Human Being versus Human Doing

A couple Junes ago, a friend called me with trepidation.  I had not sent my usual Christmas greetings in December, and with my diagnosis, she said, “I was afraid you had died.”  Not so, but taking a season away from cards when I felt uninspired made sense to me…well, I just don’t do things anymore unless I want to or feel a compulsion I choose to follow. 

Starting this blog with a bang and some dedication, my period of silence does not mean I am gone or not well enough to continue.  Time away has given me space to reflect and ponder. Instead of coming from deep within me and escaping my heart and soul, I know that bitching about cancer tends to burrow down and niggle at me.  I don’t need that.

Yesterday in the sermon I heard a quick and casual remark about human beings versus human doings.

I was convicted.  I, who thrive on lists and crossing out jobs done, who subconsciously rate a day as good if I accomplished a lot, and berate myself that I wasted time if not much is done…I am my father’s daughter, wired to be task-oriented.

So I do fill my days and my weeks with tutoring third grade groups, completing financial secretary responsibilities for church, volunteering as a tax aide during income tax season, signing up my husband and me for dance classes…you don’t need my whole agenda, other than to understand that a day free without any commitments is a pleasure.  Because then I finally have a chunk of time to get things done!

 Cancer certainly exacerbates these tendencies of mine.  My bucket list, my “take care of my family” list, my unfinished business list, my closet full of my fabric stash all drive me to do do do. 

When will I be be be…like a human being?

I don’t have more energy than most…contrarily, I should have less pep with my drug regime.  I just don’t feel I can waste the time I have doing nothing.

So next week (because I am too busy this week, you see?) I am going to be intentional in my “being time.”  Longer spells watching the hummingbirds, more walks just stretch my legs and my thinking, indulging in a book when there are other things to do, eating a meal without my computer engaged in some business. 

 This deliberate time to be may take me away from the blog for a while again.  I’ll let you know how it goes.

Too Late for a Different Assignment?

This morning, after my husband left, wracking sobs came pouring out from deep inside my being and it took a long time for them to subside.  What trigger?  Those little moments that randomize in dreams, a concerned look from my infusion nurse yesterday, chemo coursing through my brain and playing havoc with my emotions…I really don’t know.  Seemed like a poor start to a day.

But…then I did banking, took and passed my AARP tax preparer test that I have been prepping for and avoiding avoiding avoiding, in spite being perverse (word of my day) enough to enjoy tests, finished a quilt that was to be my first when I purchased the fabric in August 2002, and cut out fabric from an actual pattern to make a top that is my first in years since my quilting and curtain forays. Took a lazy Januagray stroll on the beach, absorbing the surf sounds and low tide smells and slate-like colors, watching the sun try to penetrate the clouds on its winter path through the sky.  Picked warm roasted chicken right off he carcass and slurped it down, mmmm.  Invited folks to breakfast later this week  which is now my favorite entertainment meal, nice china, perking coffee (which I don’t drink but inhale deeply), linen tablecloth and napkins, silver flatware…yes, it is a real pleasure. Those sobs seem far away this evening.

On this 20+ year cancer journey, whether in my early days when a cure seemed probable, in the middle years when I fought with the worst chemicals ever and clung to hope, and now trying to keep cancer quiet but no longer fighting for a cure but hanging on, struggling for another year while hoping to make a difference in my days.

People on the outside looking in have often asked me how I keep positive, how I stay strong, how I cope.  They did not see me sobbing this morning, but were there when I did some charity volunteering or taught through my chemos or smiled because the sunshine felt so good or I was surrounded by the beauty of creation or the beauty of the created in my life, my children.  I don’t know how I would ever do this journey without my faith in God, without the presence of warm hugs from my Lord, without angels at the corners of my bed, without prayers in my veins.  After talking with a co-worker years ago who wanted to know how I was doing what I was doing with such good spirit, it seemed to me that my cancer was becoming my life’s witness.

Which, honestly, made me want to go up to God and say, “Hey, can you give me another assignment, please?  Can’t I be a witness without cancer?  I’d love to do the Peace Corps or something else.”  I am not saying God gave me cancer as a way to witness to my faith, but all things work to good in my life.  I’ll try.

I like to be irritable about my cancer sometimes.  I like to mourn the graduations, the weddings, the baptisms, those important events in the lives of those I love.  Maybe it’s the little things, like walks in the woods, picnics in the mountains, snuggles on the couch, and silly games together (that I want to win because I am competitive) that I will miss, although when I am gone I can’t really miss them, but I can rue the fact that these special times are finite. I like to be philosophical and consider all the positive things that cancer has forged in my character and my understanding.

Before my dad died of cancer, he would tell my mother how much he would miss her when he was gone.  Which wasn’t logical, of course, but was so True.

Fomenting Discontent…or let sleeping dogs sleep!

Just a very short-timer blogger I am.  Once the idea  to blog about stage four life percolated for a while, I believed that having a somewhat anonymous place to air the raw-side of my emotions and fears and rants about stage four cancer would be therapeutic. When talking with friends and family (and sometimes total strangers), it is a blend of candid speaking and tip-toe-ing as I select the words to share what’s going on health-wise and emotionally with me. While my cancer seems to doze, my feelings are not always so inclined.

Now I am not so sure that dredging up, examining, and exploring my feelings is good.  Or therapeutic. I am not known for suppressing my emotions (ask my husband about my outbursts), but this feels a little like making rootbeer. (A family tradition going back to the 1930’s, but I digress) Water, sugar, rootbeer extract, and then some yeast to get fermentation going and a warm place to let those yeast fester out of control. After I write a blog, like my holiday meltdown, it ferments in my brain for a long time, growing like yeast and bubbling out of control like root beer until something that I could have dismissed as silly or insignificant has taken on a life of its own.

When I was little (well, let’s say pre-adolescent) and was upset about something in our family or my parents’ decisions, etc, I found it easiest to write them a letter about the gross injustice or wrong I had suffered at their hands, totally my perception.  I was usually quite emotional as I wrote, and I wish I had one of those letters because I think it would be hilarious to read today.  Most, but not all, of those letters were delivered.  Most, but not all, were treated with respect.  I learned to think of writing as a way to process and resolve problems and issues.  I still do.

I want my stage four struggles to be processed, to be aired, but then let go.  To nap undisturbed a little longer, to settle quietly as an issue no longer worth time to fuss about, to be quiet like my cancer, blessedly, is now.  And let me simply live.

Holiday Meltdown

By now I know that holidays have lost something since my stage four diagnosis…perhaps their lighthearted joy, their revelry in family togetherness, the quiet times shared with others just don’t feel the same for me anymore.  Day to day I manage well, I manage normally, I live fully. I am enjoying my life very much, keep it coming. But the holiday comes and I (notice that I…it is important) create a world of unreasonable expectations, like I want to create perfection for others, I think, but it’s really perfection for me.  I want it to be a perfect holiday for me.

Which I am simply doomed to fail.  So this year’s holiday meltdown should have been expected.

Here is some of my unreasonableness that I can share candidly and you can shake your head at and say no wonder.  Or maybe you’ll understand if you’re walking my walk, because my family tries but really doesn’t get it.

1.  Their Christmas will never be the same after I am gone because who will make all the holiday gifts and bake the cookies that are tradition and adorn the house with decorations I have crafted through the years?  This is a silly one.  They can bake or buy the cookies or treats they want, and this year’s $5 Christmas had some wonderfully-creatively-selected-purchased gifts.  The decorations, just like the kitchen towels that will reside in the bathroom, heavens who can tell the difference, will go anywhere they want to.  It will be different, but it will be Thanksgiving or Christmas or Fourth of July (what, without my homemade marshmallows and graham crackers for smores?) that evolves into new traditions and memories.

2.  I want to fit everything memorable into each holiday to savor and to remember.  That is a recipe for disaster!  Especially when I paint a Norman Rockwell setting where everyone puts together the puzzle, has conversation at the table, creates something together from that year that is special, takes long walks, and plans outings together.  I worked really hard not to be the “camp director” nor “camp kitchen queen” which I assume when no one else seems to be stepping forward.  That’s because their vision of a relaxing holiday and mine are at odds, and I need to  let people simply be and do.  But it drove me crazy, all the time together in silence, everyone plugged into something separate whether it was a book, a game, a phone.  I feel lonelier in the hours of silence surrounded by family than I do when I am in the same room alone.  I really tried, gave it several hours, and then I melted into a puddle.  Pretty pathetic.

3.  A square peg in a round hole.  Cancer does set me apart in my outlook on life, it just does.  I have had more than 20 years on this journey, and this one does not end with a cure and a trip to Disneyland.  It doesn’t end in a bad place either, but as much as I can filter out its implications, I struggle to do so at the holidays.  In the midst of my meltdown, I felt like I was stuck with the wrong family in the wrong place and wrong time.  I felt like I was already gone.

I was chagrined to have dissolved into tears (even though I did it on the beach out of their hearing) and then, since that wasn’t enough, gave my husband an earful later.  Natural, perhaps. But not the way I want to be and want to live. I am thinking maybe redefining the holidays in a less-traditional way so that I am not sucked into this pity party ever again.

Another day…another mistake!

Stereotypically, and perhaps truthfully, stage four-ers know how to appreciate the gift of each day.  Yes, I am blessed to see another sunrise, savor the beauty of the world I live in, treasure special times with loved ones, and fantasize about this Hallmark World I am describing.  While I am able to eek out these moments when I am not emptying the dishwasher, working on the checkbook, or getting up in the dark to trek to chemo, what is closer to the truth is…

The gift of each day is another chance to make another mistake! Screw up!  Goof up but good! Make a mess out of something or other!

Here are a few of the recent ones that are “been there, done that” which should be enough to prevent future stupidness.  But you see, I wouldn’t mind the stupidness again if a promised future comes with it.

1.  Trying to melt frozen hummingbird feeders in the oven at the lowest temperature possible…and still getting plastic bottle meltdowns.

2.  Forgetting that the property tax was due…and not having the funds, so deferring payment on the credit card with its commensurate high interest…and forgetting I have a home equity line of credit with a livable rate.  Forget-squared!

3.  Buying ruffle fabric and expecting to sew it with ease.  Ha!  Those slippery frilly slices of fabric wiggle this way and that as I stitch, and I pull out the threads, and restitch.  Repeat that last line.

4.  On a fabric mode, buying a kit of small little hexagons that need to be hand stitched around a pieces  of cardboard templates (later removed).  Did I mention there are a thousand hexagons?  Sounds like a Goodwill donation.

5.  Speaking of Goodwill, donating items that, doggone it, I find I need desperately the next week.

Not mistakes to shake the earth, turn my world upside down, or alter the course of history.  Most make me laugh, all offer a lesson in learning, and each is a celebration of life that offers two sides to every coin.

I wonder what mistake tomorrow holds?

Breaking Bad Bad Bad

It wasn’t until I was inundated with trailers about the season finale of the show “Breaking Bad” that my interest was piqued.  Not surprising, most series I see a season or two late when I can stream multiple episodes in an evening.  (Not like in junior high, when kids would come to school and talk about last night’s episode of Man from U.N.C.L.E. and if you were one of the unfortunate to have missed it, WELL!)

From the first episode of the first season, I was hooked.  How did a show that was graphically violent about drug dealing (not my normal genre) connect with me?

1.  Walter was a high school chemistry teacher.  Teaching math to ninth graders for several years linked his and my world on a science-math-logical level. I understood Walter’s day job intimately.

2.  Walter was given an advanced stage cancer diagnosis.  Check.

3.  Walter received chemotherapy, lost his hair, was sick from the treatment.  I was a bit surprised drugs like Zofran and such weren’t giving him more relief, but other than that, I walk that path.  (My hair loss was on another journey.)

4.  Anxiety and stress oozed from the scenes, his worry about how his family would not only experience his life through cancer, but even more importantly was his concern about their life without him.  He was driven to do what he perceived was caring for their future…I know I know.

5.  Along the way, Walter lost his moral compass, falling deeper and deeper into a character that gained power over his life through cooking meth.  Self-preservation, which he could’t control for his cancer, meant no-holds-barred for Walter as he established a successful drug business.  Each episode he teetered on the brink of death in the drug world or discovery by his family or the law, and while these situations were tense, I found them hysterical.  Oh no, I would cry, look what he’s doing now?  Walter became a different Walter who manipulated and schemed to be in control.  Out of control body, but an in-control mind.  When I told my family I liked this show, I was asked if I was cooking meth in our shed.  I suppose if I bake bread, make marshmallows from scratch, and brew root beer, meth wouldn’t be too much of a stretch?  Cooking math would be more like it.

Even as Walter became more unlikable and he destroyed his family on so many levels, I still admired the show Breaking Bad.  Here was an advanced stage cancer protagonist who, unlike a sweet angelic character on Hallmark Hall of Fame who fought his/her cancer valiantly, was counter-culture, an anti-hero for those with cancer.  Break the mold, Walter. Empower me.

Just last week I finished the series, and it didn’t disappoint.

Last Christmas

Last Christmas

Grandmother spent her last Christmas reclining on the couch, wrapped in a flowered robe that I remember as yellow with rose-colored posies.  It covered her colostomy bag and long limbs withering from cancer, but her seven grandchildren sitting on the floor were too young to know that Santa Claus was not real or grandmothers died.  Our eyes, reflecting the colored tree lights, sparkled in anticipation of opening the presents stacked beneath the tree. While our parents and grandparents spoke with each other in hushed tones, we gleefully squealed, tearing ribbon and wrapping from trucks and blocks and dolls.  Our Christmas memories of welcoming Baby Jesus and holiday gifts were untouched that year by the adult-only drama unfolding as we gathered.  Grandmother’s children, our mommies and daddies, our aunts and uncles, were saying goodbye.

Earlier that October, Mother, my sister Susan and I had moved temporarily into upstairs bedrooms at the Chaplain’s parsonage in Portland where my grandparents lived.  It was across the street from Emanuel Hospital and next door to the nursing school my mother had attended.  My brother Gary was living there already. While no one is alive who can tell me the full story, I believe Gary’s mental retardation and hyperactivity were too much for my mother to handle with three preschool children. The grandmother who I would learn to know and love through family stories was a dynamic, “can-do” woman.  I am sure she believed she could and would make a difference in my brother’s life and insisted Gary come live with her. She channeled Gary’s energy to jumping mattresses in the basement, painting easels, and a small bike with training wheels. Mike, the boxer dog, kept an eye on him, although I’ve heard how Gary climbed out the window and ran to the cars parked along street on the corner lot.  Imagine the drivers’ annoyance to return from visiting patients in the hospital and find their windshield wipers pulled out by their roots.

While my father continued to work in Seattle, our family settled into life with Grandmother and Grandfather.   Grandfather shaved every morning in the bathroom at the bottom of the stairs, Grandmother ate breakfast of Ruskets and toast with us in the large airy kitchen, and Susan napped while I learned about colors and numbers and being the only non-black child in a kindergarten class.  Some mornings Mother asked me to “babysit” Grandmother while she ran errands.  I would entertain Grandmother by belting out songs or cutting out my Oklahoma paper dolls for us to play together.  During our stay, Grandmother was hospitalized for what I presume was surgery or treatment.  Little children were not permitted to visit, but my mother had done her nurse’s training at Emanuel Hospital and was privy to secret routes up back stairs.  Lying in her hospital bed, Grandmother was not as robust as I knew her to be, but she smiled and held my hand as we visited.

These memory snippets of a child less than six years old, fleshed out by family anecdotes, became richer when woven with my own life experiences.  When I was in college, I learned that Grandmother graduated with a double major in math and art.  My sister was artistically talented and I became a mathematician.  When I fingered wool plaids in the fabric store and pored over patterns, I felt connected to my grandmother who was known personally by all her neighborhood fabric purveyors as an excellent seamstress with impeccable taste.   I never achieved such skills, but I like to think of her as I sew.  I once overheard my dad share with his sister Helen how much I reminded him of their mother.  It was a compliment that I cherished.

I wish Grandmother was coming to spend Christmas with me this year. I would match her stride for stride as we walked the beach. We could bake Swedish cookies and sew gifts together.  I’d like to make coffee for her just the way she likes it, and wrap up all her shared stories and dreams to store in special places in my heart.  Grandmother and I might even talk about our cancer journeys, because knowing how to die is part of knowing how to live.  Spending the holidays with Grandmother would be so very special.

Now I often wonder what gifts Grandma received her last Christmas so many years ago.  I like to think that surrounded by the children she had taught and inspired, loved and corrected, reminded her of her life’s work and that the grandchildren at her feet promised her the legacy of her future.  Merry Christmas, Grandmother.

Victoria Swanbeck Randolph

April, 1895 – February, 1958

Chemo Brain Fry

When I attended a recent seminar on cancer, one breakout session discussed the effects of chemo brain…that fuzzy, in-the-cloud, what-was-I-saying-doing-thinking state that is a side effect of chemo drugs during treatment, and here is the bad news, linger for weeks, months, years!  Needless to say, I found it disconcerting to discover that I have been in chemo-brain land for over TWENTY years now, ⅓ of my life.  Endocrine therapies and chemo drugs all mess with the gray matter..maybe blessedly  so that I am rather oblivious to my impaired functioning.  Except when I can’t recall a name, find my glasses, or put my hands on that bill that is due in a few days!

I started to think about all that I might have accomplished if chemo hadn’t shaked and baked my neurons.  Here’s a partial list (because I’ve forgotten the rest.)

1. Competed as a champion on Jeopardy, harnessing the useless information and facts that have filled my brain for years and are now all hopelessly irretrievable.  Except the capital of Kansas is Topeka.
2. Raised perfect children, and while they are nearly so, a perfectly functioning mother would have said the right words at the right time…or more likely, known when to not speak at all.
3. Because I would be impeccably organized, veggie seeds would be planted at the optimal time, I would take advantage of sales to stock up on socks that would always be paired, my financial records would reside in alphabetical and dated files, and all the time saved looking for things would be channeled toward tatting my own lace.  Or something obscurely creative.
4. Like writing the great American novel, some opus magnus or magnus opus.  I love words, but they are not cooperative in coming together in a way that earns me any recognition or money.
5. As a retired math teacher, I would develop a new algebra based on premise that one CAN divide by zero.  I mean, Pappus of Alexandria (and others) eliminated parallel lines (all lines meet at infinity) and developed projective geometry.  The number i  was created to represent the non-existent square root of negative 1, leading to complex numbers, so why couldn’t I revolutionize algebra by creating a representation of division by zero?  Oh, I could have, had chemo brain not intervened.

The “what might have beens” really don’t matter, do they?  Like Stuart, wherever he comes from, I get pleasure from,”Look what I can do!” in spite of chemo brain. Yes. Yes. Yes.

Sigh…the holidays.

I love the smell of roasting turkey, the last minute frenetic mashing-graving-roll baking-slicing-serving of the dinner on the china we had as children for special occasions just like these.  Usually by the time dinner is served I have little appetite because I have inhaled the aromas all day which activate appetite suppressants until it is time to pick the turkey.  Then, chemo or no,  I am hungry.

It is easy to close my eyes and smell, hear, see, taste, and immerse myself in these reminiscences which have enough in common with each other to create a treasured, albeit a bit generic, holiday memory.

Just about now, as the count down begins, a niggling thought creeps in to add a new twist to my Thanksgiving and Christmas spirit.  What if this is your last Thanksgiving, the final Christmas spent with your family? Yes, anyone could think that, not just someone with advanced-stage-any-disease.  And as  I don’t have a so-many-weeks-months-years-to-live prognosis, no projection, there are no Las Vegas style odds for me to answer the what if?  As I come to the table to say grace, to serve pumpkin pie, to hunker around the Christmas tree, to sort the edge pieces of the annual Christmas puzzle, I find the question swirling around in my brain and my eyes surveying the scene, my loved ones, with a certain wistfulness.

So, I wonder how many of you in this same boat ever feel tempted to scream, “Hey, serve me the stuffing first.  This could be my last Thanksgiving!” or rant, “What a stupid Christmas gift!  Why would I want something like that for my last Christmas?” or  “You’re not coming home this year? Don’t you know this might be my last?”  Oh, spread the guilt, the worry, the anxiety as thick as butter on homemade bread.

Of course I would never say those things…even if they do dare to cross my mind.

The gift of each day is wasted if I worry and wonder on the darker side of cancer.  So today I enjoy the chocolate chip cookies baking in the oven, stitching shapes together for quilted table runners, writing a holiday letter to send electronically (if I don’t, then people are afraid to call me up in case I died and didn’t tell them, hee hee), and enjoying the winter hummingbirds visit the feeder.  And paying bills, doing laundry, and cleaning out the fridge.  I’ll do the same on Thanksgiving, on Christmas, and enjoy the moment. Because that’s what I have.

Xelodians of the Universe…to battle!

It is not a stretch to say that chemotherapy just might make one a bit alien…in appearance, behavior, and outlook on this earthly planet.  On one chemo regime, taxotere, the steroids to counteract the side effects was dubbed “Dr. Jekyll/Mrs. Hyde juice” for its impact on my social niceties that ceased to exist.  Out of this world, out of control, definitely an alien mother, alien wife.

I ramble.  Xelodians, those who have in the past or are taking Xeloda for their cancer fight, this missive is for you.  You have my heart-felt wishes for symptom free reactions, especially, oh please, especially no hand-foot syndrome.  I stare at my red, peeling feet (not to be confused with appealing feet) that burn in the night, itch from friction, say “ah” when iced, and have put a few limitations on things that I like to do.  Like hiking in the Olympic Mountains.  Or taking long beach walks.  Or bike riding on trails (I am not very road savvy with my bike).

What’s so insidious is that the chemo weakening my immune system, then bag-balming my tender feet and encasing them in thick socks, has sneakily and surreptiously combined the hand-foot syndrome with moccasin athlete’s foot to create a one-two punch.   So, after talking with my oncologist last week, my husband and I have declared WAR on my feet.  Fighting with vinegar soaks, Lamisil, fresh socks, sprayed shoes, and (not soaking in bleach because that stuff is scary) anything else we can try to get those puppies under control.

I am open to your suggestions, fellow Xelodians.  May we walk on!