Tony's Challenge

When life presents challenges, we get to choose our attitude.

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Three Weeks After Glossectomy

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

Tony is making progress on the swallow. It’s going a lot slower than he wants. He is able to get sips of water down now. So far he has eaten cream of chicken soup, thin sweet potatoes, and Kern’s nectar. Since he hasn’t lost his sense of taste like we thought he would, we have resorted to some baby food combinations like Apples & Mangoes with Rice Cereal and Garden Vegetables & Beef. He is eager to graduate to more satisfying fare.

He keeps his left thigh wrapped with an ace bandage most of the time to avoid a seroma. There is one small area near the knee where he is retaining a little fluid. He doesn’t limp at all, so no one would guess he recently had surgery there.

The most annoying thing right now besides over-producing salivary glands is that his mouth stinks and he says the flap tastes like sweat and bile. 😝 Good oral hygiene only helps temporarily and it quickly returns.

Testimony

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.

Tony had his white shirt pressed and ready last night with full intention of going to High Council meeting at 6:30 am. Then, he had two nose bleeds that kept him up and he just didn’t have the energy he needed.

He looks good and makes it all seem easy. The harsh reality is that he is still trying to learn how to swallow his own saliva. For most of us, it is a reflex that we don’t even think about. For Tony, it requires concentration.

Tonight he made smoked salmon for our Sunday dinner. It gives him joy to cook for us even though he can’t eat it. (I really had a hard time – throw a tantrum kind of hard time – when he started doing this post-surgery. I really don’t like to cook, so I have all kinds of respect and appreciation for his willingness to do this for our family when he can’t eat it himself.) I prepared some thin mashed potatoes for him and they were less than satisfying.

We’ve got a couple of good weeks where things will seem almost normal before radiation begins. Tony is going to head off to work in the morning and see how it goes.

During clinic last Monday the reconstructive surgeon reminded us what is yet to come… He said the first three weeks of radiation won’t seem so bad. The last three weeks will be extremely 😖 painful, and it will last for several weeks after.

During our pre-op appointment, he told us that by Christmas Tony should be feeling good again. By this time next year, he will be settled into what will be his new normal.

Bleeding!

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…

…and you hop in the car, drive three hours to the Huntsman to find out…

It was a simple, bloody nose!

We are so relieved! The peace of mind was worth the six hours we will spend on the road today.

The doctor scoped his nose and throat and found the area in the nasal passage that had caused all the trouble. None of the blood came out of his nose, it all went down his throat and settled there. Because of the difficulty swallowing and being a ‘silent aspirator,’ it took a while for him to cough it all up.

The bonus was seeing how excellently the flap and throat are healing!

They are prescribing an ointment to swab inside the nose and a nasal spray. We have already been using a humidifier in our bedroom.

Now if I can just get the adrenaline that is coursing through my veins to settle down. Ha ha

Scary Vittles

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.

He rototilled the garden this morning, then drove over to Golden Valley Natural to check in with his co-workers. He enjoyed seeing his work family. Because his speech was already impaired by the tumor prior to surgery, someone he saw thought he hadn’t had the surgery yet. Tony is pleased that people are already understanding so much of what he says.

Halitosis… was extreme. So much so that I was worried that Tony may have an infection. I asked twice during our clinic visit and was comforted to know it is a normal part of the healing process. He can now use toothpaste and mouthwash, so it is much improved.

The flap has healed well and it looks like it is conforming to the shape of his mouth. Hair is still growing and he can feel it on the roof of his mouth. He probably won’t have hair on the flap after radiation.

Post Surgery Follow Up

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 (Glossectomy)

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)

Tony told me that he had the best sleep he has had since surgery. He was still up almost every hour, but when he slept he was dreaming. 😴

The home health nurse called to check on us and decided she didn’t need to make a home visit today.

Yesterday Tony showed me something I wasn’t aware of. There are sutures wrapped around his bottom front teeth, holding the floor of his mouth up while it heals. I’ve been a rock with everything they had to do to him, but for some reason, that bit of information just sickened me.

To keep his mouth clean, Tony rinses several times a day with salt water. He said that he tipped his head back today and gargled a little without aspirating. He is anxious to pass the swallow test. One of the things he misses most is drinking water. (Which they tell us can be the hardest thing to swallow.) He has been craving pizza 🍕 and he isn’t even a big pizza fan. We feel so badly eating in front of him, but he finds pleasure in inhaling deeply the aroma of foods.

Interestingly enough, he can still taste. We know because when he burps there is flavor there. 😜 Turns out, there are a lot of taste buds in the mouth, not just on the tongue.

We received word that the tumor board met about Tony’s case again today. The pathology is back and they are recommending chemotherapy in addition to radiation. 😥 We have a follow-up appointment with the reconstructive surgeon on Monday and he will go over the pathology and treatment recommendation with us.

The radiation will be provided by the Huntsman Cancer Institute and chemotherapy will be done at the VA Hospital. They are working on setting up the orientation appointments for when we will be down there for another surgery follow up in a week or two. We anticipate five weeks of treatment. Radiation treatments will be Monday through Friday. The actual radiation treatments take 15 or 20 minutes a day. Chemo is a four-hour session one day per week. Driving 6 hours round trip every weekday is just too hard, so we will be spending a lot of our summer in Salt Lake City.

Second Day Home Post Surgery (Glossectomy)

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.

Another good milestone today… we taped a plastic bag over the PEG and Tony was able to shower. (Up until now it’s been sponge baths.) When he was done he sighed heavily. I asked if he was okay and he said it was a sigh of contentment because it felt so good. 😌

Recovery

First day home post-surgery…

Tony loves movies, so he is doing one of his favorite things to pass the time while his body heals.

Today we met with a nurse from Access hospice home health and she delivered a couple of cases of nutrition and another box of various goodies from the VA. A nurse from Access will be visiting us a couple of times a week.

Because part of Tony’s treatment plan included a tracheostomy, the VA arranged for a local respiratory specialist and some expensive equipment. They didn’t realize that the trach tube was removed while we were still in the hospital. We are so blessed to not need all of that care here at home!

It’s proving to be a bit of a challenge settling into a new routine. I’m going to have to set some alarm reminders on my phone so that we don’t get distracted. Nutrition is administered four times a day and it takes about 30 minutes to push it through the feeding tube. Then there are several meds to keep track of. Tony has been a little grouchier than usual today and I think it’s because he went longer than 6 hours between pain meds.

Tony isn’t in a huge amount of pain. He does comment that it feels like some stretching is going on around his neck. (I can’t imagine what that must feel like.) He also experiences a bit of discomfort in the left leg. When he is walking, the leg sometimes lurches forward quickly as the thigh learns how to function without the muscle that was removed.

While we were in the hospital, Tony set the temperature of the room at 69 degrees, so he has been a little uncomfortable with these 80 degree temps. We have fans running, but I wonder how long it will be before he agrees to let us put in the window A/C. The kids have already pulled the A/C units out of storage. Ha ha

I did manage to coax him out of the house for a brief walk this evening as it was cooling off.

Going Home

Day 8… (one week post surgery) He’s out of the hospital. Crazy guy hauled his case of nutrition to the car.

Stitches were removed from the neck this morning.

Ouch! This is left leg where the free flap was removed. Stitches from the knee to the hip. The stitches in the leg will remain for another week.

He is looking forward to going home after we get prescriptions figured out at the VA pharmacy and stop for a quick visit with his brother, Scott.

Many people escape cancer. Some people battle only once in their lifetime. Then there is my Mr. Charming, surviving three, unrelated cancers.

The military decorates their soldiers with pins. I decided that it’s time to decorate my soldier.

Lime – Lymphoma
Orange – Leukemia
Burgundy & White – Head & Neck

Day 7 Tongue Cancer Surgery

Day 7… (Six days post surgery)

Doppler wires were pulled from the neck. This is cool technology, but it is sensitive and delicate. They stapled and sutured that thin plastic to his skin to hold it in place. This is the same technology that allows us to hear a baby’s heartbeat in the womb. In this case, a tiny thin piece of silicone was placed inside the flap to hold tiny wire sensors so that the doctors could listen to the blood flow. This aids a lot in telling the doctor if the surgery was a success or if the flap is failing. The first night in ICU the Doppler volume was all the way up so staff could monitor it easily. I had to request ear plugs to help damper the noise. While in ICU, the flap is checked every hour. Once we were moved to the floor, they checked it every four hours.

 The right neck drain and leg drain were removed.

 No more pole dancing. Tony finished the last drip of antibiotics yesterday. All meds are being given through the feeding tube or with a shot.

Swallow test shows no leakage, so we know the doctors sewed everything together well and it is healing. The other part of the swallow test was a disappointment for Tony. He was hoping to begin taking some nutrition and hydration by mouth right away, and he struggled. I asked him what it felt like having fluid in there, and he said, “Like I have no control.” He will not take anything by mouth for at least another week while things continue to heal. The speech therapist will work with him tomorrow and show him some more exercises he can do.

We had some visitors stop by today and we all giggled when Tony held up this message. He still has his sense of humor.

#cancerawareness #cancersurvivor

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