The current pattern
Yesterday evening Kevin, my brother-in-law and soul-brother, checked in with me. With everything going on we kept it to a text-based conversation. He asked a simple question of how was today? I was going to write something simple, to say that it went well and I had to catch myself as I realized our normal here just is not normal. Generally, it was a good day, we are carrying on with the plan. Generally, it was a lower stress day. Below I refine and expand on my original text to give you a glimpse at how our days are:
The day started early, or perhaps there was not night. Given the amount of fluids being pumped into Sam we were up every 1.5 - 2 hours. So we start the day sleep deprived.
Every hour something was going on with Sam’s medications and or tube feed. This included numerous chemo drug deliveries.
Several blood and fluid tests – checking chemistries and how those may impact the delivery of chemo.
The IV team was in to change one of his dressings – the one on the PICC on his arm which he received last week. FYI Sam is down to two sets of blood connections. The PICC on his arm, which is not centrally located, and the Hickman which is being used to deliver the chemo.
Sam is on a tube feed. He is still eating regularly, but with all the potential impacts from chemo the desire is to supplement his nutrition, and give him every chance to regain or retain weight.
Dr. Peggy W. came by for her usual check-in, clarified a few of our questions, but no concerns – all is going as planned
The nurses were training on a new protocol for hooking up the IV system. … they are moving to a quick connect/release system.
During much of the above Sam and I watched a movie, obviously with a good number of pauses – I think the 2-hour movie took closer to five.
I got out — took a nap and had a shower over at the Ronald McD House. When I got back Sam and Tina were also able to nap – so helpful is restoring our short nights.
We have a small fridge in the room, and with recent meals it was a left-over night. On the food front, we are very pleased that we have not struggled to keep Tina in food despite all her food sensitivities.
Victories and concerns
Thankful for visits with friends and family
Thankful that Tina has had good food.
Concern for the current round of treatment. We are expecting side effects. To date, we have not seen very little. A little soreness in the mouth but this has been very manageable.
Concern for potential longer lasting and high impact side effects. These can include damage to bodily organ or secondary cancers.
Ultimately, we are concerned that the treatment is effective and that the cancer is removed entirely from Sam’s body.