For the last week the car has been making heat complaints - none of the major symptoms of a blown head gasket but you wonder and hope not because when my treatment schedule is set up - soon soon soon please - transportation through the time and space of a mere forty-five minutes - with a possible stretch to two hours if we leave ten minutes in the wrong direction - is going to be a surprising impact in my life.
So yesterday my sister, a June baby, headed off to DMV to get her licence renewed. I got a call. The water pump has failed and water is pouring out as fast as she puts it in.
My sister has been a rock to me for the past three months. She is staying downstairs with our mother, basically here to be care giver to me but also picking up the slack where I no longer skip downstairs with dinner for mom - who hates to cook.
She is younger than I am by four years, a lot taller at 5'11 and looks incredible at about 185lbs as she is built on heroic lines. Right now she wants to lose weight exacerbated by the steroids in her asthma medicine but she has this amazing face, beautifully carved profile and when she wears her hair in a single braid you can see our south american indian genes in an exotic almost iconic 'woman' image.
When she called yesterday, for the first time she sounded rattled and my world shook for a moment. I am only as strong as the foundations I rest upon. I got to see how deeply I have invested myself into me, how much I have discarded that is more or less irrelevant until I heal.
I also got to see that 'discarded' is not 'thrown away' - just in storage because fifteen minutes later I had called the mechanic, organised a ride to get the car towed and somehow managed not to scream at my mum who, when I explained the situation, said oh sure - help yourself to the keys. Not on balance with this, my mom, and maybe she cannot be, but I need her to be a little more aware because I cannot take care of her fears and concerns, not right now.
By the time my friend and I got to the mechanics it was to find my sister had managed to get a passing trucker to tow the car and had started the walk back to the place she knew I would be coming to, to fetch her.
They can pull the car down tomorrow perhaps, in the meantime another friend will loan a car (for some reason mum's is behaving as though it has a carburettor problem or fuel clog) so I can see the oncologist tomorrow - got the call a couple of hours ago - so I can possibly be arranged for microwaving as necessary as early as next week. early being a very relative term at the moment from my perspective!
My sister says I am hilarious, that she has laughed out loud more in the last three months than the last year, and even I can see describing that my mouth feels like a stainless steel drawer I should just be able to pull out is a bit..odd.
It is little enough to give her, a few laughs here and there. I love her dearly. I could not do this alone.
It has only been since March really but it feels like so many lives and lifetimes have passed since I noticed my left hand felt as though it was encased in a rubber glove.
Yesterday I was finally given a name to put to the visitors in my brain, my lungs. Not that knowing what to call them changes anything for me really but the doctors will be happy. I need them to be happy and talking to each other because ultimately, while I can say yes or no to this or that plan for my life, my body it is the doctors who make me the offers that will help me move forwards.
Certainly my visualisations, my nutritional support, my meditations will boost and accelerate the healing process and even work to do some of the 'undoing' that has to be done but the bulk of destruction, the slash and burn to clear my system of rather large accretions of anomalous cells is best left to those with experience in the field.
Six days on steroids has halted the dissolution of my motor skills. I felt taller when I got up this morning. I have not been conscious of hunching in upon myself but it had become necessary so I would stop walking my 'blind' left side into doorjambs or walls. Apparently some sense of positioning has regained its balance. Feels good to walk tall. I also have this huge well of energy or chaos surging which I am channeling into those things that need to be done.
Mr. H ( a healer rather than just a surgeon or a doctor - he apparently sits with some of his patients through the first post operative hours, all night sometimes) says the prognosis that radiation will work on the brainstem tumour is good. Combined with chemo to shrink the presences in my right and left lung and then follow up surgery to remove that lobe of the right lung once I have regained my balance from the chemo/radiation double. Not sure about final disposition of the left lung yet. I want my brain fixed anyway.
I had a fleeting thought to check and see if there is a sudden rash of adenocarcinomas in NY since 9/11 2001. So many of us breathed death for weeks that year.
I have had absolutely NO symptoms associated with lung tumours, no hoarseness, shortness of breath, coughing, wheezing, bleeding, nothing. Even now after three incursions into the mass withh needles and intent to plunder. all I have to show is a small yellowing bruise and a scar about the size of the eraser on the end of a pencil. And yet, on the cat scan there is this round ball almost the same size as my heart. Amazing!
Anyway, Mr. H will speak to the rest of my 'team' and we will be moving forward. Right now I feel like a bit of a passenger, and that gives me a chance to take stock and look at all the lives I have lived in the last three months and which ones I fought to hold onto and which ones I released, all relectantly but some quite easily because the organism is magically adaptable. I am designed to thrive, and when I support rather than struggle I let things work with the simple efficiency they were made for.
Not a bad idea for a Friday.
Today I have felt like a jigsaw puzzle where the pieces didn't quite fit together.
although most people who know me IRL are fighting the urge to behave as though they are with a seriously ill person - you know, gentle voicesm lots of are you okay, tired, can I get you anything- I actually have felt very well apart from the creeping numbness op my left side.
According to all my tests - and there have been so many - I am in perfect health. Just a few lumps where they should not be, but that is all to the good because it means that treatment will act directly and swiftly as it is meant to and my tolerance for the downsides will be high.
So today i think the full force of the steroids started to kick in and my body went WTF??? and the left side went completely numb and stopped listening to my brain at all, but my bones, the skeleton still works and was trying its darnedest to haul around very slow responding muscles.
And I was edgy and hyper, wanting to do, to go, to run when basically sitting in a lounger would have probably been a good idea. I compromised. Managed to clean the apartment in fifteen minute bursts and even got the sheets changed so the bedroom is crisp and clean and waiting for my oh so weary bones to amble in.
Which will be soon. I think tonight the shower will be simple. Sit under the water until I prune up, float the comfort of a flannel night shirt over cooled flesh and then bed and sleep.
After I go through my healing meditation so I can be mending bits and pieces through the night and wake refreshed with balance on its way.
The changes do make it unsettling at times. I never know what will be different in the morning, just that SOMETHING will be. And you start to adjust all over again.
I have never been one who gets bored or suffers from ennui so at least it does not totally freak me out to live in very interesting times
I am not sure how much of it is real but after only five doses of steroids I do belive there is a difference. This morning I picked up the toothpaste in my left hand without thinking and HELD ON TO IT!
I also felt as though I regained a modicum of control in the leg. At least I did not have to think FORWARD before moving off. I just moved.
These were the two functions that faltered most recently so I am going to assume that some of the swelling in my brain is receding. The vague achy feeling in my head is gone also.
So fast! It was what I hoped for, planned for, rehearsed for so I am feeling a little more relaxed. Faith that I would be able to retrieve myself was both strong and essential, but now I KNOW for sure and no matter how much work it takes, I can get the rest back too.
I really have taken the last two days off (except from writing and recording the film reviews), put a little more order into my home, sadly neglected in the rush to doctors and hospitals, played on facebook, read and lived my life for a space.
Tomorrow I will call for results and see if the steps to chemo and radiation can be put in motion, because this is just a breath to regroup and organize for the next phaze of my recovery, and finding the balance between destruction and healing.
Right now I am going to see if I can make level 8 in bubbletown and then go to sleep.
Rest and relaxing are both part of the process
Finally! Something to take! Something that tastes horrible, might disrupt sleep, cause weight gain, ravenous hunger, mood swings, water retention, blood sugar irregularities and a host of other dreadful things BUT it reduces swelling and inflammation in the brain!
The word steroids was not particularly one I looked forward to but having checked to find the medical community was not likely to offer me anything else while we wait for tissue typing to give a name to the type of cancer I am having an experience with, I'll take steroids!
Chemo on the whole will be more toxic and inimical to life and comfort and if I can stop the creeping progression of all the things I can no longer do and even achieve a reversal - and believe me it is going to prove possible - of the latest losses. I will deal with the rest.
I have carefully checked that the supplements I want to take to support my immune system are neither my doctors' lists of no -no's nor do they show as contraindicated in the on line databases I plowed through.
I am cherishing the hope that the fact that I take no medications - I have had more painkillers in the last week than in the last ten years - do not drink drug or generally abuse my system anymore apart from the occasional red Frutee (local soft drink), I hope all this means my system will be wonderfully and positively responsive to the rather large dose of steroids I have been started on.
Well I did not think it sounded much, 4mg twice a day, but Dr. C. assures me it is very potent so I shall eat and then take my tiny pill and reclaim those parts of me I can get back simply from reducing the swelling in my head. Oh I think i said that! At last! something which is moving forward instead of just passing time while I wait for news. And news should be by Tuesday at the latest.
So I will drink the Genesis drink my aunt bought for me, take my own supplements and my steroids, meditate and let it all go for a couple of days.
I have this week's DVD review to work on and record and forward to look so it is an especially good Saturday!
Dawn is full of muted colours this morning although the bouganvillia blaze happily pink and white against the green.
Ah, that's it. All the greens are taking on the tinge of dry, of waiting for the rain, and flashy emerald has given way to ochre touched with olive here and there to say that this is grass.
The sky is thickly white just shaded here and there with shadows as light gives three dimensions to the clouds and tickles them enough to make them blush a gentle spread of colour undecided on which shade of pink, of gold, to choose.
I'm living on the surface of my skin, feeling air like water as I move my arm, feeling water pearl out of my pores as air's warm breath lets me know that I am here, feeling all the secrets that live inside my skin, all the parts that click and turn, that pulse and flow and like the dawn expand to make life big enough to stretch in.
As I stretch I notice what has changed today. My tongue no longer knows that my teeth are clean as though I took a mouthful of oil to coat the insides of my cheeks and gums, reducing contact with myself.
I noticed yestrday my voice is deeper. Not by much. As though the vocal chords are longer, slow vibrations shaping air more distinctly adding just the slightest edge of rasp to the airy flow that is my trademark.
Six o'clock and morning is established, the sky has chosen gold and daylight sprawls across my floor. In an hour I will go downstairs. My sister will drive me to the hospital again where the plan is that shining steel will be the key to all the secrets they need answers for.
I just hope we can actually do it this morning as each test makes it harder for me to volunteer my flesh to harm's way even if it is all for the best. Shrinking nerves don't care about the 'long run'. Intelligence is useless in the face of instinct except by effort that turns a heartbeat into a marathon of action and reaction.
It tires me out to think. To persuade the parts of me that have slipped their leash to come back into line. I discovered this morning that if I emulate a snail I can almost move without the jerking hitch of muscles having second thoughts. Or just not thinking.
It has taken twenty minutes to type nine lines as I write between the daydreams that I can't remember pausing for but it is easier ti sit than marshall all the forces that I never used to think about. Just to stand up.
I hope I will remember the marvel that it all is, this thing called living, moving breathing, how beautifully crazy it is when it ceases to be automatic and intllect can barely start the car.
We'll get the biopsy today. They will have what they need. And this time next week I'll be writing about the good old days before chemo.
But the lady in the pink skirt was much worse off than I.
Nothing happened. Well, not quite nothing. I sat and chattered away with the lady from the X-ray department and ogled a couple of sexy interns who drifted by but my doctor had to scrub for emergency surgery so they sent me home. To go back tomorrow morning at nine.
The lady in the pink skirt was sent home too and given a prescription to calm her as her blood pressure was too high. She had been waiting since ten this morning and was very not happy about it. She didn't feel like chatting. She will be back tomorrow too and we will be like old friends by them
It is strange. I have collected this group of faces and we talk a little more each time. My sister and I both talk to anyone who seems responsive. It makes the waiting less noticeable.
I think my blood pressure is probably up a bit right now too. I am getting pretty good at preparing for things but the 'letdowns', no news, no result, no biopsy are more difficult to come to terms with.
I mean, I got my head around the thought of being stabbed through the chest with a large bore needle - and I am sure that even if they let the local take effect for more than ten seconds before the stab, it is going to hurt a lot more than last time.
Especially now that I know how last time felt!
I have been around long enough to learn that silver linings lurk everywhere.
I just wish sometimes you could see them immediately. For instance, on the way through the car park my sister's skirt blew against a bright yellow post which turned out to be freshly painted with no wet paint sign.
The scent of turpentine is wafting up from downstairs and intensifying my headache so heaven knows what it will do to her asthma.
Actually, yesterday and today are the first time I have really felt that I am not as usual. Apart from the vacationing left side of course. It may just be stress fom last week, but my head feels cloudy on the inside and I have found it difficult to focus the last few days.
Part of the problem is my left hand smacks me about when I am asleep so I keep waking up. I am tired too.
I just read back the opening paragraphs, I still edit out the most egregious typos although I am much more accepting of my fallibility than I was three months ago. , but I seem to have developed this staccato, short sentence style .
No doubt in part because I am typing with one hand, but simple suits me right now. Simple thoughts and statements; simple clothes I can pull on and off without bending back the fingers on my left hand because while the flesh is turned unfeeling the bone of me lives on and can be hurt.
I had not realised that once my muscles relaxed because my brain no longer issues stand up straights and pull youself togethers that my joints would lose a protection I had not known they needed.
They are no longer cherished and supported by my flesh as a matter of course, I broke my toe because I did not notice it was folded out of place. Well toes in the middle of the foot don't fold under the foot. Not usually. I am a little weary of learning all these new skills that I need against tomorrow. But I'll learn them. Write about them when I can.
A how to book, so I know where I have come from, what I used to do - a sort of system restore button so the elements that used to be more familiar than my face and now don't quite fit the picture, are just laid aside, not lost.
I really hope this thing flies tomorrow or I am likely to burn out my adrenal glands and feel as though I am captured in a moment that does not move, just goes 'bong'when you click on it with no task manager in sight. Computer analogies! I must be really tired.
Probably need to reboot!
There are things that can be done. Steps to take, but this has swelled from my little world to a universe of where to go, how to pay, who to turn to. And right now I really do not know how to get to the point.
It is all a question, in the end, of how closely can you look your own mortality in the face. They keep taking away my wiggle room and I am getting an extreme close up view. I cannot see the forest because the tree is in my face.
Everyone else is buzzing around, getting upset. I cried for about five minutes yesterday. From anger more than anything because I have been SO GOOD! I did the tests, everything I was supposed to do. So why were my reports missing? Why were my X-rays not available? Why am I still waiting?
This time waiting under a shadow that I am going to have to work really really hard to get out from under. Like what has been going on since March is not enough. not big enough, not stressful enough, not downright annoying enough because it is really hard to talk to other people about your cancer. Their fear shines in the sweat that slicks the skin, the lowered voices, the fact that they no longer speak to you at all directly, don't meet your eyes.
Won't look in case the maverick cells leap from your eyes, codemning them; it's not freakin' catching, neither is it some insidious super power designed to sap your strength. Strangers reach out in empathy, in love while friends avoid me. I understand but it still pisses me off. There is no special language needed. I am still me. well, in their eyes I guess I am "me+...."
I just checked and the blog turned pink which means there are too many words. well this time there will be 2 blogs because I need to say the words and as many of them as want to be spoken.
Today, for the first time, I feel discomfort in the lung when I breathe deeply. My head aches, my back hurts. Stress and uncertainty are pushing the envelope of what I can handle. I need to do something, I think. Then I think, what?
I want to eat something, but what, when taste is such a distant echo im my mouth. I want to watch a movie, read a book, anything to fill the screaming silence in my head. My usual comfort activities, dancing wildly to very loud music, or running are beyond me at the moment.
Actually I just this second thought of something I can do! Beat the stuffing out of a pillow with a cricket bat. it won't change a thing but I will burn some adrenaline off and then maybe I'll be able to step back a little. Start to see a point.
Most days I do well with the balance thing. The acceptance thing. The open up my heart and breath thing.
Other days i don't. I sit on my cushion and watch myself shake and tear at the pillars of my existence, Watch my inner elemental pound her fists and bang her head bloody on reality. Listen to her scream' this is SO NOT what I had planned for 2008!'
I hate that the inside of my mouth feels as though it is wearing one of those fuzzy white socks that comes in packs of six. Who the hell has six feet? Why would anyone want three identical pairs of socks? What fun is that?
Each week i download the new music for the station from our supplier. I listen to make sure it really fits our format. No sudden expletives or suicidal thoughts expressed in the third verse, second chorus. Most of it is just okay, but every now and then a rhythm pulls me to my feet. I dance, rejoice in lyrics that say more than shooby doo.
Today I almost fell AND IT REALLY PISSED ME OFF. I do not, and let me state it clearly so all the powers that be and every neuron hears, I do not accept a future where I do not dance. Where I sometimes shove the toothbrush in my eye if I forget and use the 'wrong' hand. Neither of my hands is a 'wrong' hand. One is just a tad misguided at the moment and we will fix that along with other things that just don't listen well anymore.
I will do what must be done, attempt patience, but I will not turn away from who I have been and let her disappear. I will not allow 'relax, I'll get it for you' while I can walk across a room. I will dance, not sit and tap timid toes on the sidelines.
I am a poet. I am a dancer. And right now I am angry.
After my appointment yesterday I stopped in at the hospital canteen and treated myself to a roti for lunch. Curried chicken and potato bundled in a skin, rather like a wrap but more flexible. Picture a burrito aromatic with curry rather than beans
A woman walked over, said 'let me taste the roti' , picked it up, pulled off a corner and ate it. I just stared. Then she asked me to give her a dollar so she could buy one for herself because she only had five dollars. I just said no. She went away and came back about ten minutes later to tell me she had got the money so she had the roti.
I was still too discombobulated to pull the corner off her roti to replace the one of mine that she had eaten
Very surreal. About fifteen minutes earlier I had been explaining to the interns visiting during my appointment precisely why, when my doctor said,unfortunately the cells were malignant,I said fervently:"thank the gods!"
Simply because it means I am now referred to an oncologist and can actually start treatment rather than have to have my bowels, pancreas and uterus explored in search of the primary tumour. Leaving my brain on hold. My left side increasingly erratic, on the verge of dangerous in some cases - the shower, stairs, washing dishes - rather than entertaining and frustrating.
The radiotherapy department first gave me an appointment on June 2nd, which was advanced to May 19th and now I am slated to see him on May 13th. I was exploring family counselling through the cancer society for my mother and sister(I am not terribly available to be comforting right now) and someone who knows me and the oncologist made a phone call. I am very grateful as I do feel time matters right now.
It does make a difference when they look at you and say the cells are malignant. Even though you knew. It makes the air around you very still and quiet. Makes the moment rich and full. And deep inside a little voice goes "Shit! I really am going to do this!"
Then the dam breaks, and the future tries to form while the past is lost in its total irrelevance.I have never observed myself in shock before. This is really big shit! Much bigger than I had been thinking. And the little voice gets bigger and says" Wow. Very surreal."
If I had decided to write a fictional book about an older woman who developed tumours in her brain with a side order in her lung, I would have gotten it all wrong.
That saying ' walk a mile in my shoes' just does not cut it. You have to put the bloody shoes on.
I have not written much of late ( I was at a site where they give rice to hungry people if you spell their words correctly, and busy weeding other peoples' gardens on facebook).
Last week was ver stressful as I went from being untreatable in Barbados on Tuesday to being told on Thursday that ALL my doctors thought I should have lung surgery . I saw the surgeon on Friday and asked if agreed to the surgery if they would be able to treat the brain while I was recovering.
I also reminded him that when I had lung surgery for a benign condition 35 years ago I had four strong young functioning limbs and pointed out I currently, through no fault of their own, have two reliable limbs, both on the same side of my body.
I think the mental image of a silver haired woman hopping around balanced on one leg with no arm for support got to him.
He did a full contrast CAT scan - don't know what is in the dye but it leaves you feeling really good -and came out rather subdued. Lung surgery is not an option. I have another tumour, smaller, in my left lung.
So today (in about three hours) I will be having another biopsy. Thid time pushing to grab a chunk of real estate rather than a few cells.
No doubt this means a needle of considerable bore that I do not even want to THINK about (I am sooo phobic about needles) far less see.
I have worked with my phobia to the point that I can give blood - although they may not want it any more-
five minutes after I get to the unit instead of having blood pressure so high they send me away. Just as well as I hear most chemo patients become veritable pin cushions!
I was up late editing a new radio piece, got a sponsor for the DVD reviews and the first show is tomorrow, all done, my sister will drop off the CD back up for me while I am in surgery.
I am scared again. really hope they get what they want this time because I am starting to get headaches, not severe - more of a dull presence - so I am watching for nausea and disorientation because that will mean the shit in my head has hit the proverbial fan. actually wish they would do
a scan of the head or another MRI so I can see what is happening in there that has so much impact out here,
Time to go. I'll be back.
My heartfelt thanks to all my friends keeoing me company on this very odd detour in my life. Dorielle
Men frequently complain that women do not get to the point. They talk all around the subject (and keep talking about the same thing for far too long!).
Since Thursday I have not really had a great deal to say. Apart from telling the tale of the 'hi-jacked roti' to almost universal disbelief, reassuring because I was there and I had trouble believing it happened, I have been waiting again. This time was THE time. Seeing the oncologist was the big first step needed to have happen. Get a treatment plan in place. DO something for a change.
Sometimes it is amazingly difficult to get to the point. The subject is so large it sits on the plain of your consciousness like a city. It is confusing to figure out which road to take far less which gate.
And while I could write down the facts, each footstep leading forwards, with relative ease, it would not tell the story of how the world, cramped and uncomfortable with the certainty of cancer, chemo, and radiotherapy could become a universe, a beach where I am just one grain of sand, trying to fit the latest information into a context that does not leave me reeling, feeling like that astronaut drifting away from the space station, falling up into the stars, cold suns that will never warm my skin.
The push and clamour of emotion tends to crowd science to the edges of the mind, and it is as if there are two of me. Well three, because there is always the observer, watching without judgment (most of the time)watching and keeping me aware. But right now all of me is stunned. I cannot see the point. far less get to it.
I went to the oncologist's office yesterday. My sister went with me, as I wanted to be sure my memory alone was not the source of information.
The morning started with frustration because my X-rays and CAT scan had been signed out and Mr. H (the surgeon who performed my biopsy and had the films) was not reachable. We had given ourselves four hours before the appointment so we had him paged, left messages about what was needed and why, and although we still did not have them by the time Dr. S was ready to see me I did have my original chest X-ray and my MRI films with me, so it was not total disaster. Mr. H had picked up his page and left a message that the films were with X-ray. They were not.
The lab could not find the biopsy report. Nor the cytology results from the bronchoscopy. Still not disaster, just really annoying but my notes were there so opinions on the parameters of my treatment were ther to be considered.
So was the opinion that the mass in my lung is a histiocytoma.
Now while I understand intellectually why the lung is important this is drving me crazy.
I have known from the beginning that the tumour in my brainstem, causing all the disruption in my life, is inoperable. Surgery itself would do too much damage. So I do not particularly care if is a primary (possibly benign) or secondary(definitely cancer) tumour. It is malignant by virtue of its position. and I have embraced that knowledge since the first week of March.
I have been waiting and cooperating while the doctors to do their tests so they can tell me what we can do to contain and destroy the tumours in my brain. As most chemo therapies will not cross the blood brain barrier, the only possible treatment is radiation.
I finally truly understand why the lung tumour is important. Secondary tumours have the same characteristics as their primary source.
The lung tumour I appear to have is highly resistant to radiotherapy. There are treatments available, such as the gamma knife and stereotactic radio surgery where the tumours are targeted with pinpoint accuracy and superzapped with about 210 beams of gamma radiation. No scalpels, so therefore perfect for the type of tumours I have.
We do not have a gamma knife in Barbados.
Continued.
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