Satomi's Cancer Blog

Today was a very stressful day for me but I now know that I was just being a dope.  I thought today was the “three weeks” deadline that Satomi had mentioned before.

See my “Emotional Plea post from 2/28/11 and Defense Mechanism post from 2/23/11 if you don’t know what I’m talking about.

I obviously cannot read a calendar.  The actual “three weeks” deadline is next Wednesday March 16th.  I’ll worry then.  Remember:  One Day at a Time!

As Thursdays go, it started off well.  The street sweeper arrived 30-minutes early so there was plenty of parking for the crowd of visitors today.  Cancer Group Tina, Acupuncture Tina, Irene, Brenda, Brenda’s daughter, and Brenda’s grandson.  How all of them fit in that itsy-bitsy room is beyond me.  It sure seemed like they were having a good time.  I avoided the estrogen and sat in my room and tried to work.  Satomi was groggy and her response was minimal.

After most of them left, it was a chance for Satomi to sleep.  Her temperature got a bit elevated so we just covered her with a sheet.

I took the opportunity to dig out our wedding albums.  I had forgotten that we had three of them:  main wedding and reception photos, black and white reception candids, and an album for our dinner reception in Hawaii.  I sat with Kandice and Jillian and showed them how pretty Mommy looked.  Jillian kept asking why they weren’t in the picture and who that strange man was standing next to their Auntie.  I explained that they weren’t born yet and that strange man was her Auntie’s first husband.  I just know there’s going to be more questions about the ex-husband thing in the future.  Kandice just wanted to see the pictures with Satomi and I kissing.  Giggle, giggle, giggle.

During my excavation for the wedding albums, I also found several boxes full of Satomi’s childhood photos.  There’s a lot so it’ll take a while before I can sort, scan, and post them.

Throughout the day she drank about 6 ounces of water and juice and didn’t eat much of anything.  I was surprised that her pee output seemed a bit elevated.  The Poo monster tried to attack but it was such a pitiful attempt, I just laughed and quickly tidied it up.

A few minutes prior to getting her bedtime meds, she seemed to finally wake up.  She responded to my waves and stupid gestures.  She actually blew kisses back at me.  It’s been nearly a week since I got a response like that.  I was so happy even if it was for only that short time.

After getting her meds, she quickly went right back to sleep.

Sorry that I didn’t post last night folks.  I know that apprehension increases with a lack of information.  I had a lot on my mind and instead of drinking a 6-pack, I tried to focus on work for a while.  And then I fell asleep.  So again, sorry about that.

Satomi’s Wednesday was sleepy-just like her Tuesday.  A couple of minor seizures that are almost unmentionable now.  The only real word she spoke was “OOOOOOWWWWW” whenever we moved her around.  The rest of the time, she had a blank stare.  It was a bit upsetting to see as I don’t enjoy being stared at anyway.  I gave all her medication in suppository form because choking on the oral meds remains a real worry.

I try to be efficient when the RN comes.  I gather my thoughts and check my meds inventory.  Writing this blog really helps organize my thoughts.  It goes fast so I feel like I’m a paramedic transferring a patient to the ER.  Yes, I’m a dork.

We talked more about her dehydration and food intake.  We also talked about more techniques to minimize bedsores.  We modified her sleep shirts to be quasi-hospital gowns.  Cut those suckers right up the back.  That way, the shirt won’t bunch up.

Our rolling her onto her left and right seems to be working to reduce back pressure and it also does a great job stretching her neck muscles.  Her lack of muscle tone causes her head to flop around so her neck is very painful now.  I’m picking up a neck pillow today.

She sat awake much of the afternoon but again didn’t respond to much.  Her visitors got a glance.

Bedtime was uneventful but again she wasn’t conscious enough to swallow so everything went the other way.

Sleep went easy and quiet.

This morning sucked.

The catheter bag hose came lose sometime last night and the bed was covered in her super-strong-take-tons-of-drugs-don’t-drink-enough-water-acid-pee.  It soaked through all her sheets but luckily was restricted to her legs and butt.  She didn’t know the difference but the idea of her having to lie in it just enraged me.  All this pain and a wet butt?  Damn.

Luckily I didn’t have to change her sleep shirt but diaper, liner, a couple of pillows and all linens were just soaked.  We changed the bag yesterday and somehow the hose wasn’t pushed on all the way.

Who am I kidding?  I know exactly how it wasn’t pushed on all the way.  It was an honest mistake so I have no intention of reminding the responsible party but I can guarantee all of you that hose will NEVER come off again.  My rage strength is still quite formidable.

We had to roll Satomi back and forth so she wasn’t a happy camper.  It went smoothly and quickly but it stressed me out.

Besides that it seemed to be a restful day.

I was told that Satomi was awake for most of the day but her communication seems limited to glances, nodding, a whisper or two, and moans of discomfort.  She usually puckers for kisses but today, she didn’t for me.  I made gestures and talked to her and asked questions.  All I got was a blank stare.  I really don’t know how conscious she is now even with her eyes open.  It sucks.

There were only a couple of instances that required a bit extra Oxy and Ativan.  She ate half a cup of apple sauce and a few ounces of juice and water; not a lot but better than none.

I rotated her onto her left side and her bedtime meds went fine.  She’s sleeping soundly now.

Maybe it’s me being psycho but I smell that acid pee wherever I go.  I’m going to wash my hair now.  Yukk!

Good night all.

What the hell?  A sleepy day?  Not expected but welcomed when you consider the seizures she had over the weekend. We had to forgo any meds that couldn’t be administered another way.  No food or drink all morning.

The RN showed up and we discussed her condition in detail. She thought the seizures were a sign of tumor progression especially since there were no other factors.  She couldn’t say for sure.  I mentioned the slight temperature swing but her opinion was that a couple of degrees would make no difference.  She instructed me for future seizures to: 1) administer valium instead of waiting.  It should relax her and reduce seizure related muscle pain; and 2) do not use my sternal rub technique to wake her.  It won’t make a difference and will only cause her pain.

She trumped my sternal rub thing because Satomi had a big ass bruise on her chest from the accumulated rubbing through all of her seizures.  I rubbed pretty hard so it doesn’t surprise me that I left a mark.  I feel terrible about it.  Here is an out-of-focus picture of the bruise.

Sorry it’s such a bad picture.  I had to take it up close.  Any farther away and you’d see her boobs.  Remember her sternum is her upper chest bone under her larynx.  It’s about three inches across.  Yikes!

The RN showed me indicators of dehydration all over Satomi’s body-cheeks, abdomen, legs, and hands. The pee color is also very dark.

We spend a lot of time on bedsore prevention.  It’s going to be a real effort to keep her properly supported and varying her position enough to maintain her skin condition. She only has the single bedsore now but we predict that there are more to come shortly.

We need to roll her onto her right side and then change to her left side every two-hours all day. Her ankles must be raised above the bed surface at all times.  Her arms and head should not come into contact with anything hard such as a bed rail.  It all makes sense so I’m not worried but it’s just more pain for Satomi.

After her sponge bath, Satomi was very lucid and was talking a bit with her Mom.  I was surprised and happy.  It stayed that way until just before bedtime.

I prepared her bedtime oral meds and walked over to Satomi.  Before I had a chance to give her the meds, she tried to speak to me.  I paused and asked her to repeat it a bit louder.  She gave me a funny look and a few seconds later proceeded to barf all over her clean linens and bed shirt.  I had no idea what was coming and I just freaked out.  I had to leave the room and jump up and down.

Now my semi-quiet evening would be filled with barf covered things.  Yukk!  I gathered up the cleaning supplies and spare linens and get to it.  A few minutes into my efforts, I smelled something awful. What was that?!

I move her blanket and start poking around.  The Poo Monster has attacked!  This is getting pitiful.  Both Barf and Poo?  I had to leave the room again…damn, damn, damn.

Thirty solid minutes and a ton of cleaning supplies later, our lives are again at peace.  That was a lot of work.  Ahhhh!!!!

Satomi stayed awake until bedtime and took her meds just fine.  She’s sleeping now and I’m beat.

Good night all.

Satomi slept away the afternoon with no issues.  Her family arrived to spend some time with her and feed me some cake.  It was nice but short.  Her sleep was very deep-I couldn’t wake her so I administered the bedtime meds in all-suppository form.  I also had to change her diaper.  It was a nasty mess.  Overall it went smooth.  No complaints and only a few grunts of discomfort as I moved her around.  I didn’t bother with the extra Ativan and Oxy since she was already passed out.  So that’s it for the night.  I’m going to have another piece of cake!  Sweet dreams all.