Garcon ! is that a hair in my soup ?

Well my hair is still progressively coming off since last Friday. It's mostly noticeable on my scalp at this stage, the hair roots actually hurt a bit as I run my hand through my hair as it breaks off. It's not the best look, kind of like a half plucked chicken is the best way I can describe it..

I want this blog to be an honest account of my journey so I've asked Vee to take photos of me through this ordeal as I want people to see exactly how bad it can get. Anyway I can joke about it now but I'd be lying if I told you it didn't bother me, I can't wait for all the hair to be gone, the transition stage is definitively an ugly stage.



Also I found this cheap T-shirt on the weekend, I probably wouldn't normally have bought it but I thought it was appropriate under the current circumstances.

Fallout

If I've been quiet lately it's because the last few days have been emotionally more difficult. You know when you hear about someone fighting Cancer, it's not just about the physical challenges that it entails but it is also mentally very challenging.

For the most part you try to keep a brave face, you try to find distractions and sometimes you even manage to joke about it but whatever you do the reality of things is always somewhere at the back of your mind.

It's a constant mental battle, a gnawing fear that you have to keep under control the best you can, because you can't let it take over, I don't know how long I have but I need to fight myself mentally in order to make what little time there is one to remember.

Usually you manage to feel almost normal for a few days and then something either said or read, a passing emotion, a stranger's happiness, acts as a trigger and the fear comes back.

When I went to see my surgeon last Tuesday he admitted that they couldn't compare my case to any other as no one had ever presented that way before. He also explained that if the Chemo failed to reduce the tumors, they wouldn't operate as it would be pointless. So I guess if the Chemo doesn't work, then they may try a different regimen and if that doesn't work...well I'd be looking at palliative care.
Certainly hearing him saying that they wouldn't operate brought everything back up but I feel that I need to ask those questions even if I don't particularly like to hear the answers. Knowing what to expect is helping me gaining a little control of whatever is left.

I had nightmares two nights in a row after this appointment, the first one I woke up both Vee and I as I screamed aloud during my sleep. I vaguely remember being alone in this dark house and hearing voices coming from the different rooms. The second dream I was a soldier during WWII and a German soldier was approaching towards me, I aimed my gun and fired but the barrel was empty, I fumbled into my pockets and finally found the cartridges but I couldn't load them into the gun, my hands were shaking, I was terrified, when I woke up, I was cowering under the blanket.

Everything you do in life is geared towards learning to live, death is not only a taboo subject but it's something we tend to associate with old age. There are plenty of people who can give you advice on how to live your life but there's no course out there teaching you about dying young.

How can one's mind come into term with witnessing one's own demise ? Of course we all need to accept it at some stage, as that is the only absolute truth in life but It would have been nice to have more time to think about it.

I was only joking last week how I still had all my hair and felt almost cheated but this morning Vee found a few patches missing at the back of my neck and then when I had a shower I noticed a bigger patch above my ear....
Vee also found more hair in the bed on my pillow...I didn't feel like joking for the first few hours after that....

Now I feel a bit better but the patchy hair definitively gives me a poxy look, It's kind of weird, I mean, you look sick but it's not the sickness that makes you look sick it's the so called antidote !

Jackpot

Not only do I get a rare cancer but I also get the jackpot as it appears my rare cancer presents itself in a rare manner...why couldn't have I won the lottery instead, surely the odds were better!

Prof X called to advise yesterday that the biopsy review done by his staff also confirmed LMS but he admitted still being rather puzzled by those results.
His advice was to continue on with the current treatment and then reassess after my second lot of Chemo. If the current treatment doesn't show any improvement he suggested that perhaps a new biopsy or even surgery to remove a bigger sample ought to be performed and the matter re-examined.

I have to admit that no matter how positive I try to be, it's not the kind of news that exude confidence. For all I know I could be the first case in Australian history...My GP often says that I am most likely the talk of the town in medical circles.

I've got an appointment with my surgeon tomorrow, and although it is still a bit early in my chemo treatment I've got a few questions regarding possible future surgery which I never really got a good opportunity to discuss with him previously.

Well part of me was hoping that I could tell you that I had Germ cell cancer even though the odds weren't really in my favor but it wasn't to be.

Does my head look big in this ?

"Does my head look big in this?" is going to be a segment showcasing all the hats that will keep my head warm over the next few months.

This week I received a genuine all American beanie made in Chicago, Illinois. A big thank you to Mel. Most clothing items you buy in Australia are usually made in China so to be the proud owner of a real American product makes me all warm and fuzzy, as much on the inside as it does on the outside.

Positivity

People react in strange ways when learning that you have cancer. Some people will offer to help in any way they can, some people will pretend nothing happened, some people are really inquisitive and others are just convinced that positivity is the key to beating the disease.

There is no proof whatsoever that a positive attitude while battling Cancer is going to change you physically for the better. In fact if anyone truly believes that, it would imply that those who have passed away only have themselves to blame.

When the word "positivity" is brought up by someone in regards to my Cancer I must admit that it makes me cringe.

Sure it's nice to have a good outlook on life in general whether or not you have Cancer but some people need a serious reality check. Walking around with a cheesy smile chanting I can do it ! I can beat this! is not going to make my life better, the plastic smile machine just isn't for me.

There are days I feel like shit, I'm not being negative, I'm just being honest.

There are also people who while not battling cancer themselves feel like experts thanks to spending hours watching Oprah's TV show and have a lot of assvice to offer. It's not because one person wrote a book called "how I beat cancer by drinking my own urine" ( I made this up..) and this has been presented a number of times on a current affair show or published in the latest health nut magazines, that it is the answer to every Cancer patient out there.

I know that people mean well when they say " you just got to stay positive", it's just that it doesn't sound right. There are going to be times when I will be feeling positive, times when I will be feeling down, times when I will just want to be myself , times when I will be strong, times I will be angry, times when I'll be realistic and a time to face the truth.

Asking me to remain positive at all times is nothing short of denying me the right to express my own feelings, it's just adding to the pressure of living with Cancer.

Feeling Blah

I'm sure some of you are awaiting to hear about my visit with Prof X, well first of all let me say that it was a tiring and difficult day not only because of my post Chemo symptoms but mostly due to the fact that my Dad was facilitating the appointment.

My father and I don't quite communicate on the same wavelength and we rarely spend time together so this was an extraordinary day to say the least. Don't get me wrong, I think that my Dad is a great man who has achieved a lot in his lifetime but there is no hiding that he has never really been a family man as such.

So we were originally seeing this guy to see whether I would be elligible for inclusion into a trial, Prof X looked at all the info and scans and then went on saying that the trial thing was the easy part.

Then he proceeded on saying " I don't want to give you false hope but I think that for me what is important is to make sure you have been given the correct diagnosis."

As I stared at him with a stunned mullet look on my face he went on saying that my scans did not present like a Sarcoma, he said normally Sarcomas do not jump from the muscle to the liver, rather from a muscle to the lungs, it is also rather unusual for a sarcoma to go to a lymph node. On the other hand he added that it appeared to behave very much more like a germ cell cancer.

Basically if it's a germ cell cancer then my prognosis is very favorable as long as I'm receiving the correct treatment, however this was just a theory and he was very clear that he didn't want to give me false hope.

I've had more blood tests done and at the moment I'm awaiting to hear back from his office regarding a final diagnosis. It's like one step forward, two steps backward.

Apart from that I'm finding it difficult to sleep, I probably average about 3 hours a night, I feel hyper up until the afternoon, cannot stop eating, Vee says it's probably due to the Steroid tablet I take in the morning.

I keep on checking out my hair everyday to see if any has fallen and almost feel disappointed when I realise that I'm going to need yet another shave...

I think the whole lack of conclusive diagnosis by the medical profession has again raised its ugly head, its now been more than two months since we know that I have "something" but this is getting frustrating.

There are three possible outcome to that, it's LMS, it's germ cell or it's something new that no one has ever been diagnosed with before....

Winter is here

It has been a rather cold day today around here. I rugged up and went for a short walk in our local park which happened to be deserted.
I spent most of my day working on and adding new works on my Redbubble photopage, I drank lots of warm tea which in effect is unusual for me as I've always been a coffee person but I find the taste of coffee rather distasteful since my Chemo.
It's really strange how it affects some of your senses, another thing that bother me at the moment are bright lights especially neons like in the supermarket meat section etc...
I can tell also that something is happening in my mouth, I've been doing mouth washes on a regular basis but I've noticed that I may already be getting some ulcers....I know I've had a bit of a rough start with my Chemo but I am also very well aware that I am only starting and that other nasty effects are likely to plague me for the next couple of weeks or so....

Apart from that I got a call from my Dad who has been doing some good work in the background and has managed to secure us an appointment with Prof X, a renowned soft tissue sarcoma Australian oncologist who oversees all clinical trials in the state and works at one of Sydney's major hospital leading oncology unit.

The appointment is tomorrow, I'm not going there with any expectations but any chance to getting a foot in the door early or at least getting a second opinion wouldn't hurt. At this stage any info from the experts is welcomed.

To hell and back

The nausea did catch up with me on the third day to the point where I was loosing consciousness, I even managed to bump my head on the bathroom sink without realising it at the time. When I went to my last session, I was feeling a bit shiverish and a tad bit nauseated but the nurses kept on saying that I would be ok.
When I got home, I set up my alarm to remind me to take my medications and then had a bit of a snooze. Shortly after the phone rang. It was my work colleagues calling to see how I was going, it was great to talk to them, I still felt good at this stage.
I went back to bed and awoke with my alarm at 3pm, time for my MESNA tablets, I went to the kitchen and downed the 5 tablets given and then things got a bit blurry after that.
I remember feeling sick and sitting on the edge of the bathtub, I was trying not to throw up everywhere and doing my best to keep it down and the next thing I remember is waking up on the bathroom floor having no idea as to how I got there. When I dragged myself back into bed, the clock said 3.15pm but it's hard to say how long I was out for though.

I stayed in bed all that time until Vee got home from work and found me there. I remember apologising for the mess in the bathroom and no sooner had she cleaned it up I felt like throwing up again in the laundry sink where I passed out in her arms....I could hear a voice call my name from far far away but I didn't know whether I was dreaming or what, it took me a while to regain consciousness.

I don't know about angels in the after life but Vee certainly is my angel in this life. An ambulance was called and I was sent to Oncology unit of a local hospital for a 2 nights stay where they pumped me up with anti nausea drugs and loads of fluid non stop as I'd gotten dehydrated.

I left the hospital yesterday morning, the ride in the wheelchair from my hospital room to the car outside was emotionally difficult, I felt dirty, toxic and ashamed of what I had become, I felt dehumanised. I can't tell you how much I enjoyed the hot shower that followed once I got home.

It's another beautiful morning today, my body feels like its 1000 years old, everything I do happens slowly, everything I eat is like discovering a new flavour for the first time, even talking sometimes can be a challenge but I'm still here and I'm feeling stronger with every minute passing.

I would also like to thank all of you from the bottom of my heart for your kind words and offers of support to both Vee and I.

Chemical warfare

Same regimen but this time without the Doxorubicin, and I feel a lot better for it, so far no sign of nausea. Jan my nurse told me to take my other medication should it manifest itself again.
I finished my treatment at 1.00pm and then at 2 they booked me in for a heart scan as one of the drugs I'm on can affect my heart so they'll need to check that on occasion...( charming isn't it?).

" The beginnings of the modern era of cancer chemotherapy can be traced directly to the discovery of nitrogen mustard, a chemical warfare agent, as an effective treatment for cancer."
Courtesy Wikipedia

So basically they are poisoning you and then giving you drugs that are anti this and anti that just so that it doesn't totally kill you...no wonder it has so many side effects.

Life is a paradox.

D-day

Well today I was given my first chemotherapy session. The Nurse looking after me is a really nice older lady who's been working there for 11 years. She was very helpful and answered all our questions.

So how does it go ? I hear you ask, well first you take a seat, then the nurse comes around and put a cannula in your vein as the drugs will be dispatched intravenously. If your veins go bad then they'll have to put in a permanent fixture into my arm but my nurse said that my veins appeared good so hopefully it shouldn't be necessary.

Firstly they hook you up with some saline followed by an anti-nauseous agent called Novoban, I was also given some Maxolon ( anti-nauseous also) in tablet form for home should the need arise.

Then prior to the actual drugs being injected there was some serious cross checking with another nurse to make sure that I am receiving the correct drugs and dosage.

The first drug ( Doxorubicin ) was injected manually through a plastic syringe connected to the main line, it had a bright lolly red colour that affected my first couple of pees afterwards. This only took about ten minutes and apart from a cold sensation, it certainly was not painful.
Mesna a drug to protect my kidneys and bladder was given shortly after and this was then followed with Ifosfamide which took about two hours to go through.

I was given some Mesna in tablet form to take at two intervals today as well. All in all, we arrived at 9am and left at 1pm.
Halfway through my treatment I felt kind of high, by 2pm I felt mildly nauseated and by 6, I felt like I'd just woke up with a massive hangover, we had dinner at 7pm and it got progressively better after that.

Tomorrow I'll be starting at 8.30am and should be in there for a bit longer as the drug regimen will slightly different.

Buzz cut

Yesterday I had asked my sister in law who used to be a hairdresser if she would mind shaving my head. My hair was already short and in the past I had had even shorter hair but I'd never had it shaved entirely.
Since it's something that you don't do often I suggested that they give me a Mohawk to start with, to the delight of my teenage niece, and then creativity took over, here are a few pics of before, during and after...
It was a great day, my in-laws came for lunch and then more of Vee's family came around for dinner, we ate, drank and laughed a lot.

This morning, I shaved my goatee off and I now look like a tibetan monk, who knows, I may decide to keep on shaving my hair long after my chemotherapy treatment ends, as most said that it suited me and I tend to agree.

Camp Chemo

On Tuesday I'll be starting my Chemo treatment thus stepping into the unknown. You can only read so much about any subject but nothing beats experiencing it first hand.
For those who don't know, Chemotherapy is not choosy when it comes to killing cells, so while it tackles Cancer cells it also kills the good stuff resulting in an array of potentially mild to severe side effects. Hair loss is one of them but so is a higher risk of infection something, I'm most worried about.

Part of our shopping included buying products that may be helpful during my treatment. It reminds me of when you're a kid and you're going to camp and your mum makes a list of things you must take with you except this won't be much fun.

Antibacterial soap: No water needed. Just like in hospitals, it evaporates as you rub your hands with it. I got a big bottle for home and a small one to take with me should I venture out.

Sodium Bicarbonate: Used for daily mouth washes to prevent (hopefully) mouth ulcers.

Lip Balm and sun block to protect me from direct sunlight.

Baby shampoo: I know this may sound a bit strange since I won't have any hair but Vee read that it is good to massage your scalp with it...anyhow it can't hurt.

I also bought a 2008 diary just so that I can keep up with my appointments, at this time of the year they're real cheap!

If anyone can think of anything else please share.

Dysfunctional

I got pretty upset last night after talking to my brother over the phone. My family has been dysfunctional from my early teens and is spread between two far away continents. You'd think that me having Cancer would bring people together but nope, it's the same old feuds, resentment, jealousy and revenge that makes an episode of "Days of our lives" seem like a really simple story.

Everything is always complicated with my family, my father doesn't talk to my brother, my brother barely talks to my father and resents my mother and I'm sick of doing the mediating, beside I've got enough on my plate at the moment.

Today my better half and I went shopping and I managed to forget about everything for about a couple of hours, we stopped for coffees and "Krispy Kremes". I figured that this is my last weekend of my life as I know it and that I should not feel guilty about buying things for me or eating things I probably shouldn't be eating.
Shopping goes a long way as an adjuvant therapy for a lot of things...

Time

When I woke up this morning, I was surprised to find that my wife wasn't at home. I looked in our home office and saw a note on my keyboard and thought that she might have gone shopping although it seemed unusual. I took the note and read what to find in the fridge for my lunch and then it dawned on me that today was Friday and not Saturday as I originally thought !
With all that is happening lately I'm loosing track of time, Cancer must have its own independent time zone.

Orientation day

This morning I started to feel the fear creeping in as it came to me that this was all too real. I guess my mind is still trying to cope with my diagnosis and I tend to see myself from a third person point of view when people talk about my cancer. By 11h00 am I felt terrified but it eventually went away by early afternoon.

Today was "Orientation day" which consisted of a short movie about Chemotherapy and a general tour of the facilities, although I'd already read quite a bit about Chemo I did learn new things. I got weighted and measured and saw people receiving their dose either sitting in a recliner or lying down in bed. It had a very surreal feel to it.

I heard all about the possible side effects but I think that no matter how much info you read nothing can really prepare you as it all depends on not only drugs used but also dosage and cycles etc... I tend to expect the worse and hope for the best but is what I think to be the worse going to be anywhere as bad as the real thing ?

Champagne

Champagne starts with a "C" and so does Cancer....

Who would have thought that an innocuous glass of crappy Champagne would have propelled me into a scary world of so many unknowns. I rarely drink at the best of times but we had had this bottle of bubbly for a while and I thought to take it with us to celebrate our holidays last February. I only had one glass and was sick during the night ( my wife reckons it was off). Two days went on without any other effects and then I started feeling somewhat nauseated after each meal..
Back at home, I went to see my GP who gave me some tablets and an ultrasound referral in the event the nausea/pain did not clear by the end of the week...anyhow to make a long story short the ultrasound revealed a large tumor in my liver and another mass in my Psoas muscle.
It was thought originally that it was a Testicular cancer that had metastised. Not only did this diagnosis turned out to be incorrect but all blood and biopsy tests came back negative and was therefore told that it was rather unlikely to be Cancer but rather some form of infection. I was eventually admitted to the hospital for further testing and on results from a core biopsy of my Psoas muscle and a following P.E.T Scan was finally diagnosed with Leiomyosarcoma, (LMS for short) a rare form of soft tissue Cancer.
The PET scan revealed further smaller tumors in my hip, neck and lung. My first cycle of Chemo will start next week.

I've learned a lot about Cancer in those last couple of months, I've also learned a lot about diagnosis and how hard it can be to get it right when your disease is rare. I used to joke with my wife and GP that perhaps we could send over my story to the script writers of the popular TV show House.

Often people will say the silliest things without realising it....here are a couple that I've come across so far...Please have a chuckle if you recognise yourself, I certainly have.

"I've got good news ! you can pop the champagne ! It's definitively not Cancer!"
Here goes the C word again.

"We thought you may have had X disease meaning we could have sent you home with a handful of antibiotics and be done in a matter of months but unfortunately you have LMS."
Was that supposed to make me feel better ?