Look what I found
I am once again a peer reviewer for the CDMRP (Congressionally Directed Medical Research Programs); specifically those pertaining to lung cancer. And yes, this part of the government is apparently still up and running even as ClinicalTrials.gov limps along with partial staff and a disclaimer; (which I swear got a little more upbeat as the week went on) they will update information as best they can. It’s an unnerving time for those of us who rely on clinical trials for survival, and according to this article in WIRED (thanks Janet!), the immediate impact extends beyond enrollment, as research itself is put on hold and sometimes (un)necessarily scuttled.
It is a daunting task, this peer reviewer stuff, and if I ever say yes again, I hope someone who cares will slap me. I say the same thing when I am holding a bag of cheetos—if I reach in one more time, take it from me and slap me. Some time back, Peter slapped me after my first bite. ‘What the hell?’ I asked—I guess the day before I had made my characteristic statement and I suppose he felt it still stood.
Anyway, I feel as if I’m making a small but important contribution, and perhaps in the process I will also expand my own understanding of lung cancer (get smarter). However, the amount of research I need to do just to understand the basic concepts in some of these proposals makes my brain feel like pudding, as well as underscoring the fact that I majored in art, not science.
About that image at the top. I ran into it while doing some of my research—I think I was looking for pie charts with the break-down of genetic mutations in NSCLC. As I scrolled down the page, I started noticing images of my lungs. And a little picture of me….and my grapefruit too.
I don’t know if I can explain how I felt, but it made me kind of weepy. I mean, here I am researching lung cancer and part of what I find is little anonymous pieces of me. More underscoring; I really do have this damned disease—and my connection to the subject I am researching is intensely personal. But then again, not….with 220,000 new cases in the US annually, I’m hardly alone. One piece in a really big puzzle; a puzzle I hope we someday solve.
But not if I don’t get back to work…..
life and breath: outliving lung cancer 
Linnea,
As I read your blog, I too am procrastinating … And continue to procrastinate … By focusing on your blog rather than work on my reviews. Thank you for reminding me that it is absolutely acceptable that, with my chosen vocation in finance, I find these reviews incredibly hard to understand, and spend more time researching than writing!
But we’re the ones with a specialized PHD that fully qualifies us to perform this honorable task… A Personal History of Disease. Thanks for doing this again this year… And for inspiring me while you procrastinate.
K
K, thank you for reminding me why I’m slogging through this stuff. Doesn’t make the comprehension any easier—and I’m assuming you also got additional proposals tacked on last week—which made procrastination suddenly a more serious mistake. I’m going to think of the scent of rosemary while I work ( 🙂 ).
L
You are an inspiration!! You radiate positive energy. I love reading your blogs.
Thank you Kathleen.
Linnea
It is sometimes surprising that we do suffer from this disease. While having so few side effects with Xalkori, I live a very near-to-normal every day life. I also realize that people who know me and my disease, find it hard to understand why I look and sound so healthy. And then, I do remember and find myself a little weepy also. But, I put on my big girl pants and think how blessed I am to have the medicine that allows me to live one more day, one more month, one more year. And then, I smile. Thanks for sharing your heart.
Roni, those good near-to-normal days are a huge blessing (thank you targeted therapies!) but it can all be rather confusing too. It’s actually a very stressful thing—-feeling good while knowing that it doesn’t represent a cure—-that it is ‘temporary’. And I believe it is a situation that is hard to understand unless you have also lived it. My way of saying, I’m right there with you (wearing my big girl panties too).
xoLinnea
Sounds like a really interesting job, actually, but I imagine the background work takes many hours. I know you’ll be diligent in reviewing. We’re in good hands!
Hey you, I tried to convince Craig that he was a natural for this task (alas, he was too busy trying to save the mutants of the world)—but YOU would also be most excellent. Next year? I have learned a lot, but for me this is quite a stretch. I’ll feel good when I have pushed the final submit button.
Linnea
Oh jeez, Girlfriend. Amen I say to you, enjoy those wicked Cheetos, which will cover you in that glow-in-the-dark orange dust, which will make you stand apart. As if you do not already. And if you are busted, so what? (I think I am channelling Guillermo- this is a good thing).
The political theater associated with this latest shutdown has been astounding and disappointing, and it will not get better. You will always have to fight the fight, as small as you (we, everybody) are, is. Doesn’t matter how. Cheetos may well be your weapon of choice!
I was thinking of Ezra today while I carved up the bike path with my aging legs.
See you soon.
Love,
J
You know Joan, after I published, I realized that Cheetos is really not a generic word for cheese puff. And that I haven’t had an actual Cheeto in years. Barbara’s Original Cheese Puffs are actually my sin. Which is not to imply that I am a food snob, as I still find a bag of Bugles hard to put down (and, just as I did in childhood, I place a Bugle over each fingertip—and eat them that way).
Channeling Guillermo is always a good thing—I miss our friend. And Ezra, dear Ezra—grace and tenacity.
See you soon!
L
Dear Linnea – I am just back from a trip to the UK and have been catching up on your posts. As always they are interesting and make me think. However now that you are “high maintenance” I would really like to see a photo with the eye brows along with the blond hair!
P.S. Guillermo was a bit “high maintenance” you know. Appearance is always important for those born in Bs.As. Nothing wrong with looking good.
Hi Linnea – I really enjoy following your blog. So much of what you say reflects my own feelings about having this disease. I’m only a year into it now. Thank you for sharing this information. I immediately went to the Lungevity website. It’s a great resource. You are in inspiration!
Elizabeth
Elizabeth, thank you and good luck on this journey. And hey, you’re obviously good at reading the fine print!
Linnea
Happy 11/11! 🙂
Clearly I’ve been traveling too much and have no idea what the date really is! Read the above comment next month please.
Kimmy, I knew exactly what you meant. And a month early is fine.
xoLinnea