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 The SOB Land (SOBL), is epitomized by a withdrawn nature, cheeks withered in, shallow breathing and regular deep ‘sighs’.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.
You are a saint, Steve. Even saints get grumpy. Your words bring both a smile and some tears, as always.
So glad both girls will be with you for awhile, and Will, too.
Love to you all,
Shedding some tears as I read this Steve. As Lenore said, you’re a saint… stick with the SPOM. I imagine all saints have some @$$#%&*! expletives in their vocab as well as some very grumpy, loss of words days too. XO Lisa
I just finished reading about “the grumpy saint,” Father Vincent McNabb OP. He actually is in the process of becoming a saint, but that is just detail. Anyway, he was so dedicated to his meditation on God that interruptions sent him into behavior less than saintly.
Give yourself a break and recognize all the good you are all doing.
Blessings and prayers…Louisa
Steve, in your situation you get to be an SOB all you need to because you are also a Saint. Even Saints weren’t saints all the time. We are all with you in love and spirit, just as we are with Shann and the rest of your family. And we love you no matter what.
My apologies. I forget to acknowledge all that you are doing. And all that Mariya and elena are also contributing. I forget what it has been doing to you guys as well. the way your lives have been itched katerwumpus (sp?) for many months now. I don’t see how a patient like Shann could have a more loving husband, loving daughters, a more devoted family. You desrved the huzzahs of your many friends, for taking
such good care of your, ad
As Johnny Carson cracks
Hang in there, Steve. This has to be the hardest thing a spouse can endure….and it sounds to me that you are doing a heroic job. I am sitting here in the peace and quiet of my bookstore after a busy day, counting my blessings, and wanting to send my little bit of encouragement your way…wish there was more I could do.
My Dear Steve. I think of your infectious GREAT and WISE POLAR BEAR SPIRIT!!! Every morn…..drum and coffee in hand, Top Hat and Cape in place (not to mention the classic pair of ‘holey” faded purple shorts) you begin the early morning ritual of slowly stirring a bunch of sleepy, grumpy fellow bears into a wild and exuberant frenzy that finishes with a primal leap of faith into the lagoon!!!! You bring a quality of magic and life to all you do…and I KNOW these are your gifts to Shann and your girls. With sooo much love and strength to you all!!!!! Xxooxxoo Juliana
Hang in there Steve. Shann WILL recover and these hard times will have all been worth it. This storm will end, the clouds will part and the sun will shine again. You’ll eventually be able to look back on this time with relief and gratitude. Its just a matter of time. Much love to all four of you … and Jack.
Thank you for sharing your raw and honest self with us, your friends and tribe who care deeply for you and your family. You are both – the Saint and S.O.B….we all have these parts in us, too – you are brave to admit it and talk about them. Bravo! I love this poem by Rumi – may it bring you comfort:
The Guest House by Rumi
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.
Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
Love and Hugs to you, Shann and the girls.
Steve and Shann, I continue to be amazed at your wisdom and strength. My thoughts are with the whole family. Blessings from Don
Jesus, I read the first few lines and, finally there is a name for the times where I am an SOB, and it may be an heriditary ailment! “Porten’s pre verbial time”.
(And I thank everyday for the existence of NPR too.)
The ‘Bear’ walkith in many times in the AM when I go to work at Home Depot. There is a certain respect from others that go along with this, but I have to show my sunny side later on and become the playfull bear. I hear “That’s just Porten” , or Chris being Chris. I have somewhat embraced this, making sure I balance it all out.
Balance. As I start to teach the other little bears around me.
Something that has bubbled back up the last few days, that I had forgotten from along time ago when I was ‘growing’. We get what we need. That can often seem hard to understand, but more true than not. my love