Saturday, December 22, 2012

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

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.

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.

Thursday, December 13, 2012

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.

Friday, November 30, 2012

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. 

Friday, November 16, 2012

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 5th 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.

Friday, November 9, 2012

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. 

Wednesday, October 31, 2012

Sister stem cell superpower!

Tuesday, October 30 was stem cell collection and donation day, also known as "day zero" and what a beautiful, sunny day it was. The sun was shining, the birds were chirping, Melbourne was hustling and heaving under a deep blue sky … 

Beautiful day for a stem cell transplant (view from my window)
Megan came into the Royal Melbourne to begin collection fresh and early at 9am. For about 5-6 days prior to collection, Megan had been given twice-daily injections of a drug called GSCF to boost her stem cell production. This was more an inconvenience for her than anything, but GCSF can also cause symptoms like bone pain, which luckily Megan didn’t experience much of. Since my counts were still good on stem cell day, I was able to trundle down with my "pole" from the BMT ward to apheresis where Megan was hooked up to the machine (much similar to the machine I was hooked up to for my autograft, but smaller and more 70s looking) and chat to her while those stem cells were filed away. Megan’s blood was being divided into three bags, one of plasma, one of the “dregs” and one of the precious stem cells, which resembled a burgundy-coloured liquid in the bag.

Phase 1: harvesting ...
Megan had to remain attached to this machine for a good three to four hours to ensure they got a decent collection. At about 1.30, they were done, and a cell count was conducted. They had collected about 10 million stem cells from Megan; they would be giving me 8 million (more than enough) and freezing 2 million for a rainy day.  (She didn’t manage to smash my record of 63 million over two collections earlier this year, but I won’t rain on her parade. She did a good job!).

The process of the allo stem cell transplant is rather anticlimactic. It’s nowhere near as involved or complicated as getting an organ transplant. As my nurse Andy quipped, “It’s just like a blood transfusion, only crunchy”. The nurses had all warned me it was boring, “even more boring than an auto transplant”. When I had my auto SCT in April, it was all very futuristic looking with the cryogenically preserved cells arriving in a frozen cylinder and being dipped into a “mini pool” for defrosting. But this time, for the allograft, the cells were delivered “fresh”. They were slung up onto the pole and as they like to infuse them quickly, they vanished rather fast. Nonetheless, there was a captive audience (mum, Jacqui, Megan, Tim and about 2-3 nurses) to witness their delivery, and while it wasn’t a cataclysmic, Captain Planet-esque combination of sister superpowers like some might’ve hoped, it was a jovial occasion.
Megan's stem cells, transported to my room via a state-of-the-art cooler bag
Before they gave me the cells, they had to give me some pre-meds, one of which was Phonergan, used to treat allergic reactions. Phonergan has a habit of making me very drowsy, and as expected, this dose went straight to my head, when I instantly started slurring my words and letting slip some “Bethisms” (that were then published on Twitter, thanks Tim and Jacq). At least it added a little excitement to what was a seemingly mundane process.

But despite outward appearances, it was a momentous occasion. I now have a little bit of Megan inside me, a gift that hopefully marks a new lease of life. Now I just have to wait for a week while her stem cells grow and develop, and produce vital white blood cells which we will hope will fight the cancer, and finish the job that my immune system, and the chemo, couldn’t manage to do. I will have a new immune system, a new blood type (from B+ to AB+) and maybe even a cure for my hayfever if I’m lucky. (Just kidding, I don’t really care about the hayfever part, though that would be nice.)

In the lead-up to and following the transplant, I have been on a constant infusion of anti-rejection drugs to ensure my body doesn’t reject her stem cells, and I will stay on this medication until they eventually wean me off it, hopefully around that magical day 100.

I am now on day +1 of my transplant and for now, it is just another waiting game.  Waiting for my blood counts to drop, and Megan’s stem cells to kick in. I am unable to leave the bone marrow unit, but they encourage me to walk around, so all I can really do is little pathetic laps of a very small space, wheeling my “pole” along with me. If anything, I now have some idea of what it must feel like to be Julian Assange.
If all goes well, I will be out of here in 3 weeks, give or take. I am bored already, but the less eventful the coming weeks are, the better, really. I know I still have a long way to go, but every day is one day closer to getting out of that door. 

Me and Hippo Jo, in this together

Admission accomplished!

So much to report this week that I think I will have to split this into two posts. But above all, two main, potentially life-saving things have happened:

1. The "Flying Dorts" cycling team completed their 200km Ride to Conquer Cancer with flying colours over the weekend, contributing a whopping $18,000+ towards vital cancer research at Peter Mac (pictured below - this photo is now blu-tacked above my daily cell count whiteboard for inspiration)

2. The stem cells are in! About 8 million stem cells were taken from Megan via apheresis yesterday morning and brought to me in the ward in the afternoon, and administered by drip. Not much really happens for a few days until these stem cells grow and develop new white blood cells and hopefully the "takeover" begins. 

I'll focus on the first point for this post, but to prevent me (and you) from getting lost, I will cover events in chronological order. 

On October 21, I checked into the BMDI (Bone Marrow Donor Institute) apartment that will be my home for the next few months (apart from the 3-4 weeks I spend in hospital). These apartments are run by a charity called the Fight Cancer Foundation, of which Hugh Jackman is actually a patron (there is a wing named after the Jackmans in BMDI house). It's a great apartment and only a short stroll from the Royal Melbourne Hospital, so we've been lucky to secure such a facility.  

My first five days of chemo were administered in this apartment by Hospital in The Home (HITH), which was great because it shortened the time I had to spend in hospital significantly. It was kind of like having your own Mary Poppins who popped in every day with her collapsable pole (to hang the chemo from) and bag of goodies, though there was no 'Spoonful of sugar' song with it, thankfully.  The chemo, Rydarabine, was given as a 30-minute infusion every day and was pretty gentle stuff. I didn't really get any symptoms and remained very active over these 5 days, getting out and about.

Then arrived Saturday, which was a big day. As well as being my hospital admission day, it was the day my cousin Kate, brother Sam, sister Jacqui and dad Keith set off on their massive 200-kilometre challenge, The Peter Mac Ride to Conquer Cancer. The ride began in Albert Park and ended in Healesville on the Saturday, then it was all the way back to Albert Park on the Sunday. Amazing feat and so proud to see all four manage the whole ride without giving up – they should all be proud, as I am. What a team!

The "Flying Dorts" crossing the finish line
That Saturday morning I decided since my family was tackling a brave 200km in two days, then the least thing I could do is drag myself out of bed at 5am to see them off at Albert Park. Typically, it was a freezing Melbourne morning, drizzling and grey with an icy wind blowing. But it was inspiring to see all the cyclists in their yellow vests, and of course as I hugged the four members of my team and wished them luck, it was impossible to hold the tears back. A moving moment, an amazing event that raised $6.2 million for Peter Mac, making it the biggest single fundraising event in Australia. We raised more than $18,000 (and still counting, I think) of that total and that was thanks to the generosity of our friends, family and supporters. Having been through the list of donors on the website, we have been so touched; some of you have been beyond generous. At loss to thank everyone individually at this moment, please do know that every donation has meant so much, and that includes everyone who attended the range of fundraisers we've held over the past weeks. 

Megan and I at her High Tea fundraiser
I’ve also started digging into my wonderful box of letters presented to me by Suze and Mars at the High Tea (which was great, thanks everyone who attended and to Megan and Mum for putting in the hard yards to organise and cook). I have decided I will read one letter a day while in hospital and have been very touched by what I have read so far. In the last few weeks, fundraising for this ride has taken me to a trivia night, a Grease movie night (so much fun singing along, forgot what an awesome classic the film is), Megan’s High Tea in Traralgon and unfortunately I missed my brother’s gig in Bendigo but heard it was a huge success! I’m sure the ‘Moxie band’ will be getting more bookings, my 31st next year maybe? In the meantime, my story has also appeared in the Latrobe Valley Express, Bendigo Advertiser and The Melbourne Times. Am happy to admit I am a bit of a media tart, just send any enquiries via my agent :)

My wonderful box of letters

News travelled as far as Bendigo ....

It's been an action-packed time. After my last pre-transplant test about 2-3 weeks ago, my PICC line was removed from my arm. It had been my companion for three months. I remember getting it put in back in July was so painful, not physically, but mentally because it signified the start of a very difficult period of further treatment. The time of relapse was a very dark period for me, it floored me, probably even more than the original diagnosis did, and put a big dent in my spirit. Three months later (now) I feel that psychologically I am in a much better place. When I start worrying about the transplant outcome, I tell myself not to worry about something that hasn’t happened yet, but that is easier said than done. I think about it every day, how can I not - it's my life? When my mind wanders to a life in remission – growing my hair back, going back to work, getting my independence back, getting my strength back, I stop myself, as it hurts too much to think that maybe that won’t happen. I have thought about the alternative, death, too, and I know I definitely fear that a lot less than I used to. It's not a nice thing to think about, but it really is something I do have to think about. 

But one positive thing about all this, is that I have tolerated the chemo very well so far which has allowed me to do a lot of things that other cancer patients simply cannot do. Like go to Queensland, for instance. Two nights in Brisbane, two nights in the Sunshine Coast (thanks to my cousin Dan and his lovely girlfriend Stace). 28 degrees, catch-ups with some wonderful friends, swims in the ocean, pool and Jacuzzi (which wasn’t possible with my PICC line nor with the Hickman’s Line I got inserted last Monday – I made the most of this week of line-less freedom!) Amid the drudgery of hospitals and appointments, my life has glimpses of awesomeness, and I am grateful for that.

Gotta love Brisbane ....
So Saturday afternoon I was admitted to the Royal Melbourne Hospital. My room in the Bone Marrow Transplant unit has a view of the city skyline, ensuite, plenty of space for visitors and iPod dock. Penthouse ensuite apparently, a nurse told me. Breakfast included, room service, the culinary delights of Lygon Street only streets away … I have already busied myself making the room more 'homely' with a few decorations and things, since I'll be here for a while. 

Since my admission I've been feeling pretty good; I think I am just glad now that I am here and getting on with it. In the past weeks, out there in the real world, I wasn’t really thinking about it at all, I was just enjoying my freedom, and I’m pretty sure in about a week, the back-in-hospital blues will set in, but for now, it is just on with business. 

On Sunday night, I got a special visit from four members of the "Flying Dorts" cycling and crew team who informed me they have signed me up for next year's ride! 2013, here I come. Apparently there were a few sore bums and tired muscles but they all fared pretty well, and as I've said before, I'm immensely proud. $6.2 million will go a long way, and I am so confident that in the years to come we will be able to eliminate cancer once and for all.