Satomi's Cancer Blog

I mentioned to her Mom that I needed photos of Satomi’s Odori and the next day I got a dusty bag of old photos.  Apparently she couldn’t find any of the albumns but these were the loose extras.  I took a look and it was exactly what I wanted.

Here’s our Satomi at five years old.

I’m asking around who the girl in the upper left is-I have an idea but not positive.  Satomi is the white-faced cutie on the upper right.  Her sisters are on the bottom.

Here’s Satomi (standing) before a performance with her sisters and sensei.

This is after a cultural performance when she was in high school.

She was always in parades and at Obon festivals.  I can’t tell how old she is when she’s in the garb.

In this one, she is practicing before her Natori “recital”.  To receive her Natori she had to perform a regime of dances on stage in front of an audience of several hundred people.

Today hasn’t necessarily been a bad day but there were definitely a few things going on.

She awoke at 6:30am and sat quietly; It’s quite reasonable since I gave her no sleep aid last night.  There was no pain but lucidity was mixed.  She ate a cup of apple sauce and some juice but she gagged a bit afterward.  She kept it all down but I delayed her morning meds to give her some time to absorb the nutrition.  An hour later, she took her medication as normal.  She slept intermittently until lunchtime.

We tried to feed her again but she refused everything except for a few sips of water.  She had two minor headaches in the afternoon-the first was addressed with 0.25ml of Ativan and the second was with a cool towel and a head massage.  There were also signs of some agitation and back pain, “Sit me up.  Move me to the side of the bed”.

This is disturbing for two reasons:  1) the pain was high enough to exceed her baseline dosage and 2) her consciousness did not improve accordingly.  She remained awake all afternoon and stared into the distance.  She didn’t talk much at all.

9:30pm UPDATE:  She was semi-conscious and took her bedtime medication just fine.  Her left ankle is really bothering her.  I repeated last nights restricted medications and she bedded down for the night.  No issues.

In my “Defense Mechanism” post from last week, I mentioned Satomi asking me to stay home but I didn’t describe how she said it.  It’s been nearly a week and it has stuck with me.  I wanted to share it with you.

Me:  “I’m going to work now.”

Satomi looks at me and whispers, “Come…closer…come…closer”

I move closer and answer, “what’s wrong honey?”

Satomi:  “I need to tell you something.”

I hold her hand and get only a few inches from her face, “what’s wrong honey?”

She gazes into my eyes and her expression changes.  For a split second before she speaks, I can so many emotions-vulnerability, sadness, fear.  With a wavering voice, she says “…I can’t do this for three weeks…Don’t go to work…”

I stare into her eyes and I am emotional.  I struggle to decipher my feelings-shock, fear, intimacy, confusion.  The emotion that bubbles up first is confusion, “…where did three-weeks come from?”  I checked our calendar so I know that date has no unusual significance for us.  Is she saying that she only has three-weeks to live?  Oh no… 

In all of our years together, Satomi has never been so vulnerable-never.  Her vulnerability surprised me but it also triggered a new level of closeness.  I would do anything for her and if the roles were reversed, I know she’d do anything for me.

She didn’t understand my initial response but I’ve been home everyday since.  I remain convinced that this is where I need to be.

Poo is a played out subject.  At least to me anyway.  How can I write about it and make it fresh?  Well, the writing anyway.  For me to even consider writing about it, things have to really stand out from the norm.  I mean, I deal with that end of the body several times a day.  On Saturday, I had a memorable poo moment.  Different than the rest.  I just knew I was going to put fingers to keyboard.  Sorry it’s taken a few days.  I had to let the experience sink in.

Milk of Magnesia is some strong stuff but with Satomi’s changing metabolism, I couldn’t predict what would come from administering it.  It had been nearly a week since she had any noticeable movements.  We had tried softeners and suppository laxatives and the result was mediocre.  Even considering the lesser food intake, we all felt it necessary to clean her out.  So I gave her a half-dose of MoM on Friday evening, many extra sips of water, placed an extra “pull-up” diaper” on her for (my) safety, and prepared the room for battle.

I laid out liners on the floor and on the edge of the bed; an open box of gloves and a full box of wipes to within easy reach; and the trash can close but out-of-the-way.  Anything that wasn’t absolutely necessary was taken out of the room just in case things got out of hand.

Friday night and Saturday morning came and went.  Every hour I’m doing the parental poo verification technique of smelling the diaper.  Nothing but the pleasant smell of baby powder and clean diapers.

Late Saturday afternoon we had our first signs of something-a grape-sized nugget.  That’s it?  I was getting frustrated.  What the hell?  Maybe she really didn’t eat enough to need a poo?  Maybe I should have given her a full-dose of MoM?  

It’s not gushy or messy so reach in with a gloved-hand and pull out the lump, wipe up a few poo marks and leave the rest of the defenses in place.

I feel guilty about leaving Satomi in dirty diapers.  It’s now Saturday evening.  I visually check for poo and the coast is clear.  My gut tells me the attack is still imminent but I decide to take the opportunity to do a quick diaper swap. 

In these past few weeks, I’ve honed my in-bed diaper changing techniques.  I’m fairly confident in my abilities but this evening I was all alone.  If I could play some foreboding music, I would cue it up now.

I gloved-up, laid out a half-dozen wipes on the edge of the bed, grabbed the spare diapers from the pack, pulled back the covers and went to work.

Snip.  Snip.  The outer diaper was lose and I rocked her side-to-side slightly to slide it off.  This one is easy since it’s clean and the diaper doesn’t stick to itself.  My back starts to hurt because I’m hunched over the bed but for now, no big deal.  Diaper in the trash.  Satomi is starting to wake up.

Snip.  Snip.  The inner diaper is the dirty one from earlier.  Not bad but definitely some skid mark stains.  I rocked her side-to-side but the plastic is sticking to her skin a bit.  It didn’t slide well.  I should have used baby powder beforehand-Oh well, too late.  I gently grab both legs and rotate them upward toward the ceiling to lift her hips off of the diaper.

Foreboding music gets louder.

BAAAAAAMMMMM!  A poo explosion!  Well, more like somebody stepping on an open tube of toothpaste.  Damn Poo Monster!

I drop her legs back down and grab handfuls of gloves and wipes and dump them all on the foot of the bed.  I pull the trash can closer.  Once I start fighting, I know that I won’t be able to grab them later.

I lift her legs as high as I can without any complaint from Satomi.  I get a close view and the toothpaste is still gushing.  I quickly evaluate my options and I decide to grab a wipe and jam it into the middle of the foray. 

After a few seconds, I reach in and scoop it out and dump it into the trash can.  Jam, scoop, dump, jam, scoop, dump, jam, scoop, dump and on and on. 

Many minutes and many wipes go by and my hunched back is aching.  The poo is slowing down so I change into cleaning mode.  Instead of scooping, I’m wiping-jam, wipe, dump, over and over.  The cleaning is progressing but random poo chunks still arise; I just grab and throw them into the trash directly. 

Her butts getting cleaner so it’s time that I remove the nasty diaper that is still under her hips.  I change gloves and change my grip on her legs.  I rotate upward again and slide out the diaper.  Luckily, the monster hadn’t decided to climb up her back.  I toss the engorged diaper into the can and wipe frantically.  I grab a disposable liner and quickly tuck it under her now semi-clean butt.  I keep wiping and cleaning and Satomi is still staring at me.

Things are calming down but I don’t trust the monster-the sneaky bastard.  I look at Satomi and I ask “Are you done?”  No response so I repeat.  “Are you done?”  She finally nods but I realize that I’m being a fool.  The monster can trick anyone.  I decide to check for myself.

Loud foreboding music again.

BAAAAAAMMMMM!  A second attack!  But this time, I was ready.  My hand scooped it up as it shot out.  I really hope these gloves hold out.  It would really suck if there’s a hole in them somewhere.

Three or four scoops, a new set of gloves, and a couple of wipes later, things are clean and quiet again.  But I don’t trust the monster so I checked again.

BAAMM!  A third and obviously smaller attack!  Same plan.  Two scoops, remove the liner and cleanup.  The worst is over.

Two new diapers, tuck her in, dump the trash and reorganize.  Satomi is fully awake now and just staring.  She’s comfy and clean again.  I’m done. 

I’ve been hunched over for over 20 minutes and my back is just screaming.  I may have won the battle but my wounds will be long-lasting.

Satomi slept 95% of the day.  She acknowledged some visitors with a raised hand and extended glance but with no conversation.  She drank a couple of ounces of juice and water and ate a few bites of apple sauce.  We tried to give her chocolate cake but were unsuccessful.  I gave her the same bedtime medication as yesterday per my earlier plan.  She went right back to sleep afterward.  She had no instances of pain or agitation today except a bit of joint pain when I rolled her.  I hope her consciousness improves tomorrow because today was just too limited.