Satomi's Cancer Blog

Satomi’s PT school friend Charro and her daughter Sydney dropped by for a visit.  Kandice was home early from school and joined the fun. 

Satomi looked so happy, I just had to post this picture.

Today is a good day.

In these past weeks since my meetings with Rose Hills and Fukui, Satomi and I have discussed her wishes.  As you can imagine, it was a difficult and emotional discussion.

Well, mostly…

Sean:  “So do you want a niche or a plot?”

Satomi:  “A what?”

Sean:  “…hole in the ground or cubby hole in the wall?”

Satomi:  “Oh, either is ok.”

Sean:  “I like the idea of a niche at Rose Hills.  I don’t want anyone to be playing football or barbecuing on my head.”

For those of you that haven’t been to Rose Hills on a Holiday, let me tell you that I’ve seen people tailgating, picnicking, and playing football there.  Yes, at a cemetery.  I was frickin appalled and continue to be so.

Satomi:  “A niche is fine.”

Sean:  “Are you sure?  There is an urn plot available near your Dad.  Do you wanna be near your Dad?”

Satomi:  “As long as I’m in Rose Hills.  I don’t have to be right by him.”

Many jokes come to mind about her rebellious childhood but I decide to move on.

Sean:  “So a niche then?”

Satomi:  “ok.”

Sean:  “What sort of view do you want?”

She gives me a crazy look.

Satomi:  “What?  View of what?”

Sean:  “Uhhh…waterfall, city, inside a building, in a courtyard…you know…a view…”

She seems a bit perturbed.  With some attitude she says, “I’m gonna be an angel…floating around…so I’ll have a good view of anything I want!”

Sean:  “…alley view it is…”

Satomi seems weaker today.  She has trouble rolling over in bed and had to call me to help.  She still stands ok with assistance but I’m sure the twenty-four inches that she must walk between the potty and bed is her limit.

Yesterday she had her first seizure in over a week.  Today she had another one.  They were both relatively minor and only lasted a minute or so.  She was mostly conscious during her seizure today and responded positively to my inquiries.  But even so, her body trembled and she repeated herself; Her speech was slurred and her gaze was distant.  As normal, she had a headache afterward. 

As I mentioned in my previous post, I am concerned how things will change as symptoms progress.  I use several techniques to manage my emotions.  One of the most fundamental is a daily routine.  The routine brings familiarity and eventually results in confidence.

What comes next will not be routine so we’ll have to figure it out all over again.

Our battle lines were tested again last night by the curst Poo Monster.  The slimy bastard snuck past our defenses using Ninja tactics.  It somehow convinced our Satomi that it wasn’t there.  I had my suspicions so I asked her repeatedly before her evening “medication”.  I was assured that the coast was clear so I proceeded as usual.  After a short 20 minutes, we were quietly attacked.  I didn’t even realize that the attack occurred until I made my rounds and noticed an unusual smell.

“What’s that stench?  Where’s it coming from?”

I pulled back the covers to take a closer look.

“Damn Poo Monster!  Frick!  Frick!”

The recently administered medication became collateral damage.  It lied helplessly next to the body of the monster.  It was too late for the largely intact  suppositories as they were now a gooey mess. 

I was so upset about it.  Our medication reserves had run low over the weekend and re-supply had yet to be scheduled.

The carnage of the attack was addressed using what has become our standard SOP-transfer Satomi off the nasty sheets, liners on everything, many, many glove changes, and a hell of a lot of wipes.  It was straightforward and went smoothly.  No spills, drips, or splashes.  I won’t bore you with the graphic details.

It went so smoothly in fact, that I had time to ponder the future.

I know that the monster is conserving its strength for an oppurtune moment.  It wants to exploit our weaknesses and that time is coming soon.  Satomi is getting weaker and will one day not be able to leave the bed.  When that happens, all our SOP’s are out the window.

I spoke to the RN about this and she instructed me on her own techniques at containing the monster.  The training and discussions were insightful but I am reluctant to adopt them.  I try to keep Satomi as clean as possible and these techniques are a compromise. 

This will take further study and experimentation.

Our friend, Peggy was nice enough to bring some Manju when she came to sit with Satomi yesterday.

For those that don’t know, it’s a traditional Japanese confectionary that typically stuffed with sweetened beans of various types.  It is quite popular.  Here’s a picture of a typical box.

Unfortunately, Satomi HATES azuki (black) beans and well, just about every other sort of bean out there.  Except for maybe edamame (soy beans). So I dug throught the box and found one filled with a white bean of some sort.

Anyway, I decided to give her a small piece this morning just as a treat and a small change from the normal routine.  

I was feeding her, alternating spoonfuls of miso soup, brown rice, some Korean seafood salad, juice, soup, rice, salad, and then I swapped in a bite of the manju….

“Anko Yukk!”   

Eating quickly stopped and drinking water started.  There’s no getting anything past her.

It was hilarious.