The Big Epic

Connect with Nature - One Adventure at a Time

I am Unique!

We all know that I am quirky and artsy and nerdy, all at the same time. I’m happy to announce that medical science has now authenticated how unique I am. Really! I’m not joking! Let me explain…

Unique in my Family

First of all, did you know that I am the “Queen Bee” of my family? A few years ago, my newest daughter-in-law asked what we wanted to be called. I told her that I had ALWAYS wanted to be called the Queen, but for some odd reason, none of my kids had ever agreed to do so. From that moment on, she calls me QB. And gradually a few other younger friends have started doing the same. How many moms are acknowledged for being the Queen? That’s one evidence that I’m certainly unique.

queen bee, unique chocolate box

Next, we have a large family (7 kids, most now married, with 1 who has given us 3 grandchildren). I thrive on helping my kids pursue their individual interests. This was a major reason that we chose to homeschool most of our kids for most of their K-12 education. Perhaps that does not make me “unique,” but it definitely proves I’m unusual.

Medically Unique

Finally, we get to the medical reasons why I am quite unique. According to the latest data, in 2019, there were 1.7 million Americans diagnosed with cancer. Among the many possible types of cancers, I was diagnosed with Leiomyosarcoma (LMS). Sarcomas make up less than 1% of all cancers, which makes me part of the <17,000 who have this broad category of cancers. Among those sarcoma patients, my specific type of cancer is 10-20% of that category. Thus, I am part of the 1700-3400 individuals who are diagnosed with LMS each year. Genetic mutations are found in only 6% of those with LMS, which means I belong to a small group of 100-200 patients nationwide. (I also have two different types of DNA mutations which drops me to an even smaller group, but there are no percentages available for that.) So according to medical data, I am a unique cancer patient.

unique, woman wearing tiara
I am the Queen Bee of cancer and everything else!

Unique Treatment

The downside of having a rare cancer, is that most of the available treatments are only 40-50% effective in halting tumor growth. That is a discouraging number, especially when considering chemo, which has such awful side effects. I will likely have to try these different treatments eventually, but hopefully not for a long time.

The intriguing thing about being part of the < 100 people with DNA mutations in their LMS tumors is that there is a brand-new treatment drug which targets one specific mutation that I have. I am in a Phase 1 research study to see how effective this medicine is and to get an idea of what side effects it might cause. This is preliminary to future studies to eventually get FDA approval for this drug. And the best thing? So far, there are virtually no side effects. This is an 8-week study of which I am in the 3rd week of taking pills each morning and evening. At the end of this clinical trial (in 5 more weeks), I will have a CT scan to verify how effective the drug is for me—whether the tumors have grown, have slowed to stay the same as they were at the beginning of the study, or perhaps have even shrunk. If tumors have grown, I will have to try one of the less effective treatments mentioned above. However, if it is proven to be a good fit for me, I will be able to remain on this drug for the long term. Sometimes, there is great benefit to being UNIQUE!

Thanks for taking time to read this explanation of how I am “Unique” in the world! Now that I am an active cancer patient yet again, I decided to add a “health adventures” tab to my website. You can follow my current cancer journey in a couple of ways:

  • click HERE to see frequent mini-updates plus links to the pages below;
  • click HERE to see a compilation of all of the mini-updates archived in one place; and
  • click HERE to see photos and read blog stories about the ups and downs of this stressful journey plus posts from past health challenges.
  • Feel free to poke around the site and check out other Big Epic Adventures I have documented in the past—backpacking and other outdoor fun, becoming a certified Nature and Forest Guide, trip reports, and other daily activities.

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If you hate to miss the latest reports from my Cancer Journey, you can bookmark this site or you can scroll to the bottom of any page and sign up for email notification whenever I make a new post.

(THANK YOU for following with me on this cancer journey! I appreciate every comment, encouragement, prayer, good wishes, and other types of support. I can’t imagine doing this alone…)

2 Comments

  1. I’m so glad you aren’t having any side effects! I hope you and your family have a Happy Easter. Sending you lots of love.

  2. Jill, you are truly like no one I’ve ever met. You are amazing.

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