There are paths in life we consciously choose to walk.Trails forced upon us that we never asked to trek. For many facing neuroendocrine cancer, the initial journey is defined not just by a disease, but by hesitation: the choice to endure lingering symptoms to silence, to normalize the exhaustion, or to dismiss the subtle warning signs because stepping onto the road of diagnosis feels too daunting! It’s not about ignoring reality. But about the sheer exhaustion of trying to make the unknown “heard”. Years of symptoms and questions. Thriving with this demands navigating uncertainty, the medical mazes, and the waiting rooms. Since my diagnosis, this journey continues asking me to step forward in faith-to look the unknown in the eye while praying with hope for stability. Thank you, God, for being my strength and steady ground!
Have you heard of NET, yet?🦓
The Diagnostic Challenge-Over 90% of all Neuroendocrine Tumor (NET) patients are initially misdiagnosed and treated for the wrong disease (such as IBS or asthma), often leading to significant delays in getting answers.
Initiatives by INCA and organizations like NCF emphasize early detection and awareness with campaigns centered around recognizing NET behind common, lingering symptoms (like flushing, chronic fatigue, abdominal pain, or wheezing).
NET Cancer Day unites patients, caregivers, and advocates worldwide using the zebra symbol to push for better research, specialized treatments, and the core message that NETs are not rare—they are frequently dismissed, underdiagnosed, and forgotten.
It’s no coincidence that I have my Dotatate PET scan TODAY. Last week, after my “Godsmacked” experience of wanting a “quick fix” NOW for energy, fatigue,…and headaches, I’m expecting reassuring news of continued stability since March and the last 3 PRRT treatments. My bone marrow might be slow to recover, but my Spirit is healed. When my energy is low, my faith is HIGH. My fellow zebra friends and I often discuss “scanxiety”. The frequent scans, blood draws, appointments–it’s a marathon; not a sprint! That’s life for all of us, dear friends. Please know how GRATEFUL I am for your continued friendship, prayers, and partnership. For reading about my marathon and cheering me on in the stands. Do you know how much it means to me? DO YOU REALLY KNOW how LOVED YOU ARE?
THANK YOU’S~
To my sons and daughter-in-love’s-Jarrod & Brooke, Jay & Cierra, and my precious grandkids-Asher, Ainsley, & Whitley-I love you all to infinity and beyond. Your love and support, even with distance, propels me! It motivates me to continue walking in resilience and love. To my precious and amazing parents, sisters, brother-in-law, niece, nephew, and host of MANY family members–your love and support continue to lift me. To my immediate friends–your hands and feet that help me. I couldn’t walk this path without all of you. I LOVE YOU ALL!
I’d like to also thank my amazing team of doctors here in the 417-land. Dr. Lobins, Nurse Kayla and the crew, Dr. Woodall, the entire staff at the Hulston Cancer Center infusion center (their leader is phenominal, too!), Dr. Jaydera Del Rivero for her exhausting and continued expertise, medical care, and teaching, Dr. Hernandez, my surgeon from the NIH/NCI and his team. And now to my newest NET specialty doctor–Dr. MoSalem at St. Luke’s in Kansas City. Again, it was NO COINCIDENCE that Dr. MoSalem opened up a clinic specializing in NET in the Missouri region! I’m so thankful for he and his nurse, Abbi! After my scan today, I will meet with Dr. Lobins and Dr. MoSalem to discuss results and continue monthly injections (and infusions as needed) to keep this cancer “at bay”.
To anyone battling NET cancer, ANY cancer, or disease– we are MORE than the disease, the diagnosis (or misdiagnoses) and more than the waiting rooms. I know the architect of my HOPE and TRUTH. Our Creator, King, Redeemer, and Friend! Our Savior! I pray you DO, too!
Keep the faith. Don’t lose hope, dear friends. 💚
“She had heard the reports about Jesus and came up behind him in the crowd and touched his garment. For she said, “If I touch even his garments, I will be made well.” And immediately the flow of blood dried up, and she felt her body that she was healed of her disease. And Jesus, perceiving in himself that power had gone out from him, immediately turned about in the crowd and said, “Who touched my garments?” And his disciples said to him, “You see the crowd pressing around you and yet you say, ‘Who touched me?'” And he looked around to see who had done it. But the woman, knowing what had happend to her, came in fear and trembling and fell down before him and told him the whole truth. And he said to her, “Daughter, your faith has made you well; go in peace, and be healed of your disease.” Mark 5: 27-34
I want to dedicate today’s NET Cancer post to Lisa Yen, wife of the late and beloved Tom Bajoras. Tom’s legacy lives on through Lisa-and his music. She’s dedicated many years to the neuroendocrine foundation and its cause. Through her loss and love for Tom, she will continue to advocate and lead. We have lost so many amazing friends in our organization. Many had personal and positive impacts on me, just like Tom and Lisa. Thank you to Heather, our Director of Community Engagement, for her tireless advocacy. She lost her precious mother to NET and also continues to lead our group! Thank you, Mary, Brent, and all of our mentors and members. I love you all!
Support NET cancer awareness with items from our Finley River Collection—a portion of proceeds helps spread awareness and support fellow zebra warriors!
☕ Finley River NET Cancer Awareness Mug – Start your morning with a reminder of hope, strength, and resilience.
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I imagine that just trying to get the right diagnosis must be one of the most frustrating things about NET. But when you get the diagnosis, I’ll bet there are mixed feelings, of both relief (that now you know what the problem is) along with the variety of negative feelings that go with knowing you have a serious illness. Maybe that’s another good reason to have a zebra symbolize this cancer.
Happy Tuesday, Tippy. You get it. It’s definitely a mixed feeling situation. The relief to know and also, the marathon situation. What a good thought on another reason for the zebra, my friend.
The inconsistency of the “strong” days versus the weak–I worked for HOURS on the computer and pay for it? Yet, it’s such a win to be able to do so!
Discernment, wisdom,…making decisions alone. Even as simple as “should I drive that far TODAY?” I’m blessed, Tippy. My walk with Christ allows me to clear out some of the clutter and grab the peace only He can give. Yet, I’m human. So there are days I struggle with even making a decision to leave my house. The constant communication with insurance, appointments, health bills….I lay it all out. Surrender it in prayer, but do my part the best I can. And I’m living.
I don’t take one day for granted. But the bigger picture …much bigger…just having a roof over my head, a bed in which to sleep, a car to get me to the appointments and scans. A caring family and support team I could call. I’m honest about the weight of the load; but the perspective and view through the lens of the Lord makes it much clearer. We’re all living stage 4 eh? No one guaranteed tomorrow–I guess it’s just been handed to me in a clearer way! So I’m thankful!
Thank you for being such a great friend over these years. You’ve made me giggle when I could’ve been feeling more sorry for myself! You, C, and the crew have made for many sunny and punny days that keep me motivated! THANK YOU!
Wow. I must give you credit for being scrappy and hanging in there, even when everything can seem overwhelming. No doubt your faith helps you and guides you through this mess. I’m glad Carolyn and all your other blogging buddies are able to help out a little, even if it’s just to give you a laugh now and then.
Thank you so much, Tippy!!
Thank you for sharing your NET cancer journey with the world, Karla. Since you were diagnosed I have met 2 other people who are just beginning to understand their NET diagnosis. You are an amazing example of just what can happen when we release “control” to God and instead LIVE with trust in Him. Even as a lay minister and lifelong Christian, I struggle to do this. May God continue to make your life beautiful and fill it with love.
Erika, thank you, dear friend. I’ll keep giving God all the glory! Please feel free to give those you know with NET my information so I can help provide resources and support, too. I’m praying for them now!
IT’s not easy releasing control. I smile when I think of all the times life’s situations have been like a rug being pulled out from under me. Yet, it was during those times, that I know that God was getting “my attention”! When I began releasing it ALL to him. Not worrying about the outcome. Walking away from a career or leaving anything that didn’t honor him, it was no longer about human validation—but what our Savior desired and wanted for me. And it was always what it should’ve been all along. I know you understand this! Allowing his indwelling Spirit to live fully is a freedom that is like no other. It doesn’t promise life will be easy–but He promises to never leave nor forsake us. And even more, the ways in which it connects us together, as Christ followers, leading and walking with our new hearts in Him. It’s such a joy to walk/hike alongside you. You have amazed me through all your situations—and your summits and “stalls”. The pain and slow progress to the celebrations of singing and preaching. I’m happy we’re on this together, sweet Erika. Thank you for being here–even though the miles separate us, I feel your love and spirit. May God continue healing us both, giving us the tools necessary as we lay it ALL down to him. I love you, precious sister.
Karla I’m praying for good results on your scan!! Here on WP there are so many who love you and pray for you!!! 🙏🏻🙏🏻💗💗🙏🏻🙏🏻 And Mochi sends her love as well!!🐾
THank you, precious Val! I FEEL the love and prayers from everyone. I hope you all feel mine, too! Finn and I send our love to you and Mochi! ❤️❤️🐾🥰🙏🏻🙏🏻
Hi Karla, I’ve been very intermittent on my blog the last year but think of you often. You have such a beautiful character. This may not be a path you would have chosen but you walk it so well, you’re an inspiration and beacon of hope for others who are ill, sending you love and hugs X
Kate, my heart is so happy “seeing” you. You’re someone I think of when I reflect on this writing journey-the very beginning and many of my life experiences since that day.
Thank you for your beautiful and kind words–your support, friendship, and love. They’ve lifted me when you probably don’t even know it. Please know, that although we don’t “see” one another, I hold you in my heart. Love and hugs, dear friend. 🫶🏻🥰❤️🙏🏻
Your words are so full of Karla that reading them really does make me feel I’m seeing you. Have a beautiful day ✨💕
Karla, if one has not experienced it, they cannot understand it. They cannot understand what it means to have this diagnosis, to run through the whole process with all its ups and downs. They cannot imagine what it means for family and friends. They cannot imagine how fragile a lot of things must have become. I have the deepest respect for everyone facing this all, as a patient or a relative/friend. You are going through this with so much love, which might have even grown through this all. I wish from my heart that you only receive results that prove your healing, my dear friend 💖
Erika, your words always come straight from your sweet heart and soul. They are impactful. And I needed to read them just at this moment, my friend.
It’s a blessing to walk out this journey with amazing humans such as you. Your friendship and support mean so much. Thank you, dear friend. I’m sending love and prayers for you and yours, too. ❤️❤️🙏🏻🫶🏻
the road is long, Karla, and you are still on it , ‘in the pilgrim way’ but the moment will come when you will touch his garment and you will be healed; praying, praying ,,,,
Amen, John. Thank you, dear friend. You understand!
Karla, praying for a good report on your scan. You walk this journey with faith looking toward our Heavenly Father who is our Creator. You amaze me my friend that you walk this path with courage and loving every day with wonder and praise!
You are always in my prayers! Love you so much 🙏🏻❤️🙏🏻
You are precious, Pam. Thank you. It took some energy from me–a bit of human “deflation”. BUT FOR CHRIST!
I feel the prayers–I don’t know what I’d do without them. I love you so much! ❤️🫶🏻🙏🏻❤️
This is beautiful, Karla. I hope your report is excellent. Love to you and Finn from me, Bear and Teddy. 🐩🐻❄️🧸❤️
Thank you, dear MAK. Finn and I love you 3 so very much! 🐾🐾🫶🏻❤️❤️🦓
🐩❤️ We think you are both brave and good.
You are always in my prayers, dear friend, but I must confess I haven’t prayed for others with NET. Doing so now. 🧡
Thank you, dear friend. You’re a blessing to all of us, Mitch! I pray for you, too. 🙏🏻❤️
Stay strong… fight the good fight… Life is for living!
Amen, Dwight! Thank you, dear friend!
Yes, it is a marathon, and you handle it SO well. Always. Karla, you’re always thanking others, but do you realize how much you do for others? Your faith, attitude, hope, and positivity is both infectious and a gift. So here’s a big THANK YOU to you!