In October of 2021 I started experiencing what the doctor called sciatica pain. Occasionally I would have pain in my sacral area, but I brushed it off, not thinking anything of it. That same October, after my 30th birthday, I started having horrific pain in both my legs from my buttocks to my toes. I went back to the doctor and she sent me to get X-rays of my back.
When the X-rays came back all clear, I told my doctor: “no, there is something there- and I need an X-ray done of my pelvic area.” She sent me again to get X-rays of the pelvic area, and when she got the images back she called me and informed me she was sending me to get a CT scan STAT.
The CT report came back and I remember getting that phone call to come into her office. I knew my life was forever going to change. She nor other doctors in the area had ever heard of chordoma so she called Stanford and UCSF to see if they could take my case. I ended up choosing Stanford after meeting with the chordoma team there, and all the tests and treatments started.
I had a biopsy done to confirm that it was chordoma in April of 2022 at Stanford. Once it was confirmed, my wonderful team of doctors got on the ball and I began six weeks of pre-op radiation that lasted from May through July. After my six weeks of radiation, I rested until my surgery in August of 2022. My surgery was split up into three separate days. I was in the hospital from August 8th-November 12th, 2022. After going home in November, I rested until I started two weeks of post-op radiation in March of 2023.
I’m doing the best I can. Even though this surgery changed my life forever (and not in the way I wanted it to), I am so grateful for each day and another opportunity at life. I have bilateral foot drop and can ambulate with a walker, but I’m hoping in time I will get back to walking independently. I attend outpatient therapy twice a week and I have the best team of physical therapists. I wouldn’t have been able to get back on my feet if it wasn’t for my Physical Therapist Aaron and my Occupational Therapist Mikaela at Encompass Health. I’m thankful to still be here today watching my son grow. My husband and son are wonderful and help me with any needs I have. I also have two very loving and attached dogs that don’t leave my side.
The support of my family and friends has made this experience a lot easier for me. If it wasn’t for my parents, my sister, my mother-in-law, my mom’s side of the family, and my aunt and uncle on my dad’s side, I don’t know how my husband, son and myself would have gotten through this time. I feel so fortunate to have loved ones helping because I know we are all not fortunate enough to have family there to help. I don’t take that for granted.
Advocate for yourself. You know your body best and if you feel there is something wrong but your doctor is saying otherwise push for those tests.
Being a part of a chordoma support group has been so helpful because it’s nice to know that although we are such a unique group, we are all there to support one another. No one knows what we are going through, and it’s nice to share my story with those who understand me.
