And a few more salient details

I am exhausted. Spent, if you will. Therefore today’s blog is a cut and paste–taken from a message I sent out to my siblings and some close friends.

Another update. Not the kind I like to give. I hadad scans and saw both of my oncologists today. In short, it is still a shitshow in my left lung. Pleural effusion, partial collapse, possible pneumonia and a super aggressive cancer (Alice compared scans that were eight days apart and it had grown). And, unfortunately, my fever returned today–still low grade but not a good sign.

Β 
Next week I shall have a drain installed in my left lung and on the same day, I shall start back on the same drug that likely caused the pleural effusion–TNO-155–at a lower dose and with the hope that if my lung blows up again, we can control it with the drain.


My oncologist applied for (and received) compassionate use for the 4th gen ALK inhibitor that I had been precluded from (due to too many prior treatments)–TPX-0131. This is a great scenario as she gets to write the protocol. However, with paperwork it will be four to five weeks until I can start. Our goal–bluntly put—is to try to keep me alive that long.

Β 
This is brutal, I know. However, I thought it best to let you all know. If things don’t change course, I am wrapping it all up and sooner than I expected.


Please know how much I love you all and also that I am going to continue to fight like hell. I just need a miracle πŸ™‚ And–an ask–please look after my kids. They are having a really tough time–Peter told me tonight he is barely holding it together. In the end, it doesn’t matter how much time you’ve had to prepare. None of us are ready.

xo

28 responses to “And a few more salient details

  1. Marie Hazelton

    πŸ’–πŸ’–πŸ’–πŸ’–πŸ™πŸ™πŸ™πŸ™

  2. Sending you my love. Since we first met about 10 years ago, I knew you were a special person. I think that was one of Cory’s first TV jobs, it might have been after graduating from high school and before he started college at RISD. Your life perspective has been touching for both of us, right from the start. Personally, I think you are one of the coolest chicks I’ve ever known. (Yup, I called you a chick. Certainly a term of endearment.) I’ve had a wonderful last couple of years despite this Cover shit, with two granddaughters born, now growing like weeds. Temper this with the recent loss of my brother, and it fully demonstrates life’s swings. through thick and thin, you have been an inspiration for so many. Hang in there, and if it means anything, I love you. And I don’t throw that term around to very many.

  3. I read your posts as soon as they appear in my email. But these last two were pretty tough. Mainly because you are so damn honest and straightforward. If anyone deserves a miracle, it’s you. Just know that even from folks that are far from you and acquaintances you have fans and supporters and vibes being sent through the universe. You are strong and amazing. Defy.

  4. Linnea,

    Your strength has been mindblowing and your sharing of your story always leaves me in full on admiration for your ability to take on the truth while remaining hopeful yet realistic. You fight like a warrior goddess with such bravery and remain shining so very bright. I think of you daily and hold you in my thoughts and meditation and will remain doing so. Your children will carry your strength forward, I have no doubt, as difficult as this time is. Feel the love and light from all of us who care about you. You so inspire me. Love, Shirley Glines

  5. Sending you strength and love. The entire planet owes you a debt of gratitude for all of the trials you have participated in and for publicly documenting your experience. The good and the bad. Thank you, Linnea. No doubt that you will fight like hell. xx

  6. Yes Linnea, I will reach out to your kids and give all the comfort and support that I can. When you are ready, we will need their addresses. That said, I’m not giving up on you either!!!! I’m praying for that next miracle. YOU have EARNED a miracle. I love you. πŸ™πŸΌ

  7. Linnea if anyone deserves a miracle πŸ’«it’s you! I think of you often and hope that you climb this hill yet again. You have given so much to all of us fighting lung cancer.
    There are no words just the biggest debt of gratitude for all you’ve done and continue to do

    Gwen

  8. Sending love and positive energy your way

  9. Julie Edwards

    Hi Linnea. I never understood why my Neil couldn’t have the troublesome lung removed. I suppose there has to be a reason why they didn’t do that to you either? I understand and feel your exhaustion, pneumonia is a bitch. You are one amazing lady and the love and pride I feel for you cannot go unsaid.
    πŸ₯°

  10. I am praying hard for a miracle for you, Linnea. We’ve never met but I’ve followed your blog ever since I first read about your story online so many years ago. I admire your strength, your artistic talent and your wonderful way with words. Sending my love from Nevada….to you and your children.

  11. You have opened the path for us all to follow with open eyes. Thanks for this gift Linnea. πŸ™

    On Thu, Jul 15, 2021 at 10:24 PM life and breath: outliving lung cancer wrote:

    > linnea11 posted: ” I am exhausted. Spent, if you will. Therefore today’s > blog is a cut and paste–taken from a message I sent out to my siblings and > some close friends. Another update. Not the kind I like to give. I hadad > scans and saw both of my oncologists today. In” >

  12. Thinking of you and sending very best thoughts during this difficult time xxx

  13. Linnea, you are, and always will be, a brilliant star. No fading for you. I love your brutal honesty and your fierce determination to live your life on your terms. I am in awe of you, of your energy, of your love of life and of those of us trying to live it. Sending you my love.

  14. You don’t know me. I stumbled across your blog a couple of years ago and have looked forward to your updates since. You inspire me with your brutal honesty, passion for life, tenacity, strength, courage and hope.
    May you receive all that you need to get through this. Sending love.

  15. You have an army of people behind you – thinking about you, praying for you, supporting you. Thank you for sharing so much of yourself with us physically, mentally, emotionally.

  16. Linnea, your kids will always have your love and your strength. Yeah, they’ll fall apart when the time comes, but they’ll pull back together for you and because you’ll always be a part of them. We’re never ready. But then, I believe we don’t never really leave. No matter when your body gives out, you, of all people, will live on and your incredible spirit will be present in all who know and love you. I do absolutely believe that. Sending my love.

  17. Karen Cunningham

    I do not know Janet, but I second her beautiful comment. You have given so much to so many people, Linnea. Your blog has been a source of hope and information for those of us also fighting this battle. You will live on and on and on. . .

  18. Sending you lotsa love Linnea. You have inspired us all with your determination. A miracle is what you deserve and we all hope you get it.

    Roy

  19. Linnea, I am always amazed and encouraged when I look at your tag cloud and see all the code names for drugs you were among the first to receive, many of which are now well known treatments with actual names. Hoping TPX-0131 turns out to be the next life extender, and rooting for you to continue to lead the way for all of us. Sending all my best wishes.

  20. Beth Thomerson

    When there are no words, there’s always love – and hopes for the miracles you deserve so much.

  21. Sending you lots of prayers. You are an inspiration to us all. Sounds like you have the very best of family and friends. Hang in there!

  22. No words Linnea. Sending you virtual hugs and lots of good JUJU. Hoping for that 4-5 weeks to get the ALK drug. You’re kids will be in my thoughts as well. I lost my mom 20 years ago so I know how it feels. She was my best friend. I still miss her and think of her every day!

  23. Trisha Scirone

    I am so sorry you’re going thru this!! I have been following you since my mom was diagnosed in 2009. She passed last August and I have to let you know that you have been a shining beacon of strength through out my journey with her. My prayers are with you and your family (I completely relate to your son’s feelings) and send much love to you and yours. Keep fighting the fight!! Know you are very loved!! Xoxo

  24. Patti Helfand

    Thank you for your strength in fighting this awful disease and sharing and giving to so many. Peace for you.

  25. Mary Wasserman

    Dear Linnea – All of us owe you a great debt for your years of hope and optimism, wise encouragement, honest description of both your highest moments and your worst hours, and never-ending fightin’ words on this blog. (I’m also eternally grateful for your temporary loan of the Marvelous Alice. That was a huge gift I’ll never be able to repay.)
    You’ll make it to and through TPX-0131 the same way you’ve passed every prior test: with brave play-by-play accompanied by art, photography, and verbal flights of fancy. Those are your tools; and we’re all holding our breath, waiting to see what you’ll do with them.
    Please know we’re all with you, every step on the path. Love, maryw

  26. Libby Gallaher

    Dear Linnea – Thank you for all you have shared and taught. My understanding of my life- through yours- has been powerful Sending you lots of love. Your determination & strength are incredible . Hoping you get the
    miracles you need

  27. Mary Beth christianson

    Linnea
    I admire your strength and honesty
    I am praying for a miracle and for my
    Sister, newly dx with stage IV……
    I will be on my knees tonight asking God for both miracles .
    ❀️ Mary Beth

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