Sunday, January 13, 2013

Time to turn up the radio

This post is going to be part bad news, part good news, part philosophical babble, part warts-and-all account of radiotherapy planning and some gig reviewing. Or something.

So let’s just get the bad news right out of the way, shall we?

So last week I found out I still had spots of lymphoma across my body. That was the initial blow. But the doctors were hoping that by weaning me off immunosuppressants, the graft would kick in and do its job.

But once again, this has been followed by another blow, and it’s a game-changer.

About four days ago I got a call from my Peter Mac/Royal Melbourne Hospital specialist nurse asking if I could call in and see her and one of the haematologists. I didn’t have an appointment booked that day and had only just been in the day centre the day before so this was unusual. She said she wanted to discuss a few things, like my cyclosporin dosage. I had a steady stream of visitors to the apartment that morning so I scheduled a meeting for the afternoon.

The day before at the day centre, I’d told the doctor about a sporadic dry cough I’d had for several days, and he'd sent me in for a chest X-ray. “They’re just being careful, I’m sure everything will be fine,” was my attitude. Wrong.

Turns out the cough, and the fact that I can’t do the two-minute walk from my apartment to Royal Melbourne Hospital without feeling short of breath, are symptomatic of something  bigger. The X-ray showed that the lump in my chest is getting bigger. I’m not sure about the medical ins and outs, but apparently it is wrapped around a nerve that is pulling on my diaphragm (which would explain the cough and shortness of breath).

But the unfortunate part of it all is that the tumour is increasing to a size that is too big for the graft to contend with. The graft v lymphoma effect is very efficient when there is very little cancer. But when it starts to become a mass, it becomes increasingly unlikely that the graft will work. Basically, they need to shrink the tumour in my chest, and they need to do it quickly.

So how will they do this? With one of the few untested weapons they have left: radiotherapy. When will it start? As soon as next week. Yep, as I mentioned: game-changer.

At the same time, they have taken me off the anti-rejection drug, cyclosporin, immediately. This will heighten the chances of me getting severe GVHD, but “that is a risk we have to take”, said the doctor. I am already showing some pretty minor, ambiguous sympGVHDtoms of GVHD (a rash, nausea, etc) right now, but it's hard to tell at this stage. (It’s a small consolation in the scheme of things, but I am actually really happy about shafting the cyclosporin because it has icky side effects, one of which being a package deal: a moustache and a pair of sideburns. If only lymphoma was as easy to remove as a moustache. Remind me never to complain about a lip wax again … sigh.)

So yeah, this is more shit news, but surprisingly I have just taken it in my stride. I didn’t cry when the doctors told me, I just sat there, stoic. It’s like I have built an armour around me and bad news barely even affects me anymore. And after all I have been through, I am simply not surprised. This is some kind of super-stubborn, bull-headed, cantankerous cancer (as some would say, a lot like its carrier, haha). I know it is a horrible thing to say, but it is like I am just waiting for that day the doctors take me into their office and tell me I’ve run out of options. Because I am, gradually, ticking each one off the list. It just feels like that is naturally where this is all progressing. I know ‘hope’ has been an important mantra for me but when you have been knocked down as many times as I have, it is very hard to keep doubt at bay. It sounds flippant, but I honestly believe I am prepared for all outcomes. I have been staring death in the face all year, and I don’t think it’s something you ever come to terms with, but you can quell some of the fear associated with it when you remind yourself that it happens to every single one of us.

If a genie in a bottle presented itself to me, there is only one thing, first and foremost that I would want for – that all cancer in the world be eliminated. Now I’m not sure how much power genies have, and if there are boundaries imposed on wishes, but if the rules allow, I would also add a ‘forever’ to the end of that wish.

Then I would wish for a packet of Tim Tams that never runs out. (Just kidding.)

So after that morbid ramble, I’ll but a positive spin on the situation like I always do to make things seem less shitty. What it comes down to is that I am actually lucky that I still do have options. The lymphoma has never been exposed to radiotherapy before, and this is a real positive as it has not had a chance to build a resistance, like it seems to have done with chemotherapy. And even though radiotherapy is going to be a pain in the arse, I am really glad that’s the treatment I’m getting and not further chemo. The radiotherapy, best-case scenario, might get rid of it, and if there is anything left over, hopefully the graft will complete the job. Yes, it would be nice if the transplant could’ve just finished the job and I didn’t have to go through this, but with radiotherapy added to the weapons catalogue, I also feel a sense of comfort, that not one, but two treatments will be used together to combat this persistent disease.

So, needless to say, after this briefing at RMH I was feeling a bit bummed. So what did I do? Hunted down a ticket to see one of my favourite bands, Beach House, who were playing a sold-out show at the Forum that night. Thanks to the power of the internetz, I tracked one down through Twitter and arranged to pick it up at the venue. Ironically, the girl that sold it to me had received mole biopsy results that day which confirmed she did not have a melanoma (I know this because it was on her Twitter feed). I'm not sure if that's ironic twist, or just an indicator that cancer and cancer awareness is so prevalent now that we all have a story. 

I went to Beach House alone, and I was happy to do it that way. I just knew I had to do something nice for myself, escape to my former life for a little while. This was my first gig since Golden Plains (in March last year! This is a long dry spell for a self-confessed band/festival junkie like myself), and it felt sooo good to pile into the Forum with all those Beach House fans after missing out on so much in the past year. I blended right in, except for the elephant in the room, the IV antibiotic pump I was connected to (for my CMV infection). It was hidden in my bag which of course got searched at entry, and when I opened the pack to show him the plastic IV bag of antibiotics, the bouncer was very compassionate, and showed me to some special corded-off seats at the centre of the venue so I could avoid the crowds. I thought this was a lovely gesture. 

But me being me, could only sit through the support act, then I just had to wade through the hipster cesspool just to get a closer listen and look at Victoria Legrand. I stayed up the front for the whole gig, and even though my legs hurt at the end, it was worth it. I even found myself weeping when they started playing, and fair enough, I’d had a full-on day but the people around me must’ve thought I was a melodramatic fool. But Beach House’s dreamy melodies move me for several reasons. The release of last year’s album Bloom, easily my favourite album of last year, coincided with my cancer relapse in May. I also received a vinyl copy of this album in the mail as a birthday present from a dear, dear friend, and I spent a lot of time listening to it and crying (I still have trouble holding back tears when I listen to it now). It was a melancholy comfort during a very dark period. Additionally, Beach House’s previous album Teen Dream was the soundtrack to my first, amazing summer in London. So it kind of didn’t surprise me that tears would spring to my eyes at moments during their set. I think you have to love music as much as I do to understand this. 

Beach House T-shirt for meeee
My lady crush Victoria Legrand, Beach House's lead singer
 Now, from music therapy to radiotherapy (how's that for a segue?).

I will be getting all my radiation treatment at Peter Mac. Back in May, I had been scheduled to receive radiation to my chest area following my autologous stem cell transplant, when it was assumed I was in remission, until a routine PET showed a hot spot in my chest. Radiotherapy was shelved in favour of a much more intensive and effective option – the allogeneic stem cell transplant, which, as we all know, is done and dusted now.
So today I found myself back in the radiotherapy planning room, talking to the same radiotherapy oncologist I saw last May, sitting right next to the mould of my upper body they’d also made back in May (which, thankfully, is still a perfect fit). I have the three dots on my body, tattooed in May, that allow them to align my body as it goes through the machine, and thankfully, no new dots are needed. Once again, as I did in May, I lay down, snuggled my body into the mould, while they fixed a very, very tight mask onto my face (it was all very horror-movie-esque, like Jason from Friday the 13th or Hannibal Lecter from Silence of the Lambs). It was so tight I could barely blink, and I could only (just) talk thanks to a small hole for my lips. Apparently, the tighter the better - if it isn't cutting off circulation, then it's good. Then I lay there, half naked while they poked and prodded, drew on me, taped me, took photos of me and got everything in the right place (this was a bit uncomfortable, but when you walk into a hospital, you leave your dignity at the door). Radiotherapy is just really weird, and I haven't even been introduced to the big monster machine yet.

The most striking photo of a radiation mask I could find on the internet.
If you want to know the story behind it, go here 
So the plan is that I will start radiotherapy next Wednesday (they weren't kidding about acting quick). I will have to go in for sessions five days a week. Overall, including preparation the sessions will take about 20 minutes, the actual radiation only several minutes. The side effects (sore throat, mild rash, tiredness) are minor compared to everything else I have been through. Radiotherapy will be more an inconvenience than anything. I will be juggling radiotherapy, check-ups at RMH, and the possible symptoms of GVHD in coming weeks and I don’t expect it to be a great time. Radiotherapy will not conclude until late February, about two weeks past the magical day 100, the day I thought I might be able to go home (although I'm not really sure where 'home' is anymore).

Another thing that I think about sometimes is the long-term effects all this treatment will have on my life. Stem cell transplant patients have a 2-3-fold chance of developing a secondary cancer - well I have had two of those, a bucketload of chemotherapy and now radiotherapy so I'm pretty sure my chances are now astronomical. But right now the focus is merely surviving. I'll worry about the other stuff later. 

Oh yeah, so now that I’ve depressed you all beyond belief, you want to hear the good news right? It’ll be a little anti-climactic now I’ve left it till last but it’s made an immediate improvement to my quality of life so it should certainly not be overlooked! I am now longer on IV antibiotics and I am now no longer surgically attached to my ‘style-cramper’ which was that little electronic pump I had to carry everywhere (and I mean everywhere. When I had a shower the pump would lie outside the glass door while I, still attached, would carry on with my personal hygiene routine). I’m so glad it’s gone, it gives me a lot more freedom and makes me feel just a little more normal. They switched me to oral antibiotics and I am very much enjoying this new lease on life, although the fact I get breathless after the smallest activity can be debilitating.

So for now I just have to put my head down and get through the next five weeks. Do I dare to dream that in five weeks the cancer will be gone? Do I dare to dream that, soon, maybe soon I'll start putting pieces of my life back together? Whenever I ask myself these questions, I take myself back to last year, when my doctors pretty much weren't expecting me to make it to the allo-transplant because I had a chemo-resistant tumour growing out of control, and I was pretty sure that was the beginning of the end. Well I'm still here, and many didn't expect me to be. The doctors said without a hint of doubt that a cure is still the goal, and that a cure is still possible. As long as there is a cure in sight, there is hope. 

Anyway in between all the crappy obligations that will be taking up my time, I would like to schedule in as much fun as humanly possible, so if you want to come over and play board games, watch movies, sit in the park, draw, laugh, learn a hobby, whatever ... you know where to find me :)


  1. I've been reading your blog since I saw it posted on Sam's Facebook page a few months ago. (I met him briefly at a friends 32nd Birthday party last year and we platonically shared a bed lol.) I've been reading and just hoping and hoping that you keep getting good news and that this will all just go away for you. You have beaten it so far, and I am pretty sure that your body isn't going to give up on you yet. Good Luck with it all, and heres to more good news rather than bad :)

  2. Hey Beth, I will be always waiting for the day when you will hold your will... the magic sword and command upon all the power in the universe to put an end to this war. Wishes... Prayers and Power to your will...

  3. Hey Beth, I will be continually sitting tight for the day when you will hold your will... the enchanting sword and order upon all the force in the universe to put a finish to this war. Wishes... Supplications to God and Power to your will... top crowdfunding sites