Adrian

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…

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