Sitting here at the dining table of our lovely ‘cottage’–listening to early Saturday morning public radio, and wondering where to pick up and which strands to focus on. Each day, nearly each hour, is different and a bit slippery to the ‘touch’. I have never much liked to plan very far in advance—it has driven shann crazy over these 27 years we’ve been partnered and guess what? I have my wish; because now things are constantly in flux, constantly different, constantly new and unsure. We go in for a simple blood draw that should only take an hour and we are at the clinic for 8. Emmmm? Be careful for what you ask for!
The morning run to SCCA:—an every day affair so far, and starting any where from 8 a.m. to 11 a.m. Shann often needs some coaxing to sit up and start the day from her bed, which she needs to have to herself through the night hours (I sleep in the living room on a futon). We often start with a ginger root brew with lemon juice and agave sweetener to chase down the twice daily regime of meds, starting with our constant companion Dasatinib and always including anti fungal’s, antivirals and anti bacterial’s and white blood cell boosters. Now that her hair is no-more it simplifies the regime. Turn the heat down on the furnace (the thermostat is original 1950’s), get the files together, pack up the lap top for the waiting times and when there is the self-energy to ‘connect’, grab the puke bucket, look for the keys (today I spent 5 futile minutes looking, before I discovered that I had left them in the outside door when we came back yesterday—my life has thankfully been largely devoid of the need for locks, locking and keys)), and off into the hustle of Seattle traffic and I5 (also something that I have by and large insulated my life from).
Its now tuesday March 19th……..just coming back to this and no real energy to pickup the pieces above. I walk these days with my eyes focused down at the ground—at where my feet are going. Not really wanting engagement with the world outside of what is happening to us directly. I want all my energy/focus to be spent here in ‘this’ bit of reality. Angels come bopping in from time to time–the Seattle drivers amongst them, as they impress me with their courteous and unaggressive ways –or the man limping by on the sidewalk today, with the catywampus right leg and the biggest most beautiful smile on his face!
Hard watching shann (who is so brave and tough) lying on the table today, while Dr. PJ cork screwed out one and then a 2nd bit of marrow to be reviewed by the lab on the 7th floor—-checking for the bedeviling cancerous cells. There is so much out of our control—Yes, we said yes, and now its these mysterious spinal taps, and varying concoctions of drugs, and blood draws, and hydrations to bring up the low potassium levels and and and. We had three hours yesterday after the initial blood draw, with an oncologist and then a ‘go’ with someone from finance, both telling us about the bone marrow transplant process (which hopefully will be coming up in a couple months). I winced when the Dr. talked about percentages of success (something shann and I have assiduously avoided asking about), and again late in the day when we found out that we in fact did have to come back into the hospital starting this weekend for another week or so—the beginning of cycle 1B—-but boy is it hard on Shann, as they give her little alone time to rest/sleep
Enough enough—Spring arrives tomorrow and our friends are now on the Inca trail and the little stone I gave them to carry up for us, is no doubt being passed from one to the other of them as they hike toward macchu pichu. When Shann is better and if the gods are with us, we will walk north to south across the Grand Canyon …..something to look toward!
Know that many walk with you, though you don’t see or hear them…they are there…step upon step…with prayer in their hearts and minds. Yes, yes, trek the Grand Canyon…again…and AGAIN.
Dear Shann and Steve – how I long to hug both of you! I think of you many times throughout my day, wondering how you are really doing and feeling grateful for all things good in my life (even the not so good!) – I told someone today that I know you will both be writing a different blog in a couple of years – blogging about another wonderful adventure on the road. Thank you so much for writing with such candor and heartfelt words. We are all wanting to honor your privacy but want so much to be kept in the loop and I thank you for sharing it all! Love you both!
I am holding the vision of the Grand Canyon in my heart. Who knows, maybe Dan and I will cross paths with you two!!! The wonders of your adventures will never cease to amaze and inspire us.
What a process. So familiar to me as a nurse and as a support person. And, the perspectives are so different…..
The light is with you both from all of us and from the gods!
I am holding the vision of you both hiking the Grand Canyon! Thanks for sharing this journey from your perspective, Steve. It cannot be easy for any of you. I am grateful that you have each other – it ‘s unimaginable that some go through this all alone. And you have all of us who care so much for your family – we are here in the ethers, holding your hearts in ours, envisioning this being behind you and Shann restored to vibrant health! Love to you all.
And to piggyback on Lenore’s comment, if I may: the light also shines on us from within your spirits and power. Sending love.
Dear Shann and Steve–Your blog is a great and sustaining gift to us, To learn of your feelings–from the best to the most difficult, to hear what you do—from the small to the tremendous–these let us be with you, let us see you living so bravely and with such devotion to one another, with such tenderness,in even the smallest act..
Thank you for this gift of letting us be with you. I hold you in my heart, and, through the devotion and bravery and love I see in you, I feel comfort. In honor of what you share, I close for tonight. COPPIE