Kicking Butt, Taking Names

 Steph’s four year struggle with cancer is over. She died quietly on June 7 while her Keeper (brother) and Alternate Keeper (mother) were at her side. Even after 4 years, it was a shock to see her go so soon. She is already missed.

We followed her wishes and had no funeral service and had her cremated. We are contemplating having a “Celebration of Life” to honor her. Details have not been worked out.

 Today's blog entry is made by Steph's mom.

Steph started having a lot of pain on the 13th so she called Hospice.  They had her start taking a drug from the "Comfort Kit" (medications are administered by her keeper or alternate keeper).  This has caused her to be very loopy and unable to use the computer.  

Next post when we can.

It's been almost a week since I last blogged. I apologize. For a while, there just wasn't much happening then there was a bit too much happening. 

Tuesday was Family Work Day. I haven't been out to see their handiwork yet, but the family is very pleased with their work at cleaning the stuff away from around the sides of the house to get ready to paint the exterior. So I'm pleased that it's coming closer to the day I can call to schedule the date.

Wednesday was hospice nurse (AKA Case Manager) visit day and all was well. OK, as well as they had been the week before. Both Mom and my keeper were present for the visit so my two keepers and the case manager could get to start knowing each other.

Thursday was mostly a nothing happening day. I got a nice 4- to 5-hour, drug-induced nap. But in the night my pain got worse by a goodly increment. This concerned me, but not enough to track down the hospice number in the middle of the night to call.

Friday my cousins were in town for a long weekend and came for a visit including sandwiches from Togo's. In the meanwhile the pain was continue to sharpen a lot when I started moving in particular ways, so I rounded up the hospice number and called to leave a message for my case manager (CM) having to go through one of the triage nurses first.

Well, she called me back in about a half hour and the great 3-way discussion started between me, my CM, and the doc, my CM, me, the CM, the doc... Lather. Rinse. Repeat as needed. So, we got a new "Comfort Plan" that included the Methadone (the drug usually associated with heroin withdrawal), no dilaudid (this changed later), and add oxycodone (to swap for dilaudid). He also substituted dexamethasone for the prednisone, but I take exception with that and will try to open a dialog with the doc about that.

Anyway, we had a plan. And it worked! Eventually. I was still in a fair amount pain before the appointed 7 AM appointed hour to decide to call (if a lot of pain) or just proceed (if all better). I called. He upped the methadone All the ways that it gave me a beastly pain to move have dropped me from 8 (on the 0-10 pain scale) to 3. Remember, that 8 was only with trying certain movements. Most of the rest of the time was in the 2 to 3 range. Here's an article that is mostly not useful here except for the bit on pain management over halfway down that actually includes a picture of the chart that I find useful.

This last dose adjustment did the the trick. SO much better on the worst of the pain spots that they feel almost old-person normal.

All of the above weaves through from Friday late-afternoon to Saturday afternoon.

Saturday was my Keeper's last (and shorter) day of his Saturday morning's class, so we had a changing of the guard at 9 AM. Mom brought latte and breakfast (McD' sausage-biscuit with egg sandwich meal --which includes that yummy "hash brown"). Mom was present for the next hospice call-back to see how I was doing on the methadone. Saturday was also visit day from my longest- time in the whole world. She brought a lovely bouquet of roses from Costco. (In case you're unaware, Costco has excellent quality and quite cost-effective flowers.)

Over the course of the last few days -- on a pretty addled head -- I managed to redo the "templates" that the Case Manager had done to clean it up, make it more readable, make it more pertinent to our needs, and update it to the drugs I'm currently taking.

Today's plan includes My Keeper spending the afternoon with his babe unless she's suddenly chained to her parent's radiator or something arises at work. If he's with his babe, Mom will be here for the afternoon (even though she's probably not needed for that 3-hour absence).

But right now, I'm feelin pretty sleepy. But more importantly my butt is going past pain and into sharply painfully numb. I must get horizontal very soon.

My Keeper was off at class Saturday, so he arranged for the Alternate Keeper to come over. Beyond that, my Keeper also spent the afternoon with his Babe, so my Alternate Keeper stayed on... quite happily till the prescriptions arrived. Surprisingly they were all in pill format. I was rather expecting liquid format, but this is fine.

Sunday morning my Keeper stayed around on the late side doing laundry, picking up the Sunday paper, and dealing my car battery again. *sigh* He still went out to play with his Babe in the afternoon since she was available. Today he'll be further dealing with the battery, probably buying a new one.

See? Not much happening. There's not much on the (my) calendar this week.

For the last several days I've been alternating between 2 and 3 dilaudid per day. The 2-dilauded days tend to suck and the 3-dilaudid days go *much* better. So, we'll be doing 3-dilaudid days from here on.

Yesterday I had a visit from Mom and from my Trivia friend (who brought flowers)... then spent the rest of the afternoon napping. It's pretty easy to nap these days.

Today has come and gone, so a "Today's plan" doesn't seem right. So I'll just share that I had a lovely visit with TMH (who also brought flowers and and took away my expired or otherwise unusable drugs to dispose of at an approved station). Later in the afternoon the hospice nurse came by and met My Keeper. Since I'm running low on dilaudid, she's going to order up a refill to be delivered today or tomorrow.

And now I'm feeling like a nap.

The day before yesterday I tried going back to only 2 dilaudid. OMG! WAY more pain in the afternoon. Almost couldn't get to sleep at night. Woke up in serious pain this morning. We have made a decision to go to 3-dilaudid schedule every day. I just can't deal with that pain. 

However, it also means that I'm going to spend a lot of time being loopy, sliding into sleep while talking, reading, trying to pick a TV show... So, those who come for a visit, be aware that I'll be like your great-grandpa and dropping out of the conversation periodically. I mean, I'll *try* to keep it together, but I can't guarantee it. (Even writing the blog is frequently quite the mental challenge.)

Yesterday was mostly a quiet day. I had been expecting the hospice nurse, but she called to say she was ailing and wanted to reschedule for Thursday or Friday. I picked Friday. But we go back to Wednesday next week.

I was in such pain and such loopiness yesterday that I dimply don't remember anything else that happened. *sigh*

Today's plan started out with Mom coming early to bring me a latte, doing more yard work for the house-painting prep, and some advance cooking for me. And then my Trivia friend came for a visit (with flowers).

So far I'm having cotton mouth, some pain, and a lot of loopiness.

Actually, my day started out with, "It's 8 o'clock already?!?!?" I am completely losing touch with dates and times, mostly by sleeping through them because of the dilaudid. Which is kinda sad because, at the MOST, I'm only taking 1/3 the allowable dose.

So, what is that 1/4 to 1/3 allowable dose doing for me? The 1/3 dose is causing me to sleep hard all the way through the night, no pain once I get to sleep. The pain in my hips is diminished, but not gone during the day. That's Kinda OK. I'm frequently non compos mentis during the day. I start talking and stop in mid sentence. Sometimes I can pick it up later, but not always, especially if I'm with multiple people. And entire days seem to get by that way, too. 

Of course, I have My Keeper. He's making sure I'm eating. He's making sure that I'm taking my supplements and meds keeping tracking track of the meds on the spreadsheets that the hospice nurse provided. It's not that he's here 24/7 yet. He went off Monday for an appointment and errands and will be doing the same sort of thing.

One of the things I asked my keeper to do the other day was to take *my* car on his appointment and errands just to keep it running. Well, it didn't. Run. So, Mom brought over her battery charger and it all worked like a champ. He used my car for errands all yesterday afternoon. And discovered that my left headlight and running light are out. I need to work out an appointment for him to take it into the shop for that a several other things the I knew about that weren't critical.

Today's plan is that at *some* point today the hospice nurse will call and give me minimal notice of her drop-in visit.

Yesterday my step-sister & her husband brought more goodies to much for lunch. She brought less -- a LOT less -- because my brother wasn't going to be eating. And there were still left overs for Jeff for dinner. :-) And we had a lovely visit for a few hours.

The bonus of the visit is that the dilaudid didn't seem to make me as loopy yesterday. That would seem to mean that I could take it more often for the pain and not be as loopy. That also seems to mean that I'm becoming adapted (AKA, addicted).

I'm still sleeping quite well with just the two doses a day.

Today's plan includes a visit from Mom and another from my step-sister and her hubby before they head south. (Not Mom, just my step-sister.)

Yesterday my step-sister & her hubby brought a mess o' food for my brother (AKA Keeper :-), themselves, and me to gorge on. I ate so much (for me) that I couldn't finish a small small bowl of soup for dinner. (Of course, my brother took care of my lunch portions and a bunch of the leftovers for dinner.)

Yesterday is also the first day that I stayed up after taking dilauded. Talk about loopy! But at least I didn't have the whirlies. You know, like when you spin around till you fall down and nothing stops spinning? No, the dilauded just makes me a little goofy.

But I can certainly see how someone in pain could become addicted to the stuff. The first time the pain poked at me as the dilauded dilauded wore off, I was already thinking about another dose. That's usually NOT how I do these things. So, I have some thinking to do about how I want to manage pain while I'm dying. Should I keep my old philosophy and tough things out? Or should I just shoot for comfort? The problem with *this* comfort is that it tends to steal my brain or make me sleep.

Last night I took another dilauded at 8 (bedtime). My brother noticed that it was really trying to put me out. I usually set up the TV line up for the night at bedtime, but I kept dropping off with the remote laying on my chest. Then I'd wake up long enough to set another one, start looking for another, then drop off again.

I slept solid through the night till my brother woke around 6 AM (to start getting ready to go off to German School). At that point I started feeling the pain in my right hip. My current philosophy has me on a 12-hour schedule for dilauded (even though I can take it every 4-6 hours), so I decided to wait till 8. But I fell asleep and didn't take my next dose till 9.

Today's plan potentially to have my step-sister & her hubby in for some lunch made of leftovers from last night's dinner she fixed at the parentals. It's kind of a loose plan for now. If nothing else, I'll sleep on the sofa with all that dilauded on board.  :-)

The biggest news is that I've started taking Dilauded periodically. At this point, there's the one I took back in late April, one the night before last, one yesterday morning, one last night, and one this morning. The thing is that I don't *really* know if it's killing the pain because I'm mostly asleep and not moving, but I have the sense that it's working.

Dilauded is also known as Hydromorphone. Note the "morphone" in the name. That's a tip that it's a morphine derivative. The other opiate here (in the "Comfort Kit") is Oxycodone. Note the "codone" in the name. That's a tip that it's much like codeine.

I don't know whether the weekend visits contributed specifically to the build up of pain, but I'm sure that EVERYTHING is contributing to the build up. BTW- I have been taking it only twice a day. The prescription allows every 4 hours. That would be 6 pills a day, so I'm really not loading up on the pain meds yet.

So, what have I been up to?
Tuesday was Family Work Day. We actually made enough progress on the Guest Room that it now The Keeper's Room. My brother has started moving in so he can try to be able to live a semi-normal life from there. So, that's the other big news.

Wednesday the hospice nurse dropped in again. She specifically asked whether I'd taken the Oxycodone (no) and I offered that I took a dilauded after her last visit. And my brother started staying here Wednesday night.

Thursday morning I took a dilauded and don't remember a thing that happened after that... till my brother got back home. Guess I'm going to have to have someone come and wake me for lunch on days when I take loopy drugs in the morning, or just figure on large breakfast & dinner.

Today's plan includes my step-sister (yes, a third!) bringing a mess o' mostly pre-cooked food over (that she is spending the morning cooking) so we can have a festive party.