The night before last I wakened in the wee, wee hours and couldn’t fall back to sleep. I lay there thinking about all the things I wanted to do and how long it might take to accomplish them all. I thought to myself “I need another thirty years”. As I was thinking this I turned my head to look out the tall windows adjacent to my bed and at that moment a shooting star streaked across the night sky.
Boom—as my kids might say. There and then I decided it was an affirmation. In the past decade I have sometimes measured my life span in months. At my most optimistic I plan perhaps two years out; in the absence of an effective therapy and at the rate my cancer seems to grow, that might be a reasonable projection.
Denial has never been my style. And yet…I am also a bit of a dreamer and I believe in the power of a positive attitude. To wit—when first diagnosed with lung cancer I understood only too well the odds that I faced with an overall five year survival statistic of 16%. When you are stage IV, as I am, that statistic drops to a dismal 4%. I have helped myself deal with this reality by picturing a bell curve—in my mind’s eye I am waaaaay out on the end.
In reality I have achieved outlier status; living well beyond my ‘expiration date’. However, due to the pernicious nature of my disease I am unable to relax. As I once said to a friend whose cancer had taken a turn for the worse, sometimes the thing that’s trying to kill you just keeps on trying.
Two nights ago a shooting star gave me the courage (abandon?) to allow myself to believe that I could live another thirty years. I mean, what’s the harm? Suddenly my future stretched before me like a Texas highway—almost endless.
It’s a view that I could look at, well…forever.
life and breath: outliving lung cancer 
Dear Linnea, Shooting stars never lie!
Lavendar—good!
Linnea
thank you for this entry! I have been living 6 months at a time and I needed to hear this.
Susan, it is hard to get beyond that apportioning. However, time to throw caution to the wind!
Linnea
Thank you Linnea. I am a five year lung cancer survivor. Never smoke-a tumor in each lung found on calcium scoring test. Anyway after surgery, chemo, radiation- four years of thinking I just might beat that dragon , it came back-again one in each Iung. I like to do thing in tandem😊
I go back for scans I one month (MDAnderson). And new course of treatment. I have a question. Has your cancer been confined to the lungs?
Mary, it has—I have invasive mucinous adenocarcinoma which stays confined to the lungs. When you were diagnosed originally did they test you for mutations? If not, they should now.
Linnea
Linnea,
I have said this before and I will say it again. You are a candle in the darkness for many of us batteling the beast. I am a 2 yr survivor of ALK+ lung cancer and am scared because the 3rd yr is the big drop in survival rates. But reading your story gives me hope that it is possible to survive and I cant go on living like the end is on the horizon. Thank you for that. And my boys (2yrs and 4 yrs) thank you too.
Dear Rob, I wonder what you mean by the 3rd yr. is the big drop in survival rates. I’m stage IIIA ALK+ and am 3 1/2 years out. NED with no treatment after 2012. My oncologist said my recurrence rate went way down since I passed 3 years. Just wondering!!! Maybe I am misunderstanding.
And Dear Linnea: Loved this post! At times I feel quite silly to think of me in decades (I’m 47 now), but it does help. We can ALL hope!
Amanda, numbers are a funny thing—I have now had lung cancer for almost 20% of my life. Sometimes it is best to ignore them (numbers) but I like the sound of decades 🙂
Linnea
Rob, as difficult as it is not to worry, that is really not how we want to spend our (precious) time. Hang in there and know that it’s a good time to be ALK+—-quite a few options for treatment and for me options = hope. Now go hug those boys.
Linnea
So beautifully put! And with the new breakthroughs, the sky is the limit.
Thank you! My fingers remain crossed.
Linnea
You are a wonderful writer. I read every word when it’s from you. It’s a gift you have, that you share with us, the readers. Thank you!
I first followed you because of your ties & references to Marfa, TX. Do you ever get back there? I went to Marfa for the first time ever this past April. I had read about and researched Marfa for about 10 years but never had gone there. Went for a short visit, on a slow day (just the way I like it) and I plan to go back again.
Kristen, thank you and that is cool that you went to Marfa! I am going for what might be the final time in a few weeks (I lost my half of our house in Marfa to the divorce). I am looking forward to it, although it will be bittersweet. And of course, nothing is stopping me from going and staying in a hotel!
Linnea
Linnea,
You are a gifted writer & an inspiration to all. I’ve have told your story to many people. I say I’m on “Linnea time”. I am hopeful & looking at my life in years. You give us hope Linnea. Keep writing & sharing your hope, faith & courage!
Thank you Katie—and keep thinking years!
Linnea
Dearest Linnea,
If anyone were to be able to pull off another 30 years, it would be you!
You are the shooting star!
Blessings to you!
Tracy
Tracy, it is a fitting metaphor as when my time comes, I intend to flame out!
Linnea
Once again, you leave me breathless with your eloquence, determination and unending spirit. Your words are just what so many of us need to hear. NO ONE has an expiration date stamped on the bottom of their feet. I agree – a shooting star is a definite positive omen to embrace.
Jo
Thank you Jo. And it is true that no one can write our future—we have nothing to lose by imagining whatever we wish!
Linnea
Linnea, What a very nice post. Yes….your future is there for you to live to the fullest and that you are doing. Some one is in that 4% and obviously, you are one who is there and have far exceeded it. So, 30 more? Yes, yes, yes……keep on keeping on.
Cheryl, that’s a very good observation (about the 4%). We should all imagine ourselves exceptional!
Linnea
You are the shining star! Shine on bright, as you always have and will.
Thank you 🙂
Linnea
You are such a beautiful writer. Thank you
Thank you Betsey.
Linnea
It’s just so great to see these two beautiful posts. And you have found the perfect metaphor, too, for hope and for your shining spirit. Not to mention — how did you put it — let me check — Yeah! That when your time comes, you intend to flame out! You know it! But here’s to thirty more years first.
So excited about seeing you in your new home in September, too!
Cristina, I am SO looking forward to your visit. xo
Linnea
Thank you Linnea for such a beautiful passage – you are a rare and precious meteor in all our skies! Thinking of you… xxxLiz
Ah, thanks Liz!
Linnea
Ah that’s a sweet move Linnea. You’re taking that old self-fulfilling prophecy and flipping it upside down.
And I’ve just happened upon a bunch of unread comments—I am working on my moves!
Linnea
Absolutely brilliant! Have stage 3 lung cancer so I ‘felt ‘ every word!
Brave wonderful woman! You have encouraged me so much! Thank you x
Thank you Jane! (I am late to seeing these comments).
Linnea
I too, Stage IV, find it hard to relax. My scars and treatment side effects are a constant reminder. I follow other Stage IVs like you with hope and inspiration.
In peace,
Kyle
Kyle, it gets easier with time.
Linnea
Hi Linnea…what an inspiration you are to all of us! I see myself way out at the end of that bell curve too: 7+ years living with Stage IV EGFR Lung Cancer. I’m alive and well! Positive attitude, supportive friends and family, and pioneers like you keep me going strong! Thank you for your beautiful thoughts and words.
fondly, Laurie
Hugs Laurie!
Linnea
Cheers to outliers!
It’s a beautiful word, isn’t it?
Linnea
Great insight and great writing, Linnea.
Thank you Luna!
Linnea
Linnea, I’m a very rational person who believes in good omens. Like when I found a gorgeous, huge four leaf clover just before starting the TIGER-X trial this spring. My first set of scans were good, and suddenly my body has kicked the side effects to the curb and I FEEL GREAT! I like the vision of being out on the right tail, may more and more of us find ourselves there. May you enjoy a perfectly beautiful day today.
I am late to respond Anita, but :)!
Linnea
Although I am not very active with the Inspire Community right now, I do continue to drop in and see what is going on after each of my Follow-up scans and Appointments. I make sure to always drop by and see what you are up to. Hence why you continue to inspire me. One of the first pieces of information I ever read that you wrote had to do with ignoring the numbers, it gave me confirmation that I was thinking the right way back in February 2012 when I began my journey.
Thank you and keep writing lady, we love your passion for life and living, you give many hope.
DH98 aka Steve H.
Thanks guys (I somehow missed all these comments back in August. I think I was driving half way cross the country at that moment!).
Linnea
I tweeted you but that word count really doesn’t do justice to what I wanted to say Linnea… I wrote a post this week called “Lung RFA Round 2 and the Power of Positive Role Models”. Although in the post I focused on my (other) close friend Phuong since the post was about surgery, I wanted to say that you also, as an incredibly positive role model, were very much on my mind while I was writing! I think of you often (and talk about you often!) as a model of Perseverance, Fighting Spirit and Hope in the continued march of new cancer drug discovery! You are also constantly on my mind as a major influence on why I started writing and the power of blog words in the cancer patient community. Thank you Linnea, although I know it wasn’t by design, to be a powerful positive role model in my life! In addition to Phuong, this one is also for you… YSP http://adventuresinlivingterminallyoptimistic.com/2015/08/18/lung-rfa-round-2-the-power-of-positive-role-models/
Hey YSP—I am late in this response as I have been most things this past year—my year of trying to catch up! Just keep up your own good work, you hear?
Linnea
Linnea I came across this song recently. It’s now my favourite song and it reminds me of you. I hope you enjoy it.
I love it Beryl 🙂
Linnea
Thank you so much for sharing your story! I was diagnosed in May at stage IV but I am participating in a trial that has yielded impressive results as of my scan just a few days ago. I know cancer will always be part of my life now but I, too, am interested in getting on with the living and I plan to let the dying take care of itself.
Becky, I normally don’t take this long to respond to comments but I somehow skipped over all of these—congrats on the positive scan and I think you’ve got exactly the right attitude—keep on keeping on.
Linnea
❤ You too!
Hi–I’ve followed you for a few years now…since my mom was diagnosed with stage IV lung cancer. Thank you for posting such detailed things about your various side effects and treatment lines. It has been so helpful to me. My mom now has extensive spread to the liver and is on maintenance pemetrexed….we’re hoping that will help keep things at bay for awhile. She is not feeling well on it at all and it’s getting us both down. Being able to see that other people reacted likewise is helpful. I can’t thank you enough. You’re in my thoughts a lot and I am always wishing the very best outcomes for you for the future.
I am weeks behind in responding but I hope your mom is finding some relief both from and on the pemetrexed (I find it less than tolerable as well). And thank you for the kind thoughts—always appreciated.
Linnea