“Speaking a story can be an act of letting in light” ~Anne Bogart via Jeanette LeBlanc

So. In an effort to let in light - I have a quick story for you.

Last week for my 5th birthday- five years of more. More and more. Five years that I never imagined would happen, but did because of the love and light displayed by you- my friends and family. Stop 🛑 - words can’t do this thought justice. I am here because of the role you have played in my life and the hope you held that I’d make it. Statistics didn’t agree with you, lots of days I didn’t believe with you- but your love and friendship, your acts of kindness and support have carried and sometimes pulled me here.

Anyway. Last week as I marveled upon the “more”. I was going to write a Lessons Learned caring bridge update- I wrote it in my head, but couldn’t find the words to put it out there to y’all. I went instead and bought myself a new bracelet- the green beaded one in the photo and then I went and explored a new beach and took photos of the sunset. I challenged myself to walk along an Oceanside ledge so I could see the world from the other side of the BIG rock. Perspective is such a powerful thing and big rocks full of metaphors(my favorite is the Big F**** Rock in the book/movie Wild)

That was Tuesday.

And then Friday night I had a strange lesion on my forehead, and by Sunday night my eye was swollen shut, and by Monday I had Manzanita doctors ordering me to Portland and by Monday night I had another new bracelet and bed at OHSU..... in a room just steps from where I celebrated Christmas 2012- the place where I wondered if I’d ever see another.

I’ve been here all week. A week where I had planned to arrive in KC, attend the nutcracker with Guy and family and then spend Christmas Eve with them and Kessaya before heading back to DC with her for a few days.

Instead I’m In an isolation room as a team of wonderful doctors fight to keep the shingles virus from my major organs and monitor me for a gvhd flare in those same organs due to the virus.

Complicated shingles. Yeah- it’s an actual diagnosis. My main area of involvement is the nerve centers in my brain- thus why I have yet to make a post (just sending a text messsge made me sick)

Kessaya arrived last night. I should get discharged before Christmas Day but they are being extremely cautious. My Transplsnt team, opthamology, dermatology, infectious disease, etc are all providing input and oversight.

Even at discharge I will be in recovery for weeks- and all as I get ready to start a new targeted therapy (chemo) drug for the chronic GVHD that has been progressing this year.

The story? Even as I’m out here in an isolation room - on the edge of the USA- word has traveled to friends near and far and I’m reminded that You are the reason I’m here. You are who needs to be celebrated at this five year mark. Your friendship, your love- expressed in trillions of magical points of light has sustained me and allowed me to have more.

It somehow seems fitting that this holiday season I’m back at OHSU and a reminder to me of how each moment of MORE is but a reflection of the light you have given me. And my constant need to tell the story so I can let your light in.

This morning my friend Angie said “you need to tell people” - I said , I know- but I don’t know how. Then my friend Jeanette posted the opening quote on FB. And I knew how. Just tell the story- then the door opens for light.

My heart bows in gratitude towards you this morning. Thank you for your light.