Guest Post: When Will This Be Over?
Sarah Rostock, 33, is a two-time childhood cancer survivor and stem cell transplant thriver! Recently, she raised over $10,000 for childhood cancer research and shaved her head to stand in solidarity with children fighting cancer.
When Will This Be Over?
The question every childhood cancer patient has thought: When will this be over?
Is it when you reach remission or no evidence of disease (NED)? Is it when treatment is over? Is it when you have reached the five-year mark of remission or NED and you are finally considered “cured”? Or is it when one day you are living your life and you don’t, even for just a millisecond, think about cancer?
Unfortunately, I’m here to validate that surviving cancer is never truly over.
It has been eighteen years since I was diagnosed with a rare form of childhood leukemia, thirteen years since hearing the cancer had returned, and twelve and a half years since I received a life-saving stem cell transplant.
I experienced six and a half years of remission the first time, during which I:
Passed 8th grade
Got into Governor’s School for the Arts
Performed in numerous shows
Met my now husband
Got into college
Graduated high school
Picked a degree
Fell in love with my now husband
Shaved my head twice for the St. Baldrick’s Foundation.
Completed freshman and sophomore years of college
I was living my life, but childhood cancer was always there. I had passed the five-year mark and entered my children’s hospital’s survivor program. This is when I learned about everything that would be monitored throughout the rest of my life because of the treatment I received.
We knew there would be repercussions from treatment, but what choice did we have? What was the alternative?
Luckily, I had survived three months of intensive chemotherapy which kept me in the hospital 90 days straight, and one and a half years of maintenance chemotherapy. On the surface, it seemed I managed to make it through mostly unscathed. Some heart damage and an executive processing disorder (otherwise known as chemo brain)? Worth it!
But it didn’t last. A year and a half after hitting the five-year “cured” mark, the cancer returned. I vividly remember the day I relapsed. I hadn’t been seen in a year. Looking back there were signs something was wrong.
I remember going a little deaf when my oncologist told me the cancer had returned. Time seemed to slow down. I remember the sadness in my oncologist’s eyes and the shock on my mom’s face. I could hear the collective heartbreak in that small exam room. It was different this time around. We had more knowledge of childhood cancer, which felt more like a curse.
So I started down the road of preparing for stem cell transplant. This time it was all different. I was a young adult with childhood cancer. I would still be treated on the kids’ side of things, but there would be some differences.
One of those differences was, since I was 21, I was included in the meeting of signing the official documents of agreeing to treatment. That meeting was the first time I met my transplant doctor. He was very serious as he should’ve been --it was a serious matter. When he placed a stack of paper in front of me to read and sign, I simply looked at him and said, “Okay, where do I sign?” He replied that because I was over the age of 18, I had to read and understand all of the potential late effects I could have from the different medications and treatments to prepare for the transplant and the transplant itself.
This was the moment he was introduced to how stubborn I was and what he was in for being my doctor! We went back and forth for at least 10 minutes, when finally, I told him, “I am not going to read about all the complications that could happen! What is the point? Am I going to read them and say, ‘Oh no, I don’t think I’ll do the transplant, I’ll just die instead!’” It was blunt but necessary at the time. In the end, I promised I would read the papers someday. Instead, my mom read them and gave me the abridged version.
Unfortunately, not reading the complications didn’t keep them from happening.
I am thirteen years post stem cell transplant from an unrelated cord blood donor, currently resting at 99.98% donor cells, cancer free, and considered “cured”.
But I live daily with the following late effects that are directly related to the treatment I received to cure my childhood leukemia:
Infertility: post-menopausal since 2011 at the age of 22
Heart damage
High blood pressure
Osteoporosis
Bone fractures
Arthritis
Hypothyroidism
Long lasting gut trauma from Graft vs Host disease
Gall bladder attacks and removal
Anxiety
Post Traumatic Stress Disorder (PTSD)
Executive Processing/Attention Deficit Disorder
Secondary cancers: I am considered high risk of developing breast cancer, lymphoma, melanoma, and colon cancer.
I’m #curedbut am I? The after effects of getting me to be “cured” will follow me for the rest of my life.
So, what can we as cancer survivors do?
Tell your story! Telling my story is something I am passionate about. I truly believe that every childhood cancer patient, survivor, parent, and loved one should tell their story.
Why? I have been shown time and time again that sharing your story only HELPS others. No matter how much we like to think that we are unique beings (and we certainly are in amazing ways), there are others that are going/have gone through, what you are going through. Countless people that need to hear your story, to help them see tomorrow on the other side of being “cured”.
There will always be people that don’t get it. They ask “Why are you still talking about this?” “Are you still sick? No? Then stop talking about it.”
When I first encountered these questions, they made me feel like I was crazy for still talking about my cancer journey. But now, I know better. I know people say these things when they are uncomfortable, but the very idea of children going through cancer and all that comes with it should make them uncomfortable.
Editor’s Note: The first week of April is Adolescent and Young Adult (AYA) Cancer Awareness Week. This annual event is an opportunity to shine a light on the unique challenges that teen and young adult cancer patients and survivors face. At Children’s Cancer Cause, we’re featuring a special AYA Week campaign focused on the public misperceptions about what ‘cured’ really means in survivorship using the hashtag #CuredBut.