approved for use in the United States, including hyperthermia in Austria. I ate up every piece of knowledge I could so I could approach my cancer more knowledgeably than my first go around.
• GIANT MIND SHIFT. Understand that fighting is not the way to go. I needed to find a different understanding of how to deal with this, and this was to dance with the cancer. That took a lot away from the exhaustion of fighting. I was still exhausted, but I did not feel like I was losing. I felt my job was to dance with it. 
• Start enjoying this journey. I know that sounds crazy, but looking at things with curiosity took away some stress.
• Appreciate. I appreciated the people around me, and the cancer communities like the retreat in Commonweal. I was grateful for the people I was meeting on this road. I truly enjoy them.
• I went to Vienna for treatment. I enjoyed the city. I enjoyed the doctor’s thoughts. I worked with the doctor and earned his respect, as well as respecting him. 
• Keep learning who you are. I kept learning who I authentically was, because I didn’t know before. The more mindful use of my time helped me see what I really valued, and who I really was.
• Again, relax. Relax. Relax. I chanted to myself to calm down. I blasted my panic with that fire hose over and over.
• When I was healing and started to let go of the small stressors, I realized that there’s no such thing as being lazy. There’s no use judging yourself. When my body said I was tired, I put my body’s needs first. That’s not laziness—that is self care.
• Confront fear. Although we all know death is inevitable, many prefer to not confront the reality of it in our lives. One of the most liberating experiences I had was at Commonweal with Michael Lerner. We talked about what our own death could look like, and how to make that the best experience it could be for ourselves. What music did we want? Who did we want present? Imagining this scenario gave me some power and helped me confront fears that many keep stifled below the surface.
• Contribute. I started cancer coaching. I had years of experience in this game that many others didn’t. I had research to share and personal anecdotes that many found helpful.
• Keep laughing!
• Contribute some more. The cancer community is always in need of support. I gave speeches at conferences, and thought about opening my own retreat. I settled on writing a book instead, respecting my body’s need for rest that might be incompatible with such a business venture.
• Explore integrative cancer care. All of the conferences and experiences taught me that cancer is not just a disease like high blood pressure. You can’t take a pill and try not to think about it. It comes at your life in every way. Approaching cancer from these other ways of impact helped heal the some not “clinical” facets of my life. There are complementary ways to support your body, like massage. And there are alternative treatments you can bring to your doctor to advocate for yourself, such as fractionated chemotherapy. 
• DO NOT BE FREAKING OUT. THERE IS NO POINT.
• Be as kind as I possibly could be. Never ever judge myself.

I’ve followed these ideas for the past nine years. Now, another unexpected set of feelings is coming up. Last month, I went to one of my regular three-month checkups that I have with my oncologist. She told me I was NED (No Evidence of Disease). My first reaction was denial. Nope. That’s not possible. I’ve had metastatic breast cancer along with chronic myeloid leukemia for the past ten years. I’ve been through numerous treatments. Too many to count. There’s no way that I could be NED! Me? A woman with metastatic breast cancer in her organs, blood, many bones, and inside her skull? Who’s been to the hospital every month for scans, injections, and blood work? It really didn’t make any sense.

I’ve spent a lot of these past ten years on cancer. Diagnosis. Remission. Recurrence. Lethal prognosis. A resolve to search the globe for every kind of treatment that might work. Thousands of dollars and hundreds of hospital visits. Thoughts every day about how I must write my calendar in pencil, not pen. Coexisting and cancer coaching. Surfing the waves of complications and side effects.

But now? It feels like another page is turning. It feels too momentous for me to take in clearly. I’m so used to looking at the numbers on my blood work and feeling my body to see if there’s something that I should be worried about. In all honesty, cancer is part of my persona in some ways. I’m a cancer coach. I belong to a lot of organizations that I contribute to. 

In fact, in some small way, I wonder if my value to the cancer world has changed. Instead of being the woman that survived for ten years with lots of cancer everywhere, I’m now the woman who had cancer that was able to be done. Gone away. Does that hurt my credibility as a cancer coach? As a thriver? As a motivational speaker? Because I got rid of it? I don’t know. But it’s something that crosses my mind.

Who am I without cancer? So much of my life and identity is tied to hospital stays and how I help the cancer community. I live my life grateful for today and unsure of tomorrow. Who am I, now that I can dream of meeting my grandchildren?

So, for the moment, I tentatively believe my oncologist. And I’m trying to decide where this news fits in with my world.

Find Lindsay’s dance with cancer at:

• Your Dance with Cancer: Steps to Maximize Your Chance of Survival, a book available on Amazon
• yourdancewithcancer.com
• Your Dance with Cancer Facebook Page