day in the life
the everyday life of a couple living well with a slow-growing
always easy, and there will certainly be sorrows and losses
along the way. But being alive is good. It is very good.
Ready for some football
had television in maybe six years. I think it
because our set quit working, and we didn’t
have time to watch TV, then they
came out with the new digital stuff, and well ... we just never
got around to getting another TV.
But while we were
in SunRiver last weekend, Hubby watched quite a bit of college
ball, and it seemed that he stayed awake more. So I talked him
into getting cable for football season.
I emailed some
friends who had offered once to loan us a spare television. Wondering if their offer was still good.
“This is going to sound awkward, but in
lieu of flowers, we’d
like to pay for the cable during football season.”
Hubby and I both
got a little misty-eyed over this incredibly thoughtful gesture. Instead of buying flowers after
Hubby’s gone, they
want to do something that would
bring enjoyment while he’s
received an unexpected check in the mail, so we bought
a flat-screen TV. The cable guy showed up last evening, and
Hubby is now in business.
Are you ready for
Kid in a candy store
Humor me one last birthdayversary post.
Before we left home
for this four-day weekend in the woods—which ends today,
package arrived in the mail.
Hubby wore the
cutest grin as he unwrapped the box. And then unwrapped the
individual items inside.
Kid in a
candy store. Literally.
Izze beverages. Champagne glasses. Mixed nuts. Playing cards.
Candy. Gum. DVDs. Microwave popcorn. A
make me happy”
sign. Green bills with instructions to go out to dinner ... or
The package came
from one of Hubby’s
nieces. Brittany. One of several beautiful young women who love
their uncle. Despite the fact that he teased them all
mercilessly as they were growing up. Or maybe because of it.
Notice the dark
green card with a white coffee cup in the foreground. It
mysteriously disappeared from the collection of gifts shortly
after the box was opened.
in a safe place.
You may remember
that Hubby insists on getting to eat whatever he wants on his
birthday. A break from my enforced healthful eating these
past ten years.
This year, he thought it would be fun to
barbecue burgers. Real burgers. Not turkey burgers.
I made oven fries, and cut up a salad and some
cantaloupe. And of course there was the infamous German
The problem with
all that? Hubby’s
been eating whatever he wants for the past couple months, so
breaking the rules isn’t
quite as exciting as it used to be.
enjoying our last full day at this vacation cabin. We just got back
from a bike ride. I let Hubby set the pace and go the distance he
wanted to go. From Harper’s Bridge
out to the marina. He probably rode
too far. But it was what he wanted to do.
Horses grazing along the trail. Purple
mountains majestic in the background.
River traffic with
just a hint of fall foliage.
A coyote on the
alert, sharing the field with a four-legged beauty.
When we got back to
Hubby took his second nap at the kitchen table. A
newly-discovered sleep position that relieves pressure off his
back and kidneys.
As I write
dozing on the
couch next to me. His third nap of the day. And it won’t
be his last.
homework with me this weekend. The hospice social worker handed
me a booklet on death and dying.
would be good to read,”
what it says
the normal sleeping pattern during the dying process is
virtually identical to the normal sleeping pattern of newborns:
off and on around the clock.”
sleeping pattern. To a tee. But he isn’t
anywhere near the place described in the booklet. His exhaustion
and drowsiness come from cancer-related pain and meds.
These frequent naps
because he only has weeks left to live. They’re
because he got out today and rode several miles on a bike.
still enjoying life and living it as full out as possible.
I love this time of
year. I love the colors, the cooler temperatures, new beginnings
as in school days and football season. I love Thanksgiving, the
promise of snow, and the thought of winter holidays just around the corner.
One more birthday,
one more shared anniversary. Priceless gifts, these. Because
suppose to live this long.
Happy first day of
autumn. Happy birthday. And happy anniversary, my love.
German Chocolate Cake
Summer and Oldest Granddaughter Lilly were visiting in June,
requested nagged, harassed, harangued the
girls to bake a German Chocolate Cake. (We’re talking daily
from-scratch GCC I baked was ten years ago. Pre-cancer days.
(Well actually, I experimented once with whole wheat pastry
flour and Fruit Sweet and a healthy butter substitute.
I can hear Hubby’s brothers now: You did
German Chocolate Cake?!)
And so, I brought
ingredients and round cake pans to this vacation rental. White
flour. White sugar. Real butter.
And ingredients for
homemade coconut pecan frosting. Because German Chocolate Cake
isn’t GCC without coconut pecan frosting.
Even though Hubby’s
birthday isn’t until tomorrow, I thought we should get started
early. Since it’s going to take us a while to eat the whole
So last evening,
while college football played itself out on the large screen, I
baked a German Chocolate Cake.
The only problem
was, we had eaten a late lunch (I brought plenty of food for the
weekend, but Hubby showed me a new recipe that looked good, so
guess who dropped what she was doing, made a trip to the local
grocer, and baked a Taco Casserole).
Which means we
weren’t hungry for dinner until about 8:00
last night. And neither of us
wanted to stay up until midnight to be hungry enough for cake.
Confession: One of
us may have had a piece of German Chocolate
Cake for breakfast.
quite make it to Alaska to celebrate our anniversary and Hubby’s
a long story that has to do with ureteral stents.
But we are
celebrating in SunRiver. Where we’ve
rented a vacation cabin with
sloping rooflines and wood-lined ceilings and nothing but trees
out the front wall of windows.
on the back deck
And where I stayed in pajamas until 10:38
this morning. First
sign that it was going to be a great day.
By late morning,
we were cycling near the river. Hubby leading the way. Taking us further
down the paved path than I thought he would. Hoo-ray for some energy
Just about your
perfect day. And it’s
not even over.
If Hubby can figure
out the three remotes and how they’re
related to each other, then we’ve
got Oregon Ducks to watch. If this cabin has access to the right
channel. If Hubby can figure out the remotes.
And this is only
the first day of a four-day weekend. Love long weekends with Hubby. In a cabin.
Under impossibly tall trees. With a river flowing nearby.
Hubby *liked* a recipe page, and now full-color food
pictures scroll across his Facebook page. Daily.
“Hmmm, that looks
good,” he’ll say, as he hits the print button,
where it travels wirelessly, where I pick it up
off the printer, shop and cook. All from the comfort of his
chair. He doesn’t have to move a muscle until he hears,
mushrooms. Broccoli Cheese Bites. Easy Cupcake Lasagna.
Scalloped Potato Gratin. These are the things that sound good to
And at this point
in the journey, anything that sounds good is fair game. Although
I did veto the Baked Cheddar Chicken because it called for
chicken rolled in crushed Cheese Puffs. Cheese Puffs? I don’t
Yesterday I made
Chicken Parmigiana. Chicken breasts pounded thin, slathered in
flour, dipped in egg, coated with panko bread crumbs, cooked two
minutes on both sides in hot olive oil, layered with pasta sauce
and mozzarella cheese, and then baked for seven minutes. Served over
Sometimes Hubby has
some pretty good ideas.
When we moved into
this tiny duplex, Hubby attached a rubber ball to a rope and
hung it from the garage ceiling. To mark the place where we
Even with the
hanging rubber ball,
greeting usually includes directing my landing into the
garage. Much like those guys on the tarmac with the oversized
headsets that motion the airplanes to their berths.
(Just in case I’m
not smart enough to stop when the windshield hits the rubber ball.)
Hubby hasn’t felt like directing much of anything. I hate to admit this, but I’ve missed his
Which brings us to
yesterday. Yesterday, wearing his cute, mischievous grin, Hubby
heard the garage door open and came to greet me, hand signals
guiding me to the berth.
And then he
helped me wrestle
a mattress and box springs out of the guest room to make room
for a hospital bed.
And then early this morning I hear the vacuum cleaner
vacuuming the guest room in preparation for the delivery of his
own hospital bed. What is wrong with this picture?
So I say, if he can
do my job of vacuuming, then I can do his job of trying out the
new hospital bed.
in with books, knitting and hot honeyed tea
My heart is full of gladness that Hubby has a bit more energy, and that
maybe an adjustable hospital bed will provide a better night’s
sleep for him.
That is, if he can
drag me out of my new favorite comfy spot.
One of my mothers
You already know I
have fabulous co-workers, particularly the three lovely young
women with whom I share an office.
Two of them—Jessica
and Alycia—found me in a less-traveled waiting area of
the hospital on Wednesday. Hubby was having an outpatient procedure.
The first thing
Jessica asked was,
“Did you eat today?” As if it’s
any of her business.
She went back to the hospital café and purchased a
protein-infused fruit smoothie. Mango.
One of three
mothers in my office. All around the age of my daughter.
Hubby and I are surrounded by so many incredible
people, and held by so many prayers.
For which we are exceedingly grateful. For the rest of our
Thoughts from a hospital waiting area
writing this from a darkened hospital pod, Hubby dozing nearby under a
warm blanket prepped for outpatient surgery.
I’m tired. And I
suppose I shouldn’t write when I’m tired. But there are thoughts
tumbling around in my head waiting to get organized.
Once upon a time,
Hubby and I were panel guests, along with a doctor,
administrator and social worker, at a hospice care conference. I
remember expressing my concern about knowing when hospice should
it be nice if palliative and hospice care were introduced as part of the overall
cancer team early on so the caregiver doesn’t have to make the decision about
when and if to call in reinforcements?”
As it turns out,
getting hospice involved was as simple as the oncologist’s referral.
to this point,”
he said to us on Tuesday,
the care has been focused on the patient. But who’s taking care
He pointed toward me.
“Hospice will help
take care of the caregiver,
My eyes teared up.
a good idea to get them involved early,”
he said. “Instead of waiting for a
I’m a planner by
nature. I want a general idea of where we’ll
spend Thanksgiving this year. And Christmas. I want to know if
wise to book an Alaskan cruise for our anniversary later this month.
quite a bit hospice can do for the terminal patient and his/her
family. Social work. Paperwork. Helping access at-home medical
supplies. Even assist with certain aspects of an Alaskan
involved doesn’t mean Hubby’s moving into Hospice House to die.
It means more members of a care team dedicated to Hubby’s health
And apparently to
my health and welfare. Which is a comforting thought. Because
all this is overwhelming at times. And I’m exhausted.
Thoughts from a
hospital waiting area.
Down a lazy river
down a lazy river with Hubby’s siblings this morning and ...
... I’m sorry to
report that they’re still acting like tourists.
At one point, sis-in-law
broke out into a rendition of
Which was better than bro-in-law’s
a Small World.”
know, I know. It was good there was very little river traffic
I used to not be
able to sit still and do nothing. Maybe it was because I found my worth in being productive.
In checking things off my to-do lists.
something that Hubby’s cancer is teaching me as our lifestyle
has slowed down a bit lately: Enjoy the pace.
breath. Notice the beauty.
And the peace.
Take pleasure in
every slow river float.
We were in no
danger of exceeding the posted speed limit. Which is exactly
what we had in mind for this lazy morning on the river.
so sure about getting into a raft with her offspring. But I hafta
say, I think she had the most fun today.
Tuesday, August 26,
Hubby’s siblings visiting—was to
browse through the quiet, western town of Sisters, followed by
dinner at Tumalo Feed Co.
Pretty safe. They shouldn’t be
able to embarrass me too much, right?
Wrong. Hubby and
his siblings had tourist written all over them.
And then Mrs.
Napkinhead showed up at
I can’t take
Monday, August 25,
Hubby’s mom and
sibs are in central Oregon for a week. Pull out the
We’ve never done a
*siblings and mom-in-law* vacation together. I’m exhausted from laughing so
much. Great medicine for Hubby.
and sibs, minus Steve :(
We’re in the small
resort town of SunRiver. Deer in the backyard.
Couples taking turns
cooking (does my heart good to see the Johnson men in the kitchen).
Eating way too much
cornbread and rhubarb cobbler for dinner tonight
Checking out the
local mountain lakes.
And running the family
Having more fun
than a bunch of old people ought to!
Monday, August 18,
Creamed tuna on toast? Really?
are already causing trouble even though we’re not scheduled to
begin our vacation together until this weekend.
We’ve been shooting
a flurry of e-mail back and forth planning menus when one of
Hubby’s brothers made a suggestion:
do want mom to make cream tuna on toast but do not tell [my
Which got Hubby
reflecting nostalgically on his childhood and how good his mom’s
creamed tuna on toast was.
And then he pulled
out a couple of family cookbooks, which really got me worried.
Thanks to the
cancer center dietician, the new philosophy in our home around
Hubby wants, Hubby gets.”
had for lunch
remember if his mom’s
version had peas in it
I’m pleased to say
that my creamed tuna on toast did not taste as good as
mom-in-law’s version. Or at least as Hubby remembers it.
Which means I’ll
always be able to say:
I can’t make creamed tuna on toast because it just won’t taste
as good as your mother’s.”
Had me worried there for a minute.
Sunday August 17,
Creating the life you want
Drake Park. The
scene of this past week’s date. (Have I ever mentioned how much
I look forward to Friday date night?)
Seafood for Hubby
and teriyaki chicken for me, with foot traffic and water traffic for
Relaxing. Spending time side by side.
But then yesterday,
I did something not so side-by-side. Hubby talked me into
joining up with the cancer-kicking hike group. Probably to get
me out of his hair (what hair there is after chemo).
don’t want you to feel left behind.”
know how much you love hiking; I want you to go.”
enjoyed the exercise
miles round trip
with an 1100’
elevation gain; and
it was nice knowing I could keep
up with the hike leader even though Hubby and I haven’t done a
serious hike since pre-chemo and radiation days;
scenery is incredibly beautiful, the trail never too far from
the sound of Fall Creek tumbling down the mountain, still ...
was something missing.
A hole in this photo where Hubby fits
perfectly. A lonely spot in my heart along the trail.
One of the two Green Lakes, flanked by South Sister
to the north
I don’t think I’ll
be doing a lot of hiking without Hubby. Because time is
precious. Because time represents life. Because we don’t know
how much of our lives remain, whether we’re dealing with
terminal cancer or not.
Someone wise once
time will pass anyway. You can either spend it creating the life
you want, or spend it living the life you don’t
want. The choice is yours.”
The life I want is
living side-by-side in the moment with Hubby. Not shelving our dreams, but
enjoying this time together (together being the key word). Heart overflowing with
gratefulness. Counting blessings.
As much fun as date night is, to my logical way of
thinking—which is something I do quite often, this logical
thinking—Hubby and I should establish two date nights a week and
double the fun. Right?
Johnson women unite
This is about trust
in marriage. And how important it is.
Due to a blood clot in his leg, Hubby now has to give himself a
shot in the stomach. Daily.
For some reason, he
declined my generous offer to do it for him.
And then I
overheard a conversation between Hubby and one of his brothers.
oughta let Marlys do that for you.”
I don’t trust her.”
Hubby went on to
tell his brother how I had once offered to clip his toenails ...
and how I’d clipped the top of his toe in the process.
Sheesh, is he still bitter about that?
don’t trust [my wife] to do anything for me either.”
Wendy, Cheryl – the Johnson women need to unite. (Not sure what
we’d be protesting, but we need to unite.)
Hubby has several small bruises on his stomach. I am pleased to
report that I am not responsible for any of them.
Tuesday, August 12,
We learned today
that Hubby’s cancer has metastasized to his liver. Ten spots
that weren’t there in May. His PSA count is at 103.
Once again, not the
news we wanted to hear. But there’s still much of life to
And so we visited a
place in town we’ve never been to. Because we heard they make
good Reuben sandwiches. And because every Tuesday evening at
6:30, a group of ukulele players entertains there.
And we know this
because it was this same group that provided fabulous
around-the-campfire-S’more-making music at Soaring Spirits Camp
this past weekend.
once interviewed Warren Zevon, a composer and performer, who was
dying of lung cancer. Letterman asked, “From your perspective
now, do you know something about life and death that maybe I
To which Zevon
replied, “I know how much you’re supposed to enjoy every
Taking nothing for
granted. Enjoying this husband. This ukulele music. This
Sunday August 10,
Nothing says camp like running off the end of a dock, right?
The photos may look
the same every year around this same time when St. Charles
Cancer Center hosts its annual Soaring Spirits Cancer Survivor &
Family Camp (ninety-two campers this year).
But they’re really
Sure, every year,
one of our oncology nurses brings her horses.
And every year,
co-worker and Crafts Queen Lizzi comes up with some pretty
amazing craft projects – sun catchers, beading, decorating photo
frames with a fun
Every year, campers
of all ages flail away with hammer and nails, creating
And every year
there’s a writing workshop for would-be authors and a water
color class for budding artists.
And always, plenty
of water activity.
impressive, a one-armed canoeist
And every year,
marshmallows, graham crackers and chocolate around an
evening campfire – this year with a 15-member ukulele band
playing lively S’more-making music (I can’t seem to get
out of my mind).
And every year
we plant a tree during our Sunday morning Celebration of
The photos may
look very much like last year’s photos. And those from the
different. Because they represent new campers and new
friendships forged. The sharing of life and encouragement.
The exchanging of e-mail addresses. People that were perfect
strangers on Friday, hugging each other good-by this
You wanna know
one of my favorite things about our annual cancer camp?
Charles Cancer Center staff hard at work
We are all about
helping create community to reassure cancer survivors and their
caregivers that they are not alone on this journey.
I get to work with
some of the best people on the planet.
Thursday, August 7,
pretty bad, isn’t
it, when you walk into the surgery prep area and the nurse
greets you by first name?
Today was our second visit in two days. Same male nurse checked
Hubby in yesterday and today.
Same female nurse accessed his port. And the nurse who did his
done them before.
Christine and Katrina
Yesterday was Hubby’s
regularly scheduled nephrostomy tube replacement surgery. So we
went through the
And then Hubby decided he wanted to go back to the hospital in
the middle of the night. And then again today. Something about
kidney pain and tubes not draining.
Really? A girl needs her beauty sleep, you know.
Just for the record, no beauty sleep was gotten during any of
the aforementioned hospital visits. Well, except for the patient
who peacefully dozed under a warmed blanket in a comfy hospital
bed after being pampered by so many nurses, one of whom kept
calling him sweetie.
Gotta love those St. Charles nurses.
Saturday, August 2,
walked a 3.2-mile loop of the Deschutes River trail today. A new
distance record for Hubby since completion of chemo and
also resumed our after-dinner walks. Earlier this week, I came
across this flower growing out of a gutter in the neighborhood.
It reminds me of
Not sure Hubby
would want me to refer to him as a lovely flower. But I was
thinking more along the lines of tenacity. One of my
This flower has
pluck. Hanging in there against all odds. Surviving in limited
resources. Doing what it was created to do, despite not-so-great