Yesterday is history, tomorrow is a mystery and today is a gift

I'm going to start this post by saying I feel great today. Under the circumstances, that alone is a miracle. I have no pain, I am smiling, things are well. When I finally get around to telling you what’s been happening in the recent weeks of my life, maybe you'll be as amazed as I am about this too.

To put things into perspective; exactly a week ago, I was sitting in the room with a palliative care registrar and nurse discussing how I was going to get through the next phase of my life, which unfortunately, I am now accepting, won’t be a particularly long one. I don’t think I can ever explain exactly how grim it is to be 30 years old and referred to a palliative care team, it is confronting and something I would never, ever have dreamed would happen to me.

So it's been a while. There's going to be some history, it's going to get long, and it's going to be hard. When I last wrote I was on a waiting list for a clinical trial which, according to the doctors, was probably not going to work. The problem is, that my platelets (the cells in my blood that prevent bruising and excessive bleeding) needed to be at a certain level (150) for me to qualify, and for weeks they were hovering in the 90s. The doctors figured they were still bouncing back from my radiation therapy in February.

So, basically, once again it was a waiting game, and I'm pretty used to those. As I have a large-ish tumour pressing on my bowel, my doctors gave me a list of symptoms to look out for and to alert them straight away if they arised, and then they could apply some more radiotherapy to alleviate these potentially dangerous symptoms that could land me in hospital if left unattended.

Two months since my last scan, and I still have no symptoms. It's hard, because I just know they will come; but I am not going to spend my entire existence hanging on tenterhooks, worrying about every single change in my body. I'm just going to get on with things while I feel well. If the symptoms come, they come. But I refuse to anticipate them. The very strong dose of steroids I am on at the moment could be making a big difference as well.

Anyway, whilst there was little happening treatment-wise, there was a lot happening in other parts of my life. I did an amazing trip to the NSW South Coast over Easter to be with friends and family and it was so beautiful and peaceful and amazing. Then, it wasn't the monumental marking of the end of my stem cell journey and start of my new life that it should've been, but it was fantastic all the same: I got my Hickman's Line removed. I'd had this tube of plastic inserted into the top of my right breast for six months. It was a Godsend during my transplant in the sense that it enabled me to receive medications and get blood taken with ease without my dead veins being bothered by needles. I could tuck it away underneath my clothes and no one would know the difference. After all my Day 100 check-ups were over, however, all it presented was a reminder that I was not normal; that I couldn't swim or bathe (in Melbourne's hottest summer in years) and it was also an infection risk. So out it came. All I had to do is lie in bed, breathe in, and the nurse pulled it out of my chest, and she had to pull it hard. It didn't hurt. But wow, it's gone, and I am glad. And thus far my veins are co-operating with medical staff.

Easter in Nethercote ... bliss

Another thing is that I work for Cancer Council Victoria now, two days a week, as a media assistant in their Cancer Prevention Centre communications department. I love it. I love the routine, I love the sense of purpose, I love the people I work with and they are very flexible to my needs.

I've published two blog posts on their behalf since starting with them:

http://blogs.crikey.com.au/croakey/2013/04/11/digital-media-and-junk-food-advertising

http://www.cutyourcancerrisk.org.au/blogs/clinical.html#.UZHvHaUWwUU

I travelled to Tasmania, and I fell in love with our island state, visiting markets, eating amazing food, exploring idyllic islands, being surrounded by seals, exploring the Southern Ocean, seeing stunning landscapes. Then a few weeks later, I was on the very other side of the country, in Darwin, witnessing sunsets like no other, enjoying 350-degree heat, watching crocs jump right in front of me, swimming in rockpools and waterfalls ... another one ticked off bucket list: I have now visited every state and territory in Australia, and every capital city. And I tell you what, I love this country. I love it. There's more to tell you about Darwin, but we'll get to that. 

My cousin and I on Bruny Island, Tasmania

Another bucket list item: I popped my bridesmaid cherry. Saw an old, dear friend get married. That weekend was one for the history books; it felt like a movie (think The Hangover) at times, but an awesome experience and I am so happy for her. 

Wedding belles

So, to Darwin. I had five days booked at the Tope End with two of my awesome girlfriends. In the lead-up to this trip, I'd been getting weekly blood tests, and they were coming up a little bit weird. Platelets still low, but the most concerning thing was that my white blood cells had plummeted to pretty much rock bottom. Well, I guess that explained why my mouth was full of horrible, irritating ulcers. This was incredibly annoying because it meant I was at big risk of infection. But more pressing was the bigger issue: why are they so low? This is isn't supposed to be happening and could mean something very sinister is happening in my bone marrow. Nonetheless, the doctors knew how much this trip meant to me, and they sent me off with a contingency plan: a GSCF injection to boost my white blood cells before I left, a supply of oral antibiotics, and instructions to check into a hospital in Darwin if I had temperatures or was feeling unwell. What a pain in the ass. But the heartbreak of having to cancel my trip to Cairns last year because of a relapse was fresh in my mind, and there was no way I was cancelling this trip. So I took the red-eye to Darwin and off I went.

Everything started well. Darwin was hot, mildly humid (35 degrees every day) but it certainly wasn't unbearable. Me and the girls got out and about, loving being together and exploring NT. I kept an eye on my temperatures, and there were times they were high, and I ignored them, then they'd come down again. But after one bigger night than usual, when I'd had little sleep, I woke up and I had two high-grade temperatures: 38.4. I decided I couldn't ignore it anymore; I had to do the right thing. My friends drove me to Darwin Hospital. I can't fathom how stressful this whole experience must've been for them, but they handled it so well. 

Sunset in Darwin

I won't go into the detail of how patronising and out of touch the triage nurse in the Darwin Hospital emergency department was towards to me, but to sum it up: after I had relayed the fact I was two-time stem cell transplant patient, had no neutrophils, and the situation was quite urgent, he leaned into me and said in a low voice: "I think you might have a UTI." I stood there just looking at him, my jaw was just open in disbelief. Oh my, Mr Triage nurse, how I WISH it was just a UTI. Anyway the most important thing is that I got straight into ED with no waiting, which is what is supposed to happen - a cancer patient with a temperature is an urgent situation and can be life threatening. At least that message got through and I was called up right away. 

Blood was taken from me. I waited with bated breath for the results. "They'll be normal and I'll get out of here," I hoped and prayed, my fingers crossed for dear life. But when they finally came back, I was devastated. My white blood cells were still rock bottom at 0.8; my platelets had dropped to 70, and suddenly it hit me. The lymphoma is in the bone marrow. This dark, dark, blanket of anxiety fell over me and I said, "I think this is the end."God I can't even imagine how my friends must've been feeling at this point. I was admitted, given sleeping meds, moved to my own room in the burns/surgical unit (which was quite dark and 70s-looking, felt a bit like a jail cell really).

In the end, I spent two nights in Darwin Hospital, which I will tell you was a cultural experience. Thankfully I had the most beautiful nurses, one of which gave me a big hug, an NT-born and bred lovely woman. And you know what it wasn't THAT bad. It was probably two days of enforced rest I needed. We had to cancel a trip to Katherine Gorge which in hindsight would've been too much anyway, but my friends coped, and so did I. I'd had no temperatures whatsoever since I'd been admitted which told me that it wasn't an infection - so I threatened to self-discharge the morning of my last day in Darwin because my friends and I were going to go out and have an amazing day. The doctors, who were really lovely, let me go anyway. We had the most amazing day at Litchfield National Park, it was the perfect end to our trip. I swam in rock pools and waterfalls and just lapped up the beauty of our tropical territory. Then it was back to Darwin for dinner, a few hours sleep, and then up at the crack of the sparrows to catch a morning flight home to Melbourne. 

Last day in Darwin ... beats hospital!

I cried the whole four-hour flight back to Melbourne. I was such a mess. I collapsed in a heap of anxiety and fear. I felt helpless. I felt scared. But I tell you what, I was so happy to see my mum at the airport; I realised how much she meant to me and how much I needed her. All this time I thought I could beat this cancer, right from the very beginning, when I sat alone in a hospital emergency bed in London adn told me from day 1 I had lymphoma. Now I didn't have that anymore. I felt like all was lost, and I just didn't know how I was going to get my head around that. Darwin was a reality check.

My doctor pretty much confirmed all my fears the next day. He told me he was 99% sure the lymphoma was in my bone marrow, and after two stem cell transplants, that is very bad news indeed. He told me very directly, "I don't think we're going to beat this." That was when he referred me to palliative care. I sat there, lost in despair. I am 30 and my life is over. He talked to me about how I was going to find the balance between hope, and the realities I was facing, over the next few months, and I said, "I don't think there is hope. Now it's about finding peace."

I do believe in the power of the mind. As I headed back to the waiting room, swollen-eyed and devastated, a lady next to me who had had numerous stem cell transplants and relapses told me, "The power of the mind is mightier than the sword." These words offered little comfort to me at the time. How could I have been any more positive about my journey from the start? I just don't know how.

I guess at this time, anger was burning inside of me as well. I find myself looking at older people on trams and trains and thinking, "I will never get to that age." I envy those people sitting in their seats, with nothing else to worry about but what they're going to have for dinner tonight or whether they can be bothered to go to yoga class tonight. Oh how I envy and long for that kind of normality again, a normality that seems out of reach for me at the moment. And I still have so much to give this world. When I think of my own family and friends at my own funeral, I choke up so much I can't even bear it. I have always accepted my situation and understood that I am not the only person to go through this. But now I find myself asking "Why? What have I done to deserve this really?" But there were never any promises that life would be easy. For many it's full of hardship and there's no making sense of that. This lymphoma was always out to get me.

I recall a story from years ago, when I was with a group of friends and they probably don't even remember this, but I do. It was back when I was living in NSW, and I told them I had a feeling that I was going to die young. They were understandably creeped out by this comment and questioned me on my reasoning for this. "I don't know," I said. "I just feel it; and when I look at the way I live my life, I feel like I am trying to cram everything I can into every moment." I was trying to fit in so much. Living hard and fast, that's what I do. Maybe it was just a stupid thing to say. But I am also very strong-minded and maybe I was equipped with that to get through this whole ordeal too. Maybe there are reasons and destinies, I don't know. I can't say I have had a hard life but I most definitely have had my share of drama; my life has been anything but sedate. I am surprised that I haven't just disintegrated into a pool of depression by now. I guess if anyone has taken anything life-changhing from my journey than I have served a purpose. I have also realised what an absolutely amazing, loving, supporting family and group of friends I have around me; and that's also something. I could've gone through years and years of life never fully knowing that, deeply. If love was currency, all the money in the world couldn't repay what my family has done for me.

Whoa, heavy, hey. Let's move on. So what's next for me?

Options category no. 1. Chances of happening: extremely/100% likely

Radiotherapy. This is for the tumours in my abdomen. Surprisingly since my last scan 2 months ago, I have not had any symptoms, as I mentioned before. I saw my radiotherapy oncologist last week and I think he was surprised at how well I was doing. He rattled off a list of symptoms that were all reported in the negative, had a feel of my abdomen and then decided that rushing into radiation was not the right move for me at that present moment. The radiation would mess with my blood counts and I'd need infusions, and that is something I need to avoid. He said if I report symptoms immediately they can get me in for radiation quickly to turn things around. I got a CT scan done but I have heard nothing about the results. Radiotherapy is in my future, I just don't know when. It's not going to get rid of the lymphoma. It's just going to control the disease so I don't have complications. The only thing is that there is only so much radiotherapy my organs can be exposed to.

Alternative therapies/healing. I’m looking into these but I’m keeping an open mind as you can understand. These are more to help me prolong my life and help me heal, and mentally cope with the situation I face in front of me. I still believe anything can happen. Every day I wake up and I say to myself “I have a life to live.” Some days I put on my Hope necklace and Wonder Woman T-shirt I bought for $2 from Ballarat and pretend it’s some kind of armour. Sometimes I look at my determined eyes in the mirror and say, “I’m not going to let this happen to me”. I don’t know if I truly believe it or if it will work. I’ve looked into herbal treatments, therapies, foods, etc … I’m not writing anything off. I have always been the rational-minded person, putting my faith in science and facts over anecdotal evidence and unproven theories and ideas. But I can feel my mind changing about this. Anything really can happen. I have booked myself into an Ian Gawler cancer retreat in the Dandenongs for June, and I am looking forward to this. Meditation, organic food, healing, all in beautiful surrounds with others facing the same journey.

Options category two. Chances of happening: hmmm, pretty unlikely

Clinical trial. This is only if my blood counts magically come up, and well, it doesn't look like that will happen. That said I haven't had a blood test for a while so who knows what's happening. About a week after Darwin my platelets went up to 105 but dropped back to 70 the following week, and my white blood cells went through the roof because of the GSCF injection I had received the previous week. At least the injection had worked; the one I had before Darwin it had failed. My blood counts are my biggest worry.

The trial also comes with its risks, and it would tie me to the hospital somewhat. It's not a great option anyway. In the coming weeks I will see my original oncologist at Peter Mac and discuss every single option I face and the risks, more for mental closure than anything.

Chemo. The doctors certainly aren't pushing this, and it is not a recommendation, and maybe not even a possibility. Chemo is not going to cure me but I wondered if maybe it shrunk the tumours down enough I could then receive radiotherapy. Radiotherapy is the ONLY thing that has had any success. The doctors say chemo will only land me in hospital, give me a poor quality of life, and is likely to achieve nothing. I don’t want chemo. But I don’t want to give up either. I feel like I’ve tolerated everything so well that I could keep going, but maybe I underestimate exactly just what my body has been through.

Options category three: Chances of happening: zero or maybe 0.00000001%

Extraterrestrial intervention. I get abducted by aliens and taken to a planet where they have cancer cures. You just never know, right?

Yeah OK maybe I shouldn't joke about this but if "you're not laughing, you're crying". 

Anyway I will conclude with a nice trip I had to Gippsland. I got to spend a wonderful day with my mother, who has been my absolute rock throughout the hardest 18 months of my life. I wish more than anything that things could have been easier, but I have felt and received love and support I may never have realised in a lifetime. I am lucky in that respect. I was never a “mummy’s girl” at any time in my life and there have been many times that my mum and I, such different people, haven’t seen eye to eye. But when I think about my mum now I am just filled with love and gratitude and I feel so, so blessed to have her. I also got to spend time with another amazing woman and role model in my life, my Oma, who is 88 and still so sharp, and generous and amazing. She is helping me fulfil my goal of going to this cancer retreat as have a group of my mother's colleagues who held a fundraiser for me last year and for that I am so grateful and touched. During my Gippsland jaunt, I also went to church. I don't know if I could call it a spiritual ephinany as such, but I was amazed when the sermon that was delivered, by my father's friend, seem to speak right to me. It was about finding hope when you find yourself in a situation of complete bleakness, despair and helplessness. I've always believed that the universe is random and while I never completely turned my back on spirituality, I certainly do not follow one God nor believe he will heal me. I used to believe things “happened for a reason” but that was back when nothing really that bad happened to me. It's hard to find a reason why this is happening to me, but if I can help change someone's life from my experience maybe that is it. 

So I am digging into that little reserve of hope. I do believe in the power of the mind. Doctors can be wrong. Anything can happen. I need to look past the bleakness and I need to keep getting on with this and doing everything I can to prolong my life and opening my eyes to other possibilities. Medical science has failed me, but maybe that’s not all there is. 

I also caught up with some old, dear friends, I received beautiful gifts from people I hadn't met but have read my blog (thank you, you know who you are), and then I found that some of my parents' neighbours are holding a fundraiser for me and the Peter Mac Ride to Conquer Cancer bike ride this June. My trip to Gippsland was a wonderful and cleansing experience after such a bleak week. 

Oh yeah, and I'm blonde now. Because why not. And next week I turn 31, and this weekend I plan to party the only way I know how.

Cue blonde jokes

"Where there's life, there's hope." It's not over yet.

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 5^th 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.