On October 11, 2018 I was diagnosed with Lymphoma. Initially went to my primary care doctor to ask for injections because I was experiencing an increase of symptoms from my B12 deficiency. My doctor checked my blood, and found out I was anemic and some of my other levels were off so he referred me to a hematologist. The hematologist also happened to be an oncologist, but that had nothing to do with my referral...at least that is what I was telling myself at the time. My request for B12 led to what felt like a million blood tests, an MRI, a CT, and finally a bone marrow biopsy. My husband and I went together to my follow up appointment to get the results of the biopsy. We were laughing and joking the whole time while we were in the waiting room. In spite of all the symptoms that I was having, we both thought there was nothing to worry about. I was too young to have anything seriously wrong with me, I JUST needed more vitamins and then everything would be fine.
Boy were we wrong. The doctor’s face became very serious and then he said “We found some lymphocytes in your bone marrow....hemolytic anemia......PET Scan....we need to have a plan...NYU in Manhattan” he was still talking but my ears were muffling the sounds and I couldn’t understand anything he was saying. It was like listening to an adult from Charlie Brown talking. My husband and I both left the appointment feeling stunned and confused. Doesn’t everyone have lymphocytes? Those are the cells that become active when you have a cold right? He didn’t say Can...STOP...if the doctor didn’t say it, than it’s not...don’t even say the C word.
We were completely lost and overwhelmed.
As soon as we left the doctor’s office, we went immediately to the internet to try and find answers. We quickly learned, according to the statistics, that Lymphoma is typically diagnosed around age 65 and mostly in men. This can't be right, they must have made a mistake. I felt so ashamed, as if I had done this to myself. I didn’t want to tell anyone because then they would know something was wrong with me. But I had so many questions and no one to talk to. I began searching Social Media, I found a few large groups on Facebook, but those groups have so many members it’s hard to make a connection to anyone. Then I looked on Instagram, and that’s when I found "Jess Decris" (@jessdecris).
Jess is a young, beautiful, female, and a survivor of Hodgkin's Lymphoma. Not at all like the old men I was initially reading about. She is the Amazon Bestselling Author of Talk Cancer to Me and the founder of Chemo Kits. Her Instagram page gave me hope and helped me through my initial diagnosis. From her, I learned not only is it OK to laugh, but that I SHOULD be laughing and making jokes about my cancer...and Yeah, Lymphoma is a type of Cancer. Jessi helped me through that as well. Jess has an online presence on Instagram, Facebook, in her Lymphoma Barbie Blog, and she has even had several articles written about her.
When I first found her Instagram profile, I was desperate for information and to find others like me. I spent hours looking back through her photos and reading her posts about her diagnosis, treatment, and recovery. One common theme across all social media platforms is the authenticity in her posts. She has something to say and she’s not afraid to be herself while saying it and her posts are positive, fun, and inspirational.
In those early days, for me, her page became a source of comfort and a link to others, who I assumed, knew exactly what it felt like to be me. I ordered her book with expedited shipping on the same day I found her Instagram account. I read it cover to cover the day it arrived. Although she presents herself online in an upbeat positive way, she is willing to admit that she has her bad days, she eats donuts, and has a drink now and then. She presents her online personality, as we all do, presenting the self that we choose to share with others. Her online persona is probably not our whole self, because, let's be honest, theres at least a tiny bit in each of us that we will never let anyone see. Some online personalities present themselves in a way that makes them come across as disingenuous, but not her.
Even the layout of her photos are presented in a transparent and authentic manner. Some Instagram users intentionally post in a way that when viewing their entire photo collection the images seem to “go together” almost matching in a way. However, her posts all seem to be real and in the moment of whatever is going on in her life. Jess Decris appears to have social media all figured out and is doing an amazing job of raising awareness about lymphoma. The only thing this girl is missing is a podcast. Hopefully, sometime in the future she will make that happen too.
Thanks for sharing this, Rebekah. Jess seems like a powerful and inspiring woman who can connect people living with cancer. What a great use of social media. When we are so critical of the negative impacts of social media, it is important to remember these types of stories.