Round One About Done

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.

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.

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.