Wednesday, October 29, 2008

Treatment plan (again)

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:)

Tuesday, October 28, 2008

Achieve your goals by 20

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

Monday, October 27, 2008

Ramp model

Before 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 boobs! 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 tacked" 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!

Friday, October 24, 2008

More information

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 week

Some information
The big block "hole" in the last scan picture is the part where they took out tumour
The 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 border
These 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 months

The doctors all agree that this type of tumour needs the most aggressive treatment
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)

Thursday, October 23, 2008

Stand in the queue

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 hada real laugh on the weekend, we were 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!

Wednesday, October 22, 2008

Brain Hole 2

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 too 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 take the brain flap off. When the op is finished they put the flap back on. Hopefully the holes grow closed again (James assures me they will)

Tuesday, October 21, 2008

Waiting

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 rate

I 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".
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.

Saturday, October 18, 2008

How am I feeling?

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.

No 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 like our life to the full, even with our health challenges! But by all means ask how I am!

Friday, October 17, 2008

Hospital Outfits

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 buts. 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 word)

Thursday, October 16, 2008

The mask




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 alot 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!!)

Tuesday, October 14, 2008

The ball is rolling

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. 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:)

Professional Napster

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. 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! (I definitely won't try fish!)
d:)

Monday, October 13, 2008

The skull

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!

Friday, October 10, 2008

The plan

Well it might change, but after the discussion yesterday, it seems like most of the specialists have come to a consensus. There are apparently a few cells that are grade 3. This requires active treatment before they are at risk of turning into grade 4.

I will go on 6 weeks radiation starting as soon as there is approval from the medical aid.
The medical aid has given me allocation per year which should cover it. Luckily they renew every year which means that if I need more, I can apply again next year.
  • Once radiation is approved, they will do an MRI scan as well as a CT scan. This should happen next week (depending on availability)
  • 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.
  • 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 loss
  • Chemo will cause nausea, fatigue and perhaps vomiting. It seems to be quite mild compared to conventional chemo
  • My 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 definitely 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.

Tuesday, October 7, 2008

Next steps

Ok now I am P'd Off. It seems like one bit of good news has to be followed by bad. This afternoon, the doc phones and says the "committee" suggest that I start chemo and radiation soon. (Like in 2 - 3 weeks) They are worried about the possibility it might be grade 3. He also says that I will have 6 weeks radiation for 5 days per week and then 6 months of chemo ...Well I have to meet him again this week as well as the local surgeon

Friday, October 3, 2008

Oncologist

Ok been to see the Oncologist. It is very strange to walk into a chemo ward. Not scary, just surreal. Well after one hour of paperwork and another hour of consultation, we seemed to understand a bit better.

I have to do 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 is also the question of when is the right time. If the tumour gets more aggressive, you won't be able to do that in the future.

What was disturbing is that the tumour might be an oglioastrocyoma. Astrocytoma's are more aggressive. They have also graded it as a Grade 2 - 3, Grade 4 is the highest and very dangerous.

James is now wanting to tackle this "head on" (so to speak!) He is not happy with the news. Surprisingly, I am coping alright, I am not happy, but I realise that we need to do what must be done and stressing is not going to help. They keep offering me counsellors if I need one.

Thursday, October 2, 2008

Black out info

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. Alot of the grade 3 tumour was removed.

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