Friday, March 22, 2013

Words escape me.

It's been a tough week. As some of you would know, I had a PET scan last Thursday. I didn't get a call from my doctor about the results until 6.30pm the following Friday. In the meantime, I was tied up in knots; I felt an anxiety even greater than I had ever experienced for any of my previous PET scans (all 12 of them). With good reason, it turns out. 

I knew on Friday that my results weren't good. But I didn't get to discuss this in more detail with my doctor until the following Monday. This consultation was difficult. It was the first time, in my whole 17-month journey, that I was told the doctors did not believe that any treatment options for me were going to be curative. 

At the moment my only hope (and I’m talking the smallest sliver of hope here) is a clinical trial possibly followed up by some radiotherapy. But my doctor doesn’t even sound confident about that, and he said he doesn’t want to instil me with any false hope about what I am facing here. And that’s not at danger of happening, I think that tank is running pretty low now.

In a nutshell: the good news (yes, there is some good news, hidden among this steaming, shitty pile of bad news) is that the radiotherapy worked. I have no lymphoma in my chest. No lymphoma in my arm. And the doctor says it probably won’t come back.

The bad news (and this is MAJORLY bad news) is that while I was busy getting radiotherapy in my chest, the cancer was growing elsewhere, and it wasn't holding back. As a result I have about five or six tumours across my abdomen, and a couple of them are very big, and very active, and pressing against some very important organs. One is spread below my breastbone, just outside the radiation field in my chest. One is pressing against my bowel. Then there are others dotted across my lower body. The lymphoma is still alive and kicking, unfortunately. The sub-editor in me wants to name this "Lympossible", because as my doctor has said, this cancer is proving impossible to eradicate. 

So the options are running thin. Radiotherapy at the moment is not an option. The tumours are too big, and the areas too sensitive for them to use “eradicative” radiotherapy (radiotherapy strong enough to completely get rid of the tumours). Boosting my new immune system with Interferon is also not going to work. Once again the tumours are too big, and they’re not confident my immune system wants to do anything anyway, it just isn’t showing any signs of fighting. Standard chemotherapy isn’t a good option either – the doc says this could make me very unwell, land me into hospital for an extended period of time and it might not do any good. He doesn’t deem that a good use of my time, when I am basically feeling well right now. 

So my doctor has recommended that I go on a clinical trial. There is a trial I am eligible for, but my platelets must be at an appropriate level before I can proceed. Last week my platelets were low but increasing, and on Monday I will get another test to confirm whether they have reached a suitable level. I will probably also need a biopsy (a simple day procedure) and perhaps a few other logistical things will need to be sorted out. At the moment I know very little about what the trial will involve. I have no idea how intensive it will be. I don't know if it will work and I am certainly not relying on it, because this is no tame lymphoma we are dealing with, this is a monster. To absolutely wipe out every single tiny little cancer cell is going to prove a monumental task and I don't know if it's going to happen. 

So, psychologically, where am I at? I’m upset, obviously. It is not easy being told at 30 years old that I have a cancer that is basically impossible to treat. That I am basically at the end of the line here. But you've got to remember that I have been facing this for a long time now. Last year I was in a very similar situation, where my doctors did not believe I would even make it to my second stem cell transplant. I made it, against the odds, but now a bit less than a year later, I find myself back in the same situation, facing the full brunt of my mortality once again. I don't know how many get-out-of-jail cards I have, but I do keep in mind that anything is possible. I have thought about death, I have thought about this crazy cycle of life, the ways of the universe and what little control we have over this ... once upon a time the thought of being told by an oncologist that there is "nothing more we can do" was incomprehensible, but now I am in that situation and sometimes it feels surreal. But at the end of the day I'm not that surprised, just sad.

I have remained optimistic all the way throughout my journey, but I am also a realist. I've seen the scans, I've talked to doctors, I've been reached the darkest depths and most resounding highs throughout my journey and I have no delusions about what I am facing here. The journey ahead of me now feels comparable to crawling into a boxing ring to face Mike Tyson or Anthony Mundine, fists raised, with absolutely no boxing experience behind me whatsoever. If something works out for me from now on, then lucky me. But I also think it is important for me to accept that there is a strong probability that things won't work out.

However, please do not think I’m going to turn into some depressed, sad, shell of a person over this. Over the past week I have felt I have had some "grieving" time to deal with the fact that my life could be over at 30. But I will be throwing everything into taking my mind off dying, and into living. I still have many things I want to achieve this year and I will be doing them. This morning I had a meeting at The Cancer Council to discuss working there as a volunteer media assistant two to three days a week. At the moment I feel like I need a distraction and a routine; something to occupy to mind as I go through this difficult period and it's something I really want to do. Last week I went into Royal Melbourne and spent some more time in the recording studio, to work some more on my song that might be featuring in a CD compilation. I have dreams of going to America this year and whatever happens, I will make it there. I have also been looking into other therapies, here and overseas, which I will be discussing with my doctors when I get a chance. I remain open-minded, within reason of course.

Me and the sound engineer in Royal Melbourne's recording studio
And let's not forget the wonderful things that have happened over the last few weeks – an amazing family reunion to celebrate 60 years in Australia (you’ve probably heard it here before, I have the most amazing family in the world) last weekend, a trip to a friend's leafy retreat in the Dandenongs where I enjoyed awesome company and some dancing in my underwear, a free gig to go see Peter Murray (who I also got to meet backstage), provided by the wonderful RMH music therapist Emma O’Brien and early next week I am going to feature in the Q&A audience which will be filmed out at Werribee - yes I am a complete political nerd and this excites me immensely (look out for me on ABC1, Monday night, 9.30pm). 

Me and my cousins (just a small sample)
Oh hai Pete Murray
So for now I am killing time until I get approval to go ahead with the trial. They have put me back on a hefty dose of steroids in a bid to keep the tumours in check. So I am once again just trucking on in the only way I know how. Fortunately for me the cancer is not causing any real symptoms at the moment and I am feeling as well as I have been. I guess that's what also makes it hard to swallow: I feel and look well, better than I have in a long time, how can it be true that I am facing the real possibility of a death sentence? All I can keep focusing on is that I do feel well and will continue to make the most of that fact.

Thursday, March 7, 2013

So, on a more positive note ...

I started writing an update about my current situation, and then when I read it back, it just came across as really boring. Because really, not that much has been happening in the past few weeks. I have been undergoing treatment, but I have no idea how successful that has been until I get my scan next week. At the moment it is just another waiting game. So I thought, to make this post a little more exciting, I would share something that I have been a little bit shy about putting on here, but a lot of people have been asking me about it so I think it's time.

During my allogeneic stem cell transplant in November I had the pleasure of meeting Royal Melbourne Hospital's music therapist Emma O'Brien. In a welcome disruption to my days of isolation on the ward, Emma would burst into my room brandishing her Cole Clarke guitar and an iPad packed full of song chords, and we would happily whittle away thirty to forty minutes singing classics from some of my favourite artists like Fleetwood Mac and The Cure.

The idea came about to combine our skills and write a song, so during my admission I put pen to paper and scribbled down some poetry that captured some of the loneliness and underlying hope that filled my days on the ward. I didn't see Emma again until following my discharge, but when I turned up to her studio (yes, after much campaigning and fundraising, Emma has her very own recording studio at RMH) I had a handful of notes ready to be put to music. After playing a few chords, shuffling around the verses, adding a line here and there, Emma and I had a song.

You can read the lyrics here:

Time in the sun

Like every drip of saline, the days slowly trickle by
Outside my misty window, the city gently sighs
I'm climbing the four walls of this glass cocoon
Somebody please tell me I'll be out of here soon

The city skyline is spattered with rain

I can't wait to feel the sun again
On my face again

We could turn this glass oasis into a holiday for two

Where there's sun and laughter, and plenty of things to do
I've got to get my head from now to then
I will have my time in the sun again
In the sun again

Every day, as I'm bound to this pole

A bit of sunshine drips into my soul
Drips into my soul

Panadol for pina colada

Skyscrapers for the sea
IV for a sun umbrella
This is where I long to be

Panadol for pina colada

Skyscrapers for the sea
Ocean through a stethoscope
This gives hope to me

So, I'll cap this off with a condensed update:

Radiotherapy is over. There are not many 30-year-old Melburnians who can claim to have a "radiation tan" but I certainly have one. (Forget the solarium, try a radiation machine! And it actually gets rid of cancer, instead of causing it!) And it's in a kind of heart shape, on both my chest and back. Apart from an icky armpit rash, a few flat days and a dull sore throat on some mornings, radiotherapy was ultimately a walk in the park compared to everything else I've been through. But after five weeks of appointments five days a week, you can imagine how relieved I am to tick that treatment off the list. 

But as is typical with my journey, one chapter closes, and another begins. As radiotherapy drew to a close, I began my injections of the drug Interferon. Interferon is a pretty commonly used drug that can be used to treat things like Hep C and MS. For me, the aim is to activate my immune system (or Megan's, should I say) so that it can fight the lymphoma. The plan is to keep upping the dose until I get graft vs host disease (GVHD). The Interferon comes in the form of a pen, similar to the Epi-pen used for allergic reactions. I have to inject myself, to the stomach, three times a week. This hasn't really been a problem - just last year I had to give myself twice-daily injections of Clexane for three months, and the needles for that were far bigger. 

With my next PET scan looming (No. 13, dun dun dun) I would be lying if I said I am not starting to feel some pre-scan anxiety creeping in. Last night in bed, I had a sudden case of the sweats: What if the PET scan isn't clear? What if I run out of options? What if? But I have been here a million times before and I am pretty skilled at pushing these thoughts in the darkest depths of my mind. As they say, "Ignorance is bliss". I don't want to spend my days wracked with stress and anxiety, so I am just focusing on the best thing I can focus on: that right now, I feel good. 

I have hair! Though admittedly not as much as my two-year-old cousin Hakeem
I am hoping more than anything that next week's scan comes back clear. But my ultimate goal goes a step further than that: I'm aiming for TWO clear PET scans in a row, something that has never happened for me. Once I reach that goal of two in a row I will be booking a trip to the US. What better place to celebrate being healthy again than New York City?

If my PET is all good, I will be leaving my North Melbourne apartment, which makes me a little sad because I absolutely love this city and this area, but I am also looking forward to moving onto the next phase. I will have to head back to Gippsland to regroup and work out the next step but I am pretty sure I will end up back in Melbourne. As per usual I am not planning too far ahead. I've been here before; thinking I was on the home stretch and about to get on with my life, only for things to come crashing down. Instead of returning to the comforts of “normal life” I faced more treatments, more anguish, more uncertainty. Now, I feel reasonably optimistic but it’s so hard to let myself even dare to dream that I might be anywhere near the finish line. But that’s what I do, it doesn’t matter how many times life kicks me in the guts, I still look forward with blind, naive optimism. And even though life has been pretty nasty to me lately, I still really do love it. I have to.