Tuesday, June 23, 2015

98.6 and Other Myths

According to weather forecasters, Utah is entering into a period of extreme summer heat. It's supposed to get into three digits by the weekend. I personally wouldn't know the difference because I am always cold. A sluggish thyroid is to blame, but so is cancer.

On chemo day, once the implanted port has been accessed and the infusions begin, I start feeling cold immediately. One of the best things about the treatment center is the heated unit full of blankets. Fortunately the "minions" who accompany me have learned by now that the way the blankets are folded in the heater is lengthwise, making them perfect to cover people six feet tall and 130 pounds... which I am not. Once I get settled into the reclining lounger, my people choose the heavier blankets, rather than the tissue-thin flannel sheets and refold them the other direction so they're wide enough to cover me. They tuck the blankets under my feet and all the way up behind my shoulders. It really helps counteract that cold liquid being infused into my body. I used to bring a book to read, but now I opt for the music stored on my phone. Something serene happens then when I'm warm and listening to my music.

In all my adult life, if my temperature has been 98.6 (normal for everybody else) it's an indication that I'm sick. A couple of times in the past four months of chemotherapy treatment my temperature has gone up to 98.0 and 98.4, but never 98.6. For a day or two after the chemo, I also experience a face flush, making my cheeks feel warm and look pink and healthy, but my temperature never goes up.

Side effects include neuropathy in hands and feet--tingling sensations, sort of like what my nephew once described as "7Up in your fingers." Many of my fingernails have what looks like bruises, but it's blood pooling in the nail beds, making them tender to the touch. I'm grateful that I can still type. Neuropathy in the feet is another issue. My feet feel like blocks of ice, and my poor little piggie toes suffer the sensation of drawing cold out of the floor. Wherever I sit, I try to keep my feet bundled up. Visitors think I'm nuts because they are all sweating and suffering from the heat.

Dressing all bundled up when I go to church makes me look funny, I'm sure--I've been wearing hats for three months to cover my not-quite-bald head, in addition to all those layers of clothes and sweaters. Sometimes I even have to use my "church blankie" to counter the effects of the powerful air conditioning in the building.

Hubby works in the yard early in the morning to avoid the heat of the day, and when he comes back in the house, he turns on the air conditioner and a fan that blows cold air directly on him. If I'm in the same room, I add to my three or four layers of clothing a sweater or jacket, and a couple of quilts. I'm now trying to train him to turn off the fan and the AC when he leaves the house but I haven't succeeded yet in doing that.

When we leave the house together, no matter the temperature outside, I'm always wearing a sweater or jacket. In fact, when we go out on errands, I often sit in the car enjoying the heat when we've finished the major tasks, while hubby runs into another store to pick up the prescriptions or whatever. It's how we roll. It's a good thing we have dual temperature controls in our car. Hubby's is set at 68, and mine is at 75, and I'm usually still shivering. I keep a blanket in there to shield me from the cold blasts of air coming from his side of the car.

We are headed for Oregon in a couple of weeks--all of our family except our missionary in New England--and I am looking forward to a few cool days at the coast, walking in the sand, eating ice cream in Tillamook, watching colorful kites fly, petting anemones in the aquarium, and sitting on the deck till the sun goes down. Apparently weather forecasters say there's going to be a heat wave in Portland that weekend when we go to an extended family dinner party. I won't mind.





Saturday, June 6, 2015

Hair Today, Not So Much Tomorrow

Twelve chemotherapy treatments have left me nearly but not quite hairless. It's a distinguishing side effect because the chemo attacks fast-growing cells, i.e. cancer, and hair follicles. Several friends have made hats for me, which I really appreciate because my head, though not totally bald, gets very cold. I used to take a lot of pride in having my hair done every week and feeling confident in how I looked. Now I settle for cute hats. In the same spirit as last week, when I reprinted an old essay, I'm reprinting the history of my hair--sort of a retrospective, sort of nostalgic, sort of hopeful.

Hair, Not the Musical

2005

         I have old hair. In fact, my hair got old before I did.
       Some people have bad hair days, but I’ve had a bad hair life. I was born with fine, limp, straight, plain brown hair, with a cowlick in the front. [Well, it was blonde for the first few years of my life, but that didn’t last long.] It grows fast and will not be ignored. It has always dictated to me what it wanted to do. In pristine western Oregon where I was raised, in the days before portable hair dryers, you didn’t give a lot of thought to your hair. The water was naturally soft runoff from Mt. Hood, and the climate was temperate. Whenever I washed my hair, I would comb it in place, maybe put a few curlers on the ends, and either sit by an open window to let the sun and breeze dry it, or in front of the roaring fireplace. When my hair was dry, I brushed it, and that was that—not a lot of fuss.
         When I got into high school curls were more socially important, and the fuss quotient increased. I knew by then that I was fighting nature. Through high school I usually wore it collar length, no bangs, often in a French twist or a ponytail. My sister, who has naturally curly hair, wore hers short, did it up in pin curls, and had what was then described as a tossed salad hairdo, right in style. I was so jealous.
         Until I went away to school in Utah, I had never used hand lotion or hair conditioner. The water is hard and the climate is dry in Utah, and I didn’t know what to do. The first time I washed my hair and didn’t use conditioner, I looked like someone who had never fixed her own hair before. It was embarrassing, and I still have the yearbook picture to prove it. Editors used your student ID picture for the yearbook in those days, for freshmen anyway. Lacking the natural drying elements I used at home—sun and fire—I got one of those portable hair dryers with a plastic cap that fit over my curlers so I didn’t have to go out in the cold with wet hair.
         During college I experimented a lot with hairdos. Some were pretty extreme, and observers might have assumed I was a rebel, but the truth was, I was just trying to make peace with my hair.
         Over the years I have not managed my hair as much as it has managed me; sometimes all I could do was give in to its whims. I tried coloring it a few times when I was in my early 20’s, but that turned out to be a treadmill I didn’t want to stay on.
          When we lived on Guam, the tropical climate and the Hair With A Mind of Its Own conspired together to undo me again. This time, curl was impossible because of the damp air. I had collar length hair when I arrive, and when I washed it the next morning, there was a power outage that took out my portable hair dryer. The following week I went to a salon where my hair was coifed and sprayed within an inch of its life. “That’ll show you,” I thought as I inspected the finished product. I strode triumphantly out into the weather again looking fabulous, for about ten minutes. Again the hair had the last laugh. By the time I got home about 20 minutes later it was a sticky, back-combed, shapeless mess. Not long after that, I surrendered to a very short wash-and-wear hairdo known in those days as a pixie cut. I have worn it fairly short ever since, though not always that boyishly short.
         To maintain some semblance of order, I have to get my hair cut every six or seven weeks. It laughs demonically at curling irons, so permanents have been my only hope for an alternative to that look you see in cartoons when someone has touched a live electrical wire. With a perm every three months to give me a little height, and some softness around my angular face, things have gone along pretty well for quite a few years.
         After my children were born, when I was in my late 20’s and mid-30’s, my hair turned a much darker shade of brown. Shortly after my son was born it began to turn gray, which has nothing to do with the fact that he was a boy and also my last child and I wasn’t that far from 40. Actually, my hair has a kind of mink effect, with gray ends and dark roots. People think it costs me a lot of money to keep that up, but I just smile when they suggest such a thing. I’m way too lazy for that.
         At that rate, my hair was almost completely gray by the time I was 60, and is well on its way to white. White hair is beautiful, as is gray, but it is also curl-resistant, no matter what my hairdresser has tried. For a while I surrendered and let my hair do what it wants. I let it grow and pinned it up on top of my head, like a matronly silver halo hovering over me, suggesting to my grandchildren something otherworldly and mysterious. That didn’t last long, and I fear I am doomed to an old age hairstyle that could easily make me a George Washington look-alike.

         Now I am giving some consideration to hats.

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.

Wednesday, April 29, 2015

Having a Swell Time

Chemo treatment #8 went very well, although once I sleep off the Benedryl, the steroids kick in and I'm wide awake most of the night. We have a lot of good markers to be grateful for this week. Even the cellulitis is improving tremendously, but now the dreaded swelling and water retention are taking a turn. In spite of that I did lose a couple of pounds--inexplicable how that happens with all that water filling up my cells. Now I'm on Lasix to draw the water out. Its generic name is Furosemide, and its effects can be furious if you aren't close to a bathroom when the call comes. Not much swelling has gone down, but this is only day one.

A very nice side effect today is that I'm walking around the house very successfully without the walker that has been my constant companion since November--I've referred to it as "going steady." This past week I've had pain in my right leg, mirroring what was in my left leg before, but today it's gone. I haven't tried to leave the house and stroll through a grocery store or other public place (saving that for Friday--Sprouts has some deals on berries) but I'm liking the positive signs.

Monday we went to an accessories store (who knew they had those?!) and got some clip-on flowers and bows to frill up and soften the look of my hats (I have 12 now--hubby refers to me as Bartholomew Cubbins) and it seems to have worked. Hats soften the blow for onlookers, but I really need them to keep my head warm.

Utah Boy and Sweet Nurse are probably going to be moved to Utah Valley by May 11. They've leased their home with an option for purchase and have to vacate by then. So grateful for that. They looked at a rental home in our neighborhood last night and we're hoping it works out. He's having interviews and she has started her new job. Seeing Grandbaby C more often is a good thing. She's getting used to me, funny hats and all, and now I'm even getting smiles and kisses. She likes my house because I have lots of BOOKS and a chair that's just her size, so she's starting to warm up. Nice.

We are making plans for our vacation at the Oregon coast in July. It's going to be fabulous. Started the ball rolling to set up a book signing event while I'm there--hope it works out.

A few days ago I heard from a high school classmate who has been following my blog because she's just been through this same experience. It was great to read her email and get that encouragement. My friend Mindy and her home-schooled daughter Zion, whom I've been tutoring in writing for a couple of years, came by on Sunday with a basket full of berries and a "hug monster" they made for me. So many people showering me with love and kindness! Such a blessing! I can actually feel the prayers and positive vibes coming my way.

Sweet moment from chemo day: looking out the treatment room window and seeing the mini tulip festival in the flower beds by the front door of the hospital. Spring in Utah drops these little kindnesses on us, too, and we breathe deep sighs of appreciation.


Saturday, April 18, 2015

Silence of the Blog

It's been a while since I've posted, but not because I haven't thought about it. Mainly I'm a gifted procrastinator, and not posting is a manifestation of that gift.

Speed. That's what I've been thinking about lately. Pouring molasses in January. Swimming through a vat of Jell-O. Wading knee-deep in applesauce. Striding through a puddle of ketchup. All of that is how I feel when I wake up in the middle of the night and can't go back to sleep, even when I want to. I visit the bathroom first, automatically, sitting and staring, thinking I ought to get up and be finished now, ought to make myself move, ought not to sit there until my legs go to sleep. I think about the things I ought to be doing. But it's so easy just to keep sitting there. Eventually I talk myself into standing, pulling my pants up, washing my hands, and going on with my life. Sometimes it takes a lot of convincing because speed is highly overrated.

How do you pass the time at 2 a.m. when you'd rather be asleep? I have developed a few strategies for wearing myself out so I can go back to sleep. I go online and catch up on the news. I write emails. I index--New York marriage records are my current favorites. (Found a great name this morning--Fairybelle Hooker. Who names their kid that?) I work on a manuscript if my brain is functioning well enough. I try to clean off my desk, an impossible task since I'm creatively sloppy by nature.

This week I didn't have a chemotherapy treatment, but I did consult with the doctor. He's very personable and isn't afraid to get off topic for a few minutes because life events influence health events. We're undergoing a transition in the family with Utah Boy and his Sweet Nurse wife moving to Utah Valley, and she works in a hospital where my doctor might interact with her sometimes.

So far the treatment seems to be working. My left leg is pain free, and I walked into the doctor's office with the assistance of a cane. That's the first time since November I haven't used a walker to get around. Our plan right now is to reassess progress after the next set of three treatments. That means the second week of May I'll have another test--either PET scan or MRI probably--and be free of chemo side effects while Colorado Girl is visiting again for a few days. We'll have a birthday party for Utah Boy that week as well.

Sweet Nurse performed an act of mercy by trimming my toenails this week, and then she buzzed what's left of my hair. Doctor is surprised I haven't lost it all by now. Without a hat, I now look like the denizen of a concentration camp. Maybe I'm not going to be bald. That sometimes happens.

We started doing a TV exercise program called Sit and Be Fit, which is designed for seniors. I actually feel energized by it, but Hubby pulled a hamstring the second time out. Activity is good. It keeps the juices flowing. I've been having mini-massages, too, and that also helps. I can sit in a chair and the therapist can still do her thing.

Antibiotics are slowing down somewhat the cellulitis on my legs. It wasn't as bad this time when I went to get the wraps removed and replaced. We'll see how long that lasts. Those wraps are tight enough to act as the needed compression for the swelling and water retention that I'm now experiencing. In other news, my dermatologist and his assistant, who have been treating the cellulitis since January, both bought copies of both my books to give to their wives for Mothers Day.

And the second book, What Took You So Long, is being advertised in the Deseret Book spring catalog. So get it, read it, and put a review on Amazon, GoodReads, or Deseret Book.

Bottom line: six treatments down, six to go, feeling as well as can be expected. Life is good.