Cancer Adventures

The purpose of this blog is to highlight the everyday life of a family going through cancer. We're aware that every diagnosis carries a different challenge and that we can only share our perspective on what it's like to live with a slow-growing cancer that has metastasized. Our hope is that you'll come back to visit often!

Sunday, Feb 28, 2010

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 grandchildren.

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 place?!”

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!

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Sunday, Feb 21, 2010

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 El Niño.

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 Marquam Hill

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 bookstore.


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!

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Thursday, Feb 17, 2010

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. Twice.

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 assistance.

The local garbage hauling companies enclosed purple envelopes with their April billing, asking every household and business to “pitch in” $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.

Stu Martinez arranged for the white and purple garbage truck to make its debut at today’s planning meeting. The photos don’t do it justice – it’s 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!

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Saturday, Feb 13, 2010

Caliber 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. (After all, what are friends for?!)


Fearless leader fallen ... and the rest of the crew so helpful

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 fallen-in-the-snow leader—and Jeff Scott, for example, we wouldn’t have our hiking, snow-shoeing and kayaking adventures. There just isn’t 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 people and count them as our friends.

It’s 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.

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Thursday, Feb 11, 2010

Courage walking

Someone handed in an evaluation sheet this week after watching Gary Bonacker speak at our monthly DEFEAT Cancer 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 Putty egg.

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 store.

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.

The ’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.

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... and 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, 2010

Only in Southern California

Glad we kept a camera handy all week or you would never believe what we saw. 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

On 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 ever eaten.

On the way back, we stopped 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!”

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Saturday, Feb 6, 2010

Plenty of time to catch our flight

Well trained

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, “You know this flight leaves at 7:30pm, right?”

All I’m saying is, good thing Gary got me up at 5:00am to make our 7:30pm flight.

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Thursday, Feb 4, 2010

Diversity

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.	Cedars-Sinai - 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).

Leisurely 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.

6,000’ 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:

“I 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 to him.”

Amazing how a few simple words help confirm that what we hope to do full-time is truly of value.

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Tuesday, Feb 2, 2010

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 our way.

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 21^st 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.)

Goldenwest College

The cream of the crop with their instructors at Goldenwest College

We were told the nursing program at Goldenwest College accepts 66 students of the 800+ that apply each year, so these young 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 experience. Priceless.

Gary and I admire these cream of the crop students who have chosen such a high – and challenging – calling.

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