Callie is sharing her story of living with a rare bone cancer called Parosteal Osteosarcoma + sharing all the lessons she learned from this journey:
“In January of 2018, 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. She said, ‘Oh don’t worry, you’re fine.’ Randomly, I decided to ask about my knee, which had been aching and losing range of motion for years. She recommended I see an orthopedic doctor. I made over 20 different phone calls to get a same-day appointment. Something deep inside me was saying, ‘You need to have it looked at, and quickly!’ God works in mysterious ways, and if I hadn’t hit my head I wouldn’t have gone to the doctor who found my cancer.
I still have flash backs of the horrible day 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 while sitting in my car, sobbing. 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! I will be with you every step of the way!’
I was rushed into a whirlwind of scans and tests, met my surgeon at Stanford three days later, and had a biopsy the following week. I was at work when Stanford called my surgeon confirming I had low grade Parosteal Osteosarcoma, a rare bone cancer. My surgeon said, ‘We need to schedule the surgery right away.’ I started crying at work and had to leave early. I was very anxious and worried about surgery! My doctor said, ‘With just this surgery alone you should be fine as long as you are monitored very closely for the rest of your life.’
On February 13, I had an eight hour limb sparing surgery, knee replacement, and partial femur with tumor excision with wide negative margins (meaning no tumor was left behind). The surgery was extremely painful and I was non-weight bearing for three months. I would try to lift my leg and couldn’t. My leg also had a lot of trouble bending and hurt so much to even try. 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 simply just being handicapped and unable to walk or do anything for 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 a ‘normal person’ to someone disabled who needed assistance with everything! I have a profound respect for people who are handicapped.
A month later, I developed a post-op staph infection, which required two surgeries and a re-opening of the entire scar to be washed out. I was given a picc line for IV antibiotics every eight hours, and an at home nurse for six weeks. I prayed I would get better. I felt hopeless. After the six weeks, I switched to oral antibiotics and went back to the hospital a few times for stomach pain.
In July and August of 2018, I had two more surgeries called ‘manipulation under anesthesia,’ to bend and crack the scar tissue in my knee that wouldn’t move. I also developed nerve damage in my leg after those surgeries. By this time, I felt I had suffered enough! My friends, fiancé and family stood by my side and gave me hope. Hope I was going to be ok and make it through. They always kept a smile on my face.
Life gave me a break from August 2018-October 2019. I was finally able to get married after delaying my wedding due to the cancer. I still had persistent knee pain and trouble bending and walking. My orthopedic surgeon/oncologist recommended total knee revision surgery with patella resurfacing to address my ongoing pain. We had it planned for Dec of 2019.
In the beginning of Oct of 2019, I went in to see my orthopedist and he said, ‘We see another spot which looks like osteosarcoma.’ 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. October 25, 2019, I had revision surgery and excision of my 1.3cm tumor, and pathology showed Parosteal Osteosarcoma recurrence. This time the margins were not negative. They said, ‘We cannot be sure if some cancer was left behind because the tumor was so close to the big artery in your leg.’ He said, ‘I am hopeful I removed it all, but I can’t be positive.’ I went back to there being no evidence of disease…for now.
Life with a cancer diagnosis is basically time in between scans. Each scan could be the best day ever, or new, shocking bad news. I get x-rays and a chest CT scan every 1-3 months, and a bone scan which checks my whole body for cancer every 6 months. They are able to monitor if cancer is recurring and if my leg hardware is loosening or not working properly. The probability of local recurrence (cancer in the same spot) is very high. They call it ‘scanxiety’: uneasiness associated with waiting for the results of cancer scans.
Cancer took my knee, and half my femur. It took my ability to run and jump. It makes my leg ache with horrible pain. 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 difficult to get used to my new ‘bionic leg.’
Cancer also taught me so much. It taught me how strong I can be. It taught me to cherish every day I have on this earth and how things can change in a blink of an eye. Cancer re-confirmed how blessed I am to have the most amazingly loving family, friends and husband as my support system. It taught me not worry about the small things and how life is short. Cancer taught me to live each day like it’s my last and to find my version of paradise every day. I love the strength that blossomed within me through my journey and I know I will never give up! I will continue to fight this lifelong battle and realize what a precious privilege it is to be alive! If anyone is dealing with a cancer diagnosis, is sick, in pain or has recently become handicapped, keep hope and faith. Fight as hard as you can each day to get better! Never give up, stay strong and always have the attitude there will be a brighter tomorrow!”