Thursday, January 29, 2009

Semi good news

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

Wednesday, January 28, 2009

The bug

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. Its like the movie "Bubble Boy"

Monday, January 26, 2009

Brain catalogue

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 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 the Load Shedding project for Eskom (don't ask too many questions) 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 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. deirdre@kohlerprojects.co.za

Saturday, January 24, 2009

Would you like Chemo with that?


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 alot 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

Wednesday, January 21, 2009

Brain scans for dummies

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!


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!

Tuesday, January 20, 2009

I don't feel so bad

Yes I do have some memory loss (walking around trying to remember what I am doing) BUT I don't feel so bad!









Saturday, January 17, 2009

Smoking



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.

James & I have been doing a lot of research on how to add on treatment to boost effectiveness. There is a huge list things that seem to be effective. One of things they mention is cannabis (weed, pot, green gold) as having many benefits both in healing and dealing with side effects. This is from medical research not someone I spoke to on the street corner, by the way. (I have actually also had 4 independent people tell me about it) Some countries actually prescribe it. In South Africa, the drug punters like to walk past you and say "sorted?" So if I wanted to have tumour 'sorted' I would have to say 'no' or would I say 'yes'?

Thursday, January 15, 2009

Understand your body

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!

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 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!

Wednesday, January 14, 2009

Intelligent Brain Tumours

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 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.

Have a great day - mid week!! Yay

Tuesday, January 13, 2009

Back on track

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 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

Friday, January 9, 2009

My brain garden

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.

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.

It 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!

Wednesday, January 7, 2009

Rash

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 alot of attention, but I would rather get it from being a movie star or a ramp model...

Tuesday, January 6, 2009

Just an ordinary day

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 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

Monday, January 5, 2009

Radiation Update - 10cm x 10cm

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...

Sunday, January 4, 2009

Brain Name

Someone suggested that I give my tumour a name so that I can launch verbal abuse at it. I actually think that is quite a good idea. Before I knew I had a tumour, I used to say that I had "Brain Fry" whenever I got tired or didn't feel like talking / thinking anymore. With reflection, that was probably not the best idea.

So instead of swearing, I should probably say I am "Tumour Fry-ed" or... You are such a "Tumour Fry" or... It is just so "Tumour Fry-ing" typical. The best will probably be to say...Just "Tumour Fry" off.

This way instead of directing my "common" language at random objects. I could direct them at this "Tumour Fry-ing" tumour. Hopefully it will get the hint, feel less confident and dwindle into obscurity.

PS If you come up with a better name, please let me know

New Year Resolutions

I am so sorry but I can't help myself. I attempted the noble one but I realised as I wrote it how unrealistic it is so...

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 in
  • Don't hog the kids playstation or WII
  • Don't sneak eat all the left over chocolate during my 'afternoon nap'
  • Try not to turn the children into personal slaves / porters/ waitrons
  • Exercise
  • Work

I think I will just do what I did last year...

  • Make millions
  • Travel
  • Fight a brain tumour


One Week

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 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)d:)

Friday, January 2, 2009

Eat chips

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 was reading on another blog - this guy was saying the doctors say he must try live in a stress free environment. HELLO, you keep telling me I have a BRAIN TUMOUR and need to go for chemo & radiation.

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?)

Thursday, January 1, 2009

Happy New Year

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

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