The Patient Patient

Wednesday morning I was on the surgery table, drifting through a light anaesthesia with memories of family luaus, coral reefs, and manta rays sloshing in my head.  What a lovely Hawaiian adventure.  Thank you, Mom, Jim, and Donna for traveling with us. 

And thanks to the crew of Uncruise for an amazing week. How is it possible? -- last week I was kayaking and snorkeling but this week I wake from surgery after having a port "installed."  I don't know how to make sense of this reality.  The boundary between health and wellness from disease and illness is territory I am still, after 3 years, learning to navigate.   


I have been VERY reluctant to get a port.  Every time a port was mentioned, during a difficult blood draw or infusion, I had a visceral reaction- NO!  I much prefer being stuck 3 or 4 times than having a freakish bionic alien inserted in my chest.  This week I was thinking about why I was so reluctant to agree to the port.  It isn't the vanity; I don't care about the scar.  And it's not worry over the very minor procedure.  I didn't want the intimate and physical daily reminder.  The port feels like an invasion, like a tether, tying me to treatments and illness.  Most of all I am scared I will never be done with treatment, never have a time I don't need a port.  I am afraid I will live the rest of my life with this port and die with it in my chest.  I hate that.  So I am struggling with how to accept my reality of new limits yet still feel powerful, with agency for my life and happiness.  I will work on that.  And will try and make friends with my new port.  Maybe we should name her?  I'm open to suggestions.  

We were hoping for a "Porlock battle plan briefing" yesterday.  But we are in a holding pattern, waiting to hear from my surgeon, Dr. Anna Rodrigues.  It is human instinct to rush to treatment.  Since I am asymptomatic and feeling well there is no reason to rush for surgery.  In fact, treating too soon just bring the next occurrence sooner, trading away a month, or two or three when I am healthy.  I will be a patient patient.  I promise to give updates in a week or two, as soon as my treatment plan is set.  For now, I am to stay busy and have fun -- Dr. Sekhon's orders.  

hugs to all, 


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I just discovered this message from Michelle in the "Drafts" section of the blog, written in summer 2021. Apparently, she started it to be an announcement of the research paper from her collaboration