The other day I decided that all of my feelings are equally important and chose to sulk and be angry for a while, thing is once I made that decision the angry stuff just dissolved and words started dancing next to each other in my head trying to make poem patterns. Apparently I just needed to be true to me. I am certainly not cheerful 24/7 and i need to document all my moods if this is to be a real report on my journey.
Today i have a task - new print ads for both stations, images and text so I am toying with a couple of concepts. Do I want something I can build a campaign with or just a couple of eye catchers to run intermittently? Both?
I managed to give myself a brain freeze with my sorbet this morning and green and yellow were added to the palette in last night's dreams, signs i cherish as the promise of in skull progress. Some nerve somewhere is getting a message through - very small but very important especially since I walked my left side into the doorjamb this morning instead of through the door. I would bet I have no aura or energy field on that side at all...no awareness of proximity to people or things, talk about being blind sided.
Still too early to call the hospital so I'll stop by later to report on my blood count.
LATER :
Good, one less stressor to deal with...my blood count is adequate and I am approved for cycle three to start on Monday which gives immediate shape to next week. Control and structure, two things I had never recognised as important to me - I thought of myself as happy go lucky, go with the flow and haphazardly organised in an organic sort of way.
I mean no one has to teach a green pepper how to grow..
instead I find too much shapelessness chokes me, puts heavy canvas folds around my thoughts and blurs the edges of my intentions before I get to see them and hobbles my thought process as if it were a restless horse.
Maybe I can figure out a way to put a possible outline into place for each day, open to change at a moment's notice rather than holding eternity available and malleable. Infinity echoes with bitter notes in the crevices of the skull, too many possibilities each trying their tune at the same time.
Cycle three, half way there and my mind skips forward to thoughts of scans and getting to see if this is working...and how much is left to be done, I can't just be content that I am maintaining my immune system (or the mangoes are anyway) and working slowly but steadily back to optimum health, staying in the moment and wringing all the goodness out of it..this moodiness is probably partially chemically induced and I can see how people think they are going crazy.
Those of us doing chemo have three things in common beyond the obvious. We pee all night, we are as thirsty as if we are in the desert and we feel the edges of reality warp and bend around us. We live in several planes at once. It is very disconcerting. Interesting and very uncomfotable. Something to write about someday.
I was the only one hooked up to chemo bags today(well Monday). Everyone else was there for diagnosis, radiation or blood tests.
The first day of every cycle is a three bag day, a litre of saline solution for hydration followed by cisplatin then followed by etoposide, always in that order. once the chemicals are hooked up i get an anti nausea shot and a small steroid shot into the line before the drip is started.
I suspect without the steroid shot I would really have a tough time with eating, still I am doing well, i snack on hummous endlessly, make myself fluffly scrambled eggs and omelettes and if all else fails (even mango sorbet!) I blend up a vanilla protein shake that promises all 22 amino acids and all the nutrition that i could need.
Bottom line, I know what is needed so I find ways to make it happen..poor nutrition = weakened immune system= they stop the chemo till you recover enough to survive it= slow down in treating the real issues. Not what I want, and here I do have control.
So I eat. Right now it is 4:40 am and i can squeeze another hour and a half sleep out of the night.My sister and I are trying different arrival times between 8:30 and 10:00 to see how early I get hooked up.Today (days two and three are one bag days, just the etoposide) if I finish by 11;30 and it is bright and sunny we are going to the east coast to get exactly the picture i need for the print ad then we will swing by the Beach House where they do a buffet lunch for BDS$36 (approx US$18) on week days. Supposed to be good.
Anyway, I am going back to bed to nap until at least six thirty, keep my feet up to avoid them turning into swollen lumps, then my newest shower routine (definitely need pix to demonstrate and describe how this works, it sounds awkward) then back to my second home to get 'on line' again. First though some Rocher chocolate balls (two) those great hazelnut thingies...maybe I'll get some pink or blue back in my dreams...
My words and dreams are coming back. the words are rushing into my head like a waterfall un dammed, last night was torment as phrases swirled through inviting thought, encouraging expansion while I was locked in sleep. "open up your heart and let the sun shine in on the red, tattered fragments of might have beens'.
and the dreams, all in brown, no other colour yet, strange symbols - the perfect pair of pants yet the seams unravel minutes after i put them on...but they are back and the chaos is mine to glory in.
I have talked about the loss of my dreams to most people who asked what was radiation like, i never knew so few of us retain dreams into waking...I have always dreamed vividly and frequently horrendously, night terrors, night mares - so to go a single night without a dream shocked me and was worthy of comment. Brown dreams are good, earth and renewal, foundations.
i'll dance in Tennessee this weekend in my dreams and the torrent of words may slow long enough for me to capture one or twenty on paper.
In the meantime, it is my mother's birthday on monday and I need to do something outrageous enough to knock all thoughts of cancer out of her head, The poor woman measures me for my shroud each time she looks at me, and I have reached the stage where it is easier to spend minimum time with her than struggle with the immense negative vibe she carries. Maybe I'll give her my last will and testament for a birthday card - anything to remind her i do not plan on checking out soon, so alll this grieving is a bit over the top. And annoying.
Any way it is Friday and I may try going to the beach to exercise my wayward left side to see if i can coax it back home so I can run after the words.
so many things I could be focused on and I am all excited because to my mind I am, after drinking six ginger ales, uniquely qualified to have an opinion.
I left out all the caribbean made ones which would probably go heavy on the ginger and so have an unfair advantage when faced with benumbed taste buds and went with seagrams and canada dry. Seagrams was 60 cents cheaper but I have never let cost be too large a factor in what I buy; I either save up until I can have what I want or have one perfect fruit rather than three discounted seconds.
We never treat ourselves as well as we deserve!
And the winner is canada dry, a crisp clean flavour that bites the tongue and clears the palate with just a hint of sweetness to offset the tang. Seagrams, on the other hand is quite sweet which means the thirst rebounds minutes after you think it satisfied..canada dry, I wanted more but was content to feel it in my future, each bubble bursting satisfaction on the roof of my mouth, each swallow calming my need for liquid.
No man is an island. John Dunne wrote that, and although we work very hard at being separate and alone he is right. I sit on my dawn balcony to meditate and hear your voices, feel your fingers supporting me, I feel this tremendous sense of being, of I am and I am awed by the fact that so many strangers are willing to look, to offer love and encouragement.
It is the best of what we are, The universal moments that make us cry at Lassie and ET , that make us stop and offer something. It makes me cry for the sheer joy of knowing you all although we will probably never meet in person. it makes me wish I had a huge secret that would change the world to tell you to thank you all.
I don't, but check it out...canada dry rocks!
I have been watching myself quietly for the last ten days or so.
Some decadently lethargic creature has taken over and decided to just go with the flow because it is just too much trouble to push and shove against the sheer weight of unfeeling flesh and the low blood sugar jitters that assail me from time to time despite my best efforts.
As promised, food tastes odd and alien, even my favorite teas have become unappealing, sending me running to coffee in those moments when it must be a hot drink. Otherwise fruit (especilly mangos still) and ginger ale quench the ravening thirst that holds me hostage.
I do dance a little more every day and last night I dreamed for the first time in weeks. A dark little dream of fighting to regain function, but the planes of my cheekbones were less convex and although my eyebrows were faded to mere etchings along the bone, my head gleamed with curls and colour - definitely a dream.
The eyebrows have been fun, a gradual change from dark, well-defined arches to highly stylised suggestions of a brow echoing starlets' glamour and wideopen eyes designed to tug at heartstrings.
My voice as well is flirting with the sultry. A husky, breathy sound promising secrets, delivering a sullen complaint about the stabbing pains when I breathe, about the acid in my stomach, about the fact that it is taking so long for anything to change.
Tired is a concept and a dream until you have chemo and radiation. I feel like a pool of water spilled too wide to respond to the breeze that wants to evaporate me. The firm intent to move formed in the brain stays there, unmoving for endless spaces of time witing for a spark, for something to trigger forward motion.
Even backward would do, something beyond this carpeted plain that whispers of sleep and darkness, of hiding out until it is all over and my parts unite and cooperate again.
Apparently somewhere in those plastic bags there is a chemical erosion of the spirit and the will that hides behind the jitters and the strange tastes and smells. How far down must I go? Is this the time for battle or surrender? Increasingly I wonder who will come out on the other side of this? Me? Less than me? More than me?
The horrors of a control freak having to let go! The surprise to realise that the thought of letting go is appealing. To float away, no tension in the sinews, to just be foam along the edges of the sea....
Looks like I am back on track and can resume chemo next week, which is a strong suggestion that although my cell counts dropped, my repair department is working well. Hooray for determination and lots of supplements!
I have also discovered that while food has become unappealing to my mind and I have been eating because I must, there is a secret food lover inside me who gives little moans of pleasure and delight when perfect scrambled eggs combine with perfectly crisped bacon and when the silken golden ambrosia that is mango juice or mango sorbet is slding down my throat. She got quite worked up over the rich beefy stew liquor today as well.
Mango sorbet was key to another discovery too. I do not currently get a brain freeze if I eat it too fast. I would guess that too is a result of delayed communications with my cpu...lets just hope I don't get a massive all at once connection, my head might explode because of course, the minute I didn't get a brain freeze I kept trying to induce one...so now I am running low on sorbet.
This weekend is a bank holiday today and then another one on Monday, with the weekend just being itselfand it was amazing watching pepole go crazy in the supermarket stocking up on staples when they would only be denied access for one day and even then every gas station has a well stocked 24 hour place that will be open. I was there because I had run out of eggs and yoghurt and the smell of gas stations is too strong for my super smell senses at the moment.
So it is an ambivalent time, I am drifting through days, filling my mornings with things I want done so I can surrender to sleep in the afternoons if I need to, but my mind turns things over idly and puts them back as not urgent and I have a tendency to come to rest and stay at rest until my body requires me to move for some purpose of its own.
It is a little unnerving to realize that my mind does not think it needs my body, and vice versa. It was an oh shit moment when I noticed, because what the heck is keeping the parts of me together? Habit?
I don't know if these weird altered states I slide into are radiation or a form of insanity. I was sorry to hear Mr. Pausch reached the end his battle, he has helped me so much to get things right sized when I start listening to other peoples' fears and lose track of reality.
I am alive and for the most part, very well, still writing even if my poetry has become an occasional verse instead of a daily celebration, and I am sure the boundaries of both my physical and metaphysical beings will stabilize as my nerves return to normal communications.
Perhaps they'll connect long enough and tenuously enough that I can write about watching myself disappear like dew running from sunlight. Invisible woman riding the wind like steam, a rainbow waiting to happen.
Time to sample the stew, it should be melt in your mouth soft and rich with nourishment. Doing my bit for those laboring cells, rebuilding one nucleus at a time.
My head has been filling up with words. Rushes and torrents of words lining up like school children in first day of term uniform, hair combed, teeth gleaming with so much to say.
But I don't want to talk. Don't want to eat either or walk around. Knowing I have slipped into a chemical trap is not helping me break out of it either although I am drinking plenty of water to flush my system.
I can still see colours so I am not totally depressed, but everything is an effort and I have spent hours over the last three days just curled in bed going through various meditations to boost my immune system. I failed my blood test, my white cell count has dropped more than considered safe and I have to be tested again in five days,
There is nothing I can do to fix it, there was nothing I could have done to prevent it, like the depression it is part of the package. Well, it is miserable but still better than throwing up all the time! I STILL AM NOT HAPPY ABOUT THIS!
There is no way to know if the stuff in my head is going away as no further changes in symptoms have happened but my voice has noticeably hoarsened over the last three weeks so either the lung is really pissed at the chemo or it got wken up by the multiple biopsies and is flexing some cells before giving up the ghost.
So what was good today?No lawnmowers so I got to sleep for a couple of hours. More mango sorbet and juice. I could hold a book and concentrate enough to read. My head is not empty anymore. I almost dreamed last night. At least i was sitting in my sleeping head waiting for a dream, which is progress..depression is just a chemical imbalance not a lifetime commitment.
Hah! I logged in and blogged! I won!
My determination to not let the experiences of others influence me seems to be workiing. I think I am feeling the side effects of my chemo - my own side effects dictated by my genetic makeup and general state of health.
I have completely lost interest in food. neither scent nor appearance exercises the slightest appeal or challenge and eating simply because one must is not that much fun. Although the flavour of mango sorbet still seduces me and I am indulging my current passion by having sorbet or mango juice AFTER the fish or lamb chop or grilled veggie pizza. It keeps me eating.
Side effect number two is severe constipation - three words as remedy, salt water flush, followed by increased fluid and fibre intakes. and number three is a remarkable tendency towards the morose and impatience with other peoples' foibles.
I had this week beautifully planned. Recording with my client miss H today completeling the current series of shows, sending my sister back to St. Lucia tomorrow for a week to give her a much needed break, dreading the time I will be cut off but plannning to get ready with rest and nutrition for cycle two..
Unfortunately miss H cancelled this morning because of personal problems amd my circs mean I am not available either this week or next week...the show is not a problem because I always have material available but it upsets the balance in the current series a little AND I had wanted all the new recording done so all I would need to focus on was editing and assembly. Like real sick leave for a while.
I think my sister had a moment when she thought I was going to say I would need her to stay (there was a half second when the thought started to form but one of my rules is do not offer something unless you are sure you can follow through and do not withraw offers once made unless circumstances are dire,.)but I can manage and there are all those people who said call me if I can be of any help I already set up my ride to the hospital on wednesday so it is all good. Except I shall miss her.
Good practice being a grown up for me! Anyway, it will all work out in the end,I have this new idea for choreographed apoptosis to implement...thanks bnatural 
I use a great deal of visualisation in my daily meditations at the moment, working to encourage my left side back on line and other things I want to achieve. For the most part my brain comes up with fairly standard images, knights in full battle array, vacuum cleaners, phoenix arising from the ashes type of thing but there is one that puzzles me, and when I shared it with my sister yesterdat she laughed so hard she almost drove off the road!
I have a picture of this perfect brain, correct pressure, correct fluid balance, correct everything and it is zooming over sundappled limpid caribbean sea waterskiing. I do not water ski. In fact I nearly killed myself the one time I tried.
I was successfull in getting up on the skis, unfortunately it did not stop there. I popped right out of the skis and found myself first airborne for a while and then under the water hanging on to the tow bar for dear life wondering why they didn't stop the boat and why I could not reach the surface . I found out later that those in the boat could not figure out why I didn't just pop to the surface in the wake like people usually did.
Most peple let go the tow bar when they fall off. To me it was the only solid thing I had and I was keeping it, Besides, nobody mentioned 'letting go'! I have never fished again because I know what it feels like to be reeled through the water too fast to do anything and I have no idea why this would be an image that makes my brain feel confident. I am learning to not worry much about 'whys'. Just follow the path and ski if that's what it takes.
seventeen to go and so far not a side effect in sight., well my feet have turned into cushiony puffy things but that is a keep them elevated ,drink lots of water fix - done that before.
they have added a very tiny dose of steroids back into my mix, helps protect the organs from lasting damage and the anti nausea shot works beautifully so I will be taking the tablets diligently from tomorrow morning. Why throw up if you do not have to?
Now I am 'free' til wednesday when i get my blood test to check platelet, haemoglobin and white cell counts - all expected to drop but must not drop too far. My job? Keep the bone marrow producing rich, strong, highly effective immune system cells, keep eating well and rest with just the right amount of exercise.
Last night i danced , used both feet and just shook some booty for ten minutes which was when I started to wobble and falling flat on said booty became a serious possibility . Tonight I will push for twelve mins - try reggae rather than disco jazz fusion. The left leg had trouble keeping up.
Had trouble sleeping the last two nights which is actually better than falling asleep mid sentence! And people take drugs for recreation... yeah I know the drugs are different but there is a great similarity in some of the FX euphoria, nodding out, feeling really really good, strong, happy healthy and none of it is real.
My butt is still so numb I thought my left arm had stopped moving altogether while I was showering this morning, until I realised I was sitting on my hand.How the hand slides under my butt, behind my back, folds back along itself with no warnng well I am in awe. lefty the escape artist!
Today I caught sight of this rather fragile looking bald woman coming towards me only to realise it was my own reflection. so I have to work on my presentation - in my mind I am making smooth strides and if not exactly flowing at least moving smoothly as though my parts work - again it was the left arm rather aimlessly floating off to the side that interrupted the illusion and the role of Claw has been a favorite for quite a while, so anytime I take my attention away, the hand contorts and looks poised to just do someting on its own. it twitches spastically and points at people..not much else.
And there is not much else going on, the next two days will bring more information on how I am processing my particular set of toxins..the two feral cats that look to me fir food are sniffing rudely when I go near them so there must be a je ne sais quoi about my scent that they pick up. i taste salty to me which pushes the need for lots of hydration and
i am suddenly sleepy so I am heading for bed immediately.
It was a lovely peaceful weekend, no nausea or weirdness at all except I must have dumped several gallons of water and while it is nice to have my feet and ankles back to their bony little selves, the quadriceps in my right leg has taken a lot of strain and is doing a hot and slightly swollen sulky thing.
I think pushing up from the commode is putting a torque on the thigh, now if people who offered to install grab bars would only follow through! I have mentioned it before, but do not offer to do something and not follow through. Finding something I thought taken care off still undone can bring me to the edge of tears and over.
We have to trust our caregivers completely because if we cannnot it is as though the ground disappears beneath our feet. One of the most difficult things for me personally has been to say of various things, I cannot do that any more and I will fight to use both hands, to still record and edit, to claw back every bit of ground I have had to relese. So if you tell me the bar is there I will just reach for it the way I reach for everything right now, trusting it is where it should be, a surrender on a scale I could not have imagined six months ago.
There is something about faith bobbing at the edges of my still so empty mind, what it is, what it is not, the strange feeling that the more I focus on myself, the me with no decorations, the better I see other people and how, suddenly it is so easy to forgive them for being human because you can forgive yourself finally because until you look at this particular wall and work out how to climb it... man I hate it when the thought is waiting for the words and the mind has nothing to offer.
But that is part of it, we are told perception is everything and feelings are not facts, truth and lies, they are my precious feelings and I will feel them, acknowledge them and not let them rule me. My perception is just that, mine and filtered through my misconceptions and thus suspect as a final arbiter.
Definitely a morning of questions.Maybe pancakes smothered in golden syrup will help.I can still make those!
apparently the hospital is still gripped by the possibility of industrial action,, variuos groups kept peeling off and going to meetings - the orderlies, the records staff, receptionists, doctors - including thr pharmacist who mixes the bags of cancer killing magic,
which meant even the superearly birds who arrived at seven and waited for the nuclear medicine department to open did not get hooked up till ten or ten thirty.
I had a tough time digging mysel out from under the fears I had not seen myself absorbing from other peoples' horror stories, plus I have been so careful to eat and live heakthy for the last eighteen years that the thought of willingly letting toxins -for no matter how good a reason - be pumped into my body well the reason didn't seem good enough in the dark dawn this morning - to write a book, a few more poems, do a few more radio shows?
It is fascinating how each new step toward recovery demands a new level of surrender to things I really do not like. This is better than sesshin for deconstructing ego and perceptions. A bag of saline took an hour and fifteen minutes to run into my vein, the two bags of drugs an hour and forty five minutes,
From now om I get to do the hydration myself, it will protect my kidneys and other organs (including ears - i don't think there are many deaf DJ's or audio editors around) and the nurses actively encouraged taking lots of vitamins and gave me pills to take in case I feel sick.
So far I have not needed to take them and as long as I dom't assault my digestive system - a little difficult when said system views habanero peppers chopped into just made at the table mayonaise and smeared over seared tuna as a tasty treat rather than something to run screaming from - with greasy fried foods and spicy foods I may not need to.
My goal is always weighted towards avoiding meds as much as possible, if I have a bad reaction it is easier to know which one is doing it if i am only taking two and it leaves me with less repair work to get on with, There's going to be a lot of that as it is, I saw Mr H today - my will be lung surgeon who recognised me from behind despite both baldness and residual steroid cheeks and i warned him that I am not planning on leaving much for him to do. he supports my efforts,
Well that's my day. Not very interesting really.
A lot of tension for a physical low effort event that left the back of my right hand bruised, Psychologically however, getting ready to go was very difficult.I did not want to do this. But I did and today was easy which means I will do tomorrow wthout a qualm even though there is no guarantee tomorrow will be the same.
One success means it is possible to achieve another, every positive step means the next one will be made. No matter what else I absorb from others, what i see and hear in the faces and voices of my docs when they try to get me to listen to words like prognosis and statistically, I need to know in my bones, in every cell that my prognosis is my intent to live my life to the full, whatever that full is, and I never have been, never will be a statistic worth a damn.
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