Satomi's Cancer Blog

I cut Satomi’s bedtime meds again and prepared for the Poo Monster to return.

Instead of the two Ambien she’s usually taken, she only took half of a single tablet.  Her oxycodone was maintained at a low 0.25ml but her Ativan remained at normal levels.  She awoke at 8:30am.  Her eye’s were open but her speech remained limited and slurred.  She took all her medication including her oral tablets.

I had given her a half dose of the infamous Milk of Magnesia in the early evening.  There was no sign of the Poo Monster so at bedtime, I laid out the disposable liners all over the floor, placed the glove and wipes boxes on the bed, and emptied the trash can.  With our luck, it would attack in the middle of the night.  I went to bed spectacle.  As of this morning, there was no sign of the Monster yet.

As the morning progressed, some of Satomi’s friends arrived for a few hours.  Satomi greeted them and ate a few bites of yogurt and apple sauce.  She even tried a few sips of fruit smoothy and had some of the fortified fruit juice.  We pushed water all morning.  There were a few scary moments with gagging but nothing serious.  This afternoon, I fed her the remaining yogurt and apple sauce left over from breakfast and more water.  I was very happy with that.

It’s now 4:45pm and Satomi is lying here in bed with one eye open.  She is in a daze and doesn’t talk when I prompt her.  Her breathing is a mix of gasps and short shallow breathing.  In any case, she’s tucked in, comfortable, and in no pain.

The results so far are promising so I plan to NOT give her any Ambien tonight but maintain her minimal Oxy and normal Ativan doses.  If the Poo monster doesn’t arrive, I may administer another dose of MoM.  We’ll see in a few hours.

Sleeping, sleeping, sleeping.

The hospice aide, Rosa, was coming so I woke Satomi and gave her an ounce of fortified juice.  (I say “fortified” because it has some extra anti-oxidants added).  It took a while since it was a partial teaspoon at a time.  So far she hasn’t vomited it out. 

The aide just arrived and is giving her a sponge bath.  Satomi is awake now but not communicating.  All of her joints hurt so it’s difficult for a single aide to move her without pain.  I’m here to help.

We just rolled Satomi from side-to-side.  At first she looked upset and even scared.  I think it was the anticipation of pain.  I held her with one hand and supported her head with the other hand.  I talked to her and even without her glasses, she knew it was me.  I think it comforted her.  What’s most important is that SHE HAD NO SEIZURES.

We proceeded to dress her and I spoke with the aide.

Rosa:  “I’m glad you’re here.  The seizures before were scary for everyone.”

Me:  “Thanks.  Satomi asked me to stay home so I can help more.”

Rosa:  “That’s good.  I had a client that was being taken care of by his daughter.  The daughter had to go back to work so they hired a caregiver.”

Me:  “Sounds familiar.”

Rosa:  “The Client is not the same.  He refused his shower and he loves his shower.  He was so much better when she took care of him…”

Me:  “I agree.  There’s no love there so its different.”

Satomi and I have never been an overly affectionate couple (No matter how many times I asked-Just kidding.) but the closeness now cuts past the crap and just soothes her anxiety.  I am where I need to be and nobody else could give her what I can.

Satomi’s always been a strong woman.  Even after all these years of marriage, I never felt that she completely let me in.  There was always some reservation.  Needless to say that I don’t feel like that anymore.

We put lotion on her and she cleaned Satomi’s fingernails.  It went well.

I took the oppurtunity to try to feed Satomi.  I am happy to report that she ate nearly an entire cup of apple sauce and almost five ounces of water.

All cleaned and fed, she fell back asleep.

When we entered hospice care back in January, we received a folder containing a lot of information:  Satomi’s vital information, policies, procedures, limitations, rental contracts, drug information, schedules and the like.  I reviewed it as I would any important document.

But there was one article inside that I just couldn’t bring myself to read.  It was called “Signs and Symptoms”.  That’s a lie; that’s not its full name.  It’s called “Signs and Symptoms of D_ _ _ _”.  I haven’t used the “D-word” in many months so please forgive me; it puts me in a bad place.  By the time you finish this post, the definition of the “D-word” will be painfully obvious.  I’ll call it “SSoD” for short.

There are many signs that the “hospice process” is proceeding.  SSoD is meant to inform so all we know what’s about to happen.  I’m going to paraphrase to save space.

Sleeping

It will increase as the body weakens due to the slowing metabolism.  There are times that we won’t be able to wake her at all.

Eating, Drinking, & Swallowing

She will have no interest in eating or drinking as things progress.  This is also due to the metabolism slowing.  Swallowing will become increasingly difficult.  The SSoD says that liquid intake will become a function of dryness and not dehydration.

Weakness & Confusion

She will be increasingly confused.  This is due to reduced oxygen flow and chemical changes in the body.  Her alert time will decrease and her sleeping will increase.

Breathing

Breathing will become very irregular and sound labored.  There may be periods of no breathing for up to 20 to 30 seconds.  This is a type of sleep apnea.  Initially it will be deep but will progressively become shallower and slower.  At that time, oxygen is appropriate.

Congestion

As she becomes weaker and dehydrated, she may not be able to easily cough up any mucus.  Breathing may sound differently.

Incontinence

Loss of bladder and bowel control will occur.

Pain

This is our primary issue and is to be monitored and controlled using techniques already in place.

Restlessness

It is a sign of oxygen deprivation.  Pulling at linens, moving in bed, trying to sit up, and the like are normal.

Body Temperature & Circulation

The chemical changes could induce temperature swings.  Reduced circulation may result in cold or discolored extremities.  The underside of the body may darken and the pulse may not be perceivable in the limbs.

Urination

Urine output will darken and frequency will reduce as water input decreases.

Unconsciousness

As mentioned in “Sleeping” above, there will be times that she won’t respond to any outside stimuli.

Withdrawal & Socialization

In the later stages, she will withdraw from her surroundings.  It is possible that she won’t want many visitors.

Hallucinations and Gestures

She may start to see and speak with others in the room that are not visible to all of us.  In some instances, she may do or say things out of her nature.

Other Information

The document also contains instructions on what happens next-who to call, etc.-and a lot of information on emotionally supporting the patient during their time of “transition”.  I’m not emotionally stable enough to write about that yet.

When I first got it, I knew what it was and it scared the crap out of me so I actually forgot about it.  Denial is a powerful tool. 

I only read this a couple of weeks ago.  I couldn’t ignore it anymore.  I had to be sure I was best prepared for what was to come. 

Afterward, I was sickened and relieved at the same time.  I’ve learned a few things these past months so this information wasn’t anything really new but to see it in writing gave me cramps. 

Even writing this post is giving me a huge headache.  But I can’t complain though.  I mean, how can I?  Just look at Satomi’s pain.

Satomi slept all day.

She slept right through her morning meds and Fentanyl patch changes.  I was told that she slept right through lunch and visits from her friends.  She awoke for a brief minute after lunch and got a few spoonfuls of juice but not food.

Satomi’s breathing is unusual and alarming.  It’s 3 to 5 seconds of nothing followed by a sudden gasp.  It sounds like she forgot to breath and then suddenly remembers.  I’ve seen it before at night but I don’t recall it during the day.  From what I have read, this is normal.

Overall, the day was uneventful-exactly how I like it-but some eating would have been nice.  

It’s 4:30pm now so we’ll see how the rest of the evening goes.

9:30pm UPDATE:  She slept solidly until I administered her bedtime meds.  My rolling her over woke her.  After giving the meds, I took the oppurtunity to feed her some apple slices and a few ounces of water.  That’s all the food she ate today.  I tucked her back in and she went back to sleep.

The meds remain less than half her previous normal dosage.  I’m concerned that even this reduced dose is too much for her slowed metabolism.  In any case, she’s not in pain or freaking out so things are ok over here.