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

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

Until my PET scan results came back.

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

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

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

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

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

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

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

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

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

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

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

Insert every expletive you can think of here

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

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

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

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

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

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

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

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

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

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

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

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

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