87. When You’re Right, You’re Right
A rather bad, rather odd weekend began last Thursday when Nurse M and I finished an ordinary visit and I proclaimed, “Stable Mabel,” and she agreed. I knew there’d been a slight downward trend in my blood pressure of late, but she said she wasn’t concerned because it was the only vital slightly off, so I chose not to be concerned about it.
And. Then. This. Happened.
She started packing her things and casually said, “Nothing to be concerned about, but there are some things we should discuss. Nothing urgent. Maybe on Monday. So don’t worry.”
My head began bobbing like the dashboard Weiner we’ve discussed previously, but this time I had full control of the up and down movement, though one would never know because the nodding did not match up with the thoughts already beginning their nudge.
Personal admission: An accurate description of me is that I’m like a dog with a bone. If you are unfamiliar with the term, you won’t be for long.
Full disclosure: A couple months ago, a very strong narcotic was added to my pharmaceuticals. I’ve mentioned it in passing a time or two. The first time I tried out the handy-dandy medicine patch, it lasted two days. I needed to stop it because I got Covid. The pain med and the antiviral med I was put on don’t play nicely together, so one had to go. I opted to chance having a little pain in order to outlive the plague, so the patch came off. Not to worry, I still had my trusty Tramadol. The second time I tried the patch it lasted one day because of a coma-esque side effect. It was determined I still had too much Paxlovid hanging out in my system, so off came the patch until it was deemed I was Paxlovid-free. The third time we tried it, the patch worked like a charm. You should note that the med is powerful enough to knock me out cold — literally — while in the middle of a sentence; a speaking one or a writing one, it doesn’t matter. Inconvenient yes, but a small trade off for its efficacy. An additional benefit of the pain medication: slap it on and get on with your day.
It’s rather obvious why the muscular med was added to my daily dosing — my pain was no longer being managed fully by Tramadol. No worries! The patch kept me PAIN FREE. Prior to that addition, I had intermittent pain from Chewy Louie, you know, the breakthrough crap that felt like a rodent took a big-ass chomp of a bone then topped it off with a bit of nibbling here and there — that is the most frequent type of pain I’ve had throughout this period of time. I also had residual discomfort from that time when it felt as though someone took a bat to my back and short circuited me for a bit. And I’m assuming the elastic band snapping, bobbleheading event probably included pain, I figure I just didn’t feel it. I’m perfectly okay with that by the way. And let’s not forget the occasional back-spine cracking thing which is nothing more than the sensation of cracking your knuckles, so physically not so bad, but emotionally it’s significant.
All of that crap happened here and there and everywhere while on Tramadol. Concerning yes; painful yes; manageable yes.
Most everything was manageable, except for the crap at L-1, that is a whole other story. Pretty much, I’ve had consistent pain and aches and discomfort in that area of late, and when L-1 pain intensified, it was always a topic of conversation from a pain management standpoint, but also because it signaled there was an obvious spine weakening going on.
Without question folks, my spine is becoming problematic.
A little recap might help.
When this shit fest began, I was pretty much benched from life. My time, the time I could spend upright and on my feet was limited, but it was ‘my time’ — what I did with that time was limited to personal care. Back then, I was in the mindset of: when life whips lemons at you, you try to catch a few and maybe add them to your skin care regimen. Way back then, I spent my time washing my hair in the kitchen sink and blow drying it in the bathroom. Then I’d move on to: facial care, a full body sponge bath, brush my teeth, and dress myself. I remember how sad it made me to accept that routine as the be all and end all of my ambulatory life. And when I did all that stuff start to finish, I got to claim it as having a successful day.
Have to tell you, I just wiped a little tear away.
Little by little things changed physically which meant the measure of my ‘success’ was modified to this: wash my hair - sit down; dry my hair - sit down; facial care - sit down; wash my upper half - sit down; wash my bottom half - sit down; brush my teeth - sit down; get dressed while sitting down. Not bad, but somewhat emotionally defeating. Until …
I needed to wash and blowdry my hair the night before a hospice visit, and the morning of the visit I needed to sit in my recliner for the facial care and upper body washing, then move to the bathroom for the lower half. Accomplishments not worthy of celebration perhaps, but accomplishments just the same.
Problem. My newest routine requires a whole lot of getting up and sitting down.
Who wants to know?
I’m sure you remember the list of questions Nurse M asks every visit; you might not know all of them, but you know there’s lots of them. Several of them are about personal care; whether I can still do it and how do I feel after doing it? My answers have gone from: “Yes I can do it, and I feel fine afterwards,” to “I can do some of it, take a rest between, then do the rest; but I am wiped out afterwards.”
Getting back to this blog.
For the remainder of Thursday and all day Friday, this crap looped through my head: “Nothing to be concerned about, but there are some things we should discuss. Nothing urgent. Maybe on Monday. So don’t worry.”
HA! FAT CHANCE!
Maybe there’s nothing to be concerned about —
but I be concerned about it!!!!!
It has to be about personal care. Right?
I tortured myself about ‘The Talk’. I tried to put it out of my head — no I didn’t. I pushed all-in and pulled apart every bit of the very brief comment Nurse M made; then for shits and giggles, I added everything I could remember from all of our recent visits and pulled that shit apart. The only new thing added to the mix was measuring my upper arm.
Here we are: dog with a bone: I did the torture routine by myself for hours on Thursday, and Friday, and whenever an unsuspecting victim wandered past my recliner I dragged them into the fray: Tim, Hannah, Jessica. Repeat. Repeat. Repeat. When they got wise to the repetitive onslaught, they found a different route to the kitchen leaving me with no face-to-face victims. So what’s a girl to do? Push 666 on speed dial and ask the She Devil to play a new game: The Talk - Speculation Edition. In retrospect, those calls might have been a bit too frequent — BTW, has anyone seen or heard from the She Devil? I think she’s having trouble with her phone ‘cause my calls keep going straight to voicemail, or maybe she’s out of range, or maybe she left for places unknown on a secret getaway — yeup, I’m going with that! And I'm sooooo going to ponder where members of the Devil species go on vacation — not somewhere warm I’m guessing. I smell a new blog coming on!
I digress, but that’s part of my charm.
So, this is where we were before I did the whole disclosure thing: Nurse M casually mentioned an upcoming conversation we should have. That began the: Nudge. Nudge. Nudge. Speculate. Speculate. Speculate. Pester. Bother. Badger. By Saturday, these thoughts were on a constant loop in my battered brain: Is the blood pressure dip an issue? Am I falling into the coma-esque sleep of the dead because of the powerful meds or because my cancer has me where it wants me and is ready to kick my ass into a deathbed? Or is it that I am too far gone to be able to care for myself?
In several blogs I admitted that the washing and drying of my girly bits by a stranger was an issue for me. Come to find out, it’s a big issue for most people, at least the people I broached the subject with. Most came straight out and said so, others shivered and squinched their faces up and groaned loudly. So as far as this subject is concerned, I feel I’m in very good company.
The thought of being stripped of clothing and washed from top to bottom like a helpless infant, is: humiliating, dignity-stripping, embarrassing, depressing, and, and, and. While pondering the added physical and emotional toll already being schlepped by a dying person, I wondered why some obscenely wealthy jackass doesn’t forgo a minute’s ride in a spaceship and do something for the greater good — like maybe invent some sort of portable shower for hospice patients. Imagine how wonderful it would be for me to perch upon a shower seat in a portable unit for a quick lather and rinse. It’s too late for such wonders for me, but it’s not too late for the rest of you. Anyway, given the state of my weakening spinal column, and the increased struggle to handle my own personal care, my pondering took me where I didn’t want to go and it kept me there all weekend.
Flashback: “I need to wash and blowdry my hair the night before a hospice visit, and the morning of the visit I need to sit in my recliner for the facial care and upper body washing, then move to the bathroom for the lower half.”
That has been my recent reply to her questions about personal care. That’s what I said on Thursday right before ...
She started packing her things and casually said, “Nothing to be concerned about, but there are some things we should discuss. Nothing urgent. Maybe on Monday. So don’t worry.”
My revelation: The Talk is gonna be about getting a personal care attendant.
Lightbulb moment! I called a family meeting and proclaimed: “Nurse Ratched is gonna recommend I get a personal care attendant. That’s what she wants to talk about on Monday.”
“You think?” was panted in unison by the winded, and physically spent loved ones who’d been avoiding me like I was Covid. Hannah added this commentary, “How the fuck did Nurse M get out of this house and off of the driveway without you saying, ‘Ohhh, nooo you don’t! You don’t get to drop that bomb and leave!’ You never would have let any of us get away with that.”
My answer was quick and concise. “I thought about it before she got to her behemoth, but what was I supposed to do, chase her?”
The angst about needing a personal care attendant settled into all of my vulnerable places by Saturday night, as did an uncomfortable amount of physical pain that intensified throughout the day. Despite my aches and pains, Tim and I spent Saturday wrapping Hadley’s birthday gifts for her upcoming party. He did the paper part, I did the ribbons and bows. They are beautiful by the way, but by the end of the day, I could barely lift my arms. He made me take breaks every so often, and suggested I take, ‘as needed’ doses of Tramadol, and at one point he asked, “What’s up with the pain?” and asked if something else was bothering me.
“I don’t know. It feels like there’s something I’m forgetting.”
“Something for Hadley?”
“Don’t know — ergo the forgetting part.”
Oh, and I should mention I got really bitchy.
By nightfall, the pain was everywhere — my body was letting me know it was pissed at me and subsequently I was pissed at anyone who crossed paths with me. Being in pain is exhausting and it chips away at a person’s civility — this person’s civility. I sort of pulled into myself. I tried to do some writing, failed miserably, hopped on and off of FB way too many times, tuned into Hallmark so I could zone out of life, then chucked it all by offering this mantra to anyone still within listening range, “For fucks sake, it looks like I need the dosage of this new med adjusted already.” I mentioned that once or twice, that night. Seventeen times!
Sunday started bright and early with Hannah and Jessica joining Mr. Wonderful and Mrs. SoNotWonderful for coffee and the opening of Daddy Day gifts. Hannah gave Tim a certificate to a new vegan restaurant and the request that they ‘go out’ and spend time together. I think she meant ‘go out’ right then. Jessica gave her dad a book she found particularly insightful. The title escapes me, but it’s a self-help book that explores the deeper meaning of life. I think she was pondering the meaning just about then.
If she’d asked, I could have told her there is no meaning to life.
It sucks you in then kicks you to the curb.
Like I said — BAD WEEKEND! And then came THE QUESTION: Why the bitchiness? Because I was in Excruciating Pain! For the first time throughout this shit fest, the oncologist’s words delivered a direct blow. Apparently, dying of bone cancer really is excruciatingly painful. Who’da thunk it? During the eight or so months that I’ve waged war from the confines of a buff-colored, warm and cozy recliner, I tolerated some intense shit, here and there. The pain I experienced Saturday and Sunday was excruciating and by the end of the weekend, it was relentless.
If I had the opportunity to address the oncologist, I’d say:
“When you’re right, you’re right!”
Excruciatingly painful death.
And then I’d say a whole bunch of other stuff.
When Mom and Marchrie came for their Sunday visit, and to celebrate Father’s Day, and to celebrate our Anniversary a day early, they should have been greeted nicely. This was their welcome, delivered by Yours Truly — but I suspect you would have figured that out by yourself.
“Come in. Don’t touch me. Say Happy Father’s Day.
Say Happy Anniversary. Eat your food. Then get out.”
There was a swear thrown in. I’ll let you decide which one and you can put it wherever you want.
Such Fun!
Despite my greeting, I managed to tuck my pain away, and had a lovely day. Having my mommy and sister with me actually helped me deal with the emotional and physical fallout I silently endured — which basically means that I stuffed my feelings and sucked it up. When they left, I crashed full-body into a coma. I woke early evening with this shouted proclamation, “WE FORGOT MY NARCOTIC! WE DIDN’T CHANGE THE PATCH!
Yeup. I’d gone over thirty-six hours without pain medication.
WHAT? THE? EVER-LOVING FUCK?
First, I’m going to offer our defense. Aside from Tim choosing to let me sleep through a dose of Tramadol very early in this shit fest, we have gone nearly eight months without making a single error. My pills have been on time and we have accommodated the addition of pills and the upping of dosages without so much as a blip on the screen. Second, those ‘pills’ are actual pills. They are counted out every Sunday by Mr. Wonderful and put into handy-dandy daily dispensers. The new narcotic is in patch form and it is changed every 72 hours, and because of its potency it is hidden far, far, away from Hadley.
Out of sight — out of mind. Apparently so.
Now for the fallout from the screwup. I suffered unimaginable pain all weekend. In complete honesty, none of the OBs asked the question, “Did we forget to change the patch?”
And now we ask: How is that possible?
Here’s an explanation. All but two applications have been handled by Nurse M during one of her regularly scheduled visits. I am the one who’s been keeping track of the application schedule. I have it in my phone’s calendar and set as an alarm on my cell. The reminders went off, but the phone was on silent and I missed them. I fucked up. Then, I think I was in so much emotional and physical pain, I just didn’t connect dot A with dot B. I just didn’t connect the dots.
Considering the pain began Saturday afternoon and then ratcheted up incrementally, the penny should have dropped, but I was focusing on other things: The Talk, and a birthday party, and an anniversary, and hanging with Tim who just began his ‘staycation’ and I’ve had painful bouts before, and I was living through the pain, just as I had before.
But
By the end of the weekend, I was left with this realization: I am a mess, everywhere. I would assess my lumbar area as very far gone. My legs, arms, shoulders, ribs, hips, pelvis and ass hurt, really hurt. EVERYWHERE HURTS! And I am experiencing something I’ve decided to call gut-rot because there is no other way to describe it. My innards feel like they have rotted away.
All of that physical pain messed with me emotionally. Once the tears began, I could not stop them.
Bottomline: the event reminded me of this, I have been living the life of a dying woman without having to feel the full range and depth of pain of a dying woman. It is safe to say that if not for pain management, I wouldn’t be alive, and quite frankly, I’m not sure I’d want to be.
God, please disregard that last statement.
It was said about a time of weakness.
It’s Wednesday and I am back on track and feeling virtually no pain. It’s Wednesday and I will be changing my patch this afternoon. I’ll be reminded to do so by five alarms — one on my phone, one on Tim's phone, one on Hannah’s phone, one on Jessie’s phone, and one on the alarm clock Tim relocated from our bedroom to the living room.
If you’re wondering why we didn’t call hospice throughout the weekend, there are several explanations: when things got bad on Saturday night, I began adding Tramadol back into the pain regimen, not knowing there was no current pain regimen. I can take 12 Tramadol each day, but I haven’t had to since I went onto the patch. Those 12 pills are taken on an ‘as needed’ basis; they’re basically add ons for when pain breaks through. Unbeknownst to me, I had no big-ass narcotic in my system, and by the time I began taking Tramadol I was too far down the rabbit hole. The Tramadol couldn’t catch up to and overpower the pain.
AND
Sunday was a day of celebrating different things, to me it was a day of celebrating an anniversary I didn’t think I’d live to see, so I pushed back at the painful push coming against me. My family enjoyed Father’s Day and our Anniversary first, then we planned on reaching out for help. Contacting hospice was the plan for when Mom and Marchrie left and I woke from my nap. Who knows, maybe the suggestion of calling them banged around in my head because when I woke I finally remembered what’d been bugging me all weekend — I forgot to change the patch!
The instant that sucker made contact with my upper arm, I felt better. I even felt well enough to listen to Don drone on and on and on about the drought in Georgia and how it might not be a bad idea to water the base of each tree. Then we got onto the topic of vacationing at Wells. It was the second time that day that Wells came up, so I ended the call early. Just as well because within minutes I fell into a full-body coma!
Happy Last Anniversary
I bought Tim’s gift in January because who thought I’d be here to give it to him myself. I had Jessica wrap it and keep it in her room so she could give my gift to him on June 20th. What joy I had thinking of him getting something he mentioned to me last fall.
“You know what I want for the garden?”
“Nope.”
“A sundial. I’d love to add one to the front garden. A really nice bronze sundial.”
Guess what Sheryll gave Tim as his gift?
You’ll remember I gave my jewelry to my ‘women’ during our Christmas celebration. The only thing I didn’t give away was a thin wedding band I’d worn for many years. I didn’t want to give it to anyone, in fact, I planned to have it come with me to the afterlife. Unfortunately, my hands and fingers have swollen way beyond the comfort of wearing that ring. On occasion I’ve lamented about not having a wedding ring to signify our commitment and all the things that we’ve been through and are going through.
Guess what Tim gave Sheryll as her gift?