Last night I drank half a bottle of wine and ate half a pint of ice cream for dinner. Had you been here, I would have offered you the other half(s). My sugar and grapes meal was a celebration, as yesterday I learned that my scans are still stable.
This felt like a big deal because the previous scan of my lungs had been flagged for possible progression. That was three months ago and I didn’t get anxious until the day before yesterday, when that old familiar feeling of dread hit me like a ton of bricks.
Back in the day I might have bounced this anxiety off of my spouse, but I am now more than four years into traveling solo. Although I am one tough mother, (and have a t-shirt that says as much) some days just being strong doesn’t quite cut it. Fortunately I have learned how to ask for help when needed and I put a plaintive plea for a group hug out on Facebook. And the love just started pouring in.
My friends–I’m not sure I could do this without you. The community that we have built online keeps me tethered and buoyed both. So say what you will about the evils of social media–it is a source of enormous support for this single lady.
As is my amazing oncologist, Dr. Shaw. Per that radiology report–she never trusts the read, but rather studies the scans herself with a magnifying glass. I simply could not be in better hands.
And for those keeping track, I’m coming up fast on a couple of important milestones. In April I mark thirteen (!) years since diagnosis. My youngest, who was only seven when I learned I had lung cancer, is going to be twenty-one on April 20. That I should live thirteen years post diagnosis–long enough to see all three of my children into adulthood is, well, mind blowing.
As is the fact that I’ve had the opportunity to build a new life for myself. This extended period of stability has allowed me to focus on something aside from cancer, and I have thrown myself into travel, art, my vintage clothing business and online dating. I also took a rather extended break from blogging, but am gearing up to start sharing all (well, not all 😉 ) the juicy details. Stay tuned.
life and breath: outliving lung cancer 
I couldn’t be more happy for you, L. Love love love
J
Thanks J. I am happy, happy, happy too 🙂
L
Linnea,
I am relatively new to your blog. I was diagnosed with Stage IV NSCLC, Adeno, EGFR, Exon 20 at the end of Aug 2017.
I have read your blog back over 5 years. It has given me hope and inspiration for my own fight so many times.
Thank you for continuing to share with us. Congratulations on stable scans!
Shelly
Thank you Shelly—and keep fighting the good fight! xo
Linnea
Oh Linnea. I am so happy for you. You are such an inspiration. I am into my eighth year of “survival” or should I say “PLCDL”- post
Lung cancer diagnosis living. Gotta think of something briefer 😀😀😀
My little opacities decided to grow a couple of years ago in both lungs. After surgery, chemo, and radiation early in this journey, I was actually NED for two years. Then the little pests returned,albeit growing slowly so far – actually too small to treat at this point.
Do you know if Dr Shaw is taking new patients? I am being treated at a top rated center in Houston, but in the last few years have been a bit unhappy with care. Oncologist is brilliant but it is almost like interacting with a robot when I do see him. I tried to change doctors but was talked out of it by social worker. She spoke with him, but nothing changed. It would be a stretch getting to Boston but we can do it.
Sorry for the diatribe. I didn’t mean to do it
So, so happy for you 👍👍
Mary
Mary, Dr. Shaw is always taking new patients and I cannot recommend her more highly. She simply is the best. And for your PLCDL, I prefer a variation on NED—NDY, for Not Dead Yet 🙂
xo Linnea
Hello Linnea,
So happy for you…I was thinking about you a lot recently and I am ecstatic that you are doing well!
Happy springtime 🙂
Thank you Christine and happy spring to you as well!
xo Linnea
I love great news as the news lately has been terrible. So glad you are doing so well. Many blessings to you and enjoy all your adventures.
Thank you Roy. There will always be bad news but there will always be good news as well.
xo Linnea
I am so happy for you Linnea. I agree totally that without this group I don’t know where I would be socially. I absolutely love everyone in this group and have so many sisters and brothers that I could never even imagine being in my life without social media. Sending you big hugs and can’t wait to see you at the Summit.
MaryAnn—we are all so much stronger because of the bonds we’ve made. It is the silver lining (yes, I said it) of this shitty disease. I am looking forward to getting a bunch of real hugs at the summit!
xo Linnea
Hi Linnea,
Wonderful news!!!!
My 30 year old daughter was diagnosed Aug last year at Stage 1V. She too is ALK. I’ve read all your old blogs avidly.
Love that you’ve come back to share this good news with us.
Xxxxxxxxxxx
Leslie, I hate it when kids (like your daughter) get diagnosed but I’m glad she is ALK+, as there are more treatment options–I wish her the very best. Thanks for introducing yourself.
xoxoLinnea
Keep up the great work. I am going into my 6th year of cancer free and am inspired by your words. Keep on staying healthy.
BAarbara, that’s amazing. You keep up the good work as well!
xoLinnea
Good for you! So glad
Thank you Anne!
xo Linnea
Linnea – that is wonderful news! You’re an inspiration to all of us.
Julie
Thank you Julie!
xo Linnea
Dear Linnea, I am following you since my husbands diagnosis july 2011 when we discovered he has LC adeno 43 never smoker. He is ALK like you and we both learnt so much from you. Since then I also founded the Israeli lung cancer foundation and even at one conference saw Dr. Shaw and wehn up to her to tell her I was following and inspired by your story. Big hug
Shani
Shani, thank you for introducing yourself. How very cool that you founded a foundation devoted to lung cancer in Israel! That’s some powerful advocacy. I hope your husband is doing well.
xo Linnea
Wonderful news! You give us all hope. I’m approaching year 8. Just welcomed grandchild #3. Never would have believed this at diagnosis. Now, if I can just get insurance to pay for my last PET scan!
Eight is fabulous as are three grandkids! Congratulations. And darn that insurance company–you don’t need that.
xo Linnea
So wonderful that my role-model MGH “sister” is doing strong. Glad I bumped into you yesterday, too!
Craig
Thank you Craig–and it was good seeing you–looking fabulous, my friend!
xo Linnea
This little survivors community can be amazingly supportive. It’s both who we are for one another, and who we are as repayment for our survival. I love that your scans turned out well, and I love that you are getting re-inspired to write again. We’re here.
Thank you Jim. I know you have so much on your own plate right now (well, always) but it is good of you to write. And yes, I know you’re there—It’s a wonderful thing.
xo Linnea
So glad to hear you are doing so well. I’ve been following you for six years. You are an inspiration to me. I look forward to reading about your adventures and insights. I’m off to get some ice cream and celebrate with you! Elizabeth
Elizabeth, so glad you could celebrate with me and that you introduced yourself. And I look forward to catching up on my doings—take good care.
xo Linnea
Hello Linnea, I am so happy to read your good news. I saw you had posted something, but postponed reading it, as it has been a bit of a stressful time with my husband Peter these last few weeks. We met you in November at 7B. Peter is in a combo Cobi/Alectinib trial with Dr. Shaw. We were just there this past Tuesday. Being that it was a no-scan visit, it was uneventful. March may be a different story. It was great to meet you. I hope we run into you again sometime.
Jon, I remember both of you and am sorry to hear that it’s been a stressful few weeks. I hope the upcoming scans provide reassurance. Take good care.
xo Linnea
My sister, Nancy, was just diagnosed 3 weeks ago and is having surgery Tues..Please keep her in your prayers!
Will do!
Linnea
Reblogged this on Rise To Survive Cancer and commented:
If you are looking for motivation & inspiration in Lung Cancer then allow me to introduce with you, one & only “Linnea Olson”!!
Hi Linnea,
It’s me, Sandrine from France…I read your good news…sorry for my late comment…
I’m happy to see you have celebrated this news.
I understand this was a very hard moment, because we live such moments too..
I find good to ask for help…We all need help in life..
The community that we have built helps us all.
I think it’s important to exchange experiences to know what exists to fight again this illness.
You are so lucky to have such an oncologist. The communication is so essential.
In this situation we have to understand a lot of thinks, for example, why this treatments, what their secondary effects are,….
We all hope that we can see our children grow.
I’m so happy to see that you have continued to progress despite this illness and that you have changed your life. It give us the courage to do the same. YOU ARE A FINE EXAMPLE…
Thank you to write Linnea…
Thank you Sandrine. Our community helps us fill those gaps that occur otherwise. I wish everyone could have someone like Dr. Shaw as their oncologist but we do our best to spread the news/hope amongst ourselves.
xo Linnea