‘You need to have it looked at, and quickly!’ My heart dropped. I went from a ‘normal’ person to being disabled.’: Young woman survives rare bone cancer twice, ‘Cancer taught me to live each day like it’s my last’

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“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 3 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.’

Courtesy of Callie White

On Feb 13th, 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 was extremely painful and I was non weight bearing for 3 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 everyday, 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.

Courtesy of Callie White

A month later, I developed a post op staph infection which required 2 surgeries and a re-opening of the entire scar to be washed out. I was given a picc line for IV antibiotics every 8 hours, and an at home nurse for 6 weeks. I prayed I would get better. I felt hopeless. After the 6 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 2 more surgeries called ‘manipulation under anesthesia,’ to bend and crack the scar tissue in my knee which 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 Aug 2018-Oct 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 which 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. Oct 25th, 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.

Courtesy of Callie White

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.

Courtesy of Callie White

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 everyday. I love the strength which blossomed within me through my journey and I know I will never give up! I will continue to fight this lifelong battle and realized 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!”

Courtesy of Callie White

This story was submitted to Love What Matters by Callie White of San Francisco, CA. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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