Cancer limbo: the unfortunate in between

I sat down on my bed and opened yet another piece of mail — a bill — from my oncologists office and tried to hold back the tears. My oncologists office. Those words still sound so foreign to me.

How do I have an oncologist? I’m a perfectly healthy 25-year-old. Okay, maybe perfectly is a bit of a stretch… I’m overly stressed, I probably don’t sleep enough, and I’m sure I drink too much. I’m a decently healthy, and perfectly normal, 25-year-old. Or at least that is what I have been trying to tell myself, but I am finally admitting now that not only is that not true, but it’s okay that it isn’t.

To provide full disclosure from the start, I am not what you would probably define as ‘sick’. I have never entered that office only to be told “you have cancer.” I’m not my mom or my grandma, my aunt or my cousin, my former high school teacher or one of my closest friends. What they all went through, hearing those words, I cannot fully comprehend because I’m lucky. Or at least that is what they tell me… because I don’t feel lucky.

I know that I am blessed that the, not one, but two biopsies I had in a 10-month span between September 2015 and July 2016 came back negative. But being blessed does not equate to being lucky, and that is where my frustration lies.

In the same way that some believe depression is not an illness, I have found myself listening to unwarranted statements and comments that tell me that I am not ‘sick’ either, and in fact I am lucky, because there is not something physically wrong with me (yet). I cannot accurately explain how frustrating this feels.

Physically, my body is not fighting this battle. Yet every year it is suggested that I have two routine office check-ups, two breast ultrasounds, and one MRI with contrast dye to monitor changes and allow for early detection, god forbid. Years such as this, where the MRI comes back showing a ‘suspicious mass’, you can add to that list a mammogram and an ultrasound guided biopsy. So while I am not physically fighting this illness… it sure feels like I am.

Add on top of that you have the emotional toll. Being diagnosed as high-risk is something that is hardly ever talked about because the hardest part and the most damage happens underneath the surface, in the same manner that mental illnesses exist. You cannot see it, but the anxiety and the fear and anger and sadness, they are all there.

How could they not be? How could I not be mad that this is happening to me? How could I not be fearful for the future? How can I not be anxious that the next time, I won’t be lucky? And how could I not be sad that my life has been permanently altered by all of this?

My first biopsy was a skin-punch biopsy. I was the one who brought up the issue to my doctor, albeit I had no idea that the irritation I was experiencing could potentially be a form of breast cancer. I knew the spot existed and I made the call to ask questions and make sure it was nothing. That first experience last year, it was a lot easier to deal with.

My second biopsy was the ultrasound guided biopsy for a tumor that was found during my now routine MRI screening. I remember answering the phone at work, knowing it was my doctor calling with the results but whole-heartedly believing there was nothing to worry about. I remember the gut-wrenching and heart-stopping, knock-the-wind-out-of-you feeling that followed when they told me that wasn’t the case. I remember barely being able to get the words out to my supervisor and leaving for an extended lunch break. I remember calling my mom, both of us trying not to cry and act like it was all no big deal. I remember the exruciating 8 weeks of waiting from first hearing about it to getting the final results back, that the tumor is benign.

I will never forget all of that. I will never forget it, and I will never again feel safe and secure in my own body. See that was the turning point for me, that phone call and that report was the moment I started fighting against a disease that hasn’t begun. I will never be able to change the fact that I was, and still am, unable to feel the mass… even when my doctor showed me all of my imaging results and its exact location. The anxiety and the fear that I won’t be able to catch something, something that could potentially be so dangerous to me, is absolutely terrifying and it is something I struggle with every day.

I have been fairly silent on my situation and diagnosis up until now, I haven’t told many people and I hadn’t really planned too. But I think it’s an important conversation to have, and I hope that someone out there who is experiencing what I have experienced reads this. I hope they know they are not alone and that the way they feel is 100% justifiable and okay.

And I hope that those who can’t relate can, at the very least, take away just how important early detection is. Be diligent, learn your body and what feels right or wrong, and never hold back when you feel like something is out of place. Early detection saves lives, and even though it’s caused a seemingly endless journey, I will never regret telling my doctor about the concerns I had that lead to that first biopsy and the diagnosis of being high risk, because one day… these tests and procedures, may just save my life.