You see it all around you: pink ribbons, pink hats, pink T-shirts. You can buy pink bracelets, pink bookmarks and pink watches. When I was diagnosed with stage IV thymoma in 2013, I wondered: what color is my cancer?
Thymoma is a rare cancer of the thymus. Approximately 500 Americans are diagnosed with thymoma each year. It had dropped malignant cells onto my heart and diaphragm, requiring two major surgeries and chemotherapy.
I quickly discovered that having a rare cancer can feel very isolating. There isn't much research, and they're certainly wasn't a support group in my hometown. In fact, I was the only person in the area to ever receive a thymoma diagnosis.
Initially, it was frustrating to be so alone. But then I realized that the lack of research and information meant I would get to write my own statistics. I get to determine my own prognosis. Somehow, that has been very empowering. Having a rare cancer can feel overwhelming, but these things have made my journey easier.
Here are my tips for coping with a rare cancer.
Find the right medical team for your rare cancer
My local doctors are wonderful, they're not best equipped to address my needs. It is important to have experts in the field develop my treatment plan. I am so thankful for MD Anderson and the physicians in the thoracic department. While it can be a challenge to travel back and forth to Houston, it's been life-changing and comforting to have such knowledgeable doctors.
Make peace with ambiguity
Each cancer treatment plan is highly individualized and subject to change at any moment. I have had to learn to make peace with ambiguity. There is not an "All You Ever Need to Know about Thymoma" book.
All I can do is live each day to the fullest and wait for the next step to be revealed. Being frustrated for answers that may not exist only steals my strength for the fight.
While I have longed for, and recently found, a friend who shares my experiences, I have found it is more important to just connect with people in general. People don't need to have the same scars to show empathy, to encourage, to pray and to walk with me.
The love I have felt from others during this trial has blessed me in immeasurable ways.
Each day the medical community is learning something new that may eradicate cancer. There are new treatments and new protocols, and I believe there are still miracles.
Losing hope can cause people to give up just before the breakthrough. My faith, my family and my friends help me remain hopeful for good things to come.
So, what color is my cancer? I am thinking it involves some neon and zebra print. What is my prognosis? 100% hopeful. I may be rare, but I am not alone.