There was a day when I thought I might have only 45 minutes to live. That day was April 27, 2012, exactly ten years ago today.
Ten years. When I was 8 years old, the 10 years between me and my 18th birthday seemed like an eternity. Now that I am 36, ten years feels significant but not forever. I suspect that if I make it to 46, these next ten years will seem even shorter than any decade I have experienced yet.
Ten years ago today was the closest brush with death that I have had. Unwillingly, I was forced to face my own mortality. The presumed invincibility and long term outlook of my 20’s ended abruptly that day.
When I was rushed into emergency surgery, I didn’t know what was wrong with me and neither did the doctors. We only knew that my intestines were obstructed by an unknown mass and if I were to live, it had to come out immediately. I was told I would likely wake up with a colostomy bag and asked to sign a form acknowledging death as a risk of the surgery. I was all alone for most of the 45 minutes I had.
When I woke up from surgery, I was colostomy bag free but faced with the prospect of a long recovery and the lingering mystery of the origin of the mass. Later that week I learned that it was a malignant neoplasm–cancer–the exact type still unknown. I was told it was either a sarcoma or a melanoma, not a carcinoma which is by far the most common type (breast cancer, colon cancer, prostate cancer, lung cancer).
My tumor was unusual and had to be sent to UCLA’s tumor board for analysis. I had my very first PET scan that week. Before receiving the results I worried that my future was now limited. The questions were innumerable.
Would I survive the summer? Christmas felt like a long shot. What would life look like with a massive vertical wound that would someday become a scar on my belly? Would anyone ever want to date me again? Would employers want to take a chance on a young girl who might die from cancer soon? If my time was limited, what should I focus on?
My long term goals no longer mattered like they once did. How could I live a fulfilling life, not knowing if these weeks were the end of my life? I had always been a long term planner, taking actions with future me in mind, nevermind the present. Robbed of the certainty of my future, I was forced to make a monumental mindset shift.
After nearly a week of uncertainty and wearing a wound vacuum, I visited my assigned oncologist. He told me that the PET scan revealed no evidence of disease. This is the best news possible for cancer survivors, but it was hard for me to understand just how wonderful that was. I was, after all, newly inducted into the world of cancer and I still didn’t even know what kind I had had.
Eventually they determined it was clear cell sarcoma of the gastrointestinal tract. A research study conducted between 2004-2017 revealed only 53 cases of this cancer worldwide.
The statistics for clear cell sarcoma are grim. If you google it like I did, you will be faced with the phrase ‘poor prognosis.’ Five year survival is 56%; ten year is 33% and twenty year is 10%.
But now that I am in the one-third who makes it to this 10 year milestone my hope for old age is reignited. Yes, I need to remain vigilant. Especially because having radioactive glucose injected into my veins (procedure for PET scans) multiple times at a young age increases the odds for developing other cancers. But, now that I’m in the 10 year club there should only be a 23% chance that I perish before age 46. Much better than the 90% chance I once faced.
So today I celebrate this incredible milestone by indulging in the here and now. I took the day off work and filled it with activities that bring me immediate joy, writing is one of them.
Ten years has taught me so much and I have been incredibly fortunate, perhaps even blessed, to have such a magnificent quality of life. That is not always the case with cancer. Even those who survive 5 years are often undergoing treatments and battling relapses during that time.
I’ll be making a series of videos over the next month highlighting 10 perspective shifts that I have made since surviving cancer. I love to write about developing a resilient mindset, and those strategies are directly influenced by what I’ve learned as a cancer survivor. So, if you’d like, follow along on my YouTube channel.
I’ll also be raising money for the Sarcoma Foundation of America through the next month in hopes that my story can inspire newly diagnosed sarcoma patients and we can raise money for more research on these rare cancers that account for less than 1% of all cancers and mainly impact young adults. Check out my page on Raise Your Way to donate directly to my 10 year cancer free fund. My goal is to get 100 people to donate just $10. Of course, if you can donate more you are welcome to but $10 is all I ask. Thank you, everyone. Here’s to 10 more years!
