Tony's Challenge

Well, here we are, 13 months post-near-total glossectomy. (It’s been 9 months since the completion of radiation/chemotherapy treatments)

Everything Looks Great

Dr. Monroe, the ENT doctor that removed Tony’s cancerous tongue, continues to be pleased with Tony’s progress. From a head and neck cancer perspective, everything looks great. (Recurrences usually happen within the first two years. So far, so good.)

Tony is still experiencing difficulty with exposed bone near the tooth line. He sometimes wakes up with blood clots in front of the tongue flap which the doctor says is not unusual. Tony found another small pocket of infection along the gum line between the teeth and flap about three weeks ago and was able to get it cleaned out and healing on his own.

Our next appointment with Dr. Monroe is in three months and will include a CT scan.

Day 124 Post Radiation/Chemotherapy Treatments. (229 days since near-total glossectomy to remove tongue cancer) 👅

We met with Dr. Monroe on Friday, January 5, 2018 for a follow up to the infection that took us to the ER at the SLC VA on New Year’s Eve.

The good news… Dr. Monroe did not see any evidence on the CT scan or during his inspection of Tony’s mouth that would suggest a recurrence of the cancer tumor which sometimes happens with squamous cell carcinoma.

While doing his oral care routine, Tony discovered an infection under the flap along the left jaw bone.

We sent out a Facebook request calling on our prayer warriors and headed to the VA ER in Salt Lake City just before 2 pm on New Year’s Eve. As it was Sunday, our church meetings were about to start, so we stopped in quickly to find Brother Isle and Brother Jensen to have them give Tony a blessing.

There wasn’t really any other choice, even though it was New Year’s Eve. We needed to be at the facility that had all of Tony’s history and a specialist on-call. Fortunately, the VA ER wasn’t very busy so Tony’s exposure to the flu virus that has been running rampant was low.

We drew another blessing card when the surgeon we had worked with on the earlier infection walked in the door. He inspected Tony’s mouth and ordered a CT scan. We caught the infection early enough that he could prescribe an antibiotic and send us home. We were relieved that it didn’t require a hospital stay and more surgery!

We made it home just in time to ring in the new year. Look at how exhausted we were!

Day 101 Post Chemotherapy/Radiation Treatments. (206 days since near-total glossectomy.) 👅

We are so grateful for all the tender mercies we are experiencing. 🙏🏻 Even the weather cooperated as we traveled to Salt Lake City on Friday for Tony’s 3-month post-treatment appointment. ⛅️

He met with the speech therapist who gave him some great tips on improving his ability to swallow. Tony now needs to focus heavily on strengthening exercises to keep the tissue that received radiation pliable, supple and prevent fibrosis.

The abscess under the chin is now completely healed. I had continued to pack the divot that remained in hopes of coaxing it to fill in. Dr. Lee, the Resident that saw Tony yesterday said that maybe gravity will help over time, but it would take another procedure to make it look more aesthetically pleasing. Thankfully, it’s under Tony’s chin where it isn’t so noticeable.

Dr. Monroe continues to be very pleased 😃 with Tony’s progress. He was a little surprised that Tony is already putting in so many hours at work. Dr. Monroe said that over the next three months, the taste buds in the throat will recover, so maybe food will taste better. Energy levels will continue to improve. Dr. Monroe used to tell people they would feel their quality of life return in six months. Now, after interviewing so many patients, he has learned that it takes one to two years.

Tony can now use prescription fluoride toothpaste to fortify his teeth. (Attempting to use it before now caused a burning sensation.)

When Tony eats oatmeal, he can feel tingling on the tongue flap. The doctors think 🤔 Tony is experiencing phantom sensation. We do know that nerve endings on his chin are reconnecting. He has a dimple-like twitch on his chin that he can’t control. It’s very distracting when you are trying to have a conversation with him. Ha ha

Tony has really pushed himself with food. On Thursday he ate an almond and a cashew! He really wants to be able to take all his nutrition by mouth. Dr. Monroe said for the tube to be removed, Tony needs to be taking 100% nutrition by mouth and not lose any weight over the course of two weeks. Tony set a personal goal of making it happen in 2 months.

After the appointment, I noticed a bit of a happy skip in Tony’s step. Later, he confided in us that prior to the appointment he had been afraid that the doctor would be disappointed that he hadn’t made more progress! I had no idea he was being so hard on himself.

Tony had a blood draw to check kidney function and then we had to wait for a couple of hours for them to work him in for a CT scan so that we wouldn’t have to make another trip. This is the scan that will provide a benchmark for all future scans. Tony’s next appointment with Dr. Monroe will be in 3 months.

It was fun to have Johanna join us for the day trip. We took her to lunch at Johnny Rockets at the City Creek Center and found a green velvet dress that she loved at Rue 21. We stopped at Bob and Helen’s (Tony’s parents) on the way home to exchange Christmas gifts. 🎁

Our 4th of July was low key. I think Tony and I were still recovering from our quick trip to Salt Lake City the day before. Tony slept in late, caught up on some Facebook and puttered around the house. It was good to relax.

It has become a tradition for William, (our eldest son) and his wife, Rebecca, to host a 4th of July barbecue at their house for our family and some of their close friends.

Our son Will at the grill, his wife Becca and their friend, Carl.

Tony quietly tested a lot of the foods to see what he could manage. He had a hamburger without the bun and tried some pasta salads. Later, I saw him nibbling on a hot dog without the bun. I tend to get excited when I see Tony eating. He shakes his head at me. Eating takes a lot of time and effort not to mention how frustrating it is for him that he can’t just eat whatever he wants like the rest of us.

Tony having a conversation with friends. Our grandson Charlie in the foreground. Tony carries a washcloth hankie where ever he goes. Sometimes it is for catching drool from the over-production of saliva or for coughing up mucus that he hasn’t been successful at swallowing down. I admire Tony so much for putting himself out there in these social activities. (I fear I would become a recluse if it were me going through this!) Tony is quick to point out how kind and understanding people are when he explains his story.

Our granddaughter Sophie and our youngest daughter, Emily.

Daughters Josie and Jacque and our youngest granddaughter, Luci.

Our son, Spencer, far right, with his friends Karl and Donald.

On the road to SLC again… not sure how the appointments fell together so quickly! Probably more divine intervention.

One Step Closer to Radiation & Chemotherapy Treatment

Everything checked out. No major dental work needed. (Any extractions, etc. would have had to heal before radiation could begin.) Tony has had a temporary crown for quite a while, so he is scheduled to get a permanent one at the end of the month and a cleaning in a few weeks.

So here is the rest of the story, so we can share how grateful we are when the universe smiles…

Eating Out

“Light years ahead” are the words ringing in my ears. That is what Dr. Monroe said today regarding Tony’s progress. Dr. Monroe couldn’t hide how pleased he is. It takes years for most glossectomy patients to achieve the level of ability and articulation that Tony has already reached only one-month post-surgery. This is a testimony of the power of your prayers on Tony’s behalf.

Dr. Monroe is always careful to set “realistic expectations.” I’m glad that Tony is more interested in what is possible instead of what is typical.

Dr. Lloyd noticed a spot of concern on the tip of Tony’s tongue flap yesterday, so we brought it to Dr. Monroe’s attention. It was a small pocket of infection along the suture line, so Dr. Monroe cleaned it out and dabbed a little liquid nitrogen on it. Tony couldn’t feel a thing.

Suture Line on Tony’s Thigh

After looking at Tony’s leg and hearing our description of the difficulties he has had with redness, swelling and a little seeping along the incision, Dr. Monroe concluded that Tony has a sensitivity to the suture material they used, called Vicryl. The sutures are nearly dissolved and it looks like Tony’s immunity is strong enough that his body is taking care of it and antibiotics won’t be necessary. If Tony ever has surgery again, we will need to remember this sensitivity so that another material can be used.

The speech therapist at the Huntsman guided Tony through some exercises to keep his neck and swallowing muscles strong during radiation. He will begin these exercises right away so that he has good strength before radiation begins.

The nutritionist recommended continuing 8 cans of formula per day and watching Tony’s weight to make sure he is gaining again and not continuing to lose. Sometimes Tony has tried to double up and she explained that taking more than two cans at a time can make it difficult for the body to process the needed protein.

Tony’s speech therapist at the VA went to the mat before his surgery to get $160 in funding for an app for his Android smartphone. He will be able to use this sophisticated app when others are having a hard time understanding what he is trying to say. It will be especially useful during radiation when speaking becomes difficult and painful.

Tony was teasing me today and I told him to be careful if he wants me by his side. He chuckled and said, “You’re not going anywhere. You’ve invested too much in me already.” Ha ha… it’s true. Marriage is an investment. One that pays eternal dividends.

Today we met Dr. Shane Lloyd, the radiation oncologist at the Huntsman Cancer Institute that will be treating Tony.

We found out that the duration of treatment will be six and a half weeks. Tony had radiation in January 2008 to melt away a Lymphoma tumor, so he has an idea of the painful challenge ahead. This time the radiation will be stronger and more than twice as long because this is a more aggressive cancer.

Head and neck cancer is staged a little differently than other cancers. This is stage 4A. As bad as that sounds, remember that Tony is doing well and doctors are going for a cure!

Dr. Lloyd recommended a dental consult. If work needs to be done, it’s best to do it before radiation. As soon as the dental work is done, another appointment with Dr. Lloyd will be scheduled where they will define the treatment area, give him some tattoo marks and fit him with a face mask.

The chemotherapy that is being prescribed has a possible side effect of hearing loss, so Tony will also have an appointment with audiology to see where his hearing is at now so that any loss can be measured. Another possible side effect is kidney damage, so that will also be monitored closely. This chemotherapy will not be as strong as what he received for Leukemia. There will be nausea but he will not lose his hair. Chemo is generally scheduled for a day earlier in the week because it makes the radiation more effective.

Tomorrow Tony will see Dr. Monroe in the clinic for surgery follow up. He will also work with a speech therapist and nutritionist. He weighed in at 164 pounds today, so we may need to make some adjustments.

First soda – root beer – post surgery

Tony had his first post-surgery soda today. Root Beer… he started by sipping it through the straw and that didn’t work out very well. I think it was too hard to control where it was going and made him aspirate a little. Later, he tried drinking it instead and he did just fine.

It takes Tony a while to chew and he has to use his fingers to move the chicken around, but he polished off a KFC chicken thigh and mashed potatoes and gravy! #victory

He is always experimenting to see what he can do. Last week we had pizza and he disappeared into another room with a slice. Ha ha

This is the two steps forward before the radiation pushes him three steps back. Who is this happy guy? #imarriedsuperman

 

Happy Father’s Day / Grandpa’s Day to our hero.

All our children and grandchildren were here for dinner. Tony made a delicious pork loin. After we raved about how good it was, he puréed some so he could have a taste. (It looked awful, but he said it tasted good.)

A lot of the swelling in his neck has gone down so it looks like he has suddenly lost a lot of weight. His neck is still very firm. While he was massaging it, he found a spot that made it easier to swallow when he pressed on it. He is hopeful that as his mouth and throat continue to heal that swallowing will become easier. One of the sutures in his mouth came out today as he was doing his oral hygiene and he noticed that others were missing.

His left leg started giving us some concern on Thursday. He was up late Wednesday night helping Johanna with a project that required a lot of up-and-down and kneeling. He may have pushed it a little too hard. He wrapped his leg tightly on Thursday and may have gotten it too tight… followed by leaving it unwrapped for too long to rest. He spent most of Saturday taking it easy and elevating his leg.

There have been some emotional moments when we stop moving long enough for the realness to sink in. At first I described it to others as an out-of-body experience or like starring in a movie, because this couldn’t possibly be happening to us in real life. Now it feels (to me) like more of a nightmare that we will never wake up from. It takes a lot of effort to keep the feelings of discouragement in check by staying in action mode (which is exhausting.)

Head and neck cancer is at the top of the cancer-related stressors and emotional distress category. I think Tony is handling it beautifully. Me, not as much.

One thing that has helped me keep things in perspective…

Right after Tony was diagnosed with tongue cancer and Dr. Monroe explained what Tony was going to have to go through, he sent us down to Radiology for Tony to get a chest CT scan.

I was all alone in a large waiting area. Presently, a woman came in and sat at the other end of the room. She was on her cell phone and I couldn’t help but overhear her end of the conversation. It quickly became clear that her husband had been having health challenges for quite a while and whatever had brought them to the hospital that day had become routine.

When the call ended, the lady smiled and asked if it was my first time there. (I must have looked like a deer in headlights. Ha ha) I told her that what we were dealing with this time was new, but it was our third rodeo. I briefly explained that Tony was already a Lymphoma and a Leukemia survivor and that until today, we thought we were done with cancer. She nodded with a look of understanding.

Tony had returned from his scan as I asked if she was wiling to share with us her husband’s story.

Her husband had just reached retirement. It had been about six months and they were still figuring out what ‘retirement’ was going to look like for them. Her husband went out into the garage to pull out one of the ATV’s. The throttle stuck alongside his thigh and flipped him over backward, breaking his neck. He was given 6 months to live. She said he can shrug his shoulders slightly, move his wheelchair with a lever at his forehead, and operate a computer. He speaks through a voice box attached to a trach tube. His accident was 10 years ago.

In my darkest moments of feeling sorry for myself, I remember that courageous woman – a stranger that was a gift from God to me. I know it was not a coincidence that she was there that day at that hour with a message I needed to hear.