Only Deirdre can post all these "supposed to be serious" subjects and make me laugh out loud, till I have all my colleagues’ attention and then have to shyly explain that my friend just had brain surgery... Ana de Jager

Brutal Honesty

BY DEIRDRE KOHLER

SUPPORTING AND ENDORSED BY:

Brain Tumour Buddies

Registered Charity No. 1135842

btbuddies.org.uk

AuthorHouseTM 1663 Liberty Drive Bloomington, IN 47403 www.authorhouse.com Phone: 1-800-839-8640

First published by AuthorHouse 9/14/2010 ISBN: 978-1-4520-7894-6 (sc)

Printed in the United States of America

This book is printed on acid-free paper.

Because of the dynamic nature of the Internet, any Web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Brutal Honesty

© Deirdre Kohler 2010 All Rights reserved. www.deirdrekohler.com

No part of this publication may be copied, transmitted or reproduced in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the author.

Photography : Alan & Lynn PageCover Design : Jamie Bell - Fury Fighters www.furyfighters.com Editing : Felicity Smith

'When I stand before God at the end of my life, I hope that I would not have a single bit of talent left, and  

could say "I used everything you gave me"’

Erma Bombeck

Amazing Grace, how sweet the sound,That saved a wretch like me.I once was lost but now am found,Was blind, but now I see.

T'was Grace that taught my heart to fear.And Grace, my fears relieved.How precious did that Grace appearThe hour I first believed.

Through many dangers, toils and snaresI have already come;'Tis Grace that brought me safe thus farand Grace will lead me home.

The Lord has promised good to me.His word my hope secures.He will my shield and portion be,As long as life endures.

Yea, when this flesh and heart shall fail,And mortal life shall cease,I shall possess within the veil,A life of joy and peace.

When we've been here ten thousand yearsBright shining as the sun.We've no less days to sing God's praiseThan when we've first begun.

Foreword

Life can be wildly tragic at times, and I've had my share. But whatever happens to you, you have to keep a slightly comic attitude. In the final analysis, you have got not to forget to laugh. - Katharine Hepburn, 05/12/1907 - 06/29/2003

This book is about a journey. My journey with friends, family, strangers, myself and God. It is not a lesson. It is meant as a story and you choose the lessons from it yourself – as I have.

Going through surgery was a very dark and lonely time for me. I didn’t think that there was a God. I prayed and felt nothing. I have always spoken to God and felt like I got answers. This time I felt “forsaken”. The only thing that was there for me to hold on to was that I knew that I would be fine. I didn’t have a fear of death. Call it denial, I would say it was a promise from God that I would be fine and I would receive the peace that came with that promise.

When I sit for a minute and look at the pain in my life and the valleys I have walked through, despite these, I see that I have been blessed. It’s time to remember those blessings. It is the first time in my life that I can honestly say there is power in prayer.

Deir"e Kohler

My eyes opened and I realised that I was actually normal. We are all weak and have journeys to travel. Some thing I have realised is that it is when we are weak, that we are strong. We can’t be labelled. That is the richness life offers us.

This journey has been both long and short. It has been 3 years of seizures, medication, operations, chemo & radiation. There are a few things that I know are true in my life and that have helped me on this journey. God is the source of life, love, provision, safety and faith. He has blessed me and …

Romans 8:28

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.

Before I leave, there are things that I have learnt: Don’t tell God you can’t do something. He knows you can.You know when there is something wrong. Listen to your body and make sure you get it solved.Life is short, if you feel like doing something, do it. Don’t be limited by what you think you can do.Get a wig! You won’t feel ill

I hope that this story will enrich you

Brutal Honesty

Deir"e Kohler

Prologue

Why can’t I speak? I think my blood sugar must be low. I should eat. What can I eat? What is food? My eyes are blinking very rapidly. I go to the bathroom. No-one must see me. I feel stupid. It will go away. I don’t know how to lock the door. I sit on the seat so that I won’t fall. If I have low blood sugar, I need to eat, so I look for food. I don’t know what food is. I grab the air freshener and try to spray it into my mouth, thinking it is food. (At least I will have a nice lavender-scented mouth.) Luckily I don’t know how to open it. I experience everything. I am thinking and trying to rationalise what is going on. Although my thinking of what I want to do is there, nothing around me makes sense.

I get tired. I lie on the floor. My eyes are sore and flicker; my head is pounding and the noise is intense. I worry about the baby in my belly. “Dear God please help”. I want to get up. I don’t want to ask for help, I feel ashamed. I will just lie here. It will go away. What is happening?”

Brutal Honesty

Deir"e Kohler

Chapter 1

August 2008

Well finally I am here!I know it's a strange comment considering I am off to Cape Town for brain surgery. We drive down from PE and stop half-way, in George. Four hours of travel in a car is all I can manage. We continue the following day and drive for another 4 hours. I am too scared to try flying. The month of waiting for this day has been most frustrating. The doctors phoned me yesterday to tell me not to come in as planned because they haven’t booked me - but I can fill out the forms in the meantime. I am angry. I have been waiting for a month now since I went into casualty. I was told that I would have to wait for surgery as the doctor was booked up. Being stuck at home, mostly in bed, isn’t great. Sometimes I vomit from the pain but mostly I sleep. Not only that, they are going to postpone the surgery to Friday. This isn’t part of the plan. How long can they prolong the agony?

Blog Entry : 17 August 2008

Last night James had decided to hire some movies to calm the nerves. My request – “no violence”. He hired “The Bucket List” – without reading the synopsis. It was about two guys with brain cancer. Not exactly what you want to watch at this stage of your life! I looked at him sideways. “Great movie James!” I couldn’t sleep

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Pa# 13

anyway – off to hospital the next day was daunting enough so we spent the night talking.

Email sent to friends and family on 17 July 2008

Hi All

I just wanted to say a big thank you to all of those who have sent emails, prayers, sms’ and calls. I think I am on a zillion prayer lists. The kindness and concern has been overwhelming. Sorry to do the group thing, I just don’t know who I have told what… here are the details:

A lot of you may have heard, others not … I have to go for brain surgery. No, this is not something out of “House”! I have known this day would come for 2 years now… Not thinking it would actually happen though. The cause – forcing me to realise that there is no more delaying – the mother of all headaches caused by intracranial pressure. So bad that I ended up in the emergency room. I was given a bevy of drugs which kicked in, followed by 15 hours of sleep in a 24 hour period. The tumour has continued to grow and is now about 6.7cm x 5cm x 4cm. It is in my left temporal lobe. This makes the operation delicate as it is in my speech and language area.

I am booked to go on the 18th of August 2008 but we are hoping it can be a bit sooner. I am bored and the waiting is driving me crazy. I have been told to rest. Funny how you are told not to stress before you have brain surgery – did I forget to mention brain surgery? The operation is in Constansia Berg Medi-Cross Hospital in Cape Town. My Neurosurgeon is Dr Melville and my Neurologist is Dr Butler.

Deir"e Kohler

Pa# 14

Before the operation, they do a few days of “mapping They put a electrode in and run various tests to see which parts of the brain respond to different stimulation.

James & I are both apprehensive about the surgery but we both feel positive about the outcome. We will have to stay in Cape Town. I will be in hospital for 2 – 3 weeks and then in therapy for 3 months. We are not sure if I will have to stay in Cape Town the whole time. I don’t have all the details yet.

About the hair – it freaks me out hugely! I am hoping that they will only shave a portion. Other wise I am going to try the extension thing. My hair is so long and I would hate to loose it.Chat soonD

Note : my initial blog crashed so a lot of the entries here were recovered from my backup system.

Blog Entry : 19 August 2007

We drive to hospital. It’s Tuesday morning and early. I spend the morning doing memory and logic tests - quite grueling. I don’t think I do well as I am so tired… The women says she has never seen anyone who answers like I do. When she gives me a sequence of 12, I answer in order. It takes me 3 attempts to master 11. Don’t ask me why. I usually can’t remember the last one. I structure everything in my brain into rows of four – that’s what I see. I give her answers in the same order (she hasn’t seen that before). I usually only remember things by their first letter and then plough them though my oracle database system to find the word. I do

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know that because the tumour is on my left side it affects my speech area.

I go to the ward and my bed. I am with 3 other people. They are all wired and we are right next to the reception because that’s were the computers and TV screens are. They watch everything we do – like something out of big brother. I am not sure what to wear. Should I get into pyjamas? Its 2pm! I decide to wear a tracksuit. Thank goodness it isn’t hospital issue. I might as well look trendy. I have to wear something that is a zip up because it is going to be really hard to take it off once they have wired my head up. My mother runs around taking photos…

Blog Entry : 19 August 2008

So now I wait to have a seizure. What a fun prospect! I have had to go off my medication. This way they can map the areas of my brain that are being affected by the tumour. My head has been wired with a whole lot of electronic nodes attached to my scalp. It pinches a bit. I can’t move out of my bed because there is no such thing as blue tooth. It is plugged to the wall. I look like something from a cyborg movie. The “glue” smells horrible and causes my hair to tear… not to mention my eyes to water. Not that I can keep my hair – I will just hold on to it in the meantime.

Blog Entry : 20 August 2008

The guy next to me had a seizure this evening and it is quite scary to say the least. I looked at him in horror – the girl next to me screamed for me to push the emergency button. It took me a minute. It is all part of the mapping process. The girl next to me has been waiting for a seizure for three weeks. They can’t operate

Deir"e Kohler

Pa# 16

until she has one as they have absolutely no idea where it is coming from. She only started getting seizures at the age of 30, when her dad contracted cancer… strange. So tomorrow they are going to use electric impulses to try to make her have a seizure. …Wow. The doctor suggested that we drink alcohol – it aggravates the brain and increases the risk of a seizure. That sounds good to me – we might as well live it up!

I feel re-assured because the doctors and nurses are really on track and organised. It’s great seeing people come out of surgery and recovering well. They say the boredom is the worst. We are literally in bed and only unhook to go to the loo / batch… wrong word – I mean lunch (brain tumour mishaps) I took a walk to the coffee shop with my wires in tow. The wires were flung over my shoulder. Some kids couldn’t keep their mouths shut staring in horror! I just needed to get out of my bed and didn’t care.

Blog Entry : 21 August 2008

I have been here for 2 days now. I really didn't have a good start this morning. My headache was quite bad but as usual it gets better as the day progresses. I am on cortisone to help with the swelling. I hope it doesn’t make me fat. I have been on it for 5 weeks now. By the evening I am back to my normal self …I don’t know how that works. I haven’t had a seizure. The doctor says he will look at my results and see if I can have the surgery anyway.

All the docs have been to see me in preparation for the surgery this morning. They don’t give you much time – about five to ten minutes each. Most of the results of the tests over the past 3 days have shown that the problem area is definitely around my speech and memory centres. (not great news) The good thing is that all other

Brutal Honesty

Pa# 17

brain activity is working 100%. The Neuro phycologist (yes there actually is a position like that) said that my frontal lobe activity is actually very strong and seems to be compensating for the lack in my temporal lobe. It does make us wonder. Perhaps then I have had the tumour since childhood and I don’t actually have to worry much.(I really hope this is the case)The advantage with the tumour being in one spot is that I don’t have to worry about their operating in any other area of the brain. (if you can call it an advantage) So we are going ahead with inserting the internal electrodes. This in layman’s terms means that they drill through my scull and put in a “chip” (I don’t know what the formal terms are) They will be putting a 64 points (8x8) in the area but on the outside of my brain. They will mostly monitor my speech and language. When he does the main surgery the surgeon will use the analysis to make sure he doesn’t go into “working” areas and only focuses on tumour.

I have had such good reports on Dr Butler (Neurologist) and Dr Melville (Neurosurgeon) they are considered as highly ranked in the world. There are a lot of foreign patients here which just shows that South Africa is at least on the world map. Now its time to tackle this tumour and get on with my life!! I am feeling positive. This will be over soon. Good night and I will get James to take some pic’s and video’s of the surgery and afterwards. I will get my mom / James to put up a note on my blog after surgery on the status…then you,too, will know what’s going on. Please don’t laden them with calls – send an SMS if you want to know what’s happening. Pray for me and see you soon.

Deir"e Kohler

Pa# 18

Blog Entry : 22 August 2008 Just before surgery

I still have a headache. I have asked one of the guys in the operating theatre to please take photos / DVD of my surgery. I really want to see what it looks like. Plus I want to show my family back home. I don’t want anyone here with me. I am wearing a white hospital gown. Obviously no clothes or jewelry allowed. So one hour to go – I am sure it will be fine – I hope!

Brutal Honesty

Pa# 19

Chapter 2

2006

I don’t fear dying, what I do fear is how I die, and when. Being at a funeral and watching a spouse or children being left behind, is heart breaking.

People tell you not to think of death. That is totally unrealistic. The only people I know who probably don’t think of it are children. The rest are lying. Obviously we all have to die. It’s just harder when it is always hanging over your head.

So yes, I have been diagnosed with a brain tumour, and yes I have thought about how terrible it will be to die. Now what do you do when you are given the terrible news that you have a dread (and dread I do) disease? Well if you are like many people who have a serious illness you do one of the following things: take up art, travel, write a book, go onto the internet, put up a website, educate yourself, change jobs, the list goes on. I decide to do all of them. What the hell, its not like I am going to lose anything.

Deir"e Kohler

Pa# 20

I had gone to the gynecologist and was told I had a brain tumour. Fortunately he didn’t have to do an internal diagnosis to find that out! I had decided to go to my gynecologist after I had tried to make a toast out of boiling water, raw egg, chocolate (but of course) and dry bread. Now before you think I am a nut case, let me explain. I was having very strange symptoms. During my pregnancy I would get these weird dizzy spells, a feeling of hunger and have difficulty speaking. So I thought I had low blood sugar and my body was telling me to eat but because I was so light headed I couldn’t think clearly. So off I went to the doctor and ranted (as we should) about that fact that I was still going through these “normal” pregnancy symptoms. Well, after a routine “womanly” check up I ended up with a brain tumour. It wasn’t expected to say the least. Before the doctor sent me off for a brain scan I asked: “Isn’t that a bit excessive”

“Well we will soon find out”

After an hours wait, I went into the MRI waiting rooms.

“Please take off all your clothes and jewellery, except your panties” “There is a locker around the corner”

I striped down to a horrible hospital issue ‘outfit’ luckily there wasn’t an open back. I had just seen a butt shot from an old man and was feeling slightly queasy. I have quite skinny, white ankles and was very aware that I hadn’t shaved my legs.

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I held up my breasts as I walked. Having had three children I need support.

“Please lie down on this bed. We will put a headgear on you. Don’t worry we can see and hear you if you need assistance. The machine will make a bit of a noise”

They put a miniature, token blanket over me that left my toes uncovered. They pushed the bed into position. The MRI machine started. Bloody hell, a little noisy!! It made a jet sound like a whisper. To add fuel to the situation, the noise kept stopping then changing. Every time the sound changed, I got a fright. I felt cold, really cold. At least it kept my breasts perky. Unfortunately it also meant that the unshaven hairs on my legs stood up about a metre high.

It stopped. I felt myself being dragged out.

“Mrs Kohler, just stay still, we are going to give you a small injection. It will just be a quick prick. It is a contrast that we are injecting and will have no side effects. Just stay where you are, it’s not much longer to go”

“Do you have another blanket?”

The blanket made little difference as I felt that I was hypothermic anyway. ‘Contrast’, that doesn’t sound good. ‘Don’t worry about it’ I told myself.

Deir"e Kohler

Pa# 22

Finally when it was over (and quiet) I was told to get dressed and go back to the waiting room.

“Do you want to wait for the results or should we send them to your doctor?”“How long will it take?”“One to two hours”“I’ll wait” I was far too curious not to.

Somehow as I wondered around the hospital, getting a cup of coffee, I knew something was wrong. I had known for a while. A couple of years before, I had fallen one morning (while on the toilet!) and hit my head quite badly on the shower corner. (No I wasn’t drunk.) The swelling was quite bad. I had concussion and a big egg on my head. (I still bear the scars to this day.) I spent 2 days in bed. Now the worst thing in life for me is vomiting. It was hours of vomiting, till all that remained was green bile, that I hated. Then I had vertigo for a week. Vertigo is very strange and causes you to feel that you are constantly at sea and can’t walk properly. It genuinely makes you sea-sick. The doctor had told me that sometimes people do fall while going to the toilet first thing in the morning because when we stand the blood rushes from our head causing us to faint. It stood to reason, thinking of what this scan could mean, that I thought these two events were related. It was at that time when symptoms had started for me. The bump is on my forehead, the left side.

“We have your results”“Thank you, I will take it to the doctor”

Brutal Honesty

Pa# 23

I didn’t take them straight away. I sat on a bench outside the rooms. I opened the envelope frantically and tried to understand the medical jargon. A few words I could figure out, but most were beyond my understanding. When I saw the scans, I saw a large white mass in the bottom right of the picture. (I later found out that the image is mirrored and so the tumour is on the left) My heart was racing. I went upstairs, back to my gynecologist and showed him.

“This is serious. I am going to refer you to a neurosurgeon”

I took my scans and walked down the stairs. I started laughing in shock and disbelief. I have had this problem all my life, when I get emotional, I don’t react by crying but rather I laugh. I got into trouble a lot from this little affliction. (Especially at school!) I sat on the same bench and phoned James.

“Hi babe, are you busy?”“Hi, no”

“I have had very interesting news, it doesn’t seem good. I am coming to your office”“Ok, are you alright?”“Fine, see you now”I now understood why I had tried to eat my identity book on one occasion.

Deir"e Kohler

Pa# 24

Nothing travels faster than the speed of light, with the possible exception of bad news, which obeys its own set of laws.Douglas Adams

I have no idea what James and I did after that. What I do remember is that there was a flurry of phone calls and a showing of pictures to family. We decided not to tell the older children. They were probably the only people who didn’t know. (My family aren’t exactly good in the ‘don’t tell anyone’ department.) The scan had not mentioned “tumour”, so no-one thought it would be that bad.

As has become the custom with me, I rushed onto the internet to interpret the medical jargon on the report. It didn’t help much as I didn’t know what I was looking for. Though it did leave me a bit wiser than when I had initially looked at the report. I dropped the scans off and set up an appointment with the neurosurgeon.

At the first appointment, the doctor told me that he wasn’t sure what it was. He said I should set up another appointment. (a bit surprising) I went again and got the same answer. I was angry that I had to pay twice for the same result. Its like an architect saying that he can’t design your house, but come again and maybe I can – don’t forget the bill. So I was referred to a neurologist. I called and was told that there was a 6 month waiting period. What was I meant to do in the meantime? Fortunately I got a call 2 weeks later to say that there was a cancellation and he could fit me in.

Brutal Honesty

Pa# 25

The neurologist spent an hour with me. He said that my seizures seemed to be ‘complex partial’ based on what I had described to him. He gave me the medical description.

“A seizure stemming from a localized part of the brain indicated by the presence of a state similar to a trance, varying degrees of awareness, and the manifestation of purposeless behaviours or motions. The seizure may be followed by an indeterminate period of confusion, garbled speech, poor mood, and an inability to recall the events of the episode.”

Simple partial seizures are further subdivided into four categories according to the nature of their symptoms: motor, autonomic, sensory or psychological. Motor symptoms include movements such as jerking and stiffening. Sensory symptoms caused by seizures involve unusual sensations affecting any of the five senses (vision, hearing, smell, taste or touch). When simple partial seizures cause sensory symptoms only (and not motor symptoms), they are called "auras."

Autonomic symptoms affect the autonomic nervous system, which is the group of nerves that control the functions of our organs, like the heart, stomach, bladder, intestines. Therefore autonomic symptoms are things like racing heart beat, stomach upset, diarrhea, loss of bladder control. The only common autonomic symptom is a peculiar sensation in the stomach that is experienced by some patients with a type of epilepsy called temporal lobe epilepsy. Simple partial seizures with psychological symptoms are characterized by various experiences involving memory (the sensation of deja-vu), emotions (such as fear or pleasure), or other complex psychological phenomena.

Deir"e Kohler

Pa# 26

Most people know seizures as‘ grand mal’ (like me at the time) This is where the person loses consciousness, though their eyes remain open, and convulses on the ground (very scary to see). Some people (like me) don’t even know they are having what is actually called a seizure. Having seizures means you have epilepsy. Not something I would have defined myself as having. Now that we knew the symptoms, it was necessary to find the cause. The doctor was very kind and said that he would look at my scans and see me after-hours, a few days later. I realised that he really didn’t have anything to tell me, that he would have to do a bit of investigation. After a few days of nail-biting waiting, I was called in to see him in the evening. He told me that I had a tumour and it might be something called a DNET. (Dysembryoplastic neuroepithelial tumor) He referred me to another neurologist in Cape Town who specialises in temporal lobe epilepsy and seizures.

Another doctor.

I was beginning to feel like a lab rat. Once again I called the new neurologist, Dr Butler. We saw him 2 weeks later. James and I flew up, and were there for two days to see him for one hour. This time the meeting was fruitful. in that I got some information. He told to me that it could be either a DNET, astrocytoma or oligodendroglioma.

Dysembryoplastic neuroepithelial tumour, commonly abbreviated DNT or DNET, is a type of brain tumour. It appears similar to

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Pa# 27

oligodendroglioma, but with visible neurons. It falls into Grade I of the WHO classification of brain tumours and, generally, has a good prognosis. It can cause epilepsy.

Astrocytomas (including glioblastoma multiforme)This is the commonest type of glioma in both adults and children. Astrocytomas develop from cells called astrocytes. The astrocytes are the 'bricks and mortar' of the brain that support the nerve cells (neurones). They probably do other things too (but we don't know what as yet). Astrocytomas can be slow or fast growing. Some are very localised ('focal'). This means it is easy to see the border between tumour and normal brain tissue on a scan or during an operation. Focal astrocytomas are more often diagnosed in children and are not common in adults. Other astrocytomas are called 'diffuse'. These do not have a clear boundary between the tumour and normal brain tissue.

Anaplastic astrocytoma (also called grade 3 astrocytoma) and glioblastoma multiforme (GBM or grade 4 astrocytoma) are the commonest brain tumours in adults. These are malignant brain gliomas. They can sometimes spread to other parts of the brain.

OligodendrogliomasAbout 1 in 20 brain tumours (5%) is an oligodendroglioma. These develop from cells called oligodendrocytes. These cells make a white fatty substance that covers nerves, called myelin. It helps the nerve signals (impulses) to travel along the nerves more quickly. Oligodendrogliomas are most often found in the forebrain, in the temporal or frontal lobes. They can be fast or slow growing. They are most likely to be diagnosed in adults, although they do occur in young children. Sometimes this tumour can spread within the

Deir"e Kohler

Pa# 28

central nervous system, in the fluid that circulates round the brain and spinal cord.

Based on my internet research, the DNET would be good news as it never turns malignant. The astrocytoma and oligodendroglioma, however, usually turn malignant. The astrocytoma usually grew faster. Well I sat there in shock. The saying no news is good news became really relevant. I didn’t get emotional but rather asked a bevy of questions that would help me understand what was going on.

Brain tumour grade - benign or malignantBrain tumours are put into groups according to how fast they are likely to grow. There are 4 groups called grades 1 – 4. The cells are examined under a microscope. The more normal they look, the more slowly the brain tumour is likely to develop and the lower the grade. The more abnormal the cells look, the more quickly the brain tumour is likely to grow and the higher the grade. Low grade gliomas (grade 1 and grade 2) are the slowest growing brain tumours.

You may have been told you have a benign tumour or a malignant tumour. As a rule of thumb, low grade tumours are regarded as benign and high grade as malignant. By benign, we generally mean

The tumour is relatively slow growing It is less likely to come back if it is completely removed It is not likely to spread to other parts of the brain or spinal cord It may just need surgery and not radiotherapy or chemotherapy as well

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By malignant, we generally mean

The tumour is relatively fast growing It is likely to come back after surgery, even if completely removed It may spread to other parts of the brain or spinal cord It cannot just be treated with surgery and will need radiotherapy or chemotherapy to try to stop it from coming back

With other types of cancer, these black and white explanations of benign and malignant work well. But with brain tumours, there are a lot of grey areas. Some low grade astrocytomas can spread to other parts of the brain or spinal cord. Radiotherapy and chemotherapy are sometimes used to treat 'benign' tumours. Even a slow growing tumour can cause serious symptoms and be life threatening if in a crucial part of the brain. (Cancer research UK)Here is the report I got from my Neurosurgeon 14 August 2006

Dr James ButlerConstantiaberg Medi-ClinicBurnham RoadPLUMSTEAD7800

Dear James

Re: Mrs D. Kohler My ref: 18348Thank you for asking Mr. & Mrs Kohler to see me at short notice on 14.08.2006.The background you know well.

Deir"e Kohler

Pa# 30

For the past nearly two years the patient has experienced repeated episodes, which are typical of partial seizure activity.

The MRI scan reveals a posterior inferior temporal lesion that is almost certainly a low-grade lesion, either Dnet or Glioma. It is hard to be categorical about the histology on the MRI only.

We have had a fairly long discussion about the various forms of treatment that are available to her.

Whatever the lesion is, I doubt that a radical gross total resection will be a wise chose.Concerning histology, both low-grade Glioma and Dnet usually do not need adjuvant treatment in the early phase of the problem, therefore an immediate biopsy is probably not essential.

Concerning the management of seizure activity, the first chose would be anti-convulsant medication. If we were to come to surgery, one would need to consider the advisability of pre-operative EEG monitoring in order to definitively deal with the seizure activity at the time of any tumor biopsy-subtotal resection.

At present, Deirdre is not happy to contemplate any surgical intervention. I have suggested that she maintains close contact with her neurologist concerning the seizure control and that she reports any new developments. It would be wise to have a repeat MRI scan at six months in order to evaluate any change that might occur.

With kind regardsYours sincerelyR.L.MELVILL

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I was put on medication to stop the seizures (or at least to slow them down). I started small and over a month the dosage was increased to 200mg per day – taken in the morning. I didn’t seem to react adversely so I kept it up.

So there I had it. I was 31 years old with a 7 month old baby (Leo), a 9 year old son (Adam), an 11 year old daughter, (Anastasia), a well paying job, a newly built house – still needing work, a husband (James) stressed at work and a brain tumour. What am I supposed to do with this information? Nothing sounded great and I definitely didn’t want to look at what this could potentially mean to my future. My family let the churches know and I was put on the prayer lists. Close friends of my mother were called in to pray over me. I decided to plan a trip overseas and take the kids with me. Why not? When you are told that you have some sort of serious illness, you want to live with a bit more urgency.

Deir"e Kohler

Pa# 32

Chapter 3

2007 – “I once was lost but now am found”

The internet became my solace. I was looking for and found a series of entries about people who had, or knew of people with, brain tumours. The searching took a long time and I would stay up till late at night. One night I came across the site of Sandy. I went through her site, reading about her experience with a brain tumour. In the last entry I found that she had actually passed away. It was really upsetting and yet it made me curious at the same time. Looking up her husband’s blog, I found his address, and plucking up courage, asked him for more information on Sandy and the tumour.

Emails between Dan O’Connor & myself - March 2007

Dear Dan I hope this email reaches you. I am so sorry to hear what happened to Sandy, and at the same time, I am grateful that there is a website that can share it with the world. I have been feeling really lost. I have found your website quite by accident while looking for some thing else. I am 31 years old and have been diagnosed with a low grade astrocytoma in my temporal lobe.  

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 I have just had my third child and he is one year old, I found this news out 6 months ago when (after many sleep deprived nights) I started having seizures. What type of tumour did Sandy have, and do you feel that she should of had surgery?  We can't decide what would be a better option because we get so many conflicting opinions. We are still trying to deal with the shock of it all.  I really hope that you are managing. I feel so much for my husband, who I adore, to have to go through this with me. I feel like I have let him down in some way.  Please, if you do not wish to talk about it, don't feel obliged.

Dear Deirdre,

Thank you for writing. And I am sorry to hear of your diagnosis. Sandy was diagnosed with a grade 2 Astrocytoma in 1999 (after 3 or 4 years of mis-diagnosis, a seizure finally got her an MRI). If you care to read her journal chapters at sandybeardsley.com, she wrote very powerfully and directly about her experience, including the initial radiation treatment which we believe bought her a lot of time -- they felt that it was too risky to operate on her due to location deep in the occipital lobe. But her doctors told us early on that it would come back at a higher grade (more aggressive) someday, and it did, six years later. She actually did have surgery, twice - in October '05 and May '06. This experience is on her blog website at blog.sandybeardsley.com -- in my words -- if you click on the months in the archive links. The surgeries also bought her some quality time, but due to the changed state of the tumor -- to a grade 4 Glioblastoma -- there was nothing else they could do for

Deir"e Kohler

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her, and we went to one of the best places in the U.S. at Stanford University Medical Center.

My best advice, which was Sandy's also, is to get as many doctor's opinions as possible. None of them are gods, but collectively you can get a sense of the best course of action. Have you had a biopsy of the tumor? Or is diagnosis based on MRI? Also, do some research on a radiation treatment called "Cyberknife" (a very precise delivery of radiation to the tumor) -- it may be an option for you, though I don't know if it's available where you are. It wasn't an option for Sandy, but it has apparently helped a lot of people and it's not as invasive as conventional surgery.  Travel to the U.S. if you have to -- there may be more options and leading research going on here. Read Sandy's words and mine, as there's a lot in there.

And know this -- you are not letting your husband down. As long as you keep researching, and fighting, and living strong... you'll never let him down. That's how Sandy lived, and that memory of her spirit and how she did not let cancer define her... she just kept living life and not taking a moment for granted...  that's what keeps me going, to honor that spirit. So Live Strong. And enjoy and take care of those beautiful children.

Please let me know if I can help in any way. Take care,Dan O

Dear Dan Thanks so much for your reply, a lot of things may seem obvious to you, but we really feel like we are wandering around in the dark. I have done so much research on the internet but it sometimes makes

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things worse! Do you believe her tumour slowed down due to the radiation?  I was also misdiagnosed for about 2 years. One morning I just collapsed and then started vomiting. I went to Doctors for months who told me that I was probably just stressed or had a middle ear infection. It was only when I stopped remembering my children's names and didn't know how to use a microwave (I would just stare blankly for 10 minutes) that they started to take me seriously.  I will speak to my neurologist on Friday and ask him about CyberKnife surgery. I have also been going for acupuncture and it has helped enormously with seizure control and almost completely stopped my headaches (although I don't know if there is any scientific approach to this)  I have gone through Sandy's website and needed more information because it seemed to just "stop" (her chapters that is) That was the part I was most interested in. Did Sandy start to feel different when her tumour had grown / changed to Grade 4? Did her seizures change? I suppose what I really want to know, is if surgery just prolongs the outcome with more symptoms or does it actually make things better. I would hate to be a burden on my family and for my children to have to see me in that state. (quite honestly I am not keen on surgery and if that is the case, definitely not) Saying all of that, I do actually believe that this can be healed. I want to make the best decision for all of us. I truly hope that you are ok and if these questions are hard for you, I really understand if you do not wish to talk about it. I know if this was happening to my husband, I would be devastated. (I hate being parted from him for a weekend!) Life is really hard. I was reading

Deir"e Kohler

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your article where you mentioned all the tragedies that you (and your friends) have had to deal with. I can relate to that so well. This whole situation really does make you focus on the important things in life.  I will get more information from the docs and see how we proceed. All the bestd:)

Dear Deirdre,I'm sorry for my bluntness or assuming you know more about all this. I forget sometimes that Sandy and I dealt with this for 7 years... so you tend to assume that everyone else is on the same page, has the same background. I think back to when she was first diagnosed and the panic / gathering knowledge / attack mode we entered into was overwhelming at times. So in a nutshell... The 6-week long conformally-delivered radiation treatments Sandy had in 1999 definitely stopped the growth of the tumor (grade II astrocytoma in the right occipital lobe - she had a stereotactic MRI-guided needle biopsy to determine the type). There was no change at all in the tumor size (about 4-5cm diameter) until the fall of 2005. She was getting MRI's every six months all those years. And every nerve-wracking MRI journey came up with good news until October 2005. And while I'm talking about MRI's -- insist on getting one at least every six months -- the doctors (read "insurance company") tried to talk her into once a year and she said no way.

So we believe the radiation definitely bought her some quality time - and in her case had no long-term side effects or damage. Surgery was not an option because of the location of tumor as it could have caused her to lose her vision and possibly other damage. The radiation was risky also, but less so. (And that is the advantage of

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the Cyberknife radiation I told you about -- generally less risky. But it depends on the location and size of the tumor.)  Sandy even regained her visual memory - lost in the years before diagnosis and radiation - where she could not remember how to drive home or where rooms were in our home.

Sandy had no symptoms leading up to her MRI in October '05, which showed that the tumor had grown substantially during the previous 6 months. We were of course shocked and devastated, but swung back into attack mode and sought out the best possible brain tumor center in the U.S. -- which is how we ended up at Stanford. You can read all about the surgery experience on the blog website (http://blog.sandybeardsley.com) in the archive links on the left side (October '05 and on)

Her first surgery in October '05 revealed what we had been warned about beforehand - that the tumor had changed to a grade 4 GBM (glioblastoma multiforme). They removed as much of the tumor as they could without risking damage, but the nature of these tumors when they become grade 4 is that there is no way to get all of it out. It's spreading too quickly and is actually not even completely visible to the surgeons (who are using MRI-guided computer imagery). We were told that a diagnosis of a grade 4 means that you have a year or less to live, by the statistics. There are exceptions, but they have no solid cure at the grade 4 level.

After the surgery, Sandy bounced back pretty well -- no perceivable deficits -- just fatigue from the recovery and the chemotherapy she started taking (Temodar).  So we held out hope for a miracle, but knowing that's exactly what it would take for her to live.

She did OK, with MRI's every two months showing no change since the surgery. But in May '06 her MRI showed a change, even though

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she had no symptoms. So we returned to Stanford for another surgery, this time knowing it was a last attempt to delay what we knew was inevitable. But we always held out hope. You have to. That second surgery bought her another 2 months -- long enough to make it to a big fund-raising event for the Lance Armstrong foundation on July 30, where we got the opportunity for a personal meeting with Lance (also on the blog).  She died a week later.

She was doing incredibly well, with few symptoms, up until about 3 weeks before she died. She never had another seizure even - only the first one in 1999 (she was on Dilantin and then Keppra [after the surgery] anti-seizure meds since '99) I believe it was will power and pride that kept her going. And also the location of the tumor not being in a critical function area of the brain. So for Sandy the two surgeries - scary and devastating as they were - bought her some quality time.

The location of your tumor may dictate another course of treatment - or just monitoring-  I don't know. Cyberknife may be an option.  But don't hesitate to travel far for other opinions or treatment. Stanford was a long two-day drive (or a 3-hour drive and 3-hour flight) for us. But it was worth it.  You have to find the best doctors out there -- they are not all the same (a local neurologist here mis-diagnosed her for almost a year, saying it was stress, etc also). Get copies of your MRI's / test results and send them to different neurologists and neurosurgeons for opinions. Frequent MRI's to monitor changes are the key.Some possible resources for you if you haven't already found them:   www.braintumor.org   and  laf.org

This has been an impossibly difficult time for me (I too could barely stand being away from her for a weekend, and we were rarely ever apart), but what keeps me going is gratitude for the 17 years that

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Sandy and I had together.  The gratitude outweighs the grief - not every day, but most days.

Please don't hesitate to ask me any questions, or if I can be of some assistance in any way, let me know. It heartens me to be of some small help to you.

Wishing you the best, and keep the faith....Dan

Hi Dan Thanks so much for this information! I will be speaking to my neurologist tomorrow and probably going for a scan next week. I am amazed that Sandy had no other symptoms, it seems bizarre. I showed Sandy's journal to my husband two nights ago. He read the whole thing (which is quite amazing). I could see that he was really moved and just left him to it. It actually opened the door for us to talk about it last night. We have both struggled to talk about how we feel / our fears etc. We are both such logical people so the conversations have been mostly around treatment options, how it works etc etc.  I know its not funny, but I had to laugh about the visual memory thing. I have always had a problem remembering names ... My husband used to tease me and say that there is something wrong with my oracle database retrieval system (I am a programmer) I could only remember the first letter, so street names, peoples names etc etc I would call you "Something with a C" Needless to say I got given the nickname "D" and that has stuck. It is so hard to be alone, before I met James I married really young. Even though we weren't good for each other and divorce was a real

Deir"e Kohler

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option, it is horrible to be lonely. I think it is the worst. People say you have your friends and family, but it is not the same. I am convinced we all need a mate.  And some of us are like swans and mate for life. I knew when I met James that he was the one for me.  James always says that I am so brave. I honestly think that it must be worse for him. I wander around completely lost when he goes away for work / sport. He once went for two weeks and it was awful, I was brave for the first week and the next I was morbid. (and angry with him for putting me through that) I feel for you Dan, getting through the nights is the hardest part. Even though you know you will be together again, its a really long wait. I will keep you informed with more news and about the cyberknife option. Thanks so much again for the helpd:)

Hello "D",  [I love that all too familiar story about your nickname]Just wanted to check in and see how you're doing. My apologies for not writing back sooner. I've been going through a tough time lately. I thank you for acknowledging "getting through the nights." That is the most difficult part of the day, of life, for me. Whoever said "time heals" must have been a geologist, because we don't have thousands of years to make this right. The more time that passes without Sandy by my side only intensifies the loss... and lengthens the time away from her. But I just try to keep breathing, keep moving, keep going. Because she's usually there to kick my butt if I don't.  I miss her so much... and just try to find a reason to get through each day... and some days I get a sign from her when I most need it. 

So I encourage you and James to not only pursue the "logical... and the treatment options" but also to get out there and live life. Don't

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let the medical side of this battle consume you. Sandy was so intent on continuing to live every moment, all we could do was just hang on for the ride.  Travel, dance, enjoy every small moment... and let everything else go. Forget work. We're not in this life to be just employed. Or to learn about all of our medical options. She was more than a school teacher... she taught me and our family and children and friends that you need to keep helping people, keep loving, keep laughing, keep dancing, and keep tending the garden.

So I strive to do that... some days better than others... while I wait to see her again...Please stay in touch and let me know if I can be of any assistance.Wishing you the best... and LiveStrong,Dan

Emails between Dan & I - April 2007

Hello Deirdre,Just checking in to see how you are doing. Despite my lack of communication -- I seem to cycle through periods of withdrawal where it's all I can do just to breathe and get through the day, and lately life has thrown me a bunch of curves that have been overwhelming in my current fragile state -- I still think about you and your family often. The similarities of your life and Sandy and mine make this seem like a small "universal" world indeed. The photos of you, James and the kids are beautiful. I hope that you are feeling alright and your diagnosis is good. Let me know.

Every night for the past year I have lit a candle on the nightstand next to our bed, thinking about and praying for Sandy and other people in my life before I try to go to sleep. Ever since hearing from

Deir"e Kohler

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you, you've been added to my short list, and thoughts and prayers have gone your way every night as I light the candle. That small flickering candle burns most of the night and is such a comfort to me, especially when I can't sleep too well. Even though we're thousands of miles away, just know that you are not alone on this scary road.

Live Strong.Wishing you the best,Dan

Deirdre,I'm so happy you wrote! Both of my ancient PCs (windows 98 running on a 1994 computer, and 2000 running on a 2000 computer) crashed and took everything with them almost - some kind of virus or spyware I guess. I was able to recover some files, but emails, addresses, etc were gone. So that was all the motivation I needed to take the leap and get a MAC. And I love it, wish I had made the switch years ago. The website hosting company also had some problems awhile back, but the sites are back up and running... sandybeardsley.com and the one I write on - blog.sandybeardsley.com.So thank you for writing back. But it sounds like things may not be going well for you? I think of you and your family often and still light a candle every night for those I pray for, you included. I have had some dark times lately, magnified by anniversaries like our wedding, Sandy's birthday and our first date anniversary. And now it is almost one year since she died on August 7. Time keeps ripping along and just wish it could slow down or stop.But I have been doing my best to honor Sandy's wishes and keep living... I bicycle a lot - 100 to 150 miles a week, and friends have been getting me out into the mountains here for some epic long day hikes into the incredibly beautiful North Cascades mountains just

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out my back door. Last saturday a friend and his 20-year old son and I hiked 18 miles roundtrip and 6,000 feet of climbing and 6,000 feet of descending to a place called the Enchantment Lakes -- an amazing and magical place of about 20 lakes ringed by high granite peaks (see the photos attached). I had not been there in a few years - the last time was with Sandy in 2001. These mountains are such a powerfully healing place. Maybe the photos will convey a little of that for you.Please let me know how you are doing and if I can be of any help at all.Take care,Dan

Email to Dan: 1 August 2007

Hi Dan

I am glad you wrote back too, I was wondering if you are ok and how things are going there. I can't believe it is almost a year since Sandy passed, because I can't believe how quickly the time has gone since we first started to correspond. Time seems to go so quickly and so slowly. James & I had our wedding anniversary on 3rd July. I was so happy about it. For the whole week I was on cloud 9. It is so funny!

This past weekend was a really tough one. I had my first grand mal seizure and was rushed to casualty. It was scary to say the least. My husband was a star and helped me the whole time. I just hate feeling so helpless and vulnerable. I have bronchitis which seemed to be the trigger to set my temperature to sky rocket. So all in all it created the "Perfect Storm" in my husband's words.

Deir"e Kohler

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The past few days I have felt weak and tired and just want to ignore the world. I have noticed I am struggling with short term memory especially after the weekend. I am not sure if this is as a result of the seizure or not. I think that suddenly it feels like it is "happening" to me. I have been ignoring it for so long. The problem is that I don't know what to do about it. This week I just had the overwhelming feeling that "it could happen to me" I am not infallible, I could die.

I hate the thought of leaving James and I hate the thought of him being with someone else (not that I think he would) I also feel bad that he could have found a wife that wouldn't have all these "issues" I know most of these thoughts are irrational. Unfortunately I am not being too rational at the moment.

My husband and I are making some changes in our lives. We are consolidating a bit and reducing our expenses to as minimum as we can get them. I want to travel and do things. To be honest, I don't feel that I can cope with my kids at the moment with every thing on the go. I would like a break but I feel terrible for saying that. The baby is very demanding and although he is cute he needs alot of my time. I am really fortunate to have a nanny. I don't know what I would do otherwise.

I am still working but also tired of it, it requires travelling (not the fun kind) and the stress is driving me nuts. In my life I am really blessed, I earn good money, I have a beautiful house and wonderful family and an incredible amount of freedom. I am thankful for what I have.

Were there times when you felt like getting away or that you couldn't cope? I don't mean that you wanted to leave, but rather needed a bit of space?

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Do you go out now or do you find you prefer your solitude? I have to wonder sometimes what I would prefer. I think the latter. A strange question... why did Sandy not change her surname to O'Connor?

I am also starting a blog site. I haven't written articles about what is going on in my life yet WRT the tumour, I am not ready. The intention was that there would be a nice record for my family and friends and that every year I could print a "year book" The site is http:// kohlers.lifelogger.com The main reason for using that address is because my cell phone uses the same software and uploads directly! I have got my own site which I may use for a blog... The inspiration did come from Sandy and you.

The photos you sent are amazing. The scenery is truly beautiful!! It is lovely to keep memories via photos...

Thanks for the catch up Warm regards and I am thinking of you d:)

Note : The first blog I set up crashed shortly after my surgery as the company hosting it shut down – without notice!

Email from Dan - 3 August 2007

Hello Deirdre,My heart goes out to you. I will never forget Sandy's first seizure (and as luck and blessings would turn out, her only seizure ever), one of the scariest moments of my life and the night our world shifted.

Deir"e Kohler

Pa# 46

On a brighter note, happy belated anniversary!

So much of the feelings you write about echo Sandy's... the fatigue, wanting to ignore the world (that's my role now), not wanting to deal with your children -- in your case so much more intense with a baby, though our high school-college kid wasn't exactly easy either. Sandy also felt guilt that I had gotten involved with a woman with "issues". But I always told her, even if I had known what was going to happen to her, I still would have fallen in love with her. I wouldn't have changed a thing, except her surviving.

Sandy also hated the thought of leaving me of course. But in the last months and days of her life she often told me, and even asked me to promise her, that I would keep on living and find love again. She told me that our love and what we had would not be changed or lessened if I loved someone else. I lied to her and promised I would love again. I can't even begin or would want to imagine the possibility. But I wanted to make her happy so I said I would. But that's how she was - always wanting to make others feel good before herself. So don't worry, James is probably like me, no need to love again when you've had something so wonderful and perfect.

Your thoughts are far from irrational. Like Sandy said, when you know, really know, that it could and probably will happen to you sooner than later -- there are no rules. Live life. Do what you want, when you want. She looked at it as a gift, a perspective on this life that all of us deep down want to live by. All we have is this moment, and what we have lived. Tomorrow doesn't exist for anyone. There's always a truck out there waiting to hit you. And when that seems much more like reality instead of a cliche, we've been given a gift. Sandy and I always said we didn't need that reminder, we already appreciated this life intensely owing to past experiences, but we got

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the kick in the butt anyway. Whoever said life isn't fair got it right. Life is just life and you better live it.

And it's obvious to me that you and James are doing that. So don't feel the least bit guilty about anything. You've been blessed with a good life - a wonderful husband, beautiful children, a nice home - I know none of that may seem important when you're fighting for your life, but that's what we have. It's not our jobs and all that -- Sandy cut back her teaching from 5 days a week to three right after she was diagnosed 7 years ago. As much as she love those kids, it was far more important to have more free time and reduce the stress. It probably kept her living longer. It sounds like you should try to cut back on work and work travel -- added stress is the last thing you need right now. And if your employer doesn't understand that, to hell with them. Quit and start traveling. I've been contemplating it myself. Life is too short -- and that's not a cliche, it's a fact.

You asked if I prefer solitude... YES! Even though I know it's probably good for me to be around people and get out, I don't. The only getting out I do is to walk down to the river near our home or hike the mountain trails. Friends try to get me out to concerts or dinner and such, but it's difficult to try to enjoy the things that Sandy I loved to do, and be around other people having fun and I'm there without her. So I stick to the mountains and our garden where we had a lot of special times together. In solitude I find I'm closer to her. As much as I love friends and family, they can be a real draining distraction sometimes if I'm around them too long.

And you asked why Sandy kept her maiden name... she changed her last name in her first marriage so her son has the last name of a guy she later didn't like at all, so she swore never to change her name

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again. I never would have asked her to change it anyway. We always joked that we had 3 people and 3 last names in our household. Kept the mail lady confused.

So are you getting any treatment now? Regular MRI's? Anti-seizure meds, etc? You wrote awhile back that they thought it might not even be a malignant tumor? I know it's difficult with the shock of it all, but you need to take control of your treatment options. Most doctors are just too busy to track individual's options. We learned that the hard way. So don't give up pursuing treatment, even though the search for knowledge is a daunting task. But also don't give up on just living life. Sorry if I sound like I'm giving advice, I don't mean too.

One of Sandy's favorite lines to live by was "Count your blessings, not your troubles." I try to do that when I come home to an empty house (save for two dogs and a cat).. I just try to remember how blessed I am to have shared this place with her and that I'm still here to walk in the garden and watch the light change on the mountains and watch the water keep flowing down the river...

Thinking of you and wishing you peace...Dan

Email to Dan 6 August 2007

Hey Dan

I really enjoy these emails. It is an "anonymous" way of letting go of some feelings. I have really taken it easy over the past week. It has been great, but the work does catch up. I am taking Thursday and

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Friday this week off so that the kids and I can enjoy a long weekend. Obviously this all affects my income (I am a contractor and get paid (well) per hour) But I have been thinking "to hell with it" I want to enjoy my days a bit.

James & I have bought a beautiful piece of land just out of town. We are wanting to build a wellness centre / spa on the one plot overlooking the lake. We are also looking into buying vines & olive trees and doing something on a small scale. I am craving the freedom to decide where my days will lead me. If we sell our house, we will make a really good profit and could basically build a new place for "free" and still have a bit of cash to invest. This means I would not have to work. Well this is the theory anyway. If James could have more free time, it would be great too.

I must be honest, last week was the first time I felt "scared" I felt vulnerable and didn't want to face the issue. I still don't want to.

I am lucky to have James, as Sandy was to have you. It makes me feel better to know how you feel about her. I also feel for you because I sometimes wonder if I could cope if the shoe was on the other foot.

What was life like in the last few months? Did you only know that the tumour had progressed because of the scan or did her symptoms change? Sometimes it feels like we just wait for scans. They seem quite unreal.

What work do you do? Do you regret not having your own kids?

Well let me know how you are doing...Chat soon

Deir"e Kohler

Pa# 50

Email from Dan - 18 August 2007

Hello D,Apologies, again, for not being the best email person. Have had a rough time lately with the passing of one year since Sandy died. I thought I would get through it stronger, and I did ok until it was one year and a day, and then the calendar starts clicking again toward another painful anniversary. Then the wave hit me.... again.  A lot of rough sleepless nights lately and bleary days, but am starting to rebound a bit. 

Sandy's brother and I had planned a long motorcycle trip to Canada this weekend but a big fall-like storm with cold and rain was rolling in so we postponed it until next weekend. Am looking forward to a bit of adventure, scary adventure really, since I've only been riding a motorcycle for three months now. But I think it was Eleanor Roosevelt who said "Do something everyday that scares you."  Well, I don't have it in me to do that everyday... though a lot of days just getting out of bed seems scary, so maybe that counts?

You asked a few questions that I don't think I answered last time.... Yes, the waiting for scans is so very unreal... we dealt with that every six months for six years. They never got easier, and seemed more surreal each time. 

And no, Sandy did not have any symptoms prior to the MRI in October 2005 which showed the tumor had suddenly changed after 6 years. Though I have wondered if she had felt a change but did not want to worry me by expressing it. I don't think so, though. She was always very open and honest about things and I think she would have told me if she was worried about a change happening. So the

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MRI was a huge shock, though they had always told us with her type of tumor that it would come back someday. So we were not totally surprised.  The reason she did not have any symptoms was due to where the tumor was -- in the occipital and perrietal lobe - so not a critical function part of the brain. I can't remember if you told me where yours is...?  So symptoms of course all depend on where the tumor is. 

As a blessing, it was only in the last month of her life, even after two surgeries, that she had any symptoms -- and they were relatively minor visual / muscular problems, nothing cognitive at all. She began to lose peripheral vision in her left eye, and muscle control/strength in her left leg, so she used a cane. This was because the tumor was on the right side of her brain -- everything is opposite as far as control. It was only in the last week of her life that she was in a wheelchair and then bed. She was incredibly strong through it all, knowing the end was coming and wanting to go out on her terms. And she did.  Probably due in part to the medications she was on and her will-power, she never had a seizure. The last 2 or 3 days of her life she was in a coma-like state, but would respond to us with a faint smile or a stronger grip of the hand. I know she was with us right to the end and could hear everything we said to her. 

You asked what work I do...  I'm a Graphic Designer, both as a day job for the Forest Service (a U.S. government agency) where I design publications, websites, interpretive signs, maps, posters, etc for National Forests and Wilderness Areas. And I also do graphic design out of my home office for local businesses, though I have tried to scale back on the work I take in, my regular customers keep me busy enough. Which lately has been a mixed blessing... good to stay busy but my heart isn't really into it all the time anymore. 

Deir"e Kohler

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And you asked if I regret that Sandy and I did not have any kids of our own. We thought about it early on but I think the challenges her son was already giving us (and continues to give me today) made us both say "one is enough."  So no regrets... but once in awhile a little pang of what if... until my 24-year old stepson calls up with another problem. And then, definitely no regrets, one is enough for me. 

Your wellness centre / spa idea sounds great. If you want my advice, I say go for it. A beautiful place and the financial means to pursue a dream like that... sounds perfect. Just do it. Something like that would be so rewarding on so many levels -- and fun too. Let me know when you need help designing a logo for it.  

I enjoy hearing from you, so let me know how you are doing -- how you are feeling -- are you having symptoms besides the seizures? Are you getting any treatment? I have tears in my eyes trying to type this, knowing that you are as scared as Sandy and I were... but all any of us have is today... so keep living strong, hug those kids... and go after those dreams...  

Dan

By the end of August 2007, we were in Paris, France. I arrived in James’ office 2 weeks before that and just burst into tears. My short term memory was bad and I had no desire whatsoever to work. I would spend time staring blankly at the wall. I had no energy, motivation or will power. I had my first grand-mal seizure. My seizure had rattled me (and my family). The seizure was about 5 minutes long and happened at about 9am. James took about 30 minutes to wake me. My brother and James took me to the hospital where I stayed for a couple of hours. I kept asking for my lipstick. The men couldn’t

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understand why I would possibly want to “look good”. Actually I had such dry lips that I just wanted some moisturiser. It is an odd request I must admit. I have the excuse that “I wasn’t thinking straight” When I looked in the mirror I saw that my eyes were bloodshot and I had bitten my lip and tongue. Generally my entire body was sore. It felt like I had been driven over by a train. I said to him “I want to go to France” his reply – well, book it. I was, of course, worried about how we would pay for it. 2 weeks later we received a small payout from my insurance company.

I have always believed that God provides. It was the best thing I could have done. James and I rested, explored and we were alone. When we had arrived in Paris, James had had lines under his eyes so black that he looked like a racoon. As the weeks progressed they started to lighten and you could actually see bruising.

Deir"e Kohler

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Chapter 4

Brutal Honesty

Email to a doctor for more information – February 2008:

Hi Dr Nadvi

My name is Deirdre Kohler. Ian gave me your card and said that you mentioned I should email you. He met you at a seminar you conducted in Durban. I would like to chat to you to get another opinion on my tumour.

I am looking for some BRUTAL honesty. I would like to know the worst case scenario in your opinion. I understand that every case is individual. I would like medians, averages and proposed next steps. James (my husband) and I have been wandering around in the dark land of vagueness.  We would like to make some serious decisions in our life regarding life style, work, children, medication and treatment.

We are prepared to pay for a consultation. I do prefer email as it allows me to put down all my questions in some form of structure. We can arrange for scans to be couriered if necessary.  I have listed

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a lot of questions below and understand that you will probably not be able to answer all of them. But its worth a try

About me (probably too much info here)I am 32 years oldFemale (according to my husband) Weigh 47kgWork as a project managerHave 3 children 2 natural one C section Allergic to MANY things! (YAY)Useless at sport & don’t exercise much(for what its worth)Low blood pressureFamily history of migrane headaches which I suffer from too

About the tumourI have been diagnosed with a low grade glioma in June 2006. We have not had a biopsy done so we are not sure of the type of tumour. The options I have been given are astrocytoma, dnet, oglioglioma Since I was diagnosed, the tumour seems to be growing at a rate of 1cm per annum.Currently the size is 6x5x4It is situated in the temporal lobe. It does touch the optic channel (I think this is the name)It seems to be moving towards my speech area

SeizuresI had strange symptoms for a few years which involved dizzy spells, battling to see, speech problems, confusion and falling.During and after the birth of our son, I noticed what I now know to be seizures. I eventually went for an MRI and received the diagnosis

Deir"e Kohler

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My seizures are usually in this form:Battle to see properly, vision seems to swop.Seem to want to eat (don’t know if I subconsciously thought this was due to low blood sugar.) I didn’t know what was food or not so I would eat anything (airfreshner, id book etc) I didn’t know how to put keys in the door or maybe what keys are.I understand what people are saying but I cannot answer / put make up a cognitive sentence / know the words to useHeadacheTirednessNeed to lay down just feel a bit woozy They last about 10 minutes I have had one grand mal seizure in August last year. It lasted for 5 – 6 minutes, it took about 30min for me to recover. I battled for a week to think clearly after that.Most times I have simple complex or partial complex seizures. I am not sure how often I have them. I assume that I have about 1 – 2 times per week ??

Besides the grand mal, the seizures are milder than I had before medication.

I find that when I have lactulose I seem to have some form of seizure. I don’t know how relevant this is but it bothers me.

Medication

I am on EPITEC 300mg daily. I was taking it once per day, but, I was told yesterday  I should probably take it twice per day.I do get constipatedI feel sick when I take them. I tried topomax but it made me horribly sick.

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I don’t take any other medication other than the occasional headache tablet and herbal supplements

Treatment

I have not undergone treatment. We need to knowShould I go on treatmentWhen should I goIs surgery an option that will STOP or SLOW DOWN tumour growth AND improve quality of life? I have been told that I would not be able to have a total resection. I have also heard that surgery will not alter the end outcome of the tumour growth.Will I have to have my head shaved? (I am sure most women ask this – I hear in USA they don’t)I hear that they can put radiation “bullets” post surgery into the tumour location?Could I have a treatment like Gamma / Cyber Knife or the therapies that involve targeted radiation rather than medication or conventional surgeryIs radiation a good option? What are the side effects of radiation?What alternative therapies are there? Oxygen? EtcHow long will it take me to get back to normal after treatment?What are the risks or surgery & radiationI am not keen on conventional surgeryCan you suggest some vitamins, supplements etc that will assist

Questions

I am needing some real opinions, answers, stats, studies. As I said give me the worst so that I can deal with it and aim for the best case.

Deir"e Kohler

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Is what I have been diagnosed with, for all intents and purposes, called cancer?What is the average life expectancy in yearsHow does one actually die (do you just stop functioning??) Does the process usually take long?Will my day to day cognitive ability just continue to decrease as the tumour grows or will the seizures just increase.What size of tumour makes it significant? Mine is relatively large as I understand it, what is a “dangerous” sizeIs it necessary to see an oncologist?Should I be sleeping more or stop doing what I am doing if I am tired.What will the long term (ie the life expectancy) effect be on my ability to work.Anything else??

Thanks I think that is all – for now!

Have a good weekend and I hope to chat to you soon.

Kind regardsDeirdre Kohler

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Reply from Dr NadviHi DeirdreLots of Questions! It's best that I see the scans, can e-mail the relevant pics ie contrasted MRI scans to me at least.To answer questions directly, in order that you asked them 1. Brain tumours are graded 1 to 4, where grade 1 and 2 are benign, and 3 and 4 are malignant or cancerous. We do not know what grade your tumour is, but probably low grade ie benign.2. grade 1 is 10 years with treatment ie surgery radiotherapy etc, and grade 4 is 1 year, but that is only for gliomas, others eg DNETs can have a virtual normal life expectancy, with treatment. Again we do not know what tumour you have!3. coma, eventually4. not once you are in coma.5. both, but seizures can be controlled with drugs.6. no particular size, it depends on exact location.7. definitely, but only after we know histology8. yes, just listen to your body.9. depends on tumour histology, and outcome after surgery10. as you can see , many Qs not answerable by anyone until histology is obtained, ie surgery to biopsy and debulk, and  then to decide on radiotherapy etc. Best is to see a good Neurosurgeon, and plan further treatment, but little point in doing nothing and waiting for the inevitable.Sorry, you did want brutal honesty. Again best to see a neurosurgeon that you trust, because the internet can be misleading . Give my regards to Ian.

Deir"e Kohler

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The death word. Scary. I didn’t believe it of course. I am not sure whether I was just a slow learner or in denial. In my heart I believed I would be alright. I knew we had to be serious now. We started to investigate having a biopsy. I am not sure why I thought that would be better. I think it was a combination of possible complications, having my head shaved and hoping there were other options. We couldn’t think of any, I looked into gamma knife but was told my tumour was too large. I had a project to finish and I tried to wipe it out of my mind. I was researching going to Egypt. I have realised that I need to ‘get out’ and think when I am stressed. (You could call it running away if you were to be technical)

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Deir"e Kohler

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Chapter 5

Early 2008

By January 2008, I was off for another scan. Once again my tumour had been growing. Bad news. I had just been offered another contract at work, which was really lucrative. What a hard decision it was. The doctors still felt that it was low grade but it was getting far too large and I should go for surgery. I was too scared. I worried that people wouldn’t like me because I was sick or they would think that I was incompetent. We needed the money, I decided to take the job – with hindsight it wasn’t a good idea. But, as you know, hindsight is a terrible thing. The job involved a lot of pressure which meant that I was getting stressed quite easily. I was traveling and attending long, boring and generally non progressive meetings. I did give it my all as I am prone to but I should have rather gone with the flow. I noticed that traveling in an airplane became difficult. I was scared to be in another city, I was scared to drive, I was scared I would have a seizure. Often I would have someone join me on my travels, my mom or a colleague. The one advantage of the travel was

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that I got to spend time alone. I had time to eat, sleep and think.

Email to Dan– 15 January 2008 Hi Dan

I hope that you are doing alright and had a great festive season! I had news that my tumour is growing and I will need to have surgery towards the end of the year. I wanted to ask you if Sandy had to have her head shaved? Thinking of youD:)

Email reply from Dan – 17 January 2008

Hello Deirdre,I have been meaning to write you for the longest time. Been going through a dark time and have been quite withdrawn from everyone and the world in general. Hope has been hard to come by and I barely have the energy to drag myself to work, feed the dogs and then feed myself. But the holidays are past thank God, and the days are getting longer... this time of year here the sun comes up over the mountains at 9 am and disappears over the mountains at 3 pm.... short days and very long cold nights (4 F this morning). There's 4 feet of snow outside my house right now and where the snow has slid off the roof and piled up is 7 feet deep and I can barely see out the windows... we're buried. But I love it, being a skier. Though the shoveling has gotten to be a full-time job. But it has kept me moving, along with chopping wood for the stove.

Deir"e Kohler

Pa# 64

I am saddened to hear this news from you. And am wondering why they are not doing surgery until the end of the year? What type have they diagnosed you with? Did you have a biopsy? When Sandy was told she had to have surgery, we were packing our bags.

As for the head shaving... Sandy was at first mad that she wouldn't have her whole head shaved -- in her sick sense of humor way, she thought it would be another great badge of honor like when she lost her hair during radiation. But they only had to shave where the incision was going to be, not her whole head. So she actually was quite happy about that... both times she had surgery. And she was also happy that they did a good job with the shaving and went underneath her longer hair so that it almost hid the surgery site. It probably depends on where your tumor is though. But that's the least of your worries obviously... I'm sure they will strive to give you a good hairdo!

Please let me know any details you wish to share. Maybe I can help with knowledge/resources we gathered. In the meantime, Live Strong.

Also thinking of you,Dan O

Email to Dan – 9 March 2008

Hi again Dan How are you doing. I am thinking of you often because a lot of what you feeling we are going through. I wonder how you must be feeling and if you are slowly feeling more at peace or happier. I find it interesting to see it “from their side”

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I love James so much and sometimes the thought of all of this is too much for me. I really struggle with the thought of being replaced or my children (especially Leo) not knowing me or just remembering me sick. I do struggle to think that James will be with someone else (even though he says he won’t / cant) Realistically he would be young and would need someone. It is my belief that we have soul mates in life and at some point we are together again. I feel like this would be challenged if life is shared with another (stupid I know) I am also scared that there is nothing (which I don’t believe but its hard not to think about it) We have started to go to counselling to try cope with the issues We are both going through a very morbid time at the moment. With the growth, we have had to look at some real issues and “what ifs” The doc says that my tumour is still slow growing. The problem is that it is quite large. 6 x 5 x 4 cm and seems to be growing towards my speech cognitive area. They want me to look at some form of treatment to assist, but the area that is affected is really tricky. I notice a few things wrong with me now and then, especially around words, spelling and explaining myself. I am sure that I am being a bit paranoid. I can’t pretend that it doesn’t bother me! I am going to go for a biopsy soon and need to decide what treatment will suit us best. It is strange that, after a year and a half, I am feel really anxious now. A couple of weeks ago the doctor gave me too much medication and I overdosed. For 4 days I couldn’t see properly or walk or even think or speak. I went back to my dosage and am fine now. The doctor gave me a direct talk about what could happen and discussed the averages. This is scary but I am glad I know. It was the first time he was really straight with me. I would need to set things

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in place now with the hope that nothing will happen. Being given a time frame is really freaky. In the meantime we are planning a trip to Egypt (somewhere I have always wanted to go to) and 2 nights in Dubai. James is really keen to see the new buildings going up there. We need to get away from kids and business and just spend some time with each other. We actually just want to be together and don’t need to be with anyone else. I love my kids dearly, but sometimes I just want James. I suppose I am a romantic at heart. My painting is going well and otherwise business is good. We have a great lifestyle. Crime is the biggest problem here. James is going to sell his properties (except our house) in case the rand devalues. We will also plan for the time when I might not work. The issue is not just me, but the concern that James will have to take care of me and this will affect his work too. I don’t want to think negatively. I just need to face that something may go wrong and that is really hard. I don’t quite know how to have a balance between the two. What happened with Sandy in her last few months? I am so worried that I will be sick most of the time and bed ridden. I don’t want my family to see me like that. Dan, if you don’t want to talk about it, I understand. I don’t want to bring up painful memories for you unnecessarily. Let me know what is happening around you. I need to update my blog. I don’t discuss my illness because I want it to be a place of fun. When I am ready I will put something up.

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Email reply from Dan 14 March 2008

Hello DeirdreThanks for writing, despite my lack thereof. Been feeling quite withdrawn and reclusive, and thought about getting counselling myself but just the thought of that scares me somehow.

This "other side" hasn't gotten any easier or more peaceful, but I guess I've gotten stronger in coping with it. At least until someone says to me, "So are you dating yet?" And as I hold my breath, bite my tongue and resist the urge to scream... I just have to realize that most people don't get it. Sadly, even some people I thought we were close to.

So I think I told you this before, but several times during Sandy's last year of life she told me, "I want you to love again. Being with someone else will not take away from what we had... Promise me you'll love again." So I lied to her and said I would. And as time goes on, I know for certain that once you've found your soulmate, that's it. The thought of someone "replacing" her never enters my head or my heart. So I apologize to her for saying I would love again. But I know she understands. So don't let that fear of being "replaced" enter your thoughts and drain your energy. You and James are soulmates, and nothing will ever change that.

So revel in this moment and don't be scared that there is nothing after this. Because I'm certain there's more than "this life". I don't subscribe to any religion but have had enough "spiritual" experiences, signs and communication from the three people I've been closest to who have died - my dad, a best friend, and Sandy - to know that there is definitely not "nothing" out there...

Deir"e Kohler

Pa# 68

It sounds like you have gotten past the "Oh Shit" phase as Sandy called it and are entering the real fight and awareness... all the freaky scary stuff that somehow has become "normal" stuff you have to deal with every day. Your words ring very true for me, needless to say.

I can't help but say that it doesn't sound like you are getting the best medical care / advice there. Maybe with the politics / economy in SA (which I've been hearing about on our national public radio), and more importantly your health, you should bail out and go somewhere with better medical care available - the UK or maybe San Francisco which is the best brain tumor treatment area in the US. Don't waste time -- the type of tumor you have may well be curable, given the right doctors and technology. I know it's easy for me to just say pack up and go. Life is never that simple. But why not give yourself and James and the kids your best shot at survival. Like Sandy always said, "I'd rather be doing something and fighting than waiting around for something to happen..." She learned very quickly that you have to take your medical care into your own hands and demand / seek out the best. Doctors are just too damn overbooked to give everyone the attention they need.

And never feel guilty about wanting to spend time alone with James, instead of the kids. Sandy and I were the same. Our love was more important. The kids will be OK. You aren't thinking negatively -- it's being pragmatic and realistic. What's truly important gets narrowed down in a hurry... and you have to honor that and roll with it. Today is all we have.

You asked about Sandy's last months. We were blessed that Sandy didn't suffer or even show any major symptoms until the last month

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of her life (the surgeries and chemo drugs had more affect and made her sick sometimes). Even then, because the tumor was in the occipital lobe, only her vision was affected. In the last two weeks, the muscle control on the left side of her body became affected, but she wasn't bed-ridden until the last week, right after the LiveStrong Challenge. And even then she was aware of what was going on. Sheer strength of will kept her going. She did it on her own terms. So I don't mind talking about it most of the time -- she will always amaze and inspire me.

You said your painting is going well -- I'd love to see your work. Keep that going, it's great therapy. Sandy's creative endeavors live on -- sculptures, collages, and art all over our home and yard -- and that also amazes me and makes me smile...

Love and take care,Dan

I started to take my painting a lot more seriously. It was a great way to express my emotions. It was a release. I didn’t read too much into the meaning – but looking back I think it they were all relevant. James dragged me to a gallery to show my work. The gallery owner loved it. She insisted that I exhibit. She told me she needed about 20 paintings. Wow. I had never painted before my diagnosis. I always felt better in the evening. We said yes, and we booked it for July.

My friend came from Germany for a visit in May. It was also James’ birthday. I was tired but I had been tired for years. The progression was slow so I considered it normal. I was getting paler. I would find that my mouth would get really dry and my

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lips would turn blue easily. Life was busy. The children were at school with different schedules. I had a job to do.

In July Anastasia, my daughter, had a function about an hour out of town on a game farm. I wasn’t feeling good. I felt though that I had to support her and we went at the last minute. I was offered to go on a game drive but declined. (We do of course live in SA and see a lot of animals) I had a bad headache. The next morning, at breakfast, it was bad. My father came and asked how I was, I replied “Nothing a few drugs won’t cure!” By the time we were leaving I said to James that I really didn’t feel well. We had an hour’s drive to get back into town. James had to drive carefully because the bumps were not helping the situation! When we arrived at home, James said that he needed to pop into the office for a bit. I just looked at him and answered “I have to go to hospital now” He could see that I was not joking. By the time we got to the hospital, I was crying and vomiting from the pain. The neurosurgeon on duty admitted me to hospital and put me on a course of cortisones. I was then given a frank talk telling me that I had run out of options and would have to have surgery. My life depended on it. In the meantime I had to wait for the neurosurgeon to come back from holiday which meant I had to wait for a month! By this stage, I was desperate to have surgery and worried that I wouldn’t have it in time. I ended up in casualty about 2 weeks later again and so they increased my dosage of cortisone. Most of the time I spent in bed playing on my laptop, reading or painting. I didn’t often get up.

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Email from Dan – 31 July 2008

Hello D,I figured this day was coming too, but hoped it would not. Having been along side Sandy for her two surgeries, I know all too well the intense surreal stress and anxiety you and James are going through. Those pre and post surgery days in the hospital have been replaying through my head since I read your email.

All I can offer is to keep fighting -- Sandy actually felt some relief and got into a warrior mode when she was told surgery was the only option. She felt like it was at least doing something - fighting the tumor - instead of the insufferable waiting game, which for her went on for almost 7 years.

And I know it's easy to say, for a guy, but don't worry about your hair. Sandy was a bit worried too, but she didn't try to hide it under a hat or scarf (unless we were at a restaurant and she thought it might ruin someone's appetite). She actually didn't mind showing it off as a battle scar. But her hair grew back very quickly anyway, so she couldn't show off the scar for very long.

I would love to see your artwork somehow. Any photos? And I'll look forward to meeting you someday when you come to the U.S. Here's a couple photos I took two days ago on a motorcycle ride to a place nearby I could show you.... still buried in snow in mid-summer...

I will keep you in my thoughts and prayers as always, and light a couple of extra candles at night in the weeks ahead...

Love and take care, Dan O

Deir"e Kohler

Pa# 72

Chapter 6

Brain surgery August 2008

3 difficult days

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me;

Message left by James after the first and second operation

Deirdre went in for surgery on Friday. The whole of Friday night, she was vomiting and slipping in and out of consciousness. It doesn’t look good. I stayed there till 2am till the nurses kicked me out. At about 3am Deirdre managed to push her speed dial on her cell and called me. She couldn’t speak but was crying and vomiting. Her father went to see her at 5am and by then she had deteriorated quite badly. Her doctor and I arrived at about 7am. He started performing speech tests on her. She could only say 2 out of 5 basic things (nose, finger etc) She just waved us off and went back to sleep. We couldn’t wake her up again and she cannot recall the next events. She was sent to have an x-ray and they saw that the grid was irritating her brain as the pressure was too great. The doctor gave me two choices. He said that if he left the grid in place, she

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could have a stroke or be paralysed or even die. If we took the grid out she might loose her speech because the last surgery would have to be “awake” surgery because they hadn’t had time to map her speech area. The risks of paralysis or death still existed, if they took out the grid, but are substantially less. For me, looking at Deirdre in the state she was, I didn’t even hesitate to tell them to take the grid out. The surgeon did an emergency operation and removed the grid. She recovered well. She cannot recall the weekend. She was moved to a private ward. She was very glad to wake up to her own room. She had to stay on a drip and catheter as she was very weak. She has to wait till Tuesday when they will perform the final surgery to remove the tumour. The doctors will wake her up and talk to her during the surgery to try and avoid the speech area. She is building up strength and has been talking. She even took a very short walk to the next ward. Lights hurt her eyes and she battles to watch more than ten minutes of TV or computer. She is keen to let everyone know she is ok and she will get on the PC soon to read comments and write a bit.

I can’t remember much of the days before I had my 3rd surgery. I know that I was left on a bed with just the hospital gown. I was freezing. We had given the camera to the doctor and asked if he could take photos or do a video. He obliged us – but only if he had the time. He didn’t get very far. There is a video of them shaving my head and starting the removal of the scull. I woke up at sometime in the evening and only remember vomiting. I remember nurses looking at me and holding a bucket for me. I don’t remember being in High Care or ICU. I have faint memories of having someone attach wires to me. After hours of vomiting (which I was told was normal) I called James. I could hardly see and couldn’t speak but I had him on speed dial. It was 3am and little did I know that he had

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already been kicked out as he had been waiting with me till 2am. By 7am when the doctors came around for their check up, I could hardly speak. The doctors kept asking me questions and to name parts of my face and hand. I just remember being totally annoyed that they were asking me stupid questions. My father was there and I saw that his face looked really concerned. I felt like saying “Its ok” but all I could do was go back to sleep. The rest is blank.

When I woke up again it was Sunday. I was in a private room. I could feel myself being wheeled along and myself staring at the ceiling. I lifted my head and noticed that there were no wires attached to my head. For the first time, in a week my head was “free”. (Besides the big headband - of course!) James told me that the other operation hadn’t gone well and they had had to remove the grid. It hurt, but not as much as I thought it would. I had to sleep pretty high up so that the blood didn’t rush to my head. Turning was really difficult because everything felt bruised and my head felt heavy. I couldn’t lift the bed to alter the levels so I kept having to ask James to hoist me

I was attached to a catheter. Not my favourite thing. At least I didn’t have to try to get up to go to the toilet. (which I suppose is the point)I was told I had to go for a walk. Seriously, it was obvious that none of the people who told me that had had brain surgery. I wheeled myself down the passage and managed to do about 50m. That probably took about 20 minutes. When I got back into bed I was exhausted. I couldn’t watch TV, listen to music or stay awake. I also hadn’t

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had any near death experiences which confused me a little. I was expecting to feel “spiritual” considering all I had gone through. I was very disappointed.

Before the 3rd and final operation, I asked James to pray for me out loud. He sat next to me holding my hand and prayed aloud for the first time in his life. It was very emotional and we both cried. His prayer reassured and worried me. It was encouraging because I knew that James had faith but the prayer did feel like I was on my death bed. I know that we believe in God and he is part of our lives even if we don’t always feel comfortable to talk about our relationship with him.

Deir"e Kohler

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Chapter 7

Let us pray

My Mom (Lynn Page) was with me every minute during my surgeries. She is a business woman, mother, grandmother and a friend to many! She seems to be a local legend around these parts! She didn’t know how she could help me, but she did none-the-less. During each of my surgeries she went to the hospital chapel and prayed… for hours. My mom has been through hard times and I felt guilty for putting her through this. My sister (Jackie) had passed away when she was 25 from flu symptoms that lead to heart failure. So of course my parents were both very distressed by my condition.

She organised the apartment where she, my father and James stayed while I was in hospital. At least I know that my husband was fed! Sometimes we take our mothers for granted, not because it is our intention, but rather that things go smoothly so we didn’t know that there was anything to do! Well I think that I am a bit like that.

She has made my life better. Carried, encouraged, supported, helped and loved me. I don’t think there is much I can do for her that will match it.

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There have been many people who have prayed for me and I am so incredible honoured. My Grandparents – Frank & Auriol McMahon have initiated so many prayers and prayer groups. They have been a role model in their lives, their love and their accomplishments. Their faith is strong and their hearts follow suit. They would pray everyday – as they do – I know I was high on the list.

But my mom, she was on her knees …

A message on my blog from Julie Holden Jones to my mom (Lynn Page)

Lynn please carry this in your heart today, share it with Dee (a little later) and James and those around you :

Isaiah 41:10 (New International Version)

10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Email from Lynn responding to this page: 23 February 2010

What can I say – the people that supported both of us were Joan and Alan Keeling and Winks Smith and her prayer group and Gran, Grandad of course. Joan had the whole PE intercessors group

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praying and Winks and team prayed very specifically for you every Wednesday.I would love you to mention them.June and John Wright were also my counselors so I certainly didn’t walk alone.You forgot to mention what an exceptional daughter I have who made this walk a 1000 times easier.

It is very moving, Dee and I think you are right. It had to be written…Lots loveMom

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Chapter 8

A time to blog

Through many dangers, toils and snaresI have already come;'Tis Grace that brought me safe thus farand Grace will lead me home.

I was out of surgery and felt great (besides the pain) What I remember from coming out of the 3rd operation, was that the nurses were shouting “Mrs Kohler, Mrs Kohler” and tapping me on the shoulder. I was so irritated because I hate being tapped and I was having a nice nap for the first time in days!! I was amazed that I felt so “normal”. I was talking and fully conscious. I felt like as if a weight had been lifted off my head. I asked my Mom to take a photo. When the cell phone was not working properly I even managed to fix it. I had iv’s all over and a big drain coming from above my ear. I had an IV in my jugular which scared the life out of me. One of the IV’s fell off and blood was squirting onto the bed. I just felt this warm liquid oozing across the bed. At this stage James had to escort my friend out of the ward as we could see she was going to pass out.

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I needed my computer so that I could connect and express my experience. I became obsessed and what would ‘get me up’ was knowing that I could get online and see what people were saying to me.

Blog Entry : Quick catch up 26 August 2008 The past few days I felt very weak and cold. I have never been a fast walker but this is going to another level!! (seriously need exercise) They say I have to walk to keep my blood flowing. Really – does it HAVE to be so soon. I have to lie in bed. Sleep is difficult. High Care they check on you every 30min – 1hr. Now we had to wait for the diagnosis. We asked the doctor how much he had removed and said that it seemed to be the size of a small egg. I asked if I could have a piece of the tumour (curious me) and the doctor just laughed because (he said) “it has been sucked down a microscopic tube”. I was also waiting for the MRI to see how much of my brain is left!

Blog Entry : Boys will be boys 27 August 2008

The one “highlight” I get when in High Care is to be bed bathed (lucky that’s over)… I feel so mature. Now if they used products that are a less bright pink and jik like, they would be half way there. I suppose I could imagine that the hundreds of needles are actually an acupuncture treatment (this would be stretching my brain – you know the head jokes are going to happen)Well I cried with laughter because a guy - Jason (also 32 who for brain operation who come in after me op) had a male nurse washing him. It caught him by surprised! Well when the nurse told him he would be shaving him too, he started to get really worried and his voice changed 2 octaves. I couldn't keep quiet and I suggested that

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he do a Brazilian to make a fresh start. The male nurse, playing around, said that he could do it. I mentioned that he would be able to run faster during recovery.  Well we all started laughing really loudly. Then another nurse said we shouldn’t be making a noise in the ward, but that rule only applies to other patients to protect the brain surgery patients!!When I say boys will be boys, it applies in all circumstances. The Jason is very protective of his family jewels. He had just had brain surgery ( I would rate this in the top extreme operations) and he wanted the catheter out in case it damages those assets!! How he was planing to rush to the loo was a mystery to all of us.  Even James got a little quezy when they spoke about a catheter and inched lower. All I can say is that goodness men don’t have to go through childbirth…

Blog Entry : How hot am I? – 27 August 2008

Being here is not very fashionably. My body is looking a bit different!!Hair gone, (although they gave it back in a packet)A sporty scarThe opening of the scull has left big bruises on my side and one eye I have a strong suspicion that I am going to need to work on my butt musclesI have needle bruises from both hands around my neck and back again. The needle in the neck is very disturbing.My fashion sense is non existent.Globs of brown sticky bandage Plus people ask you very undignified questions.

Deir"e Kohler

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Ok having my brain chiselled hasn’t been a highlight in my life. Supposedly there is less physical pain because your brain doesn’t have pain nerves.. MMMHHHThe worst part for me was vomiting, really I can’t stomach that…1. Believe me or not, I am actually not worried about that… I want

to get better and feel like an adult human again. I completely sympathise with babies. (my friend found this hilarious – who sympathises with babies?)

When I lay in bed alone, I wondered how God fitted into all of this. I just don’t seem to be getting any answers. I don’t feel all “religious”. I hadn’t gone through some marvellous tunnel. No flashing lights. It made me worry about what’s “OUT THERE”. I had an argument with God “If you are so wonderful and powerful why don’t I feel you?” I was scared to get an answer and angry I didn’t get one. I hate the fact that I just have to lay in my bed. All I can do is think. I don’t want to pray – I wanted to fight. If I had a life lesson to learn – SURELY it could have been a bit easier. I sometimes think that others are getting more out of my sacrifice. Selfish, I know.

I was flooded with calls, flowers, sms’s, visits, emails etc. I was so surprised by it. It made me feel very loved, yet undeserving. Everyone was saying I was strong. I didn’t feel strong. I felt like everyone was carrying me forward. My family had been the strong ones. I was just lying there. There were so many people praying you there must be something. I realised that I had been given peace and faith. I had always believed I would be fine. The tumour had NEVER felt real or

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part of me, even after all this. Needless to say, I think it is probably easier for others to find it serious.

Numbers 24 " ' "The LORD bless you and keep you;

25 the LORD make his face shine upon you and be gracious to you;

26 the LORD turn his face toward you and give you peace." '

I am so blessed in all areas of my life and I am grateful that fixing up my body was my only big worry then. Everything else in my life was managed by someone else.

Blog Entry : What I miss - 28 August 2008

It is strange what you miss when in hospital... And it is usually simple things...Being able to make a decent cup of tea or milo (This is the biggest)My hair (obviously)Quiet (this is also usually hard at home anyway)opening a cupboard to find something new to wearhaving something to do in the day or go somewhereall my family especially my kids

I realised that lying in bed was not going to help me recover and I should at least go for a walk. It actually helped. I was

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relieved that my side effects were far less than they could have been.

The pain was like a wong wong feeling (think star wars). I was taken off the real drugs because I had an allergic reaction. They put me on Paracetamol. (not exactly useful). I was in real pain that felt like a big throb. Sleep was impossible. I got 4 hours in one shot at best. Sometimes I had really bad dreams which wake me up feeling confused. I was so scared during my dreams that I would wake up crying. I didn’t know what they were about but they were strange. When I woke up it felt like I had fallen or been hit in the chest. Later on we think it was the anaesthetic. They did have to wake me up during surgery. I had been out for 12 hours in total. Each time I was woken up they had taken out the ventilator. They had also made me hyperthermic which I think explains me being cold all the time.

My short term memory was a little shot. Writing in my blog took a really long time because I battled to spell or get my grammar right. I would have to read it over and over again. Writing was a life line. It helped me remember what had gone on and became an outlet to express my feelings.

D,Your "voice" on the blog is sounding better and better. You are obviously living strong through this. I'm reminded, as I was by how Sandy dealt with it, that women are far stronger than men. And wow, photos of the surgery even... and I thought I was being brave by posting photos of Sandy in the hospital the day after her 2nd surgery.

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Here's a link to them in case you never saw them, linked from May 2006 archive page on the blog. ...you'll see some all-too-familiar-similar things. I'd like to imagine that she's an angel in your room right now, helping watch over you.Take care, stay strong and keep that great writing coming.Love, Dan

I was scared to leave the hospital. I had been there for 3 weeks and I felt like I was being taken care of. I didn’t know what I would do when I left.

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Chapter 9

Get up and out

When I was finally released, I was really happy. I thought I would be scared but I wasn’t. We had rented a small apartment next to the hospital. I was quiet and peaceful. James and I hired boxes of DVD’s and literally just waited to get my results. I have never had as little to do. In hospital there was always someone cleaning, supplying food, checking up and telling you to get up or walk around. It was the most bizarre feeling. All I needed to do was to wake up, bath and that was the end of anything I need to do for the day!! I really had to pace myself!

Blog Entry : Bozalina – 3 September 2008

James will probably kick me for telling you this... I love to make up nick names for him. And not normal ones, I rotate them depending on my mood and inspiration. The latest name I have been calling him is "Bozalina" It is derived from Bozo the clown and my Maltese poodle that I named "Fluffylina" He doesn't feel it is very manly. Anyway, this came in handy. When they woke me up after the surgery, the first thing James asked was "Whats my name" (how

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unfair is that) so I said "James". Then he said "what's my other name" and of course it was "Bozalina"

It is quite hard to fall asleep when you can't put your head anywhere. At night I was still getting panic attacks. I was scared to sleep. The time dragged. When I was eventually called about the results, I was told that they didn’t have an answer for me!

Blog Entry : Mini Brain – 4 September 2008

You won't believe it, or maybe you will... I am starting to realise that "normal", is definitely NOT a good description of me.The doc called today and said that the lab has no idea what the tumour is!! So they are sending it to JHB to some top professor to try figure it out!! Firstly I had to laugh at this... really. BUT good news is that he says they are pretty sure that it is NOT malignant. We are trusting this because it doesn't seem to meet the cell structure required to be that.

So doing more analysis, like I do, I have come to a few conclusions:The person working in the lab didn't do that well during the brain tumour lessonThey haven't done it and are waiting for timeThey have taken out the sleep area of my brain and don't want to tell meMy body decided to create 2 brains just in case, except that Mini Me brain is tapping Big Me brain and irritating it. (maybe this is why it is my pet hate??)

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No I haven't slept yet! Um seriously. Maybe total of 3 hours in 24?  Although I REALLY don't look good, I am feeling good and almost my normal (or not normal) self. I am amazedWe are seeing doc tomorrow for a check up and have the stitches removed. I asked him again how much he thinks he removed. He says he removed as much as he could see, but explained to me that the brain moves all the time while they are operating. He can't give me a percentage but felt it was a lot. He has to delicately keep following the tumour without touching normal cells. WOW I really have admiration for this guy. His hands are perfectly steady and he can remain still for the entire operation. (6 hrs)

The MRI scan will only be done in about 6 weeks. The doctor says that my brain needs to settle down into place. Then we should have an idea of how much was taken out / left. We should have the lab results at the same time...

I still don't know what this whole tumour is going to mean for me in the future. We won't be counting our chickens before they hatch. I am happy (except for hair) that I have done it. I feel that the weight has literally been lifted. I can improve my life for the time being. It has made us realise the important things in our life. What a bizarre way to have to find them out!

We took a walk to the hospital to have my stitches out. Everything seems fine and Dr Melville was happy with my progress. My swelling had gone down well. I had resorted to taking a sleeping tablet to help me sleep. My head was feeling quite full and irritated. I managed to sleep for about 6 hrs after taking it. The doc said that I shouldn't worry about it, I need to get into my body rhythm again. He told James & I to go out to Nordhoek, take a walk and go to a little casual

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restaurant for lunch. SO we did!! I had to build up the courage but I did it. It felt good to get out (even if I feel like a bit of a freak) Luckily not too many people got to see me. The bruised eye is the biggest problem. It was amazing how tired I felt after that little outing.

The following day, we went to see Dr Butler for a general chat. He was happy with the progress. He said that the tumour would have eventually done to me what the 1st operation did and sooner than later. He said that if I hadn’t of done anything, he would have given me 6 months to live. Wow that was scary. There are still tumour cells left around the speech area which is a concern. They seemed to have found the "spikes" in my brain around the tumour that was causing the seizures. They managed to take them out so hopefully that meant the seizures will stop. I was feeling good, the op went well and we could make more plans for the future.

I knew I was getting better when I managed to go out to a coffee shop without being too bothered by my appearance I had a few months to recover and make decisions when we got all the other reports. And finally I slept. It feels ridiculous to have this as such a concern. I felt like my head was really thick and lay down and passed out. We were leaving for Port Elizabeth and I was so excited. We drove half way and sleep over in George again to be back on Sunday. Back to “normal” life...

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Email from Dan – 6 September 2008

Hi DAm just back from a few days backpacking by myself in the high mountains here. It was so beautiful I'm going back today.So good you're back home. You look great in the photos. -- and nice scar! And you have a perfect head, just like Sandy's when she lost her hair after radiation treatments.And it is so great you are sharing the experience openly and articulately and humorously. Keep it going. Sandy would definitely be proud of you. And I'm honored to know such brave women.Take care, Dan

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Chapter 10

The Waiting

Note : Blog Entry about the server crash:

I have a big post missing from September - October. This is because my server crashed. I am hoping at some point to have it "come back"

Basically what happened was, I found out that I had a grade 2 - 3 Oligoastrocytoma. I need to go for chemo and radiation. A lot of the grade 3 tumour was removed.

I was still anxious to know what type of tumour I had and what the treatment options were. I remember Dr Melville calling me and telling me that it seems I had an Oligodendroglioma grade 2 – 3. He had set up a consultation with the oncologist as they thought it best that I have chemotherapy and radiation. I was horrified and just about laughed at him from shock. I honestly had thought I wouldn’t have had to do it. To be honest I didn’t believe him.

Blog Entry : Oncologist – 3 October 2008

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I went to see the Oncologist. It was very strange to walk into a chemo ward. Not scary, just surreal. I knew that the people there had life threatening diseases. Well after one hour of paperwork and another hour of consultation, we seemed to understand a bit better. I had to go on chemo and radiation. The two seem to compliment each other and increase the chances of success. You can only do radiation once in your lifetime, so there was also the question of when is the right time. So, if the tumour got more aggressive, I won't be able to have it again in the future What very was disturbing, was that the tumour might be an oglioastrocyoma. Astrocytoma's are more aggressive. James was at the stage where he wanted to tackle this "head on" (so to speak!) He was not happy with the news. Surprisingly, I was coping alright.

Blog Entry : The Plan – 10 October 2008

The specialists have come to a consensus on my treatment plan. There were apparently a few cells that seemed to be grade 3. This requires active treatment before they are at risk of turning into grade 4. I was so angry, I felt like I had been messed around. I was to go on 6 weeks radiation starting as soon as there is approval from the medical aid. The medical aid had given me allocation per year which covered it. Once radiation is approved, they will do an MRI scan as well as a CT scan. This should happen soon. They will then measure the area remaining, analyse. They give more radiation in the remaining area and measure the original "bed" of the tumour and a lower dose in that area. To do this they build a mask that I will put over my head that will focus the radiation into the affected area. They are giving me a medium sized dose. I will go for radiation Monday - Friday.

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They radiate for about 10 minutes. I will probably go in the afternoon so that I can come home and sleep / rest. Half dosage chemo will be given during radiation. This is in the form of pills. This means that the "poison" is gradual. I am going to get full dose chemo for the next 6 months. This will also be pills. (much longer than I expected)

Side effects:Radiation will cause nausea, fatigue and hair loss in the area where they radiate. There is a risk that the area they radiate will cause permanent hair lossChemo will cause nausea, fatigue and perhaps vomiting. It seems to be quite mild compared to conventional chemoMy life will continue as normal - well as normal as can be expected! You can't stop living! The only disappointment (besides having a brain tumour!) is that I won't be able to make my Egypt holiday :(Otherwise, I went to the Surgeon today (local one Dr Morkel) and he checked my scar etc and said I am looking good and it is healing quickly.

Blog Entry : The Skull – 13 October 2008

This weekend was quite productive, finished my paintings. I tell you driving around is tiring! I forgot... Now that I am a  "Soccer Mom" I have to try to remember when to pick everyone up! I have to get used to driving a massive car. I have very short hair and legs, so it looks like a skull is driving - ignore the pun (or there is no driver at all)  ) The car is so huge it has a step for me to get in (thank goodness) Plus I have to remember to put petrol in! No news from Doc yet, I'm happy about that, don't feel like dealing with it today!

Deir"e Kohler

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Blog Entry : Professional Napster – 14 October 2008

No don't think of the hacker types... I am talking about  professionally sleeping in short patches. (Almost like being a controlled narcoleptic) I have a little routine... grab a bar of chocolate, tea or juice, a biscuit. Spread everything on the bed for easy access. This will help you feel ill and full and force sleep. I like to put a black mask on. (usually I just use a sock) Make sure you have a blanket – in case you get cold. There is nothing more irritating than having to get up. If you have ear plugs, use them! Especially if you are a mom.When James gets home, he knows I haven't been napping if my eyes don't look like golf balls and I don't have chocolate wrappings over the bed. I know I am supposed to be healthy, but hell, having berries all over the bed just doesn't have the same impact! d:)

Blog Entry : The ball is rolling – 14 October 2008

Ok the ball is rolling! My doctor says to me that when the ball comes towards you, then you bat. So its time I start batting. (never been good at sport)I am booked to go for my MRI, CT and mask construction on Thursday. I will post pictures of the scans. I am quite curious to see what is there. The doctor says I mustn't be disappointed, there will still be alot of swelling and it looks like there is still tumour left. He will explain this to me when I see him. The whole process will take about 3 hours.The doctors then build the target areas on the mask using the MRI and CT scans. (very layman explanation) This takes a few days..I am not sure when I will start chemo & radiation, I think as early as next week. Well my feelings on this is that I have to get it done now.

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I am scared. To be honest, I really don't want to have to go through this. The radiation will burn my head in the area where they radiate (like a sunburn.) So I will have to protect it from sun etc. Well will keep you posted... I am very excited and nervous about the exhibition tomorrow.d:)

Blog Entry : The Mask – 16 October 2008

OK - Don't hold me to it... I got the scans on CD from the radiologist. I haven't been to see the doctor so that he can explain it (curious George you know). It is been sent to the "panel" of docs in Cape Town again for them to decide on the best treatment (dose etc) as when as the location of the radiation beams. They said that there will still be swelling which may make the scans seem worse than what it is. I have put brief explanations next to scans (Like I said I am guessing)I had a mask built, MRI and CT scans. The mask is very strange. They put this plastic type thing over your head while you are flat on your back. It is quite hot and flexible. It then covers up your face but they leave a gap over your nose (I haven't been able to hold my breath for 10 minutes yet!) Your eyes are closed and as it dries it hardens. They then "unclip" it. James says I could pass for Hannibal!

The MRI & CT scan is simple. They take about 10min and 5 min respectively. I had the mask on for both. The MRI is VERY loud and makes a lot of different types of noises. (Banging, beeping, etc) The CT seems to have a lot of lazer & heat. It is FREEZING in there. I was blue (plus I didn't shave my legs so my hair was standing up about a meter high!!)

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Blog Entry : Hospital Outfits – 17 October 2008

Who designed the hospital out fits? They make your boobs look like they hang a meter lower. The colours are bad, bright white makes you look like death. (Why encourage it?) Then there are the blue ones which are made of a weird texture. It is freezing in the wards, everything is cement, and they give you a thin outfit. Hypothermia here I come...I have seen very interesting butts. Some of them you really don't want to see. It doesn't matter if you are a super model, you are guaranteed to look hideous (Leo's new word)

Blog Entry : How am I feeling – 18 October 2008

When people see me, the first thing they usually ask is "How are you feeling?" I am not afraid to be honest. I remember that when my Gran died of cancer, she never really told us how she was. I was quite upset. Getting the answer "fine" was really irritating. Since I have been going through this, I have realised that most of the time I am fine. For some reason, people think you shouldn't be or just don't believe you.So how am I? Physically, my head still hurts and the bone hasn't fused yet. It does the clicking thing. Thats frustrating because I can't sleep on that side yet. Emotionally, I am worried about chemo and radiation. I am not happy to go through it. I think half of the problem is that I don't know what to expect. You hear horror stories of what people experience. It is a shock to be "sick" enough to have to go for chemo. It is really difficult not to feel like "Damaged Goods" I sometimes feel very shy.

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I don’t want sympathy or pity. I think that is the worst. I have been chatting to some people who are going through much worse and realise that they feel so isolated. The best is to treat a person as normal. We don't want to be reminded all the time! We haven't changed. 

This is not supposed to be depressive. I just think it is important that people know how it feels to go through it. I am really blessed to have the friends and family I have. My blog has been an outlet and I am able to show that not all is doom and gloom! We still want to live our life to the full, even with our health challenges! But by all means ask how I am!

Blog Entry : Waiting – 21 October 2008

I haven't written in my blog for 2 days ... I just don't know what to say. I am just sitting here waiting for some news. Life carries on...You will all be happy to know that I have been eating up a storm. Hoping, of course, that I will loose it again once treatment starts! James says he doesn't mind "chubby whubby" How nice - I could smack him or course. Yesterday I had to admit that I have cancer. Don't we all hate that word? It must be on the top ten. Thinking about it is so scary. Even though my tumour is benign, by virtue of it being in the brain, they have to treat it as such. It still invades healthy tissue because it has nowhere to go. It can, of course, turn malignant and then invades at a very high rateI am so excited about my art. I went for life drawing last night and I suck. (I am NOT joking) I think wild is more my style. James refers to it as "steroids".

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People ask me if I think the tumour has brought out the right "creative" side of my brain - I have no idea. The left still seems to be working? It is nice to think that is has had some benefits!Yesterday I was on the radio and newspaper - seems like I am a short haired celebrity. People love a story. I have been so happy that people, going through similar experiences, have benefited from my site. I have had a few people speak, call or email. It makes me feel great and make it worthwhile. It makes me feel less isolated.

Blog Entry : Brain Hole 2 – 22 October 2008

Yesterday I found that I actually had another "brain hole". I also discovered that it actually has a name "burr hole" I wasn't too far off. It is in my crown and that area has been very sensitive for me up to now. As you can see in the image, they make 2 holes (in my case) and then use a machine that twists between the 2 holes creating a circle. They then remove the brain flap. When the op is finished they replace the flap. Hopefully the holes grow closed again (James assures me they will)

Blog Entry : Stand in the Queue – 23 October 2008

I can't tell you how frustrating it is to sit and wait for an answer WRT my treatment and what the results are of the operation (ie how much was removed, how much remains, grade etc) Perhaps the fact that there is no rush is a good thing. The waiting is driving me crazy. You are at the mercy of the doctors, feels like you are standing in a really long queue (like Woolworths on a Sunday morning)You just can't plan your life. In the meantime I am getting bigger... I hope they don't take too long to get back to me.It is really hard to concentrate at work. Luckily I am not under too much pressure. I had a real laugh on the weekend, we were

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watching a South African spoof movie. There was one scene where they have "speed dating" but instead of trying to find a date, there is a long row of "BEE" partners, you have 2 minutes to move from one to the other!

PS Anastasia turned 13 today and my Gran turned 80 yesterday!

Blog Entry : More Information – 24 October 2008

So it seems like I spoke too soon on my last blog! Dr Dupper called yesterday, he said that the last scan was a planning scan and not a diagnostic scan. This in English means that I am not going to get all the information I was hoping for... What we did discuss, is that I am starting radiation and chemo next weekSome information The big block "hole" in the last scan picture is the part where they took out tumourThe remaining lighter white border area is tumour (he thinks low grade)They are going to radiate the original area (before op) as well as an extended borderThese tumours run like tentacles through your nervous system (once again layman version)Therefore you can never remove all of them because they run too deep into the brain.Chemo will be half dose for 6 weeks and full dose after that for 6 monthsThe doctors all agree that this type of tumour needs the most aggressive treatment

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So not very good news. Maybe this is making my right brain more creative? Next I am going to be writing music... Don't worry I am not planning to cut off my ear! (Only part of my brain)

Blog Entry : Ramp Model – 27 October 2008Before I went into surgery, I have to admit that I did consider a little "nip tuck" You know 3 kids don't exactly do much for the stomach or breasts! Now there is NO way I will do it. Besides the fact that I never want to go under the knife again, it seems so futile. After I came out of surgery I was really happy to be "in tact" It is such an accomplishment to have got through. I realised it is the same with our bodies. They are all battle scars and we should be proud of them. It is hard to handle as our society is very materialistic. We also battle with our inner self to live up to these standards. I have to admit I have always wanted to be a ramp model. I try to ignore the current state of my body, that I am shy  and the fact that I am about 2 metres too short - I can do it!

Blog Entry : Achieve your goals by 20 – 28 October 2008

I was so inspired last night. I went to Anastasia's end of year function. They kids did various speeches. They were funny and motivational. They are so eager to take on the world and life. But the real inspiration for me was to meet a Para-Olympic. He is a young man (about 17 I think) He won a gold at the Olympics. I can't even attempt to swim as fast a he can and I still have all my limbs. (ok beating me in swimming is a given)I realised listening to him, we all do have inner strength to achieve. We need to "tap" into it. I struggle sometimes when I think of the "stats" and "prognosis" of my tumour. Prayer and the energy and strength that is given by God makes it easier.

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Oh, a lot of the kids wanted to BE RICH, they would also meet most of their goals by the age of 20. You go then...

Blog Entry : Treatment plan (again) – 29 October 2008

Went to see the doc and he showed me the treatment plan for next week. Probably starting on Tuesday / Thursday. It is amazing, he showed us the comparison before and after surgery. I can't believe how big it was. The amount of brain that was being squashed was unthinkable. So I wasn't pretending! He said that it looks like the high grade has been removed par for a very small amount around the edge. Whats left is all low grade. Shew!Chatting about side effects is always "fun". Oh yay can I go through that please...

Then as we were leaving, he tells us about this new machine, they are getting next year, which will probably be better for radiation... Now because it is low grade, I could wait for it or try stop grown and go for it now. Remember that you can only do radiation once in your life! ANYWAY, we going to chat to him about this as an option...Ignoring that little fact, I will probably start next week. I just love the way everything has been so clear! I am sure that you must think I am making all of this up for "entertainment" value!d:)

Deir"e Kohler

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Chapter 11

Life!

Please join us for the informal openingof an exhibition of paintings by Deirdre KohlerWednesday, 15 October at 5 -7 pmKühne Boekkooi Gallery 13 Walter Road, Charlo(off Buffelsfontein) ................................................................................................About the artist Deirdre Kohler was born in PE and after completed her schooling in Grahamstown she went into IT and later started a website company. She left the company 5 years later is now consulting as a business analyst and project manager; working mainly in managing data and communications.

Two years ago, after the birth of her third child, Deirdre was diagnosed with a brain tumour. Her husband, James suggested that she try painting as an outlet and bought her a canvas and basic paints and Deirdre started painting with an old paintbrush. After many compliments about her work she started to display it in offices

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and home. At this time, a few people recommended that she display her work in a gallery.

In August Deirdre underwent brain surgery. During her recovery time, she spent time painting and maintaining her blog website about her experience with a brain tumour.

Her abstract paintings uses colour and texture to express the subject. Most of the paintings deal with current situations / inspirations. Her paintings are large and bold – the largest measuring 2,5m x 1,8m.

After I was diagnosed with a brain tumour, I felt extremely frustrated. James recommended I take up painting as a creative outlet. I Over 2 years I surprisingly managed to produce art that was worth looking at! I was encouraged to exhibit my work. It is completely abstract and I don’t follow any particular rules. As James is an architect, I trust his artistic eye. He usually guides me as to whether a painting is “finished” or not.

After my surgery and on my return back home, I had my first exhibition coming up. I had to exhibit 15 pieces. I had a few that I had done before and needed a few more pieces. I decided to short cut it and one of the paintings I did was massive - 2.5m x 1.8m.

It was entitled “Life” it was my interpretation of my operation. It has a very Jackson Pollock feel. (James adds “with steroids”) I had no intension of following any style, but rather it was a natural expression of my frustration and experience. It was a

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very different approach to the style I had before, which I enjoyed. Upon analysing (as I do) I ‘think’ it was my way of expressing what I battled to say. Interestingly, my tumour affected the left side of the brain which is the logical and speech area. The right side controls art / creativity. I believe that this side has become stronger now that my left side is affected. I might, however, be wrong!

Since then I have had a corporate commission, but taken a break since we moved until I can find a studio again!

An email from a friend and long time artist – Cedric Vandelinden

Hey there, D,

I trust that you’re well. It was really good to see you guys.

I am really impressed by the progress that you have made in terms of expanding your visual vocabulary and your palette. You’ve certainly taken it a lot further than I thought you would and that, in and of itself, shows great dedication, thought and ability.

With that said, an artist has only two sources to draw from (like every other human being): the internal world and the external world. One without the other leads to the merely decorative while the powerful and enduring, what we call art, arises out of a marriage of both. To clarify, imagine the following example: you are walking in a green field surrounded by a dark grey fog and, while you’re walking through it in silence, it brings you to a mental space where you feel as though you’ve stepped into a fantastic dream world. It makes you

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feel both calm and excited, curious and frightened. When you return home, you then decide to paint that landscape, the green field and the fog as faithfully a possible, down the last little blade of grass and the dew drops. In this case, you would focus, exclusively on the external, ignoring your internal reaction to the scene. The resulting painting, while technically proficient and, I am sure, very beautiful to look at, would, nevertheless, be purely decorative. It would convey nothing more to the viewer other than a faithful depiction of a scene.

Now, imagine the reverse: when you returned home, you set about painting your emotional state but chose not to have it informed by the environment in which you had found yourself. You paid no heed to capturing the colour of the fog, the texture and colour of the grass, the immensity of the space around you or any of your sensory input. Here, you focused exclusively on the internal. The resulting painting, once again, while technically proficient and, I am sure, very beautiful to look at, would, nevertheless, be purely decorative. It would convey an emotional state but would offer the viewer no means by which to access it and step into the same emotional space as you.

In order to make one, or the other, approach work it needs to be informed by both worlds. The faithful landscape needs you to be aware of your emotional state, which would allow you to push and pull the elements of the painting just enough to communicate “something” to the viewer. Similarly, the more expressionist approach would need to be informed of the visual world around you for, how can you abstract fog and grass and distil what you need from it, if you are not able to capture and convey “it as it is” first. The conjuncture of the external world and the internal world is what gives great art its life and longevity. It’s what differentiates a

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Brittney Spears from a Rachmaninoff, or a Sunday painter from a Manet.

So, if I do have a comment to make, it is that: At first glance, I found myself looking at your paintings, impressed by your competence with a difficult medium, interested by your bold mark-making and colours, and, overall, taking pleasure in the results. On the second pass, however, I found myself asking “What now?” “What is she trying to convey here?” “How can I, the viewer, access that space?” and I couldn’t answer those questions. It is clear that the works require more visual information. A blue is not just a blue. Is it a blue from the sea after a storm? Is it a blue from your kid’s eyes? Is it a blue from dusk? For it is in understanding what makes them different, that will entitle you to draw from it what you require to take it from being a painting to being a work of art.

And it isn’t easy. It is, in fact, difficult and not for everyone. I should know. I’ve been painting for over two decades and I am still only now on the first few steps of discovery.

I also saw a lot of Pollock, Kline and Motherwell in your work and, obviously, you have some knowledge of their techniques and abilities. What I recommend that you do is read An American Saga which is a biography of Jackson Pollock (on which the film, Pollock, was based), as well as do some reading on their supportive works (their sketches, preliminary drawings, life-drawings, figurative paintings, etc.) to give you an idea of the process that they followed to get to where they are. A perfect, but less expressive, example of that, of course, is Picasso. Compare his drawings and his observations of the external world and see how he used that, manipulated it and distorted it to give rise to his cubist visual analysis.

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I hope that helps. It was really a kickass exhibition. Congratulations.

CedricThank you to Jackie and Ettiene Steyn for their concern

during treatment, friendship and support of my art. They

bought “Life”.

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Chapter 12

Taking a break

Blog Entry : Egypt? – 2 November 208

At the beginning of the year, I booked a trip to Egypt and Dubai. It included full tour for 7 days. I have paid half of it. So ANYWAY I went to the travel agent to cancel. She suggested that I ask my doctor for a medical certificate, saying I can't travel ,so that I can get a full refund. When we asked the doctor, he said I CAN travel while taking my chemo pills.I don't know about the rest of you, but the thought of being tired and sick while climbing the pyramids, was not exactly what I planned. So then we got to thinking, could we maybe go anyway? The trip is booked for 3 weeks time. The doctors have delayed the treatment for 5 weeks since they told me I need to have it. They are doing the treatment over the tumour's margin anyway. Also I only seem to have low grade cells left. They seemed to have got out about 95% high grade. Any high grade that there might be is around the edge and can be removed.This means I will start treatment 3 ½ weeks later?... What do you think? I will ask the doctor for his advice. Personally I don't think it will make a huge difference waiting. This will give time for my scar to heal before they radiate that area... I will be sick for 6 months

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after radiation... So much to decide. James is keen that we go, he says we need to take our mind off all the pressure this year.The clicking doesn't stop, it sounds like the till when you are buying your groceries. (It has stopped me spending money) We recon it is the bone knitting.) Thats good news...

Blog Entry : End of the year panic – 17 November 2008 We are booked to leave (all signed and confirmed) on the 8th Dec and return on the 22nd. I must be honest, I have spent the last few nights pretending to sleep. Besides the usual - I have a baby lack of sleep - I have been quite anxious about all the stuff going on. Between medical, kids exams & end of year functions, holiday, trying to finish work etc etc, I am trying to do another painting to put into the King Georges Gallery. A holiday is definitely in order - and that costs a lot of money, another worry. But I need the break.

Blog Entry : Anxious - 20 November 2008

I am really anxious today about my tumour. It is so strange, I haven't felt like this before. I suppose that they telling me to have chemo and radiation is scary. It has serious side effects. I asked the doctor about what I can expect and he said you may be "slow" SERIOUS?? Thats just great to hear. It is not just the tumour I have to deal with, but also the side effects. I am tired of hearing all the stats. Although I really want to know what to expect, they are depressing.

I need to try all avenues. Time is always a problem. Nothing is simple. Some days I just feel like ignoring it. I really can't have it consuming my life. I am looking forward to my holiday. I want to

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gain strength. But I can't pretend it won't be at the back of the "mind"!

Comment left by Barbara Terblanche (My aunt)Dee, I can't even begin to imagine what you must go through on a daily basis. It is only natural that you will have down days.

I know this has to be so hard for you, you have always been the strong one, but you know a little self pity is not all bad. Indulge yourself and then move on.

Philippians 4:6 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God".

This verse has helped me on many occassions - hope it helps you to.

Wish there was something I could do for you. Just know that our thoughts and prayers are with you always.

Lots of love,Bar

Blog Entry : Prayer – 21 November 2008

I would just like to thank everyone who has / continues to pray for me. I believe in prayer. I have a lot of chats, moans, thanks, pleads and adoration for God. I probably chat more to him than I do to James (he doesn't start snoring in the middle of the conversation / monologue)

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It is fulfilling a spiritual need for 'friendship' I have seen many miracles and answers to prayers through this time. I don't get angry with him, I am very impatient and wish He would sort this out! I have explained to Him that I feel I have enough 'character' and need to live in peace! I think He appreciates my sense of humour!

There are some things that cannot be explained by science. However you do it, there is power in prayer. We have been created in the image of God and He has given us the power to face all things through him.

Do you know that it is much easier for me to write this into the cyber world than speak face to face. It gives me time to think and makes my thoughts clearer.

Thank you Bar for that verse you sent me (it is in the last comment)

Blog Entry : Melancholy : 25 November 2008

For some bizarre reason I actually usually feel quite blue on my birthdays. I suppose it is a time of reflection over the past year. Every year I set goals with what I want out of certain areas of my life. It is good to see the successes and reflect on the "misses"

I must admit, it is hard to set the normal goals because I am not sure what the treatment will involve. But the normal ones, travel etc, should not be affected.

Well a year older, it feels like just yesterday I was 32!

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Egypt was a place I had always wanted to see, so I did. I didn’t want to go through chemo and radiation not having seen the place. Looking back, I wish I could have been stronger to take it on a bit more. It was just so nice to get away from the monotony and the stress that I had been through that year.

In summery, the history was amazing and the architecture for James was very impressive. It is so sad to see that there are so many places still in ruins but encouraging that a lot of them have been restored. The religious link between now and 5000 years ago, just proved to me that from recorded time man knew there was God. I have always been fascinated by that. Some interesting things I learnt from my trip:

Blog Entry : Some Interesting Things – 18 December 2008

This is going to be our last day touring in Egypt. I can't believe how quickly the time has gone. We have learnt some things the hard way but we have slowly started to smarten up!

The place is very dirty by our standards. The floors, streets, doors, walls, seats are all full of soot. It doesn't seem to bother anyone either. Most of the work force are men. They do everything, housekeeping, maids, cleaners, waitrons etc. (maybe thats why it is not so clean!) Only about 10% seem to be women.

Don't greet or look at anyone if you don't want to pay them money. Its nuts. The traders here are absolutely bullet proof. They will follow you for miles and don't seem to care. If one approaches

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James now he just raises his hand and says "No" Even that doesn't deter them.

They have every type of vehicle on the road, even horse drawn carriages. We are right on the beach front, on a main road, so the hooters and cars go 24hrs per day. You won't believe that one guy on a cart stopped in the middle of 4 lane traffic, got out of this cart and ran after us asking us if we want to get in!

Yes, we do feel like we are living inside a computer game like Mario Brothers. You are dodging, diving, hiding, avoiding, running, watching --- :)

I wouldn't come here on my own. Get a tour group, they do everything for you. Pick ups, drop offs, tours, tell you where to buy food, carry your luggage. As I said before, their service is great. You will have to tip for everything, but it is worth it.

I have had a great time here despite all the little quirks... d:)

The ancient Egyptians had the belief that when someone died their heart would be weighed. The heart would be weighed on a scale with a feather on the other side. Should the heart be heavy, the person would not be welcome into the afterlife. It really made me think that we shouldn’t go to bed with “a heavy heart”

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Chapter 13

Ready Set Go

I couldn’t avoid it any longer. I had resigned. Although I still didn’t believe I was actually ill – everything else told me I was.

Email from Dan : 28 December 2008

Hello DJust wanted to check in... been keeping tabs on your trip to Egypt - nice diversion hopefully!And to let you know I'll be sending some extra thoughts your way as you get ready for the chemo / radiation.Sandy faired pretty well with the radiation and chemo side effects -- mainly fatigue and no appetite. She never really got too sick from it. So hopefully you'll do as well.A belated Merry Christmas to you and the family...Prayers and keeping the candle lit for you as we enter a new year...

Love, Dan

Blog Entry : Back to reality - Sunday 28th of December 2008

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Last night was plagued with weird dreams and concerns. I can honestly say that for the first time I felt really worried / nervous about the radiation and chemo. I felt like I did the night before the 3rd operation. It just seems like the reality set it and hit me hard. (Yes I am slow) Besides the normal side effects that concern me, this means a change of lifestyle, even if it is temporary. All of this is quite daunting. Being out of control of your own body is really horrible. I have never been keen to do it but I am reluctantly going forward. I am at that stage where "this better work" Tired of being messed around and having my emotions on a roller coaster. I have learnt one thing through all of this, never look at stats just before you embark on treatment. (I mean look at it long before you start) Otherwise all the negative stuff flies up to greet you with a bang!! I will have to have blood tests first to check my platelets. Then it is all go. Physically, I am feeling good. I have enjoyed my holiday, eaten well and I am looking forward to relaxing at home a bit. It is still hard not to feel like "used goods" So my most important New Year resolution is to get healthy (total healing being the optimum!) I had a good laugh, James' Aunties have recently moved into a retirement village. The sisters went to the normal end of year Christmas dinner. Not knowing anyone and feeling a bit awkward, Glenda's opening line was "Isn't it bloody awful being old" .........No-one found that funny??

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Blog Entry : Cyborg II - 29th December 2008

Well the first day of radiation and chemo went quite smoothly. They put me in an alignment machine first to insert the plates and check that the radiation beams would hit the right spot. Well I really do feel like a cyborg. The mask they put on is really tight and all that sticks out is your nose (something like Hannibal) You get rotated around the room with red alignment beams. Because you can't see you have no idea where you are in the room. Thank goodness I am not claustrophobic.

The actual radiation is fast - about 10 minutes start to finish. I have 3 main beams that come from different angles into the left side my head. The radiated area is about 10cm x 10cm (This is LARGE) They took the size of my tumour before the surgery and have built a margin on that. It is a cut out area so its an odd shape.

I was told again that I will loose my hair in that area. (I really don't want to hear that) So I am going to have a big 10cm "hole" where there was once hair. NOOOO.... What is it with brains, chemo, radiation and hair?? Then they added that there is a very small risk of your hair never growing back. (I ignored that) Any ideas on how to manage that? If men can have a comb over, why can't I? James suggested that I just shave everything. Then I will have to shave the other half of my head everyday... Maybe I can just use that spray on hair...

The ladies complained that my hair has grown so much since I had the mask fitted (6 weeks ago) that they had to adjust it because my 3cm hair was pushing it out. Thank goodness I didn't put hair extensions in!!

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PS James is a budding photographer and has not learnt the art of how to take a photo without making your arm look huge or your toes skew. Of course these things are usually perfect.

I tried to go on a health diet. I bought TONS of berries, vegi shakes and yoghurts. My family were not happy at all and looked at me with evil eyes. I had every intention of going all out and making the most of it. I believe in eating healthily, but we still need a balance. Taking away all pleasures in life is not worth it.

Blog Entry : Eating for life 30 December 2008

Chemo has been fine. I think it is too early to tell just yet. I get this strange cold feeling running through my veins. It seems to last about an hour and then go away again. There is a little bit of nausea, but I take the anti-nausea and that seems to work. I take a regular afternoon nap so tired ness seems manageable.

I have been eating up a storm. Our fridge has never had so many health foods or been so full. I keep looking for chips and chocolate. Has anyone every got fat while on chemo? I think I might be the first one in history.

My blood counts is very good. I am so impressed. Obviously my body is not as week as I thought!! Must be the health food and the tons of vitamins I am consuming... Can't someone invent a super health food that is in a chocolate. I prefer Cote D'Or (dark with nuts)

I remember clearly – and bizarrely – how good I felt when the chemo caused a cold rush of blood through my veins. I have no idea what I was thinking, but I think it was because I knew it was (obviously) working. It also felt so incredibly strange –

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almost pleasurable. It is actually hard to describe – I lay straight on my bed, stared at the ceiling, and let the cold rush through me – and smiled.

Blog Entry : Don’t Laugh 31 December 2008

I have this terrible dilemma. When I get nervous I laugh. So when I walked into the chemo room, I really had to control myself from laughing or even smiling excessively. (Don't want to cheese anyone off) It is something that has got me into trouble many a time!! I managed by looking around at the reading material which I have read 1000 times already.  The people in the chemo room (having IV treatment) seemed to be in good spirits. They had their books, friends and snacks. It is quite surreal. It almost appears normal. Like you are at a pub, just have IV drip instead of beer. (Probably has the same effect) There are some people I know that would rather be able to drip the beer into themselves.  We all know that they have life threatening diseases. I am just so glad that I don't have to have a drip. Needles and I are not friends. Taking a pill seems quite insignificant. A glass of Champagne would go down better.

New Years Eve

I remember sitting on the couch and saying to James “I really can’t go” – to a new years party that is. Besides the tiredness, I was emotionally finished. I didn’t want to deal with people or tell them about my brain tumour or feel embarrassed about my appearance. It was a dull subject and well worth avoiding – well according to me

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at least. I sat with my parents and thought “this is hell” – not because of them – because I had become a child again. Not something I particularly wanted to be. I wasn’t tired enough to sleep but tired enough to not be able to do anything. It is the worst feeling, like travelling around in a desert.

Blog Entry : Happy New Year 1 January 2009

Well another year and another fresh start. Yesterday was a bit tough for me so I spent most of it in bed. James then too the kids to his brother's house for New Year / Birthday party. (His birthday is on new years eve!) I got the bonus of having my parents babysit me.... I feel so mature! My family are very concerned, which is good I suppose.  I don't have to go for radiation today (public holiday) YAY... the thought of this carrying on till mid Feb is very daunting. You know when you are little and you can't wait till Christmas day to open your presents, so you decide to sleep most of the 24th - I want to be like that. This year I am stumped as far as new years resolutions go. Other than the obviously, my life seems to be a bit in limbo. I think I will just take it easy and as it comes (this will not be easy for me to do) Anyway, I am trusting that this year will be good and peaceful, both externally and internally. I pray that you will have a year that is Happy, Healthy & Wealthy and your life will be filled with much Love

Deir"e Kohler

Pa# 120

Blog Entry : Eat Chips 2 January 2009

Well, today felt like a Monday. All things back to normal. Shops busy, hospitals buzzing & house work. Radiation went alright today. I just feel that my head gets a bit hot. I wonder how it is affecting me when I lay there. I just keep praying that it is killing the stupid brain tumour. It is nerve racking being in that machine. My heart beats double time. I don't want a big gaping gap in my head - I just want to look normal again. I am determined to try carry on as normal as possible and take pride in myself. Pity is not for me. Chemo has been fine. I have been craving chips (salty junk) like you can't believe. I can't face fruit but been forcing it in every now and then. I swallow a huge heap of vitamins to try compensate. I really have been eating a lot, more than usual, and that is actually making me feel sick and bloated! Might have to taper down somewhat. Not having any Champagne on New Years was a real bummer. My husband is keeping a close eye. It is like being back at boarding school. Sorry, I have to run back and get some more chips (anyone know of vitamin enriched chips?)

Email from Dan 2 January 2009 

D,Thinking about you and sending some peace and a whole lot of strength your way on this first day of the New Year. Your writing about this experience continues to amaze me and is so much like Sandy's outlook and attitude... here's the "patient" inspiring everyone and making us laugh (and cry at the same time).

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I thought that was our job, but you're so much better at it, you folks with "brain tumors" - not "brain cancer" -- Sandy hated that term too! She always joked - "what's the worst thing that always happens to someone in a movie? It's not just cancer -- it's a "brain tumor"! Lucky me, I'm a star!"

Blessings for the New Year,Love, Dan

Blog entry : One Week - 3 January 2009

Today, I was going to write a dreary blog about how sick I am of having a brain tumour. How horrible it is to know it is there and it is not listening etc etc ...Yes, it is very tiring to know that there is something in your head "cooking" up nonsense. What has been really bothering me is the effect that this chemo is having on me. Every time I swallow the pills, I don't want to think of what they are doing to me. Its such a bizarre (read archaic) form of treatment where you have to try break everything before you can get the one that's causing the problem.

So one week of chemo is over - only another 25 WEEKS to go (I'm trying to temper my enthusiasm) My digestive system has come to a complete stand still. This was discussed with the chemo team as a "post" contraindication. (take it first and we will tell you whatever happens is normal) Why thank you very much. It seems like the medical department are taking a "fry and dry" approach. At least I know now.

The reason for my lack of pessimism in this blog, is due to the numerous other blogs I have been reading. Seeing people manage

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through much harder things, puts your life in perspective. Some are just funny. Blogging is good for the soul. Mom, I suggest that you blog. It will be easier than the hundreds of 'conversational' emails & sms'. Unfortunately there is already a blog called "My husband calls me WEIRD" (LOL)

Blog Entry : New Years Resolutions 4 January 2009

I am so sorry but I can't help myself.  I attempted the noble resolutions but I realised as I wrote them how unrealistic they were... This is the discarded one...Try make school sandwiches instead of finding money so the kids can buy from the tuckshop.Attempt to cook - Don't poke James when he is snoring like a steam train next to me in bed.Don't get irritated when he sleeps inDon't hog the kids playstation or WIIDon't sneak eat all the left over chocolate during my 'afternoon nap'Try not to turn the children into personal slaves / porters/ waitronsExerciseWork

I think I will just do what I did last year...Make millions (in my dreams)TravelFight a brain tumour

I should have probably added : be tolerant, love and persevere. Which is what my year became. I love my family and they helped me reach even better goals.

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Blog Entry : Radiation Update 5 January 2009

Well I am into the second week of radiation and chemo. The good news is that my blood count hasn't dropped at all. - Great news. But I am still on half dose while getting radiation.  The bad news. I asked them how big the radiated area would be on my scalp and hair. They are radiating 10cm x 10cm - quite a large area.  It is radiated from 3 different angles. From the top of my head, just behind my ear and an area near the back. Plus you loose hair on the exit sites, which is on the opposite side of the head. The ladies doing my radiation suggested that I get a wig, most patients do, including some men. So its time to look for a funky style...

Blog Entry : Just an ordinary day - 6 January 2009

Well not much to report ... things were fine, I popped into the office in the morning to catch up on a few things. Then of course, headed onto a coffee shop. After radiation, I had a consultation with my oncologist (Dr Dupper). He has given me antibiotics because sometimes the chemo causing susceptibility to a lung infection. More tablets - YAY now I can round it off to 14 per day at different intervals.

I am still feeling fine, not really tired - I try nap in the afternoon anyway. I haven't had nausea, but I am on tablets. He gave me a

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different tablet to take because the one I have causes constipation - you think? Anyway, thanks for waiting a week! It was actually quite nice to talk to him and just a feeling of 'progress' He said that after the radiation, he will double my chemo tablets but I will only have them for 1 week on and 3 weeks off. - That sounds alright (as alright as it gets) Mom came with me and got to see how it all worked. Its quite interesting if you are a "newi" She behaved herself and only spoke for me about 4 times! Good Mommy

Blog Entry : Rash – 7 January 2009

So today I started antibiotics to prevent infections on the chemo medication. I broke out into a red rash on my face, neck and trunk. I looked like I had a sun tan. MMM No sun bed needed and no extra freckles.

So now I am on cortisone ... really I think I need to get a flat next to the hospital. I do get a lot of attention, but I would rather get it from being a movie star or a ramp model...

Blog Entry : My brain garden – 9 January 2009

Well we are off for the weekend. I am happy that it I have 2 days break from radiation. I have completed 2 weeks! YAY  Yesterday I was weeding the garden. (I really was) I did get the kids to help. What a lot of work... I have new admiration for manual labour.

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 While I was weeding, I realised that all gardens no matter how big or small get weeds. It doesn't matter how simple the garden is or the weather conditions. As I was pulling out the weeds that tentacle between the plants, I realised that my "tumour frying" tumour works the same way. The tumour tentacles through my brain and needs to be pulled out. The bits that we can't remove need to have poison thrown on them. Some of the plants are affected. It has been the same way with surgery, chemo and radiation. I had a new way to view my treatment. I realised that I need to weed this out of my head and know that the benefits outweigh the negatives . What a hard task, especially for the deep rooted bits. So, we all have to look after our bodies (gardens). I felt that I wasn't a freak. Something has invaded me and it is time to get rid of it. The more we watch our gardens the more manageable the weeds are. It doesn't mean that we won't get them ever, we all do. It does mean that we should keep a good watch on them!  Some "deep" thinking for the weekend!

Blog Entry : Back on track – 13 January 2009

It was nice to have a break this weekend! I did take my laptop, but forgot my connection so I had to do something else... Well back to radiation (I am trying to temper my enthusiasm) It really hasn't been too bad. I can feel that my head is starting to get a bit sensitive, especially when they put the mask on. It seems to be too

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tight and hurts a bit. The ladies tell me its from the swelling. I still have all my hair (I keep rooting that it is going to stay that way) Chemo is fine, I really don't feel any different to normal. I have always been one who gets tired so that is not really an issue. I found out that the tablets I got prescribed for when I went to Egypt to stop the infamous runs are the SAME tablets they give for anti-nausea!! No joke. The nurse said to me that they should give it to builders, it will keep houses together! ANYWAY, I have not taken any anti-nausea tablets and have felt totally fine. If I feel a bit nausea coming on, I just take another milder tablet. Blood counts are still within range. My white blood has dropped about 40% but all the others similar to where they started. What is interesting is that something called Eosinophils is VERY HIGH. This is a white blood cell which sometimes overreacts... caused by allergies etc etc... I am investigating this a bit further.  I should have registered to study a doctorate while I am sitting at home surfing the internet! YAY for Google

Throughout my treatments, James was a regular companion. He didn’t mind taking me or sitting with me while we had coffee waiting for the blood results. I think back to those times when he was so incredibly patient regardless of the pressures he went through at work.

Blog Entry : Intelligent Brain Tumours - 14 January 2009

So I had my regular check up yesterday. We spoke about various things - I think that he gets a bit overwhelmed with the number of questions I like to ask. (keeps him on his toes!) He says to me that

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most people with brain tumours are highly intelligent - he wonders if we have excess active neurons! So in a bizarre kind of way, I could take having a brain tumour as a compliment! Maybe I would prefer to be a little less smart. Funny though, it is in my speech area - is he implying that I have an overactive talking skill. I know the treatment is affecting my short term memory. I walk around in circles forgetting what I was doing. It reminds me of Leo who keeps asking me the same question in the car "where are we going Mom?" - his brain reboots every 2 minutes. Time to get a notebook / diary... if I remember to use it. I did have something called a focal seizure in my middle finger of my left hand 2 nights ago. This basically means it twitches from side to side. Very strange, it was like it is swearing at me. I am not sure if I should be concerned or not. It is probably nothing... but I will keep an eye on it. I am actually going for radiation for 7 weeks. They are going to do a lower dosage over a longer period because this helps the healthy cells.

Blog Entry : Understand your body - 17 January 2009

Ok this afternoon the tiredness hit me like a wall! Wow... I had a great nap. And guess what - patches of hair have started to fall out where my scar is. The problem with radiation is that you only loose hair in patches. For me this is going to be all over! Yes I have ordered a wig. I am tempted to order various styles for my mood!  

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I actually started laughing when it happened! It is so weird. I am surprised that it hasn't upset me. My consolation is that if it can kill my hair it can kill my tumour. Why can't I rather loose the hair under my arms? 

While reading another blog, I found a really interesting story. A guy by the name of Ben Williams was diagnosed with

a glioblastoma multiforme tumour (this is the most malignant and most people only survive 6 months) He is a professor of

psychology and started to look at how he could treat himself.  While taking chemo, he added a concoction of other

substances as part of his treatment. He did his research and 13 years later he is still going strong. What an inspiration. You

can read the story on http://www.ozbraintumour.org/williams.htm He has also written a book. The doctor said to me that because so few people get brain tumours, they don't know enough about it, treatments or medication. We are all individuals and react differently. I know this from all the allergies I have had through this. It has made me realise that we all have the resources to help heal ourselves. We know our bodies best. I really do believe this and this is why I surf up a storm on the internet (like I said I should have shares in Google) I am not saying ignore the doctors or professionals, rather work with them, extending whats possible. What a hard task! Now I have a challenge, I believe that my tumour is linked to my allergies. This is not documented and the doctors don't think it is relevant, BUT according to my blood tests I have a high count of eosinphils (a long story). So the most I can do at this stage is to try

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watch my diet. If it makes a difference then I can take it further. (ie if it helps with seizures, headaches etc)   I am also allergic to just about everything ... anyway a few challenges at a time - I hope I can stay awake!

Blog Entry : Smoking 17 January 2009

I can't pretend that having a brain tumour doesn't wear me down. I am so tired of swallowing tablets, going to the hospital everyday, feeling tired and having my whole body go through physical and emotional changes. It is so tempting to look at the chemo tablet and say 'not today'  I look at pictures and think that I would like to go back to looking 'normal'. When my daughter had her 13th birthday I told her that she must love her body as it is because it will never look better than it does today. I sometimes wish that no-one knew about my tumour so that I could pretend that everything was normal. Fake it till you make it. Yes, I am tired, yes I feel like a granny, yes I have to PUSH myself to go for treatment. Generally, I feel terrible. I have a mind numbing exciting day of getting dressed, eating, feeling tired, going to the hospital, sleeping, eating, sleeping. The highlight of my day is the internet! Kids are back at school so at least I can watch TV too!

Email to and from Dan January 19th

 Hi Dan I had the strangest dream last night, I have been having them for a while probably from the drugs I am consuming. I dreamt that you

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and Sandy were sitting watching a child ride a bike. She walked over to me and we spoke briefly about Egypt, she said to me she went there. We gave each other a hug and then she said ‘forgive me’ I didn’t know what I should forgive? Really strange, I didn’t know if I should tell you or not, because I am sure it is nothing but my overactive imagination … Anyway, I hope that you wellD

Hello Dwow, what a strange dream. I read your note this morning and had it in my mind all day as I cross-country skiied and later hiked up the ridge near our home through the snow and fog.... mulling it over. But like most dreams, at least mine, they are usually so strange that any attempt to put a deeper meaning or message on them never seems to fit. The only thing that came to me about your dream was maybe she was asking forgiveness for her dying and maybe affecting your hope in beating this...? I don't know. She enters my dreams but she rarely says anything.. more just a comforting presence, a hug, or holds my hand as we walk. I'm very sure that she's an angel out there, watching out for us.By the way, great cartoon on blog. I hope you are coping with all this - at least your sense of humor is firmly intact and that's a good sign! Take care and stay strong...Love, Dan

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On about the 19th January, James & I realised that we had actually been looking at the wrong scan images. The images that we had been looking at were actually from my MRI in January 2008. It was totally unbelievable. The scans from July 2008 showed the magnitude of the tumour. It had actually shifted my entire brain to the right and most of my ventricles were blocked. The size and magnitude was scary (to say the least) 7cm is quite big in a relatively small brain! It surprised both of us that I didn’t have more side effects.

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Chapter 14

Would you like Chemo with that?

Blog Entry : Would you like Chemo with that? 24 January 2009

Note : (the reason I titled my post that, was because I added a cartoon to my blog – it had one man ordering his take away meal and another man serving him from the counter. It went as follows:

Man buying : I’ll have the half pound, double-deluxe, bacon steerburger , please.Counter Man : Would you like chemo with that?

It still makes me laugh!)

James & I realised that we didn't see the true scans that were taken before my operation. The ones we looked at were taken last year in January! So now that I have these, I thought I would share them - SCARY STUFF - I will show you before and after. Look at how squashed my brain was - especially in the last scan... No wonder I had a headache!

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Wow I can't believe it is so long since I blogged! I couldn't believe it, Wednesday I woke up feeling great and I have been able to get quite a bit done this week. I even "worked" on Friday! Oh and I got a wig... I feel great wearing it and James says it makes me look like I am in my 20's - ! I am actually getting a few so that I can wear depending on my mood! My hair is falling out in patches so on one site I have practically nothing and the other side is normal.  I went to a ladies workshop called Look Good Feel Good on Thursday. Usually I don't like "hype" but it was great having a lot of women going through similar experiences having a bit of time out. The first thing was that everyone pulled of wigs or beanies or bandanas. Free gifts were included which was a nice bonus. I knew 2 of them and I was surprised how young a lot of us are. I have a suspicion that pregnancy really affects a woman's body. I am amazed how much they look after us in oncology. The nurses are very attentive and there are many support groups. I think that I am probably still in a bit of denial about needing anything! Well have a good weekend - I am so glad, no radiation this weekend and only 3 weeks to go. I will leopard crawl along

When my hair started to fall out – I laughed. It was so weird. It stood up straight and fell out a couple hours to a day later. It didn’t all fall out at once, but rather in patches. I would wake up in the morning with more lying on my pillow. (Even more than James’ on his pillow) If I washed my hair, it would fall out. It was actually very painful just before it fell out. It gave a

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hot burning sensitive feeling. Almost like carpet burn. I hunted for hair styles that would look nice on me. I patrolled the internet to find wigs that didn’t look like mushrooms. I was absolutely desperate to look normal. When I found one, I felt relieved and a sense of urgency to put it on. FINALLY a feeling of (pretend) normality. They say (don’t ask me who) “When a woman changes her hair she changes her life”

Blog Entry : Brain Catalogue 26 January 2009

I have been cooking up a storm. It is truly impressive! That is not at all like me, I think these drugs must be kicking in. Today is the normal Monday consisting of blood checks and chemo. I don't know what my blood results are yet, I will have to wait till tomorrow to find out. There were a few of my white blood cells that were low last time... so you never know. Before a patch of my hair falls out, it stands at attention! I have no idea why, I assume it is a last attempt to remain at attached.  So now a patch on the top of my head is gone. I am enjoying the wig, I don't even know it is on. I keep having to check with James that it doesn't look fake.  Last year I was working on a load shedding project for a corporate I never thought that I would have to embark on my own Hair Load Shedding (DNA distribution centre) project... I am busy building up a database catalogue of website links. This is to help people with brain tumours wade their way through the internet. I have 2 years searching education behind me and I know

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what a nightmare it can be. Let me know what you think of the idea and any advice or links you can send me that you found helpful.

Blog Entry : The Bug - 28 January 2009

As it happens my family have decided to come down with a stomach bug. So yesterday I spent alot of my time hugging the toilet. I couldn't keep anything down so the doctor said I must leave my chemo tablets for the day! YES PLEASE. Although honestly the pills are better than the bug - at least I didn't have to do both. I can't imagine how it must be for patients to vomit whilst having chemo. Just the thought is scary. The ladies you go for breast cancer treatment go through the whole bit - its nasty. I don't know if I could do it. Anyway, I just want to thank my brother for dropping the bug off at my house. Dr Dupper has a round of words for you, but I will let him tell you personally. I am somehow supposed to live in a cocoon of no diseases. Reminds me of the movie “Bubble Boy”

Blog Entry : Semi Good News – 29 January 2009

Well I went for an MRI scan today because I had a very mini egg on my head yesterday and it was quite sore. I am so pleased because there doesn't seem to be any growth since the operation. PLUS it looks like what was thought to be a grade 3 is actually scar tissue! So we are still dealing with a grade 2 (benign) YAY YAY YAY.

I am still going for treatment assuming it was a grade 3. The bad news is that my tumour seems to track over the optic channel which

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is a problem, but as I said, it has not grown!! I believe it will stop growing - I should hope so with 10cm x 10cm radiated area!!d:)

Comments on blog: That is SUCH wonderful news, Dee. This is certainly a step by step process... will be good to know how much chemo can be reduced or stopped!Lots of loveYour normal, ordinary, happy Mom (!)

Blog Entry : A beautiful Vein – 2 February 2009

I must say that being told that I don't have any grade 3 tumour has made me feel like it has all been worth it. It has given me new hope on life. I only have 2 weeks left of radiation and then that is the end of that chapter. Yay. I can't wait to get back to normal - by normal I mean 5 years ago. I believe that prayers do work. I have to go for DNA testing to see if I have a gene defect. This is done in the UK and my tissues will be sent from Cape Town. It is recommended that I do this because full chemo.  If there isn't a defect, then the chemo tablets over the next few months will probably not be effective. Last week when I had the MRI, they injected contrast. It was not fun to go through and painful. They couldn't get it into the vein properly. So I have a bruise. All I could think of was the people going on IV treatment. I still get a pain thinking of it.  

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Today I had my usual weekly blood test and was dreading going. I told the lady that took blood that it was sore last week and I had a tough time. She said she couldn't understand that because I had such a beautiful vein and added that she has seen alot. No-one has every told me that before!

Blog Entry : Counting the days 3 February 2009

I think I need to have a counter on my website. I finish radiation new week Friday. This means I have 8 sessions left over 10 days. Just counting down is a great feeling. As nice as the people are there, I am SO ready to say goodbye. I look like I have a split personality with one side with hair and the other without! I just turn the way that reveals my mood. BUT like I said, I don't have to do this again. Thank God for small blessings. I am ready for the big ones now...  I have been interviewed for People talk magazine. It is a local magazine and it will come out in March. I really have to look at it before he prints it because am sure talked him in circles! I will keep you updated  I just want to thank you all for the support and prayers. It has made this journey bearable and I have enjoyed connecting with so many people.

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Chapter 15

Booster Fiasco

One of my very good friends (read sister) Sandra has been a support and encouragement during the journey. The story of how we met, is, in it self, incredible. Something most people won’t believe. But I won’t get into the right now. She is German but stayed in South Africa for a couple of years to study and gain working experience. She is the godmother to my children. Here is her comment to the above blog entry:

Hi Deirdré, we already have February again and it's crazy how quickly time flies! A few weeks ago when you started chemo/radiation, I was kind of suffering with you....I thought how long will this still take!? And now you have "only" a few more sessions to go. I think it must be a big motivation knowing you have been strong for such a long time. I know many, many people have thought / still do think of you...I believe it has given you strength and energy. But most of all it was you who has gone this way - in a way really "alone". Only you really know what it means to be there. Now you have walked a long way and I guess you are also tired, but it is not only relieving for you to hear that chemo/radiation is almost done. Okay, no doubt, you must be the happiest person knowing things have turned into a better direction. Nobody ever can tell you life is kak (South African slang for horrible)...just because they complain

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about stupid nonsense. You know that so many people's situation is not "kak" at all...they just have not gone through really tough things. Human beings are strange creatures - so many don't value what they have when they are healthy and happy. Without health you can't do anything, nobody is able to enjoy life without good health. I am so very happy and glad that you are on a very good way of being healthy again. Please write a book about your life soon! I'd like to add some comments in some of the chapters. I am glad to have met you.

Lots of loveSandra

Blog entry : Sleepy - 5 February 2009

I think will all the busyness going on, the tiredness has kicked in. Today by 11am I was done. Went for a nap but it didn't last long because Leo came back from school. No way was he going to let me get away sleeping. Eventually he had to be bribed to play outside with Elizabeth. (Elizabeth is our house keeper and nanny. She has been working for me for about 8 years) How do I bribe him? I tell him I am going to take him to Walmer Park. This is a shopping centre! He is as addicted as I am to having a coffee (milkshake) and snack and do a bit of shopping. At least I don't have to drag him along... but the pressure!! He knows how to swipe a credit card AND even signs in the signature space (he's very meticulous - not all over) He thinks if I have a credit card, I have money! All this and he is just short of 3!

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Blog entry : Another Day - 9 February 2009

Well another day closer to finishing.  I have found that, against my desire to party, my body is not co-operating. This has become very tiring.  On Saturday, James & I went out to the movies and for supper afterwards. I decided to be brave and went to the same restaurant where I had a seizure previously. Needless to say it was very embarrassing and a real party pooper. So we arrive at 7:30pm and by 8:30 I was done. I think it might have been a bit of paranoia that I was going to fall over again. So movies must be too much for me. I came home, managed to brush my teeth in 30 seconds and crashed into bed, falling asleep just about instantly. It seems like the side effects are hitting me now. I notice the wrong words, memory short and of course the tiredness. Anyway I am keeping up the vitamins and have gone on a diet of no dairy and very little sugar. It seems to be helping. I think my tastes may have changed. This might also be mental. Kids and family are going well. We are back to the drop offs and pick ups everyday, making lunches in the morning, homework and an endless amount of events for them. James & I would happily stay at home and do nothing, but life dictates otherwise. As I am sure most parents know! Leo turns 3 on the 21st Feb, so there is another party to organise...  Sorry for those I haven't emailed back yet, its all on the list! At least there is light at the end of the tunnel!

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Blog Entry : Radiation Postponed - 10 February 2009

I am not sure for how long, but the radiation machine is not working! So I have no treatment today until it is fixed. Wow, what does that mean? I can't say I was upset not to go, even if I am prolonging the inevitable. A taste of things to come! So no, it is not 3 days to go!

This was SO incredibly frustrating. I already had to work myself up every day just to go, with my only thought being “it is nearly over”. Then I get told to wait!

Blog Entry : Booster Fiasco … - 12 February 2009

Yesterday I had to go into the hospital at 5pm as they had fixed their machine. They set up 2 smaller beams. I am having a 4 treatment booster in the area they felt was high grade. The set up was fine, it feels weird being moved around with a mask on and not knowing where in the room you are. The booster radiation was TERRIBLE! They didn't tell me that it would be a 4min straight beam from the one side and 2 1/2 min beam on the other side. My radiation has never been that long in one dose. So anyway, I am lying there and it is getting hotter and hotter. I am having an absolute panic that the machine is busted and I am going to be completely brain fried. Now,  I cant move my head or get up or talk, so I start clapping my hands and kicking my legs wildly. I know they have cameras in there and they can hear me. I am also panicking because the ladies working there are young and relatively new and only started half way through my treatment. 

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They stop the machine and come rushing in worrying that I am having a seizure! I am trying to speak via this mask and they say that this is normal for a booster and apologise profusely for not telling me. And then said I only had another 1 minute of that side and another 2 1/2 min on the other side. I calmed down a bit, it was hard because my blood pressure went through the roof! Its funny but when my blood pressure rises, I get this stupid head clicking and I feel I get dizzy. I am really worried about the effect that it is having on my ear as it keeps buzzing. I will have to chat to the doctor about that. So my last treatment is on Saturday morning so that I don't have to go into next week. I left there feeling rattled and asked James to rather take me there these last few times. It was the first time I can honestly say I was really afraid. From now on, I am really going to say I "HAD" a brain tumour. Oh and just from that one beam, a patch of hair stood up straight fell out! What a fiasco!

Comment sent by Barbara Tereblanche (my aunt who immigrated to the USA, with her family many years ago)Only in Africa! First the machine breaks down and then they just hook you up without any warning that this session will be longer and more intense. Wow Dee you are one strong lady - I would have lost it, totally freaked out.

Thank goodness only two more sessions.

I agree with your statement " You HAD a brain tumor". Way to fight the good fight.

Love you lots, Bar

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Blog Entry : Booster Fiasco II – 13 February 2009

Yesterday went much better, at least I knew what I was in for this time! So no kicking of legs and acting like a crazy woman.  In Bar's comments under the last post - she mentioned "only in Africa" That is SO true. I enjoyed watching the movie Blood Diamond for many reasons. One of those was the take on Africa. In the movie Leo says (with his really bad interpretation of a South African accent)  "TIA" This is an excuse for anything and everything. It means "This is Africa" We have found this so funny.  I had an American man ask me how many people would use the software - I said there are supposed to be about 20 users but TIA - you will be lucky if anyone uses it. When someone asks you why is the meeting late - TIA, why is no-one at work - TIA, why was there a strike this week - TIA, why does our ruling party have a host of convicts - TIA why are there people napping under the trees along the roads - TIA (this is what Sandra and Sven - my German friends - couldn't believe when they came to South Africa) Why is the radiation machine busted AGAIN today - TIA! Yes it is busted again, so I will have to come in next week. I can't pretend that a busted radiation machine doesn't bother me... Luckily for them we all know how things work in Africa. In their favour - they have treated me with nothing but professionalism and kindness. 

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Some lighter news - Anastasia went to her first "Social" last night. The girls got all dressed up. James & I couldn't help but laugh at the awkwardness these kids felt and be totally grateful to be past that stage. I can still remember those horrible slow dances where you turn in a circle or sway while holding hands. James gave Anastasia a solo demonstration, she was gagging and trying to strangle him at the obscenity of the visual. James is keeping a close eye. He know what boys are like even if TIA

Blog Entry : It is Finished! – 16 February 2009I got called in on Friday evening because the machine was working. So I had my final radiation on Saturday. What an emotional time for me. I was so happy it was all over. As I was leaving, the radiologist gave me a hug and wished me well, this gesture caused the flood gates in my eyes to open. I hadn't cried once through all of this and now that it was all over, the relief was too much. I really wanted to thank them a bit more but my throat was so choked up that if I had said more than "thank you" I would have started howling too. I felt a bit bad that the other patients waiting to go in saw this. They had no idea that it was my last one session or why I was crying. They might have thought something went wrong the way their eyes were beaming at me. Or perhaps they thought that tears squirting out of the side of my face is a side effect?  When I got to the car, James & the kids were a bit distraught thinking I was hurt. I mumbled that I was just happy and this left them even more confused. Luckily I was in the car with boys so no more questions were asked! I was asked to keep the mask for 5 years in case they need to refer back to it. I haven't looked at it yet, I just put it into the cupboard. As I was lying there for the last time, I just prayed to God that this had worked. Thanked Him for keeping me safe and that I would

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never have to do this again. I just prayed that I could be my old self again, get my life back and not have this affect me anymore.  Well I started painting again on Saturday for the first time since November.

Note! I failed to mention that my last day of radiation was on 14 February - Valentines day!

Blog Entry : Moms – 17 February 2009Yesterday, I said to my Mom that I want to retire from being a mother. What hard work. You are busy with kids all the time. It does take it out of you. Obviously I wouldn't change having kids for the world, but a break would do me good. I think of all the moms sitting (and a lot of dads) with their kids, in hospitals, with devotion.  My friend has just had a had a premature baby and it is distressing to know that he is in an incubator. We all feel the pain our children go through and want to take it away. It doesn't matter how old they get. We want the best for our children in all aspects of their life and sacrifice a lot of our own. I think we become tough when we become moms. (must be child birth!) I want to thank my Mom, I know this hasn't been easy for her. She has been supportive every step of the way, with nothing in return. She hasn't asked me for anything. I have not been able to give much back and I feel that she gives me much more than I deserve. So congratulations if you are a mom.  The world has become a better place for it.

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Comment from Sandra – My friend from Germany

Your mom is the best and you are her daughter - you deserve as much as a mother is able to give her child! Every child deserves the love of their mother. I know your mom has prayed for you the most of all of us. Being a mother means also being there for your children. You have given your mom also so much - and I know she knows it. You maybe just think that you haven't given her enough...but that's not true. Your mom's love for her children is inexhaustible. And this is good!

Love to you both.Sandra

Blog Entry : The Girl Next Door – 19 February 2009

How bizarre is life! You won't believe it but my next door neighbour,  is going for the exact same brain operation! She is LITERALLY in the house next to ours. She is going to Cape Town, meeting with Dr Butler and Dr Melville. They are doing the whole grid thing, scanning and surgery. She is about the same age as I am, has 2 small children and started having quite bad seizures during the second pregnancy. She does not have a tumour, but rather epilepsy in a particular area that developed when she was at university. No-one knows why it developed. She has focal seizures which means that she looses feeling and ability in her left hand and eye and the occasional grand mal. Can you believe that?

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Note: My neighbour elected not to go for surgery as it seems that the risks outweighed the benefits of not having focal seizures

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Chapter 16

To Do or Not to Do

Blog Entry: To Do or Not To Do 24 January 2009

That is the question…

I REALLY don't want to have chemo for 6 months (or any) . Having this break has been so nice. Granted, the chemo is one week on and 3 weeks off. I keep wondering if there is a point doing it if the tumour is low grade. My personal feeling is that I should build up my strength. (lets ignore the fact that I am justifying) If it is going to aid the radiation effectiveness, then I suppose I should do it. (But I don’t know if it will) I waited too long to go for the operation, which in hindsight (that horrible thing), I shouldn't have done. So maybe this is the same?

Today they called to confirm the appointment for the 9th March and I (terribly reluctantly) agreed.

Oh woe is me.

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Blog Entry : Yay Yay its Monday – 1 March 2009

I don't know what is more hectic, having 3 kids running in different directions or going to work. I find myself look forward to Monday, when I can have a little bit or routine and quiet!  I managed to finish my painting which has been plaguing me for weeks now. It, as usual, looks nothing like I started out. I am SO far behind with replying to emails... I feel terrible. Sorry to those I haven't replied to I am getting there SLOWLY! James turns 40 in May. I have been planning his party... really looking forward to it. I think it is time to get a long blond wig now. The last few days I seem to be very tired, dizzy and a bit light headed. It always gets better at night. This is so bizarre. I just hate having any thought about the tumour. One more week till chemo - oh man I am dreading it.

Comment from my aunt Barbara in USA

Hi Dee:

Have not forgotten you - have had hand surgery and can't type very well.

Do hope you are feeling better and that the tiredness and dizziness have gone away.

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I am praying that Chemo will be a breeze and that your body tolerates it really well. This is the last hurdle and then you are home free, ready to start the next chapter of your life.

Blog Entry : How to harm your brain – 5th March 2009

I got an email from Kelly Sonora with a link to an article she has written. Its called "25 surprising ways you

are harming your brain". I notice that many of us are guilty or doing these things (I certainly know I fall under many of

them!) Have a look, the web address is http://www.onlinedegreeworld.com/blog/2009/25-surprising-

ways-you-are-harming-your-brain/ Not much news on the tumour front - next week is chemo and I am dreading it. One of the other blogs I am following, the guy is going on Gamma Knife. I really wish I could have rather had that. He has a grade 4 so hopefully this stops it in its tracks. Sorry to hear about your hand, Bar. It is amazing how we dont realise how much we use parts of our body until they are not there! Even trying to sleep becomes a challenge! Blog Entry : So I start again – 9 March 2009

Today is Monday! My poor son (Leo) didn't have a good night. He ended up getting sick all over our bed. So today, we are both going to head down to the hospital to see the doctor. He has been so sweet and loving this week, its when I really enjoy being a mom.

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So today is the day when it all starts again. The next round of chemo. Neither James nor I want to do this, but we also don't want to look back and say "I should have" Someone I haven't spoken to for a long time, said how shocked they were when they saw my photo on facebook. I suppose that I have been so busy with this that I haven't really noticed the incredible difference in 1 year. I said to James that I just really need to get back to 'normal' now. 

Meanwhile I will keep looking up things on the internet.

There seems to be a very successful treatment that has been developed in the US. It is called a DCVax. In extreme layman's

terms, they use your own immune cells to fight the tumour cells. They take your cells, they go through a process of

"education" where your cells can target cancer cells and insert it back into your body. Its like taking a flu shot. It just shows,

we can even train our own bodies to fight for us. If you want more info go to :http://www.nwbio.com/  Love to all

Blog Entry : Ready Set Go – 10 March 2009

After quite a long consultation, we ended up where we started! All my blood counts are back to normal and generally I am feeling strong. It was good to talk to the doctor about the benefits vs risks. The problem with the chemo is that it seems to have no effect on a low grade tumour.  The chemo is only effective with a grade 3 & 4. So my last scan showed that I didn't have high grade left.

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Unfortunately that doesn't mean that there aren't some hidden somewhere.  My dilemma is that it is quite a lot for my body to go through, especially if I don't know if it will work or not. Even the high grade is only about 10% effective. I don't believe that I have a high grade tumour, but I think I need to take what the doctors say seriously. James & I both feel that we would rather take the safe than the sorry approach.  I am on full dose for 5 days with 2 weeks break and then start again. I will take the pills before I go to bed, to hopefully lower the side effects. Also I try take them an hour after I have eaten because I find that stops me feeling nauseas. What we have decided is to try it, if I find that it is too much, I will stop. They weighed me yesterday to see my dose... I have picked up weight according to them which is REALLY strange as I don't fit into my clothes!! So I thought it might just be that I have lost muscle tone, but muscle weighs more than fat? Maybe the scale is wrong? People always say I am really tiny. I don't feel small - I need someone to say to me "You are the same size as ..." then I will at least have some frame of reference! I was just starting to feel better, detoxing and feeling less yucky. Oh the thought of it again is terrible. They had to order the dose so I only got it today and will take it tonight... He says that I only feel the effects after a few days when in builds up ...wish me luck!

Blog Entry : Not a Good start - 11 March 2009

Well not a great start. I took the chemo pills at 9pm. By 1pm my stomach started shouting and I ended up hanging my head over the

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toilet in a far too intimate way. I do think that I probably shouldn't have had the host of vitamin pills I usually have before bed. I don't think the two liked each other at all.

Lessons learnt:

- Don't have a bunch of vitamin pills with chemo tablets. My grandfather says that he swallows all of his vitamins at a time and lets them fight for superiority. Unfortunately for me, my stomach lost the fight - Don't get up. - Don't take chemo tablets - Don't get a brain tumour When I woke up I felt fine. It took me a while to get out of bed but that didn't bother me at all! We'll see how tonight goes - I am hoping better. I have to admit the temptation to "throw out the pill" is seriously strong. But then again I suppose anyone who has to go through chemo has to dig really deep.  I am just grateful that it isn't IV.

Blog Entry : Quick Update - 13 March 2009

Well yesterday morning was time to chat to the loo yet again. Very irritating. So I called the doctor and he gave me some tablets to help with the vomiting. Today I have been totally fine. I worry that it has stopped everything working. I only have 2 days left so it should be manageable. James says he doesn't know what is worse! Got some painting done as I am handing in for an exhibition tomorrow.  Hope you guys all have a great weekend...  Lots of love d:) 

Deir"e Kohler

Pa# 154

An email I sent to after an evening of vomiting

Hi Dan I seem to be getting sick in the middle of the night or early morning. Did she take anti nausea pills? I am going crazy with the vomiting. I seem to do 1 – 2 hours vomiting and then I am fine for the rest of the day. Did you think that the chemo actually helped? Are things better or are you still missing Sandy very much?Thanks againD

Hi DSorry to hear you're getting so sick from the chemo. Sandy was luckier with that - she joked she had an iron gut, and I think she did. She did take some anti-nausea pills too, but I can't remember the name. And now I remember too, she liked to sip just a little 7up, the soda, when she wasn't feeling good. Something about it really works - my mom gave it to me too as a kid when I was sick.I think the chemo helped extend her life but also the quality of her last months. But because she had a grade 4 tumor, the chemo could not cure that, but it slowed it down for awhile.

I miss her more than words can say. She is in my thoughts constantly... and those thoughts are usually the only thing that gets me through the days. And I feel her presence quite often, or get a little "sign" that she's still with me, watching out for me.But sometimes I think I've gotten too used to emotional and physical pain, it's like a way of life and feeling truly good only comes in fleeting moments. But hey, at least the pain lets me know I'm still alive.

Brutal Honesty

Pa# 155

Hope something can help you get through the chemo easier, but it's rough I know. Hang in there!Hugs, Dan

Blog Entry : Chemo Finished – 16 March 2009

Well the first week of chemo is done. Thank goodness. I am still feeling a bit nauseas, but to be expected I suppose. I am so tempted to shave the other half of my head. The one side is as smooth as a baby's bum and the other side hairy! I think it will help my skin to recover. James is joking and calling me "Yin Yang" Quite amusing! I dropped some new paintings off on Saturday. I think it may have been a bit of a rush. We weren't allowed to exhibit any art that has been exhibited before or that is over a year old. I have done 3 post exhibition so that should be enough. There are many artists exhibiting, so a nice variation. Mine are huge in comparison - as usual! Go big or go home! The exhibition opens on Tuesday (tomorrow) from at 5:30pm for 6:00pm at EPSAC in Bird Street Central. It is open to the public and has a nice variation of art. There is one artist who is 70+ and still going! James says his grandparents bought some of her art!

Note on my paintings : I submitted 2 works they could only hang the one called “Sand Storm” This one is mostly cream and black and was inspired by my Egypt trip and a photo I saw of the Namibian desert.

Deir"e Kohler

Pa# 156

The painting is another abstract piece in “Pollock” style wildness. My husband calls it “Pollock on Steroids!” I get immense pleasure from the wild freedom that is my art.

Blog Entry : Catch Up - 19 March 2009

Sorry for taking long to write, the weeks just seem to fly by. After a lot of rest on Monday and Tuesday, I am feeling back to normal. I have been told by many people I must carry on with the chemo and I think that for mine and my family sake I should. As much as I don't want to. The exhibition was fun. My work is off the wall compared to most! The professor said to me that it was the most refreshing work at the exhibition. Nice compliment (I think) I don't think it is the best I have ever done but I am happy with it.  I am going to try some new things with my next one. We went to have supper and movie afterwards. Nice to do some adult stuff! When the professor gave the opening speech, he mentioned something which I found quite inspirational. He said that the artist can do their work out of 'fear or courage' This means basically (in my understanding) that you can do what you know others will like and find acceptable or that you can take the risk and do what you feel you should do. Meaning be creative and do the unexpected. I found that this is true in most things. We are put on this earth to be different. Its what makes life interesting. (Unlike "Windows" )To be true to ourselves we need courage. I am very lucky to have a husband and family that will motivate and encourage me take the risk. None of us know what is going to happen in our lives or when. It is good to have the courage to go with your heart and live your

Brutal Honesty

Pa# 157

life. I think Oprah calls it "Authentic" So I remind myself all the time that I want a long life. I need courage to go forward to "live my life " No matter what it takes to get there. The last 7 months has been hard, but its downhill from here. (stop complaining Deirdre!)

Blog Entry : Monday - 23 March 2009

Well it is Monday and time to get back into the swing of things. I actually had to think what I was going to do today, quite different as I usually have a list that I try work through. Quite pleasant actually, although I do find that my mind starts to wonder.  Last week before the next round of chemo... Yuck. James has just read Lance Armstrong's book. He is not sure if I should read it! Ignorance is bliss I suppose. I find it so bizarre that I have such a aversion to chemo after I have had brain surgery. I think its because brain surgery is over quickly but finishing chemo seems to be a long way away. I must be honest, I don't think about the tumour much. It is only when I swallow pills. Life carries on albeit a bit slower...

Blog Entry : Brain Hole Gauge – 25 March 2009

I suppose not having any drama is a good thing! I felt pretty tired last night and ended up in bed at 8pm. But then again I did spent the afternoon visiting. Leo still thinks his bedtime is at 9:30pm. The earlier you put him to bed, the longer you read stories. "Puppies in the snow" is not as invigorating as it first was! I still get treated like a bit of a baby. My Gran makes me tea and tells me I need to rest (she is 80!) I laughed because the professor at the

Deir"e Kohler

Pa# 158

exhibition told my grandparents to "act their age" when I told him they were over 80! No-one wants me to drive far or lift anything over 2kg (Leo is 16kg) I have never been a huge fitness person, but now I am a marshmallow. WHERE HAVE MY MUSCLES GONE? I think I need to act my age - a young 33!! My surgery scan has healed up beautifully and (if I had hair) you honestly wouldn't be able to see it. I use my brain holes to gauge if my brain is under pressure and swelling. When there is a dent all is good, when it starts protruding grab some omega 3 & vitamin E. A useful tool if used correctly (PS Don't stick your finger into a brain (burr) hole.) - Don't try this at home... at a friends house is better! 

I saw a funny quote on Mark Miller's blog (www.markmillermusic.org) and thought I would share it: "I think I've discovered the secret of life - you just hang around until you get used to it."- Charles M. Schulz

Blog Entry : No More Break – 27 March 2009

Well, Monday is back to the horrible chemo routine. My slogan in school used to be "Just snap out of it" So thats what I am going to do - stop moaning - and get on with it. (Well I'll try at least) I will just have to take one day at a time. I really wish the treatment could be more dynamic. (Shorter) It still feels a bit barbaric to me. Chopping your head open, frying your brain and then swallowing poison. Weren't these things your mother always warned you against?   

Brutal Honesty

Pa# 159

I am itching to paint but it has proven difficult between busy days and tiredness. But I am excited to start the next one. I would really like to be commissioned to do a large work(s). Well its my brother's and father's birthday tomorrow so yet another busy weekend on the cards. Next time I go on 'holiday', I am going to book into a cabin and eat, drink, read and sleep.

Blog Entry : Busy Monday - 30 March 2009Well seeing the doc and getting the next round of tablets. Today the chemo room was so busy! I don't know what is going on there! I had to queue to have my blood tests.

James' Gran had a bad motor accident which has left her in ICU. He spent 31/2 hours in hospital with her. There is always a book of paper work. Leo was screaming with toothache today so he has to go to theatre. I am so cheesed off because I took him a month ago to see the dentist. He said I need to book sedation. Although I called twice they never made a booking. Anyway I called today and they said they can only fit him in next week. I don't know how a 3 year old can wait for a week! I am pushing to get him in sooner. The Kohlers seem to really be supporting hospitals these days! James has become the paramedic, doctor, health care worker and who knows what else! Plus he still finds time to be an architect! Will let you know if I manage to keep my food down this time!!

Comment: James’ granny did pass away during that year after 3 months in ICU. She was 86 and had led a full life.

Blog Entry : Terrible Tuesday - 31 March 2009

Just when you think you are managing, things come back with a vengeance. Last night I spent 2 hours hugging the toilet. It was

Deir"e Kohler

Pa# 160

terrible because I couldn't keep any anti-nauseas tablet down. He had given me something milder to take and that definitely didn't work. Eventually when I couldn't get anymore out, I managed to hold down a zofran and slept till I came to check my mail / bills (It is still the end of the month!)

I am feeling better but really don't want to have the stomach issues. It is such a vicious cycle. The doctor says that if I manage well, he will up my chemo to be 150% my body mass ratio- I thought I was on the maximum dose! What does it mean to manage well? Must I be rolling around?

Blog Entry : Better Thursday – 2 April 2009

Well on Tuesday night, I took a Zofran. It really did help. I managed to function as a normal human! Yay... Today I was a bit more tired and managed to sleep for 3 hours this afternoon. Luckily started moaning or I would have forgotten to fetch Adam! I am glad I am not working, I honestly don't know how I would cope with the kids, work, house and chemo. I complained bitterly to my doctor on Wednesday. His response was a standard "I understand" Not quite sure about that. I keep worrying what this is doing to the rest of my body. I have been extremely bad with cooking this week (not much has changed!) Tonight is pizza for the family. I do force them to eat fruit to curb my guilt somewhat. (Anyway last night was fish!) I will actually end up having some form of cereal because it is less hectic at night. (Don't you envy me)  Bon Appetite!

Brutal Honesty

Pa# 161

Blog Entry : Still Sick – 7 April 2009

It really sucks to have flu on top of chemo. I went to the pharmacy to ask what I could take and they said nothing, I should go see a doctor. Well I called my doctor and he said I can have the normal flu stuff. Thank goodness because I avoid the GP at all costs. The long queues and the vague answers are too frustrating. I prefer to look on Google. I should be in bed but I am SO tired of staying in the house that I have to keep myself busy. It doesn't last long. James moaned at me last night saying that I need to accept that I am sick and build up my strength. I am just not sure how to do that. I am scared of what the future holds. I was watching a programme yesterday on how some people live to over 100 years old. I realised I could have done more towards reducing my stress and keeping fit and healthy. Hindsight is a terrible thing. I think anyone who gets cancer, it must come as a great shock. How and why did our bodies do this... Some people seem to carry on as usual with chemo and I don't find that easy to do. I have a goal -  that is to get my body strong again. Do some exercise and build up muscle. Of course this will have to happen after chemo.

Blog Entry : Chemo Barbie – 9 April 2009

Some of you may not appreciate the joke, but James & I had a good laugh. When we first met, James used to give me Barbie nick names like "Combat Barbie" "Business Barbie" "Coffee Shop Barbie"

Deir"e Kohler

Pa# 162

etc etc The other day, while I was putting on my pyjamas, I noticed that I was wearing pink pyjamas with a floral edging, a pink jersey, slippers and a dark pink bandana! I couldn't help but chirp "Don't I look a bit like "Chemo Barbie" "

I don't know if you have noticed, but in my tags, I am referring to the tumour as "ex brain tumour" d:)

Blog Entry : I want my life back – 14 April 2009

This past 10 days have been a bit rough with the flu. I seem to be getting out of it slowly. Its hellava frustrating. This is my last week "off" and then back to chemo next week. I am hoping for a few days of "feel good" I am so incredibly frustrated being stuck at home. I go out but only seem to manage a couple of hours and then I have to go lay down. The tiredness is quite debilitating. What I really want to do is spend a night out on the town. On Sunday, I had to have 2 naps. I was so dizzy that I thought I would pass out if I didn't. I have started to notice that my memory and concentration is dwindling. James told me a story this am... About a year or so ago, he encountered someone who had a brain tumour and was under going oxygen therapy. Well he has since died. What they have figured out is it doesn't work. So I suppose I should therefore be happy having chemo & radiation (oh yay) I know that I am moaning alot, I think it is my impatience and NEED to have this OVER. I don't believe that there is anything wrong with me which makes it even more difficult to deal with. That is why I prefer to call it a brain tumour and not cancer (still don't believe it is that) 

Brutal Honesty

Pa# 163

Comment on the blog entry from Sandra in Germany

...YOU will get your life back...that's for sure!

Blog Entry : Toxicity - 15 April 2009

The second half of this week has been good. Last night I went out for supper with friends, tonight friends came over and tomorrow we are going out again with more friends. It is good to catch up with others. I don't want to complain all the time, it is just not someone I like. Next week it is back to chemo. I have decided that I will not take a tablet until I have had a toxicity test. This is because I have been on anti seizure medication for 3 years and they have never checked my toxicity levels.  Basically your levels build up over the years. Adding chemo to the mix puts alot of presure on the liver. If my toxicity levels are too high, it causes symptoms like dizziness, fainting etc - almost like having some sort of seizure. I have been a bit worried because I seem to have this, but then it could just be the flu... I would rather be safe. Of course I am not sure if my doctor will listen! I have admitted defeat when it comes to doing the chemo - BUT it doesn't mean I want to do it. Call me a wild horse if you want!

Blog Entry : Art Article – 16 April 2009

I was very honoured to have an article of my life and art in the People Talk magazine. It is 2 pages long. Yes the picture of James & I is pre-no-hair! But don't worry will get there again! You will see that James took an ad on page 2 and that is one of the buildings they are completing. (I know I am biased but I think it looks great)

Deir"e Kohler

Pa# 164

Blog Entry : Hair Growing – 17 April 2009

My hair has been growing bit by bit from 6 weeks after the radiation. I had no idea that it would happen so quickly. It is just growing in patches and I think the area where they did the booster is going to take a while. The other day, a young cousin, staying with us, was talking about scars. He firstly didn't realise that I had a wig on and secondly didn't expect me to whip it off! It was very funny to watch his expression. I showed him a real scar!

I did a number 2 (very very badly) on my right side of my head because the hair was growing too fast. So that side looks relatively normal. Then on the left side, I have patches that are growing. The areas growing a still a bit thin and soft but definitely there!

Blog Entry : Good news – 21 April 2009

Well today I went for my check up before I start the next round of chemo - and I got GOOD news! Well as good as it gets for chemo I suppose. They are going to extend my break to 1 week on, 3 weeks off! YAY. Its because I just don't seem to be getting over the flu. I am also excessively tired. This will make my time off longer but extend my treatment time. I think its better for me to have a better quality of life during this time.

The lady administering the pills asked me if she shouldn't keep them till next week in case I take them by accident this week. I assured here that there is NO way I will take them by accident and she is not to worry! (Duh)

The other good news I got is that I have been commissioned to do 4 very large paintings for a new office block. There will be one on each

Brutal Honesty

Pa# 165

floor. Its very exciting to have a little project! I went to go look yesterday and I now need to come up with a concept / theme

Having these extra "chemo free" days has been wonderful. I discussed with my doctor and he said that I can take the next round (the one after next week) after James' birthday. This way I can feel my best. At least I can negotiate with the guy. Basically I will have 5 days of chemo once a month.

Blog Entry : Grandad - 24 April 2009

My Grandfather went for a MRI yesterday. He has suffered from headaches for years and they seem to be worse lately. We were all curious to see the cause. He has a few spots that they think are just degeneration due to ageing. If the spots occured in a young person then it would be a problem. Personally I think that it is due to swelling. He is as astute and fit as ever. The spots (in my unprofessional opinion) seem to be outside the brain along the frontal lobe. It was very interesting to have a look and compare with mine. I have always felt that my (ex) tumour could be genetic as well as hormonal. This is because it is quite common to have a degenerate 1p & 19q chromosome in oligodendrogliomas. My Grandfather remembers the day this headaches started when he was 40. This could be (again my opinion) when men's testosterone levels drop. I think my doctor may get a bit irritated by all the questions I ask and the research that I do. I am of course fighting for my life. I look at what my body is going through and feel that all of it is relevant. Doctors don't seem to agree. My tumour problems definitely came about during my pregnancies. I also feel that the stomach problems

Deir"e Kohler

Pa# 166

I have are linked. I have spoken to a few people who have had a tumour and they say they experienced pain in the abdomen and that is why the focus was not on the brain. I personally think that doctors should be able to at least look at illness holistically, I do believe our bodies talk to us and we should listen. Needless to say, I feel my Grandfather needs to be able to get rid of the headaches and the doctors should somehow help to at least stop the headaches. At least he is fine, we don't need two brain tumours in the family!

Brutal Honesty

Pa# 167

Deir"e Kohler

Pa# 168

Chapter 17

Angry & Frustrated

Blog Entry : Angry about Chemo – 27 April 2009

Last night I felt so incredibly angry. So needless to say my sleep was broken. I think that knowing I have to take the chemo tablets again today, coupled with the fact that I have felt good this past week, made me resent what is to come. Luckily today is a public holiday so I didn't have to get up early.

I know that I will see it through but I feel like I am doing it kicking and screaming like a wild horse that won't learn. Plus this feeling of anger/frustration - whatever - seems to hit me out of nowhere with a massive punch. This morning I feel ok again. I also know that I can stop at anytime - its my choice - I am not sure if this is a good thing to know.

I still have these huge bouts of tiredness. I can be feeling fine and then suddenly, its like my body goes into shutdown. On Saturday I slept for 3 1/2 hours and still went to bed the normal time. (It did feel good)It is actually amazing what I can sleep through - the plumber was banging in the ceiling because the geyser blew, kids were playing, Leo was shouting, TV on - and I slept!

Brutal Honesty

Pa# 169

I am not sure why I fight so much with it. I still think it is because I don't believe this thing will kill me so all of this effort feels petty (Its hard to explain really) I also refuse to believe that I am anything but normal... as you all know! I do suffer from memory loss - but I can't remember what I have forgotten so it doesn't really matter! :)I have decided that this year I am going to make it more about me - getting better and discovering what is important to me. I am not going to pretend that I can do everything I used to (or even that I want to do them) I have help and I am going to use it. It is time to look at my life and ask where am I meant to be. I am so blessed to have so many family and friends supporting me. My life seems to be moving in a totally different direction and I think that I should stop fighting the tide. I believe we get lessons in our life and if we don't learn from them, we get to take the class again. I don't want to go back to brain tumour class - thank you very much. I am a person who enjoys logic & order. I don't like vague answers (which seems to be a doctors favourite trick) I might get upset, but I would rather know what to expect. So I have always wished that God could send me little answer boxes from the sky. (Not that I would always want to know the answer) This would give me a clear course ...So if my little box arrives at your house - please be sure to let me know. Until then, I will have to figure it out myself :)

Blog Entry : No Problems – 28 April 2009

Last night I took my chemo tablets after I had taken the Zofran earlier. I didn't get sick (bonus) My doctor told me to just take the Zofran in the evening and a laxative in the morning. Woohoo! Its like killing your battery every night and jump starting it in the morning.

Deir"e Kohler

Pa# 170

 My sleep was very broken. I have been having these strange memory recalls. Things I didn't remember are now coming back to me in flashes. Its odd. I have no emotional attachment to these memories, so they don't scare or upset me. Today at 12, I was completely snapped (our slang for tired) I had a 45min nap but compared to my normal needs, wasn't enough. I did feel nauseas this afternoon. I had a smoke (don't tell anyone) It helped with the sickness and woke me up a bit. So now I am cooking for the family. Other than that, all seems to be on track! Yay - Grin and bare it

Blog Entry : Retail Therapy – 29 April 2009

It is quite distressing watching your body disintegrate into cellulite. I can feel the flab all over my legs and it is not attractive. It is amazing how, within a day or 2, you can notice the effects chemo has on your body. Small little spots appear, your skin dries out ... blah blah blah But to top it -drum roll - I started getting my infamous FLU! Yes Please! So last night I woke up to blow my nose one billion times. (Is there a Guinness record I can enter) Luckily Leo didn't let me sleep in this morning - or I wouldn't have been writing this right now :) Anastasia & I went for some retail therapy yesterday - She was exhausted after our shopping and waiting in queues. I have to say "The bank - Aish - She is slow" - TIA (You have to be South African

Brutal Honesty

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to understand that saying) Some little lady said it was faster when they did it by hand. Our neighbour is from the US on business with GM. They are staying here for about 2 years. She attempted to go to the bank. I warned her against the perils associated with actually walking in there. My suggestion is to somehow find a number that is not a call centre and phone that person. At least I know that when I am finished waiting in the chemo queue, I can go back to normal. It is as slow and frustrating as working in Africa. However, with the breaks, I notice my body improving. My hair continues to grow back and although my memory is a bit shot - I can remember my name! (And I still call my husband's name at night) So things are getting there slowly. (TIA) And this time I must make sure I have a direct line to God so that I don't have to wait for a response!

Blog Entry : 3 down – 30 April 2009

Well I have swallowed 9 HORRIBLE little pills and have 6 to go... Only 2 more nights left - YAY If anyone has serious diarrhoea use Zofran - IT WORKS. So well that nothing works. This idea of taking a couple of laxatives in the morning is stretching... Last night I took half a tablet of Zofran and fortunately I still feel fine today. I think that the 2 previous days of Zofran are still doing the job. I am really scared not to take a tablet because I wouldn't like that 3 hour throw up episode again. But so far - all is good. I was also taking these detox tablets, which I stopped 3 weeks ago. I honestly think that I feel better because they aren't interfering with the chemo tablets. (ie being toxic is better than not) I have done a few things differently this time around. Like I said I cut out detox

Deir"e Kohler

Pa# 172

stuff, I only have 3 vitamin tablets now - Vitamin E, Mixed, Omega 3. I have not always taken my full dose of anti-seizure medication. I take 2/3. I think this has all helped my body to cope with the chemo.  I try cut my sugar down - BUT - I have been craving SCONES - seriously. With apricot jam and thick cream. It was so bad the other day, James told me to get up and go to the shop. Sometimes I substitute this for donuts (which Leo calls a Go-nuts) I am also trying to cut down dairy intake because I am lactose intolerant. This is also hard because I really enjoy cheese. I bought soya milk the other day and my tea didn't taste good! There is no way I can radically change my diet. We all watch these TV shows where obese people loose huge quantities of weight and then pick it up again. I have always believed that you can eat / drink anything as long it is in moderation and according to your needs. What I have done is eat a lot more fruit and salads. I can't face cooked vegetables (my kids are happy) I don't stop myself from enjoying things, I do see if I can substitute it first. I feel that I eat well and I am well aware of building up my strength and keeping my fluids high. Last week I had a glass of wine. It was good to enjoy eating and drinking and being festive with friends. Its one of the small pleasures of life and I am certainly not going to let this tumour stop that.

Blog Entry : Married again – 4 May 2009

I can't believe how much has happened in the 5 years since that day... James became a husband and dad of 2... and then Leo (who is 3 years old already).

Brutal Honesty

Pa# 173

The older kids look so young and tiny. James adopted them, Anastasia is in High School now and looks a lot like me! Adam is a model child and excels academically I started consulting independently (so I could work a bit at home from when Leo was born)I travelled around South Africa for 3 years for work (including while pregnant)James got to design his own home which we built. (while living in it) We really stretched ourselves.We have gone overseas and visited 5 countries (plus local holidays)I have started paintingJames has had big changes in his business.We bought land out at Lake View, which my folks have already moved onto, that James is developing into an estate.James is trying his hand at wine makingAnd of course I was diagnosed with a brain tumour.I still love James as I did that day. I don't know how I would have coped if he wasn't around. I look back at what we have gone through and achieved as a couple. I have to thank God for bringing him into my life! I am so grateful that I don't have to journey through life on my own.

Blog Entry : Have a little faith – 6 May 2009

I have this (almost superstitious) way of thinking when it comes to attitude about life. I believe that we have been given power in our words and we should not "will" negative things into our lives. This means, don't say stuff that you don't want to happen to you and say good things that can enrich your life. James & I argue about this because he says that he is being "realistic" about the future issues - Its kind of like having a big "The end is nigh" poster in our house. 

Deir"e Kohler

Pa# 174

I am specifically referring to our global market recession. It is affecting all of us, big and small. I don't know of any couple who could comfortably say to me that they are continuing as normal. It is something that James & I have to address, as I have not been working for this time which has added to the knock. We should look at it, address the risks and come up with a plan of action. (Very important) When we have done what we can, let it be. We all know that worry can make us sick. The point of this post is to say that I believe we should be putting a little bit of positive talk into thoughts, conversations and actions. I don't see why we should only make the effort to be positive when we get sick. We should be that way about everything in our life - especially the good stuff. I don't mean ridiculously cheerleader positive. Just have a little faith and express it in your life...

Blog Entry : What’s Next – 11 May 2009

I am by nature an impatient person. I wish I could go for a scan to see how things are doing up there in my brain. It does seem strange that they rush you to do everything and then you have to wait for six months to see if it has worked. I know swelling... So far, I am feeling good. I shouldn't have stayed up till midnight watching movies - very bad idea. The "bag eye" look is not fashionable this season. I asked Leo (rhetorically) if he wants to bath and he said "No thanks Mom, I did already yesterday" I feel the same way! Mothers day was good. Adam & Anastasia made me scones served with tea in bed. They know I have a thing for scones at the moment. Then we all went off to the farm ... I can't believe how busy the past 6 weeks have been. 

Brutal Honesty

Pa# 175

Blog Entry : Decide to live - 14 May 2009

Today was a success. It turned out far better than we thought. The main meeting is tomorrow, today was more of a scouting operation. My mom has been doing a lot of praying and we have had many answered prayers. I have always believed that God has a plan for us and we need to trust where he is leading us. Today I met up with a colleague that is having a cancer scare. Others are having serious health /emotional challenges. I realised that we all have issues to deal with. Before I just didn't notice them. Now I know it is what makes us human. It is not our perfections that define us, but our imperfections. People need to connect, but most of us are too scared to let others know our struggles. We think we won't fit in if we have faults. We want to look and act airbrushed - like what we see in the magazines.  Many young people are getting sick. Our jobs are stressful. We haven't been taught how to manage it. Men seem to, on average, manage stress a bit better than women. So many women are denying that they are females. Women's bodies work differently. We cant shut down as men can. This is not to say that men don't stress! I have always tried to balance my life. I don't, however,  balance in my work. I need to look and balancing my day while at work. This means that if I am not coping, I must listen to my body. Slow down and accept adversity. We all have talents. I believe we should use them, just don't kill ourselves in the process! I read a book "Veronica decides to die" Basically she decides to kill herself. When she survives, she is sent to a mental institution. There the doctor tells her she has a terminal illness. Hearing that, she escapes with a boyfriend to live it up in her last days. The doctor

Deir"e Kohler

Pa# 176

lied, he gave her a purpose to live. Dying is going to happen. Lets not wait until it gets close before we decide to live. Very "deep" today!

Blog Entry : Manic Monday – 18 May 2009As you may have seen, I haven't been on my blog for a couple of days. Friday was hectic. Travelling, flights, meetings. By 3pm, I said that was me and waited in the lounge doing NOTHING. (Being a slob) I think I must look helpless because people are always wanting to carry stuff for me (even my Mother), fix things, open jars, make me tea ... the list goes on. Not that I mind them doing it, it just makes me think I look weak. Or maybe I look like royalty - yes I think it is that.  It felt good going there it felt like I am back to normal. It is also good for people to see that I am OK. The weekend didn't slow down at all. This morning, trying to get Leo to school was a REAL challenge. At least wrestling him was exercise for my biceps. I haven't felt sick for awhile now. It is great. I have really taken it easy as far as eating is concerned. I am not as harsh on myself with diet and pills etc. I have cake & a glass of wine now and then. The thing that is irritating me immensely is my memory. I forget names in 30 seconds of meeting someone I loose track of what I was saying, mid sentence. When I am seeing a client, it can be scary. Yes I know people say that is normal - comes with old age. I don't think 33 is THAT old! I have to keep asking James if I have told him something before, or I just forget to tell him at all. I think that is why I have to ask him every night if he loves me.

Brutal Honesty

Pa# 177

Blog Entry : Seizure – 20 May 2009

Yesterday I had a seizure. Luckily not a grand mal, but none the less, a seizure. On Monday night I was complaining of abdominal swelling and pain. Anyway, after a rushed morning, I went to the office to catch up on a few things. Within an hour, I started to feel a bit dizzy. I just ignored it. I was chatting to someone on the phone and could feel my words starting to disappear and get mixed up. I didn't know what to do when I couldn't answer, so I just slammed down the phone. Luckily I get enough warning to do something. I walked through to James' office and he knew by the way I looked at him that I couldn't speak. I sat down and felt my ears ring really loudly, I couldn't see for a bit and then the noise went down. I still battled to speak. I would "loose" or choose the wrong word. All in all it was probably 10 - 15 minutes and then it took me recovery time. Anyway James drove me home and I fell asleep in about 10 min and slept for nearly 2 hours (it was only 11am when I arrived at home!) By the afternoon I was feeling better, although I still had a headache. I was so upset that it had happened. It is really irritating to have your day just taken. I know what my triggers are for a seizure and I had had the abdominal pain the night before. I hadn't had any of my other triggers. So anyway I went on the internet, because I am convinced this is a trigger / aura. And what do you know? YES there is one - after 3 years of mentioning this to doctors. It is called epigastric sensation. The seizures linked with that almost pin point to me.  We I have done a whole collection of links and I am going to put it all together to take to my doctor. As I mentioned before, my body reacts in the same way all the time. I am sure it must be linked and this is important because I have a life threatening disease.  Maybe I

Deir"e Kohler

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watch too many episodes of "House" because I believe that a doctor should help heal the problem and not just prescribe medication for the symptoms. Or maybe I am an "Internet Hypochondriac" - so what! I also know that I need to (reluctantly) admit that I am going through alot and I can't push myself beyond where my body can cope. Anyway - good news. JAMES TURNS 40 TODAY... time for the "filthy fourties" (he has had some training!) Leo made us blow candles and didn't know why there was no cake. We are all looking forward to his big birthday bash next weekend. I am chatting to the DJ today to make sure we have some "old music" (80's!) It is a nice reason to celebrate!

Blog Entry : Toga Party – 21 May 2009

We are really excited about this party. I have got costumes for all of us. James is Caesar and I have got a Cleopatra, the kids have nice ones too. Alot of people are worried about what to wear. The women didn't actually wear togas. Just a long dress with rope. A toga is easy, it doesn't have to be over your whole body, just thrown over the shoulder. Put some jeans under if you feel uncomfortable. Also, you can have a toga in any colour. Its fun to get into the spirit of things.

Between James' work schedule yesterday and us forgetting his cell phone at the restaurant, he didn't get to answer many calls - but KNOW, he did get them. Thanks very much!

I was fine yesterday... YAY! My Mom asked me if I can really classified myself as "disabled". In SA (and most places) if you have epilepsy (like I have from the tumour) you are classified as such.

Brutal Honesty

Pa# 179

Now although I don't get it bad like a lot of people, I still have it. On Tuesday, I thought to myself that for that very reason is why I am termed "disabled" If I have a seizure, it affects my work and basically I can say goodbye to the day. If it is really serious, it can affect my performance for a week. I had to watch my speech yesterday. Not being able to talk is quite scary.

Now, as much as I don't like the word "disabled", in South Africa it has a good side. Yes, you can get better job opportunities because there are quotas of how many disabled people should be employed. As a business owner you get 'points' towards obtain contracts. On one of the contracts, I had to laugh because they were missing some of their targets for quotas... The were looking around for "get me the guy with the hand" One of our colleagues was born with a malformed arm. It is on the left side so makes relatively no difference.

I don't feel disabled but it is nice to know that we can still and are encouraged to perform in society. I have to explain to people, what to do if I have a seizure. A lot of people are ignorant. I am ignorant - watching people have seizures scares the hell out of me.

Blog Entry : Doctor Visit – 26 May 2009

Well back off to the doctor today to have my check up before I start the next round of chemo... My eosinophils are high, as usual, which means that I have a lot of histamine in my system. I have been researching this and this can case serious problems ranging from stomach to intestine to others. It is caused from allergies - which I have had my entire life. The body produces too much histamine which causes swelling and can cause cell damage. There are some

Deir"e Kohler

Pa# 180

links to brain tumours - but I haven't researched it enough yet (believe it or not!) I spoke to my doctor and said to him that I keep going around in a constant loop of problems. He has agreed that we should get to the root of the problem. This is going to range from diet to allergies to seizures etc .I going to see a dietician. But he did tell me (something I know) - LESS sugar... which for me means no / less CHOCOLATE - No please not that! I will also need to test my dairy... My liver is all good! So obviously the couple of glasses of wine have had little effect. YAY! I start the chemo next Monday (after the party of course) I am only half way... Boo Hoo :( So far I am feeling good - other than the odd bout of tiredness - all is well. The costumes for the party are going to be interesting indeed! I only have to organise the decor and then we all ready to party!

Blog Entry : Dietician Feedback - 28 May 2009

Tomorrow morning I am going to the Dietician to see the best way to manage my problems. I am dreading the nothing "sweet in the diet" I have decided that I am going to ask her for a "real" plan that I can implement in my home for all of us to use. I really don't want to have to make 2 - 3 different types of meals. I would like it if Leo could have a better eating plan. Feeding him is so hard because he is fussy and has an incredibly sweet tooth like the rest of us. Seeing as though cooking is not my interest or passion - it is really hard to put effort in everyday. I have found a great little deli that

Brutal Honesty

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does home type meals. I will see what the dietician has to say about that.  James seems to breeze past health wise - I think that I am quite healthy and yet I sit with a bevy of issues. Yes I know life's not fair - so of course he has to slow down chocolate too - (well lets try at least) The arrangements seem to be falling in place for the party. I am really looking forward to everyone in their costumes! The spear was so huge I had to put the back seats down to fit it into my SUV!

Well I had some "different to expected" feedback... It was not too far off from what I am doing already. A surprise is that the diet won't use roughage... Yes - no insoluble fibre - only soluble (that is the "soft" food) She thinks my system has had too much pressure and needs to be treated like a baby's (in my interpretation) She has also told me to cut out greens? I am SO not complaining! She will cut sugars but not take it out completely. This means juice (even if it is pure and only has fructose) must slow right down. Many laxitves contain alot of sugar / sweetener, so that needs to go. She said scones are ok as a snack because they don't have alot of sugar (OH THANK YOU!) She agreed that diet / digestive issues can trigger seizures (I know I wasn't nuts)

Deir"e Kohler

Pa# 182

Blog Entry : Toga Party – 1 June 2009

Well, I have to go fetch my chemo tablets today and cant deny that I woke up quite depressed about it. Not only am I worried about what to expect tonight, I am tired of it. I have to keep reminding myself that it doesn't last long... I am going to try half a Zofran, I am just praying it is going to work. Getting sick is really not on my agenda today.  We had to rush Leo off on Saturday morning (7:30 am) because his chest closed up completely. I was cleaning the venue and collecting the things. Leo has had this before, his gets into a spasm and his breathing is really short. He is totally fine now.  We were hoping to sleep in, but got an afternoon nap anyway. The party was great. We ate, drank and partied. We have the photo's to prove it! Here are a few, I am still busy downloading and getting some from my mom.

Blog Entry : Chemo Postponed – 2 June 2009

I went to fetch my tablets yesterday, to no avail. I can't say that I am upset that they didn't have the tablets in stock! They have just moved to a new centre and the pharmacy is busy stocking up. Needless to say, it is a bit of organised chaos going on there. People with drips, nurses running around and the place is almost impossible to find. They need to send my tablets down from JHB. So I didn't have to take tablets last night (yay) I should get the tablets tomorrow. (Wednesday) As we were standing in the chemo room, James was

Brutal Honesty

Pa# 183

looking at some of the patients (there seemed to be a lot of men yesterday) and said "Isn't it crazy that they have to poison you to heal you?" I would agree. I am doing this with such a heavy heart, every time I go there I want to cancel. I know what it is doing to my body and I just hope that it is having some sort of effect on the low grade tumour and all of this is not an exercise in futility. You have to be strong to go through chemo. I am aching to do a scan and see what the past 4 months have been doing. Anyway, I forgot that Friday was the end of the month, with so much going on at the party, that I forgot to pay school fees! I had a call today and got straight onto the internet! (very embarrassing!) I thought my bank was looking good! Well I have alot to sort out today... before I sulk tomorrow! 

Blog Entry : Diet Plan – 3 June 2009I got the diet plan and it doesn't seem too bad. I have never been able to follow a diet. I find when I am on a diet, I think about food all the time. So what I will do is just make sure that the foods I have in my house are on the list, so when I eat, I am eating what I am supposed to, at the time and quantity I need. I usually have a snack in the morning and breakfast at about 10 - 11, for example. I am not far off on my portions, so I am not going to count out "one cup of potato" Please note that this is not for everyone, but has been formulated based on my current needs, weight, height and medical situation. I am not at all suggesting that this diet will help anyone with other serious problems or problems similar to mine. (Unfortunately now days we have to say this!!)So now I am going to fetch a few of the ingredients needed for my diet and particularly for the crumpet recipe!

Deir"e Kohler

Pa# 184

Chapter 18

Eat, Drink and be Merry

Blog Entry : Eat Drink and be Married – 4 June 2009

I have always enjoyed Ecclesiastes ... To many people it seems depressing, he is pessimistic and says that all is futile. My interpretation is different. I think he is saying, life is not difficult to understand. We are trying to complicate life but actually it is not complicated. We spend our life fighting for things that are futile and somehow, miss the real meaning. Ecc 8:15 So I commend the enjoyment of life, because nothing is better for a man under the sun than to eat and drink and be glad. Then joy will accompany him in his work all the days of the life God has given him under the sun.  I think that when you have a serious illness, you realise this. As I have said before, we shouldn't have to wait till we get to that point to have to change our thinking. The reason I felt I should speak about this today, is partly due to the party we had on the weekend and partly due to seeing how many people aren't glad. It is a hard one, but hell, life is short, we should find any excuse to celebrate. You will see that work is mentioned, I believe that we can get much joy from fulfilling our purpose in life. My Grandfather always says

Brutal Honesty

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that life is only about relationships (he is right) - so lets eat drink and be glad with them! I still haven't got my pills, so I will reluctantly call them today to find out what is going on. James & Leo are sick and I am not far behind. Maybe its a sign (Now I am hoping) James' view on the meaning of life : Eat, Drink and be Married! (I like that)

Blog Entry : 60 Years – 4 June 2009

Thanks Divina for reminding me to put something on. My grandparents have been married for 60 years and have been an inspiration to us all. After all this time - they still love each other. Eat, drink & be married!Well done!

Comment left by Davina Pugh. (She is a relative and has been a regular follower of my blog and constantly encouraged me)

I had the true honour of wising your grandparent’s happy 60th wedding anniversary today - not sure I will EVER do that again in my life time. They have lived life to the full and still do. I asked Frank if he was as stiff as I was after dancing on Saturday and he answered 'No ways I am dancing fit' - how's that for an 82 year old ! Put me to shame !LOl Davina

Deir"e Kohler

Pa# 186

Blog Entry : Chemo tablets arrive – 5 June 2009

Well my chemo tablets arrived today. Apparently they had to be couriered from the US. There seems to be some sort of political thing going on with some pharmaceutical companies on strike. Anyway they are here now and Dr Dupper said I can start on Sunday evening. Yesterday I called Dr Butler (neurologist) to discuss a few things. I asked him when I could have a scan and he said I could have one in July as the chemo doesn't really cause swelling. I asked him about being on chemo when I have a low grade tumour and he recommended that I do the full treatment. It just made me a bit depressed to think that I have to be treated so seriously. I was hoping he would say I could stop now.

Blog Entry : Taking tablets again – 8 June 2009

Last night I took my 220mg Temador. As usual I am not happy to do it. I didn't get sick but don't feel great today. My chest really hurts, I have a stuffy headache and my lower back seems to be cramping. Don't ask me what is causing it, I don't really want to find out. I am telling you, seeing doctors can really make you paranoid. Every mark, cough, nose run, you wonder what is next. I have come to the conclusion that I cannot go to the movies anymore. Both times I have felt as though a seizure is coming on. My eyes start twitching. After 20 min in the movies, we had to leave. I had to try prevent anything happening. The sound is too loud and the light flashes too much. 

Brutal Honesty

Pa# 187

So lets see what today has in store, no plans really. I have few to-do items but pretending they don't exist. I have finished 2 paintings - which I am really happy about. I want to go see what it looks like on the wall in case I need to make a few changes. I am thinking and praying for everyone going through financial stress from loosing jobs. It is weighing heavily on my heart.

Blog Entry : Treatment Going Well : 10 June 2009

I can't believe it, but the last two days have been totally fine. I woke up feeling normal both mornings. I only took half a zofran and tonight I am going to be brave and not take any. I have to try sometime. I know when I was on half dose, I never used to take zofran. I don't know if it is the diet (I am gradually getting into it). I have figured out that I need to go to bed on an empty stomach. I have a bit of plain yoghurt and rooibos tea about an hour before the chemo. I have been on mixed emotions - happy that the chemo is going well and sad that I am in this situation. I had to ask my doctor for a report for my 'serious illness' Insurance claim. To get approval from insurance company, the report is perfect. To read it is not great for my self esteem. Looking at it in writing has made me realise that this is going to be a long term battle and my life, although I haven't fully thought it, has changed in every aspect. (Like I have said before - I am slow to catch on!) So, my struggle this week has been emotional. It is realising that this has and is going to change my life and continue to do so. Its not a great thing to be hanging over your head! (so to speak :) )

Deir"e Kohler

Pa# 188

Blog Entry : Rough Day - 11 June 2009

Today wasn't great. I was really tired, but I think that Leo had something to do with it. I wasn't brave enough to ignore the Zofran and took half a one last night. I am feeling quite nauseas but that might be because I actually can't eat anymore food as the system is slowing down dramatically. Well its the last round tonight...of course till I have to start the next round. I am looking forward to having my next scan and my hair is nearly fully back. Hopefully it will be back by month end.

Note : My hair would grow back in patches just as they fell out! The booster area (around my left ear and stepping back about 7 cm ) was really “tough” and took a very long time to grow back. To this day it remains thin and curly!

Blog Entry : New Hair – 12 June 2009 

I am feeling so much better today. I think it is knowing that I have finished another round of chemo. Also... I got my new wig and think it is great. It is so similar to my old hair style. It is just a bit more red then I was hoping. But they didn't have the other in stock so I settled for this one. (apparently it takes months to make) The hair is so soft and feels real. It blows around. I really love it. Now we know how the movie stars do it! ...Well done revlon!

Blog Entry : Project - 16 June 2009

Yesterday I staying in my pyjamas and did some work. It felt good to not have to rush anywhere. (The kids didn't have school) I got a few

Brutal Honesty

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things done for a family project. We need to be innovative in these times... I tried to get hold of my doctor yesterday, to find out if I can get the referral to have an MRI. He is also having a long weekend because of the public holiday today. I will call him tomorrow as I want to have one next week. I am very curious as to how it is going. I have a few things planned for this week which is good. We have to have a reason to get up. I do have a bit of a wheezing chest, I think it is from the chemo. Since I have a couple of weeks till the next round, I am not too fussed.

Blog Entry : Scan booked – 26 June 2009

When I had the last debacle with the pills last month, they had booked my next appointment with the doctor and my start date for the next round of chemo on the 1st July. But I had to wait longer and only ended up taking the chemo tablets on Sunday 7th June.  I see the Doctor and go for my MRI on Wednesday 1st July. I should (hopefully if all goes well) get my tablets on the same day. I will only start the chemo tablets on Sunday. This will give me the full 3 weeks break. Starting on Sunday night was actually good because I have my last tablet then on Thursday evening. So I still have my weekend to myself. It ties in quite well because on Friday 3rd is my wedding anniversary. It feels like it has gone really quickly and yet it feels like a lifetime! We will make an effort to get away and take a night to ourselves, which is not that easy with kids, money and work.

Deir"e Kohler

Pa# 190

Blog Entry : Off to MRI – 1 July  2009

Well I am going to have my MRI this afternoon. It was meant to be this morning but there was an emergency. It didn't bother me too much, I didn't have to wake up early and I could take it easy. I postponed my appointment with Dr Dupper too because there was no point seeing him before we had the scan. I am just really eager to see what there is / isn't to see. Think of me when I go into the noise machine and pray that all is going to be ok... I better not forget ear plugs because the nose makes a jet engine seem like a pleasant melody.

Blog Entry : MRI Results – 2 July 2009

Well I have had good news! It seems like there has been quite a lot of tumour death. There is still an area that is possibly low grade. They are taking my scans to this new fancy scanning machine to test if there is any grade 3. I am believing that I will only get good news. Dr Dupper is going to speak to a few other specialists to see what they have to say. So nothing is cast in stone as yet. I also have to courier the scans to Dr Butler to see what he thinks. The tumour death has meant some fluid built up in the wound site. This can cause scar tissue and affect seizures...but to me its is good news showing that there is death. There doesn't seem to be swelling or odema. You can actually see areas where the radiation blocks have killed cells. This is because the death bits are semi rectangular! (Plus its along my booster area) I will wait till I get more news and opinions before I can make my future plans! They will also give me a CD copy so that I can put some pics up on the blog. 

Brutal Honesty

Pa# 191

More good news - I thought I still have 4 sessions of chemo but I only have two. So my last chemo week will be 9th August - Then I am DONE - YAY!!! I didn't even fight / moan with him about doing it. I was just so excited to hear the good news about the scan and that it chemo was mearly 2 more sessions! This means when we open "The Grove" (more news about that later) I won't have to have any chemo! The other good news (it comes in 3's) It is James & my wedding anniversary tomorrow. What a year it has been. This journey was started 2 weeks short of a year ago. We have so much to celebrate and have achieved so much in the past year and in fact, in our whole marriage. (in all areas of our life) Even with all the hardships, we have no room to complain. Its time to count our blessings and look at all that has been done for & by us.  I believe that our faith in God and the support and love has carried us through. I know that I will have to spend years monitoring this, but that is ok if I can get on with my life and put this treatment behind me.Thanks guys for your prayers - See it works!

Comments from this blog entry – a lot of the comments were sent to my mother when she let people know :

I am a little too choked up to find words. God is SO good, you have been great, James is a solidstandby and yes, so much has been achieved.Thank you and the family for such a stunning year despite the deep valley you have walked through. What a view from the other side.Lotsa loveMom

Deir"e Kohler

Pa# 192

AMAZING, FANTASTIC, THANK GOD. Well done D - what a road it has been and through it all an inspiration to us all. HAPPY ANNIVERSARY for tomorrow - we will drink a toast to you and the year that has been and the many happy years to come.All special love Davina

This is Great news. Our God is Great.Many blessings to you, Deirdre and all the family.RegardsRowan

This is such wonderful news - God is good! Bev

Dee’s art development is really exciting – please congratulate her on my behalf. Thanks for the update Lynn – great news God bless Nigel

Thanks Lynn - It is good to hear that things are going well and that she is so incredibly positive!Everything of the best!Regards Gerrit

Hi Lynn & AlanWonderful news!! We hope this will be a powerful testimony to the Lord's mercy and glory.What a wonderfully positive person Dee is in the face of this adversity. She certainly is a lesson to us all.Please give her our loveJan & Peter

Brutal Honesty

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Hi LynnThanks for posting this on to us. I really appreciate it.Please give our special love to Deirdre and tell her that we rejoice with her in this good news. Alan and I will continue to pray for her and pass on any important prayer requests to the prayer chain.

Please congratulate James and Deirdre on their wedding anniversary and tell them that we trust that they will have a very special celebration tomorrow.May God bless them abundantly in the future.

Lots of love to you, Alan and the rest of the family, too.Joan.

A VERY HAPPY ANNIVERSARY, Dee and James! You are a role model of a productive, loving and mature marriage. Your wisdom, consideration, love and direction is a testimony to what love can achieve. We are so proud to call you OUR family!Thank you both for being so fully YOU.All our loveMom and Dad

Thanks Lynn so much for this! Thank you Lord! . . . for this surely is GOOOOOOOOOOD news!

I have missed so much of Dee's blog and have decided to set aside a day in my life to just read through everything.When is she going to convert all 'her writings' in a book? That surely must be her next project! Please encourage her to do the 'book' thing Lynn.

Deir"e Kohler

Pa# 194

Hey, when's tea?

Lv, Julie

Blog Entry : Whats been done – 3 July 2009

James & I were working out what has been done in the past 6 years of us being together (5 years of being married) We have moved house 3 times, had a baby, built a house, James has moved office premises twice, we bought shares in a farm, Anastasia changed schools, had 6 different cars, opened another business, travelled to 5 countries, gone for brain surgery, chemo & radiation, travelled around SA on business, started painting, did blog.... And now we are renting our house out and moving to farm in SEPTEMBER ...where we are opening a deli, kids area & eventually a B&B. I am so happy to have a new lease in life! I think I need a nap!

Blog Entry : My journey – 6 July 2009

Last night wasn't great. I tried not to take the Zofran (a little overconfident!) and ended up waking up at 1pm vomiting. So - lesson learnt. I must say I feel really quite tired and my stomach hurts from getting sick. Today I was quite emotional. I think it is a combination of things, the news, the relief, the chemo & the lack of sleep. All I wanted to do was curl up in the bed and feel sorry for myself. 

Brutal Honesty

Pa# 195

The good news is that Dr Dupper called to say that they are in consensus on the findings. The tumour has shrunk and there is evidence of dead tissue. There is no odema. If there is more tissue death (I pray that there is) then they may have to drain the area. Luckily for me the dead tissue has moved into the open space where the operation was. What's left of the tumour is stable (not growing) They cannot test it because their results may be incorrect due to the radiation, chemo. (I don't quite know what this means) I will have a scan in 6 months to monitor the tumour, see if there has been more death and see what the left over "tumour" is. (if any) I realised on the weekend that everything has changed since I have been diagnosed. Alot of people have asked me if the tumour has changed me. My response is no. I think the same, act the same and perhaps I am a bit more proactive. What I realised it has changed everything around me. The decisions I have had to make have affected my work, my children, my house, my husband, my family, where I live, how I live, my travel ... etc. This is significant because although I am the same person, I have had to change my choices. Being diagnosed has changed the course of my life and others around me by the decisions I have made. Suddenly my life takes on a whole new course that never in your wildest dreams I could of imagined. (Kind of like falling pregnant at 19!) When I was diagnosed, my parents, brother and ourselves decided to buy a small holding just out of town. We would build 3 houses. Primarily this was due to my health and the fact that they wanted to look after me. We were also discussing simplifying our lives. What has ensued is that we found a farm just out of town over looking a beautiful lake. We found a much bigger place that could be divided instead of just one plot. We could all own different plots and have our independence. James managed to get investors that would also own a portion of the land. My brother ended up getting a house that

Deir"e Kohler

Pa# 196

has left him bond free. James is now developing an olive estate (you know how long our municipality takes) called "Green Valley" This will encompass all the plots and give James to build a development. My parents are living out there, which has meant my Dad is back on a farm growing crops and my Mom is now close to the city. Now with the economic crisis, we decided to have a cash business and get out of the rat race. We are building a coffee shop, kids area, deli and bed & breakfast accommodation. (Which we will stay in till our house is built) It has given our entire family potential work in our area of interest. We will be able to be self sustaining in the future. Although, I think that there could have been easier ways for us to get to this place rather than the tumour ...  !  I have always believed that God does "Work all things together for good to those that love him" We need to be receptive and willing to move. I don't know what is in store for me in the future. This has been a hard journey. I definitely don't want to "learn the lesson" again! It is time for me to reflect on where I have been, what I am doing and what is my purpose in the future. (No matter how small our lives have meaning) I believe that we need to be positive and if we can through a bit of laughter - that's a bonus. Our lives don't have to be dreary. I hope my journey has motivated / inspired / helped you in your journey. It won't have made my pain worthwhile but it will make it bearable. It also makes me realise that we can choose to sow into peoples lives and our harvest is so much greater than the tiny seeds that we put in.

Brutal Honesty

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Email to and from Dan : 7 July 2009 Hey Dan As usual I am thinking of you and hope that all is well in your life. I only looked on your site today to see the Live Strong challenge this year. How did it go? Your and Sandy’s journey has been a source healing for me. Do you know that we have been communicating for about 2 ¼ years?!Kind regards as always…

Hello D!How strange, but not really... I had read your great blog post earlier -- I still check in -- and thought "I have to write and say Hi soon..." And tonight got your note, too funny -- on the same wavelength out there I guess.

Life has been OK -- just working, hiking, riding bike and motorcycle as much as possible. The LiveStrong Challenge was a great and inspiring event, as always. Though it was difficult raising much money what with the economy and everything. I just got TV hooked back up for the first time since 2005 -- when Lance last raced in the Tour de France -- so it's going to be an exciting month of racing. He's doing great so far.

Great to read the news of your MRI! It sounds like you are doing really well, relatively speaking, with the chemo and all. You definitely have the right attitude and outlook! You're also a source of healing for me. All the best,Dan O

Deir"e Kohler

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Chapter 19

It is finished

Blog Entry : Nearly there – 9 July 2009

Well I have one more night till I finish this round of chemo. If I take Zofran, all is well - I will deal with the side effects later. I only have one more round of chemo then I am FINALLY finished! It will be great to have that lifted off my shoulders. This time I have just had the treatment "in the moment" I only think about it when I have to. I am too busy planning my future now and the next stage in my life. 

My Gran has asked if I will talk at the church once my treatment is finished. I have been on prayer lists all over the place and she would like me to thank everyone who has supported and prayed for me over the past year. I automatically responded "Yes" which is quite unusual for me considering I attend church erratically.

Brutal Honesty

Pa# 199

Blog Entry : Another Week – 13 July 2009

Well the second last week of chemo is done so only one more week to go. I am still feeling all the effects of the Zofran and trying to detox, which is not easy! It takes about a week after the chemo to get back to normal. On Friday was extremely tired, I think the week of chemo hit me. Saturday wasn't much better and all the kids activities didn't help! But luckily, after a good sleep, I felt alright yesterday.  I am pushing on - nearly the end of the race and I don't want to loose it in the last minute! With the opening of a new business and moving home - there is alot to keep me busy. My mind is quite far away from medical issues - for once in 2 years. I am looking forward to starting a new fashion trend this year - I will start with some HAIR. Yes, it would be nice to finally get that on track again! With the cold weather, my leg hair stands about a meter high - but that is not exactly what I was looking for. I forgot to tell you... when I went for the scan, they gave me this "new style" (in fashionable burgundy) gown to wear into the MRI room. Just put it this way - I looked like Moses (or Noah) I just needed to grow a beard. It was so long but fell short of my extremely skinny white ankles. I had put socks on because I knew how cold it gets in the MRI room. What I didn't know is that they would actually walk me through the HOSPITAL to the x-ray department first, wearing this unsightly gown, mismatched socks and skinny while legs. (Lets not forget cold) My family will testify that I walk really slowly because I take half a step, so I had to run behind her, holding certain parts of my anatomy which usual require some sort of lift. I looked like a child in a Christmas play. 

Deir"e Kohler

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Well I am under a little bit of pressure to finish my last 2 paintings - I don't know where I can fit my canvases once we move! Back to painting at night!

Blog Entry : One Year – 20 July

11 months ago I had my head shaved! An incredibly emotional time! A year ago I was hospitalised... I can't believe how quickly time goes. I worked out that I will finish my last round of treatment around the time I had my operation last year. So a year of radiation, surgery and chemo. Its all quite a blur really. I must admit it does seem to stay back of mind these days as other things occupy my thoughts (which is nice for a change) I have been so quiet because the past few weeks have just been crazy with the planning and working. It is so exciting yet stressful building. We have had alot of fun shopping, designing, going onsite and seeing it grow. Soon The Grove will be a reality. I always worry that I am doing too much and watch myself. It is a hard thing to manage. But a little voice is always next to me telling me to take it easy and think of me first. Here are some pics of the building progress. It may not look like anything but when y

Comment from Sandra on this post

A year ago you wrote me a sms saying that you will have to go to CT. No one knew what will be in a year's time...now we know and I am sure we all are proudly happy to look at you and see someone who has been stronger than anybody of us!

Brutal Honesty

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I see again you really do need your "work" - it is good that you haven't lost this esprit...but please take care of yourself!

I would like to see the new farm project...it's always so inspiring seeing you doing all of these things. James and you always have such good ideas...like I always told you before, I always admired you for this.

Lots of love

Warm here at the moment...Sven and I have taken leave for a week. We didn't drive anywhere, just doing some paperwork, cleaning and tomorrow we will treat ourselves with a nice breakfast in a coffee shop....no worries, I haven't found a coffee shop yet that is able to make me a proper milkshake...miss you and SA.

Sandra

Blog Entry : Seasons in Seasons – 24 July 2009

I tried to get my chemo tablets so that I could start a week earlier. But they only arrive next week anyway, so we will have to stick to the schedule. I am off to see the doctor on Wednesday for my FINAL check up. My left ear has been sore for a week now and the constant buzzing could make anyone feel mental. It feels a bit like when you have water in your ear. Never mind - in 2 weeks time I will be able to say "It is finished" The rest, I don't really care about. My mother, my grandfather and my great grandmother have written books (oh & thx Mom 4 the pics of green valley) My mother's one was called "A time for everything" and my Great Grandmother wrote a book of poetry. The reason I am telling you this, is that recently, I

Deir"e Kohler

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have had (albeit annoying) song in my head "For everything (turn turn turn) There is a season (turn turn turn)" I have realised that, I too have been through a season. I always felt that I was born in the Autumn of my life, I have now passed through the cold Winter and I am looking forward to Spring. What I am happy about is that my life now will be filled with life. Also, in my last days, when my soul is in summer - I will have lazy days, drinking gin & tonic and watching the summer sunset! Helen Steiner Rice also has written a poem called "Seasons of my Soul" here is an excerpt

I ask myself often ..."What makes life this way,Why is the song silencedIn the heart that was gay?"

And then, with God's helpIt all becomes clear,The "Soul" has its "Seasons"Just the same as the year.

I, too, must pass throughLife's autumn of dying,A desolate periodOf heart-hurt and crying.

Followed by winterIn whose frostbitten handMy heart is as frozenAs the snow-covered land.

Brutal Honesty

Pa# 203

Yes, man too must passThrough the seasons God sends,Content in the knowledgeThat everything ends...  I could actually write about this forever - but alas - I have normal chores and need to take Leo to school! Sign...

Comment from my mother (Lynn Page) on this blog entry

That is beautful!How we all wish we could have spared you the cold winter... but we have learnt so much through your going through the way you did.Somehow when everything has been cleansed as it were through the winter cold, spring is so much more welcome, fresh, invigorating and fruitful.LoveMom

Blog Entry : Scan results - 3 August 2009

Well I am finished with chemo. I elected not to do the last round and didn't get too many hassles from my doc or my husband! I need to have my ear checked out...Its time to celebrate!!! I must admit, it was a bit of any anticlimax. I was expecting for feel great - but I just feel the same as yesterday! It was nice to know that I didn't have to swallow those HORRIBLE things! So this is me - one year later and fit and flourishing! To think I was actually on death's door this time last year! VERY bizarre.

Deir"e Kohler

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I have alot on my plate and quite excited about getting back to normal. This month is going to be busy! This past week I worked quite a bit - I took a bit of strain. I have realised that I just can't work like I used to. I put so much into it in the first 2 days that it took two days of sleeping to let me recover. I had a headache with it so I didn't feel happy at all! That is not going to happen again I am afraid! From now on, afternoon naps are a must. I think that I am a little paranoid now, after going through all of this, that it could happen again... I will just keep praying that it wont.

Here are some pics from the scans. The area that used to be "the gap" where I had the surgery is now filled with dead tissue and liquid. You will see a faint black outline where this is happening. If you look at the grade 2 that's left, it is smaller than what there was in January. I am very much a layman, but this is what I can see.

Leo looked at the MRI pics and said to me "That is very beautiful Mommy" - interesting point of view!

Blog Entry :

Well I finally have enough hair that I don't need to wear a wig. Obviously not as much as I could like, but some none-the-less. I could wear my wig longer (which would be easier) but this is my victory statement. Beaten a brain tumour! I will go blond again (give it a few weeks to rest out) It took a few days to get used to the cold again! But now I seem to have adjusted.

Brutal Honesty

Pa# 205

Email to and from Dan : 13 October 2009

Hi Dan I was wondering how you are doing – I have been so scarce! I hope life is treating you well. I am glad to have stopped chemo and all the other treatments – talk about a bad hair year! I think about you often. If you do ever find love again in your life, don’t be scared to tell me. It will be good to see you happy. I am sure you know where I am coming from! (A hard topic I know) Kids and family are all fine. We are staying with my folks in the meantime while we wait for the building to be finished. Surprisingly we haven’t killed each other yet. I think my dad must be taking a bit of strain having a “tribe” more in! (that being us!) Well I look forward to chatting to you again Kind regardsD

Hello DGood to hear from you. I've been a bit scarce myself (a busy summer with forest fires, etc), though I check your blog regularly. My few attempts to post messages there haven't gone through apparently, but know that I'm still out here following your good progress and quite chaotic life with all the construction, etc. You seem to be doing well despite the occasional setbacks.

Your attitude and sense of humor, as always, are continually amazing -- very much like Sandy's. You two must be twin sisters

Deir"e Kohler

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from different mothers -- the parallels in your outlook, honesty, and ability to find things to laugh about in the face of the big C -- inspiring... and that connection with what you write more often than not brings mixed tears of sadness and joy, a familiar item on tap around here.

But I'm doing OK -- been hiking a lot in the wilderness areas here the past couple weeks before winter sets in -- long, difficult but incredibly beautiful hikes through the most amazing mountains anywhere. And I'm lucky enough to have it in my backyard. And yes, I'm still doing those hikes alone... I never think about finding love again -- I already won that lottery once, so to wish for it again would be like asking to get hit by lightning twice... probably not a good idea.

It's looking like winter is already knocking at the door here -- it was 15 F (minus 10 C) yesterday here and it's lightly snowing tonight. Since I'm also recently into motorcycle touring, this kind of weather is depressing. Not ready to get the skis out yet. Guess I'll have to watch "The Long Way Down" DVD again soon. Have you seen it? Two semi-famous actors ride motorcycles (very similar to mine) from Scotland to South Africa. It's quite good, and actually makes me want to see some of that continent you live on... by motorcycle of course.... just to make it really interesting.

And yes, you can include anything of Sandy's journey / our emails in your book. You're such a good writer -- make that book happen!

Take good care of yourself,Dan O 

Brutal Honesty

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A message left on my blog from Divina

YES you need to write that book - I have LOVED sharing your journey with you and you have a very special way of telling/sharing it.LOLDavina

Deir"e Kohler

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Chapter 20

I found this Irish blessing. It is really beautiful and actually made me feel a bit weepy. (They were playing beautiful Irish music in the background which didn't help) I do have Irish ancestry so I think I might have a closer connection...

My wish for you

I wish you not a path devoid of clouds, nor a life on a bed of roses,Not that you might never need regret, nor that you should never feel pain.No, that is not my wish for you.My wish for you is:That you might be brave in times of trial, when others lay crosses upon your shoulders.When mountains must be climbed and chasms are to be crossed,When hope can scarce shine through.That every gift God gave you might grow with youand let you give your gift of joy to all who care for you.That you may always have a friend who is worth that name,whom you can trust and who helps you in times of sadness,Who will defy the storms of daily life at your side.One more wish I have for you:That in every hour of joy and pain you may feel God close to you.This is my wish for you and for all who care for you.This is my hope for you now and forever.

-- anonymous Irish blessing

Brutal Honesty

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Deir"e Kohler

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Epilogue

Blog Entry : Tumour shrinking – 2 February 2010

I had great news yesterday ... It seems as though the tumour is shrinking! There is no visible malignancy and what is there is either odema (swelling / bruising) or low grade. I have been expecting (hoping) it. I think it has been due to, not only, the medical treatments but also the incredible faith, prayers and support during this time. A real team effort!

I can't pretend that I don't get moments of worry. I think back to the prognosis and it does scare me. I have spoken to quite a few people who have been through treatments and a lot of them say they won't do it again. I think that it is quite hard to totally forget.

So life continues, the... mundane, exciting, sad, tired, gifts, pleasures, love, frustrations, rewards, difficulties, pain, tears and laughs. "There is nothing new under the sun" BUT it is all worth it. I am richer for it.

Comment

WOW WOW WOW WHAT FANTASTIC NEWS !!Thank God D - all our prayers have been answered. Here is a toast to life and let us value each and every day. LOL D

Brutal Honesty

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Acknowled#ments & $anks

There are so many people who have been part of this process. I have been overwhelmed by the support, prayers, emails, sms’, phone calls, gifts and encouragement. I cannot express how much all the prayers, support and encouragement from everyone has meant. I have had people from all over the world like Norway, Germany, England, Australia & the USA being in contact, viewing my blog and wishing me well. I wish to thank you all. I wish to highlight 3 people who have made a significant contribution to this book and my treatments:

Mom (Lynn Page)She has run around trying to assist me in any way possible. Her effort to ensure my healing has been incredible.

Dan O’ConnorI have never met, seen or spoken to Dan. But in the 3 years he has been an encourager. His devotion to his wife is amazing. He has willingly and honestly shared so much of his heart and journey he (and his wife) went through. I thank him for that. Much of this book reveals our emails. I want to thank Sandy (his wife) who has passed away and yet left a legacy of love to all of us.

Deir"e Kohler

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JamesHe is my lover, friend and husband. He has been a gift from God to help, support and guide me. I love him deeply, not only for what he has done, but for who he is. He is able to look past the physical pain and ugliness of the experience. His consistency, loyalty and faith has not altered.

Although there have been times in my book where I have been frustrated with the treatments, doctors or medical staff, I cannot express enough my gratitude for their professionalism and dedication. Obviously none of this would have been possible without their help.

My family has actively supported me in so many ways and I love and thank them for it.

I want to thank everyone for their faith and prayers during this time.

Brutal Honesty

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