Hurry hurry hurry up

So. I need a 4th generation ALK inhibitor. Stat. And I’m not encouraged by the fact that it’s been almost five years since lorlatinib, a 3rd generation ALK inhibitor, became available in clinical trials.

And although no one would argue that the 6.8 years of median overall survival that is now a statistical probability for ALK+ patients is a good thing, I can’t help but believe it may have negatively impacted the urgency to identify further ALK inhibitors.

Over here in Linnea Land we are feeling that urgency thing big-time.

Today was scan reviews aaaaaaand……just as I expected the news was not cheery. Continuing progression. Not rapid and yet decidedly of the rampant variety. Upon further questioning, an estimated three to six months until lorlatinib is not going to be enough. Which would be okay if there was in fact anything else.

Symptomatically, I knew as much. A nebulizer is being delivered tomorrow and I will once again become an albuterol junkie. Breathing is some necessary shit and I need to get mine back on track.

Me.

Last weekend I was in Colorado for my niece Mesa’s baby shower. That, and a much needed break from my own reality. Yesterday morning I sat in this egg shaped chair, my sweet spot, and said to my sister Bink: ‘I’m just going to stay. I mean, why would I go?‘ Bink and her husband Greg brought me a smoothie and a latte each morning and a martini every evening. The life, y’all. But my own reality show was calling and I boarded that airplane back to Boston anyway. This morning I was at Yawkey, not eager and yet ready to receive that reality check, gently delivered by Goddess number one, Dr. Alice Shaw.

Sweeeeeet spot. Notice the empty smoothie glass. And that Colorado sunshine.

After an appointment with Goddess number two (my social worker, Mary Susan Convery), I walked to the Boston Common to meet a date because even when, maybe especially when the shit goes down this hard, you need to just keep on living. As loud and as large as life will let you. And sometimes, even larger.

The gorgeous Boston Common.

8 responses to “Hurry hurry hurry up

  1. I wish you had stayed too! Next trip bring your pup and just stay. Why not?!

  2. Linnea, we will live as LARGE and WILDLY as we can in Italia!! Something for you (and for me..) to focus on and look forward to! ❤️✊🏼

  3. Oh, Linnea, girl! I hear you. It all makes so much sense to me. We ARE grateful for the extra months/years. But it’s decidedly not enough when that toolbox is down to empty. I am praying for you and all of us. C’mon, researchers! Any clinical available? Keep us posted and, as always, thank you for your very raw and real sharing. ❤️

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