Pushing Through the Pain

September 9, 2026by Debra

September 9, 2026

It's been an agonizing two weeks since we found out Tony's jaw has broken.

Nine years ago, Mr. Charming's tongue was removed due to Squamous Cell Carcinoma. The radiation treatments that followed, on top of the radiation he received in January 2008 to melt away a tumor caused by Indolent Follicular Lymphoma, decimated the bone - a condition called osteoradionecrosis. Gradually, teeth fell out or were surgically removed. Tissue receded, exposing the bone inside his jaw. Shards of dead bone worked their way out through the skin. Finally, the dead bone weakened, and structurally collapsed.

Side view of Tony's skull imaging
Side view of Tony's head and jaw

Even though he can't chew or open his mouth very wide, Tony has been doing remarkably well. He eats a lot of creamed soups and soft foods that can be chopped finely enough to swallow. Thank goodness for readily available protein shakes and superfood powders!

Speaking can be painful, but that didn't stop Superman from bearing his testimony in Sacrament Meeting on Fast Sunday. I think most of the audience had no idea what they were witnessing.

For the most part, alternating Ibuprofin and Acetaminophen helps to manage the pain that Tony describes as a constant dull pain with occasional sharp pain, and a burning sensation inside the mouth.

The skin covering his jaw is very sensitive and hurts when touched, which is strange after having very little feeling in that area for the past nine years. Clear fluid seeps out occasionally.

Tony finished his second round of antibiotics yesterday. It's been hard on his gut biome.

On Friday, September 11, we will travel to the Huntsman Cancer Institute in SLC for scans of Tony's legs and neck area and meet with Dr. Monroe, (the surgeon who removed his tongue) for assessment, scheduling, and instructions.

The scans of the legs will help the surgeons determine what bone to harvest to fashion a new mandible. The fibula is most commonly used for this procedure.

In 2017, when Tony was having his tongue removed, one of his coworkers was having this surgery to remove cancer. It's a major microvascular procedure, requiring multiple surgical teams working 12 hours, ICU, a week in the hospital, airway management, pain control, and nutritional support via a feeding tube. Recovery is a lengthy process.

We've been looking at priorities that we can reasonably accomplish before Tony has surgery, knowing he won't be up to doing much for months. (Geez, we're still playing catch up after Tony's battle with Diffuse Large B-Cell Lymphoma last year and helping William move everything twice after his divorce. 🤦🏼‍♀️) Our storm door has needed some work for quite a while, so Tony built a new frame and installed a screen so we can enjoy the airflow without the dogs getting out.

Tony working on the new screen door frame
Tony in a Sunday suit inspecting the new screen door
Dog enjoying the view out the new screen door

Meanwhile, Emily continues preparing. She will be speaking in Sacrament Meeting on September 20th as she prepares for her missionary service in Omaha, Nebraska.

Debra

Help Tony, Help Yourself

If Tony's story has touched you and you'd like to help, here's a way to do both at once. Let's Goal is a simple tool that helps you reach your own goals, and using it through the link below supports Tony and our family during the road ahead. Thank you for walking this journey with us.

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