Satomi's Cancer Blog

Satomi’s pain is not under our control.

Since the patch removal incident last weekend, addition of more patches and early replacement on Tuesday, things have been swinging around.  Satomi’s either sedated of holding her head in agony.  It’s not as bad as the first major headache all those Saturdays ago but no less serious.

I had to give her a partial dose of Oxycodone in the morning and in the afternoon with several Ativan doses in between.  Last night it took two full doses of these meds to finally knock her out.

She’s had headaches and back aches intermittently all day.  Her right arm is also suffering from what seems to be nerve pain possibly stemming from the tumor itself.

She had a few spoonfuls of tofu in miso soup a little while ago.  Besides water that’s about all she’s had all day.

I was warned that as the medication dosages increase, control would be more and more difficult to maintain.  It couldn’t be more obvious to me than right now. 

I am working on the problem and hopefully things will “return to normal” by this weekend.  Hopefully.

Update 7:45pm:  The pain didn’t subside…it actually seemed to get worse.  So I sedated her.  She got all the Ambien, Ativan and Oxycodone that she could handle.  It’s only been 10 minutes but I think it worked.  Pain-free and quiet.  It’s so early that I may have to dose her again but I really hope not.  It’s just getting so much more complicated.  Crap.

Update Friday 1:30am:  She’s moaning in pain again.  It must be bad since it woke her from a sedated state.  It’s been almost six hours so she’s getting a full dose of Oxycodone and Ativan.  She’s calming, rolling over, and is returning to sleep.  I expect that tomorrow will be a sleepy lazy day.

Update Friday 8:00am:  Sleepy but responsive-Not comatose.  Satomi has visitors schedule for later but I may delay them so she can catch up with the sleep.  I’ll try to get better control of her pain this weekend. 

Ok so it’s mean that I refer to my lovely wife as “nuts” but I actually thought this exchange was so funny I wanted it to be as accurate as I could remember.

Sean:  “You need to get your meds.  Roll over”.  I gesture at the wall and hold up the bullet-shaped laxative.

Satomi:  “You’re too rough with the suppositories”.

Sean:  “Maybe.  But you don’t want it to pop out.”  She just sees my mouth move so I give her a Cheshire Cat smile and nod.

Satomi:  “You’re too rough.  The RN was very slow and gentle.  The RN said you’re too rough”.

Sean:  I pause, put down the laxative and grab the dry erase board and pen.  “The RN wasn’t here when I gave you your last laxative.”  This is where it gets weird.

Satomi:  “My ear hurts.”  She rubs the big bandage I used to cover her left ear.

Sean:  “What does your ear have to do with your ass?”

Satomi:  “The RN said you were to rough and that’s why my ear hurts.”

Sean:  “So, you’re telling me that an RN that wasn’t here to know if I’m rough or not, said that I was too rough when I put a laxative suppository in your ear and that’s why it hurts.  Did I get that right?”

Satomi:  “Yes…”

Sean:  I stare at the board for a second and keep a straight face.  I re-read it to make sure I didn’t make a mistake.  I calmly write again but this time I circle the words “ass”, “ear”, and “suppository”.  “Did I get that right?”

Satomi:  “Yes…”

Sean:  “Seriously?  Damn, you are just nuts…” 

Anyway, her rant worked.  From then on, I medicated her gently and slowly…

Satomi has been very lucid these past few days and it’s been great.  She’s talking and enjoying herself and living life.  During the quiet times though, things are much more solemn and she get’s angry much more easily. 

Somewhat expectedly, the anger is directed at me. 

Sometimes I deserve it.  Like the time I  forgot to use Vaseline before “medicating” her.  There was definitely a few seconds of discomfort before I caught my mistake-Oops! 

Most of the time, it’s due to a bad mood and a stupid misunderstanding.

The other night I caught Satomi peeling off her Fentanyl patch.  All of you should remember that this patch is her primary pain-killer and is about 100-times stronger than morphine.  It’s a time release medication that is absorbed through the skin directly into the bloodstream.  Her peeling it off not only disrupts the absorption of the medication but it can be transferred to her hands and subsequently to her eyes, face, etc. 

I explained it to her many times using our favorite dry erase board so I was confident that she understood.  In case she forgot, I covered the patch with a big water-proof bandage and several inches of medical tape.  I prepped her skin with alcohol beforehand so that sucker would stick better than crazy glue.

I underestimated our girl.  She scratched and picked at that tape edge for a long time before it peeled off.  By the time I noticed, she had part of the bandage and half the patch pulled back.  Another 5 minutes and she would have gotten it all.

I flipped out accordingly, “No!  What the hell are you doing?”

“My back was itchy and there was this tape thing stuck on it.”

Overtly gesturing like a lunatic mime, I try to explain what happened.  She looked at me with a “Huh, what?” look.  It was obvious she didn’t know what I was talking about.  Time for action.

I roll her over, pull her hands away from the patch and immediately put it back on her lower back.  I pull down her nightshirt to cover it.

And then she got mad and started yelling and yelling and yelling.  Everyone could hear her-downstairs, outside, down the frickin street.  I was so frustrated and angry and embarrassed.  I tried to shut her up but she ignored me.  Her position was basically that I had no right to get mad at her.  She interpreted my lunatic gesturing for anger. 

I admit that I’ve been over-exaggerating my body language to impart some “emotion” to our “discussion” but as I’ve found, this can easily be misinterpreted.

I tried to explain that I was doing it for her own good but she had none of it.  I tried to explain about the patch but I was too frustrated to explain every little detail.  The only reason I didn’t lose my composure was because I truly believed that Satomi would have agreed with my actions if she was able to fully understand what was going on.

After much effort and many full dry-erase boards she calmed down and seemed to understand.  I told her the patch wasn’t sticking anymore and the medication flow was disrupted so she could experience pain.

She sat there for several minutes gathering her thoughts before she spoke “…I’m 43 years old and I’m gonna die…”

The underlying emotion driving her frustration and anger became obvious.  We sat and talked and cried together until she was so exhausted, she fell asleep.

That was the theme every night-misunderstanding, frustration, anger, emotional outburst, exhaustion.  

The only variation to this storyline was the triggering situation: 

• The bed’s too lumpy.
• The bandage on her ear is too big.
• Hate the “no pee on the potty if you have a catheter” policy. 
• I insert her medications too fast. 
• It’s cold in here. 
• It’s hot in here. 

I think you get the idea.

During the day amongst all the visitors and activities, Satomi’s been sharp and happy and energetic.  But at nighttime, when we’re alone, she’s been sad and upset and depressed and emotional and frustrated.

There is a downside to all these good days.

I thought you all may get a kick out of this short photo montage of our silly little girls.

Satomi does look tired but the girls energy makes up for it.