Back in May 2020, in the midst of the pandemic, I was starting to have severe back pain. It started all of a sudden and it became so severe, I could not get more than two or three hours of sleep at night. During this time, it was really hard for me as well to focus on anything medical related as I was a full-time student and during the pandemic, I had to make the transition to online learning as a pre-nursing student. I was actually misdiagnosed and they had me do physical therapy for a while, which did not help and actually made the problem and pain worse.
Around July 2020, I was still doing summer classes and dealing with this pain that the doctors did not treat properly. I finally was able to get an x-ray, and the mass was so big that they could actually see it —- it was about the size of a medium to large grapefruit. Even after this, I still did not receive a biopsy as my doctors did not rush anything, but I was in severe pain.
Finally, around August 2020, I got a biopsy and was misdiagnosed with chondrosarcoma. My oncologist had me do chemotherapy, but it was unresponsive, because I actually had chordoma. When I did a second biopsy, they confirmed it was chordoma. The mass was located on my T3 and T4 spine and I had fractured vertebrae at this point. So after one round of chemotherapy, they completely switched my treatment to radiation. At this point, I was being treated at Sutter Health, but also met with an oncologist at Stanford Medicine. At this point in time, I was getting extremely weak and losing weight and still suffering from severe pain from the mass as it was pushing on my spine and airway.
Eventually I was unable to finish my radiation treatment at Sutter and was rushed to University of California — San Francisco (UCSF) hospital to get an emergency surgery to remove the tumor. I got the mass removed and had hardware installed in October 2020 by Dr. Ames, my neurosurgeon. Shortly after, I had many complications such as a chronic chest infection and a perforation to my esophagus. I also had paralyzed vocal cords and I had to get vocal cord injections and have a trach for around eight months after surgery.
As of now, I am doing quite well. I have been in remission since October of 2020. I did undergo a few more surgeries to fix some of the complications from the first surgery. I underwent an esophageal reconstruction, and got a supercharged jejunum to replace my old esophagus at Stanford. As of February 2023, I have been able to eat again (I was on tube feeds since October 2020). I have also been on more than five different antibiotics to treat the chronic infection on the hardware in my back. As of right now, we are working with UCSF and Dr. Ames to replace the hardware with bone and to wean me off the antibiotics. I just recently got accepted into nursing school and work as a tutor at Kumon. I am doing much better, do not have any more dietary restrictions and can resume physical activities normally.
When I was diagnosed at 19 years old, I had no idea if I was going to live or not, however, I beat the odds. That is what is amazing — that I never gave up! I was able to maintain a 4.0 GPA throughout this journey and get accepted into nursing school in California during treatment. You can do it as long as you keep pushing and set your mind to it.
This experience has taught me that life is so precious and simple things that were taken away from me like eating, talking, and walking are so valuable. I am so happy to have those things back in my life that were once gone. I am so grateful to be here and be alive.
My team at UCSF was very helpful. I had a wonderful team at neurosurgery and thoracic oncology. They all took care of me so well and I am so glad Dr. Ames took me in right away and treated me. My treatment was especially hard because I could not see many people, like my family, during the pandemic — but my mom really advocated for me and made sure I was taken care of. My parents took very great care of me during this time and supported me the best they could, even by sleeping over in the hospital for around three months while I was in recovery.
I definitely learned a lot during my experience with chordoma. Fortunately, the amount of research, resources, and doctors with expertise in chordoma are increasing, which is great.. I also believe that joining the chordoma Facebook group (or Chordoma Connections) is a good choice as you can reach out to many others sharing similar experiences and gain support.
My advice to someone who is newly diagnosed is never stop advocating for yourself. Never stop asking questions. You know your body the best. I wish I asked more questions in the beginning and put less trust in the hands of others especially when I did not know what was going on. If you feel like something is not right, continue to ask questions, get second opinions, and see a chordoma specialist. Please seek treatment from someone who is knowledgeable about chordoma as it is such a complex disease that you want to take very seriously.
If you are scared, it is okay to feel scared. Your feelings are valid, but just know you got this! It can be hard to see the light at the end of the tunnel, but never give up. You are strong and amazing. I always made a joke to myself that once I was fully recovered and was able to walk again and talk, I would go to one of my favorite places, which was Disneyland. And I did just that. Set some goals, live life to the fullest, and keep your head up.
I found the Chordoma Foundation through my mom who did some amazing research, and it was also mentioned through the chordoma group on Facebook. The Foundation helped us find Dr. Ames, as there were not many local chordoma specialists during that time three years ago.
I definitely feel like having a support group especially for younger people is helpful!