80. Losing Perspective
As of this moment in time, 4 AM on May 31st, my ‘live to’ goal is June 8th. That’s the day Shelf Media Group plans to publish their Summer Reads edition. That’s the issue with my interview and I’d sort of like to see it.
I think I’ve established that I feel most comfortable living life behind the scenes, so it was very unlike me to do the interview, let alone be excited about it. One of the reasons I agreed to chit-chat with writer Alise Mgrdichian is to tell a little bit about my having a lifelong dream of publishing a book and finally realizing it. I think it’s kind of cool that I pushed all-in — that I didn’t leave a really important thread hanging. The other reason for doing the interview is simple. I have experience with hospice, I am willing to talk about it, and I am still able to talk about it. At the risk of repeating myself, I sincerely believe that if not for Nurse M’s medical attention and overall support, I wouldn’t know what to do during this emotionally charged and physically difficult time. I know with certainty that I would be so far adrift, and in all honesty, I most likely wouldn't even be here.
Broken down.
I’m going to liken myself to a car for a minute. I’ve broken down by the side of the road in the dead of winter. A truck pulls up beside me, and what luck, the driver is a mechanic. He signals me to pop the hood, and after several minutes of poking and prodding this and that he emerges from under and says, “Sorry, but this car is all but dead. She’s not gonna take you any farther.”
“What do you mean she’s all but dead? She’s not that old. Maybe you could fix her at the shop.”
“Nope. This is the end of the road for her.”
“So, that’s it? The car can’t move?”
“Nope, but I can call a tow. It’ll be a while before it gets here.”
The tow truck driver pulls up and takes a look under the hood. I push for an answer, “Is she dead?”
“Not yet. We should get you somewhere safe, then I’ll come check on you from time to time.”
“Check on me? From time to time? What am I supposed to do, just sit here on the side of the road?”
“You’ll be okay. Trust me.”
I sneer then roll my eyes.
The driver tells me straight, “Your car will be dead soon, but there’s still some life left in her.”
“And?"
“And, I suggest you hang out and make the best of it.”
I sneer then roll my eyes.
“Look, your car can’t move, but the engine still runs. Just kick back, turn on the heat, listen to some tunes, and read the books you’ve got on the seat in back. Stay in the car and don’t do anything stupid.”
“Like what?”
“Anything. Just don’t do anything.”
“You’re sure there’s nothing you can do to fix her?”
“Sorry. There’s nothing anyone can do.”
Kinda sums it up — weird, huh?
In that scene, my hospice nurse is the tow truck driver, the one who offers help, realistic help. As hard as it was to hear, Nurse M told me straight up that I’d already lost my battle to cancer. Who else would say that? Who else would know a soon-to-be dead woman’s final days don’t have to be about dying? Who else would know answers to questions like, “Are long periods of nothingness normal when you’re on a narcotic?” Or, “How can you tell the difference between a dream and a hallucination?” Or, “Do you think I’m forgetting how to swallow because I might have cancer in my brain, or could it be because of the narcotic?”
I could find answers to those questions online, or I could call my doctor’s office and ask people who are focused on saving lives to switch lanes. But, let’s face it, they might have to find answers to my questions online.
No matter the topic, no matter the emotional push, no matter how unusual or uncomfortable the question, Nurse M leans all-in and works it through with me. She knows me. The person who I am now. The only other person who knows me at this base level is the She Devil. Why? It’s really very simple, they know the questions to ask, they let me say what I want, and they don’t try to fix what can’t be fixed. It’s a fine and delicate line they walk, but they do it with finesse.
And what about Mr. Wonderful?
Tim knows every single thing there is to know about me. He knows about all of this crap, too — eventually. Sometimes the person I am today gets twisted up in torment when I need to share something that will hurt him as much as it hurts me — so I don’t always go there with him. I try to protect him. I want to protect him. I can’t protect him from my death, but I can shield him from parts of my dying — or keep certain changes from him until I’ve had a chance to process them.
A couple of weeks ago, I started having what I refer to as, “Back-ass-hip pain.” First, you should note that that description feels like a medical one to me. Think about it — “The back is connected to the ass bone, the ass bone is connected to the hip bone,” see, Skeleton 101 in song. Nurse M understood exactly what I meant when I used that sophisticated term. She’s been dealing with me for months now and has learned how to decode my talky-talk.
Right out of the gate, words like lumbar, coccyx, sacrum, ilium, started trippin from her mouth. I sat there nodding as though I knew what she was saying — I knew shit — other than my back-ass-hip hurt.
Oh, and I knew this, too.
Someone who sits on her back-ass-hip 24/7 cannot afford any pain in that area!
So, what was the plan Nurse M put in place? As soon as humanly possible, I would be going back on the super-de-duper narcotic that I’ve been on again, and off again because I needed Paxlovid for Covid and the antiviral does not play nice with narcotics. So, off I came. As of yesterday, I’m riding the wave of a very potent drug, and am feeling a little less pain in that part of my body.
So, who is losing perspective and is it a problem?
My OB family is losing perspective in different ways and to different degrees. It’s not a problem, per se, but I do have some concerns. First, I’ll focus on me because I influence the rest of my family. I get that the goal for me is to not feel any pain. That is a lovely goal and I am fully onboard with it — but — when I have breakthrough pain in new areas, like I did on my right shin and in both of my shoulders a while back; and when I have a bout of big-ass-pain in my back-ass-hip that I’ve never had before, I am reminded that Chewy Louie is enjoying himself at my expense. I am reminded to pay attention to all of my movements even though they are nothing more than a slow shuffle behind my walker and a lengthy sit on my ass. When I feel the pain, I slow the shuffle and sit more gingerly. “So, I think some pain is good?” I suggested to Nurse M.
“No. You should be pain free. You’ll live a better life if your pain is gone. You’ve known for a long time that you’ll break something if you do anything. The presence of pain isn’t going to remind you to be more careful or change the way you’re living. So, we need to get rid of all of your pain.”
When the newest pain hit me and because of where it hit me, it wasn’t hard to figure it was the byproduct of my 24/7 sitting. I immediately redistributed my weight onto my other hip. I think I heard that hip say, “Oh, no, no, no, you don’t. Get the eff off me.” I should have listened because I now have pain on both sides, though more intensely on the left.
So, what’s a girl to do?
Hope the narcotic numbs the pain, and make sure I move as little as possible — that mostly means repositioning myself on the recliner which is just about the only moving I do. I keep my hopper visits to a minimum, and try to not think about what will happen should I fracture my back-ass-hip. I am having very little success with that one! So when Sheila Lavallee Westerlind offered to say a special prayer for me, I asked if she felt comfortable zoning in on my back-ass-hip. She messaged me a thumbs up and said she’d get right on it. Pretty cool!
The other thing I need to do is start reminding my family members that I am dying. You probably think that that’s all we think and talk about, that that’s the focus of our lives. You couldn’t be more wrong. It’s understandable that you’d draw that conclusion because you read my blogs. For a few minutes, a couple times a week you push into my world. You probably think that since death and dying is my world, and since Tim and the girls live with me, then death and dying is their world. Nope. If you pull a few threads, you’ll see that I’m usually writing in the middle of the night, that I’m examining and emoting in the middle of the night, that the thoughts and feelings that find their way into the blog are mine — the ones I’m dealing with during the middle of the night — when I am alone.
A look into my family’s world would surprise you — if you expect to see sorrowful expressions.
The extended period of time between hearing the awful news to now has lulled everyone into a sense of suspended realization and/or expectation. I’m not even sure if that’s a thing, but the people who live at 181 and 183 are conducting their lives the way they did before they knew my fate. They know I’m sick. It’d be hard not to be reminded what with the recliner permanently attached to my back-ass-hip, and the handful of pills I swallow six times a day, but I don’t look ill and for the most part, I don’t need tending to. Sure I need babysitting and the nightly escort to the BR, but I’m still able to do stuff for myself. As such, life continues the way it always has at the OBs. Conversations about future events, the ones I won’t be here for, take place. There isn’t any awkwardness or sense of heavy burden being carried because everyone has buried or shelved thoughts of my eventual reality for the time being.
On the one hand, that is fantabulous.
On the other hand, it causes me concern.
In blog 8, A Cry in the Night, I wrote:
Now that I know I have terminal cancer, the pains I am feeling are in my head and in my heart. From sunup to sundown I am thinking about what this disease is doing to me and to my loved ones. My grown daughters are easily brought to tears when they give me a kiss and head out the door or when they see me after a long day away… My girls do not want to lose their mother, the woman who is always at the ready with advice (solicited or not), and who is at the ready with the healing hug that can only be found in a mom’s embrace — their mom’s embrace… We discussed the options of Ibrance and bone strengthening pills, and radiation treatments and blood work requirements, then I reminded Hannah and Jessica, “I am not going to wage a fight I won’t win. I am not going to torture myself or drag Hadley through a shit fest. I am going to enjoy the time that I have.” Our daughters nodded their agreement through tear-filled eyes and went separate ways to deal with the newest reality.
I’m sure they have their moments in quiet times, and they share their pain with friends, but I also know they think of me as ‘super mom’ — the one who had her skull opened and closed twice, the one who made it almost all the way back to who she was pre-brain surgery, the one who survived breast cancer, the one who’s done whatever was needed to be done. The one they might mistakenly consider indestructible — because they want and need her to be.
My OBs have pulled it together from the first days of terror. We all had to. Life needed to go on as close to normal as possible. We have a seven-year-old to consider. Beyond that, we’ve been blessed with way more time than we ever could have wished for. Bottomline, it would be impossible to dwell for long periods of time in the dark places that pull us. I get that, but taking a look into the abyss from time to time isn’t a bad idea. In fact, I think it would be helpful.
As we inch toward June 8th, we’ll pass the She Devil’s birthday (not saying which one because she kind of scares me), and just beyond that is Tim’s and my 36th anniversary, and just beyond that is Hadley’s eighth birthday — so guess what my new ‘live to’ goal is?
That’s an easy-peasy one folks!
I told you in a previous blog that my special birthday gift to my girl is a beautiful treasure chest/jewelry box filled with birthday cards, one for each year until she turns thirty. I absolutely love the idea that I might be here to give her the box, and show her the key I taped to the bottom, and maybe discuss where she might put the box. Will she put it high on a closet shelf or tuck it into a drawer so it’s not a daily reminder, or will she keep it on her special shelf, the one loaded with special things from MammyGrams? No matter where she keeps it, I’ll know that once a year she’ll turn the antique brass lock with the antique brass key and find my birthday wishes tucked inside.
That is the best gift I’ve ever received — and I gave it to myself!
I need to do a little housekeeping.
I write my blogs without any involvement from anyone. It is a rarity for me to ask for background info or facts and figures. I want this writing experience to be mine. I mentioned this when I could have asked my mother questions about Meme and Tom Duquette, or the grampy who called her Tiddlywinks, or the Impossible Dream, but I want to write from my memory, even if I end up getting a few things wrong. It’s important that I search my brain for information, then organize it and write about it.
I’ve decided that when I miss the mark, I’ll let you know. Well, I have some cleaning up to do on blog 78, Painful Weekend — Part Two. I wrote:
We spent a lot of time talking about childhood vacations and then listed the places we’ve been to as adults. We were a bit surprised at how few places Tim got to tick off his list. He went to Montreal and Quebec, by choice, while on a high school trip; I went to Nova Scotia, Prince Edward Island, and New Brunswick as a kidnapped offspring. We’ve both been to New England states: Maine, New Hampshire, Vermont, Connecticut, Rhode Island, and to New England adjacent states: New York and New Jersey. Tim traveled the furthest from Massachusetts given that he lived in Texas for five years. He visited some major cities while in The Lone Star State, but once he settled in The Woodlands, he stayed there.
Apparently, I left quite a bit off his list.
Paging Nurse M. Please report to 183 for a memory consult!
Indiana, Illinois, Pennsylvania, North Carolina, Oklahoma, California, Florida, Washington, Oregon, and Barbados. These were business trips of Tim’s.
I’m guessing I forgot about them because I was left at home with two little kids whilst he was ‘working’!
One last thing.
In my most recent blog, I wrote:
Whilst pampering for my Memorial Day cook-in, I joked about braiding or curling the hair on my legs. For some reason, I became obsessed with my leg hair. I decided I really needed to shave it — like right then! The dude I’m married to suggested I just ignore it. I tried to explain that having v.e.r.y. l.o.n.g. leg hair wasn’t only a vanity issue, but it is also a comfort issue because long hair causes itching and prickly pain.
He rolled his eyes. I hate it when he rolls his eyes.
He hated what happened next.
“How about I mow the hair off of my legs. After all, you won’t be using the mower on your lawn.”
Yeup, I hit him below the belt.
He extended his hand. “Give me the razor!”
Many of you, far too many of you thought he was being helpful — that he had good intentions — and that he shaved my legs. For the record, his words were laced with menace.
“Give me the razor!” could have been followed by, “I dare you. I double dare you!”