72. Sick and tired of being sick and tired.
Think about that statement for a minute. Whenever that thought crosses my mind, it causes a push of the heebie-jeebies — the spine racing shivers that go up, down, and up again — simply because that thought pushes in. Because I typed those words my spine is all aflutter with nervous activity. Why is there a push of angst? Because even though I feel ‘sick and tired of being sick and tired’ — it’s not something I’m comfortable saying, certainly not out loud for anyone else to hear. In fact, I am sooooo reticent to put those words out into the universe, that I push them back and swallow them hard. Why? Because I fear they could be seen as being a tad unappreciative, or maybe seen as, “Okay, I’m done with the trials and tribulations of cancer so, come and get me.”
The whole self-imposed constraint of ‘don’t complain about anything’ has become a silent mantra and a bit of a cross to bear. Whenever I have something to bitch about, I clamp my mouth shut out of fear I will be heard — judged — and accused of smiting this bonus time I’ve been given. In other words — in honest words — I’m afraid I’ll be marked for quick removal from my Earthly home just for the offense of bitching.
I use the ample time I’m given each day to run a laundry list of what’s going on with my physical state because that’s really the be all and end all of necessary information. If Nurse M isn’t here asking her questions, then Tim and the girls are asking about this and that, especially if they see a twinge of pain move across my face or witness a tiny, unsteady sway on a walk to or from the bathroom — and then there’s the She Devil who calls everyday seeking an update on my vitals and the sharing of a good laugh or two about stupid shit I say — and then there’s Mom and Marchrie who patiently wait for me to fess up to this or that notable change — and then there’s Donna, Joyce, Jennifer, and Debbie, each of whom long-ago set their soft-peddled requests for truth and honesty — which I gladly give them.
I do my part by sharing the minutiae of pain management, mobility issues, rodent chomping, and a rundown of headaches (rather frequent), and things that really bother me, like my teeth and a tumor thing that has taken residence inside one of my nostrils. Not sure I’ve shared that with anyone other than Kathy, so there you have it.
What I do not share, with anyone, are things that are part and parcel of the long hours I sit on my ass — the internal struggle that comes from stepping near the abyss of self-pity which then sets the framework for silence. Putting a complaint into the universe about being lonely, or feeling helpless, or being a burden to my loved ones, or missing out on living life the way it's intended, or not being able to cook or clean, or or or, and and and, is difficult — but it’s SO NECESSARY for me to do. And yet it’s SO SELDOM DONE.
In my world, a bitch, a moan, or a groan just might sound like a clarion call that I’m done with this life.
I AM SO NOT DONE!
So, I tend to keep quiet.
Given my predicament — the one that keeps me tethered to a leather contraption set in the busiest room of the house is an exercise of weirdness — to say the least. From my perch, I can see the world outside my picture window, I can see all of the things Tim and I painstakingly chose for our humble abode: the bovine-placenta loveseat, the mission chair my mate adores, the pieces of furniture we moved from my writing room, and all of the little gatzies that hold special meaning — maybe because they were purchased on a vacation (like a beautiful painting we picked up on our honeymoon), or because they were given to us as gifts — the ‘why fors’ and ‘who froms’ matter not — the little lovelies matter tons.
Of all of ‘our things’, the one I love most is our electric fireplace. The purchase was a long time coming which makes it all the more special to me. We’d no sooner moved into our ‘starter home’ thirty years ago when Tim began this refrain, “I’d love to have a fireplace in that corner.”
With varying degrees of commitment, we researched what we’d get one day, made tentative plans to get it on multiple occasions I might add, then put the plans onto a backburner, if you will. There were countless reasons why the fireplace remained an unrealized dream of my dude — the house was too full of adults and kids, and all of the paraphernalia owned by said adults and kids — money was tight — and the biggest hindrance to making the purchase — Tim is very particular in his tastes. He wanted a fireplace, but he didn’t want just any old fireplace.
On our 35th anniversary, Mrs. Wonderful gifted Mr. Wonderful with his dream fireplace. It’s a corner unit made of refurbished barn board, has two bevel-glass doors with shelves for showcasing special items, and a black sectioned firebox that pushes off heat and a lovely flicker of amber flames. For those who just rolled their eyes at our ‘fireplace’ — you are entitled to your snobbery — but to Tim and Sheryll, the flick of a switch and the flicker of flames, makes us a very happy couple.
We’ve spent many lovely hours in quiet company by our fireplace.
We still spend quality time together basking in its glow.
You now know what my living room — soon to be my dying room — looks like. So let’s drill down on what it’s like for me being confined there 24/7 for the past six months.
Shhhhh, let’s try to keep this quiet.
I really don’t want to be thought of as complaining.
To the left of my perch, there’s an end table that holds my laptop. To the right of my perch, there’s an end table upon which is a box of tissues, a silicone trivet that protects the top of the table from my water bottle and whatever else makes its way there (mugs of Chase and Sanborn coffee and tall glasses of lemonade are standard fare). Inside the top drawer, easily accessible to me are these things: a green highlighter, two pens, three unopened cards from Andria (they came yesterday), a stack of 4x6 inch notecards, a plastic tray holding my daily strip of pills, a chapstick, a sleeve of square salt crackers, a bottle of nausea medication, a bottle of Tylenol, two Covid face masks, an eye mask for napping, a remote for the television, a remote for the cable box, a remote for the recliner, and a remote for a fan.
That’s it. Those are my Earthly belongings.
My world is such that those are the things I need.
Ergo, they are the things within reach.
Shhhhh. I’m not complaining.
Now, an inventory of my downstairs bathroom — whatever I need to wash away telltale signs of doing nothing. That’s it. I’ve joked in previous blogs that Tim and the girls occasionally dust me. Truth be told, that’s really all that needs to be done. I do more, of course. If for no other reason than I get to be on my feet and I REALLY love the smell of my Dove cucumber and green tea body wash and deodorant.
Small pleasures.
I remind myself everyday — many times each day — how fortunate I am. Let’s face it, no one in the medical community (except Dr. Wonderful) bet I’d still be here six + months after seeing the shit fest of my body scan. The tiniest misstep at any time absolutely could have caused — and can still cause — the end of my days. And then there’s the whole cancer piece of this. Let’s face it, that’s the thing that’s actually going to kill me.
A sidestep. I recently wrote in blog 68: Choosing a place to die.
Nurse M waved at me through the glass of my front storm door Thursday morning. I waved her in with a smile. She said what she always says upon entry, “So how are you doing?”
“I’m dying.” My response was curt and accompanied by an immediate well of tears.
Her medical backpack found the floor with a bit of a thud, her eyes found mine, her ass found her seat. She leaned in — quickly assessed the immediacy of that comment and said, “Yes, but not this minute. So, tell me what’s going on.”
Tears flowed from my eyes, “I’ve been living with a terminal illness. I am dying from it now. I can feel it.”
She nodded and left me to fill the silence. So I did. “My spine is weakening. And I know the biggest worry is a catastrophic event, but for the first time, I feel like the cancer has a really strong hold on me, and I’m not physically able to keep up with its pace. I’m no longer able to go toe to toe. I’m no longer able to push back as hard as the cancer is pushing forward.”
“Tell me what’s happening.”
“Everything is getting harder. Getting from my perch to the BR is more of an effort. Making it through a sponge bath takes so much out of me. I have to break the process down into little bits and rest in between. The exertion causes heavy breathing and it takes some time before everything regulates itself. And then there’s the spinal weakening. I don’t know anything for certain, but I feel like I’m behind the eight-ball on that process.”
Silence.
“Sunday marks my sixth month. I think I might get another month.”
Nurse M leaned in — all-in — and said, “You know your body and your assessments are the most important ones. You’ve identified obvious signs that things are happening — changing. That’s part of the story, but let’s look at a few other things. Your vitals are strong. Your voice is strong. You are still eating and drinking and sleeping and managing your day to day personal care and you’re still blogging and your pain is being managed. Those are also parts of the story.”
“And those are the things that you watch?”
“Yes.”
“And when those things start to change, we’ll have more of the story?”
“Yes.”
Silence. Lots of silence.
“I think we need to have The Talk. I think I need to make some plans about where I’m going to die.”
When I began writing that blog, my goal was to see May 8th — Mother’s Day. I was quite certain I would meet that goal and live beyond that goal — although something was nudging me — a feeling that things were moving in an ominous direction. Not a bad assumption given the state of things, but after some reflection by Jessie things have changed a bit.
“I don’t think your feelings of decline were about cancer. I think you pulled a few twisted threads.”
Have to say I LOVE that Jessica spoke my lingo!
Twisted Threads — this writer’s dream.
I wrote blog 68 on a Thursday. That’s the day I had a really bad headache and a sore throat. I chalked up those symptoms to side effects of a new medication I’m on and didn’t consider Covid might have been the culprit. I tested positive for the menace two days later. Jessie thinks the slip-sliding-away sensation I was having was about Covid and not about cancer. She thinks my body knew I had the illness and sent out warnings — I decided they were a premonition about my cancer.
I am all-in on Jessie’s bit of positive thinking. Not only because it’s a reset on my mindset, but because I AM FEELING GREAT. Paxlovid kicked Covid’s ass and as soon as the yucky lingering cough and fatigue moved on, I went back to living with cancer. I no longer feel as though I am dying from the disease. Not now, anyway.
Awesome!
But that doesn’t dismiss the times I get the doldrums.
Shhhhh.
What would I do — if I could do anything?
That question comes around and around, almost in a Truth or Dare sort of way. I’m going to be realistic with my list. I’m not going to include things that I haven’t done in decades, like horseback riding which I did for many, many years and would do in a heartbeat if things were different. They aren’t. So this is a realistic list of my wanna-dos.
Wells Beach. I would love to set our suitcases onto the loveseat and pack them with everything we’d need for a ‘fun in the sun’ week at the beach. I would love to wake up on the morning of our drive, point to this and that for Tim to schlepp to the car, do a once over fire check of the homestead, grab my ‘beach only’ sunglasses, park my ass in the RAV, put on our ‘going to the beach’ playlist, open my window, and smile, smile, smile for the next two hours. I would love to hear the clap of my hands when we passed the marshes on Mile Road and declared the state of the tide, “It’s high!” or “It’s low!” I would love to hear my squeal of delight when we first saw the Atlantic doing its thing. I would love to haphazardly dump our belongings into ‘our room’ — the one we’ve stayed in for almost every one of our 35 July trips since we honeymooned in Wells. I would love to feel the grit of sand on the bottom of my bare feet. I would love to breathe in the smells, and soak in the sun, and dreamily stare at the rise and fall, the push and pull, the crash and recede of the ocean — my ocean.
My garden. I would love to dig a bit in the soil, then sit on the front stoop and direct Tim as he carried pots of annuals to this section of garden — or to that section — or to the garden out back. I would love to sit at our wrought iron set on the deck and admire Tim’s plantings, and speculate when our perennials would be in full bloom, and maybe enjoy a lemonade or a meal.
My kitchen. I would love to build a lasagna, and make chicken parmesan, and crockpot stew, and That Chicken; a recipe I created. Of course I’d be eating the meal alone because The Curse of the Vegan is upon us. I wouldn’t complain — I so would complain. I would love to bake an apple pie, and a cheesecake, and cupcakes with Hadley.
My upstairs. I would love to take a very long shower in my spa-like bathroom. I would like to stand at the window that overlooks my backyard and look further beyond into a nice swath of woods where deer, and foxes, and bunnies, and turkeys, and hawks congregate. I would love to sit in my writing room — just sit there — and see what stories bubble to the surface. I would like to take a nap on ‘our bed’. I would love to sit in Tim’s office watching him do whatever it is he does on two mammoth computer screens. I would love to count the stairs as I descended them.
My living room. I would love to visit it — just visit it. I would love to fill it with family and friends, sans Covid masks so I could just look at their faces. I would love to spend a quiet evening by the fireplace making plans for the future with Tim. I would love to dance to Innamorata and Let It Be Me and, and, and.
There’d be nothing wild and crazy on the list of things I’d love to do — only wonderful somethings. Sadly, I won’t be doing any of them. Sadly, they have been stripped from my life. Ooops, that sounds like a complaint.
Shhhhh, don’t tell anyone I’m complaining.