Wednesday, 27 June 2012
5:00 am. Cool, breezy, damp after 24 hours of almost non-stop rain. At 4:00 I am sitting on the balcony dressed in PJs, and my blue velvet robe. I have a fuzzy pink blanket over my head and shoulders. The plants are asleep under miscellaneous pieces of patio furniture and plastic covers so I’m watching the sky lighten slowly to blue. There are big parking lot puddles, floating green leaves. The air smells clear and fresh.
This is an optimistic morning – somewhere in-between “side-effects” grabbing hold and spinning me into the cosmos and steroids making me feel…. I don’t know how to describe it…as if, I guess, my head was full of white noise. I start the shopping list for later: OJ with pulp, bread, eggs, avocado, paper towels and so on.
Now, I do one twentieth of what I would have on a “normal” day once. And damn proud of it, too, if I do say so. Adjustment is a long process. Not only do I have this picture of who I am to tinker with, I meet a fair amount of resistance from friends and loved ones. We all project a little story on ourselves and the people we know – we cast ourselves or them in a certain role. Strengths, weakness, type of character – what role they play in the movie of our lives. I have often been perceived as strong. Stubborn enough to outlive everyone. To some people, I am more symbolic than real. When they see me “diminished,” the shock is clearly visible on their faces. They are shocked, or sad. I know the look, I’ve seen it in mirrors a number of times.
Still, there’s What I Was and there’s What I am. Underneath the brain hiccups, hiding behind new disabilities is the same person. A person who imagines singing plants and laughs at inappropriate jokes and who is stoic much of time. A friend of Wendy’s, a very wise astrologer, once dubbed me a “Namer” and that gets me though a lot. Although change is frustrating, there is a part of me always watching, quantifying, naming the changes I go through. Here’s that Mr. Spock thing again. I find if “fascinating” observing the effects. I make notes. I’ve always been an introspective person too. These days, I’m introspective (or cognitively impaired) in little hiccups. I rate my days by percentage. A good day is 60 %. Hell, I’m no over-achiever at this point. The physio ladies, in assessing me and recommending Rodney Roll, have already magically improved the grade.
I’ve been thinking about making a piece of bead embroidery lately. That could go on for some time, stuck between thought and action. (Remember the sweater I didn’t hang up?) I’ve have been very cautiously observing that the nerves in my feet seem to be regenerating – maybe. A little.
One step at a time, one burst bubble in the bubble wrap at a time.
Tuesday, 26 June 2012
Creativity, I have recently discovered, is not dependent on ability, while the opposite is not true.
Lose the skill and your Muse is still there filling your head with all kinds of whimsical notions.
I sat out on the balcony this morning, in the rain, thinking about how the balcony plants always seem to be in song. From there, it was a short trip to imagining what each, according to color and nature might be singing.
The pink & yellow Petunias: "Ode to Joy"
“Conchita” (our red tropical): “Malaguenas”
The Million Bells: “Mocking Bird Hill”
The flame plant: “Flamenco Arabe”
Marigolds: “Jeremiah was a bullfrong”
Impatience: Vivaldi – “Spring”
Quiet the little riot going on on the balcony. Morning all!
Monday, 25 June 2012
5:57 a.m. The sky is already blue and clear. I make my usual morning trek to sit on the balcony and visit the pot of marigolds. Early mornings are sometimes more lucid times of the day for me. I haven’t taken meds yet and my mind is not yet floating vaguely somewhere in space.
I’ve tried to describe the feeling I usually have: “foggy”, “woozy”…. But those words don’t even come close. My mind is not exactly with me. It takes enormous force of will to return to the physical and maneuver, to focus clearly to do any task, one tiny step at a time. The notion of multitasking (a scientifically proven failed technique, by the way) is hysterically funny to me now. Even getting up from a seated position is a series of individual steps – place my hands, push to upright stance, stand still until my balance is safe and I have a handle of gravity, take a first step, pay attention to furniture or objects that might jump out and attack me, fix my gaze firmly on my destination.
I sprained my ankle not doing all of this. I walked across the floor and straight into the runner on our rocking chair. For weeks now, my left foot has been swollen, purple and black. That’ll teach me! The rocker now sits pushed over to the far side of the living room. Bad rocker!
Yesterday, I was, as Judy Tenuta, says, “bloated with self-esteem.” I gave myself a B- for filling a garbage bag with clothing for Goodwill and making two salads. An A+ day would have been one of two tasks AND getting dressed and putting on makeup. I have stopped comparing Before and After now and begun to accept my limits. Today will be a A+ because, Heather, Rodney Roll and me are headed for rehab – where they will no doubt torture me with repetitive balance exercises. And, as my handwriting is now so spidery and awful, I am going to start practicing printing the alphabet today, as well. Let’s have a little round of hope for brain plasticity. Modest goals. Small recoveries and victories.
I’ve been thinking of Dylan Thomas’ poem to his dying father: Do not go gentle into the good night, Old age should burn and rage at close of day; Rage, rage against the dying of the light. I quoted this to Heather last night and added that I felt nothing like rage. I’m noticing a slow softening. It’s a quiet feeling – not an unnatural feeling at all. If you are healthy, or young and ill, if you are curable, maybe then rage is appropriate. It’s been 11 months now for me. Technically, three of those months past my predicated expiry date. Not a good time for that sad and useless cry of life is not fair. It’s a good time to visit Marigolds.
Saturday, 23 June 2012
For weeks now my balance has ranged from comical (picture a baby trying to balance on its feet while ignoring a load in its diaper) to downright dangerously precarious.
Up go the steroids (and all their ugly little side-effects) – but still not a high enough dosage to actually have more than minimal impact on the drunken stagger. But now I have Rodney Roll.
Weeks ago, I would have announced that has joyfully as telling you I had to get ugly black lace up orthopedic shoes. But after they tortured me with a cane at rehab and then let me try a Rodney, I’m here to say that yesterday, when Heather brought Rodney home from the Red Cross, I moved around more in one day than I have for the past month. I can walk a normal human adult speed! I can walk backwards. I can turn corners! I felt like I had lost a 100 pound weight off my shoulders. I was downright cheery.
I’d had no idea how much this particular disability was depressing me until it eased.
Here’s to simple, well-designed technology. Let’s hear it for oar locks and simple computer applications that don’t require days of learning curve. Let’s hear it for wheel barrows, good strong tools, my little triangular bead pick up thing.
Friday, 22 June 2012
It’s 5:00 a.m. Still night-time cool and damp but the sky is light. I’ve had roughly four hours of sleep – the usual amount when I’m taking steroids. I’ll stay up for a few hours and then suddenly run out of gas & sleep for couple more.
I apologize for my silence (again) – and this will likely not be the last time. Lately, my life has shrunk down to a daily effort to stay awake and find ways to cope with symptoms. It takes an hour to face the task of moving from a sitting to standing position, without toppling over and there may be one of two amusing slapstick stores but I find they are wearing thin. I asked The Dave where I might find help and he made some inquiries.
Yesterday, I was assessed by at Rehab. I attempted to stand on one foot. I attempted to stand with my eyes closed. I was waiting for them to ask me fly. Why not? Just about as feasible an idea at this point. I was astonished that I could do some of the tests and bombed completely on others.
They got me a cane to try. Oh great, one more wobbly limb to think of. I hated it. I do not have the élan of Dr. Gregory House. I thudded up and down, protesting, doing it wrong (apparently). Next came the four wheel walker – a device I regarded earlier with complete horror. I whipped along, did fancy turns, went faster than I’ve walked in a year, until Gail, the head physio lady, ordered me to stop turning pirouettes. I want one. I have a medial requisition to have a loaner from the Red Cross. I don’t care how it looks. Too late for that vanity.
It’s now at the point, where Heather has stepped in and is doing almost everything in the house. I’ve reached the point where I’ve stopped thinking this is optional. I start to cook, walk away and forget (momentarily, so far) that the stove is on. I get out of the car and leave the door hanging open. My short term memory retains a full two seconds of anything.
I have no idea whether the brain edema (swelling) is coming from radiation or whether I’ve sprung a few new aliens – in either case, the only help for it is steroids. I weaned off them after radiation and had a couple good weeks. But edema kicked in with a spectacular field goal and soon I was seeing triple, falling down, had zero appetite, headaches and just for something different, started throwing up. Back to the Decadron.
Two days ago, I started recording my meds because it is standard now for me to forget what I did 3 seconds ago. Did I take the Decadron? Or did I think I took the Decadron? You see the problem. So. I wrote down my a.m. dose – 2.5 mg. I wrote down my afternoon dose – 1.5 milligrams. No. Actually, I wrote – 3:45. Looking right at my notebook, I wrote the time of day, starting straight at my book, absolutely convinced I written the dosage.
I sleep 12 or more hours a day. My favorite pastime is sitting on the balcony with out potted plants, cheering buds to open. I identify with the plants – content to be out in the sun and fresh air doing little else than enjoying the weather. I’m also watching a lot of stand up comedy. Occupations that take zero energy and are good for the soul.
I’ve been noticing that my green crochet sweater has been hanging on the back of my computer chair for a week. One day, when my energy is at a high of maybe…oh…50%, I’ll cross the room and hang it up. Meanwhile, you’ll find me sleeping.
Sunday, 10 June 2012
It’s 6:00 a.m. The steroid alarm goes off in under five hours, so I’m forced up, sitting on the balcony, listening to bird song. Bird song to me. More likely musical warnings from the birds to stay the hell away from their tree. It’s cool and misty. The spring leaves are glorious in soprano green.
And I’m cranky.
Lately, the meds and the lack of any kind of upward curve in symptoms disappearing is getting me down. One hopes, almost expects, that it would be steady road towards improvement, but the side-effects of eight months of medical genius are not quite that cooperative. Makes sense, really. Like trying to recover from the effects of lying in the trenches of WW1 under gas attack and then following with a visit to Chernobyl.
Oh yes. I am grateful to be above ground. Seeing I have no experience with the other.
At first, I was so grateful for that, it pushed all the other little stuff out of the way. Now, nearly nine months later, I find this limbo state difficult. I never know, day to day, what to expect. Monday, I’ll get up and barely be able to wobble to my feet. My vision goes out. The world looks like a triple-exposed photograph and my feet can’t feel the floor. Never mind the way-past-mature-memory lapses and cognition impairment. Tuesday, I slide to sitting position when I awake and, strangely, all that is nearly gone. I’ve learned not to count of Wednesday, though.
I try not to whine. To you or myself. But. It is frustrating beyond belief not to be able to plan a day ahead. If I make a date for company at home, will I be reeling to answer the door, bumping into furniture? If I’m brave and make a date for outside of home, can I walk 50 feet without staggering?
Small chores, absolutely including mental ones, are often totally exhausting. I can do them but I’m apt to sleep off the fatigue for hours afterwards. Focusing my mind, through the radiation burn and meds, is like running the Olympics some days.
Yesterday, I finally gathered enough will to start applying papier mache over my plastic radiation mask. Not having the energy for creativity turns out to take energy. The mask is huge and I plan to cover it in all kinds of whimsical and meaningful images, and with beads, naturally. I’ve had a good time thinking about all the good skills and memories that are tucked up there in my beleaguered brain. I figured I’d start gathering some of them in visual form before I forget them.
I apologize for the long silence. I know some of you drop in to the blog to check on me and find it disconcerting when there’s a long gap. For my friends – Wendy has a list, should anything dire occur. You’ll be notified. For now, I’m still above ground and not at least having new side effects. But I may go quiet for spells, depending on whether it’s a Monday or a Tuesday.
Love to all.
Tuesday, 5 June 2012
I am posting this with great trepidation. My friend Peter is a proud, independent Brit and would never ask for anything. I was trying to do a private email campaign but there is no time. So, I’m blundering in here – hoping that my intentions are understood.
Beadsmith, Peter Sewell, my lovely friend, is dying of cancer. A very short time ago, he was diagnosed and given roughly six months to live, but the cancer has proved to be much more aggressive and Peter is now in hospital and time is drastically short.
His family and beloved partner are suddenly facing not only this terrible loss, but an unexpected mountain of expenses, including planning a funeral.
When I was diagnosed with cancer, I couldn’t work and lost the part of my income that paid for frivolous stuff like food. Many many good people quietly donated to a bank account for me – and it was, to me, a miracle. So needed. So surprising. So gratefully received. There is nothing cold about cash when times are desperate and no wealthy relative is due in town.
Now I know how the people who cared about me felt. How much you want to do something in the face of such sorrow & distress. How much you need to find some way to reach out and help when all your words sound trite and useless and you live an ocean away. I’m crossing my fingers for 6 degrees of separation, folks.
This is Peter’s paypal address. Many of you know him from Facebook and if you feel you’d like to help and can, you can send a person gift through Paypal to: firstname.lastname@example.org You will receive NO tax receipt, NO goods and services. All you get is to help a little.
Don’t think a small gift wouldn’t help. If you are cash poor, loving thoughts and prayers are also good.
I will trust in your better angels.