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. 

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 :)

Hope: still present; Patience: wearing thin.

I've never been a fan of the new year's period. The pressure to do something amazing on what is really just another night, indecisive friends, resolutions that are rarely fulfilled, inflated prices, crowds, drunk people ... blah, who cares. Let's just start the new year already. And then when things finally tick over to the next year and it's supposed to be a new beginning, etc, everything just feels the same, except you're nursing a mammoth hangover. 

2013 so far hasn't been anything to rave about. But I still have hope it will get better.

Despite this, I really enjoyed my new year celebrations at the Grampians at my cousin Laura’s house. It was chilled, low-key and enjoyed with quality company among the beautiful mountainous surrounds of western Victoria. It was everything I wanted from a NYE. After a super tough year of treatment which had me essentially tied to Melbourne, I really just wanted to get out of the city, and I’m so glad I did.

Hollow Mountain, you got nothing on me.

While I was on top of Hollow Mountain, my phone rang. It was a call from the PET centre to confirm my appointment on January 2. Just another reminder that you can never 'fully escape' from being a cancer patient

Watching the sunset on new year's eve

Because January 2 was a plunge straight back into the cold, harsh waters of reality. Back to Peter Mac, my old home, which was depressingly empty due to the holidays, and back through the PET scanner. (I’d lost count at this point how many scans I was up to but mum informed me it was my 11^th.)

I emailed my doctor to let him know the scan was done, and he was going to call me with the results. When I hadn’t received a call from him by the following afternoon, I was fearing the worst. I have been through enough PET scans to know that if it’s good news, they usually try to tell me about it as soon as possible. I felt that on the morning of January 3 I already knew what was coming.

So when I met up with my transplant doctor at about 2.30 that afternoon, he was forthcoming with the scan results. “Some lymphoma has shown up on your scan,” he said straight off the bat. “Let’s get that out of the way first.” Deep breath. It was what I expected, but still not what I wanted to hear.

However, this does not mean the transplant has failed. Since the transplant, I have been on all sorts of medications to suppress my immune system, to prevent the onset of graft vs host disease (namely two - Prednisolone, a steroid, and cyclosporin, an anti-rejection drug). This also means that my new immune system has not been given a chance to fully kick in, to fight the lymphoma as we hope it will. They are hoping that as they wean me off these medications, my immune system will jump in and attack. “It’s time to unleash the tigers,” the doctor said. Of course there are no guarantees this will happen, but everything is set up for that to happen. So once again, like everything, it is another waiting game to see if my immune system has what it takes.

The good news is that the lymphoma’s growth is not anywhere near as significant as it has been before, with a few spots across my chest, a spot on my arm and a faint, possible one in my pelvis. Considering that I have not had chemotherapy since late October (and low-dose chemotherapy at that), this would suggest that maybe the transplant has had some effect, and slowed the lymphoma. It's hard to know at this point. 

As a result, I have stopped taking the steroids and my cyclosporin dose will be gradually reduced over three weeks. Both these medications suppress my immune system and prevent GVHD, so I will have to be watching closely for GVHD symptoms in coming weeks. But I find myself wanting GVHD because if the graft is attacking my body’s good cells, that generally means it is fighting the cancer too. But GVHD, in the serious stages, can be dangerous and even life-threatening, which is why it's important to keep an eye on it. You often hear the line from doctors that you want a "little bit" of GVHD but not a lot, because it shows the graft is doing what it's supposed to. 
  

I’m pretty used to this kind of news, but I’m tired. I just wish this lymphoma would get the picture and realize I don't want it around anymore. 

In other related news, I’ve also been made aware that I have a CMV infection. CMV (cytomegalovirus) is a virus that 50% of people have. In healthy people, it remains “latent” – that is it stays in your body, but your immune system keeps it dormant. When someone is immuno-suppressed (like I am), CMV can be reactivated and there is a danger it can cause serious infection. My latest blood tests show that my CMV levels are increasing, so to get it under wraps quickly, I need IV antibiotics for at least the next two weeks.

Thankfully I do not need to be admitted to hospital for this; I receive these infusions in my apartment via Hospital in the Home. Nurses visit me once a day to oversee my morning infusion, and then program my nightly dose into a pump I have attached to me at all times. Which is the downside. I have to carry this thing around with me and the HITH rules stipulate that I can’t leave the apartment. Of course this happens right when I have important social events to attend, like a hen’s night and a wedding. It's actually been too hot to spend too much time outside anyway, and I pray that it will only take two weeks but it could take longer. Hopefully though as I am weaned off the immunosuppression my immune system will be once again able to keep the CMV under control.

My new friend "Happy" (named after one of the seven dwarves) who never leaves my side
 and gives me antibiotics twice a day

So yeah a bit of a crummy start to the year all up, but as my doctor has reminded me, allogeneic stem cell transplants are “a process” and I will cross the bridges I have to cross when I get to them. I guess it just annoys me because once again, everything is clouded in uncertainty. Cancer has become so entrenched in my psyche that being lymphoma-free just feels like an elusive dream at the moment. 

The positives are that I am feeling OK, the cancer is nowhere near as widespread or menacing as it was and the doctors are still quite positive, so then so am I. One of the doctors from the transplant team told me while the presence of the cancer wasn’t ideal it was “acceptable”, and the head of the team said he wasn’t happy the cancer was there, but he wasn’t surprised either. He said they had really only completed 10% of what the transplant set out to do. So hope certainly is not lost. 

Really there is nothing else to do but carry on like I have been, and that's what I'm going to do.

I can see clearly now ...

Good evening, Day #31. Weeks ago the days were slowly trickling by, and Day 100 felt so far, far away. Now I am already a third of the way, and “kicking goals” to quote my doctor. If I wasn’t swallowing 20 pills a day, wearing wigs and scarves to cover my bald head and spending enough time in Royal Melbourne Hospital to know many people by name now, it would just feel like a regular summer. Health-wise I’m as strong as I can be – my organs are all functioning normally, I have no debilitating symptoms and even my energy levels are pretty good – I am far from housebound and enjoying the many things that North Melbourne and surrounding areas have to offer.

I am still required to visit the Royal Melbourne day centre three times a week for check-ups. Among the familiar faces are a diverse range of haematology cancer patients; some young but most of them old; many of them are post-transplant patients like me; some smiling, some sad; some with chemotherapy feeding into their veins, some with fluids, some falling asleep in their chairs; most with companions like partners or mothers. I am well-acquainted with day centres, having frequented them at London, Latrobe Valley, Peter Mac and now RMH for my various treatments. Sometimes they would be depressing places – you are often surrounded by some very sick people - and I would get this mild anxiety about having to sit in “the chair (morbidly, in my head I would associate it with an electric chair). Even though it is a place of healing, you are also having poisons injected into your body.

I have to say the RMH day centre is different though; it’s not such a bad place to be. I go there enough that everyone is familiar, and the staff are so upbeat; smiles and jokes abound. Quite often it’s a fleeting visit: the nurse performs the general observations, runs off a copy of my blood counts, then I have a brief chat with the doctor about anything that might be bothering me and I go on my merry way. Sometimes I have stay a couple of hours for an intravenous top-up of magnesium (the anti-rejection drug cyclosporin chews up my magnesium levels) or fluids. Soon though, these visits will be cut to twice a week which is a good sign. Next week I also get to lower my daily steroid dose which I am looking forward to because it’s hard to get a good night’s sleep on 35mg of Prednisolone a day. The steroids keep graft versus host disease in check (which I have had no symptoms of as yet) so it will be interesting to see what happens there.

It will still be some time until I find out whether the whole point of the transplant has been achieved and whether my new immune system, “the graft” has attacked the lymphoma cells. Building a new immune system is no small task and at the moment it’s barely clicked into first gear. It won’t be firing on all cylinders until another six months, and until then I still have to be careful in terms of infections (I can actually get measles, mumps and all that nasty stuff that most people are immunised against). I have a "baby immune system" as one nurse described it. My next PET scan will be around Day #60, some time after Christmas. Again this is too early to tell whether the graft vs lymphoma effect has taken place, it will simply be a surveillance exercise. All I can do for now is celebrate that I am feeling well and enjoy the glorious Melbourne summer and festive season that is unravelling around me.

Queen Victoria Night Markets ... I love Melbourne in summer

And I can’t believe how at peace I feel. 2012 has by no means been an easy year which has taken to me some of the darkest places of my life. But right now I feel I have come so far and grown into the person that I want to be. I just have to wait for my body to catch up and heal to complete the picture. It's been a year since I returned from London and I still find myself in limbo; unable to get back to work, get back on my feet and regain my independence and that has been very frustrating. Reconnecting with friends after 18 months abroad and with an illness has been a challenge as well. But at the same time I have had plenty of time to reflect, think about the things that are important to me and what this thing called life is all about, and I feel like I’m in a good place right now, moreso than a lot of physically healthy people.

I feel there are so many positive things happening lately too. While in North Melbourne I have been able to visit fellow Traralgonites Chrissie and Wes and their three-year-old son Aston who has undergone a bone marrow transplant at the Royal Children’s Hospital. It has been a long, tough nine-month journey for Aston who amazingly recovered from stage 4 GVHD and a stint in intensive care, and now he finally gets to go home to Traralgon for good. Seeing Aston doing so well and the way his parents rally around him has been a major boost for me. Around the same time, dear friends of mine in Merimbula have reached a milestone: their two-year-old daughter Pearl is now four years on from her leukaemia diagnosis, has had two years chemo-free and is strong and well. Jimmy Stynes said in his book, “Those looking for perspective will find it in bucketloads when spending time with kids with cancer.” Their resilience in the face of everything they’ve been through is just inspiring and life-affirming. It also shows that even when things seem bleak and neverending, there is always hope.

Today was also a great day because I did something I’ve never done before: I wrote a song. At RMH there is a wonderful music therapist called Emma O’Brien who visited me while I was on the ward for some guitar playing and singing. While I was “inside” I put some poetry together, and today I visited her at the recording studio (yes RMH has a recording studio!), we added some chords to it and we’re planning on doing an initial recording next week. It’s a great song and I’m excited about it. Rock stardom here I come!

Emma O'Brien featured in the November 30 edition of The Age's Melbourne Magazine

Now a funny story to cap things off. Last weekend I went out for dinner in Port Melbourne with my brother and some friends. While I was sitting staring out the window at the beach views, I noticed that my vision was crystal clear. I’m mildly short-sighted and need the help of contacts or glasses to see for long distances. But wait, what was this? I could see ships clear as day on the hazy horizon, and I could read the specials board from the other side of the room. Had my vision magically corrected itself? Had Megan’s stem cell superpowers given me perfect vision? I was baffled by this until I got home and upon inspection of both my eyes, I realized that I was still wearing my daily contact lenses that I had forgotten to take out the night before, when I had flopped into bed exhausted. These lenses had withstood a night’s sleep and a shower, and once they were finally removed, alas, I was blind as before. Classic blonde moment (no I can’t blame it on “chemo brain”, I was always like this). Ah well, I still hang on to the hope that Megan’s stem cells will pass on some kind of superpower, her mad guitar skillz maybe? Her unbeatable Just Dance moves?

So that’s November. A month in which I reached a year since my diagnosis, a month in which I recovered from my second stem cell transplant in a year, a month in which I wrote my musical opus, a month in which the sun shone on Melbourne and reminded me why it is still one of my favourite cities on earth. It’s all good folks, it’s all good. 

Freedom and fist pumps

Being able to relax on my North Melbourne balcony in the sunshine and gentle breeze, watching the world go by. Relaxing on the couch watching TV with the fam. Enjoying a home-cooked meal around the table. These are all the things I promise I will not take for granted anymore.

If the purpose of me going through this whole cancer ordeal is to appreciate those small things, then I can say that mission is accomplished. I will never take good health for granted again, and frankly, I am just happy to be alive. (Just to reiterate, I don’t really think there is a ‘purpose’ for this ordeal. I think it just happened because one of my cells happened to mutate and multiply. To me, it’s as simple and unfortunate as that.)

I was in hospital, all up, for about 19 days. I was barely allowed to leave my little glass cocoon, which was room 8 on the 5^th floor (though, that said I did have the nicest view and biggest room on the ward – the ‘penthouse suite’ according to the nurses). For most of this time, I was sitting there just waiting fort my neutrophils, which had been sitting firmly at zero for days and days, to increase so I could get out of there. In the meantime I wanted to avoid any nasty bug that might come my way.  There were a couple of days that I was pacing the room so furiously that mum was going to ask the doctor to prescribe me valium. I probably did need it too. It’s quite unusual for me to get anxiety but there were a few days that I felt it heavy on my heart. There were also a couple of mornings where I found myself crying into my porridge (which would add some flavour at least) for no fixed reason. I wasn’t worried about the transplant not working, I was more worried about the days ahead, and how I was going to manage them with even a shred of sanity. I was burdened by the monumental task ahead of me.

So what did I do with my time? I read, though my concentration would fluctuate from day to day. I watched shows like 30 Rock and movies like Clueless. I wrote poetry. I kept a diary. I played on my mum’s iPad. I played SongPop on my iPhone. I tried to keep up with the news, but as with my concentration, my interest in current affairs would wane some days. I spoke to people. And this is where my star visitors come into play – as well as brightening my day they also helped to break it up, as did the letters and notes of support (as if in some kind of poetic harmony, I ran out of letters to read right before my discharge from hospital).

Sunset from my window

I was one of the lucky ones as I didn’t suffer much sickness throughout my stay. A really ugly infection broke out on my face, kinda like an infected pimple, but it didn’t cause me much grief apart from making me look monstrous. From Day +8 to discharge I had a sore throat, but I still managed to eat all the way through and thankfully I never had to be fed nutrition through a drip. I had some loss of appetite and drowsiness, but the flatness, lack of fresh air and boredom were worse. I can’t even say the first few weeks of my allograft were much worse than my autograft. It was simply that the process was longer, and different.

Other things that helped were regular walks up and down the ward (which is about 50 metres long, no kidding) and getting decent sleep every night, which surprisingly I managed. Most of the time I sleep like a baby in hospital. Despite being roused from sleep about five times a night for observations, medications and blood tests, I always fall straight back to sleep and doze until the doctors usually do their rounds at 8-8.30.

Day +12, a Saturday and Stakes Day in Melbourne, was a busy day. I’d been to Flemington racecourse in the Melbourne sunshine. I’d pashed several guys (and even girls), won money on the horses, swilled champagne, took to the DJ decks to spin a few records, hell I even busked on the street.

Was this some kind of crazed rampage day leave scenario? No. My hilarious girl friends took a cardboard cut-out of my head along with them to Stakes Day. What ensued was a sequence of hilarious photos to my phone of my head in a range of compromising situations. It made my day – and apparently a few other people’s too! Funny, because on Saturday I was craving McDonald’s (which apparently I visited at some ungodly hour) and Monday morning I threw up for the first time since I’d been in hospital, which made me think that maybe I had a sympathy hangover, or my cardboard head had been a voodoo doll.

It was a lovely gesture which put a smile on my face for days and reminded me what awesome friends I have.

Proof that I can DJ

Saturday also marked a year since my (unofficial) diagnosis. 11.11.11, a day that will be etched in my memory - the day I took myself to a London hospital, plagued by a cough, abdominal pain and sickness, only to be told several hours after a chest X-ray and CT scan that I had cancer. But I tried not to think too much about it. Right now it is so much more important for me to look forward and embrace the future, rather than dwell on the past, and how far I have or haven't come. So I shrugged it off as another day.

I also missed seeing my favourite band at Harvest Festival that day but that means little to me now.

My debaucherous Day + 12 must’ve been just what the doc ordered, because I woke up on Day +13 to a neutrophil count of 0.1. Could this be the beginning of the great white cell ascension? I wouldn’t know until tomorrow – if my neutrophils continued to rise, then they would call it ‘engraftment’ (which means Megan’s cells have taken to my body, and are now releasing those vital white blood cells). But it wasn’t common for neutrophils to drop as quickly as they rose again during an allograft. Day +14, bang. Neutrophils 0.3. Engraftment was well and truly engaged. I was so, so close to getting out.

Scientific diagram explaining engraftment

My nurse let it slip that they might let me out on overnight leave the next day if my neutrophils kept rising, so I got rather excited about that. I woke to a happy nurse coming into my room, “You’re going home!” Neutrophils 0.5 – I was no longer neutropenic. A fist pump and emphatic “YES!” came as reply. Then the doctors came round and said I could get ‘day leave’ but had to stay overnight in the hospital, and my discharge was likely to be Saturday, so my excitement fizzled. Luckily I had the right people on side, and the nurse in charge did some sweet-talking so I was allowed out on overnight leave instead. I managed to ‘check out’ some time that afternoon, and by then I was too tired to jump up and down with joy, but when I took those first few steps outside and gulps of fresh air, that’s what was happening inside.

I had to go back to the hospital this morning, but they are happy with my progress and have officially discharged me. The nurses and doctors are like beaming proud parents, and telling me “Make sure you come back and visit.” Surprisingly I didn’t cry, even though the Royal Melbourne Hospital nurses have been absolutely amazing. Maybe the lack of tears was because I know that I still have to come back to the hospital’s day centre for tri-weekly check-ups, so it’s not necessarily an emotional goodbye for me just yet. 

My only obstacle at the moment is some niggling morning sickness (nooo, not ‘that’ kind of morning sickness). I’m not sure why it’s popped up so far along in my treatment (as it cannot be chemo-related), but theatrically, I have to run for a toilet or sick bag (now carried in my handbag, it’s the cancer patient’s lipstick) some time before or after breakfast. Not the best start to the day, hence I hope it sorts itself out in the next few days or so.

They also discharged me with enough pills to sink a small ship. Anti-sickness meds, three types of antibiotics, magnesium supplements, pills for my stomach, pills for my liver, steroids (to prevent graft vs host disease) and the very important anti-rejection drugs, which smell bad and are the biggest pills I’ve ever seen. I can now say that to deal with this daily onslaught of meds I am now the proud owner of one of those pill boxes they give out at nursing homes, with four containers for each day marked ‘Morning’, ‘Noon’, ‘Evening’ and ‘Bedtime’. This is what my life has become! I have always said though, this experience has set me up very well for old age, and the pill box reinforces that. (Next thing is the granny trolley).

Pill popper

My kinda granny trolley

It’s been a testing time, and the true test hasn't really happened yet. I still have 85 days to go till I'm in the clear, till I can have some peace of mind, and I know my next PET scan is going to bring its usual dose of anxiety. Some days in hospital were so long, gloomy and boring I thought the end would never come. I feel after all this, I will have the patience of a saint. I still have a long road ahead of me; I will be visiting RMH’s day centre three times a week and I still face the dangers of infections and graft vs host disease, both of which can be life-threatening if left to run rampant. I know those tri-weekly appointments are going to get old and that there are still a few bumps looming on the remaining stretch of road. But I’m out of hospital and that’s the first positive step.

Letter from the inside: day +10

So it’s day +10 and like every drip of saline, the days are slowly trickling by. My neutrophil count has been zero for about eight days now, and unable to leave the ward, I can certainly feel cabin fever coming on. This treatment is testing my patience to every inch of my being. I am hoping that white blood cells, born from Megan’s stem cells, will pop up in my bloodstream soon. But for now it is just another excruciating waiting game. I should just thank my lucky stars that I am feeling pretty good at this stage, but as the nurses say "you are either sick or bored". I'm bored.

For now, I am working towards three goals:

1.     Get out of hospital (hopefully within the next week)

2.     Get a clear PET scan (in about a month and a half)

3.     Get to day +100 with few problems (90 days from now)

So, from a strictly medical point of view, I’m doing pretty well. I started to feel really under the weather at about day +8, when my throat pain increased and I felt weary and drowsy. That night, of the day Obama won his second term of the American presidency, I spiked a temperature. About 90% of patients undergoing my treatment end up with a temperature, so this was no surprise. Additionally a skin infection has flared up on my right cheek, so at the moment I look rather monstrous. I have been on IV antibiotics for this for several days, and it looks like it is being kept under control.

This is much harder than my autograft, simply because things take longer. I was discharged on day +11 of my autograft, and I will no doubt still be here with a zero neutrophil count on day +11 of my allograft. I haven’t even breathed fresh air for coming on two weeks now. There is every chance I could make it to day +20 without my counts increasing, so I have to be patient.

For now I am feeling OK. My throat pain has waned a little bit and they haven’t had to put me on any IV feeding aids, so I’m kicking goals in that department. I can still manage walks around the ward, and still have quite a bit of energy for someone who’s been through the wringer. Got to be positive signs.

As some of you may have noticed, I have resorted to drawing motivational drawings on the whiteboard to keep me going. The box of letters, a gift from my friends from high school, has also helped me remain positive amid the day-to-day gloom. I’ve committed to reading one a day and the photos and cards have put a smile on my face, as well as brightening up an otherwise drab hospital room. Most of all they have helped me maintain a positive outlook – even the notes and cards from people I’ve had little to do with over the past 13 years (showing my age now) – it means a lot that they wanted to drop in a note to wish me well. I still have a few to go – but thanks everybody who contributed, it was such a thoughtful gift.

Another thing that’s given me a bit of a lift is the completion of Jim Stynes’ book, My Journey. Such an amazing and inspirational story; what a man, to face such adversity with such positivity and courage. There is so much I want to quote from this book, but I’ll save that for another time. I recommend this book to anyone, but especially to those who have had experiences with cancer – there will be so much to relate to, and I think it’s a wonderful thing to know you’re not alone. That’s what Jimmy wanted to achieve by going so public with his journey, and I am thankful.

What else? I won $150 by picking a winner (Green Moon) on the Melbourne Cup, which I watched from the comfort of my hospital room. That and Obama’s win, have given me a boost. These are good omens, they just have to be. 

Allo, stem cell transplant #2 … I’m ready!

From diagnosis to now: what a journey, huh?

So, 10 days until my allogeneic stem cell transplant, and I am as ready as I’ll ever be.

Last week I had an appointment with my oncologist. He was beaming when he called me into his office, ecstatic about my PET results. "For a while there I wasn't sure if I would make it to the transplant," I said, and he replied, "That was a very real concern." The appointment was to discuss these PET results and the next step forward, which was the allogeneic stem cell transplant. This part of my journey would be handled by a team at the Royal Melbourne Hospital, so this would be my last appointment with my oncologist at Peter Mac, hopefully for a very long time, or forever, if the transplant goes well. Part of me was sad about this; as much as I have resented the trips to and fro from Melbourne, the lengthy hospital stays, the constant blood tests, follow-ups, phone calls, Peter Mac has become like a second home and the people in it like an extension of my family. It actually makes me tear up when I think about how, as horrible as my journey has been, there have still been many joyful moments amongst it all, thanks to the support of the staff and the people around me. Having spent time in many other hospitals, overseas and in Australia, I have to say that Peter Mac is really the only place where I haven’t felt like a number. With many of the staff I felt like I was their only patient, to the point that I felt surprise, and a touch of jealousy, when I saw them with other patients. The staff there just have this magical way of making you feel like that. 

I have spent most of this week at what will be my new second home, the Royal Melbourne Hospital. I was quite overwhelmed by how much bigger the place is compared to Peter Mac, to the point that you can feel a little bit small. But the staff are all lovely and I'm sure in no time I will develop a similar fondness for the staff at this hospital. I am still trying to navigate my way around its convoluted maze of corridors, but the place that I will be tied to for the next four months is the fifth floor, which houses the Bone Marrow Transplant and Haematology units. 

My week has been filled with a barrage of pre-transplant tests, to check that my organs are all in working order in the lead-up to the transplant. Over two days, I had a bone density scan, bone marrow biopsy, dental scan and exam, a million blood tests, respiratory tests and also met with a number of people such as social workers, dieticians etc. On the Friday (yesterday), I had a PET scan. Everything came back satisfactory as far as the transplant is concerned, so it will be going ahead on October 22 as planned.

So to give you some idea of exactly what I am in for from this date, here is the rundown:

I will be admitted to hospital on October 22. However, for the first five or six days of treatment, I will not be in the hospital, I will be receiving chemotherapy via 'Hospital in the Home' ('home' being a charity-run apartment 5 minutes from the hospital). On about Day 6 I will receive a more toxic chemotherapy and from then on the Bone Marrow Transplant Unit will be my home for the next three weeks, give or take. 

At the same time this is happening, my sister Megan will be getting daily injections of a drug called GCSF, which will stimulate blood cell production. As a result of this drug, Megan's body will produce an abundance of stem cells, which will spill into her bloodstream. On October 30, they will collect the stem cells from her bloodstream by hooking her up to a giant machine, much like the one I was introduced to at Peter Mac way back when I underwent my autologous stem cell transplant in April. It's pretty cool that Megan is doing this for me, but really, she gets the easy part. And I challenge her to match my 63 million stem cell count I managed earlier this year (though Royal Melbourne’s Bone Marrow Transplant co-ordinator did tell me about someone who managed a collection of 140 million stem cells, which made me feel less special).  

By giving me Megan's stem cells, they are effectively giving me a new immune system. My immune system was unable to get rid of the the cancer, so they are hoping that Megan's just might be able to do the trick and eliminate those tiny little cancer cells that are left. These stem cells are given to me via a drip, much like a blood transfusion. They will be given to me "fresh", that is they will be taken from Megan and given directly to me, they won't be frozen, stored or any of that jazz. 

When they give me Megan's stem cells, my immune system will be suppressed. Otherwise my immune system will start fighting hers, and won’t allow it to take over. Which is where the chemotherapy comes in - this will keep my immune system quiet so that Megan’s immune system comes in fighting, and effectively take over from mine.

After I am given the stem cells, I will spend three weeks in hospital, and that period probably won't be that much different to to the two and a half weeks I spent at Peter Mac for my autograft. The risks of something happening down the track, however, are much more pertinent. For three months I will have to visit the Royal Melbourne three times a week so they can closely monitor me and look out for two main things: graft vs host disease, and infections. 

Graft vs host disease occurs when Megan's immune system (the graft) recognizes the cells in my body (the host) as "foreign" and attacks them. This is exactly what we want to happen with the lymphoma; but GVHD can affect the skin, liver and gastrointestinal tract, causing things like a bad rash, diarrhea, vomiting, etc. Results in the past have shown that having a little bit of GVHD is favourable as usually this also means that the graft is attacking the cancer too, but GVHD can be very severe, to the point that it can cause life-threatening complications. If the GVHD is getting out of hand, I will be treated with steroids (Prednisolone, a drug I know well) which will suppress my immune system and stop it from attacking Megan's. The downside of this, however, is that it leaves me vulnerable to infections and it may also reduce the graft-versus-tumour effect. So you can see how a lot can go wrong here, and there is a fine balance that requires close monitoring and medical expertise. 

The next milestone that I will be working hard to get to is 100 days post-transplant. If I can get there with a) no cancer and b) no major complications from the BMT, my contact with the hospital can be reduced to three-monthly scans. It will be a monumental day, and I will get there. 

So am I scared? I am. But I am more scared of the transplant failing to cure me than of what it is going to do to me. I don't expect it to be a walk in the park, but I am ready for it. I am tired, both physically and psychologically, but I know I can take anything this cancer throws at me now. It's been a long year. I have had 8.5 rounds of chemotherapy, one round of high-dose chemotherapy, an autologous stem cell transplant and now I am heading into an allogeneic stem cell transplant, all within 12 months.

But right now I am so, so thankful that I have a date for my transplant and that is happening quickly. Yesterday I got a call from one of my doctors about my PET results. Now remember that the last PET scan I had was two weeks prior and it had come back clear. Well already, yesterday’s scan showed that the cancer is growing again in the chest area and possibly in the pelvis as well. They are small spots, but they are there. After two weeks. Sometimes I am just blown away by how aggressive this cancer is, and how powerless I am to stop it. But I feel so blessed that there was a cancellation in late October, that allowed me to get a transplant this soon. I just hope and pray that it doesn’t leave any cancer cell unturned, so to speak.

I would be lying if I said I still don't worry about the cancer coming back. Relapsing after the allograft is still a pretty big risk, but without the allograft, the risk of relapse is 100% (well, as shown on the scan, I have effectively already relapsed). As long as there is still even the slimmest chance of a cure, I have to keep fighting.

Love this quote - thanks Glenn

The timing of the allograft means I won’t be able to be involved with the Peter Mac bike ride, which I had signed up for as a crew member. It also means that Megan, as my donor, also won’t be able to partake as a rider. This is really disappointing - I just think it would have been so moving to see all those riders, including members of my family, putting themselves out there to raise money for a cause so close to my heart. But then I think of the cancer cells already dividing and multiplying inside of me … and that’s irony, right? That the one reason my family is taking part in this ride is also the reason I can’t take part.

Anyway, to conclude: today I was sitting on the tram and as it tends to do on long public transport jaunts, my mind got thinking: to how wonderful the last few months has been. I have enjoyed trips away, weekends with friends, laughs, catch-ups with old friends that are just so wonderful in such a unique, warm way because it’s like no time has passed. I want to thank everybody that I have spent time with over the last six to eight months, everyone who has sent me messages, taken the time to meet up with me, put a smile on my face and served as a wonderful distraction and a reminder of how lucky I am to be surrounded by such awesome people. You all know you are. And an extra special thank you to those who have organised and supported recent fundraisers for Peter Mac, it means so much. Despite all the difficulties I have had this year, there have also been plenty of uplifting and genuinely funny moments, and they are the things that keep me sane.