Last week–on Monday–I saw Jessica. She told me to enjoy this time. And I am.
What I no longer have: pustular acne, split fingertips, blisters on my retinas. Unrelenting fatigue. Alopecia. Intermittent nausea.
What I do have: hair. Eyebrows, eyelashes, and freakishly straight, platinum blonde locks. I will take them.
I am in the in between. Lorlatinib shall not serve as more than an intermittent treatment. At this point, it feels like an old friend. Imperfect, but reassuringly familiar.
Before too very long, I shall need to go down some other path. But, in the meantime, I am feeling hella like myself.
This weekend Kumo and I headed north, to my friend Annie’s home. We had a frickin blast. Cooking, traipsing, drinking, getting high. Looking at the stars. Talking about art. And life. Toasting Easter with champagne drunk from the headless carcass of a chocolate bunny. Living. Large. And light.
Before too long I shall be returning to business. The business of staying alive. But in the meantime, I am–with all due respect–simply alive.
Happy Easter Linnea!! You had the best Easter I’ve ever heard of!! I love you!❤️
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Glad to hear from you! And glad you had a great day. Happy Easter
Linnea, It is wonderful to hear your story. A year ago February, you met Jim and me when we were in Boston to see Lecia Sequist. The targeted therapy stopped working and actually made life worse for a while for Jim. He has lost a tremendous amount of weight, and moved to supplements, diet and low dose chemo. His muscle loss and continuous nausea has really been difficult. He has a continuous cough. The MD say the only way to stay alive is high dose chemo. The naturopaths insist their method of supplements, restrictive keto diet and low dose chemo is the only way to stay alive.(We are beginnning to see this is not a life jim wants to live without any hope of relief from nausea, weakness, cold, and regurgitated medicinal aftertastes from supplements. There is a third route – hospice. If your life is so compromised that the joy is gone, the next step is hospice. You give up all treatment and hope of survival, but we all die. Besides who wants to go in a hospital. There are no clinical trials for Jim. Thank you for giving us hope. I wish you well on your journey. Charlotte Bodding
And Linnea, that is exactly what you are practicing, as always, the wonderful, hard, challenging and glorious job of being alive!👈🏼✊🏼❤️
And Linnea, that is exactly what you are practicing, the wonderful, hard, challenging and glorious job of being alive! 👈🏼✊🏼❤️
It’s so good to hear you are enjoying life to the fullest….and then it will be back to work, getting on track with whatever medicine throws at you!!