“The GIST of the story” - The Background

“Heart” original artwork by LeonaGD 2024

Journal/Blog Entry: Sunday, July 12, 2026, by LeonaGD

“The GIST of the story” - The Background

In early 2024 I started experiencing a sudden onset of what I thought was acid reflux. In my journey to figure out what was going on I made many major lifestyle changes (losing weight, changing my diet, changing my clothing, exercise, fragrance use, etc., etc., etc.) and also discovered that I had what is called “no burp syndrome” (the medical term is retrograde cricopharyngeal dysfunction, aka R‑CPD) which is essentially where the cricoid muscle in the esophagus won’t open when air is trying to escape out of the esophagus therefore preventing the ability to burp which then creates terrible bloating, flatulence, fear of throwing up, and other unpleasant gastrointestinal issues. In discovering the no-burp issue, I worked hard to avoid having to have the recommended procedure (Botox shot to the cricoid muscle to paralyze it) and ended up training myself to burp using multiple physical techniques as well as hypnotherapy (thank you Brit Lesnett, amazing therapist/hypnotherapist). I was finally feeling like it had resolved, yet there was still a nagging feeling that something was not right. So, on April 27, 2026, I went to Redwood City and paid out of pocket for a private full-body MRI scan at Prenuvo. I received the report back from Prenuvo on June 1 and it had a big red “urgent” notice saying that the scan identified a “probable GIST (Gastrointestinal Stromal Tumor) at approx. 5cm x 5cm x 5cm size on the outer curvature of the stomach.” And, that the size, 5cm, indicated a flag for malignancy. Well, crap.

I am so thankful that we have the resources for me to have gotten the full-body MRI. I am so thankful that I listened to my body and kept pursuing answers. I am so thankful for all the work on my health for the last two years to get me ready for this unexpected news. I am so thankful for Google AI and Chat GPT because I burned that shit up with my research on GISTS.

Just before getting the MRI I had started going to a new chiropractor (who is also a line dancing friend), Heidi Law, she is awesome! When I told her about getting the MRI, she said she’d be willing to help me read it to understand the results. I had gone over the report with the Prenuvo techs and already saw the “urgent” notes, so when I sent it on to Heidi, I knew she would see some not great news in the report.

Heidi’s response was amazing. She said, hey, there are lots of good things going on in this report, but I am really sorry about this one item, the GIST. And, then, with little fanfare or drama, she just laid it out that this discovery is serious and that it is crucial to have a GIST specialist to handle it. She immediately did research (which absolutely confirmed and was in alignment with what I had found): it is a genetic anomaly tumor that is not my fault; it is very fragile and needs proper and prompt removal; is treated with specific targeted drugs (if needed); can be a silent slow grower with low symptoms until it decides to rupture; and at 5cm is definitely marked for malignancy, but hopefully is not metastasizing. But then she went full throttle and called upon her colleagues and friends and identified a GIST specialist at Oakland Kaiser that I could request by name to take my case. WOW!

I am so grateful for Heidi and her medical expertise and her wisdom and tenacity. Not only did she have my back in her chiropractic office, but she also literally had my back as my medical advocate.

By the afternoon of June 4, 2026, I was in my general practitioner’s office at Kaiser making the referral request for the Oakland Kaiser GIST Oncology Specialist.

It took me a week with multiple phone calls, appointments, several refusals for unneeded tests and biopsies, and a Kaiser approved CT Scan, to get through the system to finally get the referral over to Oakland. Phew. And, the Kaiser CT confirmed the GIST.

Note: Once this tumor is out of me (in a special bag so it doesn’t rupture or scrape when removed from my tummy), it will go to the Pathology lab, and it is possible that the tumor is something else. But no matter what it is, it is big and it needs to come out. Once the pathology is done, the oncologist will be able to make an assessment as to risk of recurrence and what, if any, medication or treatment needs to be done for recurrence prevention.

The oncologist appointment went well, and I was immediately referred to a gastrointestinal oncology surgeon (also Oakland Kaiser).

The surgeon had a clear plan when we spoke on the phone for our initial appointment: a laparoscopic sleeve gastrectomy with removal of the tumor in a special specimen bag to prevent rupture or scraping. Goal of removing the whole tumor, plus clean margins, yet leaving me with 90% to 95% of my stomach intact (using an endoscopic stapler with titanium staples to seal my stomach). Because this tumor is on the outer curvature and is away from the esophageal junction and from the small intestine junction, it is possible that my stomach can have full function after surgery and healing. But I have to be ready for anything, because if the surgeon gets in there and sees a mess, choices will need to be made on my behalf to do what is right for me. My fingers are crossed for best, best, best, best outcome.

Ok, surgeon appointment done, that was June 23.

On June 26 I got the call with my surgery date: July 28, 2026. Yay!

I looked at my calendar and started making plans, I figured that I had all the way up to July 24 to fit in all I needed to do and to dance, dance, dance, and hike, hike, hike.

Universe had other plans.

July 1st I had a toothache.

July 2nd my dentist confirmed a fractured upper left molar! And, unsalvageable! (and, with and infection!)

July 7th I was in the dentist chair, Valium, Novocain, and nitrous for a molar extraction, bone graft, and insertion of a pin/screw for an eventual implant. My personal diary on this particular day reads: “What the #@$&@%!”

When we realized it was a fracture and an infection we immediately contacted my Kaiser surgeon to make sure it would be okay to get the dental work done and to see if it would make us change my July 28 surgery date, Kaiser surgeon gave the go ahead.

Bam! As of that moment everything came to a screeching halt.

Amid all of this, I, as an introvert that appears to be an extrovert, had been navigating how I wanted to share the GIST news with my family and community. I needed time to take it in and process it before I shared it out in the world. And, then the dental crud happened too, sheesh, too much happening!

When I saw the urgent GIST notice, of course I told Jeff immediately. Then I told Heidi, as my chiropractor and medical advocate (and, as I mentioned, she is also a dance friend, so her client confidentiality is amazing). Then I told my doctors at Kaiser. Then I told my therapist, Brit, who was open to having an appointment where Heidi could come with me and then another appointment where Jeff could come with me. Both of those sessions were incredibly powerful.

But, I was still in shock and disbelief mode and just wasn’t ready to share. It took me until just after the oncology appt to be ready to say it out loud (then it would be really real). Also, I have some dear close friends and family that are recently having their own health issues and life journeys, and I just didn’t want to put my stuff out there on top of theirs.

I think it surprises people that I am such an inward person because of the energy I am able to put out when I need/want to. So, as you read this, just know that I needed to conserve my energy inward as I navigated this, and that I had to figure out how to share in a way that worked for me. It wasn’t that I was keeping a secret, just that I was keeping it private until I could process it in a way that made energetic sense for me.

So, from having “sudden onset acid reflux” in 2024, to making lifestyle changes, learning how to burp, and then thinking something’s still not right and getting the MRI, finding out on June 1, 2026, that I have a cancerous tumor growing on the outside of my stomach, to getting a surgery date on the calendar by June 26, doing tons of research and prep, ending up having to have dental surgery (and heal from it) just three weeks before my big surgery scheduled for July 28, all I have to say is wow. Just wow.

Special Note: Jeff Davidson is AWESOME!!! (I know you all already know that) But, wow, when the shit goes down and the alarm goes off, he is in the driver’s seat and takes care of business. He has been my hero since I met him in the beginning (May of 1986 - OMG 40 years!), but he has stepped up even more in this trying and surprising time of my health issues and has really been there for me. Thank you, my love.

Life and the universe are so interesting.

I am really grateful to be alive and writing this right now. And I hope that by catching this issue now and having the thing removed will let me heal and live a full and healthy and long life, with LOTS of opportunities for both inward and outward sharing and LOTS of opportunities for dancing, hiking, and spending time with all of you.

You all have been incredible to me. So patient. So kind. So generous. So full of humor, heart, and sincerity. I feel seen, heard, and completely cared for by each and every one of you. I hope I have many more years on the planet to return the love you all have shown me.

Thank you.

And, thank you for reading this. I appreciate you soooooo much.

Much love and many blessings.

More to come as it all unfolds.

Love, Leona

“Heard, Helped, Hugged” original artwork by LeonaGD 2024