Orthopedic Surgeon visit, Hamilton

Well, I went to my Orthopaedic surgeon today Dr Hardy at Waikato Hospital (above photo) and he announced I will have this tumor removed in Auckland! I am being referred to a Specialist in Auckland. This will take place the week beginning 24th April – well, am due for an MRI on the 24th, so it will be a day or two after this date. They will be removing the tumor, replacing the wrist bone (may cut my fibula up for it) but, if the bone down towards the fingers is no good, they may amputate my hand – probably wont decide this until they cut it open and have a look I imagine, so no doubt I will be advised on this…….. mmmm interesting. Then, if all things go according to plan, replace the bone, then fuse the wrist with some steel.

I have a feeling I will be in Manukau Super Clinic hospital for a week – I would say two at the most

Food

That’s the other thing, I am finding that I do not care what the cost of the steak is (talking food now) I will buy it.  Saturday night I was dying for a steak, I stopped by New World and picked out the best steak and I didn’t care how much it was ! I then got broccoli, carrots and new small potatoes. Job done. $22.16, 4 scotch fillet steaks and veg.  Cheaper than Dial a Dino’s and 10 times the quality.

If it is the best, highest quality of steak or fish, I buy it.  I am no longer interested in the “average joe” of food out there.  It has to be supreme quality to pass my lips and this includes coffee now.  I just can not tolerate instant coffee anymore…. it leaves the most ghastly metallic taste in my mouth (chemo issues) and fortunately this is the only thing I come to a slamming halt with.  Most other food is o.k. as long as it is quality.  Tried the Cranberry, V8’s high nutrition stuff, and god, just could not go there ! it tasted so awful for me – more chemo issues.

Cleaning Frenzy

Yesterday, I blew $170 odd dollars on food.  The other thing I am finding I need “pick food”  small stuff, but lots – something like crackers or biscuits – I can not just take a little but keep going back for more, and more! Including small cheeses, olives etc..

This chemo trip is one weird trip  – your head pulses as well……….. and temperature change – one minute I have a cap on, the next I have a woolly hat on……… it is freaky.

I am also having this cleaning “attack / frenzy”  I have cleaned every article of clothing that has remotely hit the floor (have a pile of washing on a chair to fold tomorrow) , cleaned the kitchen floor tonight, spent 2+ hours today with a hose.

blasting away all the green moss in between the cobbles outside my steps and just being “anal” about it (still need to finish this too by the way, it is still nagging at me that I could not complete it, but I was so tired and hadn’t eaten, I was doing more damage to myself than good as well as being in the sun which is a big “no, no” having chemo).

I then spent the following week water blasting the fence along the driveway to my house. Staring at this ugly blackish fence was annoying the heck out of me and decided to clean this as well ! I can now wave to Tracey in her house in the mornings (the one with the car parked in the driveway) when she is in the kitchen making breakfast letting her know I am o.k. and look at a nice clean fence while I am having my cup of tea. My cleaning mode continued. Next I cleaned my concrete deck and you will have to trust me it was just as grubby as that wooden fence above and here it is all nice and clean.

Some Normality

 Well thank god I have no more wires and needles sticking out of me.  The last needle came out this morning.  I had this intravenous line pumping anti-nausea fluid direct into my chest since Wednesday – simply god awful.  It has been sht.  basically.  However, today/this afternoon, I have been great.  This is meant to be a bad week this week.  I haven’t drunk much water today, so I think I will suffer big time nausea in the morning…….. wonder if these pills will work……. anyway, it is situation normal to wake up feeling like sht, so don’t know why I think I will feel good?????

God  when I feel good, I feel like screaming it to the world.  Promise that you won’t take “feeling o.k.” for granted 🙂  It is a gift and is priceless.

I am lifting myself through the dregs of the morning with two cup of tea to get me to some normality and boosting this with some Gravity Plunger coffee I got shopping yesterday.

Life after 2nd Cycle

 It is now 7.15  Saturday  morning and I am fighting nausea – yesterday I took a top up of more anti nausea pills – I wonder if I should again – mmm might not be wise as I am on quite a high dosage through this pump and I get it out tomorrow and will have to be reducing this down by oral tablets, so may as well start the agony today.  Have just had a cup of tea to pick me up a bit, and staring out my windows, gave my neighbor Tracey a wave and looked at all the jobs in my garden to take my mind of things.

I might go and buy some liver today to make a stir fry – as this must help my white cells with extra help.

Yip, becoming seriously bald now – folks say I have a nice shaped skull which is kind, but to me I feel plain ugly.  I have that wig, but it still isn’t very comfortable.yet.  Also, all my clothes are getting hair in them and washing them just doesn’t get you an itch free” shirt anymore – god, it is shit.  I think, I am gona end up throwing away all my clothes at the end of this as I am not comfortable anymore wearing my clothes, or I might have to go to the opp shop and buy 7 $1 tops/shirts a week and then throw them away.  I am just in a frustrated horrible state at the moment.

2nd Cycle, that was hell

God, I have to say, I lived through hell and back on Wednesday.  Pure savagery in a nutshell.  it started at 6.30am and needed continual anti-nausea medication.  It got so bad, that I had to have a sub-pump.  Now, this critter is the evil b*******d that got me on Wednesday.  Because I was so sick, they had to put a direct line into me with a cocktail of anti-nausea, and I saw this god dam needle and where the nurse was putting it – in my chest by the mid chest line of a v-neck top, where it is all skinny and ribby.  I requested Emla Gel which is a topical anesthetic.  She then basically mentioned, it’s not that bad (basically she was not there to stuff around and meant business) and of course, I thought “yeah right, it is gona hurt like sht”) .  This was “the stick that broke the camels back”.  I just broke down, it hurt like hell, and traumatised the hell out of me.  The day just got worse as by the end of the day I was finishing my chemo, and they flush your veins and lines out with a saline/potassium solution and this stung like hell in the last hour or so (for some weird reason as the bag was a 6 hour consumption time) .  Compounded by all this, I have god awful veins.  They are just pathetic.  I have to put them under hot running water for 20m for them to pop up and then they are still a struggle to have a line put in for chemo.

By 8.30pm that night, I had, had enough.  I was so pst off and hated the world.  I figured, I have to get control and shake this.  My only thought was to get the hell up, stop lying down and meet this head on.  So, I put my trainers on, grabbed a blanket and made a toga, and off I went, armed with a bottle of water.  For the next hour, I marched up and down that ward, and met a couple of true characters in their 50’s and one of them was giving a nurse a good humorous “curry up” – it is amazing all the different personalities of folk in this ward – this bloke was wearing a Ministry of Works t.shirt, and he looked like he could have a good story to tell over a beer or so !  However, I was on my mission, so didn’t really kick back the night with him, and continued on, up and down, back and forth.  By about 9.40pm I figured I had walked at least a few k’s and decided this would do.  I figured, this had to get the blood moving, the enzymes working the muscles working to get the system into some normality for the new day ahead – it just had to have achieved something.  If nothing else, I met two interesting codgers and got out of my room.

Unbeknown to me, my blood count was terribly low, at around 88% (white and red cell count I think) which was making my life crap and wasn’t strong enough for my body to cope with all that was being thrown my way by the chemo.

I found this all out the next day by my Doctor (the 2.i.c to my Oncologist) and she said if my blood count wasn’t up today (Thursday) I would have to have a blood transfusion.  My brain instantly went to “more injections” and wanted to run at “warp speed” in the opposite direction !  I then accepted this outcome, however she said she would wait for the blood results.

Well, hallelujah !!! my counts were up in the 90’s and then I got the four magic words “you can go home”, which then lifted me no end.  I look a fright with swollen eyes and a ghastly round puffy face…

I am now home, and emulating a cat 🙂  I have been lying down all afternoon chatting away on MSN to friends and doing e.mails 🙂

I am now contemplating to cook dinner……. it might be a steak stir fry with that Watties Sauce mixture.

Hey, my tumor is definitely going down, I am sure it is not so raised on my wrist like it was.  So I can report progress here.  I am also booked in with my Orthopedic surgeon on the 5th April for a consult to discuss this awesome extraction of my tumor, replacing my bone and fusing my wrist, which will be so darn interesting.  My Sister will be with me to sit in so she can ask questions I wouldn’t think of and can also remember this whole consult so afterwards I can re-affirm what was said.

My Wig

 Hey !!!  I just have the funkiest wig  – It is lot shorter around the ears and neck and hugs the back of my skull.  It is dark brown with auburn /red highlights.  My hair is itchy as at the moment, so when that crap goes away I will be wearing it more.  Gosh they cost mega bucks!  (I spent more than my allocated grant……. yeah, typical female mate,,, l.o.l)  Here I am all glammed up wearing my wig with my good friend Barbara Lee ready for a Beach Party!

The Cut

at 12pm today, I had my hair shaved off – a friend said yesterday to do it.  When he first said/typed it, it bought a tear to my eyes.  after 12 hours of the hassle of it all, and then thinking about it, there was only one choice to make. So I did.  I have to say, it was the hardest thing to face and would top quite a few ugly things that have happened to me bar one.  While it was being shaved off I remembered this song and scene from GI Jane… (below)

I look so ugly.  Ghastly in fact. Seriously.  Until it all disappears and I just have skin left it is gona look just horrible.  I actually can’t wait till it is just skin.  I can’t even look at myself in the mirror. It is god awful.

I have a consult with a beautician tomorrow referred to my from Oncology to fit me with a wig.  These look completely real.  If they charge me $400 which is quoted in their brochure they can forget it.  However, I have an inkling they maybe free due to them supporting folk with cancer. see what happens tomorrow.

will have to search the web for those bandanas they wear in tour de france……. hopefully google or the Discovery website have them…..

Windtraining is on the 4th April – o.k. that could be smack on the day of chemo in April – will check all this on Monday (19th March) when I am in hospital again.  As well as a letter from my Oncologist and get her to be descriptive on what I can do and not do.  I will tell her all about the awesome windtraining class 🙂  She knows all about me missing out on Ironman, in fact every nurse in Ward 25 knew on the 3 March with me stuck in there!

Well got my Xterra wetsuit today that I won as a spot prize at the Half Ironman I didn’t finish in Taupo – mmm it really is nice, the material is so nice and soft – I can’t wait to jump in the water with it.

I am heading over to Whangamata on Saturday to watch the TRINZ tri as a mate of mine is doing it, so will be very tempted to jump in the water then……  but will be to shy I reckon.

On Saturday I am doing the Relay for Life at 4.oopm – us Cancer kids do one lap or something – not sure on the details… but my cousin is gona walk with me 🙂My  ghastly shot

The Change

I Am starting to lose my hair…going to sleep lying my head on a pillow hurts – no one tells you this when your hair is about to fall out… I had to smooth down my hair and then gently lay my head on the pillow to sleep so it didn’t hurt….. I will attach a photo of my new (short-term) haircut – just went over to the neighbours for a photo as by this time next week I will have no hair……….. it is quite scary….

Before the cut
After the cut

First Cycle side effect

Well, I ended up back in hospital again – here is what happened :

Basically, I finished my first cycle of chemo last thursday – cruised out of there at 4.30pm and then came home and had a big dinner – big dinners is about half what you would feed a child ! just outrageous.  Anyway, Friday morning woke up feeling crook, and thought, hell, it has started already.  By lunch time I was very weird feeling with contending with pins and needles. A courier driver woke me up  and a I  bolted to answer the door. (ordered some Rudy Project Lenses – mmm nice ) and then the rest is history.  I fainted, woke up shaking like crazy. knew this was not normal, rang oncology, they told me to get my but in there.

With blood pressure 90 ova 60 I was rattling and had the most severe pins and needles in my life and really cold. They finally stabilised me 2 hours later.  Felt so, so, scared , scared the hell out of them, and myself, thinking I was going to die as I was so cold to the core and I was very lonely.  God I felt crap.

In a nutshell, I was dehydrated, and my kidneys hurt like hell (felt as if someone had got a machete and sliced each side of my ribs, and the fault all lies with my arthritic medication , I now take no arthritic medication and hope this monster is suppressed with all my chemo.

The worst part was I missed Volunteering at Ironman 2007 – The event I had trained all of 2006 for this event  and did not get to the Start Line. The event I had Volunteered for and missed due to arthritis medication reacting with chemo.

I came out of hospital today – god it sucks in there, but they are angels.I have just set up my modem and phone line .  Have to really pace myself, and find this seriously frustrating, as there is so much I wana do