Tony's Challenge

“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.

Three weeks ago yesterday they wheeled him out of surgery and he looked like death warmed over.

The kids have been craving Dad’s crunch wraps. Super Dad satisfied even though he can’t eat what he makes.

Tony has been going to work this week and things feel almost ‘normal’ around here. He was discharged from home health today. They have only been here twice… once to admit him to the program and once to discharge him from the program. All they really did was receive and deliver his liquid nutrition. Ha ha

He just keeps inspiring… Tony bore his testimony during Fast & Testimony Meeting today.

(For our friends of other faiths… Once a month we fast and give the money we would have spent on meals to the church to be used for those that need welfare help. During Sacrament Meeting, attendees are invited to go up to the pulpit to an ‘open mic’ and share a brief faith-promoting message.)

It is a miracle that Tony is already able to speak in a way that is largely understood. Many people were deeply touched as he shared his testimony that our trials in life are not punishments from God, but opportunities for us to learn and grow.

When your spouse wakes you up from a deep sleep before the butt-crack of dawn because he is bleeding from the mouth and can’t tell where the blood is coming from…

(He got the bleeding to stop after about 20 minutes of coughing and flushing his mouth with cold water.)

…so you call the after hours ENT doctor who tells you to come into clinic…

Two weeks post-surgery…

Scary vittles. Tony ate his first meal – cream of chicken soup. Put a spoon full in the mouth, swallow, swallow, cough. It was scary because he didn’t know if it was going down the correct tube. He wanted to stop half-way and pushed through to finish the mug.

Tony was also able to go for 9 hours between pain meds. He is on children’s Tylenol, a smidgen of oxy and an aspirin a day.

First post-surgery follow-up. It’s been two weeks tomorrow.

✅The sutures in his leg were removed today.

Dr. Buchmann, the reconstructive surgeon was pleased and told Tony to ‘go for it’ when it comes to activity level, brushing his teeth and massaging his neck. Dr. Buchmann was also clearly impressed with the speech ability Tony has so soon after surgery.

✅ Tony took another swallow test. He is still aspirating into the lungs. The speech therapist called him a ‘silent aspirator’ which means he doesn’t gag, choke or cough. (Surprisingly, this condition affects 40% of the population!) There isn’t enough tongue in the back of his throat to keep fluid from going down the wrong tube and into the lungs.

Tony can begin taking nutrition by mouth, but it has to be the consistency of nectar. (Think Kerns brand beverage.) He has to put it in his mouth, swallow, swallow and cough. He can’t drink water with his meals. He can only sip on water in between meals and after cleaning his mouth to prevent bacteria from going into the lungs. We have to monitor his temperature. If he fevers we report it and discontinue water by mouth to prevent pneumonia.

He received a lot of coaching from the speech therapist on strengthening the swallow. What he achieves now is hugely important, because radiation will take its toll. He won’t be able to achieve post-radiation what he can achieve right now. As he heals and exercises, his ability to swallow without aspirating should improve.

We also met with a nutritionist who provided some food ideas. The goal is to gradually increase the amount of nutrition he takes by mouth and decrease the amount he takes by feeding tube.

Third day home post surgery…

Awe. Our baby is growing up so fast… he’s already feeding himself!
(It was totally his idea to pose for this pic and have me call him baby. Ha ha)

Second day home post-surgery…

Field trip to the nursery. Emily is so thrilled that I made them stop so I could take a pic. Ha ha…

We accomplished a lot around the house before Tony’s surgery, but the garden wasn’t one of them because the weather didn’t cooperate. While we were gone, Johanna started preparing the soil. I sure missed having Tony’s help as I worked on it today. I was glad that he was willing and able to pick out some plants for us. Gardening is one of those things we have always enjoyed doing together.