I spent yesterday finally getting my over fifty discount card - my sister went with me. My goodness, we are both old enough to be grown up now!
Many of the things I will need to do in the coming months will be less expensive if I wave a BARP card at them (no, not a misspelled eructation!) and the savings go as high as twenty % depending on the company.
THe game plan is back to a thursday morning appointment at the hospital which will include a bronchoscopy and they may fish for cells in my lung tumour.
On the subject of fish, there is a picture on my profile of a fish, no barbels so probably NOT a walking catfish, that likes to spend time out of the water. Side fins, no dorsal fin, fish tail, about six inches long overall, If you know what it is, please tell - my new distraction
This will mark my entry into the healthcare system as a non private patient which will be a blessing. Worrying from test to test and one consultation to the next about how you're going to pay is not conducive to a healthy balanced attitude to deal with disease.If admitted to hospital I may end up going for CAT scans at 3:00 a.m but I am awake then anyway.
Knowing two doctors who admit that chemo & radiation are in my future is a great help. I can explore how to marry my preferred treatment methods, acupuncture, holistic medicine, and how they can support me with what western disciplines do so well. Slash and burn not to put to fine a point on it and not meant to disparage or decry either.
I have spent the last few weeks in pieces. A lung, a brain, a brain stem, a tumour or four, a shadow on a screen that shows a picture of a part of me, and have found it to be very debilitating as I keep having to turn myself back into myself so I can move forwards.
I cannot heal in pieces. I must be all together, all on the same page with clear and truthful knowledge of what is, what might be, how else can I decide which things to follow, which things to ignore? I choose life and years of sunrise in my future. It does not mean i will get it. All that matters is that I choose it.
Not every wish is granted, sometimes the answer to a prayer is no. Acceptance does not demand you turn your face to the wall. Surrender means you join the winning side!
A word that gives me strength is never empty, a smile is never wasted, even in the dark.
I used to think I was patient. Yesterday knocked that myth out of me!
Actually, I am not being fair to myself. After weeks of unanswered questions, being put on hold, sent to get another test done, after meeting with the neurosurgeon his certainty, matter of fact approach let me relax and release my death grip on circumstance.
Someone else was going to make things happen. Oh I did my best to help things along. I called to check that ALL I was supposed to be doing was wait by the 'phone.
In other words, I'm here, I am waiting, please do not forget me....
So when nothing happened...I did not get to see the next doctor , probably operating on some other anxious creature sinking gratefully into chemical oblivion for a few hours. And my little bag, carefully packed with my take on pyjamas sits forlornly at the door; reminder of the greatest aberration of my life. I want to go into hospital.
I want to let go, be told what to do and how and when to do it. Right now I find I sit for ummeasurable moments with nothing in my head to move me forward. In bed this morning, the left side of my body gave great galvanic leaps as if to run away and leave the rest of me all home alone.
When the phone rang, my left arm wavered from my side toward it, contact made, then it fell, a clatter from fingers that did not know their grip was not established.
Three days ago, if I watched, my muscles still could speak to my brain through my eyes ( a sweet conceit no doubt, but all I have is words to draw the picture of my fading) and i could grasp and hold securely. That link too has shut down. It is fast. so fast the doors are closing and others hold the keys I need.
One of the odd contradictions (just one!) is the sensations. I say numb but there is feeling of a kind. My side feels tight and stiff, tied up in bandages, a body cast and all the while my muscles feel like water, like the end of a marathon, dissolved and failing. And neither feeling is fact. The truth is nothing more than garbled messages and typos, a failure to communicate that slows me down to almost stop on just one side.
People keep reassuring me that this is not necessarily fatal. And I am surprised because death is their thought not mine. My fear is being trapped inside my flesh with words that can't escape. I have never truly been immortal in my own mind, have always understood the end implicit in my beginning.
I worry about how to balance this new style of existence with my life. How will I do my job? I already put new programming on hold because I cannot physically run the studio solo any more. Midnight till morning on Fridays has reverted from live with me to automated once more.
Today, I feel like letting go. Not giving up, just hanging in the middle of the sea, looking down at the sand, knowing the sun is up there, and I won't fall because the empty space I see is full of things to hold me where I am supposed to be.
I hit submit at the very moment I decided the poem said too much and not enough and anyway, people prefer pretty frothy word sundaes in the forums so it will sink like a stone and break my heart which is woven into every word.
I am so afraid to step forward, and yet forward is the only way to go.
I am not even sure why I am afraid. Well, on second thoughts, it probably has a lot to do with giving up control. Unfortunately - from a purely 'I like to do it my way' perspective- my neurosurgeon (Ha! MY neurosurgeon, not words I had expected to come tripping off my fingers in this or any other lifetime)is honest, blunt, straightforward, recognised the fact that I am neither a fool nor a fragile flower (crap! I thought I did that impression well!) and dealt with me accordingly.
And that was a relief. The not so much a relief part is BECAUSE I am not a fool (just not a doctor) the minute he explained it would be possible to tell by looking at the 'cannonball' (technical term the doctors taught me) in my right lung if it has metastasised i could see where the lung/brain connection was, and how it would be eminently useful in ensuring that I continue to spread word confections through the ether.
There was a very pure logic to his presentation. Especially as the only other tissue available for biopsy is locked wthin the bony fastnesses of my skull. While they can stick a tube through my nose and get at ole cannonball. A no-brainer (pun probably subconsciously constructed, I have a sick mind!)
And there's more. After the biopsy - and I am for once, attached to my cell phone, which is turned on, as he wants to get things moving today - there will not be lung surgery, or brain surgery for that matter as the main tumour in my head is in the brainstem and not well-positioned for extraction, but chemotherapy and radiation so I guess it doesn't matter any more that my hand shakes too much to wield my trusty clippers. I wonder if my eyebrows/lashes will go as well, another thing to look up.
Actually, maybe there is a lot of 'overwhelm' in these feelings - one part of my fractured mind just started work on my 'what I need to take with me list' while another started planning breakfast.
And in the middle of it all there's this little chubby tot with masses of curls tugging at my sleeve saying, I don't like this game anymore, can we go home now?
And my lower lip trembles just like hers and my eyes burn as I say sorry love, we can't stop playing, we have to get past the hard part.
Except, I don't get to do anything except show up. Not a particularly difficult thing to do on the face of it. Just that I don't particularly want to do it right now.
I will do it anyway. Even though I just want to go home.
and it has nothing to do with my health.
Sometimes people say incredibly negative and provocative things which can be guaranteed to stir up discord and perhaps hurt feelings. To fall back on the 'it's my opinion' ploy is specious.
I was happily chatting away in the forum this afternoon. A thread I found interesting that kept returning to topic after little excursions into social interaction and then a bucket of cold water, supercritical, judgmental, rude (this is my opinion, I was not actually the only one of that opinion, but it was mine)post was added.
I asked if he meant to be rude or was he having a bad day. Not my most tactful moment, but I have limited patience for nonsense at the moment and I have had a bad six weeks.
Others queried the tone of his post and presented their opinions. I thought everyone was very polite. 'Cept maybe me.
What has ticked me off is while the member thought it fine to make scathing comments about the thread and our posts to it any negative response to his stance meant we were attacking him for not agreeing with us.
Although there was nothing to agree or disagree with.We were exploring behaviour in the threads and whether old timers needed to change things so as not to scare newbies.
Then the second wave came aboard and castigated all of us who had been posting for attacking this rather impolite person.
Then it started to get personal. I came out here because maybe it will calm down. It felt as though battle lines were being drawn and i can just see it all turning into one of those slanging matches that sends regulars to seek shelter.
Just because you feel something does not mean it has to be said. The same information can be imparted without being rude, unkind or hurtful.
I am grumpy because I was relaxing and having fun playing in that thread with a topic under discussion interpersed with banter and fun. And it was good for me.
This is definitely a bah! Humbug! moment.
oh boy , I lost my temper. Tough.
I am more and more aware that at the moment I need to keep my focus on myself and direct my energies to surviving and healing.
I am just one, of many. I will never know how many in the forums, reading my blogs in passing or just members of the site are recovering from, in the midst of, struggling with or, like me just beginning their journeys with some terrifying, painful, annoying illness or 'condition' right this minute.
I am being as public as I can bear to be with what is going on in my life because the worst part of it for me is giving up control, in bits and pieces, and not knowing any answers no matter how much I do what the doctors ask of me.
I write all the little sulky details down because at least that way someone else who reads here will know I behaved like a big baby at times so if it is what THEY want to do, they are not alone.
Yesterday I told my neuro (politely) that he might want to make sure his patients are aware that the lumbar puncture MIGHT be painful, might give really weird feelings, might feel like a panic attack turned inside out.
I pointed out that NO ONE so much as suggested to me thare was anything more to it than the possibility of a bad headache after. This, combined with the fact that I KNEW I was having a local anesthetic lulled me into a state where I expected nothing and so was taken totally unawares and was completely vulnerable to basic fight flight or feel like having hysterics responses.
Of course being aware I had 'long and sharp' embedded in my back, I lay very still and hoped my indepedent left leg would stay where it had been put.
That moment, looking outward, trying to make him aware so the next poor soul at the mercy of 'long and sharp' knows what might happen, reminded me of all of you who, like me, are trying to find ways to think about the unthinkable.
Trying to get straight answers from people who want to heal as, help us, but get caught up in the puzzles we represent and forget that we are right there in front of them with fears and feelings.
Trying to set boundaries so our well meaning family and friends don't drown us with attention we really do not want, and yet do't stay so far away that we feel lost and terribly alone under the flood of tests, of words we do not know.
One friend said to me I don't know what to say to you. And that is not true. He does not know what to say to the disease he suddenly sees standing where I used to be. Or perhaps he doesn't want to say 'how are you?' and have me tell in gruesome detail each twitch, each awful feeling, is afraid I will cry over something he cannot fix.
I told him just say hello and offer me a hug if I want one. I find I crave connection. And if I cry, ignore it, give me a tissue or a papertowel to blow my nose on. I will stop.
Those deep resounding sobs are just the song of fear and loss that have to be released if we are to stay sane as our lives change to paths we did not choose and never expected to travel. Worry about us when we smile and take tiny steps and keep our arms pinned close against the body. I cannot speak for others (although I am trying to) but that is when I am fighting not to break, when inside I feel that I will shatter if I breathe deeply, when i feel like filaments of glass so stretched I need to wrap my arms around me if I am to survive.
to be continued.
The only remnant of my discomfort - suffering seems such a big gaudy word for a relatively minor procedure but man, I suffered - is two small pale pink scars over my spine.
On Saturday I really did not feel particularly well but perhaps going to work on Friday was ill advised.
Today was better apart from one or two lightheaded moments, although my hand and leg are still becoming more erratic and less under my control. Without a visual, I can no longer tell if I am holding something or not. I really have to stop leading with my left. And stairs are definitely a challenge.
My i ching today was waiting/nourishment, Hexagram 5. It starts in my translation: there is a situation at hand that cannot be corrected by force or external effort. This is a time for patience and careful attention to inner truth.
I enjoyed my Sunday, Got lots of laundry done and dried it in the brisk breeze and warm sunshine. I watched a DVD at five this morning (quietly - need to get headphones) because I could and I was awake.
I should get results on the latest round of tests tomorrow at 9:30. I am hoping for as definitive a diagnosis as one can get without a biopsy. Apart from one or two minor ripples, which have more to do with my ability to let go than my ailment, I have managed not to give in to doubt and agitation. I have even limited my on line research to just enough to ask sensible questions - at least three - tomorrow.
It would be nice to know something for sure - even if it is only 85%.
The sixth line of hexagram 5 says ; A solution appears that at first glance seems strange. Waiting with an open mind and a quiet heart allows you to accept truth in whatever form it arrives.
I can live with that.
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.
Hexagram 41 counsels a sacrifice of negative feelings, acceptance of the powerlessness of the ego against the currents of life and suggests contemplation of the principles of the Sage.
I agree completely. I am just not doing very well with it today!
For example: what is really useful...my left hand, my left foot and leg, the left side of my face.
My attitude needs some work today.
I sat on the steps beside a feral cat this morning.
She purred and leaned against me, making kneading motions with her paws. She rubbed her face across my shoulder, on my ankles, claiming kinship and possession.
Yes I discreetly feed the strays, but the others just holler in hope when they see me. This little lady comes running when my car pulls in the lot. She follows me on walks, climbs the screen door to the top in search of a way into my life. And she does it after she has eaten at times.
I don't know why my landlord hates cats. all pets, in fact. And I have no hard words for him because, when I asked, he was willing to let me pay this month's rent in two installments so I could take care of the tests I have to pay independent labs for. It is just sad not to be able to offer a home to a cat.
Furball, by the way, is thriving in his new home. Spoiled and treasured, prince (now neutered) of his domain. i miss him, but am glad not to have any added responsibilities at the moment.
I had amazing, hallucinatory dreams last night! I was destined to grow up to be the kingpin of some evil empire and I desperately needed to find an overstuffed, faded pink folder with the word YETH on the cover. I managed to find a manila folder with an illegible sheet of writing in it. Maybe there wll be further installments to come. I frequently have episodic dreams that continue their stories for months or in two cases, years.
Although I frequently have vivid dreams, i suspect the amazing textures and details of last night's epic relate to the lumbar puncture in some way. I feel a little light headed - possibly working yesterday was a mistake - but most of the residual soreness in my back is gone. And i am ravenously hungry, craving sugar which I normally eschew. I am a little nervous about indulging in my favorite mango sorbet, because I always eat it fast enough to trigger the pangs of BRAIN FREEZE which might be more of a headache than I bargained for right now.
I hate living tentatively! I despise that I have started second guessing every action wondering if it will hurt me, make something worse. Nine times out of ten, I cannot pick something up with my left hand any more, Washing my hair has become a fumble of unfeeling fingers that fold over on themselves and slide in strange directions. I cannot cup my hand to wash my face no matter how I concentrate. I am grateful for the years spent watching Americans eat as it taught me how to manage both utensils with my right hand. I can no longer manage a fork with my left.
My typing has improved because I am using one hand for that as well, and my speed is picking up although I have to watch the keyboard.
This thing, these things in my head are taking over my life. I didn't want to talk of this today, but it is always there in what I cannot do. Each disability reminding me there is a cause. Each moment spent inlistening to the wind shattered by the stagger when i move.
My nightmare is living inside my skin with me. So right now, when i would finally choose to hide from now, from what is real, I cannot. I have practiced very hard to embrace the moments of my life. Right now I am asking why?
If you google lumbar puncture the responses discuss needle size, headaches, the position taken, and there are neat pictures of the interlocking pieces of the spine bent forward, parting to allow access to the precious cord within. All they have to do, is stick a needle through the space, invade the spinal cord, withdraw fluid and retreat, They even give you a local anesthetic first!
Of course I know horror stories. Headaches that last for weeks, punctures that continue to leak, bad aim...why does no one tell you of the perfect, simple spinal taps that go without a hitch?
What no one mentioned, anywhere, is that the procedure hurts. That it is noisy. That it creates sensations in the body that are eerie and so far outside normal feeling response that your mind starts screaming 'somethings wrong' because, by definition, anything that cannot be identified is a threat.
Apart from a pinching sensation, there is very little pain where the needle is going in. (Well I gather they insert a cannula or sleeve and thread the needle through that so I only have one hole in my skin despite all the probing!) Anesthetic, remember? The first shock of pain was well within my usual tolerance level for discomfort. made shocking and unbearable by surprise and the fact that it felt as though my left hip joint was being hollowed out with a sudden dizzying shift to the feeling of something hot and heavy crawling through the spaces in my spine. I breathed deeply and suggested waiting for the anesthetic to kick in.
There were buzzing crunching noises echoing up through the bones into my head and the pain went on.
The strange thing was the internal dichotomy, I knew I could take the pain, it was not that intense and yet it was unbearable. My eyes filled and overflowed, I sobbed and sighed in shaky relief when he said relax. I said 'are we done?' he said, "we haven't found the space yet'.
It took a long time. Both subjectively and actually. Eventually I had to abandon the foetal position requested at the beginning, and sit, folded over to stretch the spaces into the spine as wide as possible. Ex-dancer, arthritis, small spaces.
At one point I said please stop. I was ignored. It was interesting to see that none of the really rude words floating in my head made it out into the air! Years of believing rude and ugly words do not improve difficult situations? Maybe just sheer common sense, if someone has a sharp object imbedded in your spine you do not want to piss him off!
The end result of all my pain was half a vial of crystalline fluid more transparent than air.
As I had neither headache nor dizziness, just a very sore back, I was allowed to leave at 5:30. A vast improvement on 6 -12 hours flat on your back post tap.
I will not have another lumbar puncture. if you ever need to have one, know that my experience was complicated by the arthritis years of dancing laid down in my spine, but also, go in knowing that it hurts and causes odd sensations as though the marrow is being sucked out of your bones. And the crunchy buzzy noise is quite unpleasant.
The pain is at times excruciating but those stabs are short lived, and not everyone reacts the same to every test.
I was able to sleep last night although turning was a challenge givem the increasing lack of response on my left side and a high level of pain across my lower back.
This morning I am tired, and debating whether or not to go to work. It will be easier to do the editing for Monday If I am there to direct the recording.I will have breakfast and if the vaguely unsettled feeling in my stomach continues I will stay home. I had a rough day yesterday
I was actually enjoying my day in the hospital for a while.It was vey quiet. no telephones. nothing to do or think about beyond the fact that outside was going to intrude upon my insides. Admittedly in a relatively small way although to my eyes there is never a SMALL needle when someone is proposing to shove it through my skin!
But my job was simple. relax, unwind, keep my blood pressure down and around two, let them harvest some of my cerebral/spinal fluid.
I actually fell asleep at one point. I woke with a shock that made my heart race when the privacy screen lost its battle with the very fresh breeze singing through the louvres and went over with a clatter, whacking me on the shoulder and along the back as it fell half on, half off the bed.
I yelped, put it back and dialed the windows slightly more closed, trading the interesting sensation of feeling slightly chilled on a bright Caribbean day for a more distant relationship between me and the less sturdy furnishings.
Shortly afterwards, lunch was served, Steamed fish, coucou and salad sith a banana for dessert. Coucou is made with cornmeal and okras, less firm than polenta, delicious with spicy gravy and fish.
Finally it was time for the procedure. i hesitated for a moment when my doc said he had not seen the chest film or ultrasound from Wednesday. After all, if someting definitive showed up there my spinal cord could perhaps remain inviolate. Then I consigned my needle hating inner wimp to perdition and called upon the part of me that donates blood and bites hard on the bullet. I signed the consent form
do not want to do this! And i managed to squeeze out a semblance of a poem to entertain myself only to have the parody king plotz all over it. well, at least he is consistent.
and i am in a bad mood! So let's make that the king of poor parodies.
About an hour ago my eyes opened. The transition from shut and asleep to open and awake was seamless, instantaneous. One second I was not there and then I was.
I have been rambling through the byways in my head, thinking thoughts that do not matter about things that don"t exist, doing what I must because I am designed that way. Trying to make sense of this.
I said to my sister I would really like to learn this lesson so I can move on. She said perhaps the lesson is not for you.
I have been thinking about that. When i read the comments posted to my last entry i teared up and thought of the two way connection we have established. Trish reinforced my self confidence, goose reminded me i am not alone.
Many people have offered emotional support and encouragement and maybe that is the lesson, for us all.
The certain knowledge that we see here every day that people care.
That the milk of human kindness has not dried up, has not soured completely. Despite the bad, the stupid, the sometimes outright cruel, the good is there. Is real, and waits for us to open up and share it.
Of course it could be on a much smaller less universal scale. just a reminder that no matter what is going on, the details matter. in the biggest drama of my life (from my point of view this is a biggy) the most important things have been keeping the laundry done, eating on time, making sure my work load is covered.
i have kept this very private -yes i am aware the whole world can read it here if they choose to, but I am just a thought, a bunch of concepts gathered here by words and anchored in the ether by the product of other peoples' imaginations. In the non virtual world, the numbers of people who are sharing my current venture are limited to family and the occasional close friend.
Deliberately. everyone always gets on my case about being too calm. I do not actually KNOW why i am not out on a binge or frothing at the mouth. Partly because I am observing. Right now, my poetry has retreated (I would retreat too if I didnt live in my head) but all this angst and passion will leave its traces that later will be shaped, will drive a flow of words to speak for me.
Actually, yesterday I did complain, i was hungry and thirsty and said longingly that I wanted someting to eat. Immediately I was told "don't think of food, you can eat after the tests are done" Well, I knew that. I just wanted to complain, to let my discomfort out.
In the past two weeks I have processed a great deal of indefinite information, none of it particularly what I would choose to have in my life, and the future is an even larger question mark than usual. So if I want to b*tch about being hungry, let me!
Reading back that last paragraph, it would appear that not only my eyes opened this morning. Anger is dawning. I was a bit afraid i was going to suddenly have a major meltdown and nuke everyone out of existence (just because I am calm does not preclude thought, feelings and analysis).
I have just sat here for several minutes, typing nothing, thinking nothing. time to stop.
if they let me out this evening and i can type I will give my first hand experience of a lumbar puncture this evening, but I have been told I may have to stay in overnight.
So later, or tomorrow. i'll be thinking of you all! Except when I am thinking about me!
This is a list of bajanblue's Blogs. Click here for bajanblue's Blog List
bajanblue Blog (295)