When were you diagnosed and what was your diagnosis? Could you share your first thoughts and steps when you received the diagnosis?
I was diagnosed at 36 years old with Ductal Carcinoma in Situ, (Stage 0) which later learned was a more invasive cancer called, HER2 Pos. My first thoughts were (before the mastectomy) “this seems do-able… I’m young. I’ll probably need a lumpectomy and then go about my life.”
When I was told that the course of action was the mastectomy I was truly shocked. I tried to convince my doctors to let me postpone it all, get pregnant, nurse the baby then come back and have then have surgery. I really had always imagined I’d have the experience of nursing. The doctors were not in support of that idea, first because apparently one does not magically get pregnant immediately just because they wish it to be so (what???) and the process of pregnancy and nursing being a year plus, they did not think I had the luxury of that much time. In addition, HER2 is hormone reactive and pregnancy could cause the cancer to develop much faster.
My steps to absorb all this news and jargon, knowing that I had big decisions to make was to have a friend or family member with me at all appointments. Trying to record all the information while simultaneously having an emotional reaction and process does not allow for much retention of information. Friends and family were a needed blessing in taking notes, clarify what doctors had said and helping me wade through the decision process.
Can you tell us about your course of treatment and the most helpful resources you found throughout the experience?
This was a very hard time for me. I was in the process of accepting the loss of my breasts, and then to learn that I was to lose my hair and about a year of life in treatment sent me spinning. I was angry and felt helpless. I love adventures, before treatment I was always planning and going on adventures, rafting trips, backpacking, hot spring finding, surfing, island exploring. At that time I had been house bound for weeks recovering from surgery and was now looking at about a year of feeling terrible with chemo. Looking back, I acted out. I needed an adventure I could have at home. I found a puppy on craigslist just born in a remote area of Montana. I flew alone to Billings, MT still with surgical drains coming out of my body, rented a car and drove to a ranch to pick up my new adventure and furry addition. I named him Zephyr. He was source of positive energy that forced me out walking at least twice a day every day, even when I felt terrible.
What message do you have for others who have been diagnosed with breast cancer? Any outlets or support systems you would recommend?
Before undergoing both the mastectomy and chemotherapy I opted to preserve my fertility and underwent an egg retrieval process and surgery. If you have not had children or think you want more, I strongly encourage looking into fertility preservation before cancer treatment. It has given me a sense of peace of mind.
I relied heavily on friends and family along with the larger organizations. In Santa Barbara we are lucky enough to have the Breast Cancer Resource Center who helped me with everything from support groups to finding free wigs.
As I was considered a “young adult cancer survivor” I fit a unique category and researched deeply into resources and services. I found organizations like CancerCon, First Descents, Epic Experience and Project Koru and Send It Foundation all gave me the sense of adventure and young adult community I craved. In addition I took advantage of the broader breast cancer organization like, Foundation for living Beauty, Image reborn and Send Me on Vacation that helped me connect with other breast cancer survivors.
I would not wish cancer and cancer treatment on anyone but as a result of it I’ve had some incredible experiences including, being in a fashion show, white water kayaking, attending a conference for exclusively young adult survivors, yoga retreats, ski retreats, spa weekends, and a trip to NYC to attend the Cancer and Careers conference. All of these resources helped me to feel less alone in all that I was going though. I have begun presenting these resources in workshops to other survivors as a way to help other through.
A patient or survivor needs this to makes sense and process this life changing process.
Kari, thank you again for your candidness and willingness to share your experience with us. Our hope is that your words will find their way to someone who needs them. We are so grateful.