• Terri Tomoff

A Back-in-The Focus Fight UPDATE

Updated: Apr 11

What I am about to share started at the beginning of January 2022. Ryan came to me two days into the new year asking me to check on a red spot on his tongue. He noticed something odd that was a “little” painful. And it had been for a week or two. In seconds my hackles were as high as the Empire State Building. My hands burst into a sweat as I used my iPhone flashlight to shine into his mouth. I didn’t see anything alarming, but I am not a doctor. The good thing, though, is I do know how to advocate for care.


Within days, I had a few appointments on the books. Ryan did not want me to blog about any of it until today and preferred that if I did blog, he suggested that I write it in a timeline sort of way. More color commentary will come later.


1/2/2022 - Ryan had me look into his mouth for the first time when he noticed a sore on his tongue.


1/5/2022 - A pre-scheduled appointment with Dr. Shad couldn’t have come at a better time. When Dr. Shad peered into Ryan’s mouth, she did see a redness between the flap and the native tongue, though she knew he had an appointment scheduled with his Maxillofacial Team the next day for the experts to examine.


1/6/2022 - Arrived at University of Maryland and seen by Dr. Wilken, an associate of Dr. Ord (Dr. Ord is Ryan’s primary doc/surgeon but was out of the country for this appointment).

Ryan was given two choices, a topical steroid to use for about (2) weeks or a biopsy. Ryan insisted on the biopsy - he did not want to wait weeks to find out that he would still need a biopsy if the steroid did not work. I was proud of his self-advocacy because the biopsy was done pronto in the surgical suite. The wait was on…


1/13/2022 - Results were back. Dr. Ord was back in town a saw Ryan. The biopsy report indicated precancerous in SITU in several places on his tongue. Ryan needed surgery to remove the offending lesion(s) and scheduled.


2/2/2022 - Pre-op appointments began with a complete physical and a PCR covid test 72 hours prior to surgery.


2/7/2022 - Afternoon Surgery at the University of Maryland under Dr. Ord. Ryan’s initial OR time was slated for 1.5 hours, though he was in there almost 4 hours due to the removal of sections and frozen sections or margins tested and reviewed by pathology. There were five in total.


2/17/2022 - Follow-up appointment with Dr. Ord to review the final pathology report. The one section out of the five indicated “high-grade dysplasia” and was deemed negative, and the last frozen section was CLEAR. All the other sections were negative for cancer. When Dr. Ord first peered into Ryan’s mouth to examine his tongue and check on the swelling, Dr. Ord gasped. I jumped out of my chair to see what he was looking at and asked, “What’s Wrong?” Mama Bear’s hackles went straight up again until Dr. Ord stated that he couldn’t believe how much healing occurred in the last (9) days. He was not expecting it. Hence the big gasp.


Can you hear our collective sigh of relief? This whole world of late effects from all Ryan’s treatment through the past 25 years never gets easier for us; it’s instead the opposite. But we NEVER give up on hope, though I must admit, I teetered on this for the last two months.


We treasure today. We hope for better tomorrows.


Ryan still has a few more weeks of healing with a close watch on his tongue for the foreseeable future. We will go forth being cautiously optimistic.


One more thing: Today, I celebrate (1) year post-surgery (2/17/2021) for Uterine Cancer that I was diagnosed with in January of 2021. So far, all my follow-up appointments have been good, and I’m looking toward a long and healthy life ahead.


Thank you for reading along! I know today was a bit longer post than usual.


bSoleille!


Terri



I did not let that fist pump go without a fist pump to Ryan as he headed toward the OR. Dr. Ord is swiping his badge to get back there with his patient.



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