Monthly Archives: January 2016

Whose minding me now

Oy vey. Yesterday I cleaned out the back of my car and found an unopened Christmas gift. To me. Signed with ❤ Me. And I have no idea who Me is.

My memory has suffered some very big hits in the past few years. What heavy drugs (platinum chemotherapy) didn’t take, my current therapy—designed to cross the blood brain barrier—has.

At first it was beyond distressing, this wiping of my memory. I am someone who always tries to look at the bright side and if there is a bright side to cognitive challenges it might be that you view the world in a more child like way again. Everything is fresh, if you will. For an artist that can be a good thing, and I think it was maybe useful to leave some baggage behind at a time in my life when I was starting over.

Gradually many of my memories are returning, but as they went missing for so long my relationship to them is not as solid as I would like it to be. When I try to recall something often parts are missing and I’m just not certain about the details. It’s really frustrating and sometimes very sad. But It is what it is. I am alive and well and making new memories.

Dammit Doll

Back to my gift. Inside was a funny little Doll with this written on it’s chest: WHENEVER THINGS DON’T GO SO WELL, AND YOU WANT TO HIT THE WALL AND YELL, HERE’S A LITTLE DAMMIT DOLL, THAT YOU CAN’T DO WITHOUT. JUST GRASP IT FIRMLY BY THE LEGS AND FIND A PLACE TO SLAM IT. AND AS YOU WHACK THE STUFFING OUT YELL “DAMMIT! DAMMIT! DAMMIT!”

And as if that weren’t enough to make it all better, there were also two boxes of bandaids. One with big girl pants on them and the other with smiley faces and positive affirmations. Someone is looking out for me—now just help me remember how/who/where my lovely gift came from!

 

About time

Sort of ridiculous, but my About on this site was some 4 1/2 years out of date. Whoa, good problem to have, rewriting Abouts. So, it’s been freshened up a bit. About time I might say. Little preview here (to save you from having to push that About button):

Time for a new About! The last one had me six and 1/2 years out from diagnosis, on crizotinib (Xalkori) and happily married. So much water under the bridge since then, my friends!

So, updated version. I was Linnea Duff, but I’ve been divorced since 9/1/15 and have reclaimed my birth name, Linnea Olson. I am now 56 flipping years old–old enough to qualify for a senior’s discount at Salvation Army and Saver’s thrift stores. And I couldn’t be happier. Old age is not a problem, it’s the goal!

Crizotinib bought me close to three years, but in the time since I spent 18 months on trial for ceritinib (Zykadia—where do they get these names?), returned to chemotherapy (carboplatin and pemetrexed), took a breather, returned to crizotinib and then in May of 2014, started my third phase I clinical trial for lorlatinib. Despite having acquired some secondary mutations along the way–S1206Y and G1202R–I have had both a positive and sustained response to my third ALK inhibitor.

In April, it will have been eleven years since I was diagnosed. My three kids are all adults now, at ages 31, 30 and 18. The youngest, who is in the college application process, wants to be a cancer researcher. Mama couldn’t be prouder.

And me? Living in a renovated mill in Lowell Massachusetts in a community of artists. I am once again a practicing artist and also sell vintage clothing on the side (The House of Redemption). I continue to devote a fair amount of time to lung cancer advocacy and in addition to my blog here, I write for CUREtoday.

Best news of all? I feel great, absolutely fabulous.

And I think I’ll hang onto the video—even though it is out of date. It just makes me SO happy.

By its cover

2016 began rather inauspiciously at a Great Gatsby themed New Year’s Ball. Held in a gorgeous old church, the night looked very promising. However the venue was poorly heat, the drinks insipid and the music far too loud. My grumpiness just made me feel old–not how I wanted to ring in a new year. We left a few minutes prior to midnight and when home I collapsed on the couch with my laptop. I intended to check a few emails before heading to bed but somehow got sucked into a site with before and after plastic surgery photos. Before too long I was looking at photos of Courtney Love. From bad to worse!

Fortunately I had some solid plans for the following day as I was preparing a meal for seven close friends. I’m still a little rusty when it comes to cooking and entertaining–my time management skills are way off–but I dove right in. When it comes to socializing, dinner parties are my absolute favorite. There is something about a table that is a great equalizer as conversation seems to both flow and include all.

I received a number of wonderful gifts that evening in addition to the company of dear friends. A beautiful centerpiece, a patron saint (never can get enough of those), the promise of some art (again, never enough). And a special gift from my friends Machiko and Koichiro; wrapped in indigo cloth. Tucked inside were two little wooden boxes filled with chocolate candy made by Machiko. Underneath that was another package which when opened revealed an onionskin envelope containing some mat board that had a little window cut in the center with a red tongue of paper attached–it reminded me of the advent calendars of my youth. Koichiro instructed me to open the little window and inside was a perfect, tiny platinum print of one his extraordinary photographs. I was so touched and shared with him that just the day before I had thought to myself that one day I would own a Koichiro Kurita (he is an amazing artist collected worldwide, with a photo in the Tate Museum in London). Now my year was looking up.

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This past week I made a point of engaging in all of the activities I wish to focus on in 2016. I roasted a chicken and later made soup; today I will bake some homemade granola. I walked, read, took and edited photos. I opened an instagram account–you can find me under linnoline. I ordered some canvas as I am all set to start painting again (yes!). I wrote (Click here for my latest post for CURE), made plans to get together with some of my lung cancer peeps, and began preparation for my next advocacy venture (DC in March with the American Lung Association). I participated in open studios with my vintage clothing shop–soon I will have an instagram account for that as well. On my to do list–yoga and maybe a gym membership–I’m not going to take this cancer thing lying down.

But back to covers–a highly anticipated book is about to be released–When Breath Becomes Air by Paul Kalanithi. Dr. Kalanithi was a young neurosurgeon with a gift for words who sadly contracted lung cancer. In the months after his diagnosis he devoted a great deal of time to working on his autobiography. After Paul passed away his wife Lucy, a physician as well, helped bring his book to completion. She also penned a poignant essay about love and grief for the New York Times that brought me to my knees. It is uncommon to have the perspective of patient and physician in one telling, and although I am certain it is going to be a really difficult book to read, I plan to do so.