The AYA of it All

For some reason, possibly media desensitization, I always thought I would get cancer, I just always thought I would be old. I envisioned being in my late sixties or seventies and we would be so technologically evolved as a society that it would be a single doctor appointment or single surgery that would take care of it. I never lived in fear of cancer; I always thought of it in obscurity. I never thought that I would get cancer at the time I was looking to have a second baby or that I would be an AYA cancer patient.

AYA cancer patients and survivors are the most underserved patient population by age and are also more likely to receive a late diagnosis or to be misdiagnosed, compared to other age groups. Patients, and even their doctors, often do not consider cancer because of how “rare” it is for our age group. Medical debt or even bankruptcy are the most harsh financial realities for AYAs in the US.

As an AYA cancer patient I felt unheard, I felt too young to be in this position. I felt sad, confused, and lost. No one else is going to fight for you the way you will fight for your own life; you must advocate for yourself. Thank God I have a fantastic primary care provider (PCP). He asked me the appropriate questions and determined that I was a candidate for diagnostic and preventative mammograms. But initially I felt slightly stupid for even asking my PCP for a referral for a mammogram at thirty. I felt interrogated when I went in for the procedures.

“How old are you?”

“Why are you here?”

“Does this run in your family?”

“Do you have a lump?”

“What is your birthday again?”

As an AYA cancer patient, you are not a pediatric cancer patient or an older cancer patient. Your friends are moving on with their lives, graduating high school and college. Getting married, having children, going on vacation or out to dinner. Meanwhile back at the ranch, you are in the chemo suite, having surgery or stuck at home because you are immunocompromised, and you do not want to get sick or risk having treatment pushed back.

You are faced with your own mortality at a young age. That is a torturous experience that can stay with you for some time, if not forever. I know that my personal experience has been filled with anguish, stress, and confusion. I have lost “friends,” my sense of self, and years of my life along this journey. But in hindsight, I have gained more than I lost.

I look at old photos. Some pictures of me before diagnosis look like me and feel like me. Some look like me but hollow, like my soul is missing. Others do not look like me at all. I do and do not know who I am anymore. I like some things I used to and do not care for other things I did.

I have been left behind and ghosted by friends both old and new, and that was a lesson learned the hard way. It just reinforced my initial thought not to tell everyone about my diagnosis. In the beginning, I struggled a lot with what and how much to share about my diagnosis, journey, and treatment. To be honest, in the beginning I was so scared to type one word about any of this. I did not want to speak a more aggressive situation into existence, but also, in the beginning it was very hard to even think about. It was hard to come to terms with my diagnosis until I looked or felt “sick.” Every thought ended in my dying, leaving my husband, son, and family without a Lauren.

To further protect my heart (of glass, protected by stone), I decided to keep it a little close to the chest. Those actions of others made me feel dirty. I felt used up and like I was being discarded. That is where your support system comes in. If you get life-changing news and you lose your hair and go through treatment but nothing else changes (i.e., your friends and things), then it is easier. But I felt like Pig Pen from Peanuts. I felt like there was a weird film on me. I felt like others could see it or smell it and maybe that was why they did not want to be around me or want to support me through this. I felt marked for death. I felt like I had found something that was not supposed to be found that in turn saved my life. I do not know who I thought was eventually out for me, but I went through a period of time where I was just getting increasingly more scared of everything. The strong woman who had demanded the mammogram that got me in this situation had been scared into submission and herded away.

I am in a better place now to be able to talk about it, but earlier in my journey I just could not think or even talk about it without breaking down. I have found my voice and figured out how I would like to convey the message. This may be common in other cultures and races, but a lot of African Americans do not share a lot of their medical information, and rightfully so. There has been a longstanding mistrust between African Americans and the medical community (see the Tuskegee Study from 1932). But keeping my breast cancer diagnosis to myself after being diagnosed in my mid-thirties does not help anyone. I believe that one of the reasons for all of this is for me to help.

If the two women (Kirby and Emily) that I knew personally before my diagnosis had not been so open and forthright with their diagnosis and journey when they were also diagnosed as AYA cancer patients, I would not have had a support system or knew what on Earth to do or where to start. A lot of people in the AYA cancer age bracket do not really think about it, and sometimes you need to see someone who looks like you or you identify with to help you realize representation matters.