And some piece of mind

I have scans again one week from today. Two days later I am to review them and to have another infusion. I already know that my new oncologist will not be able to meet with me that day—I believe she shall be in the ICU. Younger doctors are being asked to fill all sorts of roles now—previously she was on the COVID19 unit. I am sure they are receiving a phenomenal education but the stress must be extraordinary. And of course, it is hard for their cancer patients as well.

Given the gravity of my decision (yes) I decided that it was best to get in touch with Alice. Yesterday I sent her this message:

“Good morning. Scans a week from Tuesday and I won’t actually be seeing Jess so thought I’d discuss with you. I have been pretty flipping miserable for weeks now—physically and emotionally. Last night my mouth/throat/tongue were the worst yet. Unless those scans show some very compelling reason as to why to stay on this I am done. Done to the point that even if there is not a good next choice done. If I have six months to live I’d rather not be miserable. If there is a good chance the MEK inhibitor will have similar side effects than it is not the drug for me. Honestly I have been so depressed that at times I have been ready to call it quits all together. However, given the possibility of improvement while retaining quality of life, I could rally. So let’s discuss what that might or might not look like.

She responded immediately and then called me later. This next scan shall be telling but my mind is made up per suffering—if it is for naught, I am not on board.

Today was better—the discomfort remains great but knowing that I have drawn a line in the sand I feel safer somehow. Just as it is powerful to know one’s strengths it is also imperative to appreciate one’s limits.

I love life. So very much. But pain is incredibly demoralizing and I have made the choice that for me, not how I wish to spend the rest of my time here.

Fingers crossed that there is an easier option.

17 responses to “And some piece of mind

  1. coni herndon

    Sending healing vibes your way

  2. Linnea…..sometimes I don’t what to say but I get it. Sending all the love I have. Look up at the sky tonight & I will do the same. I’ll be sending you love thru the shining stars!

  3. Hello Linnea- I am new to having lung cancer and to your blog. No matter what stage your cancer is in, it truly sucks to have it during a worldwide pandemic. In the movies when people find out they have a month or a year to live they go on a life altering trip to somewhere exotic. We can’t even leave home for a milk run at the local grocery. I admire your attitude and I know that when I’m in the same place as you (and I know I’ll get there someday) that I will show some of the strength and courage that you have shared. Sending you healing thoughts from Texas.

  4. Gwen Manovich

    There are no words except I hope and pray for a better outcome 🙏you have trialed and fought a huge battle.💖 I cannot say I would do anything differently given the circumstance.
    Here’s hoping the universe holds you in her hands and changes outcomes. I will be thinking of you as well as hundreds more I’m certain! 🌈☀️

  5. Linnea,
    I am so upset that you are in pain and suffering so much. This may sound very naive. I have fresh AloeVera plants. Would you consider using the gel
    Inside the leaves in your mouth?
    Of course, your medical team must approve.

    Could it be worth trying?

    Please let me know, and I will ship it to you ASAP.
    Linda

  6. Linnea, we don’t know each other but somehow I ended up following your blog. I have stage 4 lung cancer and I think you’re amazing. I am crossing all my fingers and toes for you. Sending much hope, love, and appreciation.

    Jillian

  7. Linnea, I only want you to not suffer and knowing how very strong you are, I can not imagine. Remember there’s still heat and light 👈🏼❤️✊🏼

  8. Patti Helfand

    Linnea, My heart is breaking for you. I admire your conviction and no one can judge you for your decisions. No one is in your shoes. Whatever choices you make are yours.
    With love and admiration for your strength wherever your journey takes you.
    Patti

  9. Kristen Aliotti

    I feel as though you are a precious and close friend, and yet we’ve never met. Most of your posts and writing have been through easier times; these times are not, but instead so difficult. It pains me to know what you are going through, but I understand every word you’ve written. Your writing is glisteningly exquisite, and you are gifted in so many other ways, too. Hoping for an outcome that gives you comfort and a good future! Much love, Kristen Aliotti (I followed you when you lived in Marfa, and I was in love with the idea of Marfa! But through your medical stories, I have learned so much.)

  10. Elizabeth Wilson

    Linnea, I have been reading your blog for years now. Thank you for your thoughtful eloquence and observations which can be applied across the breadth of life’s challenges. I am so sorry to hear that you are suffering but glad that you had found some peace through strong and active choice.

    That said, I’m sending you very best wishes for a new silver bullet!

    Liz x

  11. Hi Linnea- I have been reading your blog for 4 years. I was working on the launch of a product for alk+ nsclc and wanted to understand the patient experience. I no longer work on that product but wow you opened my eyes to so many issues but also inspired me to be more resilient. Thank you. I am hoping for your pain to improve and somehow a new path for treatment opens. But mostly I am sending you love and comfort.

  12. Linnea, you remain courageous throughout. You have inspired and educated so many and continue to do so. We all have your back, whatever path lies ahead, and are holding you with love and hope always. ❤

  13. You are an inspiration to so many of us…please don’t give up the fight. We love you! You are always in my prayers.

  14. Linnea, For you to even mention pain tells me you are in agony. I am so sorry and feel completely at a loss as to how to help. What clinical trial are you in/principle investigator? I may be looking at one myself….I hope your scans show sufficient improvement to help you keep going. But I hear you. Remember we are all on this journey with you. Call me anytime. Unless it hurts too much to talk…❤️

  15. >

  16. heatherllwlc

    Sending you loads of love and holding a safe space for you. You are incredible and an awesome badass.

  17. Karen Cunningham

    Linnea,
    Thinking of you on Tuesday. Sending hugs and love.
    Karen

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