Life is good good good; make that great.

What can I say? Twenty months of stability (my last scans were remarkably stable) and it’s starting to feel like a new normal. Dangerous perhaps, this recently acquired ability to relax. Come June I am moving into a different loft and I will be signing a THREE YEAR LEASE. Just words, I know, but heady ones for a girl who has spent the last eleven years imagining the future in three month increments, the time between scans!

I have been in survival mode for a long, long time but I’m starting to switch things up a bit—moving from survive to thrive. I’ve been hitting the art hard—most days I start painting around two or three in the afternoon and go until the light fades. And I’ve been pulling together The House of Redemption, my vintage clothing venture. The best part is neither of these things feels like work anymore—rather like purposeful play.

Self improvement is a central theme for me as of late. Apple is phasing out their one to one program but my subscription is good for another eight months and I’m using the heck out of it. I’ve been limping along on my computer for far too long now—really underutilizing so many of its functions. And then there are my sloppy personal habits, like the 33,000 (really) unopened emails—those have got to go.

Happy picture for a happy post: my cute and colorful college bound kid.

Happy picture for a happy post: my cute and colorful college bound kid.

I’m trying to get a grip on my finances, now that I’ve got some personal assets again post divorce. Last week I opened up a money market account and met with a free financial advisor at the bank—there is so much I don’t know but I am eager to learn. Peter’s got all his college applications in and I’ve spent the last two days working on his College Board financial aid applications and in the process have made a lot of headway on my tax return for 2015—something I have not done alone since I was married almost twenty five years ago.

Of course, I continue to exercise (walking, and soon yoga as well) and I am hoping that this is the year that I really become an inspired cook. I’m reading and writing a lot in in my free time (!) and learning how to play mahjong, japanese style, thanks to Koichiro and Machiko. Supposedly it helps with cognition so I am having fun but also exercising my brain.

The only thing missing is travel plans. I want to visit friends and family but also spend some time getting to know those people and parts of our planet that I am currently unacquainted with. Iceland, here I come!

 

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 <3 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.

IMG_6005

IMG_6010

IMG_6014

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.

The underscore

After reading the post about losing my friend Ginger, another friend of mine commented that ‘her long time in remission has to be a triumph of its own’. Well yes, absolutely. And it made me realize that I left out one of the most remarkable aspects of Ginger’s story. Just prior to her diagnosis, Ginger, recently divorced, had travelled to Israel and met the man who would become her second husband. Post diagnosis, she experienced almost a second lifetime, one very full of joy. When I met her she was recently widowed and embarking on yet another chapter.

Ginger’s life was inspirational/aspirational for me. And although the details differed, she provided me with a role model of what could be if I only had the courage to really go for it.

I’m not talking about cancer here, but rather my divorce. It’s not an experience that I’ve shared very much about but it was hands down one of the bravest things I’ve ever done.

When I tell people I am recently divorced they say they are sorry. Well, I’m not. It requires a lot of hope, faith and optimism to start over when you have cancer, but it was something that needed to happen and honestly, if I was strong enough to do this, I can do anything.

I gained so much from my friendship with Ginger and I shall miss her so, so much. My last email from her was a month ago and it sort of captures the essence of our friendship—a little bit of cancer, a whole lot of caring:

I saw you all over the Globe. Good article, but you are so much better in person! :-)
Good luck to Peter!
I went in for chemo yesterday and they sent me home- too weakened. But I will try to build myself up again. It’s partially the blasted antibiotic until next Sat. Just went down on the bicycle. Have to try.
Have you tried a dating site yet?
Much love back, g

____________ <3

 

This part’s really hard

When I was diagnosed with lung cancer I immediately understood that loss was going to play a big part in my life. What I didn’t understand was that it wouldn’t all be personal. You see, I never anticipated becoming close to so many others with cancer—it just wasn’t part of my initial game plan.

However, once I was restaged to IV I knew I couldn’t go it alone anymore and I began to seek out others with lung cancer. Not long after I also took my first steps into advocacy and before I knew it, I had a lot of friends who shared my diagnosis.

The upside to these relationships is obvious–no one knows better what it is like to have this disease than someone who is living with it. The downside is that cancer is a brutal and relentless foe and a lot of my friends haven’t made it.

Each time it’s a real punch in the heart.

Yesterday I learned that my dear friend Ginger Wyler Saunders had passed away. I met Ginger some years ago in the Whole Foods down the street from MGH. We were sitting across from each other at a crowded table during the busy lunch hour and all was chaos around us. She looked at me and said ‘We are the two quietest people here.’ With that we began to chat and I learned that she had also been diagnosed with lung cancer–twenty six years earlier. I think I asked her if I could touch her–I was so amazed to meet someone who had lived for such an extended period post diagnosis.

Anyway, we became pals. We emailed, met for lunch, and called occasionally as well. Sadly, Ginger was diagnosed with a second cancer; ovarian. She fought tenaciously but gained little ground. Yesterday her daughters let me know that she was gone. Today I sat at what I thought was perhaps the same table at Whole Foods. And I wept rather openly as I ate. I love you Ginger–cancer can’t take that.

Linnea and Ginger

Linnea and Ginger 3/11

Linnea live (I like the sound of that)

This video was recorded at the annual LUNGevity Hope Summit in 2014 and fits in perfectly with the theme of clinical trials. When I refer to starting a new trial, it is for PF-06463922 or lorlatanib (which has kept my cancer stable for 18 months now–woohoo!). I’m a little breathless and hoarse as my cancer was advancing again. I noticed immediately how fast I am speaking– markedly slowed speech has been a side effect of PF-06463922.

Slow, fast, hoarse or not, the most important message here is one of hope (thank you LUNGevity). When I mention going from cure to living longer I am talking about accepting the fact that I would never be cured. That’s a difficult concept to embrace but in order to make it even remotely acceptable I found I needed to replace cure with a potentially obtainable goal—becoming an outlier. At ten plus years (eleven, in April) I am there.

Secondly, the importance of options. When diagnosed in 2005, the first hurdle I hoped to jump was qualifying for surgery. I had nineteen lymph nodes and most of my left lung removed followed by four rounds of adjuvant chemo and yet my cancer returned almost immediately. Two strikes, and I’d been informed that treating lung cancer was basically three strikes and you’re out. My first clinical trial in 2008 was a long shot. I was thrilled beyond belief when I responded to crizotinib, but also understood that it represented a temporary fix and that there was nothing else out there once it stopped working.

Thankfully, that’s no longer true. Sadly, there aren’t viable options for everyone with lung cancer. Medical research got me to where I am today (alive!) but we can’t stop now.