Tag: life

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Walking

On By HschichieIn blog8 Comments

I write to you today with a head full of introspection and gratitude. Bear with me as I pontificate a bit. 🙂

It’s always a funny thing, driving onto the Anschutz Medical Campus.

For our family, this place holds a lot of history.

This is where Samantha received so much of her care. It’s where brilliant doctors tried to understand a little girl’s complicated mitochondrial disease and where we learned words and acronyms we never wanted to know.

Years later, this is where Ryan came for answers and care as mitochondrial disease began taking more and more from him.

And now, it’s where Cynde is fighting cancer.

So yeah…driving onto this campus hits a little differently for me.

Anschutz is a busy hub of people who are really sick. Behind almost every window is a family waiting, hoping for good news, sitting beside someone they love or trying to figure out what comes next.

But that’s only part of the story.

It’s also a busy hub of researchers searching for answers to some of the most complex diseases — cancer, mitochondrial disease, ALS, epilepsy and so many others.

It’s a place where thousands of doctors, nurses, researchers, therapists, techs and caregivers come to work every day and say, essentially, Let’s see what we can do.

There is something incredibly hopeful about that.

Maybe that’s why I always feel a tad nostalgic, weepy, hopeful and proud when I drive onto Anschutz.

Our family has experienced some of its hardest days here.

But we’ve also experienced extraordinary care here. We’ve watched people fight like hell for the people we love. We’ve benefited from science, research, medicine and people who have devoted their lives to making someone else’s impossible situation a little more possible.

Yesterday, they did that for Cynde.

Cynde did not have a great night last night.

She had some nausea, it took a while to get her settled into her bed, and someone checked on her about every 15 minutes.

BUT…

It was so much better than having a terrible night because she was in terrible pain. Or because her vitals were out of whack. Or because, because, because.

A very complex surgery went well.

Today looks good.

And I am grateful.

This morning, they laid out a plan for her to do some walking.

I thought, Well, that seems pretty aggressive considering you pillaged her belly yesterday.

But who am I to judge?

Here is Cynde, walking the hallways less than 24 hours post-pillaging.

And Pops and I got to complete the puzzle.

And today I am so stinkin’ grateful.

Grateful for an amazing surgical team.

Grateful that Cynde decided, from the very beginning, to face this head-on. That she decided she could do hard things.

Rest with a good blankey post walk!

Grateful that Pops has a little spark back in his eyes.

I will not lie to you. This has been hard.

I am grateful for good friends, a good therapist and a good hubs who held me as I kind of lost it — as I said out loud that this was way too much for my family. Way too much for me. As I looked to the universe and pleaded for just a pause in the trauma.

Maybe that’s part of gratitude, too.

It doesn’t mean pretending the hard things aren’t hard. It doesn’t mean we aren’t tired or scared or sometimes really, really angry about what life has handed us.

Maybe it just means recognizing the moments when the weight gets a little lighter.

Cynde still has a hill to climb. This is the beginning of a new chapter, not the end of the story. Her body needs to heal. We still have more rounds of chemo ahead, and then we will reassess.

But today?

Today feels like we can breathe a little.

Kiss the Phews on their stinky heads.

Walk the dog.

Laugh a little louder.

Finish a puzzle.

And revel in the seemingly ordinary miracle of walking the hospital hallways less than 24 hours after a very complex belly pillaging.

Today, I am so stinkin’ grateful.

Thank you, dear Tribe, for continuing to walk with us. ❤️

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Mid-Day Update:

On By HschichieIn blog2 Comments

Hello Dear Tribe:

We are six hours into this process, and things are looking good.

The surgeon came out and talked to us while the team was bathing Cynde’s abdomen in a nice, warm chemo wash. We have about two more hours to go before she is in recovery, but so far, so good.

Here is what we know…

Her cancer was pretty aggressive and had set up shop throughout her belly. The oncology team removed her ovaries, uterus, omentum, appendix and part of her large intestine. They also spent about an hour carefully looking for small tumors and zapping them with what I am calling their anti-tumor gun.

There are still a few tiny pockets of cancer cells that need to be evicted. We are hopeful the chemo wash today, along with her ongoing chemotherapy, will take care of those remaining areas.

How are we feeling?

Mostly, we are anxiously waiting for the surgery to be over and for Cynde to be safely resting in recovery.

But we also feel incredibly grateful that these first six hours have gone about as well as they could have. There were no unexpected surprises, and when we asked the surgeon how she felt about the outcome so far, she used one very important word:

“Optimal.”

Here’s to optimal.

We will take optimal ALL DAY LONG.

I will update everyone as soon as she is out of surgery and in recovery.

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Find Your Grail

On By HschichieIn blogLeave a comment

This is a big week for our family — and for you, dear Tribe, those of you who have embarked on this journey with us.

As we get closer to Thursday, and Cynde’s surgery, I promise not to leave you in the dark. I will consistently post updates here. I will let you know what I know.

And right now, I don’t know a lot.

Except for what I feel.

And that is that we are on high alert, waiting for Thursday.

Until then, there is life to be lived and moments to be had.

The family went to Spamalot yesterday. And when I say “the family,” there were about 20 of us in the audience trying to “look on the bright side of life,” searching for a shrubbery and keeping an eye out for murderous rabbits.

Ryan loved Monty Python and the Holy Grail.

As his disease progressed, Ryan’s speech could be pretty bad at times. He had a “talker” that helped him communicate phrases and needs. When he went into hospice, he asked the speech therapist to program it with phrases specific to palliative care.

His favorite was a button quoting The Holy Grail and “I’m not dead yet!”

He also had a button that said, “Ask my sister,” meaning me.

The button had a picture of a nun.

As in sister.

And if you know me…well, that sister/nun button was amazing.

It’s been six months since we lost Ryan. My lovely SIL decided we should celebrate and remember Ryski by going to Spamalot.

I think the timing was perfect.

The musical is completely silly, but tucked among the killer rabbits, Knights Who Say “Ni!” and general absurdity is a message that resonates:

Find your grail.

Last week, I sat in my therapist’s office and told her that nothing in my life feels solid or predictable right now.

She asked me what my anchor was.

I thought for a second.

“Walking the dog and swimming.”

“Do that,” she said. “And make it non-negotiable. Find a way to walk or swim every day. Make that your anchor.”

I’ve thought about that a lot.

Is swimming and walking the dog an anchor or a grail? Do I anchor or do I search?

Or maybe an anchor keeps you grounded while you search for whatever comes next.

Or maybe you start with small things that keep you tethered while everything around you feels uncertain.

Walk the dog.

Get in the pool.

Put one foot in front of the other.

Just make sure you don’t float away.

Or maybe I am thinking way too much about Spamalot.

But as we move into a big week, all of us are searching for that next step.

We celebrated Cynde’s birthday yesterday.

Before she blew out her candle, she looked around at all of us with resolve and said:

“You all know what I’m wishing for this year.”

We do.

And perhaps that is our grail right now…..a successful Thursday.

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Next Steps

On By HschichieIn blog1 Comment

Happy Friday, dear Tribe!

Please forgive another quick update, but I wanted to put everyone’s minds at ease so you can go enjoy the weekend. ❤️

We got good news today.

The surgical consult went well, and Cynde’s team is happy and optimistic about how she has responded to this first round of chemo. Most importantly, they feel good about moving forward with surgery.

Surgery is scheduled for Aug. 27 at 7:30 a.m. at Anschutz Medical Center in Aurora. It is expected to take six to seven hours, depending on what the surgical team finds. The current plan includes a full hysterectomy, with the possibility of removing additional intestinal tissue if necessary.

After surgery, Cynde will spend some time in a higher level of care — somewhere between a traditional hospital room and the ICU — so they can keep a close eye on her. Her total hospital stay is expected to be about four to seven days.

Recovery will take some time. She won’t be able to drive for at least a couple of weeks, depending on how she is healing and whether she is still taking pain medication. We are also hopeful that surgery will allow her to begin transitioning back to a regular diet.

In September, she’ll begin three more rounds of chemo.

If that sounds like a lot, it is.

But here is the part we are holding onto: Her team is very optimistic. This is the path they hoped she would be able to take, and they believe this is the best treatment plan moving forward.

So tonight, we are grateful. Grateful the chemo did its job. Grateful there is a plan. Grateful for an incredible medical team. And incredibly grateful for all of you who continue to surround Cynde and Pops with so much love.

One step at a time.

And remember…

We can do hard things.

Much love ❤️

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Sometimes You Need an Ugly Cry

On By HschichieIn blog1 Comment

Sometimes you need a good cry.

Not a tear or two that you quickly wipe away, but the kind that steals your breath. The down-and-out, ugly cry.

I’m a big advocate of the ugly cry.

Because life doesn’t stop. Laundry still needs to be done. Meals still need to be made. Bills still need to be paid. The dog still needs to be walked.

Meanwhile, grief waits patiently.

It has a funny way of showing up when you least expect it.

Lately, I’ve been walking my brother’s service dog. I love that dog and all of his opinionated little ways. He’s the slowest walker on the planet, stopping at every mailbox, light pole, stubby tree and random rock to investigate which dog came before him. Every stop requires careful consideration and, naturally, a signature mark of his own.

It can make for a very slow walk.

So I listen to music.

And sometimes, I cry.

Spotify has an uncanny ability to notice the one song that hits you right in the heart, then fill your playlist with ten more just like it.

Lately, that song has been Pink Skies by Zach Bryan.

There’s one line that undoes me every single time:

“If you could see ’em now, you’d be so proud.”

Most days it brings a tear or two.

The last few days…

It’s brought the ugly cry.

Because those words make me think of Ryan.

Last weekend, two of the Phews attended Camp Erin, a weekend camp for children and teens who have experienced the death of someone they love.

I’ll be honest—I have struggled with grief groups over the years. I wanted this weekend to be different for them. I wanted them to feel seen, understood and maybe even find a little joy in the middle of something so hard.

In true Phew fashion, they did exactly that.

They connected with their counselors. They played a lot of basketball. They drummed until their arms were tired. They laughed. They made friends. They were even interviewed by Jeremy Hubbard from FOX31. Bereavement camp hosts more than 50 Colorado kids to help them cope with grief

Watching the clips and hearing about their weekend filled my heart in a way I wasn’t expecting.

Because they are growing up.

They’re becoming remarkable young men.

Kind.

Funny.

Thoughtful.

Resilient.

If you could see them now…

You’d be so proud.

Nice job, brother.

You can find out more at: Shimmering Wings – Shimmering Wings Camp Erin-Denver

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Break Out

On By HschichieIn blog4 Comments

Happy Sunday, dear tribe!

I apologize for the late update. I escaped to Grand Junction this weekend with my sister-in-law and my Phews. Colorado has been hot and smoky, so we escaped to dear friends with a pool, a movie room, and what may be the world’s most powerful air conditioner.

Little did I know that while I was breaking out for the weekend, Cynde and Pops were planning their own jailbreak.

The weekend got off to a rather exciting start.

On Thursday morning I got a voicemail:

“Call us! We’ve had an exciting morning!”

I reminded them that details are important. Given the “excitement” we’ve had over the past month, I now end every conversation with, “May this appointment be really boring and uneventful.”

Excitement is a tad loaded for me. 😊

Thursday’s plan was simple. Cynde was scheduled to have a chemo port placed. It’s a fairly routine procedure that takes about an hour and makes future chemotherapy treatments much easier.

Except…

The night before, her TPN pump decided to go on strike. It stopped delivering the nutrition and hydration her body depends on. Since her nutrition is infused over an 18-hour period, missing eight hours is a pretty big deal. It throws everything off, including blood pressure and lab work.

Sure enough, when they arrived, Cynde’s blood pressure was too low to safely do the procedure.

Now what?

Chemo was scheduled for Friday, and without a port everyone assumed that plan was about to change.

While the doctors and nurses discussed their options, Pops asked a simple question.

“If she already has a central line, why can’t the chemo go through that?”

The room got quiet.

Great question, Pops.

After a few minutes of discussion, the team agreed. There really wasn’t a reason to place another line right now.

Victory!

One less procedure. One less opportunity for infection. And chemo could stay on schedule.

Cynde and Pops headed happily toward the parking lot.

They were halfway there when both of their phones started buzzing.

“Come back.”

“Your blood pressure is too low.”

“Please report to the emergency department.”

Fiddlesticks.

They dutifully headed to the ER and began the process of getting checked in.

Except…they really didn’t need another hospital admission.

What Cynde needed was a little nutrition, a working TPN pump, and some time for her body to catch up.

So they made an executive decision.

They broke out of the emergency room and went for an ice cream cone.

To be fair, “breaking out” was really more like:

“We don’t think we need to be here. We’re going to get an ice cream cone.”

Rebels.

The good news is that Friday’s chemo went much better than the first round, and for that we are incredibly grateful.

The chemo cocktail includes dexamethasone, a steroid that helps reduce nausea while providing a little extra energy and appetite. She may feel pretty good for a couple of days before the fatigue catches up.

But that’s tomorrow. Don’t borrow trouble from tomorrow.

Celebrate today.

If today is a day for an ice cream cone, eat the ice cream cone.

Tomorrow will take care of itself.

Today, we’re simply grateful.

Rebels.

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Gettin’ Wiggy With It

On By HschichieIn blog6 Comments

There is a quote that floats around the internet that says something like, “Losing my hair didn’t make me feel beautiful. It made me feel like a cancer patient.” I imagine that’s true for many people. Hair loss isn’t just about hair. It’s another reminder that cancer has arrived, and it announces itself to the world before you’re ready.

So here we go…..

This is a busy week for Cynde and Pops. On Thursday she’ll have her chemo port placed, and on Friday she’ll head back for another round of chemotherapy. Nurses continue to come and go, monitoring blood sugar, TPN, and her central line, but everything is moving in the right direction, the direction that gives her body the best chance to be as healthy and as strong as possible for treatment.

Tomorrow, Cynde meets with her hair stylist to talk about what comes next.

She’s always said she doesn’t want a wig.

But I also think we have an opportunity to have a little fun with this, because, Lordy…we could all use a little fun.

So we decided to imagine a few possibilities.

The Basics

What if we just embraced it? No wig. No pretending. Just Cynde- beautiful, striking, and strong. Add a colorful scarf, a cute hat, some fabulous earrings, and let her smile do the rest.

Then We Got a Little Creative…

#1 Soft Pixie #2 Sleek Bob

#3 Textured Pixie #4 Soft Layered Bob

And Then…Well…Things Got a Little Crazy.

The best part?

When you’re getting a little “wiggy with it,” you can be whoever you want to be. Cher one day. Meg Ryan the next. Maybe even Dolly Parton if the mood strikes. Whatever makes you laugh. Whatever makes you feel fabulous. Whatever helps you forget, even for a moment, why you’re wearing it in the first place.

This week is another big step in this journey. We’d love your healing thoughts, prayers, good vibes, and positive energy as Cynde heads into another round of chemo.

And if you have a favorite look from our little fashion show…feel free to vote.

Thanks, dear Tribe. ❤️

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HOME

On By HschichieIn blog12 Comments

I have thought about writing this post a lot; in anticipation of when we get to go home.

As our family has navigated chronic disease over the years, we have learned something that can’t be measured in lab values or scans: there is incredible healing in simply being home.

No matter how sick my brother Ryan was, he wanted to be home. For Samantha, home meant routine. It meant familiar sounds, familiar smells, her own bed, and our family together. We were always at our best when we were home.

So today, I am incredibly happy to write these four simple words:

Cynde is home.

That doesn’t mean home is without its challenges.

Cynde came home on TPN (Total Parenteral Nutrition), which provides all of her nutrition intravenously because cancer has made it impossible for her digestive system to absorb what she needs. TPN bypasses the gastrointestinal tract completely, but it isn’t as simple as hanging a bag of fluids. It requires careful monitoring of blood sugar, electrolytes, liver function, and signs of infection.

Because her digestive system isn’t reliably absorbing medications either, treatments like blood thinners have to be given by injection instead of by mouth. Hence, Pops is giving Cynde a shot 2x a day.

But they are home.

The view outside their windows is beautiful. The sheets are soft. There are no IV pumps chiming every few minutes and no monitors beeping through the night. Home looks different than it did a month ago, but home has a remarkable way of making room for life’s changes.

Pops sent me a picture tonight. Cynde is calm. She’s smiling. She looks comfortable. And right now, comfort feels like the very best medicine.

I also have to give a heartfelt shout-out to their incredible neighbors.

Neighbors showed up last night with a perfectly cooked ribeye steak, mashed potatoes, and several homemade meals—all carefully labeled and prepared with love. It should surprise no one that the ribeye and mashed potatoes disappeared first.

Later, Pops sent a text that perfectly captured the moment:

“I am so happy. I had a great meal from a lovely, unexpected source. Sometimes these times bring out the best in everyone.”

He’s right.

As the daughter, I don’t have the words to thank everyone who has reached out, sent prayers, delivered meals, checked in, or simply loved our family through this.

This diagnosis hit us like a wrecking ball.

To be perfectly honest, we are still grieving the loss of my brother, Ryan. Before we could even catch our breath, ovarian cancer entered our lives. The timing has been overwhelming, and there have been days when it has felt like the ground beneath us disappeared.

But then something beautiful happened…..and continuous to happen….

Our family, our friends, our neighbors, and our community stepped in. Again.

You have shown up with love, phone calls, hugs, prayers, and countless acts of kindness. You have cared not only for Cynde but for Pops, making sure he remembers to eat while he spends every waking moment caring for the woman he loves.

We will get through this. We know we can do hard things.

But it is so much easier when someone is walking beside you, holding your hand along the way.

Thank you doesn’t feel like enough.

But from the bottom of our hearts…

Thank you.

And to home.

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A Week Ago

On By HschichieIn blog18 Comments

I woke up this morning thinking about where we were just one week ago and how far we’ve come in seven days.

Last Saturday, Cynde was incredibly sick after Friday’s chemo treatment. She couldn’t keep anything down, so she and Pops spent the day in the Emergency Room searching for answers.

There really weren’t any answers that day, just an overzealous doctor who insisted she eat a Saltine cracker. Around midnight, after a frustrating standoff over that poor little cracker, they left exhausted, discouraged, and wondering what came next.

Sometimes these medical journeys have to get worse before they can get better.

Cynde’s angry Tum finally demanded the attention of exactly the right specialists, and that’s what it got. Aside from a couple of bumps along the way, her care has been exceptional. Every day has brought a little more progress, and right now, that’s exactly what we’re celebrating.

I also owe everyone an apology for disappearing after Wednesday’s update. I’m hoping we can all agree that when you don’t hear from me, it’s usually because things are quietly moving in the right direction.

So where are we today?

Cynde is getting stronger.

The TPN has allowed her digestive system to rest, and it seems to be making a real difference. The body wants to heal when we give it the chance.

And sometimes the biggest victories are the simplest ones.

She took a shower.

She’s walking the halls.

She’s sipping tea.

Then this morning they casually told me they were having breakfast together. Naturally, I assumed that meant Pops was enjoying pancakes while Cynde continued her gourmet TPN through her central line.

Nope.

She had scrambled eggs…and an English muffin.

Last weekend, one little cracker seemed impossible.

Today it was eggs and an English muffin.

All of this is about getting her strong enough for the next round of chemo because, in the end, it’s this stubborn cancer that’s causing all of these roadblocks. Her port will be placed on July 9, and chemo is scheduled to begin again on July 10.

I know this all sounds overwhelming, but her medical team continues to reassure us that, as difficult as this has been, none of it is unexpected with this type of cancer.

When I talked with Cynde yesterday, she said something that has stayed with me.

“We can do hard things.”

That’s what she wants everyone to know.

This is hard. And she can do hard things.

So we’re looking ahead to a possible Monday discharge. Home. Healing. One step at a time.

Thank you, as always, for your prayers, your messages, your encouragement, and for walking this road with us.

Happy weekend, dear tribe. ❤️

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No Soup For You!

On By HschichieIn blog3 Comments

I am a big Seinfeld fan, and sometimes my mind works in odd ways….when we talked through today’s update, my thought went to ‘No Food For You’! So I think you know where I am going with this.

Cynde’s tum is fighting a big fight. It seems like that is where her cancer cells have set up camp, making eating or drinking impossible. I started to type nearly impossible, but really, it is impossible right now for her to get the nutrition she needs through traditional means, i.e., eating and drinking.

And if you take eating and drinking (or the lack thereof) out of the equation, she looks really good. Cynde is committed to walking, standing, sitting up, and moving her body as much as she can. Side note, she pooped yesterday!!! YAY POOP!

But this tummy issue is a big one. And the doctors have decided to give her belly a rest while it fights this assy cancer.

You know what is really cool? Science and the time we live in. For the time being, Cynde will receive nutrition through a process called TPN (Total Parenteral Nutrition). TPN is nutrition delivered directly into the bloodstream through a central IV line; it completely bypasses the digestive tract. Although your tummy may rumble, saying it’s hungry, it is really your cells that need to be fed. TPN is the McDonald’s milkshake of intravenous nutrition. It contains:

  • Calories (dextrose)
  • Protein (amino acids)
  • Fats (lipids)
  • Vitamins and minerals
  • Electrolytes and fluids

The good thing is that she can go home on TPN. She will have a backpack that will deliver this complex nutrition to her hungry cells, which are eager to fatten up so they can get back out there and fight this assy cancer.

We want this fix to be temporary- the tummy likes to feel useful, and we don’t want it to get the impression that it’s not needed, but it might take a while. Instead of taking her to lunch, maybe go to a fabulous garden….ironically, flowers don’t have tummies either 🙂

Cynde moved out of the ICU today, and that was a win. Poop is a win. And having a team that acknowledges the best treatment protocol is also a win.

She also said she has been craving a big, icy Coca-Cola. This is funny because she is not a soda girl. I told her this will be her celebratory drink once she can have a sip or two.

Pops is good. After doing a tour of the hotels in Aurora, Hampton Inn, Comfort Inn, La Quinta, he has decided that the Hampton Inn is the winner, but there is no place like home.

To Home! For Cynde and Pops, let’s try to picture them back in Arvada, TPN backpack and all, watching the sunset on their beautiful patio.

Tomorrow, my friends.

PS- I’ve gotten a couple of questions about my WordPress site. Right now, you have to click on the comments section to see the comments. You can also follow my updates here. I am working on making the comments available under the post. Hold tight!