Tony's Challenge

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

Month: May 2017 (Page 1 of 2)

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

Day 6 Tongue Cancer Surgery

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.

Once rounds were over this morning and Tony had “eaten,” we both climbed back in bed. It felt so good to get a couple of uninterrupted hours of sleep!

A couple of brothers and sisters from our church (LDS) came to give us a spiritual thought and administered the sacrament for me.

With tomorrow being Memorial Day, we get a bonus day of healing in the hospital. As soon as radiology is open, a swallow test will be done. They will look under contrast with an ultrasound to see if everything is sealed properly and to make sure he isn’t going to have food and drink going into the airway when he swallows.

It will still be a few days before pathology on the tongue comes back. What they find there will determine what, if any, chemotherapy will be necessary – in addition to the radiation.

We are so grateful for all the service and prayers that are being offered on our behalf. We read every comment and word of encouragement you give. They bring us great comfort and shore us up for the long journey ahead.

Day 5 Tongue Cancer Surgery

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!

Last night was another long night of mucous management and little sleep. Our nurses yesterday were quite busy managing their other patients, so Tony had only received half his nutrition before 7 pm. Today our goal is to get all the nutrition in before 7 pm and see if it makes a difference with the mucous production. The new, smaller trach tube should help too since there won’t be as much mucous-causing irritation.

Tony is now tolerating the bolus feedings well. No acid reflux or nausea. He is having some constipation but was finally able to move his bowels today. (Which is normal after such a long time under anesthesia and the meds he is on. It takes a little while for the system to catch up again.)

Sleeping soundly. Mouth closed, breathing from the nose and snoring just a little. Making up for all the sleep he missed during the night! 😴

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.

As you read through my posts, you might think “TMI” (too much information). As I was searching the internet about what to expect, I didn’t find very much except medical definitions. There were a couple of YouTube videos from people who had partial glossectomies, but nothing as extensive as what Tony is going through. I didn’t find anything at all from a caregiver perspective.

Hopefully sharing our journey will give others the hope and confidence they need when faced with some of life’s greatest challenges. 👊

Just wondering… is anyone curious about what the flap looks like? Should I post a pic, or is that too much?

Due to a lot of positive feedback, I have posted pics of the flap below.

This is the free flap from the thigh to the mouth. Free flap simply means the “transplantation” of tissue from one site of the body to another, in order to reconstruct an existing defect. “Free” implies that the tissue is completely detached from its blood supply at the original location (“donor site”) and then transferred to another location (“recipient site”) and the circulation in the tissue re-established by anastomosis of artery(s) and vein(s).

Can you see the hair follicles? He literally has a hairy tongue at the moment. Ha ha

It kind of looks like they had to take something that was flat and roll and form it into a shape that would allow contact with the roof of the mouth.

I asked the surgeon… that is exactly what they did.

 

Day 4 Tongue Cancer Surgery

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.

The worst part of a head and neck surgery is the mucous. We take for granted how easily we can move saliva and nasal discharge around from our nose, mouth and throat. Suctioning the trach causes irritation, so Tony has done pretty well managing it by coughing and using a suction wand called a Yonker which is similar to what we see in the dentist’s office. Last night was especially difficult and it took him a while to get comfortable.

Tony is sporting a necklace of stitches from ear to ear in the fold of his neck above the trach tube. The drainage tube on the left side was removed this morning.

I am cracking up. 😂 I stepped out to get some milk for my superfoods shake and when I came back Mr. Charming was watching Food Network. Talk about positive thinking! Ha ha

The speech therapist stopped by today and delivered a huge dose of hope. She has a lot of experience working with total glossectomy cases. Tony is in very good hands. The future looks bright! ☀️

I can walk and chew gum, but walk and take a selfie, not so much. Ha ha

Day 3 Tongue Cancer Surgery

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 Tongue Cancer Surgery

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.

The IV’s are in his right arm because they prepped his left arm in case they needed to take the flap from that location. Thankfully Tony is ambidextrous so he can write on a little white board when I can’t understand his gestures. I’m wishing we had played a few games of charades to get in some practice before surgery. I am clearly not very good at it. Ha ha

Colleen and Emily are our nurses today.

Yay! He is upright and sitting in a chair! 👏🏻👏🏻👏🏻 I am being careful about the images I post of Tony because I don’t want anyone to find them disturbing. This one made me celebrate. So proud of him!

He did great. Sat in the chair for a long time, put on his readers and checked messages on his phone. 👊

Hmmm… wonder what he is trying to communicate here? 😂

Dr. Monroe just told us how pleased he is with the way the surgery went and the progress Tony has made post-surgery. He put a finger over the trach tube and had Tony utter his first sound, ‘Hello.’ After a couple more days of healing they will be able to put a valve on that will allow Tony to communicate better than snapping his fingers at me. 😏

Dr. Monroe prepared us for another couple of rough days ahead. The post-surgery swelling hasn’t peaked, so things are going to get a little worse before they get better.

Tomorrow’s goal will be walking🚶 to prevent pneumonia and blood clots and moving out of the ICU to the regular floor.

Other mIlestones of day two:

 IV that monitored blood pressure during surgery was removed.

 Started receiving nutrition slowly through the peg tube. (He told us his tummy was grumbling mid-morning. A good sign!)

 Urinary catheter came out and he was able to go on his own.

Dr. Bruchmann stopped in. He says Tony looks like a million bucks and is easily in the top 5% of patients for day one post surgery. He said the flap looks perfect. Dr. Bruchmann couldn’t hide how pleased he is. 🤗

Dr. Bruchmann performs a lot of these surgeries on older patients that have many other health issues (usually from poor lifestyle choices) so helping Tony has been a bit of a delight for him.

(Just an interesting side note because this medical condition is so unfamiliar to many of us… the front desk gal here at the ICU last night told me that they average about two mouth cancer cases a week.)

Woah! They weren’t going to push him to do this until tomorrow!

24 hours post surgery. Wow!

Near Total Glossectomy Neck Dissection Free Flap Reconstruction

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.

How is He Still Smiling?

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)

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