61. Untethered
A Bit Untethered
The thing about not having a future — it leaves you feeling a bit untethered. At least that’s how I’ve been feeling. As soon as I learned I was dying, there was a heightened sense of urgency about some things — and an almost crippling sense of panic about everything else. Just the act of breathing became difficult — and the ordinariness of breath pulling in and breath pushing out seemed like victories rather than normal happenings.
Urgency and panic became tightly twisted with no discernable distinction between the two. I had no idea where one thread ended and the other began. Within days, the urgent things revealed themselves as being obligatory — devastatingly obligatory. I needed to tell my family about my impending death, and I needed to plan my funeral, and I needed to write letters to Tim and the girls, and I needed to get my financial things in order, and I needed to deal with my publishing responsibilities.
The things that caused panic — crippling panic — were way more difficult to identify and impossible to harness. That’s because bouts of panic rolled in like waves — day and night. Some episodes hit with the fury of an ocean storm at high tide — others did a quick churn at the shoreline leaving no time to deal with the underlying cause because the undertow pulled whatever it was back to sea — only to return it again and again.
I’m several months into the process now and I understand some of the underlying causes of the heart-pounding, tear-inducing, grief-fueled panic. At the forefront of my attacks was the question of when I will die. That question is still there, tumbling in the surf at the shoreline.
Last November, I was given an expiration date much in the same way perishable grocery items are given a ‘sell by’ or ‘use by’ date. The rather vague information for a dying woman — and for a carton of milk — is pitifully parallel and they are put into the universe with no real concern about specifics. Consider this recent go-around when Tim baked Marchrie her ‘broken wrist’ cheesecake.
Before I get to that, consider for a minute how wonderful Mr. Wonderful is that he offered to or agreed to make my sister her favorite dessert. I can’t remember how the conversation went, but I can remember that he shopped for the ingredients and planned some baking time into his busy schedule.
And. Then. This. Happened.
“Shit,” he mumbled from the kitchen.
“What?”
“The ‘sell by’ date on the sour cream was five days ago. I just bought it yesterday. That pisses me off.”
Silence from me because I knew where this conversation was heading.
A groan came from the kitchen. “So is this still good?”
“It’s sour cream. I’m not sure we’d know one way or the other — unless it’s blue or something. Is the date a ‘sell by’ date or a ‘use by’ date?”
“Sell by.”
“So there’s some after-the-sale consumption time factored in.”
“How much consumption time?”
“No clue.”
“We shouldn’t have to be talking about this.”
“No argument here.” Pause. Pause. Pause. I have absolutely no insight as to why I started Round 2, but I did. “Everything should just have a ‘use by date’ — I think eggs have that.”
“Nope. Eggs have a ‘best if used by’ date.”
“Are you seriously reading labels right now?”
“Just on the stuff I’m using in the cheesecakes. So far, sour cream and cream cheese are ‘sell by’ products and eggs and graham cracker crusts are ‘best if used by’ products. That label is less ambiguous, but it still leaves room for guessing. This labeling system sucks. If it really matters that foods be eaten by a certain date — the labels should say ‘eat this crap by 4:30 PM on March 12, 2022 or toss it into the garbage.”
Pause. Pause. Pause. I started Round 3. Don’t ask. “There’s a way you can check if eggs are still fresh.”
“How?”
“Put them in a bowl of cold water. If they sink, they’re fresh.”
Just so you all know, I read that tidbit online the last time Tim and I were trekking across this ‘sell by — use by’ wasteland. I remembered the helpful hint. He did not. That’s sort of the story of our lives together. My hubby vacillates between times when he participates in ‘active listening’ AND times when he ‘Just Isn’t All That Interested’ in my useless tidbits. We’ve been married almost 36 years folks — so I don’t blame him one bit for zoning out!
The pissed-off-chef put a couple eggs into a bowl of cold water, watched them sink to the bottom, declared they were fresh to use, cracked them open and got on with things. The recipe yields two cheesecakes, so I can attest that the ingredients were perfectly fine and the finished product was absolutely delicious.
Okay, where were we? Right — I’m obsessing about the ‘when’ of things. I ‘managed’ the panic attacks of not knowing ‘when’ by choosing dates I hoped to see — Christmas Day, my 64th birthday, and New Year’s Day — they were my first combo goal. After that, I hoped to navigate safely through a Minesweeper grid littered with important dates — Tim’s birthday: February 26th, Jessica’s birthday: March 5th, Hannah’s birthday: April 4th, and Marjorie’s birthday: May 1st. We are halfway through that set of hopefuls — and smackdab in the middle of those really important dates is MLB Opening Day: April 7th. That was my new goal AND I can’t even begin to tell you how eager I am to see my guys take to the infield and outfield —— it’s something I always look forward to — this year, it’s a bit more exciting, for sure.
Having said that, I set a new goal. THIS DAY far exceeds any goal I have ever set in my entire life.
I need to live until Mother’s Day. May 8th.
I need to be here for my mother.
I need to be here for my daughters.
I need to be here for my granddaughter.
Really, friends. I need to be here, for Mother’s Day.
It’s my new goal. I would appreciate your positive energy. Thank you.
Some Important Information
There are some things you should know about the period of time that surrounds the writing and the posting of my blogs. When I begin a blog, I may stop halfway through, begin another one and post that one, and then circle back to the previous one. I’ll be the first to admit that my writing habits aren’t tight and my finished products don’t always take the reader along a straight line. I’ve decided that that’s a charming element of my newest form of writing. My swoopy-swoop-style is part and parcel of my not planning my blogs — a thought pops into my head, I type it and pull the thread. With very few exceptions, the end result is something I needed or wanted to get off my chest, or it’s something reflective and appreciative in nature.
I try really hard to stay within chronological lanes so that you can follow along on the progression of things — but I may not always hit the mark, particularly when it comes to relaying information on Chewy Louie — the cancer munching rodent. Guru Jessica named the rat — thank you very much — and the name perfectly suits the little bastard. Anyway, by the time you get a blog to read, a week or more may have passed between the thinking and the thread pulling — and the pain I was experiencing back when I wrote the blog is under control — or a whole new round of pain has begun.
So, keep that in mind if you think things don’t quite match up in the day-to-day of my storytelling.
Women
Tough And Tender
And So Willing To Help Me
Nurse M. This woman chose a very unique profession — one I would argue is more like a calling. She is a consummate professional, medically speaking, which is a really important thing for sure, but now, she is not only part of my dying, but she is also part of my living. She provides excellent medical care and knowledge AND she reads all of my blogs. Why? Because she knows how important my writing is, and she knows that my blog reveals things about my mental and physical health.
Kathy. My sister-in-law has been on the frontlines with me since Day One — with a sympathetic ear, and with words to inform and to encourage. Through it all, she has shared her heart — the one that frequently shows signs of breaking. She pushed-in with me and pulled-back with me — when I thought hospice was the right choice — the first time and the second time. And she said, “Yes,” without hesitation — because I needed a bit of rescuing.
An important thing to remember.
Kathy and Tom are vacationing in Florida.
When I need her, that fact matters little to either of them.
Out of the blue, I asked Kathy if she would look at my nuclear med body scan results — the ones I’d previously sworn I’d never look at — the ones I looked at — the ones I needed a witness to. The enormity of the event pulled me into a vortex of fear and panic, and I needed someone inside the swirl with me. I needed Kathy.
I explained the situation. There was absolutely no Q&A about why I looked — and there was no, “Well, duh,” when I told her I had a very bad reaction to the images. I asked if I could send them to her (I don’t really remember why I needed her to have them, but I did). I said we didn’t need to discuss them, and that I was going to delete the files as soon as I knew she’d received the email.
The next day she called to check in on me, post one of my hospice visits. We chatted about my Stable Mabel status and then I said, in reference to the scan imagery, “It’s bad, isn’t it?”
There was an exhaled groan on her end and then the word, “Yeah.” It felt to me as though she wanted to say something along the lines of, “Holy Shit, yeah it’s bad!”
Maybe it was me who wanted to shout that.
Jessica. My younger daughter is my hospice buddy — the one who pushes into this shit fest with consistent physical and emotional support. She never passes by me without a tender touch and a loving word and pulls up a seat when I’m upset or when I need to talk with someone about anything.
Hannah. My older girl takes every one of my calls and patiently listens to dead air when I can’t find the words to say or they just can’t be said through my tears. She is doing the supportive lean-in with her child — and preparing herself for the hard landing that Hadley and she will have — together.
Donna. The rock I have always banged against when things scare me. The person to whom I can say a.n.y.t.h.i.n.g. without worrying about how the words come out of my mouth and who they’re about. Donna will be the person saying a few words of her own — at her friend’s funeral gathering. I know how hard it will be for her to deliver my eulogy. I know how hard it will be for her to lose her friend.
Jennifer and Debbie. These two women brightened my doorstep with renewed friendship — even though they know I’ll be leaving and they’ll be grieving more than they would have had they stayed on the protective sidelines. That tells you all you need to know about their character — it doesn’t tell you how much I need and appreciate their love and support.
Mom. The slightly hunched woman with aged-blue eyes, and newly-etched lines of anguish on a face that resembles mine. Mom tries so hard to make this horrible ordeal as easy for her child as she can — just as a mother would.
Marjorie. The sister who currently sports a black cast on her right wrist — the sister who silently endures the pain of a breaking heart — the sister who does all she can to make sure I feel loved in every way possible. The loving and caring woman who shoulders the grief of our mother — just as a daughter would.
Denise. My sister-in-law who reaches across the states with calls and texts to tell me tales of this and that. She doesn’t dig deep into the whole cancer thing with me because she’s the one sharing the cancer thing with Don — the brother who spends an hour on the phone with his sister — every Sunday night — the guy who most often ends the call on choked-back-tears.
Joyce. The woman who never misses an opportunity to take me away from this shit fest armed only with her cell phone. Her pictures and videos of the ocean come with regularity. Some are sent from her place in Maine and some are sent from her winter place in Florida. All of them are sent with a text that lets me know how much she cares.
And lastly, my Three Amigos —— Andria, Nancy, and Jessica. These women have leaned-in with love and support — each in their own special way.
I’m going to spend a few minutes discussing Andria. You all know that she sends me handwritten note cards with passages from my books on the outside, and editorial comments on the inside. Those Kraft brown cards and envelopes still come and I love them — because they connect me to who I used to be (a novelist) — and to what I used to do (write novels).
Please believe me when I say this: I am grateful for every minute I am able to write my blog. It has saved me. Literally saved me from the long 24/7 stretches of sitting and thinking. When this ordeal began, I’d just started the first book, Treble Clef, in a new series, Netti Investigations. That story is written in my head and I’ve begun the second and I know what would have happened in the third and fourth. The manuscripts will never be put to paper — and that is okay — because I am still writing them.
In the normal course of things, I would have written them, The Warden would have edited them — The Goddess would have published them — The Guru would have displayed them on my website and splashed them on social media.
But, alas, the publishing team I built has disbanded.
My favorite women of all time are off doing other things.
Great things. Thoughtful things.
Let me tell you what Andria has been doing — for me. A little backstory, first. A while back, I wrote a blog. I’m not going to check how far back because I don’t like to reread what I’ve written — more to the point, I’m not going to check because I don’t need to.
I received four greeting cards from Andria, recently. The itty-bitty things are 3.5 x 4.5, and each has a picture of a happy tree on the front. It’s the same tree — the only difference is the color of the leaves. They let you know right off that they represent the four seasons: spring green leaves, vibrant summer leaves, rich autumn leaves, icy winter leaves. Inside, each card is a handwritten quote of what I said to Hadley when I told her I was dying.
You may recall.
“The newness of springtime is like the newness of a person’s life.” ~ MammyGrams
“During summer, leaf buds turn to big leaves that fill the trees, and the flowers get really big and spread along the stonewall.” ~ MammyGrams
“Oh, fall is a really wonderful season, and it can be a really long season. In people’s lives, it’s when they kind of have everything they want in life.” ~ MammyGrams
“You’re near winter. And that’s when things die.” ~ Hadley
Inside each note card were loving words from my wonderful friend in Texas. I treasure her sentiments, but I hold deep in my heart the realization that she knows exactly what I need and she takes the time to show me just how much she cares.
An Important Question
Debbie and I were deep in the weeds in conversation recently and she asked what the pain is really like for me. After some contemplation this is how I described the current state of things, to her — and then to Nurse M later that week.
I am in discomfort 24/7. Discomfort is not pain. Think of it this way — you spent the entire day outside raking leaves, and hauling them onto a tarp, and dragging them across the yard, and pushing them over a stonewall. When you finally sit after your daylong workout, you’re left with a full-body-ache and an intensified ache whenever you move this or that — and on top of that, there’s an overwhelming sensation of fatigue in your muscles and deep down to your bones. Now add this — if you touch any part of your body, it feels as though you’ve pressed against a bruise. The simplest contact between your hand and an arm or a leg or your face or your neck, feels like you’re pushing against a bruise.
The aches and pains you’re experiencing might feel good — after all, you spent the day outside getting fresh air and exercise, and after a few OTCs and a couple days of relaxation, the aches and pains will lessen and then go away.
That overall discomfort never fully goes away.
It gets dulled by the pain meds and it is manageable.
I have become very good at whisper touching now, like when I need to move away my hair from my forehead, I do it softly and slowly. And Tim is the one who is in charge of putting a special lotion on my legs because: 1) I’m not supposed to bend because of the lumbar spine cancer, and 2) because rubbing the cream on by myself is just too painful. And when I have an itchy back, Tim needs to help with that because my entire torso hurts if I try to twist and reach behind. It just hurts — too damned much.
Tramadol absolutely helps with the overall aches and pains — the raking the leaves aches and pains — but the powerful pain pill does its real work on mitigating the Chewy Louie pain. That intense stuff is what I refer to as breakthrough pain. Those episodes can easily take my breath away and leave me in tears.
Initially, when the pain was in my thigh and hip region, it felt as though the rodent was chomping hard and there was a rippling, traveling pain. The pain in those areas now feels like someone takes a baseball bat and smacks my leg, over and over and over. Without question, the thigh and hip pain is the absolute worst.
When the pain is in my shin, or shoulder, or ankle, or wrist, it feels like someone is hitting me with a small hammer — the pain is swift and precise — and tends to last a bit of time. When the pain is in my spine — it is mostly in the lumbar and thoracic area. Mostly it is a deep ache and it has been accompanied with an occasional smack.
I’ve gotten really good at describing pain. That’s because I have to do it twice a week with Nurse M. In fact, I have to answer the same set of questions every time she visits. That way, she can track my answers and evaluate — and watch for a decline.
Her questions.
“How are you feeling overall? Any pain right now? Any pain since I was last here? Where was it? When did you experience it? How long was the episode? Did the Tramadol help? Have you had any headaches? Were they the tension kind or were they like a vice grip? Did you use Tylenol? Did the headache go away? Have you had any nausea? Did you use Zofran? Did the nausea go away? Right away? Are you having trouble sleeping? Are you waking because you’re in pain? Do you take a Tramadol if you wake? Does it help? How quickly? Are you having any trouble ambulating? Any pain when you’re standing or walking? Any skin issues? How’s your appetite? Are you eating? And you're drinking? How many fluid ounces? Any problems with your bowels? How about urination? How about with your breathing? Are you still able to care for yourself? Do you need to take a break between your sponge bath and getting dressed? Does it hurt when I touch here — and here — how about here?”
I almost kicked her — even though her touch was whisper-soft.
“I’m sorry. I hate to cause you discomfort, but I need to gauge. You’re experiencing more pain on the left side, today.”
After the Q&A, Nurse M. takes my vitals, smiles wide and agrees with my proclamation.
“So I’m Stable Mabel?”
“Yes you are.”
The feeling I get when she agrees is similar to what I experienced when I got a Gold Star on a school paper in kindergarten.
After the medical stuff has been taken care of, we usually delve into areas of concern. It is during these conversations that I’ve addressed some of the things that have caused panic — big and not so big.
I think you’d all agree that ‘fear of the unknown’ is difficult for most people. Whether you’re dying or not, there are things that cause humans fear — and losing our lives is at the top of the list. Of course, that was before the recent news reports about parachuting spiders — I mean seriously WTF. I’m going to steer clear of that incredibly terrifying discussion and stick close to far less terrifying topics — like my impending death — thank you very much.
Anyway, I have made peace with my very early demise — but that should in no way imply that I don’t have anxiety over when exactly it will happen OR how it will happen OR if it will be sudden OR if it will be a long, slow, crawl.
The unknowns surrounding all that have pushed me to say preemptive goodbyes to people in a variety of ways. There have been the ‘just in case I have a catastrophic event’ talks AND the ‘just in case I am unconscious and lingering’ chit-chats. I know it’s going to be one or the other — fast or slow. The thing is this: I may never know which it is.
And as hard as the waiting and wondering is,
I wouldn’t have it any other way.
This time that I’ve been given is the greatest gift.
Truly.
I plan on delving into the many reasons I feel that way in an upcoming blog — but, in a nutshell, my mind has been opened to a new way of thinking. I shared my thoughts with Father Dude during a recent visit and I’ll tell you about the conversation, and about The Stone he gave me — it’s a really cool story.
And Now — The Point Of This Blog
It Is A Warning
As I noted, I don’t normally plan out my blogs, but there is something in the works — and I feel you need a heads up.
Remember the whole ‘When I’m 64’ thing? I was hellbent on making my birthday milestone — and I let everyone know. I received so much support beforehand and so many congratulations afterwards. It was wonderful and it gave me a tremendous boost. So thank you!
Well here’s something new: ‘When It’s 64’ — it’s in reference to Blog 64.
A blog you may not want any part of.
After much consideration and conversation with people who have seen my body scan images, and after many viewings by Yours Truly, I have decided to put a rendering of my scan up as a blog. For HIPAA reasons, I don’t want to post my actual scan, so Tim is working on an exact rendering. There will be no words on Blog 64 — so for those of you who do not want to see it, you don’t need to.
Blog 63 will explain why I decided to post the images. Blog 65 will be my angry blog — the one that explains why I should not have been encouraged to get a bone biopsy — or more pointedly — why I should not have been subjected to a bone biopsy.
Had I seen my scan images when I was being asked to make really important medical testing decisions — I would have NEVER had a bone biopsy.