91. For Your Information
I sort of had The Conversation with Nurse M. You know, the conversation where we accept where I am and drill down into what things will look like as I move toward my deathbed. This conversation had NO element of chitchat. It was intense. You should know from the get-go that I am dividing my current state into two parts because I find it easier to understand and because it puts emphasis on the ‘signs’ that need to be read.
I don’t think I’ve mentioned in any of my blogs that once you join hospice, standard medical care protocol is this: no scans or tests or anything else is done to check on things (unless an infection or some other treatable situation is suspected. Remember, I am not an authority on hospice, just a patient, so season my words with a grain of salt). Minus scans and stuff, no one really knows what’s going on inside of me. No one really knows what my skeleton looks like at this stage of my disease. I’m sure it looks like shit based on the work Chewy Louie has done over time. I’m sure the black markings of cancer have spread far and wide.
Warning! Important Signs Ahead!
Nurse M has been reading my signs since Day One. She is a professional hospice nurse so she knows what she’s looking for. I have dabbled a bit at sign-reading, but I am an amateur. Still, when I noticed things changing, I put 1 + 1 together and came up with 2. And when evidence suggested I turned a corner, I shared the changes with you. The changes and corners were based solely on how crappy I felt, there was no clinical information being used. Truth be told, my assessments and explanations could have come from a fortune teller reading a crystal ball or a bunch of tea leaves because like I said, I’m an amateur.
But hang on.
I’m going to go all clinical on you.
Part A, are my vitals and they are status quo. Basically that means my heart rate, blood pressure, oxygen level, and lung and abdomen sounds are all in the Stable Mabel range. Thumbs up for me! Part B, are the other things, the bits and pieces that when put together tell a medical story. To my chagrin, the signs are sort of like jigsaw puzzle pieces, and we all know how much I love a good old jigsaw. Did I say love? I meant to say hate. Did I say hate? I meant to say loathe. I loathe jigsaw puzzles; all those pesky pieces that need to be snapped together with the sole purpose of getting to see the image that’s already printed on a box. I don’t get it, but whatevs. At the end of the day, it doesn’t matter what I like and don't like. Why? Because my death puzzle is printed on a box somewhere and most of the pieces to my dying process are in play now.
So what’s a dying girl to do?
Look at this part of my shit fest
as though it’s one of ‘those’ puzzles.
I’ve mentioned before that Nurse M runs a list of questions at each visit. To the untrained individual they are a bunch of nonsensical things, still, on some level we all knew they meant something important. When BP cuffs and stethoscopes are being used in a clinical way during a visit, questions about appetite and bathroom strolls aren’t measured on the same level of importance — but it’s those questions that will trip you up one day.
For me, the trip took about eight months.
My jigsaw puzzle.
From Day One, Nurse M has been using my answers to that effing list of questions to build the framework for my very own end of life jigsaw puzzle. After each visit, she has snapped another piece or two into place. Snap. Snap. Snap. Snap. What that means is this: my death picture is coming into focus. When the final piece is snapped into place, YOU will know the answer to the question that has loomed since November 1st — how I died. More to the point, you’ll know when I died.
I’ll know part of the answer — maybe.
This is normally when I’d go off on a tangent about my being the only damned person who is entitled to know how and when I died, but this isn’t a normal blog; this is ‘some serious shit’ as my brother Don would say.
For the purposes of this blog, I’m removing a catastrophic event from my death options. Broken bones, a collapsing spine, a heart attack, and a stroke are possibilities, but I don’t want to think my death will be that traumatic. If I’m wrong, this is the course of things for you. One day you’ll pull up a blog and see it was written by Nancy Pendleton. I can’t say what she’ll be telling you, but it won’t be good news and you most likely won’t hear from me again, but Nancy will be writing a blog or two explaining things.
What is more likely to happen, based on the jigsaw assembly that's been going on since Day One is this: first, a little refresher course. I learned about the cancer, did some unnecessary crap, and decided to enter hospice; the medical assistance program that believes pain shouldn’t be part of the dying process, so pain management is taken very seriously.
The initial pain assessment way back when determined what medication I’d be using: Tramadol, and the dosage prescribed: one tablet every six hours. As days turned to weeks and weeks turned to months, it became a merry-go-round of: effective pain management — breakthrough pain — increased dosage; effective pain management — breakthrough pain — increased dosage. When I got off the merry-go-round, I was at two tablets of Tramadol every four hours.
And when that became ineffective —
A powerful narcotic with a Tramadol chaser became my pain management plan. The combo has been effective, but the drugs and/or the advanced stage of cancer, has caused fatigue. I use that word because I can’t really find one that adequately explains what happens. Maybe if I tell you, you can come up with the correct word. This is what happens: fatigue doesn’t present as a few yawns here and there suggesting a snooze may be in order — there is a sudden announcement that ‘you’re going to sleep NOW’ which is followed by an instantaneous body shut down. Absolutely no bullshit here. I could be typing a sentence or speaking one, and I will be taken over by sleep. The length of my ‘nap’ varies; one to four hours is typical. The number of ‘naps’ varies; one to four per day is typical. The result: a major disruption to my life and the things that make my life worth living; visiting with family and friends, and writing my blog. The frequent naps are why I am down to two blogs per week, and that’s why I don’t have time for the minutiae of life. Just sayin.
So where are we?
The increased pain, in conjunction with the Big Boy narcotic, in conjunction with the PCA to scrub-a-dub-dub my bits and bobs, and the ‘No Small Talk’ phase, let me know I’d turned a big ass corner which pushed me toward The Conversation with Nurse M. I am presenting our back and forth as close to verbatim as possible.
“So, tell me what happens between now and the day I crawl onto my deathbed.”
“You will continue to decline physically. Everything will become more difficult for you. Your pain will continue to increase. As you know, bone cancer is very painful, so pain management will be the plot (my word) of your end of life story. As your pain increases your narcotics will increase. You will spend more and more of each day sleeping, which will decrease the amount of food you’ll be taking in, which will increase weakness and decrease movement. Once you are no longer able to make bathroom trips, you will be asked to move to a bed.”
“Based on where I am right now, do you still think I’ll get the summer?”
“Yes.”
“And once I get into the bed, how long?”
“Your pain will dictate how things are handled which will ultimately determine the length of time. Our job is to keep you as pain free as possible. What that means for you and your family is that you will be sleeping most of the time. We tell patients to use two weeks as the timeframe for in bed care.”
“How will I know we’re moving toward the bed?”
“My visits with you will increase.”
“So when you go to three visits per week, the count is on.”
“Yes. My visits will go to three days, then four days, then five days. That’s when we’ll start making plans for medical equipment and around the clock professional assistance.”
So there you have it.
M-F is the curse of the living and the dying.
BTW
When I go to three visits per week, I will tell you.
On second thought.
I did some math (that is sooooo not a good idea, but desperate times deserve desperate measures). There are approximately eight weeks between now and Labor Day — the unofficial end of summer. I have not yet gone to three visits per week, so there’s that.
On today’s visit with Nurse M, I drilled down on a few alternate scenarios. Obviously what was already presented is the possible worst case. The rapidity of it is based on the undeniable fact that death-stage bone cancer is very painful. Keeping me pain free will be the focus of my hospice team. Medications like morphine have to be used to push back hard against the pain. The push and pull might make for a quick passing.
But there are other possibilities.
Let’s say I become bed bound because I can no longer ambulate to the bathroom. Not being able to pee and poop on my own doesn’t mean I will die in two weeks, it means that I will live in a bed rather than on a recliner. If my pain doesn’t increase rapidly and I don’t require the use of morphine, then I’m not on a fast track to death. As Nurse M clarified today: there are many things that determines when a passing takes place. Sadly, a bone cancer death is all about pain management and that will dictate my passing.
So I guess I’m back to where I was when this shit fest began. I thought I’d be told to hop onto a deathbed one day — and I’d get hopped up on morphine — and that would signal the end of my life.