Posted: Mon Mar 16, 2009 7:44 AM CST
moving forward, again.
Six weeks ago my world was turned upside down, again. Over the course of about four days I discovered my cancer had spread to my bones, my boss fired me and both I and my sister fell. I cracked all the ribs on my left side which was a darn sight better than shattering my right thigh which is now an ongoing risk, and my sis, coming to help me, broke her ankle.
We have been two physically challenged women in one house dependent on others for transportation instead of the freedom to pop into the car and let the road take us and although I have been functioning it has been minimal.
I did go through another fifteen radio therapy treatments and got myself off the morphine they put me on to quiet the screaming in my bones but my world was tumbling completely out of control so I gave in and planned my funeral. I also planned my birthday party for December 21st 2009 and now I am organizing all the stuff I have written over the last year into a book proposal, designing a query letter and seeking an agent to shop my book around.
I walk a little more unsteadily and I am loading up on alternative treatments that do not strike me as being more likely to kill me than my current dis-ease. Asparagus, honey and cinnamon and shitake mushrooms won't do me much harm and if they don't help, well neither did chemo!
I have always believed that the human organism is infinitely adaptable but I also believed that I had enough to deal with. Seems I was right -and wrong - again!
Posted: Sun Mar 1, 2009 7:28 AM CST
catching up
It has been a while since I have written here because I kept waiting for the news to get better.
It got worse instead. The doctors do not expect me to get better and even my immense faith and desire and intention to heal is rocked by the fact that my cancer has spread to my bones. I certainly do things thoroughly, lungs, brain and bones. For almost the first time in my life I wish I was a little less efficient getting things done!
I do believe in miracles but see no particular reason I should be in line for one, I am a grasshopper girl. Froth and whirl and pretty words with a hug and a kiss on the cheek as I dance off to the next moment leaving nothing behind but a smile.
I don't feel like writing now but so many of you have walked beside me lending strength and love this last year that I wanted to touch base. I will be back (of course) and wish us all peace.
Posted: Mon Dec 29, 2008 8:52 AM CST
everything changes....
miss a few weeks blogging and when you come back the whole site looks different!~
I kind of wiped myself out doing too much and then I moved - not far, just from top floor to ground level, swapping my fifteen stairs for two,but it entailed a shift of dsl service and phone service which left me bereft and unconnected for the first time in a while.
So Christmas Day, Boxing day and, indeed, my birthday have all come and gone in a flurry of food and wrapping paper and I stopped turning vegetarian for a few days seduced by the scents of clove studded hams and the sly succulence of perfectly roasted pork, the spicy tang of jug and doved peas all the yummies that heave their way onto the tables at this time of year....
Since I stopped chemo my hair has started to grow in again and the steroid chipmunk cheeks are going back to normal although I feel far from normal - no doubt a combination of getting over chemo, radiation effects and a total change of diet.
Much of my life is still in boxes because one handed unpacking has its challenges - in five days I have only emptied eighteen of twenty five boxes - I did manage to assemble three of my bookcases but the futon frame is going to be more than I can handle.
I wake in the mornings, live and breathe and have my being. I am a lucky woman in so many ways - I have found a physio therapist who does acupuncture and a service where you can hire drivers who drive you around in your own car and I discovered that although I really missed my sister - I sent her home for the holidays - I have not become totally dependent.
Yes I can lead a functional life with half of me ignoring any and all instructions being issued from my bombarded brain, it ain't always easy but no one ever promised life was easy did they?
Posted: Sun Nov 30, 2008 9:37 AM CST
when did it stop being fun?
It all sort of crept up on padded paws oozing silently into the room, waiting patiently for me to look up and see the writing being flung at the wall.
It's a nasty shock when you realize your doctor does not expect you to win, when they start talking about palliative treatments and pain management because no matter how grounded or pragmatic, we have been brought up to hear doctors as an authority and when they do their Voice of Doom act there is a moment of instinctive belief which splinters the bulwark of your own resolution and you waver.
Then, if you are lucky, you spend some time picking up the pieces and weaving them back together with research and determination. I now own a juicer. I read several somewheres that cancer dislikes an alkaline environment so I am transitioning to alkaline foods, I am going to give those cells the most hostile environment I can create for them. It's not like they are paying rent or anything.
With the traces of my last chemo cycle starting to leave my system I am cleaning my internal house and putting shiny new bricks in place to support my immune system. I don't want to live forever but I refuse to hand over this mind and body that has been lent to me, that I have lived in, loved in, laughed and cried in, these feet that have danced me in and out of trouble, to some rogue cells for their suicidal party that will take me with them. Not happening.
So I am cultivating a taste for cabbage and broccoli juices (pretty awful) and balancing with apple and carrot juices ( palatable) and turning out enough pulp to start a compost heap and I will keep peeing on those little strips until I consistently turn them blue!
The hardest thing for me is accepting that it is okay to have moments of weakness, that it doesn't matter if you falter or waver as long as you come out swinging and keep on moving forward. Besides, I want to be able to give the finger to that wimpy little doctor who has given up on me. And maybe a raspberry too.
Posted: Fri Nov 7, 2008 6:21 AM CST
forgetting how to multi task
I have always been able to do more than one thing at the same time, now suddenly that too has changed and I find I have one focus at a time, and some of those for a very short time at that. Yesterday I was put on hold on a phone call and I just sat there listening to the music on hold and singing along instead of turning back to the computer and the commentary I was working on.
I nearly hung up when a song I did not particularly like came on because my focus had shifted from phone call to music. This is going to be interesting if it is more than a passing phase, I am going to end up living in an eternal moment and will be endlessly happy but a total ditz to anyone who meets me or has to deal with me.
I have been thinking about pain a lot the last couple of days. Feeling it too, from the bright clean pain of the tendinitis from where I fell, to the sharp ice picks through my head that always manage to wrench an involuntary gasp or moan from me, to the dark heavy pains crawling through my gut, occasionally pausing as if to make sure I am paying attention. I am. Actually I am frequently curled up like a craven in my bed sobbing "I'll talk, I'll talk just tell me what to say!" Nerve endings play intense music and I have not yet found a way to embrace it.
I did fulfill a dream this morning. I have always admired the commentaries they used to have on the BBC by Richard Dimbleby and his ilk and today MY first commentary was aired on BBS at 7:30 a.m. so it will catch the weather audience. It will be a weekly event, just my thoughts or views on whatever struck me as portentous or socially significant. Nothing overtly political and always short, sweet with a touch of what I consider wry humour.
Oh this is great! I am using Firefox instead of IE today and it is spell correcting!~ Gotta love technology!
Posted: Tue Nov 4, 2008 7:29 AM CST
defining normal
it's been a week since i wrote. Couple of reasons - I retreated to bed for three daysto cherish the exquisite pain that suddenly tunneled through my entire digestive tract. It is hard to credit there is no sign of external or internal bleeding. That much pain should bring blood, how could it be unproductive? Just pain for pain's sake? A new art form? I took no joy, no pleasure in its bite.
other reason, no news. A half assed report saying the brain scan was "normal" - I asked for details as i had seen the scan and asked which type of normal we were going for. Clearly NOT for a return to pristine, uninvaded brain tissue so is this the normal of an irradiated brain and if so what does that mean to me? Is it 'normal' success or 'normal' falure? Should I sign up for classes or hock my dancing shoes?
I find myself craving attention - I long for strong hands rubbing my limbs with fragrant oil and feeding me pomegranite seeds. Or grapes. Reading to my restless mind with resonance and a smile, holding me underwater then fanning my dripping flesh so I can be truly cool, bringing me glasses sparkling with ice, filled with rich foaming juices to assuage all my thirst, all my need.
Instead I drink cups of tea hot enough to pull waterfalls from my pores, so full of chemicals my own sweat makes me itch and smell like mushrooms with a spike of formic acid in the blend. My new normal, unfinished undefined, so incomplete I'm having trouble finding me at all.
Posted: Wed Oct 29, 2008 5:59 AM CST
Tuesday came, Tueasday went
I saw my brain, unfortunately it did not come with a radiographer's report (nor an owner's manual) so I am hoping Dr.I or Dr.S will be available to do some translation. To the untutored eye it looks scary as all get out and added top the inadvertently acquired information - inadvertent because it was on a website I was researching for headache info - that whole brain radiotherapy has a median survival rate of three to six months well it has been an intense couple of days. it never occurred to ask if I would survive the treatment!
I will, of course, because that's what I do, go through things and survive them, turn them into words sometimes that other people think are pretty, heck somtimes I think they are pretty! It is always so much harder in the world of 'do not know' but now I have six months of learning behind me. My hair is coming back on schedule - three months post radiation my sis took a pic of the fuzz halo - long enough to blow in the wind i'll have you know 1/4 inch at least - we'll try for a better shot later and I will upload it.
And I shall corner a doctor this morning or stop by my neuro guy after chemo with a print out from that site and find out more but not wandering around on my own with fear and sketchy knowledge as companions that will just drive me back under the blankets where I know the monsters can't get me, but nothing good happens there either!
My sis says she is fit to drive me and after much soul searching I am going to trust she is wise enough not to do herself harm - we have tied the trunk down securely so the car is usable so I need to go it's almost time to leave for chemo. Just two more days! Then I get to do something new.
Posted: Sun Oct 26, 2008 7:57 AM CST
having some quiet time
this last week literally gave me sharp stabbing pains in my head so I hunkered down to medtate and keep my stress levels down.
My sister's whiplash is improving but my car is still out of commission and I am trying to let go all thoughts of the radiographer's report on my cat scan. They would not let me look and the glimpse i managed to catch meant nothing to my neurologically uneducated eyes. So i have to wait until Tuesday. The first day of my last chemo cycle. It is true what they say, this too shall pass.
Yesterday i finished mock ups of four print ads for the radio station and i think two of them are actually good while the other two are okay, just a bit pedestrian but really good artwork could make them - unfortunately my own sketching/painting is intermittent, occasionally inspired generally just run of the mill.
It has been four months since they nuked my brain and i am dizzy and feeling oddly weak again, the scary thing about radiation is it works slowly and makes edits in your system without warning, sits for a while and then starts up again, a bit like a flower blooming.
I am doing my best, went to a fishfry last night and going to the beach in about an hour. I went last week, walked into the water and fell flat on my face. The sea, the only place to fall, even kinder than love!
Posted: Mon Oct 20, 2008 12:10 PM CST
sis is ok
apart from severe whiplash, but I am very grateful that her spine was not battered too much as she had a previous injury which could have been exacerbated.
I am now totally dependent on the kindness of my friends as both my driver and car are out of commission - this week is not too difficult, blood test and cat scan tomorrow and i have the rest of the week to organise for my last chemo cycle next week.
Tomorrow is a bit frightening because they will scan the brain and we will find out how much the radiation achieved. My vote is for total destruction of tumours with minimal tissue damage and, as the lady says on Are You Being Served, 'I am unanimous in that!' And if not? Well, we will all get to find out how well I practise my philosophies of life. Or Life for that matter.
I am finding it harder to have fun in this playground because the management keeps adding features I would prefer not to have - this week my video deck died followed by my DVD player and yesterday the DVD drive on my cmputer decided it is not going to eject the disc.
I have tried everything short of removing the casing of the CPU and disassembling the drive. I did actually try but it is not a job for one hand only, the light comes on but the transport is jammed. I need a repairman who makes house calls - too bad all my IT friends are in NY!
So my fun quotient is fairly low tday, in fact I bawled my head off for a while when my sis said she managed to open the trunk on the car but now it would not close. You can still drive a car with the trunk stuck closed!
It is just life but today it is a struggle to get things to flow, but at least my sister was not terribly injured, just soft tissue stress and pain that is controllable with meds.
I think a vacation would be nice!
Posted: Sat Oct 18, 2008 11:53 AM CST
my sister
i was just getting ready to go to the beach (finally!) with my neighbours when my sister called.
She hadf been driving my mother to pick up HER car when someone rearended them. Police had been called and an ambulance as my sis has a bad back and her neck was hurting. I wasn;'t in a position to do much, but I called my friend H and he was ten minutes away so he said he would pass by the scene and since then my sis and mother are in A&E waiting for X rays.
I called M to cancel going to the beach and then decided to go anyway, I might as well get a work out while I worried and this way i did not have to be alone.
Back home now, waiting for call backs and about to make a cup of tea and trying to come up with a plan to take care of my sis if that is necessary and to take the burden of caring for me off her shoulders.
I hope she has not been seriously hurt. Please let her not be seriously hurt.