Cancerous Dating, Radiation and Everything Else

Cancerous dating - no, fear not, I am not about to start spouting vitriol about my ex. Quite the contrary. In case you have been blithely ignoring all my subtle-as-a-sledgehammer hints, there is a new man on the scene! Yes, indeed, that is what those references to dates and kissing means. Who knew!

Now, some internal turmoil about how much to reveal here. This is a blog about cancer, and the Pussycat Dolls, and anything else that happens to be on my mind, but primarily about cancer. And I have to be honest, there are some unique aspects of dating with cancer. So perhaps these should be documented? Then again, it all gets a bit reality TV if I start documenting my relationship online. Then there's the whole issue of how online personas can get you into trouble down the track.

Regardless, I do need to come clean about why I seem so indifferent to this round of treatment (much more interesting things on my mind). You remember the cocktail party I wrote about six weeks or so ago? It really was a very good night... The New Man (TNM), when confronted with one final strawberry and four ladies each with a glass of champagne all looking at him expectantly, made the correct decision, and the rest, as they say, is history. (We will ignore the later incident with the pizza. Strawberries trump pizzas.)

So rather than being preoccupied and depressed at the (admittedly rather crap) prospect of a brain tumour and all the subsequent treatment, I have been enjoying the euphoric high of a new relationship - the calls, the text messages, the dates, the flowers, the butterflies (of the tummy variety, he has strong views on animal ethics). The brain tumour is a mild irritant at worst at the moment.

So who is he, what does he do, etcetera etcetera? Let's leave him his privacy, shall we? After all, just because I choose to document my life, doesn't mean he should expose his. (Besides, he reads the blog too, you know, and then he would find out how amazing I actually think he is.) But he makes me laugh - and isn't afraid to poke fun at the cancer thing - and I definitely love the fact that he challenges me intellectually!

But yes, dating with cancer definitely poses some interesting problems. But, as TNM has pointed out (yes, emotional maturity too) maybe the issues that we had to confront early are still there in other 'normal' (stupid word) relationships, they just tend to be more hidden. It is an interesting dynamic when the scary question is no longer 'what if it doesn't work?' but 'what if it does?'. And it does pose ethical questions - how much information to disclose and at what point? There is a fine line between deception and too much heavy stuff too soon.

A couple of people have unkindly asked "Does he know exactly what he's getting himself into?" And yes, I think he does. He is a highly intelligent, emotionally mature adult and he has thought through most of the implications and is still making the choice to be with me. Apparently he agrees that I still have something to offer, and that it is perhaps premature for me to go and sit in a cave by myself until I die. (The premise behind the cave thing is, I presume, to stop getting close to people so that they won't get hurt when I die. I would like to think though, that if I actually went off to live in a cave, people would miss me anyway, and I would be as good as dead. So why not stay and make memories with people?)

Anyway, we are trying to tread the fine line between making sure we address these issues and not over-analysing and just enjoying the time we spend together. But I am very happy, and this is a particularly joyous time for me.

And now that I officially sound like a lovesick schoolgirl, let's talk about boring cancer stuff.

Dad, Beata, Soph and I went to the Wesley on Wednesday morning to start radiation. Unfortunately, no one there had thought to call down to Sydney to get the records of my last radiation treatment to make sure they weren't over-radiating anywhere, they hadn't booked me into a machine and the doctor hadn't arrived yet. So in the end, no radiation took place, although they did mold me a mask and did some preliminary scans.

Thursday morning radiation started properly. I need to be honest - after weeks of not expecting radiation to be particularly stressful, I did lose it when radiation actually started. I was bolted down into the machine (via facemask rather than actual head bolts this time - big improvement!) and then it all began. I wasn't expecting to be able to feel anything - I never have before. But there was a really bright light which made my eyes water, and a feeling similar to the one when you get dumped by a big wave - a huge flood of something rushing past your face and in your mouth and up your nose. It wasn't quite chlorine or salt water or antiseptic - but a flood of something of the sort. Anyway, it was a bit of a pathetic panic - I didn't move or anything, but I got the surge of adrenaline and worry that constitutes panic. I've done it another couple of times and it's better now that I know what to expect, but still a bit off-putting, I guess the word is.

Still, I'm feeling fine - perhaps a little bit more sleepy. I slept till 11am the other day - solidly through till 11, not dozing. Which is, believe it or not, unusual for me. Amazingly, I don't sleep all morning and then watch Oprah for the rest of the day. It clashes with Jerry Springer. But then again, I'm not expecting to feel any effects for a couple of weeks yet!

I am getting a little paranoid about brain function though. It seems to be working fine - I even proved it in Friday's Sydney Morning Herald - but I am starting to get nervous about repeating myself or forgetting things. It's also hard to tell if people are just toying with me... And it's not nice, people. Yes, TNM, that means you. And you too, Reg. But my vision is still perfect and I think my brain is still in good shape. Ask me again in a fortnight though.

I am getting a little paranoid about brain function though. It seems to be working fine - I even proved it in Friday's Sydney Morning Herald - but I am starting to get nervous about repeating myself or forgetting things. It's also hard to tell if people are just toying with me... And it's not nice, people. Yes, TNM, that means you. And you too, Reg. But my vision is still perfect and I think my brain is still in good shape. Ask me again in a fortnight though.

I am getting a little paranoid about brain function though. It seems to be working fine - I even proved it in Friday's Sydney Morning Herald - but I am starting to get nervous about repeating myself or forgetting things. It's also hard to tell if people are just toying with me... And it's not nice, people. Yes, TNM, that means you. And you too, Reg. But my vision is still perfect and I think my brain is still in good shape. Ask me again in a fortnight though.

Well, I thought it was funny... And at least with the new article I am unlikely to sell out completely in a couple of years. Not unless TNM can rustle up a tower decorated in Jessie-red with a well-stocked library and a herd of antelope nearby.

I went to see a lawyer last week as well. And ended up with some guy who didn't shake my hand and couldn't look me in the eye. If he is going to charge as much as he is for 'professional services', then he should at the very least be professional.

In the meantime, I am enjoying spending lots of time with Beata and Sophie. Sophie is at a lovely affectionate age and it's so good to spend some good, quality time with her. Poor Beata is feeling a bit taxi-like though - I'm not supposed to be driving in case my brain explodes or something (the very presence of a brain tumour suggests the possibility of a seizure - this is the only reason I can't drive, everything else is working fine) and we do need to drive all the way out to the Wesley every day! Still, it's good to spend some time with them.

So at the moment it's radiation every day for the next three weeks, with weekends off for good behaviour. And enjoying good company the rest of the time.

By the way, you all had a narrow escape last night. Three cocktails and a rather death-filled episode of Gray's Anatomy meant that I got a little maudlin and thought about posting. Thankfully the three cocktails kicked in and I went to sleep instead.

My life is so blessed at the moment. God is good. May he bless you as much as he does me. May he grant you the strength to get through the day and the serenity to enjoy it. May you know his great love and peace as you journey through each day.

Much love to you all.

Yours joyfully (what do you know, I do listen during Ian's sermons!)

Jessie xoxoxo

Frankenstein's Monster

Well, it's all over, and I probably didn't need to worry much about it at all. I think it's just the whole fiddling with my brain concept that I was worried about. Ironically, the three weeks radiation that I start next week is more risky, but because I've had radiation twice before, and the effects will be slower, I'm not as concerned. How strange.

So Dad and I arrived at the Wesley by seven, to find that the cafe wasn't going to open until 7.30. No coffee for Jessie. No preliminaries, the neurosurgeon, radonc and two nurses march me into a CT room, sit me in a wheelchair, tell my father to leave the room and launch straight into things. Four people all doing things to the top of my head just outside of my sphere of vision, and none of the things were pleasant. Basically, pumped me full of local anaesthetic, which is unpleasant in itself - you are not meant to inject into the head. It feels wrong, not to mention stings and burns like buggery. They then drilled four holes into my head (up against my skull, so through the skin but not through the bone), put in screws, screwed them in tightly and put this thing in.



Doesn't look or sound pleasant? It wasn't. But at least it was all over quickly. They then took me into a CT machine and bolted the contraption onto the bed. I was actually very worried about this bit, since most positions involving my neck tend to make it ache quite a bit. (Even kissing a man taller than me, although I tend to put up with that pain a little better.) Anyway, off topic - the suspended in mid-air by weird frame screwed into head was not as bad as I'd feared. And again, it only lasted ten minutes or so. They took a full set of scans of my head and then went off to develop the actual treatment plan.

The worst bit of the whole day was sitting around for seven hours with the contraption on. In a small room. Unable to lean my head against anything and thus rest my neck. But if the worst bit of an operation is the waiting, you are doing mighty fine.

Eventually, at about three, they took me back into a room with machinery and bolted me back onto the table. The actual treatment was just like a radiation treatment - think x-ray machine that moves around you while you lie on a table - and took about half an hour. So completely non-invasive and pretty unthreatening. Although I confess I kept opening my eyes to make sure I could still see. Mild paranoia.

Afterwards they took the gizmo off again - which hurt nearly as much as putting it on. Releasing that pressure to the skull feels exactly like increasing pressure to the skull. But again, if that was the worst that it got, I am doing very well!

I even got a Brave Wounded Soldier Bandage to make sure people gave me love and sympathy (well, for 24 hours, I'm not walking around with that on my head!)



I went home completely fine, feeling good, bit of a headache perhaps, but even managed to go out for hot chocolate with Amy.

So actually feeling a bit of a fraud - it was hardly an operation and I feel a bit guilty at the fact that everyone called to wish me well and then called to find out how it went! It went very well, I feel completely normal :)

Radiation starts on Wednesday... more to follow!

The (Far More Interesting) Plan!

Well, I'm off to the Sunshine Coast today...

I love window-time. And this window-time is proving to be fantastic! The whole brain tumour thing seems kinda surreal... it doesn't actually seem possible that next week I'm going in for surgery and then radiation.

Anyway, that's something to think about next week!

Thank you for your comments, as usual... I feel a bit guilty that I have no real news for anyone at the moment, but if I'm going to start feeling guilty about feeling good, then there's something very wrong with this whole setup!

Now, as MJ has so astutely pointed out, my surgery falls on Marshall Ledbetter Day, and I hope that we are all getting excited about the opportunity to commemorate Marshall's great feats. I know that the Palace has an exciting activity planned... and if I wasn't otherwise occupied with the seriously funkily named stereotactical radiosurgery (I just love to say it, I think I will enjoy undergoing it slightly less), I would definitely be in Sydney celebrating it with you! (Google it, folks.)

Be well, enjoy your long weekend (I know I will) and there will be more news of the more dramatic kind (well, let's hope not too dramatic!) next week!

God bless,

Jess xoox

PS Gill, I hear you've been taking tips from Russell?

The Plan!

Let's have a moment of vain introspection here. What is my best feature? Is it my eyes? My lips? My hair? (Not at the moment.) How about my breasts? It's certainly not my stomach. (It's nice that I have such a healthy, over-inflated ego that I can actually list a number of possibilities to answer that question.)

It's actually my brain, I think. My brain is that glorious organ that lets me read, enjoy conversation and engage in (occasionally) witty repartee. It lets me write this ridiculous nonsense. It lets me have an ongoing dialogue with my conscience, whose name is Parenthesis (I've worked out that that's who I'm talking to every time I open a bracket). And, if you want to get really fernickity, it keeps me alive.

So, the plan is up! I saw the neurosurgeon on Wednesday, the radiation oncologist on Thursday and the stereotactical radiosurgeon on Friday (today). Now that is a cool title, and I'm going to use the words stereotactical radiosurgery A LOT. You have been warned.

The neurosurgeon says that we can do surgery if we need to, but to keep it as a last rather than a first resort. He said that I'm probably a candidate for stereotactical radiosurgery though. (Don't worry, I will explain what it means eventually. I just like to say the words lots.)

The radonc (radiation oncologist - in this case, the shorter version is cooler. Go figure.) said that while we can radiate the tumour exactly, we are better off also radiating the whole brain as well, to prevent growth of any new tumours.

The stereotactical radiosurgeon (actually, I think she's just a radonc who happens to work in stereotactical radiosurgery. I don't think they are really called stereotactical radiosurgeons. Although they should be.) said that if it's just an isolated tumour, then stereotactical radiosurgery is a good option for me.

So what is stereotactical radiosurgery? Read the link, this blog is only really for the interesting stuff. Basically, it's a one-day procedure. They will bolt a frame into my head (yes, that's the really yuck bit) and then take a bazillion scans, then map out the exact location of the tumour, target it, then shoot radiation precisely at it from all angles using advance computer somethingorother. And then take the frame off my head again. I will be completely fine again the next day. One day brain surgery. What's not to love?

A week or so later I will then start whole brain radiation, which to be honest is the one that scares me more. It will be a low dose of radiation to the whole brain over three weeks to prevent the recurrence of any more tumours. It will have the usual radiation side effects - fatigue, hair loss (after I've spent the past month growing it too - typical), redness, maybe some nausea. These will all go away after a month or two. There is also a risk of some long-term (and permanent) effects - about a 25% risk. This might mean that I would lose my ability to concentrate for large periods of time and also some short-term memory loss. Good thing I have my name tattooed on already, really. And I'm sure someone will remind me who Amy is.

Jess: This cereal is fantastic! What is it?
Mama: Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!

(Next day.)
Jess: This cereal is fantastic! What is it?
Mama: (Sigh.) Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!

Yes, I'm very nervous about the possibility of the permanent side effects. The certainty of the problems I would have if I didn't treat the tumour worry me more though.

I am feeling really positive about this. I think this will be good. Well, not good as in enjoyable, but good as in effective. I just have a good feeling about it, and I really like my new team (I'm now out at the Wesley for all of this).

I am going in for surgery on the 14th June. It was supposed to be the 7th, but I am going up to the Sunshine Coast for the long weekend with a big contingent of people and we are going to 'recreate Caloundra' (a trip from several years ago) and have an amazing weekend. We have rented a penthouse apartment with eight-person spa and rooftop terrace. There may or may not be some alcohol consumed. There will definitely be conversation, witty repartee and some great company. It will be good. So I put the desire to have fun over the desire to have tumour removed and delayed the surgery for a week. How much damage can one little lump do in a week? This is my post-chemo holiday and celebration. I'm going to have fun, dammit.

Anyway, I am feeeeeeeeling good. Loving my window time.

So that's the update, and that is the Plan, folks!

Thank you for the review on the Secret, Amanda!

Take care of yourselves...

God bless.

Much love,

Jess xoox