The trio (Zeb, Kristy, and I) were thrilled. My follow-ups were fast and faith-filled. A rescheduled flight, one-stop, then D.C. The Institute welcomes rare humanity.
Two scans, scores of blood draws, and a sticky I.V. Fasting and waiting, dreams of driving an R.V.
Two “Hales” were called we stood to take a look. Another “Hale” but a male? That’s one for the books!
Doctors and researchers from across the world, my tears of gratitude, when my story was heard.
My liver and pancreas look as good as they should! The nuances of this cancer can be misunderstood.
A few growing lymph nodes and bones need a scan. Two new mutations will be met with a plan.
A follow-up at home and a shift in the seasons. My heart bleeds for others As I ponder the reasons.
Maintenance helps symptoms, New meds or monthly shots? I don’t take this for granted, I'll give it all that I’ve got.
We're not promised tomorrow or a life without pain. Wisdom, growth, love, and RARE are life-altering to gain.
"Unlike me," Zeb said, life's not always black and white. But God made us all unique and precious in his sight."
K.L. Hale
Zeb in the waiting room! Zeb signed in! Zeb enjoying the night flight!Zeb loves his travel pack! Zeb loves the NIH/NCI campus!Bye-bye, Bethesda. A hopeful sign! Thank you, D.C. for the beautiful welcome.
The National Cancer Institute at the National Institutes of Health is in Bethesda, Maryland. As the nation’s leading federal agency for cancer research, NCI has 30 divisions, offices, and centers that work together to build, maintain, and enhance a cohesive and comprehensive cancer research agenda. Their work ranges from cutting-edge research on cancer causes, treatment, and prevention; to training the next generation of cancer researchers; to funding and supporting the nation’s vast network of scientists and cancer research institutions; to informing and educating the American public and the world about cancer. (cancer.gov). A heartfelt thank you to Dr. Jonathan Hernandez and Dr. Jaydira Del Rivero. Their expertise and research have and are extending and enriching lives–just like mine! When my mind starts questioning or thinking, “How did I (a middle-aged woman from Missouri) access help from THERE?” I smile and say, “Thank you, God,” for it’s surreal!
Keep the faith-have heart. ❣️🦓 Do you know how loved you are?
It was a sun-shiny day with low humidity, rare for this time of year–the trails called our names. Finn and I spoke with a Golden Doodle, a Miniature Schnauzer, and their kind owner. The man’s river t-shirt, hiking shoes, cane, hat, gait, and smile, gave me hints about his human condition and hobbies. My appearance, according to him, didn’t provide hints about my health, but my hobbies were evident (the hat and pigtails gave it away). He’s a retired orthopedic surgeon who loves walking his dogs, visiting foreign countries, and even more, his family and granddaughter who studies at MIT in Boston. We spoke of rare and unusual things like cancer, situations, and nature lovers in our area. Two days later Finley and I visited another nearby park. Most would call it remarkable and rare—unusual and strange-that we ran into the doctor, his two dogs, and his wife. What are the odds of meeting again, on a different day, time, and park? A family reunion the next day posed “out of the ordinary” situations and a rare love we all have for one another. I’m embracing this Jubilant July with the extraordinary it’s already delivered. Sometimes, things are just out of the ordinary.
Rare is everywhere. I’ve experienced rare things–people, places, and things. There are many photos to display the unusual.Even rarer than my photos are the feelings and emotions attached to them. Do things feel “out of the ordinary” to you? I mean, what is “ordinary” anyway (I’ve experienced MORE than an ordinary miracle)? My cancer is considered rare. But it’s not “out of the ordinary” to meet someone who is battling a disease. Being a twin is a bit out of the ordinary (and rare). What is rare and unusual to you? Your eye color (I learned hazel eyes are rare globally)? Your car? Culture? A collectible jewel or crystal? Your IQ? Temperament? What about kindness? Love? Religion? Beliefs? Behaviors? Ten years ago, in my world, kindness seemed more common. Ordinarily, I would see more smiling faces (or just faces, lol). Unlike some of the animals I learned about on a recent excursion, I don’t believe kindness and love have a chance at extinction, but hostility does seem more common. Allow me to share rare and exceptional stories that I hope will highlight the remarkable and extraordinary!
What’s black, white, and red all over? A zebra with a sunburn!
Each Wednesday my exceptional “herd” of friends with NET cancer meet via ZOOM. Why are we zebras? Each of us has this uncommon cancer; like unique “stripes”, we all have varying symptoms and treatments. The faces in the ZOOM squares have become my rare family (a huge Brady Bunch clan)! This uncommon and exceptional group is MORE than their rare disease. One professionally ice-skated for 14 years, one skydived recently, and another “zebra” and his wife captured (by a photo of course!) an out of the ordinary whale gathering on their return trip from Alaska. Other ZOOM “zebras” cherish their kids, grandkids, and even great-grandkids! One assembles model cars (his wife is a retired nurse), one composed a Christian radio program’s theme song, and another exceptional member creates costumes, masks, and designs (and her mom designs exterior places!). Giggling, I think of the rarity in our leader, a retired PA, who has a twin like me, and her husband is a composer/musician. One member swims marathons in the ocean and raised 4 kids, and another is the fun creative aunt, placing pics in photo books and organizing all our notes and information. Another zebra teaches music in New York and advocates for his mom. And another one is a physical therapist and health/wellness coach. One creates unique art and two are retired counselors! Several zebras are retired teachers~ and across the ocean is an outdoor, horse-loving/riding enthusiast! We’re moms, dads, sisters, brothers, aunts, uncles, friends, workers, and more! Aren’t we ALL zebras? EACH of you are UNIQUE and RARE!
A hero is no braver than an ordinary man, but he is brave five minutes longer.
Ralph Waldo Emerson
Rarely, do my twin and I spend an entire day together! On Monday I celebrated her birthday with a visit to the Wonders of Wildlife National Museum and Aquarium (I must dedicate an entire post to this place!). Rare and unique displays, animals, and experiences made our birthday a blast! Kristy always cheers me on when I want to do “rare” things like dive in a tank with sharks (very safe and easy–all in a cage with exceptional gear)! As wombmates many things for us are “out of the ordinary”. Our love and connection is rare. Are we like a small gang? Two peas in a pod? We share hearts–and noses, chins, and lips? Our shirts stated, “It’s a twin thing—you wouldn’t understand!” Being a twin is rare (rather than cite all the research, I’m sure you can Google it to see its rarity—be prepared to go down a rabbit hole of even more rarity!).
How about rare and radical love? It’s not the kind in the movies or books,…except for ONE book I love.
I’ve experienced radical love and forgiveness. “I forgive everything!” It might seem out of the ordinary to offer grace, love, and kindness. But I know an unusual and rare love. Complete healing isn’t necessary for me to accept it. Or to feel it. I choose it! How do you find this rare treasure? It’s already in you. Do you have a longing for a love that can’t be met in the ordinary? You’ll find God in that rare place in your soul. When you meet him there it’s a rarity that is priceless. It’s so out of the ordinary you’ll never replace it, sell it, trade it, or give it up!
Yet you, Lord, are our Father. We are the clay, you are the potter; we are all the work of your hand.Isaiah 64:8
Do you know how loved you are? Have faith 🤍
“The more you like yourself, the less you are like anyone else, which makes you unique.”
Walt Disney
“It may be hard for an egg to turn into a bird: it would be a jolly sight harder for it to learn to fly while remaining an egg. We are like eggs at present. And you cannot go on indefinitely being just an ordinary, decent egg. We must be hatched or go bad.”-C.S. Lewis
