Turns out I am a closet neat freak. Not that I mind a stack of books or a scatter of magazines around the place but if you are cleaning the floor everything gets picked up, wiped down and put away.you do not mop or sweep around the scattered flip flops, the bag of unread books...amd you certainly do not leave the mop broom and pail in a jumble in the corner when they have a perfectly good cupboard to live in.
Little reversals notwithstanding, my abilitiy to do housework keeps getting smaller. And apparently I have a very decided attitude on the RIGHT way to do housework. I am grateful for the help I am getting and keeping my tongue still in my head. And trying to figure out how to get my floors as clean as I prefer them to be - hiring someone may be the only way.
Cooking too is becoming more difficult and there is the mental toll as well, as it gets more difficult to do things, as the knives threaten fingertips, the temptation to not do raises its head. Don't risk, don't take a chance there are too many stairs, I feel dizzy, i'll do it later, tomorrow when i feel clearer... the reality is I need to push the envelope, need to do all I can manage and push for that tiny bit more and let us not forget no more 'you can do anything steroids surging through my blood stream either...so much to keep track of at times
The las couple of days I have slept four hours for every two awake, deep falling into a black hole sleep that I think of as a healing place where the bits of me that know how get busy putting me back together so I can dream again and scrub a floor.
When I am awake I realised that I actually am as patient as I have always pretended to be. I really do not mind waiting it is not just some zen exercise I practise.
So my blood tests are good, they are happy to poison me - I wonder if a mosquito bites me will it drop dead or mutate? Final word is Wednesday for dose one. Amd I am bothered by a sink full of dirty dishes. DEfinitely neat freak elementshowing themselves - or maybe it is simply that I still have some control over what happens to the dishes.
It starts today.
Chemo therapy.
I find i have a rather confrontational attitude about this. Over the next several weeks.. i will know much more twelve hours from now -my docs and I will be involved in a two fold contest, their job destroy all the cells that I do not need for complete and perfect health,
my job to support and maintain the health of all those cells I do need that are going to be standing in the line of fire and are going to take repeated hits before the bell rings.
My sister will stay glued to my side today. I tell her all my symptoms, physical and emotional so she can remind me if I forget to mention them to a doc, and she helps me listen to what they tell me and reminds me of specific questions I have. When struck with lack of focus use someone else's brain.
Anyway I am well rested as I did nothing yesterday beyond collect the 24 hours output of urine they want for setting up my baseline profiles I guess and I watched Neil Gaiman's Neverwhen, all six episodes ,in between pit stops.
Not at alll sure what or whether to eat this morning - nothing is appealing as it crosses my mind's eye. Perhaps yoguurt with a spiral of blueberry honey backed up with salmon oil capsules. If I don't eat I will be ravenous by ten and so low blood sugar I'll be shaking. Athermos of soup perhaps.
This is really a very scary time. I have no idea what happens next except there is a certainty it involves needles and a strong possibility it involves throwing up. Two things that I have always found i dislike intensely. Peppermint teabags - there is a hot water thingy in the chemo room.
Time to hit the shower and stop thinking and start doing again. I am sure I will have a tale to tell later.
My left ear has suddenly reattached itself to my head as flexible flesh rather than a piece of balsa wood. I can hold a phone against it and it goes...phone! I actually managed to put an earring in...and it stayed put.
This morning was the second mornig I swung two legs off the bed together when I sat up. Not that the left leg is any less numb, it just seems to remember being part of a pair instead of a wavery solo act.
I was reading yesterday that the brain is very inefficient at clearing away brain litter or dead cells.
so my holistic self seems to be on vacuum alert because I keep finding myself running my fingers over the brain stem area going buzzzzzzz trying to decide whether Dyson or Electrolux is the way to go.
I managed to record with my client yesterday, edited into two half hour shows and burned the CD and sent it off to the station. Great feeling, even though empty headedness is still my standard state, Apparently thought processes come on line only as needed, everything else is pretty much automatic. Eat, sleep sit quietly until it is time to move.
Went to the dentist this morning as i read it is a good idea to get your teeth and mouth fixed before starting chemo - saw my neuro on the way home as I need my films for Friday and he agreed it was a good idea, so why was it not on a little list of how to prepare for chemo? Handed out by the docs?
He also approved the list of supplements i am taking...actually I wasn't looking for approval, I was just making sure someone knows what I am taking and will be giving the same list to the chemo team on Friday so if there is a problem someone will catch it before any harm is done.
Still no dreams, but slightly less jumpy. Off steroids completely for four days now - i weighed at the neuro's office and have actually lost two kilos despite the enormous quantities of food I have eaten over the last six weeks. Go veggies! Now if I can just lose the chipmunk stuffed with nuts lookalike face....the receptionist at the neuro did not recognise me.. heck sometimes I don't recognise me! I figure another two to three weeks before it goes and I will forget about it again in a couple of hours, or sooner.
Ther's this little curl of acid in my stomach every now and then which tells me I have not really looked at Friday yet. but that I want to dig at it. I keep taking a deep breath and say relax because until Friday everything is conjecture and I am better employed vacuuming inbetween the crevices in my brain and figuring out how to floss thoroughly with just one hand.
I am overwhelmed by the caring and support being given me here.
I just looked back at your comments to my last entry and felt as though a multitude is walking beside me to help keep me on the path as I falter at times. It was as though this warm spot swelled in my chest and exploded through me like the best fourth of july ever. Warmth, liight, energy. A tangible feeling as though I am truly touched by all of you.
I thank you all with everything I am.
Today is my last steroid. They started the taper down process very quickly after the radio therapy was complete, 9 days to get me off completely so tomorrowI take nothing at all.
I can already feel a difference over the last four days, the drive for food is fading, the swelling in my right foot is going down and my mood is touched with melancholy. I feel vulnerable rather than a tower of power, which is actually much more relaxing.
I have spent two days doing very little beyond drifting in a semi sleep that does not make me feel more rested but is soothing somehow and I visualise all the myriad nerves in my brain stem getting room to reshape into their normal positions and starting to fire up little sparks of communication to my left side.
I have this continuing sense that my body knows what needs to be done, I am suddenly craving yogurts and whole grains, meat is suddenly unappealing and everything I feel like eating will be amazingly supportive of my digestive system. Sweet has reappeared on the menu but only in the form of honey, natural healing agent that it is.
And my current plan is to do much more nothing today and tomorrow, just rest, not even trying to think of what next and how to and what will happen Friday when they stick the needle in the back of my hand.
And I can bear in mind that I am not actually required to be happy this is going on! Neutral is a fine place to be at times!
This morning I cried. It was literally all I could do for some reason. my thought processes have beciome unfamiliar to me and i sit with the inside of my head feeling like a shiny brass bowl, empty apart from the occasional flicker of images I cannot quite see, sounds I cannot quite hear.
I have not dreamed a single picture in my head since the radiation started or ended.I am not sure if I am actually sleeping, pr just in some extendeds meditation state and my eyes feel odd as though they are trying to see invisible thuings that are ver importasnt but they haven't caught the focal length yet.
I want a massage very badly to let my body know it still exists in three dimensional space and time.my edges are turning to smoke on the left side.
It is at the same time the most beautiful and teriffying experience of my life because I have no reference at all for where it will take me and I have no idea if this is something you come back from. I am not sure I am sane right now.
Everything has become a tremendous effort to move. To get out of a chair, to work with tiny little weights or do lean ins against the wall to maintain muscle tone.
I am, as much as I can, still producing; a DVD REview programme and I would like ver muuch to work with my favorite client on her next series of four half hours, because then when I start chemo on July fourth I can take a real break to see what that new path brings me.
But for another first, I am not DRiVen to make it happen,I can contemplate saying this is too much right now. And it makes me cry because I have always been able to find a way to make things happen, because I have always believed . I have never had an empty head and I don't know how to use it.
I very rarely spend a great deal of time soul searching any more, I do my best to practise what I believe and try to be open to learn because as I got older so much of what 'mattered' turned to passing fancy, lost in time.
I have strong beliefs that serve me well and I have an immense faith in the richness and rightness of life, no matter how inconvenient it may feel to me at times. Is this faith faltering? Or am I just hitting a wall so far beyond anywhereI have had to go that I have to stretch? Or am I literally feeling cells dying as I need them to, is this a purely physical phenonmenon of literally emptying out internal destruction on an unprecedented scale?
Maybe I just need to get comfortable with NOT knowing. Just rest in the empty brass bowl and look for dust.
Okay, this hair thing is TRULY freaky!
I have woken up looking like a delapidated dandelion who stuck a finger in am electric socket!
Hair is scattered all over my pillow, drifting to the floor and my head has large swathes of bright pink, slightly sunburned looking skin smeared between my usual silver locks. And so much hair!
If I had not been waiting for this, planning my neat little report on radiatio hair loss 101 I might have been doing a great chicken little impersonation clutching at my frothing head and whining NOOO!!!!!!!
For anyone with really long hair this could be a truly horrible moment. I look nothing like myself. the facial rounding from the steroids is at an all time high and even my throat is puffed up like a strange bullfrog on the verge of sending out the major dinner call. My profile is a plasticine blur of soggy features that do not look...finished somehow.
It really is nasty! And emminently fixable of course, cause once my sister is up and takes the photos
i will be gently polishing and clipping every last strand away, sliding in my most outrageous earrings - which will look better when the bullfrog look goes down a bit-,
I have this collection of ankle length patchwork skirts and I asked my sister to sew ribbon straps to them; turning them effectively into mid calf length dresses I can drop over my head and belt, add hat, sandals and light jacket and I am a garden party girl. The key is comfort and simplicity for me.
Well, actually right now the black hole where I keep my stomach is stirring so needs must find food...
My sister is amazing. She has some of my favorite sparkling apple juice on ice to celebrate my final nuking on Thursday.
It had not actually occurred to me to celebrate because starting today i start a twelve day cycle taking me off the steroids, so I had not actually got my head around that i will have achieved a goal.
in fact there is a large part of me that does not seem to have any ambition beyond the next nap, a result of the radiotherapy combined with the incedible surges of energy from the meds perhaps. My body seems to have taken over in some odd ways. It has definite opinions on what I eat, how much and when.
In the supermarket right now my hand shops by colour, greens and reds jump into the basket, fresh crisp okras are particularly appealing apparently, and I have noticed that all the meals i cook contain all the flavours that ayurvedic patterns recommend.
Suddenly sugar is a once a day affair instead of a craving I resist in an effort to contain steroid weight gain - still holding at three tp four pounds up over four weeks now.
This morning I was so frustrated i yellled there is no freaking way i am going out of the house dressed like this! For everything twisted and caught up on the left side and the effort to get things into place drenched my carefully showered self with sweat again. The hardest thing about the shower is every time i close my eyes I start to sway and every time i wap into someting. i bruise.
Earlier in the kitchen I knocked the bottle of bleach off the counter and watched it fall onto my foot that could not avoid it. Although it doesn actually hurt much it has bloomed a dusty grey blue and i noticed a couple of people remarking the number and apparent severity of my bruises. I truly do look battered!
As i am also still doing some prgramming at home - managed to set myself up an effective isolation area so i record in the wee hours then ,when the rest of the world is heading off to work, edit and assemble so the new dvd review program is going out each week and the client is happy - but today I think, no, I know,I pushed a bit too much because the thought of anything more energetic than blinking feels like too much. Not a feeling I can EVER remember feeling before.
So two more shots of radiation, down from ten. Some of my fellow sojourners have 25 or more sessions to go, but the brain does not take so much especially whole brain as mine is.
And apparently a lot of the actual effects are only just beginning to happen and will continue to develop over the next couple of weeks thus the brief hiatus before scouring my system with amazingly toxic chemicals.
My cousin who had chemo two years ago thinks i will find it really tough but I have teeth drilled without anaesthetic because I dislike needles so tough is a ver individual thing. I certainly am not expecting to be saying mmm mmm good! but until the third week I will probably be fine, drinking extra water to keep flushed, supporting my immune system and resting (!) as much as i need.
Well, that is today's plan anyway, I will probably have another one in two weeks.
Time for a cup of PG Tips tea and a digestive biscuit. I am this eating machine at times and the hunger is like ablack hole that descends and demands supplies, it is best to just give in or I get really edgy and feel trapped, not good and not necessary when both tea and biscuits are just in the kitchen!
monday, and I wish I coulld skip down the stairs the way I used to and march off east watching the cabbage white butterflies and all the other fragments of colour that sparkled through my mornings. I could certainly go for a walk, but skipping and drifting are memories for now.
However, there is much to be said for making bacon and french toast from scratch at four in the morning.
And enjoying the taste as something has changed, I no longer feel that exact, precise divisiondown the centre of my face, That perfect dentist line of numbness. My ear on the left feels less stiff deep inside and even the lobe feels flexible. Swallowing is easier, my throat can tell it has something in it, something with flavour. Yum!
In many ways I am very lucky, being a dancer has meant i have lived as part of my body for years instead of just letting it carry me about, so I know what it feels like, I also know what is currently on hold.
i also have moments of complete panic when something so in the bone second nature does not respond and it is easy in that moment to see forever without. and i miss my left side.
I miss the ease with which I held down cloves of garlic, chopping them to mix with good food. Even supporting a cheque book to sign a piece of paper becomes a project and I am having to discover an unconcern for hurry, a need to let the impatience of the others in the line be their problem, not mine because I am actually doing the best I can.
I am secretly very grateful that i have never minded waiting my turn, so now I take my turn with reasonable equanimity - oh my daily i ching just popped in..
this is your I Ching for Monday, June 16th:
Sun: Loss,
In this period, you must try to eliminate all which is superficial in favor of what is essential. You must not consider this as a loss as what you lose on one hand, you gain on another. To be lucky, you must concentrate only on what is really useful.
The other day my chinese horoscope talked about venous insufficiency while i was looking at my usually neat feet swollen around the ankles till they looked like soggy baguettes. I drank extra water and kept my feet up. They improved.
There's the part of me shaking her little head saying this is soooo not what I planned for 2008. But in some ways it is more interesting because all of it is a surprise and someways a trial because there are moments when I know the next step, no matter how wobbly, is mine to make. There are so many people there to help, to watch and care but in the night when i swing my legs over the side of the bed to make french toast so my stomach is well prepared for meds, it is my bones that carry me, my breath that has to flow and move me forward.
And every now and then I weep for my strong left side, because it tries so hard to do its job, and doesn't understand WHY and all the words I have ever known in my world cannot let it know, cannot reassure it that we are coming back, that this is just today that we are doing everything we can.
I have found a pair of sandals that will cling lovingly to the shape of my left foot and stay on without trying to fold the toes under or leave me with the odd sensation of wielding a quarterstaff at the end of my leg.
It is sheer bliss not to have to look down every few steps to make sure I am fully shod. Although numbness and lack of feeling have turned out to be ver 'flexible terms' - i can feel hot, cold, pain if pressed deeply, although it is more and more the bones that feel, not flesh, I could cut myself and not notice till I smelled the blood - enhanced sense of smell is one of my new super powers! I cherish both my feet, especially the one currentlly with its mind elsewhere.
When this all began, like many I had gingivitis, tinnitus, arthritis.Markers of time, benign neglect, the wear and tear of living in a loud rushy world that bowls past us if we let it.
My periodontist would be hard put to find a pocket by a tooth right now, my gums cling tightly, not a trace of inflammation, gleaming healthy pink -and when I lick the back of my hand - the easiest way to check for scents of infection or thrush - my mouth smells like morning breezes off the sea.
My ears, for the first time in decades do not ring and hiss playing back the damage from recording gunshots in independent movies, unrehearsed bellows from method actors who whispered in rehearsal the occasional rock concert and tractor ride.
I turned my head unthinking and totally painlessly all the way to the left, the rotator cuff injury loosened by whaterever healing is starting to take place inside my cells and even the quiet snowflake tinkle of osteo in my neck is faded to a murmur.
Other random things are how incredibly efficient my digestive system has become,I digest everything I eat, producing neat, clean packages of fibre for disposal approximately every twenty four hours.
And today , well yesterday, I rested. Just ran the clippers over my hair bringing it to my usual cooler crop - it has rained all night so perhaps the weather is moving. I cooked a fresh vegetable fritatta with okra zucchini, tomato and onions and it was delicious.
My approach to meds is just what i really need so I am protecting my stomach from the steroids with food rather than antacids, I have everything on stand by and have discussed with my neuro how best to do their slash and burn to clear the ground for reconstruction and repair that is my job.
Sometimes in the morning when I sit outside with my morning meditation I feel hands wrap around my fingers and other voices weave with mine. My eyes just fill with gentle tears that wash out the things I am letting go of, those things I really do not need, that none of us need really.
In about an hour I will probably be sulking because showering is a major undertaking with only one side of the body enthusiatic about jumping about, but even there I have a routine in place. It's not much fun any more but it won't be forever either and clean and cool matter a lot.
Five more head shots. Tomorrow and Sunday off to give my 'normal' brain a chance to knit itself back together while visitors get to drag their sorry asses out of my brain stem taking all the tacky 70's decor with them.
So many miracles in every moment. And they are always happening I suspect. We just are not watching.-
Somehow I have reached session four of radiation without writing a word.
The days, far from being a vast expanse of time with five to ten quiet minutes where radiation pours through my brain first from one side then the other, are packed with so much.
Getting the water pump replaced on my car, rescuing my mother who's fuel pump died thid morning because she dedcided she could wait to have it checked out.
My sister's birthday on Monday.My sister's husband coming down with chicken pox at 57 and not being able to be here for her birthday as chicken pox is not high on the list of things we need added to my particular mix.
The sheer relentless drive that the steroid dose i am taking is putting my system through.I keep going on an energy that is finally starting to get soft around the edges although it revs back up every time I eat and eat i must to fill the cavern that has developed where my stomach used to be. Still no particular preference for food type, but my fluid/salt balance is so off that my cheeks are convex and there is not a line on my skin. Belly bloat too.
A heat wave does not help and I am struggling to keep properly hydrated while eating foods with natural diuretic properties.
It is truly strange times.
Intellectualy I know what is happening in my head, but intellect is not high on my list of attributes at the moment.
Space is. Now a wide blue space where some form of "I' is suspended waiting to see which way is forward,It feels important to be still just now, just wait until some internal trigger says"Let"s go!'
I lie there in the Star Trek room, trying to be open (knowing that it is happenning anyway) letting the tough guys get softened up and kicked to shit while the good guys cheer and hi-five, then get out their brooms and do some clean up.
Then the steroids march in and wash the area down, clearing out inflamation and swelling, patting all the compressed nerve endings in the vrain stem clser to where they are supposed to be, More rounded, fewer kinks.
And then I head back to the car, getting quite agile with my crutch - makes it so much easier to balance as all motor response in my left side is limited to my marvellous bones which work to move me through space and time despite the occasional grumble from flesh that thinks it could maybe just maybe..oh never mind, perhaps next time - and my lovely sister says Next? and I take her out to breakfast amd we do more in four hours than many do in twenty-four.
Home again, I check the time because the meds are easier if I get them spaced evenly if not precisely every six hours. I delight in the fact that I am still cooking - one handed, but like my typing that is improving althoug cutting anything is a challenge when the left hand slithers off any surface it is not glued to for the most part.
And I washed my hair. I promised to be sooo gentle - apparently the skin becomes quite fragile but I could not bear another day of sweat to collect, I would probably rake divots out of my scalp while I was asleep, rather defeating the purpose.
Actually, I think my hair has grown, some weird radiation effect before it all falls out. It is still securely rooted to the scalp but longer. Should fall out next week. My sis and I are starting the pictorial record tomorrow. My face is so totally round buit according to the scale I am only three pounds up after three weeks so veggies etc are working well.
Too many levels going on at once and I feel sleepy so a nap. Life has become very basic,do what I feel myself need. When i feel it.
And radiation tomorrow.
Well, not really, more like a breath before action as the week starts and I try to bide in patience,
I had a meltdown this morning. I screamed three times, a deep howl of sound from my feet that shook every bone on its way out and rang bright lights in the crevices of my head.
No tears. No words. Just sound and fury bouncing off the walls because I am getting so frustrated at people wanting me to make them feel better. Right now I need my resources for healing, for manifesting myself as functioning and capable, living and growing strong.
Yesterday I cooked lunch for four. Slow cooker pot roast with pre cut veg but I took joy in being up at six, browning the beef, layering the cooker, seasoning. And it was good. My sister washed the dishes because odds are high I would break SOMETHING!
So today a slew of phone calls pulled me from my primary concern, asking my attention for things that frankly would have held little fascination for me before this all started and hold even less now; all flavoured with the 'oh how horrible I feel this has happened to you,' I was so upset when I heard, I couldn't sleep...I know. They are doing the best that they can but do it in somebody else's ear!
So I sat for a bit and tried to get on with my editing - DVD reviews - then I howled. I suspect the same little pills that have blossomed grey blue flowers of bruising across my limbs may have contributed. The ravening hunger my doc suggested might happen with the steroids has occurred so I am eating tons of celery and veggies.
My system demands I eat, it does not seem to mind if I eat healthy, and although I can't do much about the water retention except drink lots of water and eat asparagus and other natural diuretics (I am not big on drugs per se) I seem to be staying the same size as my clothes have not tightened although my face has moments that would challenge the moon at the end of the day. It passes.. It wanes.
I left one message today with my neuro, but tomorrow I will call the oncologist directly protocol be damned and if my neuro is not comfortable being point man I'll establish someone else as the doc who tells me what to do next.
The docs have to implement the treatment, I will cooperate with everything in me and send sunlight, alpha waves and positive visualisations running up and down my cells and sinews in every moment but I do not have the power to prescribe one rad. And I suspect I am going to be needing more than one.
In the meantime there was the feeling after the screams. Like the day after a quick cleansing squall. Like the shock of a sudden wave on sun scorched skin. Like the sudden fragrance of a night blooming flower teasing along the breeze.
I wouldn't want to do it often but it took air and light into the places I had not seen were closed and stagnant, made my blood sing fizzing through veins that had fallen flat with waiting. It was not quite, but almost fun.
This is just so much bigger than I can contain. I feel like a bump on a log in the middle of a huge expanse of swirling...stuff. I have half formed opinions and plans bobbing up around me and slipping away.
I had hoped. Hoped so hard to get started on radiation. and it has happened. So casually too in a way. Dr, S saw me yesterday, acknowleged that the current view was brain first, then turn attention to the lungs, radiatiom, ten sessions, two weeks off then start chemo cycles and we could start today or I could come back.
So, about forty minutes later, I had idelible purple lines drawn besides my eyebrows and went down the steepest steps i have had tp maneuvre in a while - odd as most of those who use those steps are limping or halting to some degree - to enter into a room right out of Star Trek. Large, subtle lights and cool air. A massive donut thingy suspended above a base plate and another bed plate that swivels the target - in this case me - into position under the 'accelerator'.
The whole thing took about five noisy minutes after i was positioned and sandbagged into place. No fine tuning needed, we are frying the whole head as in addition to the brain stem buddy playing with my communications systems there were at least two other visitors and maybe more on a microscopic level. That's done. No rent or productivity, well, papers have been served and the marshall has a really big gun!
So it should be dramatic, with fireworks and at least a glow in the dark moment. It is actually. cool, I have been nuked! And I can't get my head wet for four weeks. What happens when I sweat?
I had actually planned to go through the hair loss thing with chemo so I could describe it and feel the strange sense I have at times of becoming both less and more of who I am. Less of what is seen on the outside, more of what really is underneath. Now, I don't know.
i think the clippers may simplify things and make me more comfortable. I'll give it a few days and see.
Then there is the other stuff. The meds.
My steroids have been doubled - makes sense as swelling in the brain appears to be one of several things i can expect. This leads to concern over the digestive and other systems so antacids are added to the line up.
And dilantin. Anti-seizure medication that for some reason sets klaxons off in my memory. Something read overheard that says NO! very loudly. On line searches at good sites are inconclusive. There is nothing that indicates taking anti -seizure stuff when you do not actually have seizures will make a difference. There are other meds that seem to require less of a life time commitment, serving a temporary purpose .
Not that I will refuse to follow treatment at all. Whatever I need to do. I am not however making others responsible for my health,that is my job.
I have decided that one nuking is not going to turn my brain to a balloon and on Monday I will speak to my neuro for another opinion. I will be a little further back from YAY! something's happening, a weekend on doubled steroids should be quite enough for my system to cope with all at once. I usually do not even take aspirin.
Plus, I have this whole new priority - nuclear medicine 10:00 a. Mon to Fri for the next two weeks.
And I will not be the least bit radioactive despite the little gremlins singing in my head 'you are the bomb!, you glow, you shine, you are the very best bomb I know!
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