Tuesday, May 26, 2015

Tired of Being Tired

Anticipating the conclusion of the present round of chemotherapy in the next two weeks, I imagine myself able to make a To Do list and follow it through to completion. Looking back on the undone tasks now safely tucked into my list of accomplishments is part of my hoped-for return to normalcy.

Fatigue is one of the side effects of chemotherapy, and it has really hit me hard this week. I'm ambitious to plan menus and shop and cook and keep a household running, but I often get into the middle of a task and suddenly feel an overwhelming sense of exhaustion. Then I have to call for rescue. I want to be productive, but sometimes the best I can do is read or converse. Consequently, on some days I simply putter. It reminded me of an essay I wrote some time ago that explores my inclination to fool around and waste time doing things others might find unproductive. For your blog enjoyment, here's a reprint:

A Fine Pestilence

By Pam Williams (2005; revised 2009)

            Winter is the best time to be a putterbutt.
            This is a word I learned from my friend Elaine, and as a serious lover of useful made-up words, I installed it in my vocabulary immediately. It means to just fool around and sort of flirt insincerely with your To Do list, that primary source of proof that you are an adult and can be trusted with Serious Responsibilities. Putterbutting is my form of Attention Deficit Disorder, a diversionary tactic to avoid tackling a task I don’t really want to do. Somehow, when I’m trapped by winter’s tricks, there’s more opportunity, knowing the task has to be done eventually, to put my trust in eventuality and allow my attention to wander shamelessly, aimlessly, toward anything, everything else. That’s putterbutting.
Being a putterbutt helps me keep a positive attitude under gray skies and in white storms. Having been born in Oregon, and raised on nuts and berries like a bear, I have an inclination to hibernate in the winter. Sleep is a putterbutt’s hobby. For that reason, I have never found winter depressing and endless--boring maybe with its frigid sameness--but I believe spring will ultimately win. The tutoring message of winter is introspection, reflective pondering, putterbutting, while the triumphant message of spring is progress, action, resurrection.
A practiced putterbutt knows the unbridled, guilt-free joy of saying No. With experience, a savvy putterbutt knows not to wear a watch or make appointments that will certainly be sabotaged by motivated forgetting.
A putterbutt has an intimate knowledge of procrastination, which can be justified and rationalized despite an inbred work ethic and overgrown sense of duty. Slow-paced low-metabolism winter days with short daylight hours are perfect for putterbutting. Stuck with mostly indoor activities chokingly dull in any season--things like cleaning out drawers and closets, updating the address book, making an inventory of the food storage--I am desperate for interesting alternatives. Being a putterbutt helps me deny the existence of those chores, firm in my conviction that if ignored long enough, they’ll either disappear or become irrelevant. There are plenty of other days when I can prove I’m worthy of my over-21 privileges.
Putterbutting is a proud occupation for one or two, but it’s too personal to be a group activity. It is conducted by the rules of Whatever, guided only by whim and whimsy, curiosity and quizzical wonder. A dedicated putterbutt can spend hours reading greeting cards in the Hallmark store and never buy one, search through bottomless bins of Kmart clearance items she doesn’t need and won’t buy anyway, wander pointlessly the aisles of thrift stores, all motivated only by Because It’s There.
            For a putterbutt all the world’s a museum, opening life to the wonders of serendipity, the unexpected discovery of delightful surprises, sweet moments that make me smile or possibly even giggle, moments that will contribute to sparkling conversation later in the telling. Things discovered serendipitously are like lovely, intriguing pieces of a jigsaw puzzle that may fit together sometime in the distant future, but until they do, can be appreciated now for their individuality.
            But I digress, and that’s what makes me a champion putterbutt. Wandering from place to place around the house, or the town, noticing details, nuances, subtleties, shades of differences, I ponder, dissect, deconstruct and reconfigure. I take the leash off my imagination. I ramble over unnumbered unscheduled detours to What If and Hmm. I take pleasure in the vistas on the hill above Maybe Some Day, and make mental reservations to return when I can stay longer.
An occasional day spent in putterbutt limbo can be most satisfying. It is “wasted” only if I allow guilt to intrude with its shameful Should Haves and imperative Oughts who come shaking their scolding fingers dangerously near my sense of responsibility. There will always be other days ripe for taking charge like an adult and rampaging headlong through the To Do list, masterfully checking off jobs as if they won’t have to be done over again in another week or two.
            Putterbutting has a cleansing effect, decontaminating the soul from the anxiety that keeps it earthbound on tooth-gritting deadline days. At the end of a long delicious putterbutt day, not much has been checked off the To Do list, but I’ve been everywhere and thought everything and put all the problems in perspective.

If there were some magic elixir that would cure my seasonal bouts of putterbutting, I would tear up the prescription. I look forward to the appearance of this welcome coping mechanism every winter, my capitulation to the animal hibernation instinct. It’s a disorder that doesn’t strike very often, but when it does, I plan to indulge completely. I refuse to be cured of this fine pestilence.

Friday, May 22, 2015

Sleep: Is It Only An Illusion?

Chemotherapy hasn't been nice to my sleep patterns. This week, after the coma-inducing Benedryl wore off, the energizing steroids took over and I was up all night. It's more than annoying. I want to participate with the rest of the world doing the usual morning, noon and night routines, but the drugs won't allow it. So I go to bed at the "usual" time, then wake up three or four hours later ready to get on with the day, which would be fine if the rest of the world were also ready. It's not. So I spend the early hours of the morning checking and answering email, catching up on the news of the day, planning menus and shopping lists, indexing World War II draft records (or marriages in Colorado or wherever), and writing. And then I nap later in the day when I get tired again.

My hubby/hero/caregiver needs seven or eight hours of sleep each night. Normally I can get along with five or six. But not much is normal these days, although I try mightily to make it so. We muddle through.

Normal? What's that? Maybe I should readjust my expectations. Tiredness comes all at once, like a surprise. I'm in the middle of fixing a meal, reading a book, watching Antiques Roadshow, etc. and suddenly I get droopy, as if a two-by-four had been applied to the side of my head, and I find myself unable to continue. Fortunately, nearby daughter or granddaughter can come by and finish the food projects, but the other stuff just has to wait.

Chemo #10 has come and gone. Sweet Nurse daughter-in-law was there with me for a while. She had come directly from the train after her 12-hour shift so she only stayed a short time until I was hooked up for the infusions and then she went home to sleep.

During my chemo respite last week, Colorado Girl came for a few days and we spent time photographing family heirlooms and recording the history of each. I'm grateful that she cares about her family heritage. Her guest room has a display of things she values--grandmothers' teacups and milk glass, grandfather's leather wallet, parents' wedding gifts, etc.--and she has published a guidebook to identify and establish the history of those things that remind her and her children of who they are and where they came from. It was great to have her here. We celebrated all week.

After chemo #11 on May 26 and #12 on June 2, I'll have another scan of some sort to assess where we are, or more specifically, to see where the cancer is, or isn't. Except for the swelling and the topsy-turvy sleep patterns, I'm feeling okay. Lesions are nearly all gone from my left breast, the tumor is much smaller, and the affected glands have softened considerably.

Big event of the week: I was able to go to the book signing at the LDStorymakers conference at the Utah Valley Convention Center downtown, where my books were available at the temporary bookstore. Writers are book junkies, and while sales are nice, the emphasis at that kind of event is on schmoozing. I met someone willing to review my books and talked with writer friends I haven't seen in a while. I saved up my energy for a couple of days, but I found that making the effort to be there was more energizing than steroids.

Wednesday, May 6, 2015

Having a Swell Time

Steroids and antihistamines help to buffer the side effects of chemotherapy, and each time I have a treatment, it begins with the infusion of steroids, Benedryl and Zantac. But there are the side effects of those to deal with too--antihistamines make me groggy and stupid, and steroids make me swell up.

I haven't seen the knuckles in my left hand for two weeks. I'm supposed to be wearing a bracelet that identifies me as the recipient of an implanted port where the chemo infusion goes, but it got so tight I was afraid it would cut off the circulation in my wrist so I took it off.

Due to the medication with Unna Boot wraps on my legs, we're seeing lots of improvement in the cellulitis. Because of the swelling, however, the spots that want to weep will do so if we don't keep the compression steady. It's a strategy that's working well. I'll keep getting the wraps until the chemo is finished in June, and then we'll see what happens next.

Chemo #9 is history now. It was a boring visit with the oncologist because I don't have a lot of stuff to report about side effects. Except for the swelling, and the Lasix hasn't really kicked in, so we're taking it another week to see if it'll start working. In fact, it'll be two weeks before I see the doctor again because next week is a "bye," and with no "game" I'm turning my attention to other things.

I have a dentist appointment next week--no mouth sores, but lots of dry mouth, and that can do bad things to the teeth. Colorado Girl is coming for a few days, so there will be some serious playing to do, and I'm walking around without careening off walls, which means I'll want to get out more and go places I haven't been for a while.

We have been doing "Sit and Be Fit" senior exercises for the last couple of weeks, and it helps to stretch and build stamina. I also have a mini-massage every week that has definite benefits. When the muscles are worked that way, I can feel cellular activity in my breast. And with all this treatment, the scaly skin and lesions have actually diminished. In fact, the tumor is much smaller and the glands are much softer, and the doctor is doubting now that I'll need surgery.

Looking forward to having a pedicure on Saturday night, my first since I was diagnosed. We'll cut the legs wraps off a couple days early and I'll soak and get pampered. Ahhhh.