For my blog entries back to 2007, click on "View my complete profile," scroll down, and click on "How did I do that?" (It's about my first bout of breast cancer.)

Tuesday, February 20, 2018

He takes his life . . . and most of mine.

Jake Skibba 1979-2016

Only the Memories

Oh, how tiny you were.
You couldn't latch on,
refused to perform
for gentle neo-natal nurses.
   Warm soy milk.

How mottled you were.
When at last I brought you home
your grandmother wondered
how I could care for one so small.
   Transparent skin.

How I'd walk with you, wide-eyed
in your yellow umbrella stroller.
I showed you the new bridge and
the Sugar Bowl cafe coming down.
   Dust and noise.

How you were mistaken for a girl.
It was my fault, of course.
I couldn't bear to cut your hair
after the spot they shaved grew back.
   Blonde silk.

How we visited the library
and borrowed puzzles,
but all you wanted to do
was put the pieces in a frying pan.
   Wooden spoon.

How you had to be coaxed into
eating breakfast before school.
I'd make a “happy plate,”
arranging your food like a picture.
   Edible art.

How you loved those stories
about a badger named Frances
(with her smug disposition)
and a mischievous child named Hattie.
   Giggle time.

Hattie be quiet. Hattie be good”
you'd pretend to read aloud,
enunciating the double T's,
and exhaling with your H's.
   No baby talk.

How you beamed in first grade,
darting from your room that day,
exclaiming “I can read! I can read!
Mom, I can read!”
   Think light bulb.

How you loved my sticky notes.
You put one on the ironing board
that said “I need a hog.” When discovered,
I indulged you with a loving hug instead.
   Mistakes don't matter.

How you loved collecting things.
Erasers of every shape and color
appeared at our feet, arranged like careful mosaics,
blocking doorways, gracing halls.
   Fine art, I said.

How you never fussed about wearing
glasses at the ripe old age of eight.
They emphasize your intellect,” I said,
and you never took them off.
   Smug little nerd.

How you ran to me with a tiny cut
I'd cover with a band-aid, careful not
to touch the sticky part until affixed to you.
Only moms do it that way,” you said.
   When Band-aids did the job.

How you found yourself in Catholic school –
new town, new school, new 8-year olds.
You sat quietly for morning mass
when all the others knelt or stood.
   The non-Catholic.

How, on the last day of fifth grade,
you taped a note to my bedroom door.
I really want to move back home,”
you begged, “I want to live with Dad.”
   Wicked step-dad.

How you cooperated with my need
to see you every weekend then,
traveling half the way with Dad
and half the way with me.
   Parking lot exchange.

How you saved your money all year long
to light the sky and blow things up
on the fourth day of July –
an annual show for friends, for family.
   Your own tradition.

How you delivered the news on roller blades,
so swift, so sure – self-satisfied.
Newsprint photo on page one. It's you,
with a story to make a mom proud.
   Below the fold.

How we loved to try to catch the other
with some crazy made-up story.
Like the night I told you stop signs
weren't meant to be obeyed after midnight.

How you memorized your favorite lines
from movies that you loved,
and delivered them with perfect timing.
Someone else's words to fill the void between us.
   Borrowed lines.

How you moved across the stage,
the class of '97.
I watched you, in slow motion,
as you took that turning point with honors.
   4.0 gold tassel.

How you insisted on a private room
in the freshman dorm that fall,
your need for solitude no mystery.
And when we left, you quickly closed the door.
   Keep out.

How, that first semester, you met the devil
whose name was Calculus.
His vulgar voice inside your head played on and on,
You're not so smart, this pond is large, young man.”
     Not like high school.

How you let that devil ruin you.
How quickly you gave up.
How's it feel in that big pond, little fish?”
The only voice you heard, the only one that mattered.
   Big fish abound.

How then you turned to music, with
classical guitar, your major.
And next you thought “a pastry chef, the culinary arts.”
Or architectural landscape since you liked to mow the lawn.
   Out of focus.

How you took a job, short-order cook.
Who could know the sway of kitchen staff,
the drugs, the alcohol,
would take you on that dangerous ride?
   Over-easy ecstasy.

How you floundered that next decade.
In school, out of school, this job, that –
Nothing ever satisfied
that drive you had to be the best.
At something.

How you lived with a woman who cheated
on you – six long tumultuous years.
Then three more years would come and go
before I learned that secret and the pain it put you through.
   Afraid to try again.

How you pulled yourself together then –
Good job, a mortgage, your best-friend dog.
You fenced your yard and
in the spring your neighbors loved your rhubarb.
   A house not home.

How the house you bought was old,
rundown, and needed everything.
You thought you'd fix it up,
but all you did was tear up every room.
   Not a fix-it-yourself kinda' guy.

How we took a spade along
to walk your dog on public trails
and stole the tiny maple trees
still standing, alone now, in your yard.
   Marking time.

How you loved all manner of music
and copied library CDs.
The perfect illegal hobby for a single guy
with student loans, car payments, and a long commute.
   Always broke.

How the more you regretted buying
your humble property,
the higher grew the weeds
and your tools, left out, now rusted.
   Who cares?

How the lack of garbage pick-up
meant you hauled your own detritus, paid a fee.
So your car gave up the garage
to bags and bags of that which wouldn't burn.
   Trailer trash.

How you had less, and less, and less to say --
to me . . . or anyone.
The times we spent together, all the empty space
you'd try to fill by showing me your best-loved tv shows.
   Stilted repartee.

How you kept your problems from me.
Addictions, loneliness, regrets.
I thought it meant you felt more settled,
and perhaps with age, you'd mellowed.
   Little did I know.

How you took the future into your own hands,
choosing to leave us all bewildered.
With an email note apologizing
for any inconvenience you may have caused.
   Braided, yellow rope.

Tuesday, November 14, 2017

5 Years ago . . .

A burden that hovered over me the past four years ended a few months back. My new freedom was a joyful event, but it has taken me many weeks to find myself (again).

Today I find myself in a small city in Virginia, where Greg and I are staying at a lovely Hampton Inn. This was to be a work trip for Greg, but when I expressed a desire to tag along, we added stops in Philly to visit his daughter and a two-day romp around D.C. before arriving at Greg's work destination yesterday.

Being on my own, away from home, brings back memories of the way life felt to me six years ago, before cancer took over the second time.

I stumbled across my blog this morning, quite by accident, after abandoning it in 2012. I'm considering taking it up again. It's been visited an average of 23 times a week during my absense. My software claims those 23 visits are after the spam was scooped into a folder of its own.That amazes me. I wonder what search words brought people here.

And what would bring people back if I started publishing again?

Tuesday, December 3, 2013

Aquarium stones rock my world

(The following won’t make any sense to you unless you know this about me:  I’ve had breast cancer – twice. Total of four surgeries to remove tumors and breasts, with extremely little tissue left in that area.)

“You know what I wish I had? One of those lead vests – the kind they put on you at the dental office when you’re having x-rays.”

That was me, a few months ago, while shopping with my friend Lori at our favorite thrift store, the Goodwill Outlet we lovingly call "Bin World."

“What in the world . . . ?!” she says, though not entirely surprised. After all, both of us like crazy-talk and are, on occasion, really quite silly.

I ignore her and go right on shopping as if wanting your very own lead vest were high on everyone’s list.

“Seriously?,” she says, “What would you do with a lead vest?”

I lower my voice* and begin explaining how, in the evening when I’m tired and want to relax in my recliner, the scars across my chest are like an over-tired child. “The nerves kick and scream and make a fuss; it’s like I just woke up from surgery and the pain meds haven’t kicked in.”  I tell her it feels like an electrical storm in my nervous system. “I fold my arms across my chest to keep my nerves from jumping out of my skin.”

Without pause, she says “Well! have I got a remedy for that!”  Her tone suggests I might have known she could fix something as simple as an electrical storm in my nervous system. She offers no more, and I don’t ask. That’s just the way we play the game, Lori and I.

A few days later she is at my door with a goofy grin and a tissue-topped gift bag.

“Don’t let the tissue paper fool you,” she says as she offers me the gift – one hand holding the handles, the other supporting the bottom of the bag.

I take the bag by the handles. It is surprisingly dense. (By this time, of course, I have completely forgotten our conversation about the lead vest.)

“It’s a Chest Crusher,” she says excitedly. “It’s Model 1.0, awaiting evaluation!” Of course I knew, then, it was her invention and handiwork, knowing how innovative and creative she has always been with a sewing machine.

Indeed. Chest Crusher 1.0, that evening, turned out to be quite the comfort. (Shown below with its eight pockets of aquarium stones, separated for even distribution, and its sporty slipcover.) It is the best, most repeatable, long-lasting hug money couldn’t buy.

Not only does Chest Crusher 1.0 bring relief in my recliner, it goes to bed with me as well, offering all-night comfort for messed up nerves.

'Next day I naturally express sincere gratitude, and just as naturally, she asks if there are any improvements that might be made to Chest Crusher Model 2.0.

I tell her 1.0 is the essential bed partner because its ample length means I can drape it over my back and around the front of me when side-sleeping. “If I had a slightly shorter version for use in the recliner,” I tell her, “it would just reach across the scars and not create bulk under my armpits.”

And, of course, she is happy to indulge me with Model 2.0 – the ultimate Chest Crusher for daytime and evening relaxation.

I love my Chest Crushers! One lives in the bedroom upstairs. The other stays on the first floor. What a privilege it is to have thoughtful friends who enjoy being creative with a sewing machine (and also knitting needles). You know who you are, all four of you.

Should this story reach others who might be comforted in this manner, please email I’m sure Lori would be tickled to provide DIY instructions for either model.

*I’m pretty sure I didn’t have the good sense to actually lower my voice, but can only wish I had that kind of tact and presence of mind in public places.

Saturday, June 1, 2013

Half a year later, an update!

Front yard from our bedroom window. You can almost see things grow this time of year.

Now and then I check the Feedjit gadget showing how many people are still looking at this blog. It amazes me, since my last entry was half a year ago.

The least I can do is give you an update on the cancer thing.

March, April and May will remain in memory as a time that went from darkness to light.

What appeared on a CT scan in March to be a torso dotted with cancer turned out to be cracked and broken ribs -- both front and back -- all on the left side where they zapped me with radiation in 2007 and again in 2011.

During the ensuing week of clinic visits and various added scans, someone (finally) suggested I see the Wound Care Clinic about the open sore (by then 18 months old) in my scar line. This, too, remained as part of the aftermath of second-degree burns from 2011's radiation.

Seven weeks of special potions and dressing improved the open sore -- and by the time I was allowed audience with a plastic surgeon, I knew I wasn't about to let anyone cut me. Good enough is good enough. The plastics guy agreed I wasn't a candidate for a skin graft.

Before I learned about my fragile ribs, I'd been going to the Y five or six times a week. Not only was I trying to regain upper-body strength, I was trying to lose the 15 pounds still hanging around after my last treatment and hoping to improve my energy and level of happiness.

When Oncology diagnosed the fragile ribs, Dr. G. expected I'd be thrilled. Not cancer, after all. Instead, I pouted. I'd been ready to hear I was riddled with cancer, but not ready to hear I'd have to stop my upper-body workouts and attempts to lose the weight.  Dr. G. lightheartedly told me not to hug anyone, use any of the muscles attached to my left rib cage, and "certainly, don't fall or have any kind of accident."  This wasn't the first time I'd wanted to slap his smiling face.

Eventually I stopped pouting. At the Y, I concentrated only on aerobics on the elliptical trainer. I began counting calories ( really helped). I solved the energy/depression problem as best I could with more drugs. I abandoned my hope of being able to go bra-less and instead began wearing tight binding over my scars 24/7 as a means to achieve comfort around my torso from too many surgeries and not enough skin.

The darkness started to fade about a month ago when I came to a place of finally accepting what is (again).

Coincidentally (?), perennial gardening started around the same time.

I've lost about half the weight I so abhorred.

For the past few days, I haven't had to take what Greg calls my "speed" in order to get through the day.

All's well that ends well. I wish I knew for certain that this is the end of cancer treatment for me. In the meantime, most days it doesn't occur to me that there might be a third time and I find moments of bliss returning.

There's always hope.

Thanks for checking in!

Wednesday, December 19, 2012

"Is your cancer in remission?"

I don't really know what remission means and I'm not about to research it. All I know is that I show up for my surgeon's and oncologist's suggested follow-up visits. (I rather flatly refuse to follow up with Radiation- Oncology. I want them to know how pissed I am. And yes, I know how ridiculous that sounds.)

The surgeon regularly gives me a no-breast exam. The oncologist looks at my blood for whatever possible signs of recurrence might show up there. He also sends me to periodic PET scans to look for more advanced signs of cancer that might not show up in the blood. Overall, it's anyone's guess whether cancer cells are still skulking about. We'll know when a tumor appears, just like the other times.

Meanwhile, I've come to use each day for doing things I love and taking the best care of my body and mind that I can. (After all, they are my oldest and dearest companions, as we say in Mindfulness Practice.)  Unfortunately taking care includes juggling a host of meds. And I dole out social energy with great care -- balancing relationships with appointments, exercise, and household duties (as few as I can get by with without threat of divorce). I hoard a large share of my time for taking it easy. Fatigue and residual nerve pain from last year's wicked treatments are ever-present reminders that 1) the medical people are sometimes clueless and 2) I need to revel in the good times as they present themselves. I join the ranks of those who have dealt with difficult stuff on a daily basis far longer than I. I have a new understanding of how strong you are.

I sometimes feel as though I lead a double life. There's the pouty-angry me and the revels-in-small-pleasures me. Fortunately, the reveler is still in the lead.

Merry Christmas to all -- and especially those who continue to keep us on their Christmas-card mailing list year after year even though we don't reciprocate. Your greetings and life updates are very much appreciated here.

(Here's the last portrait completed, grandson Simon. My friend Susan is up next.)

Friday, November 2, 2012

New hobby, new me!

For those loyal followers who thought I dropped off the edge, here's a bit of braggadocio to bring you up to speed on life after my second recovery from cancer treatment.

I've discovered I love drawing pencil portraits. 'Took a class at the Thompson Center from Carole Leroy and have been filling every extra hour practicing ever since. This is a talent discovered just two months ago  that I'm sure will keep me busy the rest of my days. It is challenging, makes me focus, makes me forget my cares and those of the world. My first ever passion!

I'm posting in random order, not the order of my practicing. Maybe you can pick out the earliest and the most recent? Many of you have already seen these on Facebook, so apologies to you.

 My Aunt Agnes
 The daughter of a friend

My most difficult (son Josh); the one I want to try again.
 My buddy Paul
 Friend Mary, done on very undesirable paper. I learn everything the hard way. Don't use paper meant for architectural renderings.

 My grandson, also using the undesirable paper. Eager to do another of Simon.

 My lovin' husband who is happy I'm occupied and content these days.

 My daughter-in-law and grandson Sam.

 A quick and simple one of Katie. (Please give me a better head shot, Katie. I want to do another.)

 This is Georgia O'Keeffe.

My son Jake. 

Friday, August 24, 2012

Getting Away

Greg and I took a little 7,000-mile drive this summer and stayed away from home for 5 weeks, 3 hours, and 15 minutes.

It's good to get away for a while. It sharpens your perspective and makes you realize that some of the things you deemed important on your own home ground were a good deal less so when looked at from a distance.

When I figure out what it is I now know that I didn't know before, I'll let you know . . .

Wednesday, June 20, 2012

Best day in more than a year?

I write today primarily as a record for myself and for those women with breast cancer who follow my blog. There is, after all, hope.

For the past few months I've had a truly bad case of fatigue. I would get up in the morning, have a cup of coffee, and want to go back to bed. I needed, absolutely, a nap once or twice a day. Then I learned that my TSH level (had a physical with my primary care doc) was off, indicating malfunction of my thyroid. This is not uncommon after radiation. I was rather relieved to hear there was an answer for my fatigue and hoped my latest prescription, Levothyroxine, would kick in sooner than anticipated.

While waiting for the thyroid pill to kick in, I had a prophylactic mastectomy and port removal. I expected this to be a breeze. After all, it was just a handful of tissue, right?

My surgeon talked me into having a sentinel lymph node biopsy along with the surgery. She removed two nodes (in the armpit), and tests for cancer were negative! Healing from surgery, though, becomes messier when your surgeon's been digging for lymph nodes in your armpit.

When the two weeks' anticipated recovery period was up and I still had enough discomfort to warrant pain pills, I began to wonder. I pondered the painful burning sensation across my chest and around my back for ANOTHER two weeks before it dawned on me:  I think I have recurrence of shingles without the rash. I started taking my leftover Amitriptyline from the last bout with shingles, and lo and behold, I saw improvement the very next day.

Now, after a week on Amitriptyline for shingles, that seems to be well under control.

Another complication I developed after surgery is called "post-mastectomy cording." For some reason, since the natural flow of lymph is messed up due to nodes being removed, the body's fascia (connective tissue that surrounds muscles, blood vessels, and nerves) forms "cords." My physical therapist pointed these out to me . . . the reason for my lack of range-of-motion in my arm on the new surgery side. When she held and flexed my arm, the "cords" became visible under the skin and hurt like hell.

"They're like guitar strings," she told me. "Very tight guitar strings that need to be stretched and popped."

So while pills have been stepping up my energy and controlling the pain of shingles, my aggressive physical therapy sessions have been "popping" my guitar strings. When PT-Teresa popped one of the larger cords yesterday, not only could we hear it pop, but it felt like a gunshot -- with tremendous relief to follow.

Today was the first day I didn't nap in months. I could successfully reach the top shelf in my kitchen with my right arm, and I felt no symptoms of shingles. IT WAS AN AWESOME DAY.

(Here are pictures from my birthday in 2011 a few days after chemo began and in 2012 painting ceramics with grandson Simon. The year between these two photos will long be remembered as "my year from hell.")

Monday, June 4, 2012

A short lesson on Drain Tubes

Two weeks ago today I had prophylactic breast surgery on “the remainder.” I chose this option for symmetry (have you ever tried wearing clothing when asymmetric? A tee shirt will wind around you like a vine on a shepherd’s hook) . A lot simpler than reconstruction and hah! – no more mammograms. Or bras!

This go-round, since I didn’t have upcoming cancer treatment to ponder, I especially noticed the craziness and discomfort of the two drain tubes that invaded my torso for 9 and 12 days following mastectomy. (Removal of tubes is one at a time to make sure the job is really done before completely unhooking all the apparatus.)

Here is a picture of one of my tubes after removal.

The suction bulb hangs on the outside, as does half the tube. Notice the black stitches about midway on the tube. That’s where the tube entered my torso – and 14.5 inches of tubing snaked its way just under the skin, curving its way to a point under my armpit. (One wonders if the armpit location is chosen for maximum discomfort.)

The tube, though it appears enclosed like a drinking straw, actually has a tiny drainage ditch (slit) all the way along the length – allowing it to slurp up any extra lymph fluid in its path during the healing process. The suction bulb collects the fluid so it doesn’t build up under the skin, causing trapped pockets of fluid, or “seromas.” The bulb must be emptied twice daily and output recorded. When output is, at last, at an acceptably low level, the tube can be removed.

I scared myself silly watching YouTube videos of women having their tubes removed, writhing in pain as the doctor pulled, hand over hand. But in fact, my removals were remarkably easy because my surgeon, as she explained, was kind enough to use “the kind that don’t cause pain when you take them out.” Thank you, most sincerely, Dr. Honnie Bermas. (Known in our household these past five years as “Honey Bee.” She is indeed a sweetheart.)

Anyone who has ever had drain tubes will identify with the relief following their removal. I threatened the medical staff that I’d be dancing naked in the park that night, but in reality simply celebrated with a visit to the Murray Hovel Farm, as Josh and Brenda have dubbed their 7-acre kingdom near Plover.

So the month of June, for me, will be one of spoiling myself rotten -- except for physical therapy. PT is undoubtedly going to continue to hurt until I buckle down and do it faithfully, with sufficient effort.

Next blog: Your quiz on DRAIN TUBES: their function and logistics, complete with pencil sketch.