Tag Archives: living a long time with stage IV lung cancer

Six oh

I am sixty. Six omg I can’t believe this is true.

The first thing I said when I got up this morning was ‘Linnea, it’s your birthday. You’re still alive. Not sure how you do it, but you do.’

Gotta say, I didn’t think I was going to have an opportunity to get old. And so far, I’m loving it.

However it is all very bittersweet. Yesterday I spent time with someone who I care very much for. Someone who is young–too young–and who is in the last stages of fighting this disease.

And that breaks my flipping heart.

We’ve made significant progress when it comes to the treatment of lung cancer. More of us are living longer. However, the majority of effective treatments are still targeted therapies that are classified as inhibitors. By definition, inhibition restrains or restricts. When you are talking about targeted therapies, inhibition is almost always temporary. Cancer is an incredibly wily bitch; it finds a way around.

And sadly, medical research doesn’t operate at quite the same speed as wildly mutating cells.

It’s all quite complicated, actually. Regulations, incentives, the sheer enormity of the problem. However, from the perspective of the patient, it is actually absolutely straight forward. We want to live. And far too many of us are still dying.

So yes, I am happy to have this opportunity to turn sixty. It is a reminder of far we have come. But also how far we have to go.

xo

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Sort of ridiculous, but my About on this site was some 4 1/2 years out of date.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.