Saturday, July 14, 2012

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. 

Thursday, July 5, 2012

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 30th 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.