We encourage you to find more of Teisha’s writing at the blog http://betterthansleepingalone.typepad.com/my_weblog/Comment
Lead vocals Teisha is from Portland. She has curly hair and her dog also has curly hair. Her dog is an ambassador of goodwill sent here to warm the frozen hearts of poodle-haters everywhere. She is goodness and light and loves to be loved and is loved, I speak here of the poodle. Teisha wants to be just like her dog sometimes. She wants to be non-shedding and eternally optimistic. She wants to be ready for a long run day or night. She wants to be keenly aware of sounds and smells but always in a friendly detached manner. She wants many things she cannot have, I speak now of Teisha.
Here’s what happened. I didn’t feel great around the 4th of July and shuffled off for an afternoon nap in the upstairs bedroom with the vaulted ceilings and views of the pasture in what we often call “Camp Mama.” Fast forward, late July hot as blazes in our great State and my skin is hot and itchy and sloughs off in shallow sheets of itself. I am puffy and there is some pain.
In the weeks that followed, I ended up in the ER and then in the hospital on three separate occasions. I saw a lot of friendly and familiar faces. I spent the night in Intensive Care which was different from the bone marrow zone. In ICU, the nurse has two rooms he/she is responsible for and their desk sits just behind a row of windows looking into the two rooms where we patients lay on a bed. There is no bathroom, a commode is brought around when you need to go.
After spending one night in Intensive Care I moved up to the bone marrow floor. I was recognized by many friendly faces some of whose names I remembered. Some not. Everyone was calm and efficient. One day my veins were not cooperating and after six “pokes” I was still not connected to the bag of goods waiting to fill my tank. I think I may have cried as we waited for another IV nurse (people who specialize in IV installation). She swept into the room with a shock of deep silver hair crowning her vivid eyes nodded down to me and said “I remember you.” And I remembered her. You could tell from the way she nestled the needle right into place without me feeling a single thing that she knows what she’s doing. When someone with a full well of experience comes into a room crowded by one patient and several caregivers and makes it all better, it shows that she knows, she knows what she’s doing. As the door closes after her, the Nurse Kelly with a whisper y throat and a raised head nods as she says “She’s (huff and puff) been here for like thirty years!” Next time I’m up on the hill in need of an IV, I know who to mention.
That said, it looks like they have found a good donor who is almost (but not quite) a perfect match. She is mismatched by one “DQ” which is the same mismatch I had with my first donor. The new donor is 22. Younger is not imperative but it is helpful. A 22 year old immune system, I’ll take it! There’s a chance I will be able to have the transplant outpatient (which means going home every night) but if I do have to stay on the 16th floor it has been remodeled these last few years and the food is sooooo much better and I know more than before what to expect. Glass half full.
While in the hospital for fevers they put me through a CT scan which is where you remove your bra unless it’s wireless and lay on the table and they pass you through a hole in a big machine and the woman in the machine says “Hold your breath” as you slide under and then when it is done she says “now breathe.” Here is a paragraph from the report none of which I really understand.
Right lower lobe resection line is noted. Tiny parenchymal nodularity is noted again within the right upper lobe, right middle lobe and right lower lobe which is not significantly changed since the prior study. Subsegmental atelectasis persists in the left lung base as well the right lung base. The lungs are otherwise clear. There has been overall decrease in size of axillary, mediastinal and cervical adenopathy.”
The spell check is telling me several of those words are spelled wrong, what does it know. When Dr. Meyers gave me the news she had a smile on her face so, I’m going with that. The plan is, to keep doing the treatment I’ve been doing to help lower the number of CLL cells in my body. Two more sessions will see us through October. In November Mom and I are going to spend some time in Paris. She gave me this trip as a Christmas present back when we weren’t thinking about transplants. The Doctor says we can go so we’re going. And then, if it all lines up, I’ll have a new immune system installed early in 2011.
More than one person has looked at this as good news! Mom is hoping we go to Paris, have some wine, walk by the river, listen to the French speaking people and that when we get home the Leukemia will be gone. If not, we’re as ready as we’ll ever be and looking forward to surviving.
If, in reading this, you feel too sad or bummed out please, stop reading! I am not trying to dwell on the dour matters and sometimes I don’t want to include the facts of the situation in case it will overwhelm someone. Then I say “Good God” and go on jotting down all these this’s and that’s.
“I feel like I’m going to have a performance. It’s not going to be good.”
Getting ready to see Dr L, her Oncologist, February 2004Comment
There are a million ways to get lucky, and some of them are better than others, that’s just the way it is. I hear the screech of hot tires in the cold December night, no rain. I sigh. And blink. And scratch my face. The dog circles around herself a few times before settling in- some instinctual tampering down of long grasses, acted out, involuntarily almost, upon the thin brown carpet on the kitchen floor.
The sun came up clean and bright over the west hills casting lanky shadows of leafless trees all over the sidewalk and on the sides of buildings. Some of us are still waking up. I’m itchy all over and the bath will only make it more urgent and I will scrub and scrub and I’ll forget not to moan. Home sweet home, I hear the air being pushed up from the basement and I take my hat off.
Oh Holy Night, and still comes the itch, menacing and ignorant. Wads of crinkled wrapping paper abandoned on the floor. Ribbons with knots and tissue with tears and then phone calls with tears. Hang on. Hang on. It is not all gone, just frozen and delicate, waiting for cake. Lonely friends line the sofa weeping sweetly over recollections and change. While I’m scrubbing, rubbing anxious red skin I’m thinking about hope and hoping for it. A glimpse of better times ahead, a battle fought and won and dangling harmlessly somewhere in the back of the mind in a distant time a pleasant memory for what is dead now …. swollen belly, jagged rash, blurry vision, hair falling out, bloated face, a wicked fatigue, a restless appetite. Uncertainty clings to the December air like a sour, stained hand-me-down coat. We are helplessly hopeful and keenly aware that we cannot know tomorrow.
Ding dong ding dong, Christmas bells are ringing. Actually, the fact of the matter is that I have never heard a Christmas bell nor would I know what differentiates a Christmas bell from any other. Still, it was Christmas today and like the whose in who-ville, the family made a big circle, hand in hand and sang the table prayer because tradition calls for it and because it is beautiful. Our family Christmas happens in the commissary of Peace Lutheran Church, a place at the height of its life during the 1950’s. Vaulted ceilings and a balcony for the organ, an intimate chapel room just off the right of the large entry, the basement full of Sunday school rooms and a fireside room with its own kitchen…it used to be filled with children learning the words to “Jesus loves me, this I know for the bible tells me so. Little ones to him belong they are weak but he is strong.” Aunt Becky is the church secretary so it doesn’t take much to be given permission to conduct our family gatherings there once a year. This year Julie Smith, Dell, Mom and Grandma and Grandpa spent Christmas eve decorating long tables with red table clothes, springs of bright red and green holly curled around candles stretched out every few feet. When the immediate family, the sons and daughters of Harland and Kay and their offspring get together and everyone is there we number about 50 and there are many tribes within the tribe, bursts of laughter thunder through the air- amplified by the soaring ceilings and the shiny vinyl floors. The buffet is lined with the usual suspects, ham, turkey, mashed potatoes, rolls, butter, salad, that vegetable casserole that has all the canned fried onions on top and piles of dessert at the end. We sit, we laugh, we eat. Grandpa followed in the footsteps of his mom and read the Christmas story of Jesus in the manger to a floor full of surprisingly attentive children. He is old and he is happy and he is very handsome- even more than when he was young. It is impossible not to love him.
Fear comes in an unthinkable number of arrangements, acres and acres of flower beds lined with the seeds of regret, indecision, shame, guilt and a sense that one has been forsaken, even by the oneself. Fear is odorless but tangible like a wind against the skin. It borrows from the weather storms of torrential emotion caving in and over itself, foamy and cold.
This fear pervasive and poking a level finger in whichever direction is the most opportune. It does not tire. It does not toil. There is nothing unnatural about it. We might be lost without it. We would have no knowledge of where the edges of our worlds collide.
At some point, our fears clog us up. We spurt and gasp for something soothing with which to salve these mostly innocent wounds. We glare and protest until it is all we can possibly bear and then we cease to struggle anymore. We tread at the deep end of the pool, tormented by the thought of the shark that has never been there. And then we let go, hands wide and waving above our shoulders and a sigh of rigid relief. Exhausted from feeding our faces with fear, we repent. Forget. Smile in to the sun, smile inside for a light and tender moment of time. This is what the fear is for. We would not be so content without this contrast of experiences. Gloating and aimless Fear remains crouched by our side, a seemingly relentless jock dragging behind its dingy cloak a wagons worth of unsafe ideas.
And off we seem to go, anyway.
All this blabbering is just to say that while the fear of things I cannot control or change is disseminates through many of life’s circumstances it seems to at the same time illuminate all the things that leave me fearless. Courage and hope and dreams of making good and laughs and trying to understand that it is all going to be alright.
Written 9/29/10, one year before she died and posted today for Donnie Cox who felt the fear and this week let it go.Comment