Update

Chemo 2: Part 2… and Part 3

May 4, 2022 by Adrian 5 Comments

After we were sent home without chemo last week because Mom’s white blood cells (WBC) were too low, we were energized to return yesterday for infusion. However, after having labs done, we found ourselves being sent home once again. Today, though, Mom is back in that chair.

During Mom’s first infusion, she had a reaction to one of the chemo medicines. The team decided to make some modifications to the regimen, including slowing the rate of infusion for one of the meds — which meant each future session would take longer.

When Mom was sent home last week because the WBC were low, and come back this week, it knocked all of the future appointments out of whack. They all needed to be rescheduled.

When the appointments were rescheduled, they were scheduled according to Mom’s original regimen, instead of the revised (slower) one.

So, when we arrived yesterday for infusion, they realized that Mom was only scheduled for a 3-hour appointment, and she needed a 5-hour appointment. The problem was that there was no longer enough time in the day (before the emergency response team left for the day) to fit in 5-hour appointment.

With heavy hearts we had to pack up and return home, with a fresh appointment for first thing this morning.

There are a lot of nice, and correct, things to say about how this was for the best. It was for the best. But the frustration was palpable. Mom, normally very easy going, was really very upset. It takes a lot of emotional resources to get yourself in the right space to go in for chemo, and now it was twice in a row that it felt like it was all for nothing. Sure, labs were completed and consultations were held with our provider, but, still… the frustration was real and a little overwhelming.

Mom’s sister, my Aunt Diann, had flown out a few days ago from Arizona, and thank God for that, because we were all spent. As hard as it was for Mom to start and stop like this, for Alia and I, it was also exhausting. So many arrangements with regard to child care and work were made and spent and they would all need to be made again, on the fly, to return the next day.

Aunt Diann, Pop, and Mom, ready to go yesterday.

Aunt Diann took over and sent us home for the night while she slept over with Mom and helped get her out of a funk and motivated again. By the time we arrived at O-dark-thirty today to pick up Mom she was back in high spirits.

And so, on the highway before 7am, we found ourselves back at Abramson Cancer Center, (finally) getting Chemo #2. Mom’s numbers were fantastic yesterday (WBC went from 3.1 to 8.8; ANC went from 0.80 to 5.40), and we have all the future appointments rescheduled to accommodate the 5-hour chair.

Today, the modified regimen went off without any issue.

It was a longer day, but smooth and easy. Mom slept most of the time, and when Alia and I were not dozing off, wishing we had a big reclining chair like Mom’s to sit in, we chatted and goofed off.

Me across the bridge and out in the atrium looking back at Alia in the room with Mom. Intellectuals.

We are hoping these IV drugs keep up up and about for the next couple of days while she continues her at-home chemo infusion. We have people scheduled to sleep over each night and people scheduled to bring over dinners.

Mom’s hairdresser just arrived for a home visit (thanks Aunt Judy for making that happen!) to “do something” with the hair that is starting to fall out in greater quantities. Mom says she would rather be bald tand wear a head scarf than have to pick up one single strand of fallen hair.

Aunt Diann is busy making a lasagna and meatballs. Spirits are high.

After a few setback, I have to say, today was a pretty, pretty, pretty good day.

Are you interested in helping by bringing over dinner one night?

Click Here and pick a day!

A New Way to Help

April 28, 2022 by Adrian 2 Comments

Are you looking for a way to help, and are inclined to cook? All aboard! Angie Rae organized a Meal Train where you can sign up for a day to bring over some of your good food.

We know we have a big family here in Philadelphia, and a lot of close friends and neighbors and former co-workers that want to support Mom.

Providing meals is a wonderful way to shoulder some of the burden we are currently experiencing.

So many of our friends and family have been bringing food every week, and our hope is that this calendar will help everyone to see which days food has already been provided.

She has no dietary restrictions and her taste preferences have been changing as she receives treatment.

Anything you are inspired to make will be appreciated and enjoyed by her and/or those who are with her.

All you have to do is click here and volunteer for one of the available days.

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.

Chemo 2: BLOCKED

April 25, 2022 by Adrian 7 Comments

Mom was supposed to get her second round of chemo today, but it was not meant to be. We could have known; all the signs were there.

It was not the construction right outside Mom’s door that prevented chemo today, but it didn’t help, and perhaps it was an omen.

After last Saturday’s ER trip, Mom had a really great week. Easter was fantastic, and then all week long Mom seemed to get stronger and better.

Visitors came and were shocked at how much better Mom looked.

By Wednesday, Mom was all about ”Bring it on.”

By Friday, Mom and Angella and Alia and Stella (granddaughter) were out shopping and getting a little retail therapy in; the weather was warm and sunny, and spirits were high.

Everything seemed in place to go into Chemo 2 with high energy and motivation.

However, by Sunday evening Mom started feeling worse and worse; when I arrived around 630 p.m. I thought Mom was on heavy sedation, when in fact she had had several days with reduced pain meds and had been feeling great.

By 7 p.m., Mom needed to go lie down, and she was was out cold. We took her temp, and it was 99.4, and immediately we were concerned.

Everyone has been drilling us that if Mom’s fever gets to 100.4, we need to go to the ER immediately. Any ER, closest possible, and as quickly as possible.

So, we were worried. Mom’s temp went up to 99.7 by 10 p.m., and I decided to sleep over and Alia came back and called the overnight on-call doctor.

We had a call back within minutes — and having a doctor call you back at 11:15 p.m. on a Sunday night is both wonderful and sobering, because it is another realization that this is not a ”normal” medical situation. What Mom is going through is extraordinary. It is happening everyday to thousands and thousands of people, but it is something that happens in a space far outside the regular.

The doctor told us that we knew Mom best and, if we wanted to bring her to an ER, to do so, but if we wanted to let her sleep and check her temp again in a little bit, they would support that as well.

We opted for the latter, and by midnight Mom’s temp was down to 99. I stayed awake on the couch for a few hours, watching old episodes of The Sopranos, and around 2:30 a.m. Mom’s temp was still 99, so I decided to get some sleep myself.

After all, in the morning we were off for another long day at Penn’s Abramson Cancer Center. We knew this sort of thing was to be expected, but still, it catches you off-guard in a way, especially after such a ”normal” week. I think we all, unconsciously, or maybe even consciously, just want this not to be happening, and it is easy to convince yourself of that alternate reality if you are not careful. And who wants to be careful about that? It is much better to just sit and chat and eat with Mom and put all of this out of the forefront of your mind.

And then, without fail, reality will remind you what is what.

When I woke up and started getting ready, I noticed that the long-delayed and oft-delayed re-paving project on the street outside of Mom’s was finally looking to be finished… and I could tell it was going to overlap with when we needed to leave. You can check my Facebook if you want to read my rants about this Streets Dept. mess that has haunted us for like 4 weeks now. But this is not the space for that.

I kept looking at the Roller, parked right in front of Mom’s car, blocking the street and blocking our driveway, and wondering ”It is going to block us? Are we going to be blocked? Will I have to go out and tell them that my Mom needs chemo, and will they move everything out of the way? What if they can’t, and we miss our appointment? Will they reschedule?”

Fair questions, and ominous.

Because we would be blocked — not be the construction projects (which I evaded by moving all of the cones, driving on the sidewalk, making a u-turn in a neighbor’s driveway, and driving the wrong way on a one-way street for blocks and blocks) but my Mom’s White Blood Cells.

Surely, those of you who have been through this cancer/chemo dance were not surprised by the WBC issue. I understand it to be common. Our provider was adamant that Mom’s numbers were fine, that this was normal, and they just wanted to reschedule so she could have some time to get stronger. She repeated that Mom is starting out with the most aggressive chemo plan possible, and delaying and reducing dosage is normal, expected, and part of the plan.

So, we are wrapping up our day early. Mom is getting some IV fluids right now, and we have rescheduled the next three appointments. Mom can still have visitors, as her WBC are not at a dangerous level yet but they are still way too low and too low for chemo, so we might have some increased precautions when stopping by the house.

Mom, rocking out on her Air Pods and getting those IV fluids while we are here.

Either way, in a little under an hour we will head back home, hopefully onto a freshly paved street.

And we’ll try again next week.

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.

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!

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!

Well, Today Sucked

April 16, 2022 by Adrian 6 Comments

We had to take Mom to the ER today with extreme abdominal pain. It was a long night, a very dramatic morning, and a long day.

I slept over last night to help Mom with whatever she needed; things started off OK, but steadily declined throughout the night.

Mom had increased abdominal pain, and intensified reactions and symptoms to the chemo. I slept on the couch and tried my best to keep her comfortable; I feel like the third-stringer, not nearly as skilled as either of my sisters, both nurses, but I did my best.

By morning, I was texting them both as the situation worsened. At 8am, I gave mom her next round of meds, but, by 9am, it was clear we needed to take some more drastic action.

Mom felt strongly that ”something is wrong” and when I asked if she wanted to go to the ER, she said ”Maybe”, which is a lot for her. So I threw some pants on over my pajama shorts and with Dad’s help we got her into the car.

I jumped in the driver seat and told Dad I would text him. I was definitely hyper-focused on getting Mom to the ER as quickly and safely as possible, and before I knew it, I was pulling away, having left my Dad standing in the street.

Such a great son, I know.

Mom was in a lot of pain the ride over, and we pulled into the ER lot and I walked her into the check-in. I looked down and saw she already had her driver’s license, her insurance card, and her vaccination card out an in her hand. There are rules, there are protocols, and mom likes to follow them. No matter what.

Soon she was checked in and a wonderful triage nurse who remembered Mom from when she worked at the hospital helped get us settled into a room.

My older sister Angella sent me a list of meds and other notes that she knew the staff would need, and I was so grateful for that; even though the triage nurse felt that I must be ”in the business” because of how I was explaining things, I really barely can keep up with what is going on.

Little things like that, like having that list ready and knowing to send it to me, make such a difference.

Masks are annoying, but really next level annoying when you haven’t brushed your teeth.

It was at this time I took a breath, and texted fam that I had a phone about to die, no charger, had not eaten in about 18 hours, had not slept more than 2 hours, had no coffee yet, had not even brushed my hair or my teeth… but Mom was starting to calm down.

IV drugs are great. Soon Mom was sleeping, and calming. I think she got more sleep there than she’s had for the last few days.

My older sister Angella raced down from her home and picked up my Dad on the way in; it takes a village, right?

Angella spent the rest of the afternoon with Mom; I went home and got cleaned up and some food and some coffee and tried to pick up the house.

Usually this day is a big Easter Egg Dyeing party at Mom’s house; the younger kids were still looking forward to that so we go something going for them while we waiting for Mom to be released.

Angella sent this update:

Today was hopefully the last of the bad days this cycle of chemo. Mom was rushed to emergency with severe abdominal pain. Repeat ct scan showed good blood flow and no further occlusions. Ivf and a few doses of morphine has helped but her mouth is so sore, hot and cold are intolerable, and non stop abdominal pain (always there). Narcotics help but knock her out. We are hoping to find a balance soon for her. Keep her in your prayers

Mom is home.

Angella, Mom, and Ben (Grandson) home and getting some Easter baking on.

Today was a bad day… and it came sooner than we thought. I was unprepared to be doing an emergency room run, and while we did get Mom there, I won’t say it was my best work.

It was the first really bad day. I know it won’t be the last one, I just didn’t know it would be today. This is not the kind of thing you really want to ”be better” at, but better at it I will be.

Mom is feeling a little unenthusiastic about this whole thing, which I know is also normal, but still, it’s Mom.

Still hoping for some better days to start coming our way tomorrow.