Joe Dangor (@joedangor) published a blog post · October 27th, 2011
My Mayo Story
By Annemieke van der Werff
At the end of March 2010, my husband and I returned from a wonderful trip through India. During the trip I had noticed a swollen lymph node in my left armpit. At first I didn't make much of it, but as it persisted I went to see my doctor in my hometown of Chicago immediately upon my return. The antibiotics prescribed didn't do the trick so I had a mammogram.
The expression on the face of the radiologist said more than words can say but, at that point in time, she couldn't confirm a diagnosis. Three weeks later, on April 13, 2010, a biopsy confirmed my fear. I had an uncommon and very aggressive form of breast cancer, Triple Negative Breast Cancer (TNBC).
My husband and I discussed the findings and next steps with my doctor and walked home. It was a very long fifteen-minute walk back to our home as we made life choices about how to take this head on. We didn't get much sleep that night.
Based on the information my husband and I found on the internet about TNBC and the time that had already elapsed with the various follow-up doctor visits, we decided to send an email to the Mayo Clinic that evening.
A little after 9 a.m. the very next morning, I received a call from the Mayo Breast Cancer Clinic. Already the information I'd sent had been shared with the medical staff and I was invited to come in ASAP for a second opinion. Just days later, armed with a medical file, scared but ready for the fight, I had my first appointment.
Dr. Loni Neal greeted us with the most sincere, personable attention. She was honest and said, “we can't promise we can save you, but we are going to take good care of you.” These were the most important and much needed words to hear. Within 15 minutes I felt I had arrived at the right place.
Two full days of additional tests followed with more scary hours and nights and, at the end of those 48 hours, I had a plan of action.
During that time, I picked up a CD with stress reduction exercises from the Mayo Clinic Store and started using it on a daily basis. I met with my Oncologist and his Certified Nurse Practitioner to talk through what to expect during the twenty weeks of chemotherapy that was planned for me.
Within 72 hours of my first visit to Mayo, chemo started. I could never have imagined I would feel happy about starting chemotherapy but, in a way, it gave me my life back and allowed me to take charge of my situation.
The medical team on the 10th floor of the Gonda Building is unbelievable, compassionate, professional, and personal, and made my chemo regimen easier. I felt extremely lucky that the chemo produced rapid results and at the end of the twenty weeks, the tumor was no longer visible on the scans.
After a 4-week break, surgery followed; a lumpectomy and axillary dissection. When the surgeon gave me my final results of the surgery and the pathology report (a complete pathological response), I knew I was done with step two. However, many more steps were to follow.
The Lymphedema/Rehabilitation Center helped me with exercises to get back into shape after surgery. When I was sufficiently recovered from surgery, Radiation Oncology carefully explained why I needed radiation, a treatment I greatly feared. I ended up having a total of thirty rounds of radiation. The daily, three-minute treatments were made much easier by the radiology staff who were always there with me. I followed the radiation oncologist’s advice to pamper my skin diligently and, despite the intensive treatment, I had no severe reaction at all.
Dr. Neal did something else for me. At an early stage in the process she connected me with a psychologist to talk through the mental challenges I would face during treatment. The psychologist quickly introduced me to the practice of “Mindfulness Meditation” and I enrolled in an eight-week course at the University of Minnesota. Additionally, out of the blue, I was contacted by a mentor, now a friend, who had gone through a breast cancer experience before me. I was also connected with someone in the Integrative Medicine department who gave me guidance about diet, supplements, etc. He was supportive of my wellness choices and helped me recognize that, in addition to all the great medical support I was receiving, there are four pillars I needed to stay focused on through the journey: 1. manage stress, 2. exercise on a regular basis, 3. maintain good nutrition, and 4. have a strong support system of family, friends, etc. The one pillar I knew I needed to improve on was how to manage the stress and fear in my life. This all coincided well with the kick-off of the University of Minnesota Mindfulness Based Stress Reduction (MBSR) course.
This is a long intro to share why I believe I am where I am today. I feel happy, healthy, and strong, and I still look at life with the same positive view as before my diagnosis. However, now I know it takes good choices and hard work to continue to be happy and healthy.
At the onset of my journey, I experienced two life-changing periods of time where I made some important life choices:
1. One was during my first visit to Dr. Loni Neal’s office. It was made very clear to me that it wasn't just one doctor taking me by the arm; it was a whole team of medical professionals. Most importantly, I never felt like an outsider of the team. On the contrary, I felt I was expected to join in from day one, as was my husband. In order to be prepared for what was to come, we were encouraged to ask questions, share insights, and educate ourselves regarding cancer, TNBC, nutrition, and psychological factors.
2. The other was during that walk home after receiving my diagnosis. I decided to fight the fight, lose weight and exercise.
Since April 2010, I intentionally lost around 30 pounds and have kept them off since. I enhanced my normal exercise routine from one hour to two hours of hiking each day and even kept it up as best as I could during all treatments. Although I handled chemo much better than I anticipated (not once were my blood levels too low to not proceed with chemo), there were days where I didn't want to get out of the house; my husband would not allow me to just sit around so I walked every day, even if only for 15 minutes.
A move from my vegetarian diet (albeit with lots of cheese and fish) to an all vegan and gluten-free diet was a great choice for me. Daily fresh vegetable juices, breakfast with cottage cheese enhanced with flax oil, walnuts and blueberries, lots of salad and all vegan dishes helped with my weight loss and made me feel full of energy, even on bad days! I don’t see myself going back to my pre-cancer ways; I have developed a whole new culinary routine and love experiencing a whole new cuisine.
The MBSR course was a great way to kick-start my daily meditation practice. It is hard to describe the impact it has had on my life but it certainly improved my sense of happiness, calm and compassion. Words cannot describe the support I continue to have from my husband, family and friends. Some bonds have grown even stronger than I could ever have imagined.
It is hard to believe, at times, how much has happened since April 13, 2010. Today, I continue to enjoy life to its fullest. We love our new home in Minnesota, walking the woods daily and growing our own vegetables. I'm still on a vegan and gluten-free diet and love it more now than I did at the start. I still hike, but also enjoy the elliptical machine and an occasional bike ride. I am looking forward to the wintertime and getting out on my snowshoes.
Last but not least, mindfulness meditation is still part of my daily routine. My next check-up is scheduled for the end of October and I look forward to seeing the familiar faces at Mayo.