I don’t even know where to start


I decided several days ago that I would no longer complain (as in, I’m over it). So I’ve been giving a lot of thought as to where a complaint ends and an explanation begins. If that makes sense.

Let me try to explain.

One definition of complaint is: Β ‘a statement that a situation is unsatisfactory or unacceptable’.

This has been a difficult (scratch that…sounds a little complaint-ish)—this has been a challenging year. Learning to live alone again, the death of my mother, our (ongoing) divorce, managing my cancer and the side effects of treatment.

However, (and this is why I am absolutely determined to abstain from whining/complaining), I am alive.

Remarkable, really. In fact, I am coming up on the ten year anniversary of my diagnosis with non-small cell lung cancer.

It’s been an amazing decade—packed with experiences I didn’t think I was going to have. I am beyond grateful.

However, you can’t be in treatment for cancer that long without a bit of collateral damage. I told Dr. Shaw some months ago that I felt like someone who had done a lot of hard drugs. Her response? “You are someone who has done a lot of hard drugs.”

Which brings me to my explanation (not complaint). Words don’t come as easily to me as they once did. I speak more slowly and I think more slowly as well. I have difficulty remembering things and impaired memory is now listed as a condition on my medical chart. The combination of forgetfulness and inability to focus means that it takes me much longer to accomplish even seemingly simple tasks.

So I have put off writing.

Really, it’s rather ridiculous. Writing is probably exactly the thing my brain needs most right now and goodness knows I’ve missed all of you. And besides, sometimes it’s just a matter of mindset. Oh man, I really need to update my blog and it’s stressing me out is switching it up to I’M ALIVE AND READY TO WRITE ANOTHER DAY!

IMG_0025

JUST SAY IT!

 

57 responses to “I don’t even know where to start

  1. So glad to receive a blog update! I know your year(s) have been challenging but focussing on your upcoming 10 year cancerversary – WOO-HOO!

    You rock Linnea…

    YSP

  2. You have been missed. I did a google search a few weeks ago to see if I could find a hint. Nothing was found. Congratulations on still being alive. My husband died a year ago in January of exactly what you have. He only lived a year from diagnosis. It was already in the brain by diagnosis.

  3. Welcome back, Linnea! Hard drugs, indeed, yet you are not the least bit impaired.
    Love you girl.
    xoxoxoxo
    J

  4. Three cheers for you, Lady! I’m happy to see you back to blogging after a very challenging year and I think you have the right to complain ( a bit), most of us couldn’t handle the stuff life has thrown at you. I understand the chemo brain, I swear I suffered from it when Steve was on chemo and he surely did. I remember whole conversations with gaps where words should have been. But we always understood each other anyway. I’m trying to adjust to living alone too. I’m not lonely, I enjoy it mostly, but I just miss him. Maybe in your case missing him isn’t an issue, of course! Stand Strong, Lady, you are a warrior.

  5. So good to hear from you again. You continue to be an inspiration to me! I totally understand the chemo brain thing. Carpe Deim Girl! That’s “seize the day”

  6. You don’t know me, but I’ve missed you . . . so glad to see you back! 10 years – what a spectacular anniversary.

  7. Go Linnea Go!!!
    We are so proud of you each and every day!!!
    Love you to the moon and back!
    ❀ Melinda & all the Lees

  8. My husband and I have been doing the same dance for almost 10 years. It isn’t easy but it is life. I love your blog posts and am rooting for you and with you!

    • Thank you Alissa. A dance it is! I could have never imagined my life as it is now, but I love it exactly like it is (imperfect but ongoing). Here’s to a decade!

  9. An inspiration to me, who just had lung surgery (still hurts after 6 weeks).

    • Mary, unfortunately that surgery is a bear. If it”s not been suggested yet, you might want to see about a bit of physical therapy—it made a world of difference for me.

  10. It’s great to read another post from you, Linnea. You have no idea how far reaching and impactful you are. I’m a fellow NSCLC patient of two and a half years (33 yr old non smoker), and you bring me so much hope. Thank you for blogging your experience and giving encouragement to the lung cancer community!

    • Thanks CK. I do need to remind myself of why I blog—and perhaps as I get back into the habit, the words will come more easily again. Keep on keeping on!

  11. I have checked in on you Linnea and I was so happy to see a post today. You don’t have to explain your reasons for not posting. You are among friends who don’t judge you, just worry about you when you are silent. Sometimes we need to go inward and sort out our feelings. Spring is coming. I sometimes hear the birds singing in the mornings and everything seems more optimistic. Ten years is a whole decade Linnea. Congratulations.

    • Beryl, although we haven’t (yet) met, your continued presence here means so very much to me. My window is open today to let in the sun, the ice is melting and yes, spring will come.

  12. Linnea- Just finding your blog in my inbox put a smile on my face. It is good to know that you are still kicking cancer to the curb. Still living your best life. Thank you for showing me the way!

  13. Good to hear from you. This is tough journey but I’m happy to hear you’re coming up on 10 years survival. We’re all blessed to have you in our lives.

  14. Missed you! So great to hear from you! I was trying to send a selfie back but too technically impaired! πŸ˜‰

    • Chrissy, I would have loved to have seen that selfie but I have no idea how that works with comments. One of these days!

  15. Kathleen Gereghty

    So good to hear from you. You can complain anytime your heart desires, you deserve it . Thinking of you.

  16. Linnea, congrats on realizing that taking that break is OK! Sometimes we just need the space. I do have to say as well thanks for the inspiration! (no pressure) your writings share the soul that is YOU. I am now year 5 of the same diagnosis. All I can say other than that is THANK-YOU. Your Information is empowering and sharing your life is inspiring.

    • Gwen, congrats on 5 years. I have taken the space I needed. Now that I’m back I will be moving more slowly, but that’s ok too.

  17. Your words are always perfect to me, Linnea. It’s wonderful to read them at any time that you are ready to write them!

  18. Glad to see this post. You are indeed a candle in the darkness for many of us out there with the same condition. We all understand your motives, or lack there of, and support you in every way. Stay strong!

  19. hi linnea, my wife was diagnosed with stage 4 nsclc back in 9/2014 and i’ve been reading about you since (your site, inspire and grace). congratulations and i’ve used you to motivate my wife so thank you! we live in the other side of you (ca) and saw dr. shaw back on 12/2014. obviously, it’s not possible for my wife to have dr. shaw as her doctor but we’re trying to see her every chance that we have. we’d love to meet with you (if that is ok) when we’re in boston or if you ever come out to the southern ca.

    • That’s great that you were able to meet with Dr. Shaw and to have her as a reference. I would love to meet with your wife and you if you travel again this way—or should I make my way out to Southern California again. So please stay in touch!

  20. Hey, I’m new at this – lung cancer, that is. Got my diagnosis in Jan 15, and I’ve been scouring the web for information, commiseration and any other kind of “ation” that may be helpful. Your blog is among the best “ations” I’ve found so far.

    Thanks!!!

    Jim Watson
    Portland, Maine
    http://www.stage4thinking.com

    • Jim, sorry that you have joined this ‘club’ but as you can see, there are lots of active members. It remains a miserable disease, but the possibilities for treatment are significantly more promising than they once were. Come April, I will mark 10 years since my original dx—something I once thought impossible (that I would still be here!). Best of luck to you!

  21. Frank Garofalo

    My journey of living WITH cancer started in January 2012 with a diagnosis of stage 3b
    Colon cancer. I had surgery two weeks later followed by 6 months of Chemo at the cancer center at St. Joseph’s hospital in Nashua. They declared me cancer free. CEA blood tests every 3 months. 14 months later my
    Oncologist tells me “you have Stage 4 Lung AND Liver cancer; you have an 80% chance of
    Living 2 years and a 2% chance of living 5 years!” After going nuts for a week, I calmed down. I decided to fight it with chemotherapy
    (Folfiri and Avastin). I have had 18 months of
    Infusions (36 and counting). The Good News is that my cancers have been STABLE now for a year (YAY)! Other than losing most of my hearing and 99% of the hair all over my body, I feel remarkably well and positive. I hope that we both can continue to celebrate many more cancerversaries !
    GOD bless!

    • Frank, sounds like you’ve been through it, but still here to tell the tale! I no longer pay any attention to the numbers—we are all individuals and our future cannot be predicted by percentage points. Hang in there!

  22. Inspirational post Linnea! Thanks for reminding me of the power that comes with being positive and not complaining. There is definitely always something to be grateful for!

  23. I’m so glad you posted again. I think you know it, but you’re quite the inspiration. Thank you for writing another day!

  24. Keep up the fight. And it is a fight….

  25. Hi! Thank you for your blog!!! It gives me hope! I was just recently diagnosed with stage 3 lung cancer at 43. Quite a shock! Just finished with my first round of 6 day chemo and have daily rad for 6.5 weeks as well. I found out this week my tumor is the ALK mutation. Anyways, thank- you for writing again!

  26. This is such a fantastic blog – I have been looking for a story such as yours for my patients with BAC – they need so much encouragement and by reading your posts they will get this.Thank you so much for sharing your lfe with this cancer .Surgery plays a role sometimes and I have been involved with that – and several of my patients asked me if there were any books written on going through lung cancer treatments.At the time,there were not many,so I asked several of them to write their stories and I compiled them into a small book.I can see that there are many people looking for as much information as they can get,by coming to your site,and they may be interested to read these stories – it’s available from http://www.hellohealth.com.au One again may I wish you all the very best of success with treatments you require and thank you,on behalf of my patients,for writing your blog which truly is an inspiration,Peter

  27. Dear Linnea, I’ve been following your blog since my Mom was diagnosed with lung cancer 4+ years ago. She’s been kicking butt ever since and you have been such an inspiration to me these last few years. I too worry about you when you are absent but of course can respect your need for alone time. Just wanted you to know you are thought of and cared about … wishing you all the best.
    xoxo

  28. So glad you are planning to continue writing. You are an inspiration! Look forward to reading your new posts.

  29. Dear Linnea,
    I hope you’re doing well. I pray that you’re enjoying life. Please update soon, we miss you.

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