Every second counts ...

This was supposed to be a positive post. I had lots of good news to give. I had my final radiotherapy session last Thursday. The sun has been constantly shining (a rarity in Melbourne). I have hair - and I am absolutely loving this short pixie do that I would never have had the guts to try out otherwise. I am putting on much-needed weight. I am down to a low dose of steroids (10mg a day) and haven’t crashed yet. I feel strong, I have energy, and I am very rarely at a loss of something to do. In recent weeks, all I have been focusing on is how good I have been feeling, and stopping my mind from drifting too far ahead (PET scan on March 14, gulp).

But I write this entry with a heavy heart. Last week a friend of mine was killed in an accident. We went to the same high school (we were in the same class from year 7-9), went to the same university and was someone I respected greatly and would always make time for. Absolute top guy, who has left a massive gaping hole in so many lives. It saddens me that I will never see him again, hear him tell his hilarious stories, reminisce about school days and just have a chat and a laugh. What makes it even more tragic is that another one of my classmates, who was from the same friendship group, passed away suddenly only weeks before. Both these people have left behind partners, parents, siblings, close friends and colleagues, and I can’t even begin to fathom the shock and sadness they must be experiencing. In the last five years, my year level, Class of 1999, has said goodbye to four classmates. I’ve only just hit 30, and I really don’t want to attend any more funerals. It just isn’t right.

There is really no way to make sense of it, I’m not even going to try. All I can take away from this is the fact that life is fragile, and you really can’t waste a single moment. I tend to talk a lot about doing things, but laziness or whatever else will make me put it off or fail to get around with it. I’ve decided that has to change. I hope most people I know live long and happy lives, but you just don’t know what is around the corner. Make sure you are living the life you want to live now. Not tomorrow.

Another thing I have learned is that my year level is full of inspiring and wonderful people. The classmates we have lost were wonderful, dynamic people who lived full lives and brought a lot of joy to a lot of people. But also, to see the way my fellow school friends rally around each other at grief-stricken times like this, is truly moving. I know from my own experience that my classmates are thinking of me and wishing me the best on my own journey, and I have reconnected with a lot of awesome people. It doesn’t matter how many years have passed or how often you have seen that person in recent years, these people still manage to reach out and put a smile on your face. I don’t think I ever stopped to think about that before. I feel really proud to be have graduated with Catholic Regional College, Traralgon's Class of 1999. A top bunch!

Despite these recent tragedies, I am making sure I remain as positive as I can about my own situation. If anything, it has given me more resolve to beat this thing - I don’t want to put my year level through any more heartbreak.

Sad, but pressing on. Next post will be more positive, I promise. Live for today, plan for tomorrow, love to the fullest.

100 days ... but who's counting?

One-hundred days ago, I was sitting in isolation in the Bone Marrow Transplant ward of the Royal Melbourne Hospital, anxious but full of anticipation about the journey ahead. My white cell blood count was written clearly on the whiteboard: zero; meaning that my bone marrow was primed for the its new stem cells to arrive. The infusion was quick and simple and uneventful, but the procedure was potentially life-saving. Sitting there on day zero, I felt the weight of the monumental task ahead. At that stage, Day +100 felt like an elusive dream.

Well I've made it. I'm officially at Day +100, that magic day. But it's not the happy milestone I expected: it's just another day. 

Day +100 has been mentioned a lot in this blog, and some of you might wonder what is so special about it. Day +100 is what every bone marrow transplant patient is striving for, because, ideally, on this day, they are set free from the hospital regimen of weekly blood tests, check-ups and scans. It means they have got through the 'danger period' and on their way to recovery and independence. It is the day they walk out of the hospital and get on with their lives.

Today I didn't get to do that. While essentially, I was able to walk free of one hospital, I am walking right into another, and my treatment is ongoing. 

I don't really care to dwell on it; Day +100 as a milestone is uneventfully over, but this just means I get to create another. I know better than any other person that things often don't go to plan. I have often likened my journey to sitting on a raft being pushed down a river, and I simply have to go where the river takes me. If I hit rapids, there is no sense in fighting, I simply have to ride it out and have faith that I am going to get out the other side. This visual metaphor has been a very calming influence for me.

So in the past three weeks or so in which I haven't wrote, many things have happened. 

1. Slight changes to the game plan, again

Last time I wrote, the plan was to get 25 sessions of radiotherapy to shrink the tumour in my chest to a manageable size, so that the graft (my new immune system) can carry on and do its work fighting the lymphoma. This plan still stands, however, some extra ammunition has been added to the mix in a bid to hit the lymphoma with everything we've got. 

Firstly, I'll be getting a drug called Rituximab, a drug I know very well. It has featured in every single cycle of chemotherapy I have had in the last 15 months (which adds up to more than 10 cycles now). Rituximab, which was introduced in the '90s, destroys B cells, so it is very effective in treating my cancer (diffuse large B-cell lymphoma). Alongside radiotherapy, it is hoped this drug will have a dramatic effect. The side effects of Rituximab are minimal compared to other chemo drugs, so I don't need to worry about the usual symptoms like low blood counts, loss of hair, sickness, etc.

The other drug on the table is Interferon. This will be used to boost my new immune system, to kick it into action and get it fighting the lymphoma. At this stage, the plan is that I will receive both of these drugs in two weeks, following the completion of my radiotherapy. 

2. Tell me why I don't like Tuesdays

I have been admitted to hospital twice in the last two weeks or so. The first time was Tuesday, January 22, when I came into Peter Mac for my Rituximab. I was feeling pretty average that morning, but this is not entirely unusual (I'm not a morning person at the best of times). When they did my observations, it was discovered I had a low-grade fever (37.5), an elevated heart rate (140bpm) and low blood pressure. Blood tests also showed my white blood cells were at rock bottom (0.1). Bang - hospital admission. I stayed for two nights, no evidence of an infection was found, and I was discharged just in time for the weekend.

3. Aussie Day shenaningans

I had friends visiting, so after my "release" we made a weekend of it. This involved dinner in a restaurant over the twinkling lights of Melbourne, singing our lungs out to karaoke till all hours, nibbles and games at the park and some Hottest 100 tunes (the worst countdown in the history of Hottest 100 countdowns), energetic Just Dance-athons and a cheeky road trip to Mornington on a perfect blue-sky day. With the beauty of hindsight, I now acknowledge that it was probably overload but I would do it all again in a second. 

If you haven't sang karaoke for five hours straight to an empty bar you haven't lived.

Bogan? Me? Nah.

4. Tuesdayitis strikes again ... 

The Monday followed Australia Day I was suffering burnout. I felt ill and could barely peel myself off the couch. Once again this wasn't altogether unusual. For the past couple of weeks since I had been taken off steroids, I had been suffering extreme fatigue, nausea, loss of appetite and an itchy rash, things I assumed were related to steroid withdrawal. I had dropped kilograms from my frame, weight I couldn't really afford to lose.

But the shortness of breath I experienced on Tuesday morning was something else. I had walked from the apartment, into the lift, out of the lift and into the car, and I felt like I could barely breathe. I felt tight in my chest, it felt exactly how I would expect an asthma attack to feel. And I panicked. How can a walk of roughly 10 metres leave me feeling like I was bordering on cardiac arrest? Something wasn't right.

My breathing had steadied by the time I got to Peter Mac for radiotherapy, but when I was called from the waiting room I had a dizzy spell. As I walked to the machine stars filled my vision and I had to steady myself as the radiotherapy assistant asked if I was OK. The nurse was called and after I registered a temperature of 38.1 and an elevated heart rate, I was again admitted to hospital. Unlike my previous stay, this time, I genuinely felt unwell enough to be in hospital so I accepted it.

Four nights later, the verdict was that I was suffering some lung inflammation. Scans and X-rays showed that there was no permanent damage or signs of infection in the lungs, so it was assumed that the inflammation was in its early stages and needed to be treated before it got serious. The doctors believe the cause of the inflammation was GVHD, and the radiation possibly exacerbated it. 

The good news was my chest scans showed that the tumour in my chest had shrunk, by a third of a centimetre, and considering its overall size is just more than two centimetres, this is significant shrinkage considering I'd only had two weeks of treatment. HELL YEAH.

5. Back on the 'roids again

I was discharged on a hefty dose of Predisonolone (steroids), the remedy for lung inflammation. Since then it's like somebody has flicked a switch. Instead of picking at my food with disinterest, I want to eat everything in sight. I have energy, I can walk reasonable distances, my cough has disappeared and I feel like a new woman. This is great, but it always concerns me what a dramatic effect the steroids have on me, and hence the complete burnout I experience when they are taken away. But the important thing is that they are taking care of the lung inflammation and right now I feel better than I have in weeks. As a result I am getting out and about, remaining active and eating as much as possible to make the most of this steroid high. And it's kind of fun!

While I am in a good place right now, the past few weeks haven't been easy. It's been a tumultuous few weeks and sometimes when I'm asked "how I'm holding up" I have to hold back the tears. It's sometimes difficult to accept that after everything I've been through, I still feel like I'm going backwards. I'm tired physically and mentally and so frustrated. I hate that my life is dictated by radiotherapy and clinic appointments. I hate having awesome weekends with friends and family only to return to the crippling reality of hospitals and waiting rooms. I hate seeing all the other patients around me at Peter Mac having such a hard time (though their strength and joy amid the despair is inspiring). I hate that I am a rake, the lightest I've been in about 12 years or more. I hate that I feel I am getting physically weaker, not stronger. I hate cancer so much! 

6. Upwards and onwards

So what's next? I will continue on with the radiotherapy for the next couple of weeks. I have had 14 sessions thus far, so I am just over halfway there. I will rejoice the day I don't have to lie down on that cold bench, get poked and strapped and drawn on, locked into a suffocating mask and get lasered with radiation beams. Although I find myself falling asleep during a lot of sessions, so it's clearly not stressing me out too much. The science of radiotherapy really astounds me, I just can't believe that these radioactive beams are entering my body from all directions and sizzling a tumour embedded deep inside my body. I am always so inspired by how fast cancer treatments are moving - I think in the future radiation will be able to destroy a tumour in no time at all without affecting other delicate organs, chemotherapy will destroy cancer cells without making people sick, and doctors will be able to wire patients' own immune systems to fight the cancer themselves. This is the direction everything is heading.

Around the same time I finish the radiotherapy in two weeks, I will be taken off the steroids again and I will begin on the Rituximab and Interferon which, it is hoped, will help my new immune system to mop up the rest of the lymphoma cells and finish the job. Once again I can only hope and keep all my fingers crossed that this will happen.

At the moment, I have two very promising signs: firstly, that my immune system is interested in fighting the cancer (evidenced by the apparent GVHD and other symptoms) and that radiotherapy or Rituximab or both, are shrinking the tumour. Stuff is working, and I can only be happy about that. 

Oh did I also mention I went to a wedding? Naomi and John, I am so happy I was well enough to share your special day with you - such a perfect day!

·     

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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.

Oohh, we're halfway there (sang to Bon Jovi's Livin' on a Prayer)

Some things that have happened:

1. I am really glad the world didn’t end yesterday. I didn’t spend the whole year fighting for my life for some stupid Mayan prophecy to take away all my hard work.

2. I reached day 50! But instead of celebrating, I got admitted to hospital. I just got discharged today after three nights back inside (just to avoid my mum’s cooking and the Christmas shopping crowds. Just kidding, mum). Nothing major, but on Wednesday I woke up feeling really unwell and I had a temperature. I had no energy, I felt nauseous, fatigued, could barely stand up for short periods, short of breath, just felt positively awful. I called the oncology unit and they told me to go to emergency. Which was probably a mistake; I was in ED for a long time doing nothing but feeling horrible and no one even took my bloods or the routine things that doctors/nurses are supposed to do when a cancer patient has a temperature because no one was trained in handling a Hickman’s Line. Anyway, while examining me the doctor asked me how long I’d had the rash on my stomach for – which took me by surprise because it was the first time I’d noticed it. I also had it on my back. A rash on the skin can be a symptom of graft vs host disease, so later that day they took a skin biopsy (anaesthetic and a needle injected into upper back). I got admitted into hospital, back on the bone marrow transplant ward where I spent my three weeks in November, so a place I know well. I didn't get the penthouse suite this time though. In the end, the good news is that after three nights, tests show no evidence of GVHD or infection, the bad news is that I spent three nights in hospital for really no reason at all and I am behind on my Christmas shopping. My burnout on Wednesday was probably due to steroid withdrawal, as the doctor had stopped my Prednisolone two days earlier. I have since been put back on it, so they can slowly wean me off it instead of going cold turkey, and I feel 100 times better. It’s actually scary how good the steroids make me feel, I feel like I have been floating on an artificial high for the last 50 days and I fear crashing and burning again when the steroids stop again in about a week. But I need to come off them – a) they suppress the immune system, and while they prevent GVHD they can also reduce the graft v lymphoma effect, b) long-term steroid use can have some nasty effects c) I am pretty sure they are contributing to the fact I haven’t had a decent night’s sleep in weeks. Being back in hospital reminded me how much I don’t want to be back there ever again. The nurses were all surprised to see me there, since all they’d heard were stories about me going to Devo concerts and stacking my bike (see points 3 & 5)

3. I saw my doctor at a Devo concert. I scored last-minute free tickets to Day on the Green through a friend (and I mean on-the-day-last-minute). So I called my little sister Megan who was on her way to Melbourne to visit and asked her if she wanted to drive to Rochfield winery to see The Church, Devo and Simple Minds. The answer was in the affirmative.

However, mutiny struck when I was reminded that I had two sisters and the other one I had not invited was a Devo fan. In the end we all agreed that all three of us could go to the festival, and we’d all pitch in $30 for a third ticket, as they were still on sale. Resolution reached. When dad said we could take his XR6 the day only got better.

A great day was had. There was a bit of rain, and at 100 years old or however old they are now, Devo have definitely still got it … I’m not sure I would say the same for Simple Minds, though. I think the crowd outsang the lead singer on Don’t You Forget About Me but an enjoyable performance nonetheless. But a highlight was definitely bumping into my transplant doctor. I saw him, wearing nothing but a black T-shirt and shorts, rocking out with his lady friend. “Is that … Dr Ritchie??” I said as I walked up to him. It took him a few moments to recognise me – he was used to seeing me around the ward in daggy tracksuits, so it makes sense that this tall girl in a wig, red lipstick and short shorts would have had him stumped for a few moments. For a second I thought he was going to tell me off (I should be taking it easy, and I should be avoiding crowds) so I kept dropping into conversation that I had reserved seats and this whole trip was a last-minute thing, but he seemed fine about it; I think he was more worried that I would blow his rock pig alter-ego. Then about 20 minutes later, I bumped into a Peter Mac nurse I knew quite well, she’d looked after me at the haematology ward several times. She also took ages to recognise me. “You’re on day 31 of your allograft?!” she said in disbelief. Yep, this is my life now – bumping into doctors and nurses in the 'real world'.

Some guy wanted to take our picture because we are awesome

DEVO

Simple Minds

4. I recorded my song. I went into the Royal Melbourne Hospital recording studio (yes they have one of these), had a session with Emma O’Brien and recorded my song in one take. It was a great experience. Will upload song and share on here soon :)

5. I fell off my bike (well my sister’s bike; maybe it was karma for borrowing it without her permission). I had just ridden down to the Queen Vic markets with a friend Lucy who I’d just spent a lovely weekend with (very short ride) and was on my way back alone when my handbag got caught in the wheel and I went over the handlebars, right on Peel Street, in the middle of a North Melbourne bike path (yes, I was left on my own for 5 minutes and this is what happens). I’d hit my face on the ground and my tooth had gone through my lip, I could already feel where it was chipped. This lovely young couple stopped to help me, and then another lady, who was an oncology nurse, who ended up driving me to the apartment to drop off the bike and then to the hospital emergency department; executing several illegal U-turns to do so. I wish I had’ve got her name, she was so kind. The ED doctors cleaned me up, gave me a stitch in the lip and prescribed me some more antibiotics (yay! More pills). I got a tetanus injection and then I could go home. Luckily Jacqui arrived back from Meredith to be with me in ED. I felt a bit teary after my fall and I wasn’t sure why, I think I just felt vulnerable and I am very, very lucky that I didn’t do more serious damage. A broken bone or any major injury would have been a major setback. The next day my fat lip had blown out to major Lana-Del-Ray proportions, and I was going to try and convince my doctor that I’d got into a punch-up at the pub but he already knew the story because ED had called him. So for about a week it all looked a bit like a collagen injection gone wrong but the grazes are healing nicely now and I have some more scars to add to my impressive collection. My pride was hurt more than anything else.

APOCALIPS

6. I had an amazing weekend in Daylesford with some members of my dad’s massive extended family. We hired a stunning 18-bed mudbrick house in the bush and spent two days eating awesome food, swapping hilarious Kris Kringle presents, playing charades and board games and walking around the pretty town of Daylesford. It was such a great weekend, and my first trip away from Melbourne since the transplant, apart from a day trip to Torquay a few weekends ago.

The cousins. Aaaaw, what a beautiful bunch of people

7. This Christmas I have several things to celebrate. A) Not being in hospital. B) That I am alive. C) That I have the best immediate and extended family a girl could ask for. Last year I spent Christmas in hospital and that really, really sucked. As long as I steer clear of anything with two wheels I will be staying well away from hospitals this year.

So may your Christmas be merry, and amid the festivities of overcooked turkey, family feuds, loud drunken rants from relatives, rubbish Christmas presents, bad bon-bon jokes and cheap champagne, spare a thought for those who are stuck in a hospital bed (because I was just there and there are plenty), or attending to a person in a hospital bed, or eating Soup for One out of a can in a darkened apartment (that was almost me in the UK one year) or just having a shittier Christmas than you. Good health is the best Christmas present you could ask for and if you have that, feel blessed.

Looking forward, looking back

As the year is nearing to its end, and I've now reached my one-year anniversary of arriving back to Australia after my diagnosis, I'm going to get reflective. I mentioned in a previous post that it's far more important for me to look forward than back, but now as a really difficult year draws to an end and I can look at it with a bit more perspective. Additionally, one thing I have never actually got around to documenting on my blog in detail was my last week in London and my journey home (and besides, the world's going to end soon, and I still have many more blog posts to publish). 

In the beginning ...

I started my first round of chemotherapy in London on Friday, November 25, 2011. The whole process was very rushed - exactly two weeks after I had walked into an emergency room with some abdominal pain I found myself hooked up to a drip getting toxic drugs pumped into my veins. I don't think anything could've prepared me for what lay ahead. I remember a group of cancer patients in their headscarves and beanies sitting near me in the clinic casually discussing their stem cells and when they'd be "getting them back" and all felt a little surreal. Little did I know at that time what a big role stem cells were going to play in my own journey. This was when I entered the parallel universe of cancer treatment, but I had no idea how hard it was actually going to be. 

That first round of chemo was really difficult, probably one of the worst ones I went through, physically and emotionally. The oncology nurses sent me home with a list of symptoms to look out for - if I got a fever, diarrhoea, vomiting I had to call the clinic immediately, no matter what the hour. I spent the first few days after chemo feeling relatively OK but I was a bit on edge about everything; I just didn't know what to expect.

A few days into chemo I got my first intrathecal, a chemotherapy injection into my spine. The chemo travels through the spinal fluid and to my brain, to protect it from the cancer.  I had to curl up in a ball while the doctor stuck needles into my spine. The worst part is the stinging of the anaesthetic they inject first that numbs the area before they inject the chemo. Intrathecals are also annoying because you have to lie flat in bed for at least an hour after it's done to prevent headaches. The recommended time is actually four hours but there's no way anyone was going to keep me in bed that long. I have now had six intrathecals all up and hated them all, they were just time-consuming and annoying. One of them, I think it was during my fourth round of chemo, gave me a lot of problems - ringing in my ears, heavy limbs and neck pain, it was just terrible. 

On the following Monday, I said goodbye to mum who had to take a very difficult flight home, alone, to attend my brother Sam's graduation in Australia. The next day after his graduation, Sam was going to take a flight to London, spend a week with me, then fly with me home. It meant I was going to have about three or four days in London on my own, and all I can say is thank God for Matt who had taken several days off work because it was around then that things turned pretty grim.  

Wednesday and Thursday I hit rock bottom. Thursday I couldn't keep breakfast down and ended up retching it up in the shower. I was pale and weak and kept having to go lie down. "It's like a really bad hangover," I said, "without the fun part." On top of this I was emotional wreck, which was probably a combination of the sickness making me feel so frustrated and helpless and my hormones wreaking havoc because of the fertility treatment I was on. Also, having to say goodbye to Matt was weighing really heavily on me. There were lots of tears at this point, lots of emotion. 

Friday I felt a bit better, and that night Matt and I went for a walk down Green Lanes with the housemates' dog. I realised this had been the first time I'd been outside since Tuesday. It was nice to get some ‘fresh’ air though not sure there’s much fresh about the air in Harringay, except for the fact it’s cold.

Saturday was horrible, I was back to feeling awful again. Weak, nauseous, emotional. Matt went home because he hadn't even changed his clothes in three days. I’d really enjoyed the time we’d got to spend together, even if I was in a bad state for a lot of it. We still managed to share some laughs, and tears, and I was impressed by his cooking skills. He went home after we shared lots of hugs and tears.

Sam arrived from Heathrow that afternoon, and my housemate picked him up in his car from Manor House station. I was happy to see him, but too fatigued and sick to really show it. It was a pretty mellow weekend, I couldn't do much but lay around.

On Monday, I had to head into the UCLH clinic for my routine blood tests. I woke up feeling terrible once again. I was pale, I looked and felt horrible. I spent the car ride to the clinic with my window down, wanting to throw up. The tests showed that my neutrophils were just sitting under 0.5, which meant I was neutropenic and at risk of infection. The lymphoma nurse sent me home with three days' worth of GSCF injections to boost my white cells. We got a cab back to Harringay, and I when I stepped out of the cab I threw up, right there on the street. I had to shut myself in my (tiny) room and avoid my housemates as one of them definitely had a cold of some description. 

A couple of days later I was feeling much better. My white blood cells had soared. A chest X-ray showed the tumour in my chest had shrunk significantly. This was the first time my lymphoma had been exposed to chemotherapy and it had really knocked it around. The doctor was happy for me to fly home. It felt awesome, but so scary at the same time. It was really happening, I was leaving London. Amazingly I managed to pack my whole life back into my backpack and a couple of extra bags - I had really accrued very little in my 18-month stay in the UK.

The care I got in the UK via the UCLH was exceptional. My lymphoma nurse Barbara was an absolute gem and really went above and beyond to ensure I was OK. She gave me a lot of her time and to this day we are still in contact. 

It was a cold, cold day I left London. It was Saturday, December 10, 2011. Saying goodbye was difficult. On the Friday night I'd had a wonderful farewell with friends in Stoke Newington until 3am. Still a rather subdued affair compared to what it would have been had I left in different circumstances. But I was happy to just relax and share some laughs with good friends. The perfect way to say goodbye.

Saying goodbye to Matt was really, really hard. We were on our way back from dinner in Islington and he got off the 341 bus at Church Street and walked away, down the dark street and I didn't know when I was going to see him again. I was already crying at Newington Green, and I cried all the way home. Sam and I were running a bit late to get our cab to Heathrow, and this was not helped by the fact that there was a car, engulfed in flames, on Green Lanes, which had stopped all the traffic. We got off the bus and walked home, as a crowd of people just stared at this burning car. A rather odd sight and end to my life in London. We grabbed all our luggage and piled into a cab. As I took my last bag, left my keys on the shelf and went to close the door, I hesitated for a moment, took one last look at what had been my crazy, but warm home for the past year. I was certainly going to miss it, and the people that lived there.

Bye London, I shall miss you

The roads to Heathrow were jam-packed with traffic and the cab was barely moving. I was having some major anxiety that we were going to miss our flight. After all these delays, re-booking of flights, all this drama, we were going to miss that plane home because of traffic? The cabbie ended up veering off the main motorway and taking a "short cut" to the airport along all these backroads. I have to say, I had my doubts but I have to hand it to him for managing to get us there on time. 

On arrival to Heathrow, we were greeted by a Qantas staff member who told us we had access to the British Airways Galleries Lounge and that we had been upgraded to business class. This was a big surprise to us; we hadn’t expected this kind of treatment. I know that one friend emailed the Qantas executives explaining my situation and my brother had also called them to see if maybe we could avoid having to wait in crowded areas or maybe get more comfortable seats on the plane. But being upgraded to business class was pretty awesome. We had our own little cubicles and seats that went all the way down to horizontal, which even had a massage option (which was actually rather uncomfortable). We had ample leg and storage room, decent food, private TVs with top-quality headphones, bubbly on lift-off - we even got complimentary pyjamas and an amenities kit. The staff were falling over themselves to make us as comfortable as possible. It was pretty amazing and I'm pretty sure that's the first and only time I will ever fly business class because I have looked up the prices and it does not come cheap. I managed to sleep a lot of the way home and it just made our flight so much more bearable. Really have to hand it to Qantas; they made a difficult flight a lot easier.

Me and Hippo Jo in transit

I can't even describe the feeling of coming home ... it was like a dream. Seeing my family at the airport, being welcomed by Melbourne's wide streets and breezy sunshine; it all felt so strange but familiar. Another amazing surprise when I got home to my parents' place was my old bedroom. In the weeks leading up to my arrival, my siblings, and uncle and cousins had worked tirelessly to repaint, recarpet, refurnish and decorate my old bedroom which looked absolutely fantastic. Everyone had also printed out a collection of photos which they'd arranged on the wall. A lot of time and effort went into it and I was really touched. What a homecoming.

Me, having just arrived home, and my photo wall

And the rest is history. 

In the past year and a bit:

• I have had bucketloads of chemo. Three rounds of R-CHOP, 3 rounds of Hyper-CVAD, 6 intrathecals (chemo injected into my spine), 2.5 rounds of Gem-Vin, one round of high-dose chemotherapy (cytarabine, etoposide, carmustine, cyclophosphamide) one round of low-dose chemotherapy (rydarabine and melphalan). This also doesn't include the countless number of oral meds I have had to take daily all year.
• I have had an autologous stem cell transplant (April) in which my own stem cells were collected and returned to my bone marrow after high-dose chemo.
• I have had an allogeneic stem cell transplant (December) in which my sister's stem cells were collected and delivered to my bone marrow after low-dose chemotherapy. 
• Had five infections during chemotherapy, all of which I was hospitalised for. 
• If you added up all the days I spent in hospital, including those as an outpatient, I reckon they'd take up half the year. Easily. Maybe more.
• My hair has fallen out four times. 
• I have seen some wonderful places with some wonderful people. I have travelled to Perth/Margaret River, Brisbane, Sydney three times, Wollongong, the Hunter Valley, the Grampians, Meredith (Golden Plains), Falls Creek, Daylesford/Hepburn Springs, the Great Ocean Road, Wilson's Promontory and the NSW Far South Coast (Merimbula/Eden). 
• I climbed a really big tree, went snowboarding, attended a couple of festivals and wrote and recorded a song.

And throughout everything my family, especially my mum, have been right by my side, have been my rock in times of darkness. In this respect I have been very lucky. Actually, I'm pretty damn lucky to even be here today, when it comes down to it, and I'm thankful for each day.

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.