Ch-ch-ch-ch-chaaanges..

I shaved my head! And I feel much better for it. It was much too depressing and messy watching it fall out, and I dont think I look half bad! Besides, I now have two rather nice wigs; a brown one bought from the cancer council wig place and a GORGEOUS pink shiny one borrowed from a family friend. I will post photos. Plus, I now have heaps of those scarvey things I wear (you know, the ones from the folkie and tree of life) which are great, and this amazing hat (thank you bethany, tess and bethany's dad!). AND a lovely red beret from Hazel. So, I'm pretty well covered (hah).

We saw my oncologist on thursday, who, after calling the solar panel people doing his house and sharing with us all his credit card number, told us the next round of chemo begins monday week. This round will last five days with only one night spent in hospital (thank god). The other days I'l go home and come back for the day and sit in the Treatment Room with lots of old people. This round has different drugs to the last, which is lovely, as these apparently dont count nausea amongst their side effects. Though I'm quite pleased with the weight loss, I really am looking forward to getting my appetite and appreciation for food back so this is quite a relief.

So, chemo is every 21 days for 12 weeks. After that, the main tumour will have shrunk down a whole lot and the little ones will be practically gone. However at this point it is expected that I'l have to undergo some surgery to remove this little bit left in my chest (as at this point it will no longer be responsive to chemo) and radiotherapy to zap the little one in my arm and possibly spine- though not much has been said about that one. After this I get even MORE chemo. Better safe than sorry. Assuming this all goes to plan, that will be the end of my sarcoma.

On that note...

After the below rant it strikes me I should also say something about how I am. I am not nearly as nauseas anymore, but still so tired. I have a new sympathy for friends and acquaintances with Chronic Fatigue Syndrome- its exhausting being too exhausted to do anything for yourself. Ventured out with the family to see Paul today which was fun but people are so loud and they smell.

There was an oddly large amount of hair on my pillow this morning. So, that part has begun. I think I'l have to shave it off before it falls out too much its too depressing watching it go.

Before I start seeing you all... I have to tell you. I am now extremely sensitive to smell. I BEG YOU DO NOT wear perfume or smellable deodorants or aftershave if you are planning to come near me. Please. With sugar on top. OR those horrific dry hand washy soaps they have. Especially the ones they have in hospitals. They make me hate the world. And throw up.

But yeah I think maybe friday I will be up to social stuff. And I think I am planning on watching gone with the wind, with FRIENDS for the first time. because if people wont do it when I have cancer then they never will. ...Maybe I shouldn't rant about the badness of the idea of cancer and then shamelessly use it to guilt my friends into doing what I want. Maybe.

The Idea of Cancer

I dont think the reason behind the title of this blog makes sense to a lot of people at first glance. And I think its important that it does. You see, I'm someone who is lucky enough to be able to say, that in my particular situation, the idea of cancer is probably more dangerous than my cancer itself.

I am not being a fool- I do not pretend there is no danger or that the coming year is going to be difficult for myself, my family and those close to me. But in reality, I have to be incredibly grateful I do not have what one immediately assumes when they hear the word "cancer". Which is in most minds a death sentence. My cancer is not going to invade and destroy the cells of my organs, it is and will continue to respond well to chemotherapy and though its quite common in the kind of sarcoma I have, it is not in or near my brain. Or even my CNS.

When you hear the word cancer you freeze and think of all those episodes of house where the cancer came on so quickly or so strong and the chemo wouldn't take and the transplant was difficult because they were a smoker and the blood type was rare etc. Or, you might think of young children with leukaemia or the elderly with lung cancer or bowel cancer or something horrible. Or women of any age with cervical cancer who lose their fertility. It is horrible and it happens all the time and I am so, so lucky that none of those are me.

You think of a growth in my chest pressing against my lung (but in no way at the time of diagnosis crippling me) which responds well to chemo and you consider my age and location and lack of complications and you dont feel too bad. As soon as cancer is involved the feeling changes. Its scary. Even though I know this the word freaks me out, and I'm sure without the here provided explanations it would freak a lot of you out too.

Yes, I am very sick. Yes, I wish I wasn't. Yes, chemo is horrible and I hate hospitals but the idea of cancer is worse than what i have, and that is why I am lucky, really.

Progress

Yay! The swelling and pain in my left arm has gone down enormously, which means the tumour is already shrinking and bit not putting as much pressure on veins and arteries and nerves and such.

Nausea is also getting better, we're getting the hang of the various medications better and working out what I can eat etc.

Still very tired, but looking forward to feeling more alive in a few days and eventually being up to wig shopping later this week. Yeah, I'm going to lose my hair from the chemo- probably within the next couple of weeks.

Thank god I dont live in america. One of the chemo drugs I'm on costs about 1mil to produce a litre. Can you believe it? But its all free here. My family would be destitute just about anywhere else in the world. That or I'd have a significantly worse prognosis.

I should have stressed in the initial post- my prognosis is really very very good. Its extremely treatable, I'm at the best age I could be and have access to one of the best health care systems in the world. Its the chemo mostly thats gonna be hard. Well, is hard.

Hoping the cube karaoke finals will fall just before my next round of chemo so I may get to compete in that after all. I'm planning on getting some absurdly colourful wig for the occasion.

Two Weeks

Two weeks ago, I was panicking about money and travel insurance and my upcoming trip to Peru. I was that bit extra concerned, as the day before I'd been diagnosed with pneumonia by my GP and was afraid I wouldn't make a full enough recovery before my departure in June.

The next day I got up and my mum drove me to the hospital. We found the place, waited, I put on the silly gown and they took the xray. I remember feeling very tired immediately after but feeling silly having to sit down after so short a period of time. The xray came up on the screen, and the nurse looked at it. And looked at it. And then beckoned another radiology nurse over to have a look. They both turned to face me, revealing the screen and two very anxious faces.

"...you are seeing the doctor today aren't you?"
"no, my appointment is on monday"
"no no, you need to see a doctor today. I'l call emergency- they'l put you right through."

The left lung was almost completely white in the xray, but the nurses didn't have any information on what it might mean so they ushered my mother and I through to the emergency room. The nurse they'd phoned was waiting for me to come through, but took a while to guess it was me- the xray she'd seen didn't match how well I appeared to be.

I was sent into the Multi-Purpose room where I had a variety of doctors and nurses come see me, a thorough history taken, many blood tests etc and then eventually a CT scan. Hours later what this came to show was that there was a large mass in my left chest, pushing down my left lung and wrapping around my aorta. Quite a jump from pneumonia. As it turned out they felt I'd do better at the other hospital, TCH, as they had specialists in the area or something, so I was transferred to TCH IN THE FROM SEAT OF AN AMBULANCE. Ambulance drivers are the most cheery people in the world as it turns out. One used to live and work in South Africa, but it was too intense so he moved country.

So, I dont remember what order things happened over the next few days- the initial diagnosis was some form of Lymphoma, most probably Hodgkin's, which is very very treatable and curable and the one delta goodrem had, which somehow made it feel a bit better. There was a biopsy on the monday, which took a few days to turn up results. When it did, it showed the initial diagnosis was not quite right.

As it turns out, I have what's called a Primitive Neuroectodermal Tumor, but since its not in my brain (thankgoodness) its peripheral, and therefore almost identical to Ewing Sarcoma. Well, there are two actually. The main one in my chest, and another much much smaller one in my left arm somewhere. Its quite uncommon, with dr's in Canberra seeing one case every year or twoish. Thankfully its not so uncommon there is no precedent and they have treatment and all that.

Dont stress, its not a big cell invady type of cancer. It is not in my lung, nor will it sneak into my lung or other organs. The damage it does is entirely mechanical, getting in the way of the lung and major vain and such.

The primary treatment is chemotherapy, which I started last friday, which is brutal. But it should begin to work very quickly, with rapid shrinkage of the tumours. After they shrink, it gets more complicated with making it disappear completely and they have to wait and see and consult with Sydney docs to work out if radiation therapy and/or surgery and so forth will be necessary.

I was discharged from Canberra Hospital yesterday with lots of pills and a bit of optimism from my Dr, who is really very good.

My temperature was all over the place last night (so we think, though we didn't have a thermometer at the time to check) so we headed into the nearest emergency room to get checked out. After many horrid hours of failed blood tests and anxiety and nausea and more xrays, they decided I didn't really have an infection (which is baaaaadddd at this point following chemo). So I was sent home (with MORE pills) but some more peace of mind.

So that's the last two weeks. Its a bit scary, and a bit huge. And I am too tired and queasy right now to reply to all the lovely messaged you are sending, so I'm going to keep this blog to keep you all updated at once, without having to fill facebook with gloomy cancer stuff. Too much. But yeah, life turns out to be too short to fear people judging you for over sharing on the internet. I think it will help me communicate whats going on to my friends, and help me keep perspective and a sense of clarity and continuity.

Peru is cancelled, the chemo will last about 12 weeks and from there its all unknown. But I've moved my program with World Youth International forward to next year, so I will just have to be better by next November. Which I'm ok with.