My right hand

Our bodies are like motor cars.  We know something is amiss long before we can get our mechanic to agree with our ‘inner’ diagnosis. 

A have always been (even if I have to say so myself) an exceptional if not brilliant typist; speed and accuracy my pride and joy.  Add to that nimble fingers running conversationally and poetically across the keyboard, and you have a person living for words, language, expressions, stories, non-stop talking.  Next to wordiness my life long love of figures, statistics, sums.  I cannot imagine any action I execute without counting – sand, dust, fruit, potatoes, beans, trees, cups of tea, cats, dogs, birds, sheep, pairs of socks, whatever.    

So when suddenly my intelligent center started sending out all these stop press messages insisting that it will interrupt and disrupt my motor skills and bring my communication channels to a standstill, I knew my body had a problem.  Just the mechanic wasn’t listening.

3 April 2010

Fun day with grand daughters at Wild Life Park (Reese’s first birthday).

It also marks my first ‘irresponsible’ behavior – I let go of my daughter’s Blackberry after taking a picture, dropping it on the ground, aghast at such horrific irresponsibility on my part, which is totally unlike my extremely cautious nature (luckily no harm done – thank heavens for child proof technology).

A week later

Coming back from the village at night, I cut out my car lights on a bridge in stead of dimming my lights for oncoming traffic.  Thankfully, no harm done except indent in self-questionable behavior. 

Life returns to ‘normal’ after the kids’ visit and I ascribe my out of character behavior to tiredness; nothing that cannot be fixed with a return to writing my blogs.  But something has gone wrong.  My frustration is just endless with this sudden inability to type accurately or fast.  It takes me forever to type emails and it borders on hopelessness trying to write a sensible hub.  I promised continuations of Life in the Countryside happenings and the love, joys, sorrows and entertainment afforded by my sheep; the cheekiness and bouncing of the kangaroos; the wit, hilarity and humor of the birds; the contentment with freedom and being surrounded by Australian wildlife of my Doberman pinscher; the amusement, elation, indulgence and comfort of my cats; the solace and charm of the shingle-back lizards; the pure delight and ecstasy of life in the countryside.

But bravely I tackle yet another story and blame all the typing errors on my computer (the poor mouse was instantly replaced with a new one which seemed just as ‘inferior’ as the previous one).  The mouse pad was – unnecessarily - relegated to the bin.  My annoyance with my bad typing started overshadowing my creative writing.

To add insult to injury, I had to face the fact that I suddenly could no longer do simple arithmetic; I needed a calculator to add or subtract the most basic figures and multiplication or division could just as well be Greek.  This was totally inexplicable as well as unacceptable for someone who spent the best part of her employed life as an accountant and statistician.  Then I learnt that I could no longer write.  I landed up sending my mother blank greeting cards with the address repeatedly corrected and crossed out – I became totally illiterate and dyslectic.  Any one watching the execution of my basic motor skills would wonder how on earth I ever qualified for Mensa.  I was starting to wonder myself.  I was grateful and thrilled that my reading ability seemed unaffected.

With my husband away in Egypt (towards end of May), I one evening landed up on the floor trying to open some cat food. I had no control over my right arm and hand and it swung around like a dead piece of flesh.  I felt like someone having a stroke and succeeded in phoning a friend, asking her to check up on me if I do not phone her within half an hour.  Shaken life returned to my arm and relieved I could tell my friend I am fine.  Speaking to my husband later that evening (per phone), he suggested it might have been a transient ischemic attack and insisted that I make a doctor’s appointment as soon as possible.  So, off to the doctor the next day, trying to find a logical explanation for all these weird symptoms manifesting itself in my body.  We love our GP, but sometimes we feel totally misunderstood.  This was another of those occasions.  Whatever I tried to tell him, he put down to depression induced by my daughter’s trauma when she lost her partner in a horror car crash (18 months ago at that stage).  He sent me off with a script for anti-depressants whereas I felt like kicking and screaming being so totally misunderstood with no logical or sensible explanation tendered for my symptoms.  I really felt like crying.

Driving home, my right hand and arm again went into stroke mode, scaring me and convincing me that I am having a mini-stroke.  This called for a wider search on Google for an explanation of my symptoms. 

My singular thought was: Alzheimer’s; or a very quick onset thereof.  In a way, it made sense, mostly: my inability to write sensibly; the absence of my accounting skills; bad typing.  But on the other hand, my symptoms did not really tie in with Alzheimer’s.  I researched it endlessly, did all the available on-line tests and did not come up with dementia.  I felt great relief and widened my search.  Carpal tunnel syndrome seemed like a good self-diagnosis (even though I had an operation two years earlier on both hands) but it made sense that clogged up arteries in my wrists could account for my malfunctioning hand; or perhaps a pinched nerve.  With no improvement in my symptoms but more of these funny attacks, some shorter and some more intense and longer, it was time for a return visit to my GP.  I walked away from his rooms, totally upset and despondent, with yet another script for a different kind of anti-depressant.  This time, however, as a consolation prize or pacifier, I also had a referral to visit a neurologist who was to run tests for renewed carpal tunnel syndrome.  Only snag was that the first available appointment was six weeks away.  But I came thus far; a few more weeks should not kill me.

Two weeks later I am back in my GP's consulting room.  My typing and handwriting have deteriorated ever further.  I am frightened by my right hand which seems to have a will of its own and creeps up on me when I least expect it.  The same hand no longer seems to know which way a cup should be put on a saucer; plates are turned upside down, I no longer know how to hold a knife; I do not know left from right; I have no idea of depth and space.  On which finger am I supposed to wear my wedding ring?  How do you hold a pen?   I keep on having these funny stroke-like attacks, my right hand and arm alien to my body.  My doctor says: depression.  Under duress (on the GP's part) I also leave with a script for a CT scan, plus the inevitable script for anti-depressants.  And I am beyond desperate.

I decide to wait the ten days out leading to the carpal tunnel test and leave the CT scan for afterward, once the necessity thereof has been discussed with neurologist.  I stack up on library books as that seems the only activity I can enjoy without interference from my right hand.  My husband is at his wit’s end with his wife’s fluctuating moods, her inability to concentrate and her lack of interest in anything other than reading.  He yet has to learn after so many years of marriage that I escape into the comfort of books when I am stressed or unhappy.

14 July 2010: I am eagerly looking forward to my neurologist appointment. Surely he will be able to tell me what is wrong. By now, I am convinced my carpal tunnel syndrome should carry the blame.

Just to explain: in Australia you need a referral from your GP to the next level up, in my case GP to neurologist. With the GP deciding to only request a carpal tunnel test, it means the neurologist cannot consult with you. He can only submit his findings of the test to the GP. With this appointment, the neurologist asked the basic questions relating to carpal tunnel, and I squeezed in my concern about my delinquent right hand and arm. We run through the tests and confirm a mild to moderate carpal tunnel syndrome in both hands, but not enough to warrant another operation. The neurologist requests a referral from the GP to allow him to consult with me, but in the mean time ‘hi-jacks’ the system by requesting some MRIs (Magnetic resonance imaging: head and neck spine). Saturday afternoon I am blasted with noises reminiscent of huge clanging iron bars, shunting trains, enormous copper drums, a personal drum and base concert without any talent and totally lacking harmony. I keep on telling myself there is an end to everything and that the banging and bashing and clashing will eventually have to end. You cannot fault me for optimism.

Before the MRI, I had to answer questions about my general health which included whether I have been diagnosed with any cancer. I had a sub-total gastrectomy (removal of my stomach and part of duodenum etc) twenty six years ago and subsequent surgery surrounding my digestive system but no cancer. After my MRI, and this should have told me more, I was again asked if I had been diagnosed with any cancer and whether the removal of my stomach (visible on the MRI) was as a result of cancer. I was told to return the next day for contrast ink MRIs but having to travel from the countryside to the city, and the next day being Sunday, I deferred to Monday; after all I waited this long, one more day cannot make a difference, or could it? Monday I returned home after another badly orchestrated drum and base MRI event, hoping that after all of this they can pinpoint my problem; my hopes now on a possible pinched nerve with carpal tunnel now being ruled out. But before Ieven got home, the neurologist had spoken to my husband, requesting us to come and see him the following day. I was still going to request a referral from my GP (following the channels) but GP had already been informed contacted by the neurologist and he could basically tell me that I am harboring a glioma in my brain; a type of brain tumor arising from glial cells. This was not the news or diagnosis we expected (what happened to my pinged nerve theory?) but seemed to be completely operable/treatable. So, optimistically off to consult with the neurologist.

21 July 2010: The bad news is that the tumor is 43 cm, the size of an egg. It is located in my parietal lobe, my eloquent brain, responsible for writing, typing, arithmetic. But the good news (apart from the bit that says the glioma seems to be accompanied by a questionable ‘cyst’, a baby not swaddled in love) is that a brain surgeon has been lined up for surgery to remove the tumor; the next step. Small problem though (I seem to be a draw card for small problems) is that both neurologist and brain surgeon will be on leave of absence for a few days. But we can live with that; impending operation and solution to my problem within reach. In the mean time, I join the ranks of cortisone users, medication required to reduce swelling of the brain. Those funny little ‘stroke-like’ attacks I experienced were seizures, the tumor fighting for more space in my already compromised skull space.

29 July, Thursday: The original brain surgeon still not available, but unfortunately my brain tumor not patient enough to wait.  The newly assigned neuro-surgeon immediately scored points with us; excellent track record, highly regarded in his field, absolutely professional yet gentle and caring.  Our goal post moved once again; my tumor is considered aggressive in nature and not as innocent as we would have wanted it to be and needs to be removed as soon as possible.  Unfortunately the location of the tumor, and its dubious little companion, might complicate the procedure.

The week fills up quickly with blood tests and more MRIs and yet more MRIs and suddenly Friday, 6 August closes rank on us.  8am I say a quick hello and much longer goodbye to the anesthetist and three and a half hours later I am handed to intensive care for safe-keeping.  Somewhere along the line I became aware of my daughter and her boyfriend welcoming me back to mother earth and my husband’s face also appears in my vision.  A slight numbness in my right foot and leg, and my right hand varying between numb and alive, seems to cover the percentage chances of things that could have gone wrong.  We are elated.  The surgeon removed as much as he could of the tumor without impinging or sacrificing brain function which unfortunately means that part of the tumor had to be left which will allow unsolicited tumor growth.  But for that there are also solutions; my proactive husband researched and searched and queried and came up with a clinic in Austria that can curb and reduce any further growth of this tumor.  Twenty four hours later I am out of intensive care and the day after that (Monday) I am able to enjoy an unassisted hot shower and a couple of walks down the passage.  I am doing so well (albeit on high dose of anti-seizure tablets plus the cortisone for edema of the brain) and by Tuesday morning (5 days since my brain operation) I can go home, feeling so well and convinced that whatever problem I had is now something of the past.   My biggest concern at this stage is that I cannot wash my hair.  Or maybe the second biggest.  Every night I try to go through my school tables but I just cannot get past 2 x 2; I cannot read the clock on the wall; the telephone console doesn’t make sense at all; I find it difficult to tick menu choices in the allotted squares.

Wednesday 18 August: exactly one month after we saw that first white egg on my brain. Apparently tumors/cancers introduce themselves on X-rays, CT scans or MRIs cloaked in white. Ghostlike? A shroud? Today is also the day I am having the staples removed. Medicine has come a long way. There are no enormous bandages around my head; my scalp was not relieved of all my hair and the cranial opening into the left side of my skull (something about brain tumors to the opposite side of the actual tumor) does not look menacing at all. I still lament the fact that I am still not allowed to wash my hair. Visits to the neuro-surgeon’s rooms have become a family affair. My 27 year old daughter has swapped roles with me and has become the brooding mother hen. She takes a seat with me and her dad, her boyfriend in tow, keen for a positive feedback as far as the biopsy is concerned. The surgeon is his gentle self, removing the twelve staples from my skull. Making small talk in-between staples, I inquired as to the biopsy. Politely he suggests that we should perhaps concentrate on the job in hand before we get to the next stage of our visit. Ever the optimist, I can already hear him telling us (my husband sits in the chair next to me) that it was no issue and I am as good as new. That is what happens in movies; my life, I have learnt, does not follow any script. I love my neuro-surgeon. Ever so gently he informs us that I have been promoted to a Glioblastoma multiforme which is a grade four brain tumor (I started out with a glioma – initially; it progressed to an anaplastic oligodendroglioma Grade 3 on sighting during under surgery and then eventually settled on the highest sport once the biopsy was double checked and rechecked before it was confirmed). This is really not panning out as expected. I can visualize my Google searches: Glioblastoma multiforme has the worst prognosis with less than a 12-month survival after diagnosis. I return to reality and the voice of the surgeon. The positive attitude of me and my husband is what will see us through, he says. Having a quality life, faculties intact, should rate higher than in impaired life. Put differently: sacrificing quality for a longer span of life but with diminished brain function and physical impairment as the ‘unwise’ alternative. Radiation and chemotherapy are placed on the menu as the only options, to stretch a few months to slightly longer. As easy and quick as that; a life sentence with very short preamble and no good ending; nowhere to run or to hide.

My biggest heartaches are the pain in my daughter’s eyes and the slump in my husband’s shoulders; tears pouring through my daughter’s eyelashes in the oncologist’s rooms and the powerless sobbing of my husband at night holding my hand.

It is almost 5 months since we noticed the first symptoms, many of them in hindsight. We have learnt that radiation is the preferred treatment, supplemented by chemotherapy, both options not without harmful damage. Both these treatments are not my personal choice. We have opted for a clinic in Austria, a cancer clinic, employing various modes of treatment with emphasis on treating the whole body and soul, building up the immune system, combining treatments that are wholesome for the body with no harmful effects. In the end, our main aim is to afford me the best chance on the longest life without damaging my brain, body or mind. I would like to retain thoughts, perception, emotion, will, memory and imagination for the longest time possible. Even though I can no longer multiply or subtract, even though my typing is excruciatingly slow with more hits on the delete key than logically possible, even though I can no longer sign my own name, even though my writing will make my pre-primary teacher want to change her occupation, I want to retain my thinking, reasoning and knowledge until I am no longer around to consider it of value. On the other side of my eloquent brain I have my language skills, my communication, my reading. In a corner I have tucked in consciousness, memory and recollection. I cling to my healthy mental state, my sanity, with my life.

At night, waiting for day to break and my horrendous headache to subside, think of all the reasons why I need to fight to live a bit longer: I am only 55; I haven’t even reached the age of retirement. I need to be around for my four cats who still have twenty years or more ahead of them. I plan for my Doberman pinscher to live at least another decade and break the record for the oldest Doberman alive. I want to ensure long and good lives for my three pet sheep. And what about all the birds and kangaroos and bobtail lizards? I want to watch our young trees grow tall. I want to sit in the sun with my husband, reminiscing about the past and dreaming about the future. I want to be around to help rear my grandchildren and the grandchildren to come. I want to bake many cakes for our two granddaughters and the little one we are eagerly awaiting due to arrive in December. I want to design our youngest daughter’s wedding dress and be her wedding planner. I want to hold and love her first child. I want to stick around to see which of the gorgeous girls our son has been dating will eventually walk away with his heart.