My Crazy Roller Coaster Ride with Multiple Myeloma

Prior to 2012, I was living the life I loved. I was the mother of two beautiful children; my son Matthew was 22. He was building a life of his own, but my daughter Angelina was only six, and still needed me so very much. I had left my country the Netherlands a couple of decades earlier so we had no family support and at the time of my diagnosis I was separated from my husband. Angelina and I were extremely close. I loved everything about her. I remember when she was just a couple of weeks old thinking to myself “I don’t just love this little girl, I like her.” That is the relationship we had, and we still have to this day!

I believed I would never get cancer

I was also very satisfied with my professional life. I was a holistic practitioner helping people feel better through massages therapy, reflexology, colon hydrotherapy, and all sorts of other interesting holistic modalities. I truly believed in what I was doing. I believed that the vegetarian alkaline diet I was eating and preaching about was preventing me from getting sick. I believed that by keeping my body and mind clean I could never get cancer.

I did not like doctors, I did not trust medicine. Through my education and from my childhood, I was taught that medicine was bad and that chemo killed. Imagine the fear when I heard those three little words “you have cancer.” It took more than six months, several ER visits and many misdiagnoses before I was told I had multiple myeloma. By that time, I had three tumors on my spine, with fractures that caused severe pain, and so many lesions on my ribs that they looked like Swiss cheese. I was severely anemic and I could barely make it up the stairs to my apartment. My resting heart rate was 94 beats per minute, a far cry from my regular 56, a fairly slow rate not unusual for athletes. I had been an avid runner and bike rider most of my life and even participating in the occasional triathlon.

Battling myeloma and reaching a milestone

What do you do when you are a holistic practitioner afraid of medicine, and you find yourself with stage III multiple myeloma (there is no stage IV). I was devastated to find out that everything I had believed in had not been able to save me from the dreaded C word. I have a long list of people that helped save my life, but my daughter will always be at the top of that list. Without her, I surely would not have had the courage to fight, but as a mother, I felt a strong obligation to be there for her. Sure I was scared to take the medicine and do the stem cell transplants, but she was always there to remind me what it was I was fighting for.

At the time, because of my otherwise great health, I fully believed I would be one of those lucky patients, you know, the ones who only need a few months of induction therapy, followed by one stem cell transplant and return to their previous life. Unfortunately, that was not to be my story.

Five years, two stem cell transplants, several radiation treatments, and every possible combination of approved myeloma drugs later, a total of thirteen lines of treatment, I relapsed at the end of last year, just a couple of weeks after I held a fundraiser for my fiftieth birthday for multiple myeloma research. Turning fifty is a big milestone for anybody, but for me, turning fifty felt like it was against the odds, and I knew that I would need research to keep me going. My daughter, who had turned seven three weeks prior to my diagnosis, was now twelve years old, and still needed me.

After clinical trial, living the life I love

I had heard about a trial where the body’s own immune system is trained to kill the myeloma. I believed that this was the one for me. Getting into it was a big challenge, but in March of this year I got in and as a direct result of this trial, I have now been not only cancer-free for the past nine months, but chemo-free as well, which is huge in the world of myeloma. I once again was able to live the life I love. I went back to teaching yoga and I started doing reflexology again, something I did not think possible just a year ago. I became a fully involved mother, much to the annoyance of my now teenage daughter. Sadly on my one year post CAR-T anniversary I found out that my myeloma was trying to creep itself back into my live. I found out through a blood test followed by rib pain.

I don't know where this crazy journey will take me from here, but till I am told otherwise I will continue to live the hell out of life. I still believe in living a balanced life, I eat and drink in moderation, and there is no better way to start my day than doing some yoga and meditation. Cancer taught me a lot and I came to realize how important innovation is. It is because of continued research that I get to keep being a mother, a wife, and a friend. It is because of innovation that I still get to learn and experience the beauty life has to offer.

I wrote a book about my experience titled, "A Pilgrimage Without End" and am currently working on my next book, "A Pilgrimage Toward Health, Keeping Hope Alive".