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!

Thursday, May 27, 2009

Back to the real world

We’re back from our whirlwind trip to the East Coast – a cross-country flight on Friday, presentations at a church in Princeton Saturday evening and three times on Sunday, a long flight home on Monday … and then up early Tuesday morning for work. So worth it.

It’s ironic how each time we speak, our intent is to be an encouragement to others … but in this case, we came away encouraged. So many kind and gracious people on the East Coast – people who said they’d be praying for us; people who reported their loved one lived a lot longer with cancer than the doctors said; a young MBA from Novartis who said he'd contact us about how his company may be able to use our survivorship message.

The frosting on the cake, of course, was the time spent with family – a Wii bowling tournament where Team Grandparents were soundly beaten by Team Grandkids; a picnic lunch and softball at Liberty State Park just across the Hudson from the Manhattan skyline (photo at left).

Delicious soup and bread at Panera; card games with the big kids; Lego towers for the little kid to knock down; and late-night conversations after the three munchkins were tucked into bed.

It would have been awfully hard to leave if we weren’t returning the week of June 22. We have appointments at Gilda’s Club and CancerCare.org in NYC; New Jersey Cancer Institute in New Brunswick; and the National Cancer Institute in Bethesda. And then we meet Josh Sommer and his mother, Dr. Simone Sommer, at their Chordoma Foundation event, also in Bethesda … but more about all that later.

Meanwhile, back to the real world of catching up with laundry, the busy event season at work, and moving forward with scheduling appointments (we hope to be in Seattle in August; Denver and Boise in September; Chicago in October).

Ah, for more hours in a day.

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Friday, May 22, 2009

Quick trip to the East Coast

On Tuesday afternoon we get a call from New Jersey – can we come and speak, interview style, in four services (one on Saturday evening; three on Sunday morning) at a church in Princeton?

Gary, the pessimist who masquerades as a realist, doesn’t see how that could work out. Airline tickets at short notice from coast to coast over a holiday weekend – outrageous. Asking for time off on short notice – not going to happen. Missing the annual Johnson family reunion – they would never speak to us again.

But tickets were reasonable, the flight connections were good, and both our bosses approved the time off. Various family members have e-mailed and called to give us a bad time, but really to say they will miss us and certainly understand our taking advantage of the opportunity.

And so we’re leaving on a jet plane in a couple hours. We have the interview questions in hand and will get to make the point that life will have its challenges but our choices oftentimes determine our quality of life. We can focus inward – full of self-pity and bitterness – or outward in compassionate service to others. As Gary likes to say, “If we have cancer, how can we use our experience to benefit others?”

I love that my husband/best friend is flying with me this time. And I’m excited that we get to see the grandkids, (oh, and their parents too!) even if only for a short time. Lydia was 2 months old when Gary saw her last and now she’s a grown-up one year old. The older two grandkids haven’t been told that we’re coming. I love surprises!

Happy Memorial Day weekend!

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Sunday, May 17, 2009

Audacious living

We presented to a group of college students in a Medical Ethics class this past week, which was fun. I enjoy these informal settings with good, interactive Q&A. The instructor, Jeff Cornett, was great to work with.

Yesterday we hiked up the Tam-a-lau Trail above Lake Billy Chinook with a group of cancer survivors and caregivers. From the top, we could see glorious mountain views stretching from Mt. Bachelor to Mt. St. Helens in Washington. One of the things I enjoy most about these hikes is the opportunity to get to know other folks within the cancer community. Yesterday’s hike did not disappoint.

But the most exciting, audacious thing we’ve done since I last posted is submit an application to a large foundation asking for enough funds to quit our day jobs. (Hey, if you don’t ask, you probably won’t receive.) Within 6 weeks we’ll know if we are declined or invited to submit a full grant.

Part of the application was a tentative budget … so, in an effort to determine the most economical way to travel cross country full time, we checked out pre-owned motor homes. We learned that if we wanted to live in a small space for a year without strangling each other, a 32-footer would be preferable, and certainly nothing smaller than a 24-footer!

And then we asked the salesman to let us know if he hears of anyone who wants to donate a motor home to a worthy cause for a write-off. Amazingly, he didn’t laugh at us, but took our card and said he’d keep his eyes and ears open. (Hey, if you don’t ask … )

So on this glorious sunny afternoon in May where the sounds of spring coming in the open windows makes one think that anything is possible, may we all live audaciously!

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Tuesday, May 05, 2009

Connecticut adventure

I just got back from a quick cross-country trip to Connecticut through New York from New Jersey via the Philly airport (it boggles this California girl’s mind how close these states are to each other!).

We held a pre-birthday celebration in honor of Lydia’s first birthday. She toddles around, happily jabbering to no one in particular … and cheerfully waves “bye-bye” from her daddy’s arms on her way to bed each night … and cheerfully waves “hello” first thing in the morning. Her older sister and brother, Lilly and Titus, are just as cute and clever and sweet.

So, the reason for the quick trip to the East Coast: I got e-mail from Kelly Turner, veteran police officer in New Haven, breast cancer survivor, and founder and CEO

of The CHAIN Fund that assists cancer patients with living expenses while undergoing treatments. Kelly was hosting a Hat Wearing Brunch, one of her annual fundraisers, and invited me to come for a book-signing.

Over a year ago, Gary found Kelly’s story online and I called for an interview. She is one of the featured heroes in my book, so of course I jumped at the opportunity to meet her in person. I recruited Summer to help at the book table and we took an early train from Princeton to Penn Station, and then from Grand Central out to Yale country.

Summer and Kelly

We were picked up in a hot rod by a 6’4” police officer, Phil, one of Kelly’s first partners on the street 18 years ago. Phil regaled us with stories about Kelly on the way to the country club in nearby Hamden.

The brunch was an amazing event with live jazz, a guest comedian who had us almost rolling on the floor with his “white people” jokes, survivor testimonials, raffle prizes and a fashion show.

I loved the camaraderie in the room. I think cancer does that to you. In addition to establishing an organization that provides much-needed assistance, Kelly has created a strong sense of community. I met a young woman at our book table who recently underwent surgery and just began chemo treatments for breast cancer. New to cancer, new to The CHAIN Fund, her first time at the Hat Wearing Brunch, she whole-heartedly agreed with me: “If you have to have cancer, this is a great community to have it in.”

Yale has linked its name to The CHAIN Fund, and Kelly is expanding to other states because of the number of requests she receives from across the country. She does all this, I might add, while working full-time as an instructor at the police academy.

So of course the visit with family was too short … and I would have liked more time to connect with these wonderful people from The CHAIN Fund … and the flight was way too long. But what a terrific Connecticut adventure!

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