Sunday, November 14, 2010

Interrupted

Forgive me for the stream of consciousness here. But I'm thinking in five minute blocks at the moment. This post has taken me five hours.

So, Jeremy and I are engaged. That happened on the 1st November, and was just a really perfect, happy moment. The ring is gorgeous, the proposal was spontaneous and sweet, the wedding we're looking at will be beautiful. But, life interrupted.

A week later, almost to the hour, at an appointment that I thought was simply to take the stitches out, I found out that a cyst I had removed from my upper left arm was not actually a cyst but most likely a Liposarcoma.

Cancer.

And a particularly rare one. Not news I was in any way expecting. Jeremy was so little expecting it he was reading a Monthly magazine and didn't hear a thing and I had to repeat everything my Doctor had told me.

The one time I do not want to be a special snowflake is when I'm looking for treatment options and next steps with Cancer. Liposarcomas are rare. They make up less than 1% of Cancer diagnosis's. The type we think I have? Makes up 9% of that 1%.

Because of its rarity, the pathologist who'd examined my PretendCyst for the Doctor (With free "extremely worrying" commentary on the growth rate) needed to send it to an expert. Which, it turned out, was in Perth. And its not like they can fax or email across tiny slivers of my PretendCyst, they have to be physically sent. Which meant that the "We should have the results on Friday" bit became "Mid next week at the earliest" becomes "Sometimes these things take time", "Oh, okay we'll send it to a lab in Kew, that might speed things up"

I was supposed to have more tissue taken out on Thursday to improve the chances that we had a margin - that's one of the other concerns at the moment - because we were operating under the assumption that it was a Cyst, there is very, very little margin. But the surgeon I spoke to early Thursday morning cancelled the surgery, because he wants the exact type and Grade of the Cancer nailed down before we do anything. And that's fine. More speed, less haste, as they say. Depending on the exact type of Liposarcoma I have (Or whatever it is that was masquerading as a cyst), the next course of treatment could differ wildly. I'm hoping, at this stage, to get away with more tissue being removed, a couple of "Lets confirm it hasn't spread" scans and some Radiotherapy. If not, we'll cross that bridge when we come to it.

I was extremely lucky in two things; My doctor is thorough, and sent off to pathology the PretendCyst even though he was firmly of the opinion that it was nothing to be concerned about and I basically told him not to bother. Secondly, when he got the report he referred me to a Plastic Surgeon who has worked at the hospital that has the only dedicated Sarcoma multidisciplinary team in Melbourne. He's one of the very, very few surgeons in Melbourne who knew exactly what he was seeing when he looked at the Pathology report, and generously took twenty five minutes out of his day to patiently explain everything to me, and of course to Jeremy. He also knew that waiting for the final Path report was the best thing to do, and had no hesitation in making that hard call an hour before the scheduled start time, and explaining it to us.

For now, I am going to be completely honest and say I don't think I'm coping well. Or that I have absolutely no idea what "coping well" entails, and whether I'm near the mark or not. I'm absolutely exhausted. I'm not sleeping well at all, and the tension is just so energy sapping. I'm tired yet I can't sleep. I'm finding it hard to concentrate on anything for more than a moment at a time. At the moment, Jeremy has been fielding the phone calls and doing the badgering that needs to be done to line everything up, because he is more focussed on action and I'm more focussed on the information. I need that filter so I'm focussed on what helps me be positive, and he's not afraid to step in when I need it.

What is freaking me out is that this was on my upper arm and protuded out of my skin like a clear, tannish mole thing. It seemingly appeared overnight, but it just didn't look dangerous. And the Doctor and I left it for four months and I watched it grow. We were conservative in taking it out when we did - we had absolutely no reason to think it was anything other than a cyst, no reason to take it out at all, really - but I watched it grow. It was growing so fast that in the last month it was there the Doctor and I estimated it had doubled in size. And the only reason I had it removed seems trivial. I could see it in my peripheral vision when I was typing, and because it was new I found it distracting. So when it came up again, I was happy to suggest taking it out. Jesus. To think that something so utterly mundane may have made a difference in how quickly we've caught this. What if it hadn't been so close to the skin?

Those are the worst thoughts, and they're probably 5% of how I'm feeling. The rest of me knows that we probably caught it early, that scans will probably show no spread and that we really couldn't be luckier with lobbing on the doorstep of the surgeon we did. And our family is being terrific. Most of me is thinking one step at a time, and thinking positive. But of course, when you tell someone, you tend to tell them all the bits. My outlook is generally good. I have moments of sadness, and moments of anger. I can't be bothered with trivial things right now. I don't have the patience. And that's about all.

I am incredibly fortunate in this. I landed on the door of one the few surgeons who has seen and operated on this type of cancer, and he's able to refer me to the exact right people. The surgeon took it upon himself to discuss the Pathologists preliminary diagnosis and confirm that yes, we are looking at Cancer. Not knowing exactly which one because they are so rare does not, unfortunately mean it might not be. But I have every confidence that we are in the best possible hands. And that is six months time we'll be thinking back on this time and be out of it. That's the focus for now - one step at a time, and get this thing done.

5 comments:

Bron said...

Oh Keri, so that's what's been going on! BIG HUGS and all the good positive vibes I can telepathically send. xoxo

It's such a good thing you got it out when you did.

And a good warning to everyone else to never ignore any lumps, no matter how innocent you might think it is.

Stay strong, girl! Call me anytime, you know that, right?

Eb said...

That's bloody awful, I'm so sorry.

I hope you have caught it early and that you have a proper diagnosis soon. I'm sure the uncertainty and the not-knowing is shitty and stressful.

You've mentioned a couple of times in this post how lucky you are - and it certainly sounds like you are in good hands with your doctors. But I hope you don't feel the need to look on the bright-side of things. It's OK to be scared and pissed, especially getting such shit news so soon after the excitement of GETTING ENGAGED!!! Congratulations! That's wonderful.

Anyway, I don't know you from a bar of soap - I follow you on twitter cos I follow Jeremy - but I wish you all the best.

x

Keri said...

Thanks, Bron. That means a lot. And yes! If in doubt, get it out. I don't want to advocate for useless surgeries, but we were incredibly lucky I was fussy about it. Oh, and SUNSCREEN. This isn't a skin cancer, but it can't help to remind.

Thanks EB. I'm finding that I've got a strange mix of sunny-side up and doooooom going through my head. There really doesn't seem to be much in between. I AM incredibly lucky we ended up where we did, but considering this Cancer makes up 9% of 1%, also on the bad luck side of things chances wise. But thems the breaks. Onwards!

Miscellaneous-Mum said...

Oh, no, so sorry to hear this. How great to have such a vigilant, no-cutting-corners (it seems) doctor. Reminds us all not to be negligent of our bodies, or changes in them. Take care x

Kartar said...

Keri - chin up and stay strong. Thinking positive thoughts at you.

And don't let it overshadow the marvellous engagement joy!