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 13^th 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 :)

When the world tells you to give up ... hope whispers, 'Try one more time'

If there were ever an argument against planning, this would be it.  A couple of weeks ago, I figured because I had a bit of time off scheduled before my allograft, that I would book a trip for Matt (visiting from London) and I to Cairns. We would swap the dreary Melbourne chill for tropical weather, sandy white beaches, resorts with swim-up bars, a glass-walled treehouse amongst the Daintree Rainforest and a jaunt to the Great Barrier Reef. It was going to be amazing, and I was looking forward to it more than anything in the world.

Until my PET scan results came back.

When I walked into the haematologist’s office five days ago, roughly two hours after my PET had been completed, he told me straight up: “Your PET: it’s not good.” My heart sunk. He went on to explain that there had been “substantial growth” of the cancer spot that had showed up six weeks ago on my scan - substantial enough to warrant a major change in plans. In six weeks, the lymphoma cells had decided to go crazy and go on a free-for-all spree across my body and as a result I have a growth in my chest, several deposits in my abdomen and another in my arm. This was not what I, or the doctors expected, and all I could do is stare at that scan, breaking out in a cold sweat, wondering, why, just why won’t this thing go away and let me get on with my life?

For an allograft to be effective, there has to be minimal cancer present. If there is too much lymphoma, it simply won’t work. Unfortunately my lymphoma had reached the limit of “too much”. So the doctor told me we would be switching to Plan B … or is it Plan C, D, E or Z? I’ve lost track now.

Which is why I now find myself back in Ward 2 at Peter Mac, hooked up to a drip, while I get more chemotherapy in a bid to shrink my cancer down to a manageable size so we can still go ahead with the allograft. Instead of diving into the deep blue seas of North Queensland, I leapt straight back into that murky teal green colour of a hospital bed.

The chemotherapy is called Hyper-CVAD. I had two rounds of this chemo before my auto stem cell transplant – it was pretty nasty stuff that made my eyelashes and eyebrows fall out but it also put me into remission. It’s really the only thing that’s shown any considerable clout in the fight against my lymphoma, so I’m hoping it’s still at its fighting best this time around. I need it to be.

In early August, I will get another PET. If the cancer is small enough, we will go ahead as planned with the allograft on August 27. If the cancer isn’t, I will undergo another round of Hyper-CVAD, then go into the transplant.

Neither situation is ideal, as it places me at high risk of toxicity. The toxicity levels in my body could lead to deadly implications during the allograft. Having the aurograft and allograft in such close proximity was always a danger, but throwing the extra chemotherapy into the mix has shaken things up a notch. In a word, I am terrified.

The doctors have made it very clear they are still working towards a cure, and I am still as hopeful as ever. I have dreams of reaching the end of this nightmare, my body, broken and battered, shaky on its feet, but filled with pure elation because I went to hell and back and made it. But I also have to be realistic. There is a very real chance that I could lose this race. And if it wasn’t my life in the balance then let’s face it, I would have given up ages ago.

So needless to say, I had to cancel that trip to Cairns. Kindly, the accommodation providers I booked with in Cairns gave me a full refund with no charge when they heard my story, but I guess it must’ve been hard for Colin from Beach Hideaway Cabins (complete with friendly ocker Queensland accent) to take the $170 from me after I’d just blubbered into the phone that I wouldn’t be making it because I had chemotherapy. Unfortunately the people at Tiger Airways haven’t managed to show me the same compassion yet though, it’s a sad world we live in sometimes.

Anyway, if anything, this experience has given me a chance to be reunited with some old friends. The PICC line is back in my arm, I’ve been peeing in a pan for days, Big Bertha (my IV drip monitor) is by my side again, a big bag of chemotherapy is slung high on the drip, inside its ominous-looking sun-protecting black bag and of course, there's the wonderful nurses here at Peter Mac who all know me by name (either looking at me as if my puppy just died or wisecracking, “I thought I told you we didn’t want to see you here again.”) I’ve also welcomed an unrelenting river of loud, wonderful, colourful visitors (some of them drunk, admittedly) to Peter Mac and the gloves, gown and orange ‘duckbill’ mask guests must don before they come into my ward (due to a flu outbreak) have provided many laughs and magical photo moments (see below).

The 'speck-duckular' respiratory masks at Peter Mac as modelled by the lovely Jacqui. 

I’m sorry that people have to read this; I really wish I had some good news to bring for once, I really do. But you hear of people defying the odds all the time, and maybe I’ll make it to the successful list - it’s not over yet. A man in ward 2 the other day told me “You’ll beat it,” with such certainty I almost whole-heartedly believed him. I’m 30 years old, I have (supposedly) one of the most treatable cancers that exist and my body is not going to go down without a fight. And as much as it hurts me to see my situation tear up those people that I love, I am also constantly reminded of how lucky I am to have them here in the first place. There is still fun to be had, my friends, and there is still hope. 

Insert every expletive you can think of here

I should be used to curveballs by now. God knows I’ve had my share. That adage: ‘you never know what’s around the corner’ – well that couldn’t ring more true for me right now. But what really took me by surprise was the fact that this time a big Mack truck was screaming around my corner. It has knocked the wind out of me but it hasn’t defeated me, yet.

So, backtrack to about a week ago. Things were going pretty well for me, all things considered. I was several weeks out of my stem cell transplant and I was feeling pretty good – getting stronger by the day and able to keep up with most people. I would tire quickly and clearly my strength wasn’t what it used to be, but life was about to get back on track. I wouldn’t be running any marathons but I was doing alright. I had achieved ‘complete remission’ judging on my last PET scan and I was almost celebrating. The doctors had congratulated me and it was hoped that we would never see my lymphoma ever again. I knew I wasn’t out of the woods yet, but I was as close as I had ever been.

The ‘only’ hurdle I had left was radiotherapy – which would involve four weeks of coming into Peter Mac every day, to be passed through a machine for 20 minutes. The premise was that it would eliminate any cancer cells that were left, if there were any left. I wasn’t too worried about this, as the doctors and nurses had assured me that it wasn’t going to be anywhere near as bad as anything I had already been through. It came with its own long-term risks, such as increased chance of heart disease and breast cancer, but I was willing to take those if it decreased the chances of the lymphoma coming back. Radiotherapy was going to be an inconvenience, more than anything.

Before I got radiotherapy, as per procedure, I had to undergo a range of tests, such as a lung function test, ECHO (heart scan) and a PET scan – all things I underwent before my stem cell transplant. These tests were considered a formality more than anything, and they didn’t harbour much thought from me. Compared to the anxiety and fear that plagued me before my previous PET scans, I was substantially more relaxed going into no.4.

So when the radiotherapy oncologist took me into his office and told me that a small spot had showed up on my PET scan, I was dumbfounded. It was not at all what I could have expected. When I looked at the scan on his computer screen, there it was, clear as day, a 13mm spot in my chest, right where the original tumour had been. The experts had deliberated over this spot for about a week and were pretty much certain it was cancer. The chances of it being anything else were incredibly slim. As a result I won’t be getting a biopsy to find out for sure – the procedure itself is simply too dangerous and will probably only confirm what the doctors really already, in their hearts, know. I trust these men who have 20-plus years in the medical industry working with cancers when they say it’s a relapse. I wish I didn’t have to believe it, because the news is the hardest I’ve ever had to bear, but I have to.

It has been a bitter pill to swallow. I am only about 7 weeks out of my stem cell transplant and the cancer has come back. I have been through every myriad of feelings – anger, disbelief, sadness, despair, but most of all I just feel defeated. I have done everything I can, I have put my body through things it should never have had to go through, and I am back at square one again – in fact, a much scarier and dangerous square one. It feels like a kick in the guts. I spent days crying about this, but at the end of the day, like this whole journey, I can’t control what happens. So what can I do? All I can do is live each day like it’s my last. Literally.

To see how distraught my nursing co-ordinator and my oncologist were about this scan really brought home what a serious situation I am in. This has shocked and disappointed even them, and they’ve have seen everything. But basically, my oncologist sat me down and gave me three options.

Option 1 – Do nothing. Say goodbye to Peter Mac, doctors, needles, tests, hospitals – walk out the door and go and enjoy my freedom and live life. I’d have a pretty normal quality of life for a good six months until my lymphoma would be large enough to show any symptoms. Eventually, it would take my life, maybe after another six months, it’s hard to say.

Option 2- Get radiotherapy, to the chest area and upper abdomen, as originally planned, but a higher dose to the area where the lymphoma had grown back. However, the chances of this therapy being curative were 10%.

Option 3 – An allograft – a second stem cell transplant, this time using my sister’s stem cells (who tested as a match for me several months ago), instead of my own. This procedure comes with its own risks. There’s about a 20-40% chance I could die from complications from the procedure. But there’s a 1 in 3 chance that this procedure could cure the cancer. Unlike my first stem cell transplant (called an autograft), where the chemo was expected to do all the work, in this procedure, the hope for a cure rests on the stem cells themselves, which are hoped to fight the lymphoma. The downside is that the stem cells also fight a lot of my good cells, which leaves me at danger of graft vs host disease, which can be deadly.

As I said to my doctor on the day, all three options are “pretty crappy”. But option 3 is really all I’ve got left. I’ve seriously had enough of hospitals, and I’ve had enough of feeling sick, but I can’t give up yet. Maybe if I was 80 years old and had lived my life, I would consider option 1, but while there is still a chance, no matter how slim, that we can cure this, I have to take it. The odds are stacked against me more than they have ever been, but in a way I am lucky I still have any options left.

 There has been some discussion about me getting radiotherapy before the allograft. The danger of this would be that the radiation could do damage to my organs such as my heart and lung, and if it did, I might not be able to go through with an allograft if the cancer returns. However, if I go through the allograft first, I can still get radiotherapy if some cancer remains. It’s a tough call - do I take the reasonably painless, less effective procedure over the much, much riskier, more effective procedure at risk of losing my one window for the biggest chance of a cure I’ve got? The doctors have told me they’d be surprised if the radiotherapy was curative, but it would shrink the cancer and buy me time before the allograft.

Nothing is really going to happen for the next few weeks. I will get another PET scan in four weeks to determine what the spots are doing, and if the doctors need to act fast, or if they can buy more time while my body gets stronger. The longer my body has to get strong, the less risky the allograft will be. However, the more cancer there is, the less effective the allograft becomes. So it is just another excruciating waiting game. For now, all I can do is set about doing all those things I want to do with my time, like fly to WA, for example. I’ve never been there before, and I have a wonderful cousin to visit over there, so the time could never be more right. Last weekend I flew to NSW, and enjoyed a weekend in the Hunter Valley with some of my oldest friends - it was the best thing I could have done.  I don’t want to waste time worrying about things that are out of my control - although I wouldn’t be human if it didn’t affect me somewhat. My favourite saying at the moment is “I could be dead tomorrow” - which is really true for all of us. I’m going to laugh, love, share, travel, spend and just enjoy those simple pleasures that we always take for granted.  Spending quality time with quality people is what it’s all about right now.