Tony's Challenge

Day 6… (Five days post surgery). Today our Rock Star took over the terrace. He did some stairs and enjoyed the sunshine.

Terrace Stairs at the Huntsman Cancer Institute, Salt Lake City, UT

✅ The trach tube is gone! The opening is covered with a piece of gauze and a little button adhesive guides his finger to the spot to push on when he talks. It will seal up on its own over the next few days.

Last night the mucous was much easier to manage than previous nights. The nurse worked with us on the formula feedings and he finished them by 8 pm. He woke up hungry. 👍 We will probably be managing the administration of formula and fluids by the end of the day since the PEG is going to be part of our lives for a while.

Day 5… Our view of Salt Lake City from the front of the hospital.

The trach was capped first thing today so Tony is now breathing through his nose and mouth. The trach could be completely removed as early as tomorrow.

Tony wouldn’t wait for me to change, so I walked with him in my pajamas. Ha ha!
He did three laps around the ward. I stopped to snap the pic and had to double my pace to catch up!

Laundry day for me. The Huntsman Cancer Institute has excellent amenities for family members. Each room has a couch that converts into a reasonably comfortable twin bed. The laundry area is adjacent to two family bathrooms where we can shower and freshen up.

Day 4. Completely unplugged and determined for his walk this morning. He did two laps around the ward. 👏🏻👏🏻👏🏻

Tony had a rough time last evening. After four cans of nutrition his stomach got angry and he had acid reflux and nausea. Stopping nutrition is not an option, so it had to be controlled with meds and going back to a slower, continuous feeding to get the other four cans administered within the time goal. This is not an unusual occurrence, but still uncomfortable and frustrating.

Day 3 and motoring right along!

Today they will start bolus feeding – giving the nutrition in larger doses at a time through the feeding tube like we eat most meals.

It has been one heck of a ride to get this far, but Tony shared with me yesterday how grateful he is to be rid of the excruciating pain that the tumor was causing.  The tumor had progressed to the point that speaking was compromised, eating really hurt and it was difficult to sleep. He powered through it and was grateful for pain meds that took the edge off.

The speech therapist came by and guided Tony through some simple exercises, encouraging him to begin moving the flap around in his mouth. (I was out of the room when she came by yesterday.)

I am amazed that Tony already has some ability to move the new tongue around. 😛 He told us that he can feel tingles! Gives me great hope that once healing is complete that he will be able to speak in a way that will be generally understood. 🙏

Tony definitely woke up with his sassy pants on today. This morning he did a lap around the ward (over 500 feet) and impressed the heck out of the physical therapist. Ha ha

This afternoon he walked around the ward unassisted with only a slight limp due to the surgery on his left thigh and the occupational therapist says her work here is done for a couple of days. Ha ha

He watched the movie “Bucket List” to help pass the time.

Our nurse today has been Dewey and he looks and sounds remarkably like Hugh Jackman. I’ve been giving “Wolverine” a hard time all day. Ha ha

Orders were given to move us out of ICU as soon as a room opened up and by evening we had made it out of the ICU!  This is the view to the southeast from our room on the 5th floor. 

Day 2 and the view outside our room at the ICU with the sun still rising. I slipped out to take a shower at 6 am and just missed the resident doctors doing their rounds. It is probably a good thing, as they worked Tony over suctioning junk out of the trach tube. It was hard to return to the room and find him shaking.

Everything still looks really good with the free flap. The surgeon that put in the peg feeding tube came on rounds and cleared him to begin receiving nutrition which should help the healing process. The goal today is to get him out of bed and sitting up in a chair. If he is doing well, they may even have him go for a walk this evening.

Still hamming it up. Oh how I love this man of mine and his ability to make the most of even the bumpiest of rides.

This will be an all-day 12-hour event. The OR nurse will call me every two hours with an update.

The first surgeon will put a feeding tube port directly into his stomach through the abdominal wall so that he will be able to get the nutrition he needs over the next couple of months. A tracheostomy will allow him to breathe and the goal is to be able to remove it before he leaves the hospital.

Two surgical teams will work together simultaneously to remove the tumorous tongue (glossectomy) and construct a free flap from a portion of his thigh muscle. They will also do a neck dissection to remove some of the lymph nodes in his neck. (Experience has shown that leaving the lymph nodes results in a 50% chance of recurrence in that area.)

We are so blessed to have access to these incredible teams of talented surgeons. Tony has also agreed to assist the research department by participating in a study designed to find better ways to prevent, detect and treat cancer.

If you have been following our story, you may recall that one of the CT scans showed a lesion on his liver. The follow-up MRI revealed that it is benign. 👍

Keep those prayers coming!

First Update: 11:30 am…

Nurse in surgery just called. Everything is going well. Tony’s vitals are all good. Dr. Monroe is working away at the dissection.

Second Update: 1:00 pm…

Dr. Monroe just tracked me down at the Bistro. (Hey, a girl needs to eat a salad.) Everything went smoothly and they are running ahead of schedule. There was nothing abnormal or unusual about the lymph nodes that were removed. Waiting on pathology to give the all clear on margins and reconstruction will begin.

Third Update: 1:52 pm…

Margins were clear of any tumor and reconstruction has begun. Tony is doing well.

Fourth Update: 3:30 pm…

Nurse shift change. John called to introduce himself and let us know the reconstruction is still under way and vitals are good.

Fifth Update: 5:50 pm…

The reconstructive surgeon is working under the microscope now. The muscle tissue has been removed from the thigh and placed in the mouth. The microscope guides the surgeon in matching up the veins to provide the flap with a blood supply. We are still looking at another 3 to 4 hours before Tony will be in his room in the ICU.

This is the board I’ve been staring at all day. Each patient is assigned a number and is color-coded with where they are from entering the facility to in recovery. The board was full earlier today and now it is nearly empty. We have finally changed from pink to blue. Progress!

Sixth Update: 6:54 pm…

Another ENT surgeon came on staff and is helping Dr. Bruchmann close, so things are moving along. We are on the home stretch of the surgery, folks! I’m also the only person left in the waiting area. (Tony’s mom Helen Palmer and sister Debbie Reed just left.)

Seventh Update: 7:58 pm…

Tony is out of the operating room and going through post-op procedures. Dr. Bruchmann came and visited with me and said the surgery went as expected and he feels really good about the work he was able to do today. He emphasized that this is a risky surgery and complications usually happen within the first two days. Tony is young and healthy, so he expects him to do well. The flap has tiny Dopplers embedded in it and the flow of blood sounds excellent. The anesthesiologist just came out and said Tony is awake but groggy and did great today. 👍

Eighth Update: 9:14 pm…

I’ve been trying to mentally prepare for the moment I would see Tony post-surgery for weeks. Still so hard to see him like this. He is now settled into his room in the ICU.

May 11, 2017

Pace’s Dairy Ann… a favorite establishment from his teenage years for a “Rainbow” (cherry Icee with soft serve ice cream) and a Pastrami sandwich.

No more taste buds on the tongue after surgery, so he’s trying to make the most of the time he has left in spite of the difficulty and pain he endures to get it down.

We met with two surgeons, some of their support staff, a speech therapist and a social worker. The magnitude of what is happening is beginning to sink in and it’s dang scary.

How is he still smiling?
#imarriedsuperman

May 22, 2017

Huh? We are supposed to be packing to go to Salt Lake for surgery and he’s like…

Last Minute Project

That red barn in the background is our chicken coop. Tony built it several years ago and then modified it a couple of years ago. He put the nesting boxes on the outside to give the growing flock more room on the inside.

Last Meal

He checks into the Huntsman’s for surgery at 6 am and can’t eat or drink after midnight, so breakfast at Village Inn it is! (Can you see that he left his readers in the car, so he had to borrow mine? Ha ha)

May 3, 2017

Tony had a mishap on the way to work on Monday…

If you follow me, you’ll recall that he was up into the early hours of April 20th replacing the rocker arms on the car. He was confident that he had all the bolts tightened down properly. Well, somehow one of them wriggled loose.

After traveling down the highway at 55-60 mph, he turned off onto the road leading to his work 50 feet away and felt something clunk under the car. He pulled off to the side of the road and found a bolt on the other side of the road. He thought he could limp the 1/4 mile to the parking lot, but as he pulled in, the tie rod dropped and the wheel turned sideways skidding to an immediate stop. This is our most reliable vehicle.

Tender Mercy #1 – He wasn’t traveling at high speeds when it happened. He would have been seriously injured or killed.

Tender Mercy #2 – A coworker came out to see what happened and called his friend who owns Eaton Towing who towed the car to another friend that owns Shelley Auto Care.

Tender Mercy #3 – After hearing an explanation of our situation and our need for the car, the owner of Shelley Auto Care (who was out of town) instructed his mechanic to make our car a priority. They assessed the damage, ordered the parts and had the car repaired before 4 pm. They charged only cost on the parts and we suspect that some of the labor was donated.

Tender Mercy #4 – During the day Tony had a close friend give him $100 to use for needs and this greatly helped to pay the repair bill.

May 6, 2017

When life is going to change drastically for a loved one, even temporarily, you may be compelled as never before to get a picture of otherwise ordinary activities. Tongue surgery is in 17 days.

Mr. Charming is working on what has turned into a bit of a project car.

It was my dad’s and he loved the dang thing because of the powerful engine and 115.9″ wheel base which makes for a smooth as butter ride.

April 3, 2017

We just returned from the VA in SLC where they evaluated a spot on the side of Tony’s tongue that developed and refused to heal. It has become quite painful and is now affecting his ability to speak and eat.

The biopsy taken at the clinic today came back negative for cancer, but the CT scan shows something abnormal going on. The tongue is also very hard where it shouldn’t be. Often a cancer is found deep within the muscle tissue of the tongue.

There is an ENT specialist from the Huntsman Cancer Institute available on Friday morning to get Tony into an operating room for a better look and biopsy. Then, on Friday, April 14th, the ENT experts will meet at the Huntsman’s to discuss a treatment plan to present to us.

The good news is that the scope of his nose and throat only revealed healthy tissue and the CT scan shows healthy bone and lymph nodes. Whatever we are dealing with this time is only in the tongue tissue and likely not related to Lymphoma (2006-2007) or Leukemia (2009-2012).

April 5, 2017

Tony heard back from the VA Medical Center today regarding the longer pathology on the biopsy that was taken from his tongue on Monday. It came back positive for cancer, so he will not need a surgical biopsy on Friday.

His case will be reviewed by the ENT experts this Friday morning and we will meet with them at 10 am to learn what treatment is recommended.

Meeting Luci

April 6, 2017

Our third grandchild.

Our son Will, his wife Becca and their three children

Morbidity

April 7, 2017

🙏🏻 Please keep those prayers coming! 🙏🏻

The treatment plan for Tony is more involved than we anticipated. We met with the surgeon today. (It’s not good when a doctor uses the word “morbidity.”) 👨‍⚕️

The squamous cell carcinoma tumor is so advanced that most of his visible tongue will be removed. 👅 They will also do reconstructive surgery using muscle from an arm or leg. 💪🏻 Surgery will be an all-day event and hospital stay at the Huntsman’s will be 7 to 10 days. A feeding tube and tracheotomy will enable him to receive nourishment and air as he begins to heal.

He will come home to convalesce for a month and then return for 5 weeks of radiation and chemotherapy. 🤕

He is looking at 6 months to a year before his quality of life resembles what he is used to.

We don’t have a timeline yet. We expect to hear more on Monday.

This has been a lot to take in today. After learning that he was going to lose his tongue, Tony took me out to lunch at Rodizio Grill Brazilian Steakhouse and ate like it was his last supper. It’s going to take some time to mentally process what lies ahead. 🕰

April 15, 2017

We were among a fortunate group of members that had dry run tickets to prepare for the Idaho Falls LDS Temple open house. Our faith in Jesus Christ and his plan for us give us great comfort.

Spencer, Emily, Debra & Tony

It’s fun having littles that enjoy hanging out at Grandma and Papa’s house. 🐰🐥🥚

Coloring Eggs with the Grandchildren

April 18, 2017

Update on what is scheduled for Tony…

Fri. Apr. 21 – MRI in Salt Lake City.

Mon. Apr. 24 – Meet with a Nutritionist in Idaho Falls.

Wed. May 10 – Meet Dr. Buckman, the reconstructive surgeon at the Huntsman Cancer Institute in SLC.

Wed. May 11 – Meet with Dr. Monroe, the surgeon that will remove Tony’s tongue and lymph nodes in his neck at the Huntsman Cancer Institute in SLC.

We have not yet been told a date for surgery.

The chest CT scan that was done on April 7 revealed a lesion on Tony’s liver. I hesitated in mentioning it because we don’t know anything about it yet and it is not uncommon for a CT scan to pick up lesions that are benign. The MRI should show a clearer difference between normal and abnormal tissue.

Because so many of you are including Tony in your prayers, I wanted to give you everything we know so that your prayers can be specific.

Thank you so much for your continued prayers of support.

April 20, 2017

It is 1:30 a.m. and my man is in the driveway finally finishing up replacing the rocker arms on the car so that we can travel to Utah safely for his doctor appointments. I don’t know how he does it. #imarriedsuperman

Tenacity

April 22, 2017

Admiring the tenacity of this incredible man that is about to face one of the most challenging times of his life.

He was diagnosed with cancer in his tongue earlier this month and is preparing for surgery to remove most of the visible part of his tongue and have it reconstructed using muscle from his arm or leg.

#mysweetheart 
#cancerawareness
#cancersucks
#lymphomasurvivor
#leukemiasurvivor
#squamouscellcarcinoma

Save the Date

April 25, 2017

Emergency SleepOver

May 1, 2017

Our sweet granddaughter, Luci, was born at 37 weeks. She had undeveloped nerves in her colon which resulted in a bowel obstruction. Will and Becca took her to Primary Children’s Hospital in Salt Lake and we helped with the other two children, Sophie and Charlie. (After a couple of days in Utah, Will and Becca were able to return home with Luci. Surgery was not required and Luci is thriving.)