Drained

What a busy seven days it has been. Melinda and Sally, Jemesii, Peter and his girlfriend Caroline and my brother Bink and sister John have all visited over the past week. It has been great fun, much has been accomplished and I am exhausted.

However, I also have had more baseline energy. A function of restarting TNO155? Perhaps.

This morning I was scheduled for installation of a PleurX-cath–financial assistance approved. My breathing has also been some improved and I went to the appointment hopeful that I should be turned away again–but this time for lack of necessity.

And indeed a Pleur-x was deemed unnecessary at this junture. Instead I had another thoracentesis which yielded 150 ml of serosanguinous fluid.

Last night I learned that TPX-0131 would be at MGH no later than early next week. I know my oncologist has been working tirelessly on my behalf to forestall more delays, and my friend Rob Densen and his pals at Senator Markey’s office got involved as well. Moral of the story? Choose your oncologist’s, your friends, and their friends carefully.

To put a dot on that i, I shall take my final dose of TNO155 tonight—and my final dose of lorlatinib on Sunday as I begin washout. And then, next Thursday, my lead in dose of TPX-0131.

There have been moments (hours, days) in the preceding weeks where I felt I was down for the count. I don’t feel that way today. Raggedy and realistic about the fight that lies ahead, but confident that I’m going to get a shot at it.

xo

3 responses to “Drained

  1. Phew! No PleurX – cath is encouraging. Fingers crossed over my heart for you. I feel like filling that xray with flower scans and sending it back to you. Love and Flowers
    Ellen

  2. Yes, as I had said, I have every confidence in your fight and ability Linnea, onward!❤️✊🏽

  3. Hi Linnea,

    I came across your site after about 10 years, I stumbled on the Carosum post you put on your blog about my wife Karin, ten years ago.

    I was astonished to see that so “little” had changed yet so much had happened in your life. I did not read all your posts of the past 10 years, but it is incredible how you have managed your life and survived such a long time. It filled me with a mix of joy, astonishment and optimism as well as sadness. I hope you can read between the lines what I mean. I guess this mixed feeling is what you live through everyday.

    Another thing that struck me is that so much progress in treatment options has been accomplished which you used to your benefit. Still I read in your postst that with the new options the struggle of the patient is the same every time with every new step.

    I did not really read in to your current “medical status”. I hardly understand all the medical terms but I hope you will get (back) to long periods of relative health without treatments and nasty side effects.

    I send you the most kindest greetings from Holland and I hope you continue your difficult journey for a long time.

    Cheers,

    Janwillem

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