It’s been 20 months since my diagnosis of metastatic breast cancer, and I wanted to give you an explanation of what it means, as I realise there is a lot of misconception out there.
When you read up on the internet, most patients are diagnosed with metastatic breast cancer after they had treatment for their first occurrence of the disease and it can be years before the cells spread into other tissues such as the liver, lungs, bones or brain.
Not for me! Unfortunately, I faced a diagnosis that the cells had already spread into the bones such as the spine, ribs, pelvis, and sternum, even though I was completely free of symptoms such as pain, at that point.
Initially, I could not imagine having conventional treatment such as chemotherapy, as I’m a big believer in our body’s and immune system’s strength, which initially led me to start an alternative treatment method. The doctors and advisors running that program had advised me to consider some conventional treatment first, due to my excessively high growth rate. When my health deteriorated quickly, I had to reconsider and go the “conventional way”, which wasn’t an easy decision. I started with the standard treatment for Her2 positive mamma carcinoma in April 2017.
At the end of September 2017, I finished the weekly schedule of Paclitaxel, but continued with Antibodies, Perjeta (Pertuzumab) and Herceptin (Trastuzumab), every three weeks plus Bisphosphonate for the bone density every four weeks.
I’m fortunate that the treatment has had such success. There are no tumors visible on the CT scan, I am mostly free of pain, even though I am 4 cm smaller today due to fractures in my spine resulting from the metastases. Most people would say I have a normal life and would not guess that I’m sick. Sometimes I even struggle myself with the thought.
Saying: “I have cancer” rather than saying: “I had cancer” makes a big difference and it’s hard to understand the difference if someone has not gone through this experience.
So, what does living with metastatic breast cancer look like for me?
What is my ‘normal’?
At the moment my disease is considered a chronic illness. The medical side looks as follows. Every three weeks I receive antibody treatment and every six weeks bisphosphonate. Every nine weeks I need to see the cardiologist for a heart ultrasound and an ECG and every 3 to 4 month I have a CT scan to see if my disease is stable.
Appointments with my psychologist are scheduled once a week, which helps a lot with the mental side of things especially the feelings that usually come up before a CT scan (this might be worth a blog post on its own). I regularly make coffee enemas to help my liver cope with all the things going into my body, and I have mostly a very healthy diet, preparing most a lot of food from scratch.
A vital cornerstone though is my daily yoga practice. One of Mr. BKS Iyengar’s quotes is a permanent companion: “Yoga teaches us to cure what need not be endured and endure what cannot be cured”. It’s hard to put the benefits and effects of my yoga practice into words, but I will try to give you an account of my experience in another post.
I’m very happy that the treatments are working and that I can live an almost normal life.
Still, life will never be the way it was before. Even though every life has an expiry date, we’d like to think that it will be decades away. I hope this is the case for me, even though most studies tell us differently.
But one thing is inevitable for all of us, no matter if you are sick or healthy. We can’t change the past, and there is no reason to worry about the future, the only truth we have is the present moment.