42. Mr. and Mrs. Not-So-Wonderful
Tim and I ran into a rough patch recently. It followed a really bad weekend I had. Saturday started early (before 4 AM) when I was woken by nausea. I popped a pill, munched a few square salt crackers, put on the Hallmark channel for a distraction, and hoped I’d fall back to sleep. I put an abrupt end to that unsuccessful attempt at 5 AM, took my handful of morning pills, one of which was a Tramadol, and got on with things. I pulled my laptop onto my laptop and tried to blog something.
Tim got up late that morning because ……. I can’t remember, but we got to coffee late, maybe 6:30. By then, the nausea pill had kicked in just enough for me to enjoy my time with Mr. Chase, Mr. Sanborn, and Mr. Wonderful. When I lifted my big-ass mug I noticed some pain in my shoulder area — “Hmm, that’s new.”
“What?”
“Pain in my shoulder.” I moved the other one, “Hmm, pain in that one, too. That’s concerning.”
“Because the Tramadol isn’t working?” he posed the reasonable question.
“No. Well, yes. But it’s concerning because I have pain in places that’ve been pain free. My arms and fingers were the only bones from my skull to my knees that were cancer free. Shit. I want to keep writing and I won’t be able to if—”
“Let’s not get ahead of ourselves.”
“Right — and since I’ve had really good luck lately, there’s probably nothing to worry about,” I growled — at 6:30 AM.”
Four hours later, I popped another Tramadol because I was having breakthrough pain here and there and there, too. “Hmm, I’m having pain in my right outer shin area. I’ve never had pain there before.”
“And still in your shoulders?”
“Yeah, and in my left foot near the toes, I think.”
“I don’t like that you’re having breakthrough pain.”
“I wonder how long I’ve been in pain in those areas — and how much degeneration is going on? Hmm I never thought about this before.”
“What?”
“I’ve been happily thinking Tramadol was masking the crap that I knew about, you know, the cancer in my femurs and spine and ribs and shit, BUT the Tramadol is probably masking pain in new areas that are now being eaten away by that effing cancer mouse. I’m probably decaying all over the place, like my arms and fingers.” I started to cry.
Throughout the afternoon Tim hovered, and asked, “Do you want anything? Can I get you anything? You haven’t eaten all day. How about some toast and—” He held back the T word — smart man.
By late afternoon I was growling, “No thanks, I’m good,” to all of his offers, and inside my head I was screaming, “I want you to go away. Can you get the eff away?”
His need to care and comfort was interfering with my need to worry and weep.
My nausea hadn’t let up ALL DAY, so by suppertime I hadn’t eaten anything. And my pain hadn’t let up ALL DAY, so by suppertime Tim had hovered overhead a hundred times and asked his questions.
And then he suggested we call hospice.
I said. “Nope. Not yet.” Inside I was thinking, “Not if I were dying.” Yeah, yeah, I know I’m dying. And yeah, yeah, I know morphine can help with pain. But I also know morphine is a gateway drug — and the gateway I’m preparing for is Saint Pete’s gate (hopefully). So, at the risk of arriving at Tom Petty’s gates of hell, I stood my ground and I didn’t back down.
“But you haven’t eaten and you’re in pain.”
“I’m aware.”
“I should call hospice.”
“I don’t want you to, and you’d better not call behind my back.”
“Why don’t you just take a little morphine?”
“I’m not ready to go there.”
“But—”
“I want to take a nap.”
He put my phone on silent, shut the front door (which is our signal to the world-at-large that I’m resting), and he went upstairs.
I knew I wasn’t going to be able to sleep — I just wanted him to go away.
He came down around 7 PM, I think. He could tell instantly that I hadn’t slept and that I was in a lot of pain — everywhere.
“Okay. We need to call hospice. You need some morphine.”
I knew he was right, but in my head, taking morphine was THE SIGNAL that I was turning THAT CORNER. To me it meant that I was giving up and giving in. That the first bitter taste of that medicine meant I was ready to climb upon my deathbed and morphine myself away. So I adamantly refused to let him call.
Two things worked in my favor: 1) I can hold my own in a toe-to-toe with most people, and 2) Tim knows that hospice patients need to keep control until the time comes when they are no longer able to make decisions. He knew I was making the wrong decision — and I knew I was making the wrong decision. But it was my decision to make.
By 9 PM something weirdly awful happened. I’d been having occasional headaches for weeks. Not the pound-pound-pound kind of headaches, more like a pressure kind of headache — mostly situated on the left front skull area — the place that has cancer in it. And on occasion I’ve been having lower jaw pain on the opposite side of my head.
On this night, I realized I had a skull.
Let me explain what I mean. We all have elbows, but unless you smack your funny bone and feel the tingle, you don’t go around all day saying, “I have an elbow and it has a funny bone.” And we all have a heart, but unless it’s beating rapidly, or oddly, we don’t really think about our heart. It does what it’s supposed to do and we let it.
On that night I knew I had a skull and it felt like it was a helmet — one that was w.a.y. too tight. And when I touched my face, particularly the bones under my eyes, it felt like the slightest pressure would break them as easily as if they were a pretzel.
I kept my mouth shut, made my nighty-night trip to the bathroom — my walker taking a bit of punishment along the way. I looked out the window at a very dark yard for a few minutes, then returned to my fabulous leather prison, took my nighttime Tramadol and Xanax, grabbed hold of my comfort stones and sent Tim away.
He was pissed.
I was pissed and I was scared shitless, but I just couldn’t take the morphine. I just couldn’t. I wasn’t being stubborn, I just couldn’t go there. While I waited for sleep that didn’t come, I wondered how affected my skull was and how much cancer had found its way to my brain. At 1 AM I took another Tramadol and was rescued by sleep — or I passed out.
Potato – Po-tah-to.
Tim woke me around nine Sunday morning to get ready for our conference call with a representative from O’Connor Brothers Funeral Home. Yipeeeeee! We both put on pleasant voices and I explained what type of services I want, what type of casket I want so my Mommy can spend a few minutes with her girl, and what urn I’d like to spend my days in until someone scatters me at sea — or until I end up in the vacuum because Butterfingers Tim drops my urn and I’m scattered across the carpet — the wall-to-wall carpet that goes from one wall to the other in our living room.
When the $9,500 restful slumber conversation was over, I texted back and forth with Kathy about Harry Connick, Jr. and, after many minutes, I texted Kathy that I finally remembered his wife’s name is Jill Goodacre.
A personal triumph!
I shut off my phone and dozed here and there until early evening. When I turned it back on, a call came in and I found myself on the conversational merry-go-round with Denise, then finished my night with a short chit-chat with Doooooooooooooooooooon.
As for Mr. and Mrs. Wonderful, we shared very few words that day, and those that we did share were on the snippy side of things.
I’ve mentioned I’ve been forgetting things — big things: like my final book, Alva — little things: like I’m wearing my glasses and bitching about the fact that I can’t find them.
“Where are my damned glasses?” I’ll call out.
Tim comes running from upstairs to help in the search, and points to my face. “They’re right there.”
I touch the tortoiseshell frames and roll my eyes, “Good to know. Now maybe you should go look for Carmen Sandiego, I think he/she (?) is still missing.” That exchange was said in jest — back when we were still on the same page and the page had quotation marks on it because we were still speaking to one another.
A sidestep here to illustrate how ‘off’ I am in the noggin sometimes. I called next door.
“Hannah, why does Hadley think unicorns are mystical?”
“Because they are.”
“What are you talking about?”
“What are YOU talking about?”
“Unicorns were real once.”
Hannah laughing, “When were they real?”
“I don’t know, but Hadley showed me a video this morning and unicorns used to live in Argentina. Ask her.”
Hannah calls Hadley to the phone, “Hadley, are unicorns real?”
Hadley laughing, “No, they’re mystical.”
“MammyGrams said you showed her a video and it said unicorns once lived in Argentina.”
Hadley laughing her ass off, “Wooly rhinos once lived in Mongolia.”
See, noggin problems.
Long story short — too late! Sunday, we were living in the land of Husband Hibernates Upstairs — Wife Wallows Downstairs.
Sidestep here, the verb ‘wallow’ doesn’t technically mean what I’m using it for here. So Andria, before you go all Warden on me, the first time I heard ‘wallow’ used this way was on the Gilmore Girls when Rory and Dean broke up and Lorelei told Rory she needed to wallow. So — if it’s good enough for Lorelei and Lorelei, Jr., it’s good enough for me.
BTW Andria, I’m sort of enjoying these one-sided word debates even though I’m missing you in the most profound ways. Muah!
Okay, back to the story. I feel I need to offer a defense because Tim is usually the one that garners empathy during any raised voice altercations between Mr. Wonderful and that woman he married.
I tried to explain to Tim why I was reticent about calling hospice. “I need two things to keep me sane and relatively happy while I await the arrival of the Grim Reaper. I need my arms and fingers so I can type, and I need my brain so I can think about something to type. My brain is already messed up — I’m quite sure morphine will make things worse. It’ll help the pain, but it will make me stupider, or more stupid, or whatever. I’ve accepted that I have to sit my ass on a recliner 24/7. I’ve accepted that every time I get up to pee I fear I’ll hear the snap of a bone. I’ve accepted that I’m going to die soon. I’ve done some really hard work and gone to some really dark and lonely places thinking about leaving my loved ones — so is it too much to ask that I not have to take morphine yet?”
He went back into hibernation.
Things were really tense all day Sunday and early Monday morning. Nurse M was coming so I asked Tim to get me my purple V-neck tee shirt. He brought me my purple turtleneck.
I growled. I wanted to smack him.
At the snap of a decision HE made, he dragged my ass into a metaphorical game of chess, quickly jumping my pawn and moving a space to the left, “It’s really cold. You should wear the turtleneck.”
I metaphorically tipped the board, “I’m sweating my ass off from the cancer pill I’m taking. I want my tee shirt. Jesus, Tim, could you please just bring me what I ask for, and, by the way, stop finishing my sentences — if I’m struggling to find a word, let me find it, and when I tell you I don’t want something, can that be it? Or do I have to say it 2, 3, 4, 5 times. Pick a number, so I know what the damned rules are.”
“For fuck’s sake, I’m trying to help.”
“Don’t!”
Jessica appeared at the bottom of the stairs wearing a concerned look and whatever the hell she sleeps in, “What’s going on?”
“She doesn’t want to wear the turtleneck,” he snapped and stormed upstairs.
Jessie went to get me the purple tee shirt I wanted, waited for me to dress, then sat across from me as I railed against everything, ending with the thing that was bothering me most. “Just because I’m different, and losing words, and getting close to the place where I won’t be able to make decisions — I’m not ‘there’ yet and I want people — I want him — to stop making me feel —”
Nurse M knocked on the door and walked in.
She found us in tears.
“Sooooo, how are things going?” she said with a tone that I read as though she knew — the shit fest has hit the fan.
I jumped right in, “Tim is hovering, he’s pissing me off, and he might need your nursing services if he doesn’t leave me alone.”
“Okaaaaay. Tell me what’s going on.”
“I had a bad day on Saturday and Tim wanted to call hospice and morphine my ass up, and this morning I asked for ……. for ……. something and he brought me something else. I can’t remember what it was I asked for, but he’s doing shit like this all the time. Like if I ask him to put my pen on the end table, he puts it in the drawer, and I repeat that I want in ON THE END TABLE, and he says it might fall off during the night so it’s better in the drawer, and I say it might be better in the drawer, but I want the fucking pen on the end table. I don’t know why it matters to him where I put my pen, so long as I don’t impale him with it, and shouldn’t my word be the last word?”
She nodded and said, “Yes.”
I smugly sneered at Jessica. My smugness ended pretty quickly.
“Tim was right about calling hospice,” Nurse M said.
“I know and I knew it then.” I told Nurse M all the stuff about turning corners and giving up and giving in, and not wanting to be so drugged up I missed the rest of my life, and I ended with, “And I know Tim is hovering and trying to do things because he’s trying to fix something he can’t fix. He feels helpless and he’s trying to offer comfort in the ways he can and he doesn’t want to see me in pain and he needs to take care of me. I know all that, but he’s already taking care of me, for Christ’s sake, I’m not even allowed to walk to the bathroom unescorted. I’ve had just about all I can take with people doing and suggesting. I know I’m losing it in my head, but I’m still here.”
“Yes. And you need to help us keep you here.”
When a hospice nurse lectures you—you listen.
In a very nice way, Nurse M reminded me that I have already lost my battle with cancer — that I am going to die from the disease — that it just hasn’t happened, yet. That my body is fighting a losing battle, but it is still fighting. And so far I am doing really well. But when my body tells me what it needs — I need to listen. When I’m tired I need to sleep. When I’m nauseous I need to take the meds and try to eat something. When I’m in pain I need to take all of the normal meds. And when nothing is working I need to call hospice.
“Sheryll, we want you to keep eating and we want you to have peaceful sleep and we don’t want you in pain. So if you need morphine to get you over a bad spell, you need to call hospice and take the morphine.”
“But taking it feels like I’m waving the final white flag — the one the Grim Reaper is waiting to see.” (I’m not sure I said that to Nurse M, but I said it to someone).
She assured me that it is a very common thing for patients to balk at the first dose of morphine — for the same reasons I was saying I didn’t want to take it. And then we entered into an agreement: I wouldn’t suffer with nausea or pain for more than a half-day. That if my regimen isn’t working I need to make the call. And then she hit the clarifying nail on the coffin.
“Because you dug in and didn’t take the morphine, you suffered all day Saturday and slept most of Sunday. There are a finite number of them left, and you need to do everything you can to enjoy them.”
My bad — but him, too.
Tim always makes an appearance at my nurse visit. There was an audible sigh of relief from Nurse M when he came downstairs.
Jessica read the nurse’s thoughts and cracked up, “See, he’s still alive.”
Nurse M cracked up, “I was wondering.”
Tim cracked up, “I’ve been the topic of conversation I see.”
“Yes!” I pushed in, “and you need to stop trying to fix me, and stop interrupting my sentences, and stop telling me to do things your way, and stop hovering — oh, and I should have let you call hospice.”
“I know,” the Smug One smugged.
Andria – forget it. I’m a lost cause on this!
So I learned my lesson. Tim learned some of his.
He’s still bugging the crap out of me — occasionally. But things are what they are. Neither of us asked for this huge helping of crap, and neither of us should be expected to handle it well all of the time. Furthermore, at the crux of it all, there is a husband and a wife who struggle from time to time with the dynamics of this shit fest — and even on the best days — and admittedly our recent days haven’t been good, let alone best, we’re sharing them as best we can.
And one last thing about hospice.
I pray none of you are ever told that you are terminal and there isn’t any hope from a medical standpoint. But if that happens, I’d like you to know this:
There is always hope in hospice.
The hope is that you live a pain-free day.
What more could you ask for?
Nothing, really.
And I want you to know there’s hope that Tim will survive MY terminal illness.