update

Life is full of strange absurdities, which, strangely enough, do not even need to appear plausible, since they are true.   Luigi Pirandello

I had chemo #3 on Monday, June 27. The actual treatment again went well. As with #2, we found that it is several days later that the effects get more interesting. Still, not nearly as bad as I expected. As is my m.o., I prepared for what I thought was the worst so that I could have the luxury of feeling pleasantly surprised and appropriately grateful that I remain very lucky in my experience. Frankly, not much surprises me anymore as far as side effects. Not sure it could get more weird. Condition du jour: my scalp as a chia pet. Don’t ask.

The fourth round of the dose intensive “AC” chemo drugs will be Monday, July 11, followed again by the two-week recovery period. The last week of July, I will start the weekly infusions of the “T” portion of the chemo schedule, the “AC-T” standard procedure for my cultivar of cancer, called a “triple negative” breast tumor due to its lack of hormone receptivity. I think they could come up with a better name, something a little more peppy and optimistic perhaps, but maybe that’s just me. I will receive 12 weekly “T” treatments, which puts us into October. Don remains a rock through the whole thing.

I will say that I am not able to think straight, not my strong suit anyway. This has been getting progressively more frustrating over the last five weeks. I wish I had written more posts weeks ago when many people gently reminded me that it would be a good idea. Maybe someday I can circle back.

In the meantime, I will try to convey this thought: the daunting shock and awe I initially felt when facing this little detour has evolved into a grateful, overwhelming awe at the continual flow of care, generosity, patience and unconditional love that has poured in from all directions. When I think about all that people have given me, I become a puddle. Not a bad reason to sniffle, in the scope of things. I am very lucky.

And with that, I’ll share one more absurdity of life: as I shed a few grateful tears writing this, I felt sand coming out of my eyes and realized that, for the first time, the skin on half of my face just started rubbing off. I had to say that nothing surprises me anymore…? No worries — kind souls saw my future and have already gifted plenty of lotion.

Love to all.

 

“On the Shores of Michipie”: a post from the past

Revisiting a post in anticipation of upcoming time with my dear cousins. This story originally appeared here in September 2009.

I have never vacationed in Michigan before, other than a wonderful wedding there nine years ago; however that fun, busy event left little time to explore the area.  Growing up in Wisconsin, a vacation in Michigan was never even considered as an option.  It was an absurd concept, like taking a road trip to Mars.  No one I knew ever crossed the Big Lake and went to Michigan for fun.  A funeral maybe, although Michigan people and the Wisconsin people I knew did not usually have familial ties.  So, nope, not even for a funeral.

What is it about neighboring states that creates this virtual wall?  Is it the sibling rivalry of states?  Each place is largely the same but depending on where you live relative to The State Line, you have your allegiances.  It is an arbitrary line on a map, but it spurs fanatical sports rivalries (Packers vs. Vikings), creates the butts of jokes (did ya hear the one about Olie and Swen in Minnesota?), road rage (well, you can just see how they learn to drive in Illinois, can’t ja?”).  It is also the rationale for why their highways are not as well maintained (even though they have tolls!) their women are not as strong, and their children are not as above average, to quote Garrison Keillor, a Minnesotan who knows a lot about such things.

So, back to the story:  off we go to Michigan for a family reunion of sorts, no expectations about the location whatsoever, just looking forward to seeing cousins and in-law cousins and the mini-cousins some of them have begot.  The drive took much longer than expected (but that is another story…), so we I was a bit frazzled by the time we arrived.  It was getting close to  dark when we pulled in to the rental house, so we did not see much scenery or even the lake.  What I did see after all the warm welcome hugs and happy exclamations was… pie.

All kinds of pie.  Pie from Bob’s Barn of Pie.  It is a good thing that I did not go to Bob’s myself, as I suspect I would not have been able to decide.  They extolled the wonders of blueberry lemon, strawberry rhubarb, and many others, but there before us was a beautiful apple pie with an artisan top crust, a triple berry pie oozing with berry goodness, and… an apple jalapeno pie.  Eyebrows shot up, mouths drooped agape — really?   Yes, indeed, She had just baked them fresh today.  She baked them all herself.  No one knew who She was (clearly not Bob) but we reverently referred to She the Pie Maker for the rest of the weekend.  She was good at her job, that much was clear.  She had a calling.

I could not help but notice that the apple jalapeno box was missing a big slice.  Turns out Bob at the Barn of Pie has a favorite flavor and it is apple jalapeno, so he helped himself to a big ol’ slice of the last pie right before they came in, but he insisted that they must try this pie because it was his favorite.  Perhaps he sensed they were from Illinois so he wanted to make a peace gesture and bring an end to this whole state rivalry thing.  A peace pipe of pie.

Either way, we were happy to have our 3/4 of an apple jalapeno crusted wonder, which everyone declared oddly delicious, with almost a chutney-like sweet/hot flavor.  Yum.  Immediately my perception of the whole state of Michigan was elevated considerably.  Any place with Bob’s Barn of Pie that She made fresh in innumerable flavors was a state that needed to be re-evaluated top to bottom.  Time to put aside my preconceived notions about MI and discover why so many of our Ohio friends go there every summer (that was always so mysterious…)

And I will hereby and forthwith call this land Michipie.

The next day brought sunny, seasonably warm weather and a trip to the beach.  The sand was white and soft, the water of Lake Michigan was clear and cold and refreshing.  It was beautiful.  There was that gas generator running loudly there on the sand with a long orange extension cord running to a boom box blaring tunes at 10:00AM, but by then I already had my rose-colored Michipie glasses on and I did not see any drawbacks to this place.  How cute!  Look at the dancing drunk people and the ones passed out on the towel!  They must be visiting from some other state (like Indiana) because people from Michipie are clearly much nicer than that.

Don’t get me wrong — Wisconsin is still my little slice of heaven and always will be.  I’ve learned though to look at my neighboring states in a new light.  Maybe we don’t have to fly to far-away states to have adventures.  Those far-away states have states all around them that make fun of them too.  Maybe, just maybe, I could be a little more open-minded.  I’m just saying.

And, in the end, it was not just the fine crusted pastries that made it the best “end-of-summer” weekend I think I have ever had.  It was the feeling of family, people who call me Janie and I don’t mind, people with whom I can grill brats with a garden trowel…

…but that is a story for another day.

Don’t drink the Kool-Aid

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A quick update: so far, the first round of treatment has gone much better than we expected! I went in for the first chemo infusion on Friday, May 29 with Don at my side, feeding me crackers and cracking jokes and fighting his compulsion to test all the buttons and levers on the cool laz-ee-boy recliner/wheelchair where I was parked. (He only released the brake once.) Even with the recliner brakes secure, the whole experience was a TRIP let me tell you, but not painful at all. Just trippy. We remained calm and frankly quite curious when the nurse donned a full body disposable haz-mat suit to administer one of the meds into the IV, especially since Don was sitting right there and Don did not don a suit and had to sit there unprotected while she slowly injected into the IV what looked like a very thick syrup of possibly Red Dye #40, which we all know from the FDA warnings is quite lethal and therefore you should not drink too much red Kool-Aid because you might get cancer.

That kind of trippy.

Anyway, the post-trip med protocol did a fine job of minimizing most of the anticipated side effects, other than my mouth tasting like a coin purse full of dirty nickels. Small price to pay, really. Every day has ups and downs but mostly ups. We are just riding the coaster and figuring out day by day what help we might need. My three men have been taking great care of me.

Thank you everyone for your support. I am buoyed and blessed each day with the positive thoughts and prayers from those close to me and those I’ve never even met.

Fate, not fatal

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Fate is like a strange, unpopular restaurant filled with odd little waiters who bring you things you never asked for and don’t always like.              Lemony Snicket

Hi, I’m back. Whatcha been doing the last five years? Well, this and that, where do I start? I’ll just say life is good.

Hey, funny thing, I’d been noodling how fun it would be to have something interesting to write about and fate plopped my breast cancer diagnosis into my lap on May 6. Luckily I caught it early (stage II) and the prognosis is excellent. There were many, many tests in the following weeks and I am happy to report that I have been scanned every which way and upside down and there is NO sign of cancer other than the one pesky tumor.

I feel very good and confident in my medical oncology team and am ready to get going. Initially we were told that chemo might start as early as May 13, but some tardy test results (and the insurance company) made sure that the process would progress more slowly. Treatment began on Friday, May 27. So, I was thankful to be able to enjoy the end-of-school activities, volleyball playoff games and graduation before we got started. (By the way, graduation was May 25 but the grad announcements are somehow still on our dining room table… let’s all pretend that if life was normal around here, the envelopes would have been sent on time…)

The fine print: Treatment can include but is not limited to chemo two weeks apart for four cycles, followed by a different chemo drug once a week for 12 weeks. This should cause shrinkage (the good kind) and potentially make the surgery easier. Expecting surgery in early November; Santa will bring me some radiation for Christmas, and we will round the corner into the new year in good health! That is the plan.

I’ll admit, I have felt overwhelmed by the shock and awe of this unexpected detour but also with the outpouring of love from so many directions. Thank you everyone for your positive thoughts and prayers. I feel very lucky

I hath a dream (about hecklers)

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Posted November, 2011.

“30 days hath September…”

I get that far with the old rhyme, then have to stop and think what comes next.  November rhymes with September so it hath 30… right?

Hmmm. A quick online perusal yields a website with 89 versions of the rhyme = not helpful when trying to unscrew a memory aid that I can’t remember!  This is what I can recall: November is NaNo is 50,000 words written in 30 days.  Got it.

November. In 2009 and 2010, November meant NaNoWriMo for me, an exhilarating ride of literary abandon, a seemingly impossible goal of verbal output.  What lovely irony that attempting the impossible is so freeing of fear of failure.  Liberating really, to be forced into writing for speed, which by necessity turns off the Inner Critic.  If the Heckler is on duty, there simply are not enough hours in the day, even if you feed your kids Eggo Waffles for dinner and forgo luxuries like sleeping.

But, alas, no NaNo for me this year, for a variety of reasons.  I have missed the experience off and on all month, but not more acutely than today, November 30th, when I can almost feel the exhilaration of rounding third, banging out 5000 words on the last day before skidding into home, face first, mouth full of dirt, submitting the manuscript by 11:07pm for the midnight deadline and holding my breath until the website confirmed that it indeed caught what I had just birthed as it hurdled through the ether.  (I always get that visual when I hit the send button on my work, which I am guessing would be disturbing for the recipients if they knew.)

In my memory of prior years, NaNo is perfect. It provides the deadline I require for adrenaline driven output. Any arbitrary nature of that deadline is inconsequential when I am in the middle of it.  It feels so good to just write without censorship, not bothered by little details like whether each paragraph actually makes sense.  That is all sorted out later, because in November each day is just words on the page, pushing harder to squeeze them out of some small place inside that I did not even know was full of ideas because I was too busy thinking.  Yes, 2012 NaNo?  I’ll be back.  (Luckily, the pain of NaNo is harder to remember…)

For now, I will embrace one aspect of the November NaNoWriMo experience into December and beyond:  gagging that Heckler.  You know the Heckler — the one that likes to curl up in a lumpy LazyBoy recliner in my mind, drooling with anticipation at each days’ spoils as she chews yesterday’s ideas, dribbling doubt onto every string of alphabet letters I dare to scrabble into sentences.

Yes, that Heckler.

Maybe you have met her brother or sister?

Yep, working my little word magic in peace without the sound of her breathing in the background — that is the dream for the days that come after the 30 days that November hath. Has. Whatever.

nudge, nudge

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Posted 2011.

Sometimes it takes a nudge.  And some good advice.  And an encouraging nod.

And butt-in-chair.

I am beyond thrilled to be mentioned in Jane Friedman’s blog:  Being Human at Electric Speed>>Media Professor + Speaker : 3 Reasons to Have a Website If You’re Unpublished

http://janefriedman.com/2011/11/28/website-for-unpublished/

If I am very still, I can hear it.  A rustling in my soul. 

Knock, knock – it’s the universe calling.  It’s time to open the door again.

growth

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Growth

I write of my garden as it grows through the years

The experience of life, the joys and the tears

I write to keep track of the planning and sowing

I write, unabashed, of my passion for growing

I write for myself, and so loved ones can see

The earth, the breeze, my garden and me.

N. Platto

I found this stanza of a longer poem, source long forgotten, circa 1997.  I didn’t know the name N. Platto then, and a quick search now does not provide any further illumination. Actually the SearchEngine was quite adamant that what I really meant to type was Plato, but I insisted it wasn’t.   I am no expert in Ancient Greek philosophers, but N. Platto is clearly not to be confused with Plato, who does not sound like a big fan of flowery poetry in general, and probably did not compose anything with this cadence.  Growth is a simple poem, and I am embarrassed how much I like it since I am pretty sure cool poems are not supposed to rhyme.

I rediscovered this poem today when I found an old garden journal I started while we still lived in Minneapolis, during the chapter when my life was slowly turning full circle from career to creator.  I still have this journal of the Minneapolis gardens, of course, because I find it difficult to part with nostalgia, and it was such a shiny, new, happy time in my life.  I wanted to remember.

As an “enthusiastic” Rememberer, I have been labeled a pack rat, too sentimental, and at worst, a borderline hoarder.  Let me be clear – I do not have stacks of newspapers from the 1980’s towering around me, no mountains of old yellowed margarine tubs filled with flotsom, no crates of oranges rotting on the porch.  I do not have a room full of dead cats that I can’t bear to part with.  I do however feel the need to hold onto some/quite a few boxes of memorabilia, just until I don’t need them anymore.  Admittedly, this process takes me a smidge longer than your average crazy-ish person.

Yes, things are just things and they are not what life is about and if I lost it all my nostalgia in one fell swoop it would be what was meant to be and I would live.  I could be anywhere with nothing and as long as my guys were with me it would be enough.  Stuff is just stuff and material possessions do not bring happiness and I know all that already.  Society values someone with truly excellent disposal skills that are measured by uncluttered rooms and closets and basements and garages.  And guest rooms.  I get it.  I value the peace that comes with simplicity, and strive for that state of zen.

I like to keep old things.  I always have.  And those certain objects that I was pressured into parting with before I was ready?  I still mourn those items.  They haunt me.  I don’t know how else to explain it, other than I was not yet done absorbing and understanding what those objects were trying to tell me. About who I am and who I was and where I came from.

I kept the Minnesota garden journal, pages full of photos of the same garden beds taken in spring, summer, fall and winter over a five-year period.  I liked watching the progression of growth, and the pages helped me remember where certain plants did well and where they failed.  We moved from that garden 11 years ago, and, as is now painfully obvious to anyone paying attention, I still have the journal. I rationalized holding on to it so I could look back and cross-reference certain flora complete with their Latin names, as this information would be surely be useful in the future and therefore it was OK that I kept it.  I don’t have to feel guilty about wanting to keep something if it is potentially useful.  For reference purposes.  Of course, I haven’t really looked at this volume for 10 ½ years, but, see?  I knew I wasn’t done with it yet.

I now know I was meant to find this journal, this spring, so I could revisit a feeling that has laid dormant for a long time.  I still have this journal because I was meant to find that poem again, and now I have.  Now I can write about the time and the place and the feeling of warm dirt on my hands when the long Minnesota winter finally ended and the plants nearly sprained themselves they were so ready to reach the sunlight.  I can write about it now, and I can remember.  Now, finally, it is time for that item to go, to be recycled.

*

Spring

Cool moist earth, ready to turn,

Peonies pushing, unfurling ferns,

These welcome, familiar, early spring urgings

Find me tools in hand, adrenaline surging.

As the first robin lights on my pond and tree

The earth, the breeze, my garden and me.

N. Platto

the Gift

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Posted 2011.

I was given an unexpected gift.  I was able to turn back the clock, on a snowy day in January.  I was able to live an experience that I’ve regretted missing the first time, and thought was gone forever.  A writer can rewrite chapters, but who has that luxury in life?

I often feel a bittersweet-ness as my kids grow up — the wonder of seeing both boys become functioning future citizens, and the simultaneous mourning of the little boy days left behind.  The days of toys and picture books.  The days of trains.

The Professor was the one who lived and breathed trains, from age two until what we can now refer to as the Unfortunate Nascar Years.  Trains, every day– the first thing he talked about in the morning and last thing discussed at night.  When he first learned his dad was an engineer, his excitement surely stemmed from the belief that Dad drove the trains.

The Little One’s interest in trains seemed to stem more from the need to do whatever his older brother did, and then the thrill of systematically destroying his brother’s meticulously crafted layouts.  I remember little of the days we can now refer to as the The Dark Years, when each day seemingly ended in wailing and gnashing of teeth in biblical proportions.  Granted, this only lasted from approximately 2001 – 2006, which if you do the math is… well, many, many days where I knew I should feel grateful for the priceless opportunity to be a full-time mom, but I often didn’t.  I wished many of those days away.  If I published a memoir of journal entries from that time, the volume would serve as an excellent form of birth control.

It is entirely possible that I never played trains with The Little One for more than 10 minutes in all those years.  He was such a Pocket Nazi during his formative train-playing days that I would lose my temper with him often, and have to remove myself from the situation before I went all out and lost my mind.  I loved that kid fiercely, but let’s just say I frequently needed to count backwards from 100.  Thousand.  I’ll leave it at that.

I thought about the trains, and many of their old toys, just last week when we cleaned the entire house in preparation for guests.  As we piled toys onto basement shelves and closets, it became clear that a thorough sweep of the Basement Land of Misfit Toys is long overdue.  He kept saying “Ooooh, I remember THAT!” and wanting to take things out while I was putting them in.  He’s a tween, half demanding to be grown-up NOW, and half still a little boy.  Someday soon we will purge the toys that they have not played with in years, I thought to myself, with a twinge of… something, undefined.

Then, during yet another snow day home from school, The Little Man unexpectedly carried the impossibly heavy bin of wooden trains upstairs — the old, well-worn Thomas trains and bridges and tracks – and he looked at me.  Without a word, we went together into the den and we played trains on the floor.  Together.  I had so much fun, and he did too. We took a picture of the final creation.  I think I’ll frame it in a double frame, with an old picture I have of him, “Colezilla”, stomping through a huge train layout with a look of devilish glee.

In those old days, I never had the patience.  I was always too busy trying to find time to be me.  Now I was given the incredible gift of a do-over.  A mulligan of motherhood.  And I treasured every minute.

Becoming a writer was just a dream back then.  I saw many women were able to combine motherhood and writing very successfully;  I had not yet reached that chapter, in those years.  Today I have the space to write, and play, on a magical, snowglobe-y day.

time

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Time goes, you say? Ah, no! alas, time stays, we go.
Henry Austin Dobson

Oh, Henry — I think time does go.  I don’t understand where it goes, but it definitely goes.  I spend an ironic amount of time thinking about time, and all the while its passage carries tasks and jobs and notes and deadlines and memories right down the river with it, and nothing I do will stop it.  The things floating just out of my grasp are the things that are important to me, and they still float away.  This is confounding.

Time is but the stream I go a-fishing in.
Henry David Thoreau

OK, this seems like a good idea… calming, centered.  The speed feels right.  But oh (another) Henry, this idea vastly underestimates the current’s ability to carry chunks of my life away, the things I try to accomplish.

I submerge myself into one aspect of my life to try to complete something, anything, and in the blink of an eye, months have gone by.  I spend time — no wait, I invest time — in being healthy and happy with my life, my present.  Being present.  And before I know it, I discover something utterly discombobulating, such as my friend is quite pregnant and I did not even know it because even though her blog is on my short list of ones to read regularly, somehow until yesterday I had not read it since the end of August, which is unfathomable.  Where did five months go? She finds time to keep blogging and grow a brand new human.  At the same time.  With four other kids.  I don’t understand it.

Time is the school in which we learn, time is the fire in which we burn.
Delmore Schwartz

OK, now this one is flippin’ frightening.  It makes me want to crawl back into bed and pull the covers over my head.  For a long time.

NEXT, please.

Time is money.
Benjamin Franklin

I suspect that Mr. Franklin would not get along well with Mr. Thoreau.  Surely they would waste time squabbling; the philosophies are at odds.  My head hurts when I try to think about both of their ideas at once.

To achieve great things, two things are needed; a plan, and not quite enough time.

Leonard Bernstein

OK, maybe we are on to something here.  Not-quite-enough-time makes the minutes grow three sizes, plus two; somehow the hours can balloon open to hold a week’s worth of effort.

Of course, the theory only applies to the One Thing for which there was not-quite-enough-time, and meanwhile everything else goes to hell-in-a-handbasket and I wake up five weeks later to find the Christmas cards still on the dining room table, complete with 100 stamps and address labels and the address book.  On January 15th.  I don’t understand it.

The best thing about the future is that it comes one day at a time.
Abraham Lincoln

And with that in mind, I’ll keep riding the tide.  Please catch me if I float by you on my way to somewhere.

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