I'm home!!
I was transported to Hospice House last Wednesdy I believe. Hospice does not have the same associations as years past...it's a six unit home with comfortable rooms and doesn't mean I am dying today - just getting pain handled. My room was a flower shop overflowing at the seems with wild flowers, a painting from my friend Mishell who stopped by with her sweet man and son from Boise to visit. I have been blessed by sweet nurses, friends, care and love and the beauty of the moment.
The beautiful thing about facing one's mortality daily is the ah-ha moments:
I am so loved - I have been showered with friends love, laughter and kisses and good company from people traveling from Seattle (Leigh and Bethany and sweet Luna), Boise (Mishell, Art and little David) and Jessica, Portland (Bri, Ali L. Caitlin) and locally (Ali L., Chandy and Andy, Katie and Eli and sweet 9 day old Finn Orion who nestled into my chest, Jacob, sweet co-workers, and old Res. Life friends Emily and Trae from my SPU days and family). I was in and out of drug induced clarity, and I know many sweet people called, texted, showed up and I remember most of it...but it is certainly nothing personal if I have have forgotten. I was on morphine and did have a few hallucinations (involving Mary - Crazy Eyes - who was my clown nurse...now there is a drug induced horror I never need again)!
The sweet gifts I receive of time, gentleness and friends who climb into my hospital bed to cry with me mean so so much. You don't know have to know what to say but be here. I don't know know what to say - I only know that despite the number of my days I plan to make the most of each one, and to focus on what is truly important - my peeps. They remind me that there is always hope, even when we are considering things no 31 year olds should ever be considering....the dreamer in me is filled with hope and miracles, but the practical side is also streamlining bills, organizing paperwork so when I do die no one is left with questions about my accounts. It's a strange thing to be thinking in terms of one's mortality when one would rather be planning a wedding or a honeymoon or some more FUN life-stage appropriate event.
My doctors are doing a lot of out of the box thinking especially when it comes to drugs and due to the Heme One Foundation genetic test I had done, they believe a drug used for thyroid cancer might actually give me more quality of life. I have decided to continue exploring natural treatment options for quality of life purposes, but also to do the following plan:
The Plan:
Last week I had settled on doing a clinical trial at OHSU, we would have started tomorrow. It would have involved long drives to OHSU the first day, the 8th day, then a week off before staring again. I'm tired just thinking about it, the nausea, the fact that only 11-12 people have done this study and one died the first week due to a fluke thing...I wasn't highly optimistic about that option.
My oncologist here had looked into a drug, more commonly used for thyroid cancers but that would work with my met-blocker based on the genetic test we did. This drug, although it comes with it's own unknowns, also gives me more of a quality of life by allowing me to stay at home, near my peeps and enjoying life as much as possible. We were able to work with my insurance to get the ball moving (and I am so thankful)! We'll start the new drug Friday. There are unknowns, and truly, it is no different than any other clinical trial...at this point, anything is a trial. We don't know what will happen but I do know what is most important is feeling well enough to enjoy time with loved ones, work and contribute some to the world and to savor the moments.
I'm settling back into being home, finally cutting my work schedule down - I'd still been pushing close to to full time weeks in recent weeks and working on simply enjoying life. More details coming as we unfold the plan with my oncologist here tomorrow, but for now, that is the plan...
Love life, rest, be cared for at home in Bend by my doctors and loved ones. Sounds perfect!
Thank you for checking up, connecting, loving! I'm hoping for a get together soon! I'll keep you posted. xoxox Love you all.
I love you. I believe in you. I trust your heart with the light of the world. (Ahem: you're a babe)
ReplyDeleteThank you for the beautiful words from your beautiful heart. You, Sarah McMurray, are my favorite superhero.
ReplyDeleteSitting here bawling like a baby for you having to face these choices. Whenever I feel like it's a crappy day, I just remember to stop and see the beauty of the world around me and be thankful for all the beautiful people in my life. I'm so thankful that Autum talked me into coming down for your workshop and a reminder of what you read that day:
ReplyDeleteWe have come to Be Danced
Not the pretty dance
Not the pretty pretty, pick me, pick me dance
But the claw our way back into the Belly
Of the Sacred, Sensual Animal dance
The unhinged, unplugged, cat is out of its box Dance
The holding the precious moment in the palms
Of our hands and feet Dance
We have come to Be Danced
Not the jiffy booby, shake your booty for him dance
But the wring the sadness from our skin dance
The Blow the chip off our shoulder Dance.
The slap the apology from our posture Dance
We have come to Be Danced
Not the monkey see, monkey do dance
One two Dance like you
One two three, Dance like me Dance
but the grave robber, tomb stalker
Tearing scabs and scars open Dance
The rub the Rhythm Raw against our Soul Dance
We have come to Be Danced
Not the nice, invisible, self-conscious shuffle
But the matted hair flying, Voodoo Mama
Shaman Shakin’ Ancient Bones Dance
The strip us from our casings, Return our Wings
Sharpen our Claws and Tongues Dance
The Shed Dead Cells and slip into
The Luminous Skin of Love Dance.
We have Come to Be Danced
Not the hold our breath wallow in the shallow end of the floor dance
But the Meeting of the Trinity, the Body Breath and Beat Dance
The Shout Hallelujah from the top of our Thighs Dance
The Mother may I?
Yes you may take 10 giant Leaps Dance
The olly olly oxen free free free Dance
The everyone can come to our Heaven Dance
We have come to Be Danced
Where the Kingdom’s Collide
In the Cathedral of Flesh
To Burn Back into the Light
To unravel, to Play, to Fly, to Pray
To root in skin sanctuary
We have come to Be Danced
We Have Come..
~ Jewel Mathieson
Love you sweet Sarah.
ReplyDeleteWith you, sweet sister. You shed a mighty bright light.
ReplyDelete