88. Housekeeping
It all began with a text.
Sunday night, minutes after I’d sufficiently ‘patched’ myself up with narcotics, Nurse M texted me. She asked if she could bring a trainee with her to my visit on Monday. I received this request once before and answered it with, “Sure, I think that’s okay.” I agreed in spite of the fact that I’m not entirely comfortable with extra eyes and ears on me during a medical visit. But I look at it this way: if a nurse trainee is fortunate enough to learn from Nurse M, then she should be given the chance. So on this point, I’m generally on board, especially since Nurse M asked first.
You know where permission isn’t sought before an invasion of extra eyes and ears — your hospital room. Let me state for the record, I am not a fan of tagalong teaching. I mean don’t you just hate it when a group of medical students follows your doctor into your hospital room — uninvited and without warning? I know the whitecoats are there to observe and learn, but where else is the practice of bringing a horde of people wherever you go even remotely acceptable?
Personally I think one medical student or intern should be allowed in each patient’s room. A selection system for the caravan of whitecoats should be devised by Doctor Showoff. The system could be done alphabetically, or by height, or here’s a thought, an auction caller could be hired, “Patient A - radiation burns - right breast. I’ll open the bid at $35.00, do I hear $40?” The trainee who wants to see the burned boob bids high, and the proceeds go to help pay the astronomical hospital bill of the patient. The program could be called Doc Gawks. The Doc Dude or Doc Dudette who wins gets to go into the patient’s room with Doctor Showoff then reports back to the others, “Yeah, so Doctor Showoff asked the patient if the radiation burns to her breast are causing discomfort and she said, ‘Duh.’ And BTW you guys should get your money ready, Doctor Showoff is gonna ask Patient B, you know, the woman who fell out a fourth floor window, if she’s afraid of heights now.”
I have one more furthermore, who am I kidding, I have a shitload more, but I’ll refrain and just offer this. Hospital room visits should be mandated to follow the Plus 1 rule. Most of us have been extended the courtesy of bringing a Plus 1 to an event. I contend that if the offering of cocktails and canapes relies on the etiquette of a Plus 1 request, then a private viewing of a patient should require the same request, and it should be in writing, and it should be signed in triplicate by whomever is wearing the Johnny.
Okay. Don’t know where all of that came from.
Don’t care.
Getting back to Nurse M, my texted response to her Plus 1 eyes and ears request was a bit snippy, I’m sort of thinking about canceling. I’m sort of in a funk and can’t push my feelings down. Just a few bad days. Is that okay? Before you guys start with the hairy-eyeball judgments of my words and tone, keep in mind that I’d endured the better part of 24 hours in incredible pain after having gone 36 hours without meds. And I was a bit peeved at the bomb I felt Nurse M dropped on Thursday as she skipped gayly down the sidewalk at 183.
In any event, her response to my ‘sort of’ cancel text was nicey-nice and full of flexibility which I found irritating. Basically, she said I could cancel any appointment and if I canceled Monday, she’d clear a spot for me on Tuesday or Wednesday, and the appointment didn’t have to include the trainee. See, nicey-nice. How dare she be so accommodating? I realized immediately it wasn’t right to cause her all that work simply because I was having a pissy-fit, so I texted back; I definitely don’t want extra people…I’ll keep tomorrow but I doubt I’ll be chatty.
When she parked her ass on the mission-recliner the next morning, I let her have it. My opening salvo came in the form of four soggy tissues. I was exhausted, angry, still in mild pain here and there, and incapable of pushing against my tears. I started off with the thing that bothered me most. If you’re thinking the most urgent discussion point was the sampling of, “Lord, just take me now,” pain I suffered through the previous days, you are wrong. I started with, “You need to tell me what we need to discuss.” I got a blank stare. “You know the things you said we need to discuss on our next visit.” Again, the blank stare. I pulled out the verbatim, “Nothing to be concerned about, but there are some things we should discuss. Nothing urgent. Maybe on Monday. So don’t worry.”
The penny dropped on Nurse Ratched.
It so could have been a house a la Oz.
“You’ve been—”
“Torturing myself with that?” I interrupted. “Yes. Because that’s who I am.”
I can’t give you her exact quote because my tears got the better of me, but she easily accepted that it wasn’t the best step giving me an open-ended sentence. That she should have known I’d do what I did. Should have. Would have. Could have. Did have!
The look on her half-masked face was one of concern, I think. Her personal reaction to my experience was very empathetic and apologetic. As I’ve said before, the hospice nurse is a very rare breed; they live to provide care and comfort — that’s it — how they accomplish that is by using a very unique skill set. Nurse M felt the sting of my arrow which bothers me, but I’d been through semi-self-inflicted hell, so I’m cutting myself some slack.
Bottomline: it goes to show how important communication is between the two of us. In all fairness, I was the one who turned her simple statement into a Hiroshima event. After Nurse M tended to all of my emotional shrapnel wounds, she handed me the bomb I knew was coming. “We need to discuss getting you a personal care attendant.”
Surprise!
Nope!
We all know I am getting physical messages, big and small, that my spinal column is weakening, aka collapsing. Bit by bit, section by section, I’m having physical affirmation that, “Shit’s Going Down.” I’m sure you realize those are my words. Nurse M is a professional and would never put anything into those terms, but she might nod her head when I say them. What she basically said was my vitals are strong, though there is up and down movement in my blood pressure of late. But overall, I am holding my own against the cancer and might make it through the summer, but the spine is an active part of the story now.
So what’s a girl to do?
Take care of her spine.
How?
Step One: Bathroom trips only.
Step Two: Bathroom trips no longer include time for personal care.
I hope you looked at the personal care doodah through a wide lens. There are two main reasons for my PCA meltdown. I have an aversion to the indignity of partnering my daily scrub-a-dub-dub, but the real issue, of course, is I’m losing that last bit of control over my life. I mentioned that to the Irish One who babysat me while the family was at Hadley’s Birthday Party - Part Two on Saturday. I’ll tell you about those lovely events in a future blog. Anyway, just when I thought I’d worked everything through about PCA, the irritating Irish One offered a different perspective which gave me another whack at the thinking process.
Since November, I lost control over my ‘normal’ life. The wonderful relationships I had with my husband, daughters, granddaughter, and family and friends changed; my writing career was completely upended; the plans Tim and I had for our retirement years came to an abrupt stop; my mobilization and the things I liked doing ended: like hanging in my office, and showering in my spa, and cooking and cleaning (the last part is a little surprising to me, but I miss putzing and dusting). Anyway, the list of things I no longer have control over could go on and on, but you get the gist. The life sentence levied against me changed everything; I internalized the change as I no longer had any control over anything.
“Not so,” said Jennifer Lane Courville.
A little reminder about Jennifer from Blog 24, Auld Lang Syne:
When I emerged from my full-time-stay-at-home-mom-stint, I took a part-time job at the local newspaper in its advertising department. All I had to do during my 15-hour work week was slap on a headset, listen to customers describe what they wanted to part with, type the ad…and not delete the ad…oh, and I needed to sort out the rapid fire, Irish-brogue spewing from the worker to my right — the one I asked repeated questions of…I’ll admit that on occasion my semi-daftness about phones and computers got her Irish up…It wasn’t long before I deciphered the lilting spew of the Irish One…and found myself a friend — a really good friend from across the pond.
Strong. That word will mean something soon(ish).
Now back to this blog. I would try to do a verbatim quote of Saturday’s spew, but there’s NO WAY I could type as fast as the Irish One speaks. Her bottomline-brogue-blast about the PCA stopped me cold, “The only reason you’re still here, Sheh, is because you took control. You said no to the oncologist’s hoops for drugs; and yes to hospice when you thought you needed it; and you parked your arse on that recliner for months. You took control of the situation back then and you’re still here. So for fook’s sake let someone else wash your bits and bobs. Take control of the decision if it’s what’ll keep you here longer. You’ve already exceeded everyone’s fookin expectations. Jaysus, ya should’a been gone already.”
Her Irish was up! And I was the beneficiary. After a good laugh, I offered a response, “And if I wasn’t still here, you wouldn’t have to be babysitting.
“Right, there’s that.”
I almost broke a rib laughing, and then we touched on how hard this whole thing has been. Jabbering Jenny added warmly, “You were knocked hard with the diagnosis and all the shit that followed, but you’ve handled it.”
Perspective: Sometimes the toughest shit to process comes down to getting a different perspective, even if you only understand every other word that’s spewin’ at ya. Just sayin.
A different perspective.
Soft. That word will mean something soon(ish).
Debbie Gagnon spent a beautiful week with her husband and kids and grandson and son-in-law and future daughter-in-law at Old Orchard, so I hadn’t spoken with her in two weeks. When she returned, I filled her in about the conversation I had with Nurse M and the medication mishap weekend.
I’m sure you remember that Debbie appeared on my doorstep one frosty afternoon with a banana bread she stole from her daughter. She walked in, handed off the yumminess to Jessica, and got right back into the shooting-the-shit friendship we enjoyed. She’s visited several times since then and when death and dying press into our chit-chat sessions, Debbie listens, offers support and understanding, really well, then wipes away an errant tear or two. She mostly makes our time together about the things that bring joy to my life. When there’s tough stuff to discuss, she listens, pushes her pain deep, and always offers compassionate tidbits. She probably sobs a bit on her short walk home.
This most recent conversation brought more than a few tears to Debbie; some came because of what I was telling her, but the big, fat tears were because of her daughter. Amanda is a surgical nurse who knows her shit, and she has cautioned Debbie on several occasions to remember that I am going to die and that she should prepare herself.
I know where Amanda’s concern comes from. I tried to express similar concerns in a previous blog. Seeing me and squaring up how ill I am is a challenge. I still look healthy, and I’m still able to blog, and I’m upright during visits, and there’s very little talk about death and dying during visits, and I still have a strong voice over the phone. That is partly why I harbored fear that people might be blindsided one day when I up and die. Why? Because sometimes even I forget I’m sick. When I’m pain free and writing my blog, or visiting with Mom and Marchrie, or reading a book, I forget I have a TBA expiration date. I was rightly schooled by the Irish One that no matter who is doing the visiting, or the phone chatting, or whatever it is, no one ever forgets, for a single second, that they will be losing me.
As for Debbie, we have picked things up and have slid right back to the easy relationship we had for years — two women who shoot the shit about life: and if it’s good shit - great; and it’s bad shit - then we have at it. Having said that, Amanda was a good nurse to remind her mom to prepare for the future — and she was a wonderful daughter to remind her mom to prepare for the future.
I just rambled on about how much I know Debbie — I apparently know shit!!! Debbie lives life just on the periphery of center stage, she never seeks the limelight, but she has no trouble holding the floor if she’s telling a story. She is ever mindful of social graces and takes no risks when it comes to discussing things. That’s why she asked if she could share the conversation about PCAs and my painful weekend with Amanda. She got my nod, and the next thing I know I get this text.
Debbie: Hi, I talked to Amanda about your personal care concerns. She said she’s seen hundreds of naked bodies and has had full conversations with women while washing their vaginas. (Her words). She said she doesn’t even think about their nakedness. Just thought that might put you a little bit on ease.
Me: I love you both. It does help. And BTW I think this is the first text I got with the word vaginas. Never would have bet it would have come from you.
Debbie: NO KIDDING.
Me: Having heart palpitations? Sweaty palms?
Debbie: Yeah, had trouble writing that word but I had to.
A few days later.
Me: Do you mind if I use the vaginas story in a blog?
Debbie: Oh brother!!!!! Sure that’s fine.
Me: I know you’re letting me use it because you love me.
Debbie: That’s the only reason!
Me: I’ll be brief and sensitive to your discomfort.
I introduced you to Debbie in the same blog as Jennifer. I wrote in part:
Tim and I transferred Hannah to the neighborhood public school and Joyce McTigue suggested I introduce myself to the Gagnon family further up on Wildwood because their daughter, Amanda, was Hannah’s age and they’d probably be in the same class. Debbie invited us to her house and told Hannah to bring a suit for a swim in the pool…The kids got on great and spent that summer doing the things kids do: biking, swimming, and having sleepovers — and Debbie and I spent that summer doing the things moms do, shooting the shit. We became really good friends and though we lived a stone’s throw from one another, we tended to burn the phone lines with marathon gabfests.
I should have mentioned that Debbie rarely swears, but if the need arises her go-to scandalous utterance is ‘shit’. She’s one of those people who can express her anger or disappointment, or whatever is bothering her, without talking like ……. well, without talking like me. So, to have her text the word vaginas, was one for the record books — at least it was for this blog.
Strong and Soft
In Blog 35, Donna. Sort Of, I wrote:
My bestie, Donna Eaton, is many things. Truth be told, every one of us is a mix of a whole bunch of things, but people tend to grab onto something that becomes the first thing used to describe the multi-faceted human beings we are. I suspect the word that comes to mind by most everyone when describing Donna is: strong…She’s gone through things that would bring most people to their knees, and keep them there. She has an enormous capacity for love, and a very strong moral compass. She’s a straight-shooter, and rarely misses her mark. And as soon as she’s fired off her round, drawn blood, and holstered her six-shooter, she’s all open-arms waiting to shoulder your pain…I can count on one hand the number of times I saw my bestie cry. I’ve seen her eyes well on countless occasions, but she always manages to push her tears back and swallow them hard. So, when I answered the phone a few days ago and heard her sputtering words between anguished sobs, I quickly read caller ID to make sure it was Donna, then I immediately thought the worst, “Oh My God, what happened?”...“You’re dying. And I read your blog. And I’m gonna miss you. And you’re so brave. And I don’t know how you’re doing this. And what will I do when you’re gone. And how are you feeling? And you can call me in the night if you’re sad.”…She took a long racking breath and I pushed into the silence. “Looks like I chose the right person to deliver my eulogy.”...We both cracked up before she started in. “And I’m fucking pissed!”...“About the eulogy crack?”...“No. I’m pissed that you’re dying! I mean seriously, what the fuck!”...“Ah. Finally, something I can work with. A pissed off Donna.”
I mentioned a while back that Donna did some serious damage to her foot. Last winter, she underwent surgery, spent weeks with a casted foot and a wheelchair glued to her ass, then she did the soft-boot hobble a bit here and there for weeks, and the whole weight-bearing regimen. And then she got the okay to come to 183. It was absolutely wonderful to see her, talk to her, laugh with her.
And. Then. This. Happened.
She stepped onto a chair during a physical therapy session and fucked up her foot. I got two visits from her before she was put back into a soft-boot, and told to sit her ass in the wheelchair for an indeterminate amount of time; and BTW, surgery Round Two is back on the table; and BTW when do normal people stand on effing chairs? Why the eff do physical therapists make healing patients do that shit? I mean seriously WTF.
Okay, back on track. This is not a medical mishap story; this is a story about two besties who haven’t been able to be with each other during a very critical time. It’s about two women out of sync because there is so much to say and share, and you just can’t do it through text messages or even phone calls. It’s about trying to schedule a visit in between the time she devotes to helping care for her grandchildren and tooling around her house while seated and upon wheels; and my 24/7 sit-a-thon, and hospice visits and comatose reactions to pain meds, and trying to negotiate rides for her, and all the other shitty roadblocks that have been thrown at us.
I miss my bestie, and while no one could ever take her place, I have reconnected with friends whose natural qualities are the combined qualities of my bestie, Donna Eaton. How fortunate am I that these women love me and are offering the best of who they are as they help me navigate some tough times.
Jennifer is strong and precise in her advice.
Debbie offers me a soft place to land.
And Donna, she is both, and yet
we’ve been challenged by separation.
She is my world, and I miss having her in it.
I worry about all of the women who have pushed in and made really tight bonds with me. Jennifer, Debbie, and Kathy are at the top of that list. And as for Donna, our bond was built years ago, we shouldered one another through some really hard times and laughed more in a month than most people laugh in a lifetime. It pains me that I won’t be here to help her through my death — it pains me that we aren’t together much now, but I keep going back to this: “You’re dying. And I read your blog. And I’m gonna miss you. And you’re so brave. And I don’t know how you’re doing this. And what will I do when you’re gone?”
I don’t know but maybe this separation will help her a bit.
I sure do hope so.
And now, in a recent blog I asked readers to send along a personal letter or note to me about whatever they want to say or ask. It was my attempt to have people take a couple minutes to sit and reflect, then put words to paper. Letter #1 came on beautiful stationery, it read:
June 20, 2022
Dear Sheryll,
Eileen McTigue McDonald is the who that introduced me to your Blog. What a surprise I had to discover your mother lives 9 houses away from me. She is at 1 Inwood Rd and I am at 19 Mayfield Rd. When was a few weeks ago, and where was on Facebook, and Janice Harvey Worcester newspapers. Why, it proves we live in a small world. All connected in some way. If we open our eyes, minds & hearts to see what is going on around us. YOU have the intelligence and gift of writing to do just that. Your courage, sense of humor, love of family is inspiring. Needless to say you have touched my heart with your heartwarming Blogs. I am so happy you have flunked Hospice. You keep surprising your caretakers with your determination to beat this nasty cancer. Your Blogs show who is boss and in control. Keep up your positive spirit. We are all routing for you! Your finished book will educate many to come.
God Bless, Gail Burgess