Blog – Page 3 – Trisurvivor

Brain-Dump – May

May 22nd 2007

Isn’t it weird when something major happens in your life you see it on TV. in a programme, whether your having an affair, you’re in a bad relationship and a similar occurrence and example is on a programme, a fight with your best buddie – it just happens – I wonder what this all means, a co-incidence? karma? a sign? I would love to know what this is or just to accept it as c’est la vie. Have just watched BONES on t.v.3 – a victim on there had Sarcoma in his groin/hip and was dead (they found his bones) – on Wednesday on CSI I am sure I heard the word Osteosarcoma, but definitely Sarcoma, and they mentioned the immune system….. (which mine was pretty run down at the time of getting this bug),,,,,, god, no doubt this person died as well – will have to watch this one to see where the Sarcoma was…….. ugly eh – ya just have to sit back and see what they say/find and compare notes 🙂

I am finally feeling better, god you feel like pinching yourself to believe you’re not dreaming. That last stint in Hospital was god awful – I don’t think I will ever get past Day 6 each time I leave the hospital after my nuclear blast of chemo and always end up getting a lonely impersonal taxi back to the hospital. The body just does not take this chemo well in a nutshell, my immune system must say “what the hell are you doing to me! It knocks me for six each time, but it gets rougher and harder to crawl myself back to some semblance of “normal” each time!! “.

My oncologist said she gave me maximum dosage each time – these last three chemo blasts have been the full arsenal, guns blazing. She said she did not change or lessen the dosage simply to have the desired result. I appreciated this, as there is no point “tip toeing” around this critter, ya just don’t want it to turn round and bite you. However, my poor immune system suffered a knock the first time, a double knock the second time and on the third time, it just couldn’t fight back and has taken three and into the fourth week to slowly be able to breathe fresh air for the first time. It is like I have been in the most never-ending nightmare and not woken up, it is like your 33ft underwater where the greatest pressure is on your body while diving, and your slowly kicking to the surface – in my case fighting to get to the surface, which you can see the sun shining on the surface, but you never ever reach the surface and I am weighted down struggling and fighting to get there in slow motion.

Unfortunately in that first week out of hospital of the third round of chemo I was defenceless against any small bug, and of course I got a cold and the rest was history, despite fighting my temperature on the Thursday and Friday of 38.5 deg, knowing what they would do to me in hospital, the stabbing of the shunt or lure, whatever you want to call it, the failure of the lure, the pain of the flush when they try and push the fluid through my veins which have clotted or failed and so the flush is forced through my skin tissue which then makes you almost put you through the roof in pain, to then be stabbed again, to put up with the noise of ward 25, the incessant beeping of those god damn ivac machines that regulate the I.V. fluids or chemo. I fought my temperature for two days to avoid all that, but to my despair I had to give in knowing I should have been at the hospital at 38 deg pronto – I am one tenacious, stubborn female.

I am staying up tonight to watch Team NZ race Luna Rosa the first race I have stayed up for – it is quite important as the next one is Oracle. It will be a good race, just hope it is more than 10kts and there is plenty of action and NZ get some really good windward lifts.

Well, it is almost race time in Valencia and time to make a coffee – another reason I hope there is a lot of wind happening over there so it is a fast race.

A song (click below photo) that helped me keep inspired training for Ironman through cold southerly headwinds, rain and pain, followed by the following year with each round of chemo I had to go through. The words just cemented into me to stay strong and keep going despite my fear.

May 21st 2007

Well, here I am kickin back listening to Nora Jones, it is late in the day, such a long day, a good day, with friends dropping by, my Brother, my friend Anna. Mum left today, after 4 days with her at my side, helping me through this, staying just a few miles down the road at a hotel, leaving with my Brother back home to Te Awamutu.

I’m just sitting here thinking I have almost reached a milestone on my journey, through this rocky road I am taking one step at a time. It was only a few days ago, I had all tubes imaginable coming out from my body; a draining tube from my 12″ cut down my leg where the removed my fibula – it just looks amazing. A draining tube from my arm which has been cut 90% of my forearm where he extracted the tumor, carpal bones surrounding the infected radial bone and approximately 7″ of this radial replaced with the fibula. Along with these tubes were I.V’s, one in my right wrist with another in my external jugular on the left side of my neck. {once again, my veins were difficult. The anesthetist was not successful on his first insertion, for an anesthetist to fail on his first attempt, is unheard of} Wish that oncologist of mine was there to witness this……… I know,,,,,,,,, anyway, hence the jugular getting a IV line, being a guaranteed hit. Oh, and this was done when I was in snooze-land during the operation! as well as an i.v. line with local anesthetic going 24/7 into my nerves which reached right down to my finger tips so i had completely no pain at all in the left arm and this was inserted under my left armpit (thank god i was asleep when this was popped in!). So, the other day,,,,, all these tubes were detached and i am now hobbling around the wards of the Manukau Supper Clinic.

May 20th 2007

All drains out, I,Vs out, fingers still very swollen but a little less as each day goes by. Docs happy with progress. all carpal bones removed, titanium rod in wrist and elbow end, plaster on tomorrow. Am soldiering on. 4 weeks for pathology report.initially pathologists glanced at it and says things look o.k.

I am one finger typist – am so dam slow! it is so frustrating. hey my doc came round last nite, right when i was changing into my pyjamas, and trying to do my buttons up!! I had only got one done and this took 5 darn minutes!! he asked if i would like him to do the rest up, and l.o.l, I said, oh yes please! Aah it was funny.

He also said my arm is lookin great and could be out by Tuesday. they are gona put plaster around my arm Tuesday as well. at the moment it is in a soft bandage. The scar is gona be wicked!! the food here (Manakau Super Clinic) is pretty good. it feels like a private hospital, but it’s not, and it is only 8 years old and is a fantastic hospital to be in.

Post Opp (14th May)

(New arm with Fibula and titanium rod clamped in, Carpal and radial bone removed along with the tumour)

New arm May 2007, tumour, radial, and carpal bones removed & replaced with fibula

Operation took 5.5 hours, very complicated, but Dr French very happy with result. Extra carpel bone removed around infected radial for extra prevention of possible cross contamination. 5 – 7% chance of this issue returning to remaining radial and surrounding area of primary infection. Drain tubes from donor site and forearm. lures in right hand for anesthetic and blood transfusions (two separate transfusions done -2 units Tuesday during procedure as well as Wednesday, due to haemoglobin at 89%, second lure in external jugular for morphine, I.V Nerve Block in left armpit. Oxygen intake as well. B. P. 125/78, saturation 98% Pulse 69.

Removal of all tubes and drains today. walking with crutch last night and this morning. The nerve blocks were fantastic!

Unsure of things before removal of radial

I can’t shake this anxiety pain in my chest – I usually take paradex but for some weird reason, I am only allowed panadol – it is strange. I can’t stop thinking of what Dr French said in Auckland………….”it can metastasize inside the bone”, “there is a 60 – 65% chance you will get through this o.k”, “if a tumor gets to the lung, it is all over”……..”it can still grow back on the remaining radial bone”…. .. .. “but we will keep a very close eye on you with CTs and MRIs every three months…”

I will be so paranoid and will want a xray every month, but this is pointless as it won’t pick up microscopic tumors anyway after such a short time. I am trying real hard to be happy. Bad bugs hate happy hosts. I have to stay happy. I can not get morose. I have to think happy thoughts. I wish you were someone just to hold me all night long – nothing else – just to hold me, and tell me it is gona be o.k. and keep the ghosts away in the night……..

Ignorance is bliss. I don’t care what anyone else says. I was o.k. before I visited Dr French. My Sister said I was told all the above by my oncologist in February. However, I must have let it fly right over my head or was in shock and it didn’t register. Just as well I reckon cos I went through sht anyway. At least I am 4 days away from the half way mark and on the finishing leg of this journey.

I think I will click on “Dirty Dancing” on my laptop and lose myself in it and switch off to reality…

May 8th 2007

We travelled from Hamilton up to the Manukau Super Clinic, Auckland to visit my surgeon. The visit was encouraging but also at the same time what he said made the reality of my situation more real which up until now did not think about or accept . He scared me with the statistics of this Cancer I have. That my chances are 60 – 65%. If it goes to the lungs I am history. This was something I hoped would not happen

Manukau Super Clinic

I am off to Auckland tomorrow for a consult about my operation at the Manukau Super Clinic on the 14th May – this will be cool as I will get all the details – wicked. There is a chance I could wake up without my hand though. When they open it up and they think, “oh crap”, I have told my surgeon to cut the critter off. I have told him I want to live for 50 or more years, not one year.

Wall Photos

Each trip to hospital for chemo, I got into the routine of hanging up my photos in my room to escape my room and draw inspiration and dream of being where those photos are instead of having ghastly tortuous chemo.

April 18th 2007

I had to go for a warrant today and I need two new poxy tyres. Darn – it is gona kill me on the money this month, as I spent $500 yesterday on a new chimney for my fireplace…….. god damn, did I tell you? I probably did. it just sucks when you can’t see any difference from the old chimney to the new chimney. .

Next Monday I am having a CT scan – ooow, they will be putting a lure in or giving me an injection with this god awful fluid so it helps show everything on the x-ray. Then Thursday I have an MRI – will take my new earmuffs to this event, god damn that thing makes a racket.

Am getting a cold I think……….. my nose has been dripping all day – mmmmmm god hope this doesn’t do anything scary too me !

3rd Cycle And Recap on things

God, what a trip. However, I have to say the first two days of my chemo went well. Despite being really scared stupid about the pending lures being put in, I was one prepared wee kid. I had lathered my two wrists with emla gel (local ointment) that will have localised the first centimetre of skin and tissue as I put it on at 10.00am. I then took a mild sedative to try and relax me. I also bought Class 5 ear muffs from NZ Safety as Ward 25 is so god damn noisy and I am a terribly light sleeper. So, here was me with earmuffs on waiting for the torturous lures to be stabbed in me snoozing away. The doc had to shake me awake as I couldn’t hear him l.o.l I organised him to put one lure in my left for the saline potassium flush and a lure in my right wrist for my chemo. This will prevent the agonising torture of the potassium saline flush to be put in the same lure as the chemo – the chemo is really harsh and strips the walls of the veins and so after the chemo the potassium in the saline stings the hell out of the exposed nerves. They both went in well so there was no chance of them blocking or leaking into the skin tissue (which has happened two or three times and it hurts like hell, especially when they have trouble putting the flush through from the hypodermic and when it does go, it is all of a sudden and you almost go through the roof in pain and makes you seriously pst off and almost cry at the same time! ).

**Sunrise 2007 over Hamilton, NZ looking through**
**the window from my hospital bed**

However, day three was another day from hell repeated like cycle two. I was sick all day. However, I later found out, the shutter was left closed on my sub-pump (the pump that shoots anti nausea in me every 20m or so via a needle in my chest) that night – rrrgh the incompetence of the nurse. God, I won’t forget this for cycle number four in June.

The next few days out of hospital, I felt like I was walking on an Ice Shelf ready to fall in (having to go back to hospital) – I didn’t know what was gona happen – creatinine overdose, neutrapenic, or what but felt doom ahead of me. I thought, if I can get past day 6 out of hospital, this would be fantastic.

Wednesday, I went to “feel good, look good” with the Cancer society. This was brilliant. Up until that day, I had no interest in putting make up on. I would wake up and look at myself in the mirror and think “what an ugly site, I don’t feel female or male, just nothing. I felt just blah and seems pointless”. I would go everywhere just being me and wearing a cap. I have this lovely wig, but after an hour or so, it gets irritable and ya have to take it off. I think the longest I have had it on is two hours.

I was getting a snivly nose and I thought “oh god, where will this go…” by Thursday night, I was feeling pretty god awful, and had the odd chill and my temperature was steadily rising. Woke up Friday with a temperature of 38.5,,,,, and thought, crap. Well, I took a panadol, lots of water and yay, it went down, yay, no hospital. mmmmm, 4.00pm it then peaked again at 38.3 and sod it, I gave in, knowing more needles/lures ahead of me, and it sucks. Rang myself a taxi and 30m later I was in hospital, again, and it was day 7 out of hospital…….. How did I know something was going to happen?

Sure enough, they struggled to find a vein and the one they did find ended up crapping out the next day, it was blocking and stinging like hell when they flushed it cos it was leaking into skin tissue. Compounded by all this, I had these god dam ulcers on and at the back under my tongue – I struggled to eat. Previously the ulcers raising their ugly heads, I couldn’t and still can’t, eat anything with

flour in it – like bread, cake, biscuits, etc as they all are like a mouth full of powder in your mouth and everything tastes odd at the moment. I am drinking milkshakes and soups – one consolation is it will improve my lines for a bikini at the end of this darn chemo. So, hardly ate anything at all in hospital. One night, there was this god awful moan, that turned into a hair curling screaming yell, you thought their relative died or they were being tortured or something – it went on and on – for at least a good 5 – 10 minutes and ya thought the most god awful things that was happening to this poor blighter. Later I asked a nurse who was killing that bloke down the hall, and she said he had fallen over in the bathroom. Cripes damn bathrooms must have an obscene percentage of domestic accidents. This guy down the hall then repeated all this same noise the next evening, oh god, when I needed my ear muffs.

I finally escaped hospital – today ! oh what celebration. I feel like hitting the town and going loose on my MasterCard with some retail therapy and just have loads of fun. But, nope, that poor card will be buying two boring tyres and some petrol…. ho hum, it will seriously need to be cleared next pay day.

I am going to Rotorua as my friend who did Ironman, is doing the Rotorua marathon, so I am going to support and cheer her on all day – will be a blast. I will be out there with my pink pom pom, cheering her on and of course any hansom bloke I see too with good legs 🙂

Oh, goodness I haven’t told you ! My operation is on the 13th of May for my tumour to be extracted and my forearm to be replaced with my fibula in my leg and my wrist to be fused with some steel and screws.

I think it will be quite a big operation – like 4 hours or something; I will be up there for about 10 days they say. I check in on the 12th to get prepped and tested etc and then the knife on the Monday. Mum is gona stay at a hotel up there for a couple of days.

It sure is getting wintry now and I have put in a new flu in my fire – $500 – cripes it really sucks when you spend $500 on a piece of steel and looks no sparklier than the old one!! It should at least smell new or something, something a chic can see some difference! So, I will be lighting a fire tonight – yay.