Rise and shine

Because what else would you do.

This, my friends, is necessity/habit/resolve at its leanest.

As long as I have the opportunity to do so, I intend to make the very best of each and every day. Right now that means prepping for one particular outcome (getting my affairs in order) while staying open to the possibility that those efforts are in fact premature.

It’s a delicate balance, this living while dying shit. A bit of a challenge, if you will. But–strangely–one I am embracing. It doesn’t get more clear headed than this. I am rapt with attention. As honest with myself as I have ever been. Taking it all in while wrapping it all up.

Acknowledging my inevitable destination (if not now, later) while savoring every moment. Truly present. Unafraid. Aware.

8 responses to “Rise and shine

  1. Linnea – I am with you in thoughts and peace – sending love daily.
    Karen

  2. Because what else would you do.
    Lots of love Linnea
    xx tom

  3. If anyone can face this “truly present, unafraid and aware, it is you, Linnea. However, you know, don’t you, that you have a legion of those who love you, ready to catch you should you falter. Sending love and courage.

    Joyce

  4. I know you’ll handle whatever you need to Linnea, like everyone else who knows and Loves you ❤️✊🏼

  5. Sending you lots of love!

  6. Sister, I can sense your nerve endings laid bare and naked to the universe; reacting, moment by moment, to the freshness of beauty, being and ending in the same measure of time. Moving, bracing, comforting, clarifying and frightening it all is. And moment, by moment, it marches relentlessly forward toward the ethereal, final and the eternal. How now do we find ourselves here? All we know is that we are here in these juxtaposed moments hyper-aware of the beauties and confounding ironies…

    Much love and fellowship to you, dear woman. You brave, tenacious, and leading light for many of the afflicted and frightened. Your bright light shines now stronger than ever and clear as rays breaking through storm clouds.

    May peace embrace you with a mother’s everlasting love and nurture you with unconditional comfort that all will be well regardless of outcome. All will be as it is supposed to be – You shall be released whatever comes.

    I give you my sincere fellowship as one human to another facing a similar crossroads between the temporal and the eternal.

    Michael

  7. It was a blessing to talk with you yesterday at the Lungevity conference. Thank you so much for sharing your incredible story.

  8. Kristina Hall

    I am a huge fan, having read and been with you in spirit through this and because your writing is top notch and amazing to read. ALL has also become my life.

    My mother is a 1 person Lorlarinib clinical trial (or was when she started it now several years ago). I found it by reading about Alice Shaw and seeing her interviewed. We found my mum’s ALK recurrence even though her lobectomy was pre-gene testing and her oncologist was certain her pains and nausea were a pulled muscle and would not do an MRI. After going to many big names cancer centers over a years time and having a botched biopsy, her tiny tumor had Mets up the spine and in the brain so she was given a 3 month dose of the wrong treatment (botched biopsy) as no one would listen to us. Finally genetic testing of original tiny spot from lobectomy 8 years previous, and the most current biopsy tissue showed all were ALK NSCLC (o us or was a huge “duh”). Damage was done now and she was ill from chemo, and with 15 tumors in her brain had a 1 ml growth time to brain death. She had to put her end of life affairs in order. The lottery was a call that with ALK she could start Crizotinib hot off the press. She also started with a naturopathic oncologist on immune boosters, cancer killer supplements, high dose intravenous Vitamin C weekly, and CBD in a mint spray. Within a week she was walking her dog, within a month she moved home where she enjoys living alone with her dog. She went to Alectinib next due to side effect profile was so much better, and now Lorlatinib, each time hot off the press. I have prayed it does not stop working or Alice comes up with the next one soon, as you are.

    I have read that going back to the original inhibitor she stared on is working for many with ALK (although I am certain Alice has mentioned this to you). I believe my mother’s success has actually been the added I.V. Vitamin C each week and the CBD (from hemp so no THC or high) that she now takes high dose as a pill. Her scans have been clear for 3 years. Both Vitamin C and CBD sit on different protein receptor sites than the targeted therapy so the cancer cell gets a triple whammy.

    I pray that you both, being the pioneer women on the ALK inhibitor therapy front lines hang tough and show all that cancer can be lived through with a quality of life worth living. Please know you have unknown fans in your corner cheering you on.

    Blessings and a huge hug,
    ~Kristina Hall, Eugene, OR

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