Tuesday, March 31, 2009

Terrible Tuesday

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

Leo is fine. He will go to theatre next week. It makes me so nervous.

James' gran is still bad. She is 86 and they are not sure if she will make it. With the amount of plastic surgery she will need, we don't really feel that it would be worth it for her. She is taking along time to respond.

Monday, March 30, 2009

Busy monday

Well seeing the doc and getting the next round of tablets. Today the chemo 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!!
d:)

Friday, March 27, 2009

No more break

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?

I might as well 'live it up' this weekend while I can. Which is easier said than done as I have spent most of this week with flu. I went to put Leo to bed last night and ended up falling asleep before him! I sent James out the room because Leo gets distracted and he ended up falling asleep on the couch. Luckily his snoring woke him up.

My brother and sister in law 's 4 month old baby had to go for a heart operation on Wednesday. All went well and the baby is recovering. It is bad enough as an adult, I really sympathise with parents with little ones. We are thinking of them.

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.

Good weekend all d:)

Wednesday, March 25, 2009

Brain hole guage

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 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!! (PS I can go to the toilet on my own now - unless Leo insists on joining)

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 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

Monday, March 23, 2009

Monday

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 adversion 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...

Thursday, March 19, 2009

Catch up

Sorry for taking long to write, the weeks just seem to fly by. After alot 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 alot of 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 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!)

Monday, March 16, 2009

1st Chemo finished

Well the first week of chemo is done. Thank goodness. I am still feeling a bit nauseus, 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! It would be nice if those in town could make it. d:)

Friday, March 13, 2009

Quick Update

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 do 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:)

Wednesday, March 11, 2009

Make Over


A girl has to feel good

Not a good start

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 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.

Tuesday, March 10, 2009

Ready set go...

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. Unfortunately that doesn't mean that there aren't some hidden somewhere.

My dilemma is that it is quite alot 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... Doc says that I will only feel the effects after a few days as the drug has to build up in my system ...wish me luck!

Monday, March 9, 2009

So I start again

Today is Monday! Poor 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.

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 different 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 laymans 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

Thursday, March 5, 2009

How to harm your brain

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 alot 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!

I am organising James' 40th birthday party in May. We are going to have a togo party and the planning is quite exciting!

Sunday, March 1, 2009

Yay Yay its Monday...

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 replyed 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. I am ready to have my life back.

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