Coaching Through Cancer

Apparently I’m the only one amused with my picture taking abilities! But…I’m choosing to see our current situation with a lense of lightness instead of the alternative.

It’s been a challenging few months for Tony and we acknowledge that we’ve not been super transparent with everyone since we started this leg of our journey back in December. We know you all have been thinking about Tony and sending all the love and prayers. Which we are incredibly thankful for.

So, let me take you back to December when things took a turn for Tony. He hadn’t been feeling great for a while , lack of appetite, low energy, poor sleep and gradual weight loss.

We had made a trip to Mayo at the end of October to see if there was anything we could do about the trach at any point - which we cannot and the trach is permanent. And while there, they found that he had an infection in and around his trach and sent a sample off to the lab for further testing.

They promptly put him on an antibiotic, which seemed to help. Later, at his oncology appt we shared with them the test results from the culture they took at Mayo and sent us to infectious disease for further evaluation. It took a week to get into see that doctor and Tony progressively got worse. More mucus, continued lack of appetite, nausea, etc. it wasn’t pretty.

Come to find out, the ID Doc explained that he had pneumonia. We were grateful that it wasn’t something worse and was treatable. Then we start round #2 of antibiotics.

He gets better-ish. By this time the holidays are creeping up on us, he’s still not feeling awesome and decides to take the remaining month of December off to rest. We again, were grateful for his work being so understanding and for the time to stay home and recover. In December he did have scans and thankfully 🙏 everything was stable.

Now, I wish I could tell you that rest in December did the trick but he continued to decline, eat less and have more and more mucus.

At his regular scheduled treatment appointment on Jan 2nd, they immediately sent us to the ER with elevated white blood cell counts, extreme drop in weight and very low potassium. It was here that they determined it was still the pneumonia and very serious.

He spent 6 days on heavy IV antibiotics, fluids and was eating regular food. His energy was better and the color back in his face. We also determined that the pneumonia was caused by food/fluid getting into his lungs - not from being exposed to someone that was sick.

He was able to pass the solid food part of his swallow test but liquids from that point on, needed to be thickened to keep them from going down “the wrong way”.

Again…I wish I had good news at this point but there was another trip to the ER and we are now on our 3rd hospital stay since the beginning of the year. Nothing we were doing was helping, he wasn’t getting better and the extreme weight loss was frightening to watch.

After losing 12 lbs in 2 weeks (with a total of 70 lbs lost since Oct 😳🥺) with no improvement in symptoms even on an oral antibiotic, his oncologist said enough is enough. It’s time for a feeding tube to get him well. And we agreed. The up and down of this journey has been heart wrenching. 😞😞

On Friday morning, he had a feeding tube placed and finally started to get some solid nutrition that afternoon. He has successfully completed 2 full “meals” through the tube that they’ve given him slowly over the last 2 days.

On Monday, he will do another swallow test to determine if he can “eat” real food in addition to the feeding tube. We are pretty certain it’s liquids that are the culprit causing the pneumonia and not solids, but we will know tomorrow.

Whew. Ok. That was a lot. But the takeaway for everyone is that:

1. The pneumonia was from fluid/food getting into his lungs. All due to the damage and trauma to his neck and throat over the 7 year’s.

2. The feeding tube will help his lungs heal, get the needed nutrients that he’s been lacking for months and help him gain some much needed weight back.

We do not know if the feeding tube will be permanent but we are grateful he has it so he can recover.

Through all of this, he’s had only a few treatments so we pray that his cancer continues to stay stable. We will have scans some time this month.

You all know Tony is not a quitter and the last few months he has proven that this is not the end of this journey. We simply have too much life left to live together. ❤️🙏

So. I choose to see the light on this journey as it would be too easy for us both to fall too far into the dark if we chose to. Every day we have a choice to live, to be grateful, to be kind, forgiving and lead with love and gratitude. Today, I’m grateful he humors me with goofy pictures even if he doesn’t smile….because he’s still here with me to take them. 🙏❤️

Much love to you all! We are still here and we are still fighting this ugly battle with each other at our sides. ❤️🙏

He’s finally HOME!

After 5 days in the hospital and 1.5 days of eating REAL food without any issues, this guy came home yesterday afternoon and we are both VERY thankful to have him back where he belongs.

On Monday, he passed his swallow test with flying colors and immediately got the food menu to order actual food to eat. He got meatloaf with mashed potatoes, a side of mashed potatoes 🤪, cooked carrots, a glass of milk, Diet Pepsi and chocolate ice cream. And you know what?

He ate every last bite of that giant plate of comfort food and the best part….he could actually TASTE all of it. 🥹🥹up until Wed he still couldn’t taste food from his chemo treatments and even the smell of some foods made him nauseous.

Well friends…not anymore! Some foods he’s tried he can’t taste yet but for the most part, he can taste most everything he’s eaten.

We often don’t think about the things that are part of daily lives that just happen naturally. Eating. Breathing. Walking. Talking. Sleeping. Moving. Tasting or smelling food. But when you can’t do any of those things, life looks and feels quite different. And to have ALL of those things back and working properly is truly a gift. One that we both are so freaking grateful for. Tony especially.

He’s not had any issues with his new neck jewelry 😉 and we are both learning his new normal as far as care, etc. This addition to our daily schedule is welcomed because it just means we can start living again. The pause button is no longer stuck in the on position. 🙏

So what’s next you ask? He will return to work full time on Monday (is anyone surprised by this? No!) he has zero restrictions for what he can and can’t do. He will just need to be mindful about covering up his neck when outside doing yard work or working on any of the items on his “honey do” list. 😉

He can eat and drink like normal, which he has continued to do. And sleeping….last night was SO quiet and I may have put my hand on him to make sure he was breathing but there was NO snoring, not even a little whisper from his trach. This silence was a beautiful noise. He no longer has sleep apnea! Ha! Not a route we recommend for anyone that has it. 🤪

Thank you to everyone that stopped by, called, texted, posted here and shared with me privately. Your support, love and kindness was felt by both of us.

Our plan now is to disappear into our “normal” lives. Do boring couple things together like eat dinner at the table, have a drink on Friday night, go to ball games, watch movies all night, drive around on the backroads doing nothing and enjoy every little thing that we do together and even those we do apart.

One day at a time, friends. One. Day. At. A. Time. 🤟🏻
Stacey and Tony

Hello Everyone!

It seriously has been a LONG minute since Tony and I have shared any updates with everyone. For this we truly apologize. This round of treatment has not been especially kind to him so we’ve been laying low, handling life at home and living the best we can since he started this journey back in December.

The first three months weren’t as unpleasant as the last three have been but I think you all know Tony well enough to know, he’s not let it put out his fight. He still gets up, keeps doing and goes to work every day, he’s missed a few days this go around but he keeps moving even if he feels like a$$.

He still humors me with my )
(right now - short) honey do lists and does what he can. He still cuts the grass (which I think he secretly enjoys just won’t say it!) He still makes me breakfast on Saturday mornings just a little bit later in the day. And we still enjoy our time together even on the really sucky days. Sitting with him on the couch while he snores and holds my hand, I wouldn’t trade for the world.

BUT, my friends…despite the incredible hill this man has been climbing for the last 6 months…there IS a bright light on the horizon!

We received his scan results yesterday and compared to the ones he had at the end of February…wait for it….

Everything has remained STABLE! NO new growth. NO new lesions. Wahoo!!

This is incredible news and we are so freaking grateful that this ugly disease is responding to this treatment. 🙏🎊🙌

So, what’s the next step. Great question! We were hoping to be done with chemo, however the plan is to finish up this cycle, so including yesterday, he will have one more chemo/immunotherapy treatment next week. Then the chemo will STOP 🙏 and he will do ONLY the two immunotherapy’s he’s been on the past 6 months weekly until July when we will rescan. At that point, if everything remains STABLE, he will switch to every other week on the same two immunotherapy’s. 👊🏻🙌🤞🏻

We’ve always known he will have to do some kind of treatment, always and our goal now is to keep it STABLE. NO new growth. NO new lesions. 🙏🙏

So we celebrated with lunch at Bluebird Cafe in North Liberty yesterday (he ate almost his entire plate of food 🙏👊🏻🥳) and I made him take pictures with me so I could share with everyone. 🤪 Doesn’t he look so excited?! 😂😂

Thank you everyone that has reached out or that has been thinking and praying for him along the way. It means the world to us and on the really hard days, we feel it all the most.

For now, we get through the next two weeks and we work on getting him healthy again. We have an anniversary coming up (wahoo!) and a summer full of honey do lists and good times! ☀️

We hope you all have a beautiful day and again, thank you for thinking of us! Keep the good vibes 😎 coming!

🤟🏻 Stacey and Tony