My name is Caroline – I am a wife, mom, dog lover, and three-time stage 4 non-Hodgkin’s follicular lymphoma thriver. I live in the United States.
When I was first diagnosed with follicular lymphoma in 2004, I was absolutely shocked. I was in the very best shape of my life. I was a big marathon runner, I had run 7 marathons in 3 1/2 years and had recently competed in triathlons. I had just run the Boston Marathon and had run my fastest marathon time in San Diego. Three months before my diagnosis, my brother and I had decided to climb Mount Kilimanjaro in Africa over Christmas. During those last three months, I had been training and working out with weights; a new addition to my running and training routine.
In retrospect, I had noticed what I had thought to be new muscle in my neck and under my arms, but now know that it was not muscle – they were enlarged lymph nodes. Two days before Thanksgiving, I went in for routine pre-travel to Africa blood work before my African vaccine appointment. The blood work had red-flagged my platelets as they were at a life-threatening level. We repeated the blood work, just to be sure, and when the second round of labs was consistent with the original results, I was immediately referred to a haematologist.
When the haematologist walked into the exam room and saw me, his first question to me was, “How long have those lumps been in your neck?” I was surprised and confused. Twelve hours later, I was in surgery having a lymph node removed. Five hours after surgery, the doctor called and said the biopsy had confirmed it was non-Hodgkin’s, follicular lymphoma. Ten days later, after a week of stage testing, I was given the news that my lymphoma was everywhere – in my stomach, my spleen, and my bone marrow. Being in my bone marrow classified me as stage 4. I was only twenty-seven years old.
I fought my cancer three different times.
My first diagnosis included eight rounds of chemo. My second diagnosis treatment was a bone marrow transplant, and my third diagnosis was six months of chemo followed by a bone marrow transplant, only this second transplant was a very different protocol and was MUCH harder and more devastating to my body.
Some of my biggest challenges have been the lasting side effects. I have learned that chemo and cancer affect everyone quite differently. Our cancer doctors have one job- to save our lives. And, once they (hopefully) succeed, they turn us loose, back into our lives, only we re-enter a life we no longer recognise. We feel weak, vulnerable, scared, and many times, we are trying to navigate our new lives while living with various side effects. Post cancer, it is up to us to find doctors to help us understand and treat our unintended side effects. The hardest part for me was going to the doctors who either didn’t believe me or didn’t understand what I was experiencing. I felt alone and vulnerable, even though I had a wonderful family and support system behind me.
In addition, before my first transplant, I was told I would not be able to have children because the chemo was too strong. Having a family was not just a dream of mine but the thing I wanted most in this life. I never gave up hope of one day having children. One year after my first bone marrow transplant, with the help of IVF, I gave birth to my daughter and two years later, gave birth to my son who was a natural pregnancy.
If I could offer support or guidance to others in the FL community, I would say NEVER, EVER lose hope. I understand that hope is a shiny object that can sometimes feel like it’s being dangled in front of us and just beyond our reach, but perhaps that is because we are not supposed to be able to reach it. Maybe hope is just something that we are always supposed to be striving for or reaching for or walking towards. Hope doesn’t guarantee a happy ending, but it does guarantee we give this life and this battle with this disease our best effort and keep us focused on our intended outcome.
When I was first diagnosed, I was told that my doctors could treat my cancer but that they couldn’t cure it. Even if I could get into remission, my cancer would come back. I came home that night and was distraught. I didn’t understand the point of putting my body through brutal chemo treatments if this cancer was just going to come back again.
So, my uncle found me crying in the corner of the bedroom that night and he said words to me that I still use in my day-to-day life.
My uncle told me that I needed to readjust my focus. He said:
“Your goal can’t be a cure. Your goal needs to be remission. You need to buy time because I’ve been reading articles and have attended lectures and there are so many amazing medical treatments in the pipeline. Your goal needs to be buying time because if you can just get into remission, chances are that when you do have to battle this disease again, there will be a new and improved treatment that is not available today. So, stand up, look forward, and take baby steps. One baby step at a time and you will get there. Just buy time and take baby steps.”
Buying time and taking baby steps. Best advice I’ve ever been given.
