My Story. I’ve been through 7 cancer-related recoveries and learned that going through treatments is hard, but recovering is often harder. After treatments I was still sick, suddenly alone, and had no resources for how to heal as doctor’s appointments wound down and friends and family went back to their busy lives.
Lisa Lefebvre, Founder/Patient
Your Story. Like many, I’ve also been a friend, family member and colleague of cancer patients. I felt helpless watching other people suffer and either sent flowers (which didn’t feel helpful) or simply didn’t know what to do.
Everyone’s Story. There are 14.5 million cancer survivors in the U.S. Over 40% of Americans will get cancer in their lives and 93% of us know someone diagnosed with cancer.
My name is Lisa Lefebvre and I’ve had cancer on and off during the last 15 years.
My cancer experiences have been harder than some, easier than many. I was raised in Minnesota – a kind, stoic Scandinavian/Germanic culture where we tend not to talk about feelings – we just hunker down and bear things. If I were to be honest, I would say that the “inner” account – or dialogue – of my cancer recoveries has been very emotional and volatile. I struggled so much, so often. So I am sharing some of my story here, in the hopes that you will join me on a journey to learn how to be there for someone diagnosed with cancer (even if that someone is yourself) and help them find their way during recovery.
I was first diagnosed with breast cancer at age 38. Both breasts had tumors and the cancer had spread to my lymph nodes, so I underwent a bi-lateral lumpectomy, chemotherapy and radiation.
My chemo side effects were significant. This taught me the very real difference between pain and suffering. I went from being in the best physical shape of my life to finding it difficult to walk more than 1 block or exit the subway without resting. Like most people, I lost my hair. The treatments also sent me into chemical menopause. Regardless of the temperature, I could never get warm and I was quite sad to have my sexual chemistry changed so abruptly at a young age.
During this time, I was treated by a functional medicine MD. He prescribed a range of nutritional supplements that were instrumental in helping me regain my stamina and manage my nausea.
Shortly after, I learned I had a BRCA1 genetic mutation which carries high risk of additional cancers (85%). And each prior tumor also carried a 15% chance of metastasizing (e.g. becoming terminal). I was glad to be aware of my increased risks, so I could be proactive, but my worry became all-consuming: I wasn’t at the end of my cancer journey, I was at the beginning. I spent many nights building spreadsheets to predict when I might die. My statistical skills aren’t that advanced, so I finally gave up, ball-parked that I probably would die on the early side, and prepared to just live fully for today.
Two years later, an ultrasound revealed multiple growths on both ovaries. I had preventative surgery to remove the ovaries and I went into surgical menopause. Going from chemical to surgical menopause was a cliff drop. It was bewildering — physically, emotionally and socially — to be walking around with no estrogen in my body.
Because of my high risk for new breast tumors, my oncologist strongly recommended a mastectomy. I dreaded this so he reluctantly gave me a 5-year deadline. Six months before the deadline was up, they found cancer again and it had spread into my lymph nodes once more. I had a double mastectomy and a different chemo protocol that caused significant weight gain. I was disheartened to be tasked with losing 30 pounds after a major surgery. It was a true slog.
Over the next 6 months, my pectoral muscles were gradually separated from my rib cage to make room for implants. I was enrolled in an implant clinical trial (which failed). This was quite a painful process. My chest muscles wouldn’t stretch enough to accommodate the experimental prostheses. I developed PTSD and a phobia of being touched due so many needles and the open-ended nature of the implant pain. I was ultimately prescribed 4 levels of pain medication so I could focus enough to hold a conversation with others.
I struggled to find less toxic solutions to managing the pain — and my PTSD. During my years of searching, I found multiple products (specific bras, mattress toppers, seatbelt covers) and specialized services (EMDR, myofascial release) that significantly improved my daily life.
Two years ago, I passed some chronological hurdles and my survival rates improved greatly. This was truly disorienting and required a major emotional course correction. I was angry that what I thought was a prudent call — getting ready to die and living for now – resulted in me not being as financially prepared as I would like for retirement. An immersive arts workshop was instrumental in helping me reorient.
Currently I am in the last years of a 10-year hormone suppression protocol that was required because one of my tumors fed on estrogen. With literally zero estrogen in my body, I felt I learned how it might feel to be biologically between genders. It’s a bizarre but interesting experience. Of all my treatments, hormone therapy has been the most trying. I deeply miss feeling like the woman I used to be.
I have one elective surgery in front of me to remove my failed textured implants, which have now been shown to generate an additional risk of cancer. I will be glad to remove this long-term source of chronic pain, but I am not looking forward to another recovery. But Mend is a wonderful resource to turn to during that period.
In the meantime, I’m focused on introducing newly diagnosed patients and longer-term survivors to the resources on Mend. It’s obvious that we need to show up for people during their cancer treatments. It’s not as obvious that the very hard work of recovery – often the most challenging phase of cancer – happens after surgeries and after treatments end.
There are many ways to show up for someone who needs you. I’d love to help you help someone you care about. Learn what to say/not say, get advice on how to manage common symptoms, be an advocate for a loved one and create a Recovery Registry or simply buy something here that will help us keep the lights on and make a difference.
My hope is that we can eventually expand Mend to help survivors of other traumatic events that need “Mending After” such as cardiac problems, domestic violence and even natural disasters like hurricanes. For the time being, 10% of proceeds from purchases on this site go to people who can’t afford cancer recovery care.
Thanks for reading this and thank you for your support.