Wednesday, May 15, 2013

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:

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.


  1. you're absolutely amazing. that's all.

  2. Don't know the right words Beth - just that you are one amazing, beautiful precious lady and we will continue to keep you in our thoughts and prayers. love Angie and Andrew xoxo

  3. You are a truly gifted woman! this piece of writing and your spirit is an empowerment to the human race.... I have never met you but i wish every bit of happiness, love and recovery! I am sending every inch of positivity I have your way! My thoughts are with you star of a human!! Stay strong..

    Cian :)
    (kate dortmans friend from GC not a creep that stalked your blog ha!)

  4. Don't know the right statements Beth -simply that you are one astounding, excellent valuable woman and we will press on to keep you in our musings and petitions to God. love Angie and Andrew xoxo raise money online .