Abramson Cancer Center

On Friday, June 3, Mom got her fourth round of chemo. The infusion went well, the weekend was a little rough, but we are pushing forward.

Labs

Mom got labs done at Labcorps again last week, two days before infusion. The results were…OK. We felt like Mom was not going into this round with the same energy as the last round, and the results supported that.

Mom’s White Blood Cells (WBC) were down to 4.4, and they were 5.1 the last round. That was not as concerning as her neurophils, which were down to 1.2. The time we were sent home, they were .8, and our provider told us that Penn requires them to be 1.0. We read that many places require them to be 1.5, so we were unsure what to expect.

It is just one more thing to stress and worry about: somehow, no matter how reasonable you try to be, waiting for the labs feels like waiting for a report card, and being sent home without infusion feels like a failure. Obviously, this is not the case, and it would be terrible to let Mom believe it was her fault, that it was something she did not do well enough to get her numbers right before chemo. We all know that, and no one really believes that. But, honestly, it *feels* stressful, and, what can you say?

Feelings are their own kind of real, and they have their own kind of impact, and the stress and anxiety surrounding lab results can be oppressive.

We never got any confirmation if the numbers were really OK or not, so we prepared to go and hope for the best.

Infusion

Mom, Alia, and I got down Penn early and they had never received Mom’s labs. I had a PDF of the results and had already uploaded them to Mom’s portal; but now while we sat and waited for them to sort it all out, it just add to the anxiety. I can’t really understand why we get so attached to this part, but we do, and the tension was high. It was only a few minutes and then we were directed to our room.

By this 4th round of infusion, we have a decent little routine: Mom does not sleep much the night before because she has chemo stress, and then sleeps much of the time in the chair; we put HGTV on and make fun of all the projects and the wastefulness of people; Alia and I comment on the quality of snacks we’ve brought; I wander off for coffee about halfway through and wonder if I should have asked the nurses if they wanted any; while roaming for coffee I try to find an even more efficient way through the building than before; we eat lunch together; and eventually we get a little silly.

This time, I commented in passing that I think I left my new Nalgene water bottle here during Round One. Mom said the nurses probably had it someplace safe and I should ask. I said, no way, because that was in April, and keeping someone’s water bottle is gross, and I hope if I did leave it here that they threw it out. Mom told me to go check, and I refused. I wasn’t even sure if I had left there, but even if I had, I could *never* go ask something like that.

When Mom got up to use the bathroom, she asked Alia to walk her around a bit so she could stretch, and Alia happily complied. Well, it was all a lie: Mom went right to the nurses station and asked them to please all go look for a blue Nalgene water bottle. She told Alia, “Adrian will probably be mad I am doing this, but they don’t mind.”

Narrator’s Voice: It turns out, they did, in fact, mind.

Alia was sure they were giving us dirty looks the rest of the day.

Great. And here I was sipping a latte and I never even asked them if they wanted any coffee.

When we got home and I told this story to my wife, she reached up on top of the fridge and said, “You mean this water bottle? It’s been here since April.”

Now I can never bring that water bottle with me again.

Toward the end of the infusion session, a man came in and offered reiki therapy. Mom, who was asleep when he came in, at first that that the man’s name was Reiki Volunteer because of his name tag.

Honestly, if I ever get around to writing a book, this will be a character’s name.

Once the infusions were finished, I led us on the new and improved, more efficient way out I had discovered earlier, and we got home mid afternoon.

Mom still had 46 hours of chemo to go, administered via pump to her chest port, which would come out around noon on Sunday.

Of course, now I need to go buy a new water bottle before we go for Chemo 5 in a couple of weeks.

Weekend Warrior

We could tell Mom was not her most energetic leading into this round of chemo, and this past weekend was a little rough. As soon as the at home chemo ended and the pump was removed on Sunday, Mom crashed. Exhaustion, pain, nausea… all the symptoms, almost like clockwork. There is always some frustration with these crashes: Mom has done so much already, and there is still so much to go, and it feels like maybe it would be nice if she didn’t have to struggle so much at times. It is very deflating for her.

For all of us, in one way or another, we are starting to feel the grind of it all. Four rounds over the last two months. We’ve been down to Penn 8 times now. The “newness” of it all has worn off, and it is all starting to feel a little routine, and having your Mom go through chemo as something “routine” is kind of terrible. It feels like there will be no end to this, and Mom is tired of it, and we all feel a little worn out by it.

Mom fights through, though; she wears this medallion that her best friend bought for her and it has this quote on it: “Fate whispers to the warrior, ‘You cannot withstand the storm.’. The warrior whispers back, ‘I am the storm.“

Mom repeats that like a mantra: I am the storm.

Mom is tough. She fights. She persists. She inspires. We stand with her, and will walk this path with her the whole long way.

Fortunately, we have some exciting events coming up…

Events on the Horizon

It has been a long and emotional spring, but summer is here and we are locked in and ready to have some fun, too.

We rearranged Mom’s chemo schedule to fit in some events she is excited about.

First, Mom has a CT scan scheduled for 6/13; this will be the first look to see if the first four rounds of chemo have had any effect on the tumor. A couple of days after that, we will meet with Dr. O’Dwyer to review the results and adjust the regimen as needed.

This scan has been on our minds since the initial diagnosis. It will either bring us good news (yay! the tumor is shrinking!) or just, well, news (the tumor is the same or larger, so we need to adjust the chemo).

Either way, it is a milestone.

After meeting with Dr. O’Dwyer, we are heading down the shore; not our regular family vacation, but an “extra” vacation for a few days in a big house on the beach. All my siblings and their kids will be down and some point, and we are all looking forward to a bright change of scenery.

They say the cure for anything is salt water: tears, sweat, or the sea. We are a family that has always spent parts of the summer at the beach, so these days are meaningful to us, and the sea air has always been welcomed.

While we are down there, Mom’s sister will be flying in from AZ and driving down to take mom to the big annual Kenny Chesney concert in Philly. Most of her sisters and nieces and nephews will be going, and they have a big tailgate party and lots of fun energy.

Chemo 5 will come shortly after that, and then we will all gather for our annual week-long family vacation in OCNJ. We’ve been renting the same house for 18 years now, so it is a Rite of Summer that we all look forward to.

There is much more to look forward to as well. There are many hurdles and obstacles ahead, many bad days that will spring up out of no where, and the malaise that comes with such a long campaign, but there is much to look forward to.

Right now, the sun is high, the air is hot, the water is warm. We’ve come a long way with a long way to go, but we’re going to take a few days to sit in the sand and listen to good music and eat good food and just celebrate being together.

Until next time…

There Are 3 Ways You Can Help

Mom’s third round of chemotherapy comes to an end today. Here are some thoughts about the experience, with one eye looking at how things compared to rounds one and two and one eye looking at what’s next.

Chemo Day

On Tuesday, May 17th, Mom, Alia, and I set out for Penn’s Abramson Cancer Center to meet with Mom’s provider and settle in for 5-hours of infusion (chemo).

To avoid being sent home with low white blood cells (WBC) again, Mom had bloodwork done at a local Labcorp the day before. While it took over a day to get the results, we did get them before we left, so we knew the WBC would not be an issue this time. For those of you keeping score at home, Mom’s WBC was 5.1, and her ANC was 2.3. The numbers were lower, but they were well within range.

The first part of the day involves meeting with Mom’s provider, Abigail Smith, CRNP, MSN. Abby works for Mom’s primary oncologist, Peter J. O’Dwyer, MD. We generally meet with Dr. O’Dwyer every four infusions and meet with Abby during the other infusions.

Abby told Mom repeatedly that Mom was doing amazing. She said Mom’s numbers were fantastic and that the dosage adjustments made after round one seemed to be working great. Mom’s vitals (blood pressure, weight, etc.) were excellent. Abby ordered a CT scan after round four in a few weeks and ordered an appointment with Dr. O’Dwyer to review it; she also suggested we schedule Mom’s rounds five and six for after that.

We’ve developed a pretty good routine for these chemo visits; Alia and I and Mom make a nice team.

Around noon we were assigned a room for infusion; the nursing staff in the infusion wing were incredible (as always). The hours passed without incident, and much criticism of whatever was on HGTV. The “coastal look” is cool and everything if you are, you know, on, or at least near, a coast; it is silly when you are a few hundred miles inland from any saltwater. Anyway.

Mom’s chemo is called FOLFIRINOX, and it is actually three different kinds of chemo; they administer two while at Penn and hook up the third to a small pump that Mom has to wear at home for 48 hours, which is fun for Mom.

When the first two parts finished, we packed up and headed for home. The prescription I should have ordered days ago was finally ready, so we picked that up and were settled in for a late dinner.

Two of Mom’s granddaughters slept over that first night, and we have family scheduled for sleepovers for the rest of the week.

Later this afternoon, the at-home nurse should arrive to deaccess the chemo from Mom’s chest port and hook up some IV fluids, a wrap on round three.

The Past

We don’t want to get too hung up on looking for repeatable patterns. However, I can’t help it. I color-coded each day as Good, Medium, or Bad for Mom since she got the diagnosis. I also colored the chemo days. I set up a page on this website to display them all.

I hope that, perhaps, some pattern might emerge. I know we have to take each day one at a time, but I also believe you can manage anxiety and stress if you can create a framework of expectations. I think sometimes fear is a pain amplifier.

Here is what the grid looks like now:

The sample size is too small, but still, it appears Mom has maybe four good days after chemo followed by a bad day, followed by a string of good days. 

We’ll see if this pattern holds at all.

The Future

We scheduled Chemo 4 for a few weeks from now; we’ll continue to get the bloodwork done a day or so before at Labcorp. 

Then, in June, Mom will have a CT scan done to see what impact the chemo has had on her tumor. It is possible that the tumor may have shrunk, is the same size, or continued to grow. Some of those options are better than others. We will meet with Dr. O’Dwyer to review and determine if we make any changes to the chemo cocktail Mom is currently on.

So, we’ve marked up the appointment calendar through July, with some significant events in the next few weeks.

Your continued prayers, wishes, and support are welcome and needed; this is a marathon, not a sprint.

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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 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.

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.

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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.

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.

Mom started chemo today. Up until now, the cancer has been on the attack. Today, Mom goes on offense and takes the fight to the cancer.

We, Alia (sister ) and Mom and I, arrived at the Abramson Cancer Center early for an 8:45 a.m. appointment — extra early, as I never know what I-76 is going to be like during rush hour.

Despite our enthusiasm to be here on-time or better, we ended up sitting and waiting for about an hour.

There are so many people here, apparently it is too easy to get overlooked. Despite the fact that we checked in early, apparently they forgot to ”assign a room” to Mom to meet with her provider, and it was not until we went back to the desk to check that we got things moving.

This is the second time something like this happened here, and we should have been more aggressive today with making sure Mom was being seen within 15 minutes. Next time we will be on top of that.

However, like the last time, once things got moving, they got MOVING. In minutes we were being seen by our provider who reviewed everything and answered questions and spent so much time with us.

From there, we scheduled Mom’s next 3 appointments and checked in for infusion. I think ”infusion” means chemo. Or close enough. Infusion is where you go to get chemo so we will go with that.

We got a big private room with a nice view and plenty of natural light.

The nurses handling all the work are tremendous — efficient and cheery and confident.

While we were waiting for pharmacy to mix the chemo — they don’t do that until the last minute, and every chemo dose is custom made for each patient — we were visited by a pharmacist who went over Mom’s entire list of medicines and supplements. He talked about how each worked with each other, what the side effects could be, and what we could do to counter the side effects, and so on. He gave us a folder full of info and his card with his cell phone that he said we could use anytime if we had any questions.

While the pharmacist was meeting with us, Mom’s chemo arrived and the nurse hooked it up and got things flowing.

After a few minutes, Mom had a reaction to the chemo; she lost feeling in her throat and had trouble swallowing. I was out getting coffee, but Alia was here and witnessed the rapid response team arrive in about a second. They paused the chemo and gave mom some steroids and got things settled down, and eventually re-started the chemo, but at a slower rate.

This being the first time, we were prepared for anything. We were told many times how each patient reacts differently, and there would be some trial and error.

Still, it was quite scary for Alia and I am sorry I wasn’t here.

But mom is fine, and that La Colombe coffee is the best on the planet.

Once the chemo was flowing again, we were visited by a nutritionist. We’ve been working so hard the past few weeks to stock my Mom’s house with the best possible foods, and it was wonderful to hear the nutritionist state that we were on target. She had some great explanations for some things, and some great tips, and also left a folder full of recipes and information, and her cell phone number if we should have any questions.

This place does love their folders. Each one is custom designed. Some graphic designer landed this gig and is probably funding his whole operation with this work. Custom folders for every team. Good for them. I am not jealous. It’s fine. Everything is fine.

So, with the delayed start and with the slowed-down chemo, we are here for a few more hours than we anticipated… but what we anticipated was potentially being here all day, so, no worries.

Mom is comfortable — napping, watching TV, playing crosswords.

We talked about what games to bring for next time, what foods to bring for next time, and who might come next time.

We are focused on next times, on all the next times.

We have faith this will work, and we will have many years of planning ”next times” with Mom that have nothing to do with hospitals and pharmacists and nutritionists.

As for today: that should be about it for today; hopefully we will be on our way home shortly.

Until next time…