Callie’s Life Changing Bone Cancer

Reading Time: 4 minutes

The night before I found out I had cancer, I fell and hit my head. I went to the doctor the next day and asked her if I was ok and she said I was fine. I decided to ask about my knee which had been aching and losing range of motion for years and she recommended I see an orthopedic doctor. I made over 20 different phone calls to get a same day appointment. Something deep inside me knew I needed to have it looked at urgently. God works in mysterious ways: if I hadn’t hit my head I wouldn’t have gone to the doctor who found my cancer.

I still have flashbacks of the horrible day in January 2018 when I had my appointment with the orthopedic doctor. He looked at me with concern and told me the words I never wanted to hear. ‘I’m sorry you have cancer.’ My heart dropped and I cried with disbelief. ‘How could I have bone cancer at age 25?!’ I called my mom immediately after I got the news, sitting in my car crying alone. My mom was shocked, but remained positive and was a huge support for me. My fiancé (now husband) said, we are going to get through this and I will be with you every step of the way.

I was rushed into a whirlwind of scans and tests, met my surgeon 3 days later, and had a biopsy the next week. When my surgeon called to confirm I had low grade parosteal osteosarcoma, a rare bone cancer, and said we need to schedule surgery, I started crying and had to leave work early. I was very anxious and worried about surgery, though my surgeon said that with surgery alone I should be fine – as long as I was monitored very closely for the rest of my life.

I had an 8-hour limb sparing surgery, knee replacement, and partial femur with tumor excision with wide negative margins, meaning no tumor was left behind. The surgery gave me so much pain and I was non weight bearing for 3 months. I would want to lift my leg and I couldn’t; I had a lot of trouble and pain bending my leg. My fiancé spent every night with me at the hospital, took me to physical therapy every day, and selflessly gave up his life to take care of me – even before we were married. 

My worst moment was becoming handicapped and not being able to walk or do anything by myself. I remember the first time Jose, my fiancé, took me to the mall in my wheelchair and everyone was staring at me. It was hard going from being an independent person to someone who is disabled and needed assistance with everything. I have a profound respect for people with disabilities now. 

A month later, I developed a post-op infection that required two surgeries. I was given a PICC line for IV antibiotics every eight hours, with an at-home nurse for six weeks. After that, I switched to oral antibiotics and went back to the hospital a few times for stomach pain. I had additional surgeries and developed nerve damage. I wished and hoped that I would get better. I felt hopeless and very sick; I thought I had suffered enough! But my friends, fiancé, and family stood by my side and gave me hope that I was going to be ok and make it through. They kept a smile on my face and made sure that I was going to be ok. 

After that long summer, I finally was able to get married after delaying my wedding due to cancer. But I still had persistent knee pain and trouble with bending and walking. My orthopedic surgeon oncologist recommended total knee revision surgery with patella resurfacing to address my ongoing terrible pain. 

The following fall, in October 2019, I went in to see ortho and they saw a spot that looked like osteosarcoma coming back. I got an emergency CT scan that showed a new tumor in the soft tissue of my leg near where my first tumor was. My heart dropped and cancer flipped my life upside down once again. I had revision surgery and excision of my 1.3cm tumor that pathology was parosteal osteosarcoma recurrence. This time the margins were not negative. They are not sure if some cancer was left behind because the tumor was so close to the big artery vein in my leg, but my surgeon was hopeful that he got it all out. I went back to being no evidence of disease. 

Life with a cancer diagnosis is life between scans. Each scan could be the best day ever with or shocking bad news. I get x-rays and chest CT scans every one to three months and a bone scan every six months. The probability of local recurrence is very high. I live with scanxiety: the uneasiness associated with waiting for the results.

Cancer took my knee, it took half of my femur. Cancer took my ability to run and jump. It made my leg ache with horrible pain all day long. It gave me an infection and sent me to the hospital many days and nights. It made me mourn of the loss of my real leg. It was very hard to get used to my new bionic leg. 

Cancer also taught me a lot. It taught me how strong I was. It taught me to cherish every day I have on this earth and that things can change in a blink of an eye. Cancer reconfirmed how blessed I am to have the most amazing loving family and friends and husband as my support system. It taught me to not worry about the small things and that life is short. It taught me to live each day like it’s my last and to live my version of paradise every day. I love the strength that blossomed in me through my journey fighting osteosarcoma and I will never give up! I will continue to fight this lifelong battle and have realized what a precious privilege it is to be alive! 

By Callie White