I already know that answer: Its, some of both!….I wrote this next section a week or more ago—It still holds’ true.—–“So far today, I’m a S.O.B.. Its 9a.m. and I am in that state of mind that my guy friends refer to as, Porten’s pre-verbal time. I don’t want to speak to anyone, or interface with anything beyond what I want. “World, stay at bay!” and I will decide who and what ‘gets in’. Today all I want in, is NPR’s Weekend Edition and my coffee. I have already given poor ole sick, weak Shann, the cold shoulder, with a “not yet, not now!”
It’s a head space that sometimes over-rides my generally helpful and empathetic and present, self—–we’ll call that, the saint part of me (SPOM). The SOB Land (SOBL), is epitomized by a withdrawn nature, cheeks withered in, shallow breathing and regular deep ‘sighs’. The mornings for some reason (perhaps its the freshness of a new day bumping up against the reality of cancer?) are almost always the rawest periods of the day for me—-Then, and again when I am lying in the front room reviewing the day, after ‘tucking‘ Shann into her bed. I’ve been reading Hesse again after a 4 decade hiatus, and at a page a night before I fall asleep, it will take me to Thanksgiving—–at which point if all goes well, we will be able to move away from the 30 minutes radius of UW Medical Center —-talk about a sobering reality check!
Ok—–am looking over the kitchen table now, at our life (I know its way bigger than this!): The Neupogen single jet syringe’, the alcohol wipes, UW Physicians bill, pill canisters, tapioca box, tissues, notes on transplant data, nieces graduation notice, the vase of plastic flowers (real ones aren’t allowed in our living quarters), and I give out a big sigh.
It’s time for a 2nd cup of java, as I pull myself around the corner and into transaction with the day. Its time to cajole Shann into eating and drinking something/anything! The most basic things now have their own challenges. The drip bag for hydration (I have renamed it with my own verbiage—‘irrigation’ ) is awaiting—–250 mg per hour for 4 hours, with a little potassium added to keep that important element in balance. Then a trip the SCCA for a blood draw and the 90 minute wait to meet with the nurse and the report on what the lab results are…..and so goes the day.”—–
The above was written some, many days back, and things are more or less at the same place for us. It reminds me of the sage words from a mom of about my age, who has been through this for over a year now with her 20-something year old daughter: “Every day, no matter how bad, brings us one day closer to health—You have to think of it that way, during the hard times!”.
I suppose I should try to add equilibrium to this, with some sign that I actually have a counter balancing SPOM. Food—-Its always been the Porten way. If you are sick, heart broken, leg broken, in love, depressed or out of work—-We’ll fix your some food!—I do that, and clean up, and shop, and order drugs, and rub her back, and cuddle with her to watch our evening show—West Wing’, and hold her while she ‘chucks her cookies’, and make sure the Dr’s ‘get it right’, and that we make the multitudinous appointments more or less on time, and that some physical movement (even if its just around the corners of the cottage) happens, and the bills get paid, the drugs get taken and the——holy smokes I AM A SAINT!—-at least a part time one J.
Cheers all—-Porten SR.
Ps Eldest daughter and partner are joining us this weekend, and will be here with us as we go back into the hospital for Round IIIB on July 5th, and then to July 30th when the front work gets started, in preparation for the haplo stem cell harvest and transplant in mid August. Its good to have us four together for these next months—Jack is here for awhile too, down from our island home (our rag a muffin four legged). These have been ‘trying’ weeks, as Shann’s health has been steadily zapped….It’s very hard to watch and for Shann even more difficult to endure. Our friends are the steady rock that we are now leaning on.