Finding support in each other’s stories: Lesley Nygaard
One of the best things I did after being diagnosed with breast cancer was look to mentors and women who were ahead of me in their cancer journey. I think one of the scariest parts of learning you have breast cancer is the fear of the unknown, and I really enjoy the opportunity to chat with newly diagnosed women because I remember how stressful and scary the waiting and not knowing was.
While everyone is different, and everyone’s reaction to treatments can vary and people even have different thresholds of pain, I distinctly remember the stories women shared of their side effects and experiences that made it less scary and anxiety producing. One example that immediately comes to mind is when I got mouth sores from a round of chemo. It was excruciatingly painful, but someone else had that experience so I did not get alarmed. I knew I could get a prescription mouth rinse that would help manage it.
I think I have always been a glass half full person. In some ways an advanced cancer diagnosis is a gift. I never thought I was invincible, but I never thought I would be looking death squarely in the eye at 41. I did NOT have a family history, so the advanced diagnosis at a young age was a shocker. Luckily, I had a great medical team and a tumor board thought I should have the BRCA test. In 2009 this was new, expensive, and not widely accepted. I was lucky, I had terrific insurance and I had the test, which back then was close to $3,000 but now can be done for under $500. I was positive. This insight by my amazing medical team likely saved two of my sisters a potentially life-threatening cancer diagnosis, they were positive too and went forward with the prophylactic double mastectomy and oophorectomy.
When you have an advanced diagnosis, you start to look at your mortality in a more concrete way. Unlike a sudden death, you have time to get your affairs in order and say what you want to the people you love. I realized how bad our world is at handling death and dying. I wanted to talk about the fact that I may die while my loved ones were not at all comfortable with the conversations.
When they say a cancer diagnosis puts in perspective what is REALLY important, it does. The saying about sweating the small stuff really sinks in. It has given me the opportunity to really be present in the moment. To drink out of my good crystal glasses and light candles. Stop saving things for special occasions that may never come — every day is a special occasion.
On the other side is the lingering fear of recurrence. I have never been one to worry about small aches and pains before cancer. Now if I get a two-day headache, my mind jumps to brain mets, or a lingering joint pain leads to fear of bone mets or a lasting cough lung mets. That happened often in the first few years and less often recently, even though I had a very big scare in 2017.
Robin Roberts was one of the public figures going through breast cancer in 2007 about 2 years before my diagnosis. I was a loyal “Good Morning America” viewer, and she chronicled her experience in front of the entire world. She was one of those mentors to me although she would never know that. She handled her diagnosis with such dignity, class, and grace, and I knew that was how I wanted to handle my experience. Her personal battle cry, “Make your mess your message,” really resonated with me.
One of the things I realized after my treatment was complete was that there was very little support of any kind after. Yes, my healthcare team had provided me treatments that saved my life, but now what? I had collateral damage to my physical self that no one really told me how to address. I went back to school to learn about nutrition and natural things I could do to regain my health and energy. Chemo and radiation left me depleted and I knew there had to be a way to regain my vitality. That is what led my partner and myself to form Ultimate Vitality. I wanted others who had experienced what I experienced not to have to go through the trials and errors to find products and lifestyle choices that could help me feel more like my pre-cancer self.
This year I will celebrate 12 years cancer free in August. I strive to celebrate every anniversary. In the world of cancer, the 5-year mark is a critical mark, and I went to Everest Base Camp. A hip replacement and COVID-19 interrupted my 10-year celebration plan to circumnavigate Mont Blanc, but I will start training for that and when those countries reopen to tourism I will go.
I have recently become aware that women diagnosed young look up to me. I have become a beacon of hope. I really enjoy helping relieve concerns and giving young, newly-diagnosed cancer “thrivers” hope. I really embrace the concept of not just surviving but thriving. I do not want to have just survived my diagnosis, but I want to thrive and live a life less ordinary. I want to matter.
I also remain very present and grateful and live with conscious intent every day, not just for myself, but for the many amazing women whose lives I have connected with who are no longer with us. I thrive for all of us.
Lesley Nygaard was diagnosed with stage III, hormone receptor-positive breast cancer in March 2009. She and her partner, Mark Brown, are the founders of Ultimate Vitality which sells gift boxes, a top-selling radiation relief cream, and health and wellness products geared primarily to people who are going through cancer or who have completed their treatments.