day in the life
the everyday life of a couple living well with a slow-growing cancer.
always easy, and there will certainly be sorrows and losses
along the way. But being alive is good. It is very good.
Sunday, Feb 28,
Uncles and nieces
We get a call from one of our nieces in California.
She’s passing through on her way to Idaho and wants
to know of a good bed-and-breakfast in Bend. That
would be us! I promise her on the phone that I’ll do
my best to make Uncle Gary behave.
It’s not that Gary’s any worse than the rest of a
long line of Johnson men who have always teased
their children and nieces and nephews. And
Uncle Gary with 3 of his 9 nieces
I remember one conversation between Gary and granddaughter Lilly
when she was 3 years old:
Lilly: “Is this a short video?”
Grandpa: “Yes, it’s this short” (measuring with his hands).
Lilly: “No, no, no, no, no … I mean is it a short video.”
Grandpa: “Yes. See it’s this short and you’re this tall” (again
measuring with his hands).
Lilly: “No, no, no, no, no … I mean is it a short movie.”
Grandpa: “Ohhh … well, why didn’t you say so in the first
So, our niece gets into town on Friday. We take her to dinner
and then come home to push the dining table up close to the
fireplace and play several games of Mexican Train with dominoes.
And Gary is reasonably well-behaved, not pestering her too
terribly much about why she isn’t married yet and does she need
his help in finding a husband.
Why they put up with the incessant teasing ... and why they keep
coming back for more
I just couldn’t tell ya!
Sunday, Feb 21,
Blue skies in Portland in February … hmmm
Not that we’re complaining, but we packed an umbrella for this
week’s visit to Portland ... and didn’t need it.
Mt. Hood and the Willamette taken from our hotel
Gary and I had a speaking opportunity at Providence
in the City of Roses, and found ourselves in the
middle of a string of gorgeous blue-sky days with
temps in the 50s. I think we can blame it on
Portland is a beautiful town with plenty to do and
see, and one of these days we’ll stay long enough to
be actual tourists.
On this particular visit, we woke up to an
incredible sunrise – snow-clad Mt. Hood silhouetted
against the light of a new day. We rode the aerial
tram from the Oregon Health & Science University
building near the Willamette River to the top of
Marquam Hill where most of OHSU is clustered.
We’ve driven this hill in the dark of November with rain falling
and fear in our hearts. But that was 5½ years ago when Gary was
first diagnosed. We’ve since learned to manage that fear.
Aerial tram from OHSU on the river to OHSU on
Afterward, we caught a street car up to Powell’s City of Books.
With more than a million volumes on their shelves and filling an
entire city block, Powell’s is the world’s largest new and used
Powell’s City of Books on the corners of 10th and
Burnside and Couch and 11th
There are nine color-coded rooms – if you can’t find what you
want in the Purple Room, try the Rose Room. They say that
approximately 3,000 people walk in and buy something every day,
and another 3,000 just browse and drink coffee. (Being a Chai
tea snob, here’s my tip for the day: don’t waste your money on
their Chai tea.) But do add Powell’s to your list of interesting
things to see and do the next time you’re in Portland.
And bring an umbrella!
While we’re on the subject of heroes
Although unintentional, the last couple of blogs have been about
local heroes. Today I attended a meeting where the guest of
honor was a garbage truck painted with purple detail
also a hero, of sorts.
The story behind the truck centers around the Martinez family,
owners of Wilderness Garbage & Recycling in LaPine. Touched by cancer.
The Martinez family recruited members of their garbage haulers
association for a fundraising idea to assist Central Oregon
families with non-medical living expenses while in treatment – fuel cards, grocery cards, rent and utility
The local garbage hauling companies
enclosed purple envelopes
with their April billing, asking every household and business to
$1. They raised over $13,000 in their first fundraising efforts
in 2009 and are now gearing up for the 2010 campaign -
appropriately named CAN Cancer.
arranged for the white and purple garbage truck to make its
debut at today’s
planning meeting. The photos don’t
do it justice
really quite a classy job!
Stu Martinez with one of his drivers and a very
classy purple and white garbage truck
So there you have it. More heroes in Central Oregon – the
Martinez family, the Central Oregon Garbage Haulers Association,
and a very classy garbage truck painted with purple detail!
of our friends
Our fearless leader was down and, instead of helping him up, we
were all laughing and pointing, and Gary was snapping away on his camera.
all, what are friends for?!)
Fearless leader fallen ... and the rest of the crew
Central Oregon boasts a remarkable community of survivors
and co-survivors who are involved in a variety of volunteer
efforts. Without guys like Mike Gibson—our
Jeff Scott, for example,
have our hiking, snow-shoeing and kayaking adventures. There
enough manpower in the St. Charles Cancer Services
department to do it all.
So many of our local survivors get it. They understand
that being in service to others makes the cancer journey that
much better for them. Gary and I are proud to know these
count them as our friends.
about signing up and showing up, about having fun together,
about drawing strength and inspiration from each other.
This is our cancer club; this is the caliber of our friends.
Someone handed in an evaluation sheet this week after watching
Gary Bonacker speak at our monthly
meeting. “It’s like seeing courage walking,” she wrote.
Lance Armstrong & Gary Bonacker
Gary, a friend of ours, is the co-owner of Sunnyside
Sports here in Bend. In the spring of 2003, after he
began having seizures, an MRI showed a Stage 2 tumor
in his brain about the size and shape of a Silly
The surgeon was able to
remove only half the tumor and Bonacker is on
anti-seizure medications. The side effects have
forced him to cut back to 15-20 hours a week in his
In October 2004,
Bonacker rode alongside Lance Armstrong in the Ride
for the Roses. The experience impressed him so
profoundly that he decided to stage a cycling event
to raise funds for cancer. It was dubbed
Tour des Chutes,
named after the river that flows through the middle
of our town.
The first event was held
in July 2005. Bonacker and his team of volunteers
expected 300 participants, but 750 riders showed up.
’05 Tour brought in a
little over $42,000, an unprecedented amount for a
first-year grass roots event in a town with a
population of 75,000.
Every year since then,
Bonacker has presented a sizeable check to help fund
the Survivorship Program at St. Charles.
L to r: Dr. Archie Bleyer; Peggy Carey,
Cancer Program Director; Gary Bonacker;
and Dwight Heaney, VP of Philanthropy
“There’s not a day in my
life that I don’t go into this deep, dark hole for a while,”
Gary once told me. “But having a great family, a great workplace
and friends, and having something like Tour des Chutes has
helped me so much.”
Bonacker attributes the success
of these cycling events to a terrific group of volunteers. His
volunteers attribute its success to the fact that people within the cancer and
cycling communities have rallied around a worthy cause and a
much-loved cancer warrior.
snow-capped mountains as a backdrop for
palm trees? (It might not look like much powder, but we were at
the top of Mount San Jacinto later that day in 4 feet of snow.)
Sunday, Feb 7,
Only in Southern California
we kept a camera handy all week or you would never believe what
Where else but in Southern California would you find an elephant
guarding a hillside ...
A short walk
from our hotel
into the town of Westchester, we discovered that if you can’t
catch a low-flying jumbo jet from Sepulveda Blvd, try
renting a Rolls.
Variety of transportation choices out of Westchester
Thursday, we drove
north along the coastline and had lunch outdoors at Gladstone’s
with the Pacific waves breaking beneath us. Best fish tacos I’ve
On the way back,
in the Venice Beach area for a walk along the sand and onto the
pier. A crew was setting up camera equipment, so we stepped into
a little alcove to be out of the way and watch the surfers (but
still keep an eye on the camera crew).
The girl with the headset who seemed to be giving a
lot of orders said we could stay where we were as long as we
didn’t take any photos using our flash.
Orlando Bloom walking through a scene
So there we were
– 15 feet from Orlando Bloom. Only we didn’t know
it was Orlando Bloom (which shows you we need to get
out more). Only in Southern California.
Back at the hotel, we sent photos to our four kids asking if they knew any of the
actors. Our daughter e-mailed back with envy: “Tourist!”
“Not tourist,” I replied. “Paparazzi!”
Plenty of time to catch our flight
So Gary drags me out of bed at 5:00 this morning
to catch the hotel shuttle to LAX in plenty of
time for a 7:30 flight home.
We print our
boarding passes, go to check one bag through,
and the guy at the counter says,
know this flight leaves at 7:30pm, right?”
saying is, good thing Gary got me up at 5:00am to make
our 7:30pm flight.
We had the privilege of meeting Dr. Arash Asher this
week. He is the
Director of Survivorship at the Cedars-Sinai Oschin
Cancer Institute and is enthusiastic
about growing a strong cancer survivorship program. We had finalized
the date and
time of our presentation on the Friday before we left for LA, and by
Tuesday, Dr. Asher and his staff (Nancy, a dynamo
staff of one!) had managed to gather a sizeable group
on short notice.
- site of Tues presentation
Yamashiro - lovely landscaping and city views
After the presentation and since we were in the
neighborhood, we ate at Yamashiro, a restaurant
recommended by our daughter-in-law featuring
CalAsian cuisine set high in the Hollywood Hills.
The food was delicious and reasonably priced; the
service was great; and the views included beautiful
hillside landscaping overlooking a gorgeous sunset.
Yesterday, we drove out to Cathedral City to speak
to a group of survivors at Gilda’s Club. Although a
different look and feel than their Manhattan
flagship, it carries the same lovely concept of
offering support to cancer survivors in warm, inviting spaces. This particular clubhouse was
founded by a local resident whose wife had cancer.
He got together with a group of friends and raised
the funds to build and staff the clubhouse.
Gilda’s Club in Cathedral City - different look than
the Manhattan flagship; same great concept
We had never been in the Palm Springs area before, so were
amazed at this beautiful oasis
with green grass and palm trees surrounded by tall rugged hills
that grow straight up out of the desert floor.
After our presentation, we took the aerial tram (world’s
largest rotating tram cars)
to the Mount San Jacinto
State Park & Wilderness – 8,500’ above Palm Springs –
with the intent of hiking one of the trails. As it
turned out, there was 4’ of snow at the top with
only the nearby sidewalks cleared and we weren’t
dressed warmly enough to go snow-shoeing (you can
rent their equipment).
lunch at 8,500 feet
What’s amazing about Southern California is there are so many
diverse cultures and communities within a few short hours of
each other – sometimes within a few short blocks of each other.
Cathedral City is a laid-back
retirement community generously caring for its own
cancer survivor residents.
Nearby Mount San Jacinto State
Park and Wilderness, at the top of the Palm Springs
aerial tramline, appeals to tourists and outdoor
enthusiasts with its 54 miles of hiking trails and
remote camp sites.
ride to the Mount San Jacinto State Park
Yamashiro, the CalAsian hillside
restaurant, has its own fascinating history, having witnessed “the
birth of the film industry, the glamour of Hollywood’s Golden
Age, the difficult times of war with Japan, and the current
period of intense interest in Eastern cultures.”
And Cedars-Sinai, an institution going about the business of
research and treatment, has a wonderful young doctor at the helm
of Survivorship endeavoring to help patients live as well as
possible during and after cancer.
Back at the hotel, we get this e-mail note from one of the
oncology nurses at Cedars-Sinai:
was taking care of a patient today whose husband noticed your
flyer in the coffee room. He snuck away while his wife was
getting her treatment to attend your seminar. I just wanted to
let you know that he returned to his wife’s room and spoke
nothing but good things about your talk. You were very helpful
Amazing how a few simple words help confirm that what we hope to
do full-time is truly of value.
Tuesday, Feb 2,
Cream of the crop
We left our Los Angeles hotel in plenty of time to make it to
The Wellness Community in Santa Monica yesterday morning. An
hour and a half later – after asking four different people for
directions and a frantic phone call to TWC office – we found
It’s not that we’re directionally challenged; it’s that
MapQuest had us
turn right on Washington Blvd instead of left – so we were
wandering all over the east side of the 405 in the Culver City
area looking for streets that weren’t there.
Lessons learned: Keep to the freeways. Just because MapQuest
thinks it knows a shorter route through surface streets, don’t
believe it. (I
can hear our daughter now: “Mom, if you and Dad would just join the
21st century and get an iPhone with GPS …”)
Making up for it yesterday afternoon, we arrived an hour early
to speak to a group of nursing students at Goldenwest College in
Huntington Beach. We found the building, found a parking spot …
and then decided we really didn’t want to sit in the parking lot
until time to go in. So we cruised the neighborhood looking for
a Starbux just in case we needed to make a Chai tea run
following the presentation. (We did.)
The cream of the crop with their instructors at
We were told the nursing program at Goldenwest College accepts
66 students of the 800+ that apply
people are the cream of the crop.
Someone in the audience asks Gary about his experience with nurses. “I love
nurses,” he says.
Nurses are the face and personality of the hospital or clinic.
The doctor comes through and he’s all business and
knowledge. The nurses are the heart. They have
the opportunity to show compassion and be a
personal touch for the duration of the patient’s institutional
Gary and I admire these cream of the crop students who
have chosen such a high – and challenging – calling.
End of the tunnel
Disturbing the snow
Good things come to
American mobile family
Any excuse for a date
Much more than a sports flick
All the facts are true
Going to Hawaii
Finding our own way
It's just a number
Seasons of Christmas
Civil War in the CTC
My life in France
Empty cafeteria trays
A few of my favorite things
America’s best and brightest
Large amounts of hope
Married to a very patient man
Trail to nowhere
Above the fray
Hot date spot
Red sock day
I got all my sisters with me
Tenacious like a bulldog
Best years of my life
Now we should live
Across the high desert
50 things to do before you
Summer past and random
Running to win
Far cry from canned chili &
Knight in shining armor
Roller coaster rides
Dan in Real Life
Gift of life
In the moment
Extended birthday present
Munch & Music
Dealing with the paparazzi
Behind red doors
Happy kind of exhausted
One of the benefits of cancer
Calm before the storm
Big picture thinking
Back to the real world
Quick trip to the EC
Flat Stanley in Ory-gun
Soaring on wings
Real men wear pink
Fun in the CTC
Live like you were dying
The power of one
Fun with the medical professionals
To my valentine
Moments in Jersey
Leaving on a
Welcome to life
Back in high school
Out of the mouths of babes
A merry little
Somewhere on purpose
Men and menopause
My Thanksgiving list
saved my life
The speed of a turtle
Cancer Adventures – the book
Blue and orange town
pleasures are the best
and kite flying
The new and relaxed Gary
Packing the essentials
One step at a
PSA count celebration
Frost in August
9:30am rock band
Grand for a reason
Survivorship is all the rage
Follow your dreams
Only in America
Unrelated goose incident
Friday night date
Tough day on the job
Light bulb moment
Testing the limits
The last lecture
Mother’s Day thoughts
Welcome to our world, Lydia
Cancer community – Part II
Homemade soup day
Mice and tumors
Waiting room magazines