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An ER Vigil in Atlantic City

June 17, 2022 by Adrian Leave a Comment

After a super fun day shopping in Brigantine, NJ and soaking up some sun on the beach, but felt very ill by late afternoon. She started running a small temperature, which kept climbing.

Mom’s temp spiked this evening to 102 and we took her to hospital in Atlantic City. What follows is a sort of raw account of the night, though it leaves a lot out (like the fight in the hallway outside of our room, the gun shot wound patient who came up and coded, and the absurd nurse we started out with until someone normal came on shift.

###

Alia and I are here with her now as they do a full sepsis workup and get the antibiotics and other IVF up and running.

UPDATE 0019: Mom is doing much better on the IVF and antibiotics. Waiting for results from blood work and figure out next steps. If they want to admit mom we’ll want to transfer back to Penn which I guess is an ambulance ride down the AC Expressway. Or maybe they’ll let us go home.

UPDATE 0058: So far everything is coming back where it was; they don’t know where the fever is from. Mom is neg on COVID and flu and RSV. They want to admit so they are reaching out to transfer team to transfer Mom to Penn.

UPDATE 0145: Moms been accepted for transfer at Penn, but there are no beds available. So she’s in line for a bed there; in the meantime they will admit mom here if they can and wait until Penn calls.

UPDATE 0526: Still in the ER room… all night for Alia and I in wooden chairs. Moms temp was normal a few hours ago. Waiting for a room here where mom can wait for a room at Penn. Her ANC and WBC are too low for discharge and so we are stuck in limbo and nobody has any rooms.

UPDATE 1209: Mom is admitted to the AC hospital, though she is still in the ER hold room. Could be worse; it’s a private room with a private bathroom. The doctors today are amazing, and her nurse is wonderful. We tucked mom in after she ate breakfast and got her morning meds and Alia and I went back to the beach house to clean up, rest a little, and go from here. A lot depends on if a bed becomes available at Penn and they transfer her, or it is possible while Mom is at the AC hospital her cultures come back negative, and her ANC rises enough, and she’ll just be discharged from there and join us back at the beach house for a few more days. It’s all out of our hands for now; I have so much more to say but you’ll have to wait for the update post. I’ve been up for 30 hours straight and most of that spent in a torture chair so I’m going to take a nap. L8er

Filed Under: Uncategorized, Update

Life is Full of Gems

June 15, 2022 by Adrian Leave a Comment

We met with Dr. O’Dwyer today to review Mom’s CT scan; he’s changing everything. We retreated to the beach to bask in the sun and salt air, and the generosity of a friend.

Early this morning my sisters and I took Mom down to the Abramson Cancer Center to meet with Dr. O’Dwyer and review Mom’s recent CT scan. We recovered from our initial scanxiety shock and went with open minds and open hearts to hear his expert opinion.

Still, we were nervous.

We need to get matching masks. Come on.

Dr. O’Dwyer is confident and assured and he really had nothing but good things to say. He spent a lot of time talking to Mom directly about her symptoms, and what she is doing about them. He was very adamant that Mom needs to get more protein into her diet and eat more, and is a little concerned about Mom’s weight loss. My sisters and I (and my of our regular visitors) have been beating this drum since March, but, you know, maybe hearing it from *one* more person will get those protein smoothies going again.

After examining Mom, Dr. O’Dwyer turned to the main event: reviewing the scan. To paraphrase, he said:

“It looks like maybe the tumor grew a little bit. Not much, in fact, it is very close to the same size. But we are not doing all of this just for no growth. We want shrinkage. We want to shrink the tumor and get you to a place where we can meet with a surgeon. That was goal in the beginning, and that remains our goal. Right now, we need to re-evaluate, and to re-evaluate, we need to make some changes. So we are going to change from Folfirinox to the other regime we discussed in the beginning: Gemcitabine/Abraxane.”

This regimen has shown a lot of success, especially when used after a patient uses Folfirinox. The Folfirinox is the first choice, but if it is not producing the best results, the standard practice is to shift to Gemcitabine.

This is a totally different regime.

With Folfirinox, we went down to Penn every 2-3 weeks for a 5-hour session, followed by 46-hours of at-home chemo delivered via a pump Mom had to wear with a should strap.

With Gemcitabine, we will go down to Penn every week for a 3-hour session, 3 weeks in a row and then 1 week off. No at-home chemo.

The symptoms we should expect with Gemcitabine are the same Mom experienced with Folfirinox, but perhaps less extreme.

Dr. O’Dwyer wants Mom to do three weeks in a row, take a week off, then three weeks in a row again, and then they will see how the numbers look.

Gemcitabine has to be on a stricter schedule, ideally the same day each week, and no skipping weeks.

So, much of our planning for the next few months just went out the window. OK, we always knew something like this could happen.

Dr. O’Dwyer wanted to start TODAY, while we were there. We had plans to take Mom down to the beach for a few days, and we thought today’s meeting would be about 30-minutes and then we were going to head for the coast.

None of THAT was going to happen like that.

We immediately started scrambling, me hovering over the checkout desk with the scheduler trying to get all of the dates lined up, my sisters feeding me their schedules so I could get the best dates.

It turned out that there was just no room for infusion today, but we could get a chair tomorrow.

So… we packed up and headed for the beach, and we plan to drive Mom back tomorrow for her first chemo on the new regime.

I didn’t get a picture of the inside of the minivan on the ride down, but I was one of seven, including my Mom and Dad, and floor-to-ceiling bags and food and drinks. The Sienna felt heavier than when we go on our cross-country road trips!

We made it.

A good friend is letting us stay at their home in Brigantine, NJ, and it is heaven. Beach-front. Stunning views. Tons of bedrooms. We set Mom and Dad up in the primary bedroom, and we are all jealous.

If you must recuperate from chemo, this is a pretty great bedroom to have.

My wife and three of my kids are here. My younger sister Alia is here with most of her family, and my Dad’s sister Janine and her daughter Molly are down tonight. My older sister, I hope, might swing down for a day or so. Some other people might pop in. It was a last-minute opportunity, so whoever can make it, can make it.

Mom is already on the beach.

The generosity of our friend to offer us their beach home is incredible. It was so very much just what we all needed. Mom’s diagnosis was in March when it was still cold and rainy and dark.

It has been a long spring!

And even though Dr. O’Dwyer insists we see the gem in the rough, and even though our spirits are high for the new regime, we are all exhausted, and we could have used some miraculous news.

Who knows — there are many cases of people who had little to no impact from the Folfirinox and then had incredible, tremendous results from the Gemcitabine.

Why not Mom?

This is a good moment. We are grateful.

There are little gems everywhere. There are my Aunts who have been showing up and sitting with Mom for hours and hours. There are friends who surprise us with their generosity. There are stories that inspire and fill us with hope. My Godmother, my Mom’s best friend, seems to know just when to deliver the thing — a well-written text, some amazing snacks, a hug and a long visit, a random Amazon delivery — that we need. There is a full moon and clear night. There is the sea, and the sun, and a beautiful day in a beautiful space.

Tomorrow (Thursday) Alia and I will drive Mom back to Philly for a few hours to begin her new chemo regime.

Tonight, we will watch the moon rise over the ocean and we’ll toast to our good fortune and our good friends and our good family.

Tomorrow is a new day.

New and Improved! Now with Gems!

Filed Under: Abramson Cancer Center, Beach, Update

CT Scan Results Could be Better, but Could be Worse

June 14, 2022 by Adrian 4 Comments

The raw results from Mom’s CT scan yesterday are posted, and we have a lot of opinions. Tomorrow, we meet with Dr. O’Dwyer to get his expert opinion.

When the results came in overnight, Alia got them immediately; she read that the tumor now “measures 3.2 x 3.8 cm, previously 2.7 x 3.6 cm on 3/24/2022.” So, all of our initial response was based on the understanding that the tumor was growing, and you’d have to conclude that the chemo is not working. We were all understandably upset, even though we had discussed and thought ourselves prepared for this outcome.

However, there are a couple of variables to consider.

First, the original scan on 3/24/2022 had the tumor size at 3.3 x 3.6, not 2.7 x 3.6. If you go by the original numbers, then Mom’s tumor is basically the same size as it was in March. which is a lot better than “growing”. So which numbers are correct? There was some discrepancy at the time between the initial CT scan and what the surgeon observed during the ERCP procedure, but if the numbers are actually about the same, then you have to conclude that the chemo is working, at least a little.

Second, when Mom went to the ER on 4/16/2022, they did a CT scan and measured the tumor at 4.2 x 4.0, which is larger than the initial scan and larger than the latest scan. Mom had only had one session of chemo at this point. If you include these numbers, then Mom’s tumor was growing between 3/24 and 4/16, but then has been shrinking, and you might infer the chemo is starting to work a lot.

3/24 CT Scan

3.3 x 3.6 or 2.7 x 3.6

4/16 CT Scan

4.2 x 4.0

6/13 CT Scan

3.2 x 3.8

However, the hospital that did this CT scan had some typos, or some mistakes, in resulting their scan, so some of us dismiss these numbers completely.

I part I feel like we know for sure was summarized in this text on this part of the report:

Pre-existing lesions: Slight increase in size of select tumor(s). No evidence of substantial tumor enlargement.

Even that, though, seems to contradict. There *is* a slight increase… but no evidence of substantial tumor enlargement.

OK, so, what does it all mean?

I don’t know! It is not the miracle we irresponsibly hoped for, but it is not crushing news either.

Either way, we should get more clarity tomorrow when we meet with Dr. O’Dwyer. We are very anxious to hear his thoughts, how he’d weigh these variables, and what changes, if any, he recommends making moving forward.

So, we have information, but we don’t have answers. We have an appointment for tomorrow morning with a world-renowned expert who will help us to make sense of it all.

I hope.

Filed Under: Update

June 14, 2022: A Good Day

June 14, 2022 by Adrian Leave a Comment

The last 24 hours were great for Mom; a very active day. We went down to Penn for the CT scan, and then Mom went out shopping with Alia. Mom was in very high spirits all day, with little to no symptoms at all.

Filed Under: Chemo 4, Daily Status

June 13, 2022: A Good Day

June 13, 2022 by Adrian Leave a Comment

The last 24 hours were really great for Mom; we had a wonderful morning where we hit the early Mass at St. John’s, then Marchiano’s Bakery, and then T&F Market. Mom felt great the whole time and even cooked Sunday dinner for the fam. Today is Mom’s first scan since chemo started; glad to be heading into this on a good wind with a lot of green days stacked behind us. You can read more about “scanxiety” and how we’ve been leaning on faith when reason fails here.

Filed Under: Chemo 4, Daily Status

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

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My Mom is Very Sick

March 25, 2022

Home, But Different

March 26, 2022

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March 29, 2022

The New Normal

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Olympic Training

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Port Replacement Successful

April 8, 2022

Chemo Kick-Off

April 11, 2022

Round One About Done

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Well, Today Sucked

April 16, 2022

We had a Wonderful Easter

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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




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