Emily’s Story
Emily
State: Kansas
Congressional District:
Diseases
Cancer
Issues and Challenges
Emily has encountered: Access to Expert Providers, Access to Medicine, Insurance Issues, Medical Records Access, Mental Health Access, Job Insecurity / Loss
My Story
If you would have asked me 1 year ago what my life would look like today, I would have never in 1 million years guessed that cancer would be part of the equation.
It all started with a slight step out of the garage. Simultaneously I heard a loud pop and felt the most excruciating pain I have ever felt and immediately bent over at a 90 degree angle and could not move.
My 10 year old daughter called an ambulance for me and I was rushed to the nearest emergency room. After an X-ray it was quickly determined that there was something much bigger looming. They saw a massive black hole in my L4 vertebrae.
Upon being admitted to the hospital more tests and scans were ran and it was quickly determined that a type of cancer had eaten away at my vertebrae and it had hollowed out so much of that vertebrae that it snapped resulting in a broken back (hence the pain).
I was admitted to the hospital and immediately tests were began all while trying to manage the pain of a broken back. My village immediately showed up and was by my bedside and never left.
I knew when I heard cancer that I wanted to be treated at University of Kansas Medical Center. If you are from the midwest, or even further, you know that this is the institution with all of the credibility towards treating and researching cancer. I was not admitted to KU right away because at the time I just needed the nearest emergency room. I went through the paces at this other hospital to manage my back pain and when released had a plan in place for starting at KU.
This is where I would have been lost. I am lucky enough to have a large group of friends who are nurses at KU. They IMMEDIATELY started making phone calls to people in the oncology department and because of their calls and advocacy I got into the top multiple myeloma oncologist at KU AND they got me in within weeks which is unheard of.
This is where my desire to advocate for others began. Now being on the other side of this for the time being, I can see how lucky I was to have the village that I did. They took time out of their schedules and knew who to call and questions to ask to get me in and get this treated as soon as possible. Without them I would have been totally lost. Those diagnosed with cancer hear possibly the WORST news of their life and that day need to start thinking about what the next steps are. Without my friends, I would not have known who to call where to go; nothing. I can’t imagine what those go through that don’t have family or friends with this kind of knowledge. Do they just go with what the doctors say and not get a second opinion? Do they know how to advocate for themselves? What questions to ask?
Being diagnosed with cancer is nothing anyone plans or can be ready for. It upends your entire life and you are put into fight or flight. Without guidance from friends to hold my hand and walk me through this I would have never made it into the doctor I did and received treatment as quickly as I did. My story today, post transplant, might be very different.
My Motivation and Inspiration
I am a single mom to a 10 year old daughter. I have to see her grow up.
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