Fierce, Fighting Friday
Stephanie O’Rourke, 35
Howes Cave, NY
“The biggest form of support that I felt while in treatment was when people would just do things without having me to ask.“
Provide a brief biography to describe your life pre-diagnosis
My name is Stephanie, I am 35 and I work as a bookstore manager at a local college. Before I was diagnosed, I was just your typical adult who had no idea what they wanted to be when they grew up. Pre-cancer and pre-pandemic (COVID-19) I would often just spend my days working and chilling at home. Seeing friends and family when I could, nothing too awfully exciting.
Did you have any symptoms leading up to your diagnosis? What led you to see a doctor?
I was diagnosed with Extraosseous Ewing’s sarcoma. I had a large tumor in my right thigh. Before I was diagnosed, I started having sciatica issues. I was the kind of person that never went to the doctors for anything because I couldn’t afford the copays/medications etc. I finally decided to get a physical as it had been a while and figured I could mention the pain while I was there. My doctor said that for sciatic pain they either would send me to physical therapy or surgery, neither of which I could afford so I decided to just try some exercised I found on YouTube myself and hope it got better. Well, it didn’t and one day I noticed a strange lump in the back of my thigh and decided to go back to the doctor to have that looked at, wondering if that could possibly be the reason for my pain. My doctor suggested having and ultrasound which turned into an and MRI and a biopsy.
How did hearing the words “you have cancer” make you feel?
Once I was in the office getting the results from my biopsy I kind of had the thought in my head already that it was cancer, even though everyone in my life kept telling me it would be benign and that I would be fine. I knew it was something else. When my oncologist told me that my tumor was malignant, I don’t think I had a reaction, I was alone at the appointment and was just trying to get as much information from him as possible. I didn’t want to leave the appointment and feel like I spaced out. Once I was back in my car that’s when things hit me, and I didn’t start crying until I realized that I had to call my mother and tell her I had cancer. I knew it would break her heart. I then realized I would have to tell the bad news to everyone else I loved and that was the worst part.
What do you know now that you wish you had known back then?
I was diagnosed August of 2019. It has now been 3 months since my last chemotherapy treatment and if I had known how hard the last year of my life would have been, I don’t know that I would have chose it. I am happy that I went through treatment and that I am NED now, but I did much of my treatment alone, thanks to the pandemic, and there were so many times I wished that I could just stop. So many days that I couldn’t even get out of bed. I did a lot of work “prepping” myself for chemotherapy so there isn’t much that I “wish I knew” because once I was told that was my treatment, I asked Dr. Google every question I could think of and purchased all the things that everyone recommended on the forums I could find. I wanted to be over prepared rather than under prepared.
How has life changed? What has been your biggest challenge since your diagnosis?
The main change of my life was that I basically lived at the doctor’s office. I think before I went to find out what was wrong with me, it had been like 5 years since I even went to the doctors. After I was diagnosed, I was there every week. The chemo I went through some weeks I had to go 5 days in a row. The biggest challenge for me was realizing that I couldn’t do the things I used to. Even with the pandemic, in the summer there was so many opportunities for safe activities that I just wasn’t healthy enough to do. My white blood count was usually in the toilet. I would have one weekend a month where my blood cells would cooperate with me enough that I felt safe to go out into the world. I felt trapped a lot of the time.
What do you wish people knew about supporting a loved one with cancer? What have been the most helpful ways that friends and family have supported you?
I wish more people knew that sometime support is just letting your loved one talk. Just listen to them, they don’t expect you to say “the right thing” they just want to be heard. There were so many times that I would try to tell people how I was feeling, and they would automatically want to just tell me how brave and strong I was, but I didn’t feel that way.
The biggest form of support that I felt while in treatment was when people would just do things without having me to ask. A great example is when I was admitted to the hospital for a few days because of my blood counts and because I had been in treatment the week before my house was a wreck (which is usually what happened on chemo weeks, I would leave the housework to be done another time when I felt better) I asked my aunt to come and check in on my cats and feed them for me as she was the closest to me. When I got home from the hospital my dishes were done and things were picked up. I felt a little embarrassed that my aunt had to see my house like that, but it was such a load of my shoulders that I didn’t have to do that stuff after just being in the hospital for 3 days. I could focus on resting. It was a little thing, but it made such a bit difference to me.
What was your treatment protocol?
I was diagnosed with Ewing’s sarcoma which is usually a bone tumor that is in younger people, but mine was in the soft tissue of my thigh. Ewing’s is an aggressive kind of cancer, so the treatment is equally so. I had 2 different chemotherapy “cocktails.” One week I would have chemotherapy 5 days a week for 8 hours a day. Then I would have 16 days off and then the next cycle would be the other cocktail which was one day for about 6 hours. Then I had 20 days off. Both treatments came with their own set of side effects which after about 6 months I had kind of gotten the hang of.
THRIVR 