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 31^st 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. 

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

From diagnosis to now: what a journey, huh?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love this quote - thanks Glenn

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

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

Pedalling a good cause

Last time I wrote, I had good news. I’d had one round of chemotherapy, and the CT scan that followed had shown that despite the slim odds of this chemotherapy succeeding, the lymphoma had shrunk. I never saw the scans, so I really didn’t know just how significant the response had been. But the doctors were happy, so I was happy too. And this was the first good thing that had happened to me for a while, so I revelled in it.

So I went into round 2 of the chemo and once again handled it pretty well – I battled some fatigue and low blood counts, but overall I held up OK. After round 2, I got another PET scan, my seventh so far (I have had so much radioactive tracer injected into me I am surprised I am not glowing right now). I think it is pretty obvious to anyone who has been following my blog how much I hate PET scans, not just because I usually have to get up early and fast for them, which makes me hungry and grumpy, but also because they often bring anxiety, and sometimes heartbreak, too.

I had my PET on a Wednesday. On Friday, I still didn’t know the result. On this day, I was sitting in pathology at Peter Mac, waiting to get a blood test as part of my weekly routine, and I bumped into the lymphoma nurse. “Did you get your PET scan results?” she asked me. “No, I haven’t heard anything, yet,” I replied. “Well, aren’t I glad I bumped into you then,” she said. “You had a complete response.”

It took me a minute to process this. In medical terms, a “complete response” when talking about a PET means there is no cancer showing on the scan. I wasn’t expecting this at all. I was hoping it would have shrunk, but I wasn’t expecting the scan to come back completely clear.

Now, of course this does not mean I have no cancer in my body. As I later discussed with the head of the transplant team the following week, there is “no doubt” (his words) that there are still microscopic cancer cells floating around my body. They are just not big enough for the scanner to pick up. But this is the best result I could’ve hoped for. And to be honest with you, a few months ago, I had serious doubts about whether I would ever have a clear PET scan again. I think my doctors had serious doubts too, if the truth be known. After discussing the result, one of the doctors from the transplant team came to me and shook my hand and said, “I am very, very happy to see you again.”

After my negative PET scan, I managed to fit in a long weekend to the Grampians, where I spent time at my cousin’s amazing house at Hall’s Gap. A wonderful weekend with wonderful people - and the steep walks were all worth it!

So now, it is hoped that the allo-stem cell transplant will eliminate those microscopic cells, those cells that the chemotherapy just can’t seem to eradicate. I have finally reached the final frontier, my only and last chance at a cure. For a while the allograft just kept slipping so far away that it started becoming some kind of elusive dream, I felt like I was never going to get there. But I am there now, and suddenly I am a bit nervous. I’ve been through a stem cell transplant before, but this one is far riskier and far scarier, and I really don’t want to go through it all again. But I have to.

There are still no guarantees that the allograft will work. In fact, according to medical research, the chances of it not working are greater than the chances of it working. But right now I refuse to even think about that possible outcome, I just can’t. I know how dangerous it is to get ahead of yourself in this game. I have to always bring myself back to now – I will cross bridges once I get to them. Right now, hope is keeping me going, and even if it ends in disappointment, it is better than having no hope.

Today I got a phone call from the transplant team. A bed has become available for me in the third week of October, the exact date to be confirmed. It is important for me to go quickly into this phase of treatment in case the lymphoma decides to go crazy again, like it did back in June/July. So I have three weeks 'till I face this big, hopefully final, fight.

Of course it shouldn’t matter in the scheme of things, but of course it still really does bother me that this means I won’t be going to Harvest Festival to see my favourite band, that I will miss the Coldplay concert I intended to attend with my sister (yes, I know it is totally uncool to like Coldplay but I don’t care what you think), that I will miss Spring Racing Carnival and a whole bunch of other stuff. But once again I have to look at the bigger picture. On November 11, it will be a year since my diagnosis and I will most likely be in hospital – how fitting that things should come full circle like that. But a year ago I was just beginning my journey, and hopefully this time around I will be finishing it. It’s so hard to believe that this cancer fight has taken up almost a whole year of my life. I can’t even remember what ‘normality’ was, and going back to it seems a long, long way away.

But as well as my stem cell transplant, there will be another big, massive event in October which will no doubt also be a challenge for those involved: the Peter Mac Ride to Conquer Cancer.

This is obviously an event close to my heart – Peter Mac is like my second home. The doctors, nurses, support staff, everybody in that place has been so amazing and made my journey that little bit easier. I feel so lucky to live in a country where these facilities are available. Peter Mac also carries out important research – just recently they had a world-first breakthrough in the fight against leukaemia and lymphoma. What I also like about supporting Peter Mac is that the money goes towards all cancers – not just one specific kind. It breaks my heart that people diagnosed with rarer diseases such as brain cancer and pancreatic cancer face a 5% chance of survival due to lack of funds and research. Once the funding is allocated, it can make such a difference: for example, 15 years ago, leukaemia killed 90% of patients, now that figure has turned on its head with a survival rate of 90%.

My sisters, brother, dad, cousins and my uncle have bravely taken on this monumental task of riding 200 kilometres in two days to raise money for this cause. If they don’t raise their fundraising targets this month, they won’t ride.

Here is the link to my family’s team – called the ‘Flying Dorts’. Listed in the members you will see my sisters Jacqui and Megan, my brother Sam, my uncle Mick and my cousin Kate. You can donate online, and it doesn’t matter how much, every bit counts.

http://ml12.conquercancer.org.au/site/TR/Events/Melbourne2012?pg=team&fr_id=1060&team_id=8005

There are also several events to attend: my cousin has organised a Grease movie night fundraising event in St Kilda, all proceeds going to Peter Mac:

https://www.facebook.com/events/153856321422391

For Gippslanders, my sis has also organized a high tea fundraiser in Traralgon:

https://www.facebook.com/events/463420987031721/

My brother is also playing a fundraising gig at the Basement Bar in Bendigo on October 16. 

So October brings its share of tough challenges, and like those cyclists who will take to the roads of the Yarra Valley and ride a ridiculous distance, I can’t wait to get to the other side and say, ‘I made it.'

Your heart is a weapon the size of a fist. Keep fighting. Keep loving

Sorry I've neglected you lately, blog, but I thought I'd hold out until I got some good news. I don't much like writing about bad news. I don't like receiving it, and I definitely don't like passing it on. Just recently, it seems the universe decided that I deserved a break, and God knows I needed it. 

About three or four weeks ago, I was sitting in my oncologist's office, and I was crying. I had just received news that the last round of chemo I had undergone, Hyper-CVAD, had not shrunk the lymphoma, and my treatment plan had hit a massive speed bump. As I reached for the tissues, the oncologist said, "I think we'll all be reaching for those by the end of this session." I guess I am so caught up in my own journey that I forget what an emotional toll these things also take on the medical practitioners involved ... oncologists have to face the fact that many of their patients will die, and to have to look them in the eye and make them aware of that fact must be up there with one of the hardest jobs in the world. 

My oncologist told me that the mission was the same: we were still seeking a cure, but our chances of getting there had taken a big hit. 

The reality is: I have a relapsed lymphoma which is growing at an alarming rate, and we are running out of weapons to stop it. And when you're fighting a war, you use your strongest weapons upfront. So we've tried the R-CHOP, the high-dose chemotherapy, the stem cell transplant, all those things that have proven to have high success rates, but none of them could even put a dent in my lymphoma. 

But there were options left. One option was a chemotherapy regime I'd never had before (I can never remember its name, but I think it's called "Gem-Vin"). Gem-Vin had a 30% of shrinking my cancer (to put it into perspective, R-CHOP, my first line of treatment, had a 90% success rate). But as I said to my oncologist, statistics mean nothing to me anymore, and they honestly don't. Things are either going to work, or they're not. All along the way, I have fallen into the small percentages: the 10 per cents, 5 per cents, 15 per cents ... so you know what - 30 per cent actually sounds like my kind of odds, bring it on!

The other option presented to me was a clinical trial. This was a completely unknown quantity: drugs that had only been tested on a very small sample of people. It was too early to tell how effective they were; for instance, the drug worked for one person but not another; does that eventually turn into 50% or 1 in 100? It is a complete medical leap of faith.

So I decided 30% was better than nothing, and the Gem-Vin would be my next line of attack. We'd pulled out the tanks, bazookas and machine guns but they hadn't done the job, and now we were stuck with the clapped out rusty old hunting rifle from the back shed, and bullets are in short supply. 

But sometimes that's all you need. 

Gem-Vin was pretty easy to tolerate. There were very few side effects and I got through my low period with few problems. So I did what any cancer patient would do: I went snowboarding! My sister booked us an amazing apartment at Falls Creek and a group of us piled into our cars and spent two nights on the slopes. I managed to surprise even myself, going out every day and spending the whole day boarding ... it's nice to know I can still do these things after eight chemo treatments and a stem cell transplant. I would collapse in a heap at the end of the day, but I did all right. Once again I felt it was something I needed to do, revisit my 'normal' life, enjoy a taste of my former freedom. It was three days during which the only medical-related thing I had to worry about was how to keep my PICC line out of the jacuzzi. It was three days of pure escapism and it was great.  

Some of the 'Falls Crew 2012'

Sunset from our balcony

When I got back to Melbourne, it was a snap back to reality. I was booked in for a CT scan to see how things were progressing with the chemo. Pre-scan anxiety wasn't such an issue this time around, in many ways I think I have become numb to it. It is a very difficult thing to stop yourself from having expectations and hope in a bid to avoid heartbreak; I think it is human nature to feel these things. But for me, I saw it as simply going through the motions, but I would be lying if I said I didn't hope so hard it hurt as I passed through that whirring donut once again.

The next morning I was booked in for chemo. I went to the fifth floor, and sat in the chair in front of the window overlooking Albert Street as they fed me the chemotherapy through the drip. I hadn't received news on the CT scan yet but I had missed two calls that morning ... I recalled that one of my friends, in a spooky sixth-sense way, had told me she "had a good feeling about this chemo" several weeks before. I hoped to God she was right.

And she was! A young haematology registrar was the first to break the news - the lymphoma had responded to the chemotherapy, and there had been shrinkage across all sites in my body, which was a really positive sign. My oncologist was very happy with the response. It was hoped that after one more round of Gem-Vin, I could finally get a shot at my only chance of a cure: the allograft. 

So right now I am on day 7 of my second round of Gem-Vin. I have a PET scan in a week or so which will determine whether the allograft can go ahead. Things are falling into place, but as I know too well, nothing is certain, and I still have a long way to go. All I know is that it feels so good to finally, finally have some good news after a litany of worst-case scenarios. The result also gives me hope ... if this chemotherapy had a 30% chance of working, and it worked, surely the allograft can work too. As long as I keep falling into those small percentiles, I know I can do it. 

Road trips and road blocks

Q: What did the skin say to the syringe?  

A: Don’t be such a prick.

These are things I have to resort to to entertain myself in hospital; making up lame jokes like the one written above. They can also help lighten the mood when things get – much like the weather at the moment – bleak.

Because there hasn’t been that much to laugh about lately, really. On Tuesday, I had PET scan no.6. Since I am an old hat at PET scans, the whole procedure is pretty much routine for me now: arrive to hospital starving hungry, tired and grumpy (after 6-12 hours of fasting), fill out a form, get called into a room, change into hideous hospital-provided pants (because the metal zipper of my jeans will interfere with the scan), get injected with radioactive liquid, lie in a dark room for an hour, lie on the PET scanner bed and get passed through the whirring donut. I have grown to hate PET scans and they are usually preceded by two days of major pre-scan anxiety, which means I don't sleep well the night before and am generally a grumpy, cantankerous person for a day or two and horrible company. 

This time around I had pre-scan anxiety like no other. I literally had two hours sleep the night before the PET. It’s really no wonder, since only one of six scans have given me anything to celebrate. PET = pain, in my book. But additionally, I had a very bad feeling because of the signs my body had been giving me. I didn’t get many side effects from the chemo, and in my third week, when my blood counts were coming up and I should’ve felt better, I felt very, very tired, my appetite was next to nothing and I had the occasional night sweat – at times I felt worse than I had in the previous two weeks of my chemo. Which just gave me an inkling that the cancer was still hanging around; I felt a lot of these 'old' symptoms were coming back.

And it really shows how in tune with my body I actually am, that my hunch was right. My results weren’t great. Basically, the cancer has barely changed. It hasn’t really grown, but it hasn’t shrunk either. "If you're a half-glass-full kind of person" as my haematologist would say, it has halted the lymphoma’s progression, which is something, as pre-chemo, it was growing mega-fast.

But what it means is that I can’t have the stem cell transplant on September 3 as planned, because there is still too much cancer for it be to curative. Before the SCT can go ahead I need more chemo (just to add to the bucketloads I have already had) and this time we are heading into unknown territory. They’re going to have to try a chemo that hasn’t seen my lymphoma before - which could be a good or bad thing. Good because my body hasn’t built a resistance like it clearly has to the Hyper-CVAD, bad because it might not work. But the most annoying thing in all this is that they will have to push back the stem cell transplant even further – to something like November.

Just another obstacle, another change of plans, and my chance for a cure just pushed even further away. I really, really needed some good news this week – all of my last consultations with doctors have been bad news, and not just bad – worst-case scenario a lot of the time. Oh crap - your cancer’s come back after 6 cycles of chemo and a stem cell transplant, oh shit, now your cancer is growing at an unprecedented rate and you need more chemo, oh !@#%, the chemo didn’t really do the job, now we have to switch to a different poison that might not work. The fact that I want to scream right now would not come as a surprise.

And … depression. Oh boy, do I understand depression so much more than I ever did. I feel for anyone who has to go through it, it is a dark, dark place to be. I was so optimistic when I began this journey, and I honestly believed I would beat this disease. Death didn’t even register as an option. Now things are different, and dark clouds of doubt hover over me every day, because as hopeful as I would like to be, I also need to be prepared for the fact that things won’t work out. The result is me trying to hold myself in some kind of emotional ‘limbo’ where I don’t get my hopes up but I don’t slip into the depths of despair either. It is very, very difficult. 

The last round of chemo was a busy cycle, and mostly due to Matt being here, though he’s gone home now. Poor Matt– having been here when I got my bad PET scan results, he was dragged onto my horrible rollercoaster of hospital visits, family dramas, last-minute plan changes, antibiotics and all the things that have become a normality to me. Though, even I have had a three-month break so it’s been pretty hard for me too. The timing couldn’t have been more wrong, but it wasn’t like I could tell my lymphoma to take a week off. It was a difficult time but we also managed to make the best of a shit situation, and if Matt had no grasp of what I’ve been through in the last six months, he certainly does now!

But … all these things aside, Matt and I got to do some pretty cool stuff, like a day trip to Wilson’s Promontory (where we saw kangaroos! And emus! And a wombat) and Tarra Bulga National Park which is totally cool and virtually in my backyard, and a lot of other things, like some absolutely breathtaking sunsets … I’ve seen a lot of sunsets all over the world and have decided that Australia has the most dramatic, especially in winter. (And we got to travel in an XR6, because one positive thing about having cancer is that your parents let you take their sportscar out, when they would never do that otherwise. Win. ) I drove four hours on day 7 of my chemo - clearly I couldn’t do any of the arduous walks - but it’s nice to know that cancer doesn’t completely control my life, and sometimes I do get time to smell the roses.

Wilson's Prom: one of my favourite places

It was so nice to get out of town, to breathe in the sea air, feel the sand between my toes, delve deep into the wet mossy rainforest … we really do live in such a beautiful, fantastic country.

Wednesday it was back to Peter Mac and by Thursday I was neutropenic. At this time I noticed a little red spot on my hand, and I was instantly wary, as I’d had this type of skin infection show up during chemotherapy before. What do you know, by Saturday the redness around it had spread and there was clearly an infection going on. The doctor gave me oral antibiotics so I did what anyone with neutropenia would do – went to the footy!

That night I was supposed to have my wig party which I cancelled because I was neutropenic (sorry everyone. Will reschedule, I promise). Instead I went out with a small group of my closest friends and relatives, and you know when you have one of those awesomely fun nights, which is fun for no other reason than your ridiculously awesome company? This was one of those nights. The next day my sides still hurt from laughing, especially at the sight of Sam in my blonde wig. It was just a really lovely night and I feel so lucky that I have so many people in my life who can put a smile on my face, at a time when I don’t have that much to smile about.

Oh dear. Who are these people? Please note we were rejected from
Section 8 which apparently has a 'no-wig policy'

The next day my hand was swelling up to the point it almost had its own postcode, so back to the hospital I went. This is when they told me I had to be admitted to hospital. I cried. Seriously, enough is enough, why do I have to have this swollen, sore hand on top of everything? I went into hospital on Sunday, and Matt was leaving Wednesday. The doctors said I would need IV antibiotics for a few days and I couldn’t bear the thought of still being in hospital when he left. One of the nurses knew how badly I wanted to get out and convinced them to discharge me, with “pumps” of antibiotics that I could hook up to my PICC line myself and carry around (I tied mine to my belt hooks). This meant I was out of hospital, and I was so happy. So now, I can give myself injections, I can give myself IV antibiotics and if you asked me to dress a PICC line I could give you specific step-by-step instructions and even show you how, and I bet I’d do it perfectly. Surely I should have some medical qualification by now (I told mum that I should have a nurse qualification soon, which was met with a ‘whatever’). 

My antibiotics on the Great Ocean Road

So Matt and I took this window of opportunity. At about 1pm we picked up a hire car from Melbourne, were ‘lunching’ in Lorne by 4.30, indulged in some unexpected whale spotting, got a speeding fine, nearly hit a roo, stayed in a gorgeous cottage with Jacuzzi in Port Campbell, woke before sunrise to see Loch Ard Gorge and 12 Apostles in the golden morning light, then made it to the airport around midday to get Matt on his plane to London. It was a lightning trip, but man it was worth it. However, at the end, we faced another difficult goodbye as I left Matt at “the door” of International Departures. You know, that door at Melbourne Airport that people who are flying overseas disappear behind, and sometimes you don’t know when you’re going to see that person again. This was the case for Matt and I, but I am so thankful I got to spend this time with him, I just wish circumstances had been better.

The moral of the story is that when things are doom and gloom, there are still so many blessings in life. Things are definitely starting to take their toll, it has been 10 months since I was diagnosed, and I feel that this has been the most testing time of my whole journey, by far. But if I can get through this, I will feel like I can achieve anything. And even though, let's face it, my life is pretty shit, I am still able to laugh, share and enjoy this world that I live in. Because when I am unable to do that, the cancer has won already. While I am still breathing I just have to enjoy each moment I've got. 

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

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

Until my PET scan results came back.

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

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

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

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

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

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

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

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

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

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

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

C'est la vie

So life continues on, as it has to. On Monday, June 9, I will get another PET scan, my fifth all together (so far the third one is the only one that has brought any good news). The results of this PET will play a big part in what the next step will be, but as it stands, I will be undergoing my allograft on July 27. That is, I will be receiving my sister’s stem cells that day, a day which they refer to as “day zero”, as it marks the beginning of my stem cell journey and enables my progress to be mapped from there (sigh, back to zero again). The procedure will take place at the Royal Melbourne Hospital, not Peter Mac, which in a way I am grateful for, because even though it’s still a hospital, at least it’s a change of scenery (although I haven’t sampled the food yet).

There’s a number of possible outcomes from the PET. That the cancer has barely grown or grown a little bit, that it has grown significantly, or that it has shrunk. The last two outcomes are very unlikely, so the doctors are assuming that it will only have grown a bit, if at all. If this is the case, then the transplant will go ahead as planned in late July. I’m now approaching three months since my autograft, which is the minimum amount of time my body needs (to recover from the first transplant) before it can go into the allograft.

It is the plan that my allograft will be followed by some radiotherapy. The possibility of having radiotherapy before the transplant has been ruled out. This is because the radiotherapy dose would have to be reduced in order to protect my organs going into the transplant, and if it is reduced, it will make little impact. So pointless, really.

I’m dealing with my situation a lot better than when I first found out about the relapse, although I do find myself tearing up unexpectedly on odd occasions. When I first found out I was so shocked and saddened I didn’t know how I was going to cope. But as I said before, life has to go on, and it has, and I’ve been enjoying it. If I was watching someone else go through what I am going through, I would probably wonder how they have not collapsed in a heap. But it's totally different when it happens to you. If anything, it makes living more important.

And of course, there are other things going on in my life that are completely non-cancer-related that are also worth reporting. I’ve had several weeks away from the hospital now, and I took the break as a good opportunity to do what I love best: travel. So I went and visited the one state in Australia I had never been to: Western Australia. It was an epic, week-long tour of South-Western Australia, and I can now say I am in love and would happily move there for a year or two. I have never felt so relaxed in a capital city as I did in Perth, and I do like the idea of being isolated for a little while. Melbourne has always been my favourite, but having all my treatment here has taken away the rose-coloured glasses, for now.

Road tripping in WA

Cairns is the next on the list: I have booked a trip there for me and the amazing Matt who is flying all the way from the UK. I am beyond excited about this trip and the weeks ahead; it is so nice to have something to look forward to, rather than dread. At the moment I feel pretty good; my energy levels aren’t what they used to be and any form of exercise more strenuous than walking will have my legs dragging and limbs aching for days, but seven days relaxing by the beach or pool, snorkelling, and staying overnight amongst the Daintree Rainforest treetops doesn’t sound too strenuous to me.

So while I'm doing things I've never done before (or never really planned to do, let's be honest), I can also tick 'Climbing a 75-metre Death Tree' off my bucket list (though quietly, I think it was taller than that. Maybe it's grown since they wrote that sign). While I was in WA, I climbed the Bicentennial Tree near Pemberton in the south-west. The ladder I climbed was made up of thick steel rods, spiraling up the tree to a platform at the very top (yes, with absolutely no safety net or harness whatsoever), which places you at the top of the forest, with the bushy canopy below you stretching for miles. It was raining when I did this, meaning the rods were slippery and it was very precarious. I also realized how deconditioned I was, as I started to grow very tired and was well out of breath by the time I reached the top. But getting to the top was less than half the battle; getting down proved much more terrifying. Every step down I was confronted with the dizzying heights I had reached and that a simple slip could be costly. But even though my hands were ice blocks and my legs were like jelly, that feeling of my feet hitting the ground was superb. I felt invincible.

"The Death Tree"

So now I have another slippery and dangerous climb ahead of me - the allograft. There’s the risk that I could die from climbing it, but the risk of not climbing it is far greater. Anything could happen along the way, but just like The Death Tree, I just have to focus on one rung at a time. My aim is to climb to the top, and make it to the bottom, and once again feel that invincible feeling, but on a whole new level. It’s a bit of a cheesy metaphor really, but there is no better feeling than confronting and conquering a fear. 
So next week I’m going to spend some time in the sunshine of Northern Queensland. I am also going to celebrate my 30^th birthday on my return, which actually happened two months ago but I wasn’t in the best shape back then. It will be an opportunity to spend time with friends and family who I have found it so hard to find time for amid the chaos of appointments and tests and travels. I certainly have had some pretty rotten luck recently, but it’s nice to know that not everything is doom and gloom. I’m just hoping and praying that Lady Luck comes to my aid right when I need her the most.