• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
Team Purple Firefox

Team Purple Firefox

Support Maria's Fight Against Pancreatic Cancer

  • Home

Family

Faith and Reason

June 12, 2022 by Adrian 3 Comments

The past week or so has been a roller coaster of emotions, of days starting out terribly and ending wonderfully, of despair and loneliness one hour followed by enthusiasm and community the next, of feeling normal and feeling anything but normal. Perhaps much of this can be attributed to “scanxiety” with Mom’s first big scan coming up, or perhaps this is just how we live now. Either way, it is going to require a great deal of faith to reason through this.

What the Heck is Scanxiety?

In an era of “new words”, this one is one that I like. “”Scanxiety” describes the apprehension felt by people with cancer as they wait for their next scan.”

The “scan” or the CT scan, is the medical tech used to discover cancer, and also used to determine if your current treatment is working.

All patients have complicated relationships with their scans not unlike the hate-love relationships we have with other technologies in our lives. We first learn we have cancer from scans, then learn from them if that cancer has shrunk or disappeared, then learn if it has come back. Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.

– Excerpt from Scanxiety by Bruce Feiler

Mom has a scan scheduled for tomorrow. This is the first scan she’s had since the diagnosis.

We are all rather obsessed with it. Reason would dictate that there is nothing to be anxious about; either the results of the scan will be great (the tumor shrank!) or the results will just be news (we need to cointue this regime, or modify it).

There is no real “bad” news at this point, but try convincing yourself of that when it is your mother, or worse, when it is you.

Scanxiety has been haunting us all week, and the stress has been mounting.

We go for the scan on Monday, and we meet with Mom’s doctor on Wednesday to review.

Again, there is only Good News or News, but, well, reality is different. We feel like, reasonable or not, we are waiting for a report card, or SATs, or the results from a job interview. I don’t know. Anything but routine.

Does scanxiety cause you to buy and use a tool to “shave” your couch? Maybe…

It is oppressive, and we are all feeling it, and feeling it pushing us in directions we don’t need to go. Mom’s symptoms are increasing in severity; is it manifesting from the scanxiety? My sisters and I are feeling some burn-out; is it from the scanxiety? Mom and Dad keep uttering fatalistic things and hyping this up as “all or nothing” even though it is not; that is definitely scanxiety.

Everyone thinks it can be fought off with reason; we all KNOW it is not a climatic moment. But what about ANY of this is reasonable? My mother’s body is growing something it shouldn’t (what?) and the thing it is growing might kill her (um, what??) and the best course of action right now is to administer poison to Mom in a controlled environment and hope she can tolerate, and then hope the growth can not tolerate.

What about any of that is reasonable?

How do you process a situation like this, so far outside of reason or fairness, and then expect to be able to apply reason at some of its most powerful moments?

We have started to realize the effect it has had on us this past week, and have started some new strategies to mitigate it.

Ultimately, we just have to get it over with; the scan is tomorrow, it is what it is, and we will deal with whatever comes.

Reason is a great tool, but sometimes you need to lean even harder on faith.

The Jesuits, Mom, and Me

I was raised Catholic, in a large Catholic family. My ancestors came to this country from very poor countries, like Poland, Italy, and Ireland, with little to nothing to their name except their Catholic faith. I stopped participating in the Church in the early 2000s, for many of the same reasons many people stopped participating in the Catholic Church at that time; a few years ago, for reasons that make a story too long for this post, I felt called back to my faith. I felt certain about my spirituality, felt certain about my beliefs in Christianity, but still felt less certain about embracing Catholicism again. I hovered over the idea of participating in a different version of Christianity; I had ties through community and volunteer work to some other Christian churches in the neighborhood, and one in particular had a pastor that I really felt a connection with, but ultimately, I felt an ancestral tug to keep to the faith that my long-past relatives carried with them on decrepit boats when they crossed the Atlantic for the New World.

Still, even that was not enough, until I came across a particular priest on social media, one Fr. James Martin SJ. Everything this man said was aligned with my beliefs; everything this man questioned about the Catholic Church was aligned with my questions. He is relatively famous now, as a prolific author and a popular consultant to Hollywood and Broadway on all things Catholic, but he remains sincere. He is a local boy, having grown up in the Plymouth Meeting area and having attended Epiphany of our Lord Church (which, not for nothing, is a church I went to often whenever I stayed over my best friend’s house and his mom, my Godmother, took us to Mass).

Fr. Jim became a bridge for me back to the Church. And the more I connected with him and his teaching, the more I found hope in the philosphy of his order, The Society of Jesus, or The Jesuits. Like Catholicism, and many religions and religous orders, the Jesuits have a speckled (and sometimes horrific) past; however, what they stand for today is what I stand for, and their vision for Catholicism is my vision for Catholicism. It was by the example people like Fr. Jim, and even Pope Francis (also a Jesuit) that I started going back to Mass.

As soon as I started going back to Mass, Mom wanted to go with me. It was not long before we had a regular time (9 a.m. at St. John’s), a regular parking spot (get there early to get it), and a regular pew (definitely get there early to get it). Often after Mass we would go to breakfast, sometimes with the rest of my family, sometimes with just me.

It was not long until the rest of my immediate family starting attending Mass again, and since then my two oldest children have received all of their sacraments and my two youngest will receive their next Easter.

Mom stood as God parent to both of my older children, and fully participates in anything St. John’s has going on that fits our family schedule.

To suggest that this return to faith of so many people is directly related to a couple of Jesuits sounds trite, but, well, that is what Jesuits do. At least, that is what they always intended to do.

One area where Jesuits have embedded themselves in my life over the years is in music. Growing up in Catholic school, we often attended Mass as a student body, and often the music in those masses were led by Nuns with acoustic guitars; the image of a Nun in a full IHM habit tossing their silver crucifix over their shoulder so they could slide the rainbow guitar strap over their head and start strumming some catchy music is one that I still hold warmly. As it turns out, a lot of my most treasured church music from that time was written by a very unique group of Jesuits who, after Vatican II, took it as a calling to create new, folk-style music for the Catholic Church, music that was catchy and accessible by the people. They were called the St. Louis Jesuits and their tunes still resonate to this day.

The reason we go to the 9 am Mass at St. John’s is because they still have a guitar group there. While not Nuns (I don’t think?), one of the players as been doing it for 48 years. I feel a strong connection when they play, and espeically when they play songs from the St. Louis Jesuits.

Since Mom’s diagnosis, we have not been going to Mass together. I have been afraid that it would be too much for her, so she would watch the streaming service, and I would go alone. However, I was struggling to go without her, as it only seemed to amplify the worst parts about what was going on. Mom would religously (pun intended) watch the streaming service, but, that is just not the same.

Better than nothing, but not the same. Not normal.

This past weekend, a confluence of events made my sisters and I think about the importance of “normal”, of trying to find ways to keep Mom connected with the activities she enjoys the most.

Of course, this sounds obvious, but the pull to circle the wagons and protect is strong. The desire to control things and manage things and reduce all risk at all costs is overpowering at times.

It is not reasonable, and it is certainly lacking in faith. But I think it is a normal response.

We are so hyper-focused on getting to chemo and getting through chemo and getting ready for the next chemo that, maybe, perahps, we were ignoring the value in the everyday.

A few days ago, on Friday, I attended a funeral for the mother of an old friend. This was a woman that went to school with my mother, and whose daughter went to school with me. The woman was a “lunch mom” at our gradeschool, and spent so many afternoons with us dispensing tough love and wisdom. Beyond all of that, as a kid I would often play hockey in the lot across the street from her house, and without fail, she would pull up in her big panel van and drive me and all of my friends home so “we could get home in time for dinner that our mothers were sweating over.”

Mom was conflicted about going to the funeral; I talked her out of it. I told her I would bring back a Mass card. I went, I saw my friend there, devastated. Her mother’s death was sudden and jarring and would take a long time to even approach healing. Also there were a few of our mutual friends, some from gradeschool.

As the service go underway, I looked at the pamphlet, and saw to my joy that all of the “funeral classics” were going to be sung: “Be Not Afraid”, “Here I Am, Lord”, “On Eagle’s Wings” and more.

These were all songs we sang in that very church when I was a child, and I would be singing them again in that church, with some long-time friends of mine from that church’s grade school, to honor a woman who volunteered her time to help raise me in the schoolyard of that church. All of these songs were written by the St. Louis Jesuits, and they were all my favorites.

To say the whole experience made me think of my own Mother, from the darkest possible thoughts to the warmest and most joyful thoughts, is an understatement. But, I had advised her not to come. I wished she was there, and she wished she was there.

And those songs: Was I being afraid? Was I answering the call that I was hearing? Was I embracing the faith that everything would be OK even if things in this world did not turn out OK?

Good questions.

By Saturday, my sisters and I all arrived at the same answers: we needed to embrace the opportunities to be with Mom in her “normal” activities as often as possible; in fact, we need to push and encourage them to happen. Of course Mom could go shopping with us regularly; of course Mom could go to Church with me; of course we could make sure to facilitate those things as safely as possible.

Alia took mom right out shopping, and they had a great time.

I asked Mom to join me at Mass today, at the 9 am Mass, and she was so excited. I told her I would pick her up at 8:30, and when I got there at 8:20, early just in case she needed help, Mom was already standing outside in the rain, with a new fancy umbrella, looking all made up and beautiful, and ready to go.

“I just love summer rain,” she said as we got into the car.

Mass was beautiful. Monsignor Kevin Lawrence is, as I have stated before, just wonderful. If it was Fr. Jim that helped me walk back through the doors, it was Msgr. Lawrence who made me want to keep coming back each week.

The guitar group played today, and before the end of Mass, it was announced that it would be their last Mass until the fall, as they take a break during the summer.

I was so glad we got there today! And as they announced the closing hymn, another St. Louis Jesuits classic “Though The Mountains May Fall”, I smiled deeply and I sang loudly. It is absolutely one of my most favorites, it is one we sang so often in grade school, and it is one whose lyrics were exactly what Mom and I needed to hear.

Should you turn and forsake Him
He will gently call your name
Should you wander away from Him
He will always take you back
Though the mountains may fall and the hills turn to dust
Yet the love of the Lord will stand
As a shelter for all who will call on his name
Sing the praise and the glory of God

It is a song about faith, about joyful faith even in dark times, of losing faith and finding it again, of believing that, no matter what happens, everything will be OK.

After Mass, Mom and I drove to Marchiano’s Bakery and to T&F, to get supplies for Sunday Dinner, which Mom is planning on cooking most of; Mom did all the shoping, I carried the bags. It felt like one of those “normal” days from back before Mom got sick, to just another Sunday in June that started with Mass and would include good food, family, and talk of upcoming vacation plans.

Everyone draws strength from different places; I hope that my sisters and I, our families, my Dad, and especially my Mom, along with everyone supporting us and Mom, can continue to seek out and find sources of strength.

And that we all remember that joy of a single, sunny day, a day where you are doing the things you love with the people you love, can sustain you through many dark hours.

Alia and Mom, getting out to the track from some sunny exercise.

Filed Under: Family, Update

A Few Days to Reflect with Gratitude

May 31, 2022 by Adrian 2 Comments

Memorial Day weekend can mean a lot of different things: from its humble origins in Charleston, SC, by a Black community wanting to honor those who gave their lives during the Civil War for the cause of Emancipation, to our modern inclusion of showing gratitude to all those who lost their lives in conflicts for our country, to a 3-day weekend at the beach and lots of appliance sales.

In our family, Memorial Day has always launched the Summer Season. We often went to the cemetery to decorate graves or participate in some service, but we always had a party. Mom and Dad traditionally held an annual BBQ in the backyard, especially when a pool was back there. Mom has memories of her mother grilling food in the rain with an umbrella; I have memories of my uncles, young and in their physical prime, wrestling and goofing off in the pool.

While those halcyon days are long past — the beloved pool has been gone for decades, and I am older now than my uncles were in my memories — we still manage to do a little something to mark the holiday.

This past weekend was no exception; Mom was back in the green and feeling great, all of her sisters were in town, her Goddaughter was getting married, and even without the pool, the backyard still has a little magic on warm summer evenings.

Sister Act

One of Mom’s most extraordinary things in her life is her sisters; she is one of six! When they come to visit, I perceive Mom gets unmatched energy. Four of them live in the area, and one lives in Arizona. When all six are around at the same time, it is extra special.

Since the initial diagnosis, Mom’s sisters have been at her side: bringing food; stopping by for long visits; sleeping over; calling and texting; quietly buying this or leaving some money for that; taking Mom out to breakfast; responding with calm and grace to emotional texts from me or my sisters. The support, the phone calls, the texts, the thoughts and prayers. They have done so much to help Mom feel normal.

As soon as the news broke about Mom’s cancer, they organized an overnight trip to the beach for all six of them. They had a blast.

All 6 Sisters
The Esposito Girls

Along with her best friend, my Godmother, they are the people who have known Mom the longest. They are the ones who have witnessed most of Mom’s life. They are the ones who have been showing up to help in more ways than I can write about.

Mom’s sister from Arizona flew home this morning but will be back in a few weeks for an even longer stay. Mom’s sisters here in the Philadelphia area will, I am sure, continue to show up and help in any way they can.

They are all the best. Mom’s sisters, my aunts, have always been an enormous part of Mom’s life and, in turn, a massive amount of mine; I am, and forever will be, grateful for all they have done for my Mom during this time.

A Long-expected Party

The primary reason all six sisters were around this past weekend was to celebrate my younger cousin’s wedding, my Mom’s Goddaughter. The wedding was postponed not once but twice due to COVID, but the happy couple persisted and finally had their special day.

Going to the wedding was a big goal for Mom. While there were days that seemed like attending would be impossible, Mom rallied with a string of green days. With the help of her sisters and my older sister, Mom was able to show up looking beautiful and feeling great. Hair was done up, a fancy dress was on, makeup was applied, and Mom had a wonderful time. Mom’s fatigue kicked in, and she could not stay for the whole fabulous party, but it was enough to see the nuptials performed and get some memorable pictures with her niece, namesake, and Goddaughter.

Aunt Terri, Mother of the Bride, and Mom
Aunt Diann, Mom, and Aunt Jeanne
Aunt Jeanne, Aunt Diann, Mom, our beautiful bride Maria, Aunt Terri, Aunt Judy, and Aunt Joanne

I am ever so grateful that my cousin could have her big day, and that it all turned out beautifully, and most significantly, that my Mom could be there to witness it.

Family, Sun, Dogs, and Hot Dogs

My older sister was down for most of the weekend, and together with my Aunt, they took care of most things from last Thursday through Monday. Even though I stopped by each day, I took a much-needed respite and was able to hang out at home and take care of some personal business, including seeing both of my older children off for a multi-week trip to Greece. There are no “off” days!

We ended up having a family and food-filled weekend, as usual. My Dad’s sister came over with lots of fried chicken on Sunday, and my older sister made even more fried chicken and brought her two beautiful dogs to visit. We all hung out in the backyard, and Mom was feeling great. The dogs were a treat, the weather was perfect, and the afternoon slipped into one of those hazy and lazy evenings where you lose track of time like only summer can do.

Good Dog Lilly and Mom, chilling on a backyard bench where the pool once was.

Some of the neighbors were having a larger party, and the smells from their grill were terrific. My Aunt became very excited about what had to be hot dogs grilling over there, so on Monday, my family and I (minus two travelers) came back down for some classic hot dogs and hamburgers. Some old photo albums came out, and there was much reminiscing.

One of my Mom’s best pieces of advice — one that I cling to as much as any other — was this: if you don’t make the holidays special, they just become like any other day.

I am grateful that I grew up in a family that always took time to mark the special days of the year, even if the customs and the meanings changed over time. The memories are thick.

And I am grateful to have had this wonderful weekend with my Mom, surrounded by so many wonderful people, where we could pause for a few moments and reflect on what a wonderful family we have.


A special thanks to my older sister, Angella, for taking all of the photos; without her, there would be no photos, because I am lazy.

Angella and Mom

Filed Under: Family, Update

It’s Been A Roller Coaster

May 16, 2022 by Adrian 3 Comments

Hello, faithful Purple Firefox readers. It has been too long since the last update. Time has been very slippy. We are realizing that not only is there no pattern to how Mom is feeling, but also that this is going to be a really, really long battle.

A week goes by and it feels like a day. Mom has a couple of bad days and it feels like she has been struggling for months. Mom has a good day and it is hard to remember how bad it was.

And then I remember that I have not held up my end of our agreement, dear friends: I write, you read.

Well, buckle up, because I have some stories to tell, some changes we are going to make here, and some updates on Mom.

Daily Updates

Part of the reason for creating this blog was to document Mom’s experience, not just as a way to share what is going on, but also to be a resource we could use to look back over previous weeks as reference points.

Well, that is a great idea, but it does require some consistency in posting. And even though, as you may have realized by now, that I do enjoy writing, there are days when the emotional exhaustion is so much that I just can’t. I don’t feel like going through the process that I go through to write things. Sometimes it’s all I can do just to answer texts about Mom.

So, I am developing a middle ground. My wife and I both came up with an idea about the same time: what if we created just a simple, color-coded way to show what kind of day Mom had, with maybe a few notes, and I posted this every day. Assumedly, it would only take a few moments, and if I missed a day or two, I could go back and catch up easily.

Then, you could all at a glance see how things are, and we could visually look back and review weeks or even months at a time to remember just how many good days Mom has, and how they fall around her chemo days. Perhaps there is something to be gained; at a minimum, Mom could, on a bad day, see that she has had a lot of good days. Talking about that seemed to help a bit this past week.

I am thinking of a simple Green (Good Day!), Yellow (Meh), and Red (Bad Day) system, using icons like this:

Yay!
Meh.
Boo!

I am going to go back over the days we have clear notes on and update each day with one of these icons. Maybe it will be nothing but the icon. I’ll try to add some context and notes. Or maybe I will make it into a calendar. I don’t know yet, but we will be rolling this out in the next couple of days.

We’ll see how it goes.

Best is Best

I went to Confession this past Saturday. I had missed Mass a few times over the past weeks, and I was also struggling with some other things, specifically with anger. I am not going to lie: this whole thing does piss me off on the regular. How could it not? But sometimes that anger seems to overflow. The priest, whom I did not know, gave me some great advice, but for my Penance he said this: “For your Penance I am asking you do something really easy, that is also quite hard. In your own words, pray to God for the Grace to realize what is the best you can do in any situation — no more, no less. And then pray to God for the courage to do just that.”

I don’t know exactly why, but it really resonated with me. Do Your Best is also the Cub Scout motto that I reinforce with my Cub Scout Pack each Friday night. You don’t have to be perfect, or even good at something — just Do Your Best.

It’s simple advice, though it is hard to accept, especially when your best might not be what everyone else expects or wants from you.

Growing up in this house, with Mom working shift work as a nurse and Pop working shift work as a police officer, there were two things that were always on: the coffee pot and the TV. Mom, like me, really enjoys watching comforting shows over and over and over again. When exhaustion and stress peak, sometimes just mindlessly following along with a show that you love can be a great escape.

For Mom, for many years, that show was M*A*S*H. She loved it, Pop loved it, it was always on (either on syndication on TV, or one of the many 8-hour VHS tapes we had with episode after episode, season after season). And, so, I loved it. I still do.

One of my favorite episodes is “Dear Sis” (S7, E14), where it is Christmas time, and everyone is depressed to be in Korea, in the middle of the war, especially the outfit’s chaplain, Father Mulcahy, who feels he is not making a difference. At one point, when wounded soldiers arrive, Father Mulcahy tries to calm a soldier on a stretcher awaiting treatment. The soldier, frustrated, punches him, and Father Mulcahy, a former boxing coach, punches him back. Father Mulcahy is devastated. He immediately regrets his actions and feels tremendous guilt.

Eventually, Father Mulcahy breaks down, and says amidst tears to Hawkey: “I am supposed to be Christ’s representative!”. Hawkeye responds with, “All you can do is your best.” And when Father Mulcahy says “Some best!” Hawkeye answers, “Best is best, father.”

The episode ends with a tremendous scene, and while I won’t spoil any more here, it is so good I watch it every year at Christmas time. It might be my favorite episode.

Father Mulcahy, like all of us, is human. Just a person. Sometimes we all fall short. Best is best.

Was I compassionate to everyone around me at all times these past few weeks? Nope. Did I remember to get Mom’s prescription refilled on time? I did not. Did I post here as often as I wanted to? Not in the least. Did I show up for every commitment I had, or meet every work deadline, or respond to every email and text I should have? No, no, no, and no.

The stress is real. The exhaustion is overwhelming at times. The hair is turning gray. A month ago feels like a year ago one second, and it feels like a few days ago the next second.

What can we do?

Best is best.

(I still fee bad about that prescription though.)

So How Is Mom Anyway?

I know you are here for the details about Mom. I want to make sure that you are getting your money’s worth.

The last time I posted, we had just wrapped up Chemo 2 on May 4th. Now it is May 16th, and Chemo 3 is tomorrow.

So how have things been?

Most days are mostly good, some days are great, and some days really, really suck.

When Mom came home from Chemo on that Wednesday, we started a string of great days. Mom’s sister was visiting from Arizona, her nephew was visiting from Georgia, and Mom was feeling great.

By Mother’s Day, Mom was feeling so incredible that it took our breath away. My sister Angella posted the following on the Purple Firefox Facebook Page:

Happy Mother’s Day to you all!!!!

What an amazing day with my beautiful momma! Second round of chemo is over and mom is doing amazing! She is busy tending to all of her plants and fixing up so things are exactly where she wants them, she is having a wonderful day ❤️.

She has an appetite and food is smelling and looking good to her again! She is making omelets this morning- what a difference from round 1.

She has a ton of energy and is smiling and singing, I am amazed at her strength. She sat on her beautiful porch this morning and said, “What a wonderful day to be alive”.

Everyone has made this possible with all of your love- thank you for being part of “purple firefox”, I wanted to share my thanks and love to you all, TODAY IS A GREAT DAY!

— Angella McIntyre, May 8, 2022

It was, perhaps, the best day yet. Mom looked, and felt, so healthy, so herself.

We were all especially excited because we had made it past the point in the first round of chemo that Mom had bad days, so we thought we had made it!

Mother’s Day 2012: Me, Mom, and sisters Alia and Angella: three of the best moms I know.

But the rest of the week?

My mom’s sister, my Aunt Jeanne, has been consistently warning us that one day will not predict another day, and that we have to be prepared for every day to be its own day: maybe better, maybe worse.

But we had a pattern! Last time Mom felt bad after *this* day, so surely if we could get past *that* day this time, we would be in the clear. This is how my brain works. I *want* there to be a pattern. Was there?

Nah.

Monday and Tuesday were OK… Mom seemed a little tired, but it was a busy weekend, and the steroids were drawing down.

We had an at-home nurse come and give mom IV fluids twice this week, which seemed to help, but as the week went on, Mom felt more and more down.

By Friday, Mom was definitely in the weeds. Fatigue, pain, nausea, grumpiness.

By Saturday morning, it seemed like Mom crashed. Despondent. Unable/unwilling to eat. Pain. Exhaustion. Mom was scared, we were scared.

My sisters and I started scrambling, seeking something we could do, some new plan, some new action. We feared Mom was going to want to stop and, while we will support her with whatever her choices are, we didn’t want to leave any stone unturned.

We sat down with Mom and had a long talk about options, about things she could do, and things we could do if she needed more help. Either way, Mom needed help to eat more and to manage her pain — things could not continue as they were.

We reached out to Aunt Jeanne (a nurse with a ton of experience) and to my mom’s best friend, my Godmother, my Aunt Ellen (also a nurse with a ton of experience). Both had perspectives and advice that helped. Aunt Jeanne came down Saturday night to sit with mom and help, and Aunt Elle came down and sat with Mom Sunday morning and talked through some options.

By Sunday afternoon, Mom had really turned a corner and by Sunday night was full of energy and enthusiasm.

When I got here this morning, early, to help mom with breakfast before she left with Aunt Jeanne to get lab work done, I found mom up and dressed and already made herself food and ate it. Later in the morning I went to remind her to take some meds, and she had taken them already, had already eaten again, and was out in the garden with a shovel digging up and replanting stuff.

Is this a new pattern? Probably not; surely Aunt Jeanne would say it is not, and she has not been wrong about that. But, it is a great day.

Now we wait for the lab results to come in, to see if those white blood cells are high enough for chemo 3 tomorrow.

And I await the pharmacy to call and let me know that script is ready.

We are all doing everything we can, especially Mom. It is all we can do!

Best is best.


Wanna help?

Don’t forget: It is chemo week (probably), and while we have lots of family scheduled to sleep over to help, the most helpful thing is the Meal Train.

If you are able and willing to whip up a meal for some night this week, my mom and my family would be so appreciative. I can’t tell you how wonderful it has been the night’s that people have brought dishes over and we could just be with mom and not have the prep and cooking and cleaning to do that night.

There are days available this week and next: if you are up for it, please hop on the Meal Train!

Filed Under: Family, Update

This Is Your Gravy

April 26, 2022 by Adrian 2 Comments

Mom always held us to a high standard at school; she expected that we would excel, but demanded that we not leave any easy points on the table. Now the tables have turned.

“This is your gravy,” Mom would say, at times exasperated. “You have to do ALL the little things, the stuff you can control. You have be 100% at that stuff.”

Gravy, in this sense, was anything that was connected to our academic work and was easy to do. 20% of your grade was based on attendance? Then you never, ever miss a class, because that 20% is gravy. 50% of your grade is based on turning in weekly homework? For the love of god you turn those in every. single. week. because that 50% is gravy. Extra credit is offered? Take it, always, every time, because those points are gravy.

Mom expected my sisters and I to be excellent students and, for the most part, we were. Both of my sisters are really, really smart… almost as smart as I am. Just kidding — it’s not that close. But they are still super smart. 🙂

From grade school on, when it was report card time, anything that was not an A was going to be an issue. Mom’s dad, my grandfather, paid cash money for every A, so for me, the motivation was clear: get as many As as possible and go see Pop-Pop to get paid and then go to Clover to spend it.

Sometimes, an A just did not happen. If the effort was there, it was not a huge issue, but it was also understood that my primary focus in life would be to get whatever was not an A back to being an A.

However, if I did not deliver an A and it was because I lost points on attendance? Or I failed to turn something in on time? I didn’t take care of my gravy? Well, now we had a serious issue. Unacceptable. Punishments. Groundings. Surrender of Nintendo.

My parents did not punish us much (at least I was not punished that much), but if I brought home a B in a class because I didn’t do the extra credit or I missed a couple of weekly assignments? Well, then I was on the wrong side of the law.

Mom didn’t just talk the talk, either. When she went back to nursing school in the early 80s, we had a full house with a menagerie of pets. Dad was a Philadelphia police officer working all 3 shifts back then, we were all in Catholic school, and the family demands were high.

My Pop-Pop told my Mom he expected her to finish first in her class, and so that is what Mom set out to do. From a makeshift desk in an unfinished basement, surrounded by laundry that was never fully finished for the 3 years she went back to school, Mom attacked school. And after those 3 years, at her graduation, she achieved her goal: Mom finished first in her class… by just a couple of decimal points.

Just a couple of decimal points. Her name is on a plaque somewhere at the nursing school, and it is on there because of just a couple of decimal points.

You had better believe Mom knew this was because of gravy. One missed assignment over the course of the 3 years, one absence, one lazy moment, and Mom would have placed 2nd.

That was the standard we were held to; that was what was expected.

Now, here we are in this awful situation of the moment: pancreatic cancer. Chemo infusions. Appointments. Lab work. Test results.

There is so much that Mom cannot control, so much that none of us can control.

But there are some things we can control.

There is some gravy here.

Mom’s white blood cells were too low yesterday and we could not get the scheduled chemo infusion. This is due to the chemo mom received 2 weeks ago; the regimen she is on is the most aggressive (read: harshest) regimen a person can be on.

From the provider’s perspective, a delay in treatment, even a lowering of the dosage, is totally normal and expected; they start with the strongest dose and then dial it back as needed.

From Mom’s perspective, it was disappointing. Honestly, it was a bit disappointing for all of us. It was a let down. We were prepped and ready to go, and then we couldn’t. It felt like a step back, even though our provider assured us it was most definitely NOT a step back, but an expected part of crafting Mom’s treatment.

OK. Fine. But things feel how they feel, and initially at least, it felt bad when we were told after labs that Mom could not get chemo yesterday.

They want Mom to take an extra week, to eat well, to get lots of protein, and to get her white blood cell count back up. They are going to make some slight modifications to Mom’s treatment to account for the white blood cell count, as well as some other symptoms. But Mom’s job right now is to get the white blood cells back up. To eat, and to eat well.

Eating has not been easy so far. The first week after Mom’s first chemo was a struggle, and Mom lost a bit of weight. The second week was better, and Mom put some weight back on.

Now we have this extra week, and it is gravy. The extra credit assignment, the take-home test, the attendance points, are all just this: Mom needs to eat, and eat well, all week.

Today was off to a good start, with a lot of healthy food all morning and Mom and Dad off for a nice outdoor walk at the arboretum.

My brilliant sisters and my wife, as well as all of our wonderful Aunts and neighbors, are concocting all sorts of good things for Mom to eat.

Just saying: if I never say or hear the word “protein” again it will be OK.

Whatever Mom can enjoy eating, that is what we need to be seeing her eat.

Mom’s kitchen has always been a magical place; I am sure we can make this happen.

Pass the gravy, please.

Filed Under: Family, Update

We had a Wonderful Easter

April 18, 2022 by Adrian 3 Comments

What a difference a day makes. A day, some IV drugs, and some sleep. Easter Sunday was wonderful.

Saturday’s hospital adventure saw Mom back home around dinner time.

Originally, Saturday was planned to be a special night; my daughter Mia had completed her RCIA program and was to be Baptized, Confirmed, and receive her First Holy Communion at Saturday’s Easter Vigil Mass at St. John the Baptist Church, and Mom was to be her Sponsor / Godmother. As Mom was leaving the hospital, she was checking her watch to see if she could still make it, but we had already moved on to Plan B; Mia’s instructor stood in as Mom’s proxy sponsor, and Mom settled in at home and watched the live-stream of the service with Angella and Alia.

Just before Mass ended, Monsignor Lawrence took a few moments to recognize the new members of the church, and to thank their instructors and sponsors, and then gave a shout out to Mom specifically, stating that he knew she wanted to be there, and then she was sick and asked the church to continue to pray for her.

It was a really nice moment.

Monsignor also mentioned me, that he knew I also wanted to be there, but surely I was at my mom’s bedside. I was — in spirit! In actuality, I was back at my home, with my other kids, watching the live-stream on my iPad, recovering from the previous 24 hours of being at Mom’s bedside. I spent the 2.5 hours during the Mass cleaning up the house and getting ready for the Easter Bunny to come, as all of that still needed to happen of course. Our youngest very much expected the full Easter show, and while we had planned for all of us to go to Easter Vigil, he has become unsettled this past week with all of the changes and the chaos. We knew there was no way he could handle a long Mass at night, so we split up, and my wife Angie Rae took Mia for her big night.

Both of my amazing sisters messaged me separately to let me know that Mom got to watch the whole thing, and that Alia and Mom held hands during Mia’s Baptism.

On Easter Sunday, after baskets and our annual “egg hunt in the house” and pancakes with my whole fam, I went to Mass by myself. Mom is my usual partner in church during the early Mass on Sundays; this time I went to the later service (11am) alone. It was an amazing service, as Monsignor arranged to have some trumpet (!) players accompany the organ, and it was spectacular. Breathtaking. (If you are Catholic, and you know how we don’t sing the “Gloria” during Lent, but start it again on Easter; well, with the trumpets, it was just awesome).

Mom would have loved it.

By early afternoon all the families were gathering at Mom’s, and even if some of the grand kids had other commitments during the day, they all stopped in for at least part of the day. One of Mom’s sisters was there with her husband when I arrived, and one of Mom’s good friends and her husband stopped in after dinner.

Lila and Mom
Leif, Mom, and Ben
Me, Mom, and Angie
Kayla and Mom
Mia and Mom
Sarah and Mom
Some of us from Easter; there are more pics. Going to set up an album here on the site.

We had 25 people in and out all day, with most staying for most of dinner, which was fantastic. Both of my sisters had set the table the night before and had most of the food (ham, some bakes, etc) prepped and my wife made up a wonderful salad and grilled some vegetables. Aunt Janine brought some food, and we had acquired some babka and Easter bread and kielbasa from T&F the day before. That plus some kielbasa from Port Richmond and some pound cakes from Stocks that some close friends dropped off on Saturday morning led to an incredible feast.

I reheated some breads from Marchiano’s for appetizers and quickly got in the way and was making a mess trying to slice them up so I got out of the way. I was still feeling a little out of sorts from the day before, I guess, or just tired and lazy maybe. Anyway, Angella made the mashed potatoes that I had volunteered to make and, well, it all worked out. It takes a village and all of that.

Mom was so pleased with the big, full table, and with all of the people, and her spirits were high. She was able to eat some — especially the mashed potatoes — and seemed to really enjoy the day.

As we were finishing cleaning up, she was buzzing about, wiping things down, directing where things should go, re-making the table for regular use. It seemed like normal Mom after a normal Sunday dinner.

We all went home and Mom and Dad took charge to manage Mom’s care through the night. This is the off-week between chemo sessions, and we have hope for some easier nights and some more “normal” days this week. Angella had slept over Saturday night after the hospital and we came up with a new plan for Mom’s meds that should be easier to manage — at least on these off-weeks.

Angella, Alia, and Angie Rae have done so much to cover all of the bases and keep all of this complicated stuff so well organized… but we could all also use a break. This was a tough first week, but we also know this is only the beginning, and we need to pace ourselves. Mom’s care is a marathon, not a sprint, and all of those sort of cliches.

The Med Cart — Alia’s daughter Lila’s idea, and organized by Angella. They have everything in one place — wonderful!
The Med Cups – Angie Rae’s idea to keep us on schedule (Thanks Panera!)
Angella, Alia, and Angie Rae crushing it on the med plans.

Either way, we all felt like it would be good for Mom and Dad to have some space and some autonomy and manage some of this on their own. And since I am working from one of the empty bedrooms in the house, I would be over early to get the day going.

I went to 7am Mass this morning by myself, and Monsignor reminded us that the Church gives us an Easter Octave, or 8 days of Easter, where each day we are to celebrate as if it was Easter, so daily Mass is in the big church, and all of the decorations and flowers are still in place. I am hoping Mom is up to joining me later in the week for one of these services; they are short, but I think it will be nice to participate in Easter, even if it is only one of the “extra” Easters.

I got to Mom’s house around 7:30; she said she had a good night and got a good bit of sleep, and just had some mild symptoms this morning.

When I walked in, I heard Monsignor Lawrence’s voice echoing through the house; Mom was sitting up in the living room watching the recorded stream from Sunday’s 11am Mass.

“I wanted to hear those trumpets,” she said.

Amen!

Filed Under: Family, Update

Round One About Done

April 14, 2022 by Adrian 4 Comments

This past Monday, Mom started her chemo regimen. Here’s how the first few days have gone.

Day 1

I wrote about the experience of getting the chemo here; the rest of the day was fairly uneventful. Mom had to wear a pump thing on a strap over her shoulder; the device would continue to pump chemo into her via her port for the next 2 days. The pump uses gravity, so you had to keep it in a specfic place. It also needed to be kept at room temperature — too cold would speed up the release of the chemo (very bad), and too cold would slow down the release of the chemo (not good).

The strap was terrible; it was just a wide nylon web strap, and it dug into Mom’s neck. Immediate relief was provided by cutting off the toe section of an old sock and sliding the strap through that; a more permanent solution was provided by Amazon.

Fancy strap sleeve; we’re working on the selfie skills.

We were told by so many people at the Center that Mom might have her best days on day 1 and day 2. Aside from some fatigue, and some narcotic-induced haze, it was a good day.

One symptom did appear: the sensitivity to cold. As others were out food shopping for her, Mom started rearranging the freezer items (I KNOW) and was immediately shocked by a burning sensation on her fingertips. This was an expected symptom and indicates a neuropathy condition that will likely compound with each round of chemo. We have some ways to help mitigate it; mom went with putting on some gloves while she continued to play Jenga with the frozen food.

You try telling her not to.

Alia slept over Monday night, just in case, but Mom’s sleep was uneventful.

Day 2

Tuesday was probably mom’s best day this week so far. The IV steroids and other drugs she was given at the hospital were still kicking in, and Mom was up and about gardening and buzzing around the house.

It was Alia’s son’s Ben’s birthday, and we had a bit of a low-key party at the house. Mom was participatory in all events, and actually seemed very much like her self.

Mom was slicing an apple from the refrigerator and immediately felt the burning from the cold; that is something that will likely sneak up on us for a little while.

For those of us on the “care team”, having seen her health decline over the past few months and then bottom out when we rushed her to the hospital a couple weeks ago, the change was breathtaking.

We all knew it was a false mirage, being fed from the lingering IV drugs, but it was restorative.

We got to spend a whole day with Mom just being Mom.

Angella came down for Ben’s party and slept over; she is running point on Mom’s medical care and doing so much research and coordination, we were happy to have her in-house for a couple of days.

During the night, Mom had an episode where her mouth felt like it was burning; thankfully, Angella was there and due to all of her preparations had exactly what Mom needed for relief. After about 15 minutes everything resolved and Mom got some sleep.

Day 3

This day was much better than we anticipated; either because Mom had an extra dose of steroids on Monday when she had the reaction to the chemo at the Center, or because she is tolerating the chemo better than expected, it was a relatively good day.

The home care nurse arrived on time and removed the pump (yay!) and for a while Mom was really feeling well.

Angella’s daughter Kayla came down for most of the day, and Angella and Alia and I strategized on what was working, and what else we needed or could get to keep things running smoothly.

Mom even wanted, and ate part of, an Italian hoagie.

Pop, Mom, and Kayla

As the day turned to evening, we could all tell the IV drugs were finally wearing off, and Mom was feeling worse and worse. Nothing too dramatic, but a definite worsening.

Angella stayed over a second night, and thank goodness she did: deep in the middle of night, Mom started shaking all over. She tried to get up and said she felt “out of body” and disoriented. Angella was able to assist and got her settled and got Mom to take some more food.

The IV steroids from Monday caused Mom’s blood sugar to jump above 340, which we were told not to worry about as that is part of what the steroids do. Well, when the shakes started last night, Mom feared it was her blood sugar and checked it: it was 160. That is still high for her, but an almost 200 point drop in a couple of days felt drastic.

Mom has some light steroids to take at home; those coupled with the food seemed to have settled her down enough to get back to sleep.

Angella got, like, no sleep. This is hard. Seeing your Mom struggle is hard.

Day 4

Mom still had some shakiness this morning, and has been having increased discomfort. Again, nothing too dramatic yet, but tell that to her at your own peril. She feels rather miserable.

We are hoping that the “Day 3 and 4 are the worst days” holds true. We also hope that we are counting the days correctly (Does Monday count as Day 1? Is this only Day 3? Does it matter?)

Angella and Alia and my wife Angie are all helping Mom make her annual Easter (ricotta) pies for over a dozen people. It is a process.

Angella has to return home tonight and be at work tomorrow; Alia is planning to sleep over tonight and I am on deck to sleep over tomorrow.

Family has been in and out, visiting, helping. Cards and packages arrive, flowers are put into vases, comments from texts and social media are shared. All of your efforts to reach out and let Mom know she is not alone are not only being consistently shared with her, but they are making her so happy and moved. So, thank you.

Fingers crossed that by Saturday we are through the woods on this first round and Mom can enjoy a festive Easter with all of us.

Filed Under: Family, Update

  • Page 1
  • Page 2
  • Go to Next Page »

Primary Sidebar

All Posts

From earliest to latest.

My Mom is Very Sick

March 25, 2022

Home, But Different

March 26, 2022

Amazing Grace Indeed

March 27, 2022

Home Office

March 29, 2022

The New Normal

April 6, 2022

Olympic Training

April 7, 2022

Port Replacement Successful

April 8, 2022

Chemo Kick-Off

April 11, 2022

Round One About Done

April 14, 2022

Well, Today Sucked

April 16, 2022

We had a Wonderful Easter

April 18, 2022

Chemo 2: BLOCKED

April 25, 2022

This Is Your Gravy

April 26, 2022

A New Way to Help

April 28, 2022

Chemo 2: Part 2… and Part 3

May 4, 2022

It’s Been A Roller Coaster

May 16, 2022

Round Three Tea

May 19, 2022

Team Purple Firefox Summer T-Shirts Now Available

May 20, 2022

A Few Days to Reflect with Gratitude

May 31, 2022

Round Four Out the Door

June 6, 2022

Faith and Reason

June 12, 2022

CT Scan Results Could be Better, but Could be Worse

June 14, 2022

Life is Full of Gems

June 15, 2022

An ER Vigil in Atlantic City

June 17, 2022

A Day on the Beach

July 22, 2022

Round Two Complete

August 10, 2022

Not Very Good at All

August 24, 2022

Mom is Going on Hospice

September 7, 2022

A Hard Week

September 15, 2022

A Liminal Time

October 15, 2022

Goodbye to the Best of All of Us

October 28, 2022

Memorial Arrangements for Maria Hoppel

October 29, 2022

Words of Rememberance (Eulogy) for Maria Hoppel

November 4, 2022

We Did It.

November 5, 2022

Mom’s Thanksgiving without Mom

November 25, 2022

And So This is Christmas

December 20, 2022




TEAM PURPLE FIREFOX
Copyright © 2025