Satomi slept soundly and didn’t awake until I poked her at 8:30am. I really enjoyed sleeping the extra hour. She was able to swallow her morning pills and didn’t complain when her other medications were administered. She refused to eat but she did drink a good amount of water. A friend from her cancer support group arrived to sit with Satomi this morning. Satomi awoke to exchange a happy greeting and a few sentences but slept soundly until 1:00pm. No aches and pains, no discomfort, no seizures but also no interaction-Just sleep.
We had some other visitors this afternoon. We hadn’t seen these friends in some time so Satomi was very motivated to stay awake. She was alert and smiled and interacting with them for an hour. I was so happy that she had the strenth to spend some quality time with them. After that hour, her energy quickly ran out. She became very fatigued and her headaches returned. I’m sure it was the excitement of the visit that kept her going for so long. She was down for the afternoon. This evening was mostly uneventful with the random head, arm, and back ache but involved a lot of sleep.
Today was better than expected.
Besides her pain patches, she received a bit less than her regular Oxy and Ativan dose last night. It’s a touch more than the evening before but less than that which sedated her. My goal was to have her awake and alert in the morning.
She awoke at 7:00am and seemed moderately lucid. She had a small but complete breakfast. So far it was a good day.
After breakfast, the headaches returned. I treated them with cold towels but after nearly 30-minutes with back, neck, and head pain, I opted for a small dose of Oxy and Ativan. There were hours until the first visitors arrived at 11:30pm so the impact of such a small dose should be minimal.
I was wrong. These medications were enough to knock her out for the majority of the day. She had five visitors today but had no more than 20-minutes of conscious time amongst all of them.
She ate again at dinner time. I had to transfer her from bed to her wheelchair so I could tidy her beddings-It was a mess and completely nonfunctional.
As she returned to bed after eating, the movement triggered a serious seizure. It was easily five-minutes long. After regaining consciousness, her right neck muscle would not come out of spasm. The Hospice RN On-Call agreed that I should treat the issue as a muscle pain and forgo pain-killers for as long as possible. I iced and massaged her neck as we waited for the spasm to stop.
It took a bit of work and her bedtime medication, but now she’s sleeping peacefully.
She has four more visitors tomorrow so we’ll see how well she does then.
Last night before Satomi’s bedtime medication, she rested in bed. I took advantage of this time to organize a few things. I was scouring our records to compile all of our important papers-passports, licenses, insurance, birth certificates, etc.
In one of the boxes I found copies of our early Xmas newsletters just after we got married and before Kandice and Jillian were born. I was very moved as I read them-Optimism and excitement for our future together, a jovial tone.
As I dug deeper, I found this picture and I couldn’t keep my composure.
Since starting this journey all those years ago I’ve learned not to reminisce much. I never look at old photos. It’s my Kryponite. No one wants to see what happens when I’m exposed to it-All of my fluid drains from my body through my face and I lose rational thought.
I thought for a moment and decided against my better judgement. I cleaned up my drippy face and woke Satomi. It took her a minute to focus and realize what she looked at. I could tell she recognized the picture after the look in her eye changed.
I joked about the 4″ heels that she wore that day and the nasty green funk that was floating in the water behind us. You can see it if you look closely.
It was a happy memory and made Satomi smile.
This morning I transferred Satomi from her bed to the bedside toilet. She was very weak and had no balance whatsoever. I was surprised that she could even stand up.
She sat there as we went through our normal potty routine but was in obvious discomfort. Her back was painful and her butt is so skinny that she “falls in the hole”.
Her balance is so bad she can fall off the toilet. This is shocking to see. This bedside toilet is like an armchair-the only way you fall out is forward head-over-heals. I just keep my arm across her lap like a safety belt and catch her whenever she leans forward.
We were getting ready for me to carry her back to bed and she gathered her composure.
She looked at me and said “Diaper?”
I wrote on the dry erase board, “The potty is too hard now. It’s Diaper time.”
She nodded.
I got her back in bed and tucked her in. It took a few minutes but she went back to sleep.
It’s entirely likely that she won’t remember this discussion.
2:00pm UPDATE: She asked to go potty. Instead I put her on a bed pan. She didn’t understand and couldn’t use it. I’m sure we’ll try again in a few hours.
It’s Friday morning and Satomi mostly conscious but confused and a little delusional.
But…she’s also in pain…What? How can that be?
It’s not the crazy “roll around holding your head” pain but noticeable discomfort in her head and back.
I was warned that a 25mcg/hr patch may not be enough but I didn’t want to risk sedated her until absolutely necessary.
We’ll see how it goes today. If it’s a matter of cold-compresses, back rubs and changing bed position, we can make that work.
Anything more and we’ll have to weigh our options.
3:30PM UPDATE:
She’s had a seizure today while the Aide was giving her a sponge-bath. Satomi is restless and has back and head pain. She’s easily confused and can’t focus so I’d say she’s only partially conscious; In other words, she’s partially sedated. I had to give her a partial dose of Oxy and Ativan to get her to sleep.
The RN arrived this morning and I reviewed our pain versus sedation quandary. She agreed that things are sensitive and advised that I should delay the next patch as long as possible and treat her pain with the Oxy.
Satomi's Cancer Blog 