Tuesday, July 2, 2013
Moxie: Who doesn't love surprises - with colours and a vi...
Moxie: Who doesn't love surprises - with colours and a vi...: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...
Moxie: Who doesn't love surprises - with colours and a vi...
Moxie: Who doesn't love surprises - with colours and a vi...: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...
Moxie: Who doesn't love surprises - with colours and a vi...
Moxie: Who doesn't love surprises - with colours and a vi...: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...
Moxie: Who doesn't love surprises - with colours and a vi...
Moxie: Who doesn't love surprises - with colours and a vi...: This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever. So I am now 31. I a...
Who doesn't love surprises - with colours and a view?
This is a very old post - sorry about that guys. But I do need to tell you about my best best birthdy ever.
So I am now 31. I am officially "in" my 30s. And in spite of everything that's going on, I'm going to say 30 is a great age. I wouldn't go back to my 20s for the world.
So I am now 31. I am officially "in" my 30s. And in spite of everything that's going on, I'm going to say 30 is a great age. I wouldn't go back to my 20s for the world.
And my birthday. What a wonderful, endless adventure of loved ones, happy faces, long overdue catch-ups, laughs, craziness, good foo
d and amazing company and SURPRISES. Oh my, so many surprises.
d and amazing company and SURPRISES. Oh my, so many surprises.
Let me just talk you through the wonderful little surprise bundle that started a few days before my actual birthday.
1. We surprised my friend Fleur who had come down from Sydney (also celebrating her birthday just days before me) by having our friend Michelle, who has been in South Africa for months, fly from Perth and surprise her at the apartment door on the day of my party. There were tears.
2. I was surprised by a make-up artist to do up our pretty little faces for the party at the apartment - a present from older sister Jacq
3. I was surprised by the arrival of two good friends Cam and Nicola from NSW to my party later that night
4. I got three nights in a penthouse suite overlooking the Melbourne bayside - a surprise from three of my nearest and dearest awesome friends
5. My cousin flew down from London for a week and she showed up at my birthday brunch. Amazing ...
As some of you may know, for my birthday I decided to hire an Southbank apartment and just have
people come over for drinks and tunes (though we didn't really have tunes, the sounds of voices drowned that out). We checked in at about 3, the surprises begin, then the people start rolling in ... and rolling in.
I think the most people in the apartment at one time would have been around
30-40 and well over 80 would have come through throughout the evening and night overall. It was
brilliant, but unfortunately with a crammed apartment comes noise and we had a
million noise complaints until it got to the point where they refused to let anyone else up, at about 10-11.
So out we went, to a really bad pub in a shopping centre on Southbank for a
while because security were on our backs, but it was OK because there was good company and drinks flowing. The end result was that it was a great night, and I thank all the people that showed up and made it such an awesome night.
The next day we all headed to
Ringwood for my friend Fleur’s birthday party. It was a beautiful, sunny day with a crispness in the air,
also celebrated with old uni friends and cake, children running around, Just
Dance, fun times in a relaxing setting … another great day.
That night I was just expecting to
relax at the apartment for the night, but when my girlfriends arrived to pick
up their bags, we realized we were hungry, and we
headed out on a mission to get pizza at about 10 at night. I was thinking we
were going just around the corner, but the girls were fixated on a pizza place
a friend had recommended. When we drove past Crown Casino, I wondered why were venturing so far for pizza at this time of night; it all seemed a little excessive, but I
just went along for the ride. Then all of a sudden, we were driving into a multi-level car park. “Um, why
are we in a car park? This must be some pizza place,” I was thinking, still
just blindly going along for the ride. It wasn’t until we actually got into an
elevator, and the girls pressed level no.40, and we headed up that I started to
think this was all really strange. We walked into a white hallway, the girls
pressed in a code, and as they
opened the door, there was an amazing penthouse suite, with the twinkling
lights of Melbourne stretched before me. “We’ve booked a penthouse suite for
three nights!!” the girls all laughed, and I swear my jaw hit the floor. I was
in a daze. “Is this even real?” The views were just breathtaking … we had panoramic
views from St Kilda and beyond across to the Westgate Bridge/Williamstown. I
couldn’t believe it. What an amazing, awesome surprise. (I was still hungry and
wanted pizza though, so we did go get that).
So it was a fantastic few days of
photos, watching movies, amazing food, jacuzzis, just awesome times with the
girls. The beds were like sleeping on giant marshmallows. It was luxury and we
lapped it up. I still had the apartment on my actual birthday, which was also
awesome. I had a beautiful brunch with my family and friends, and was surprised
to find my cousin Jemma, who has been in London for 14 months, sitting at the
table! There was also a send-off that day, as my brother headed off to
South Africa for three weeks. He gave me a bunch of 31 balloons which attracted a lot of stares.
It was a beautiful sunny day in
Melbourne, so we spent some time wandering, riding ferries, having coffee, then
it was back to the apartment for delicious Vietnamese and some game playing.
Good times.
I loved every minute if my birthday
and I am so thankful for it all. But every now and then, I felt some underlying
anxiety creeping back. Maybe it was seeing so many people in my life talking
about their futures and lives and me wishing that realistically, I could too.
The big question about whether it was my last birthday. I’d also been
experiencing a symptom over the last few weeks that had been worrying me a lot;
white lights had appeared in my vision, making it hard to read, write and focus
on things, and also a numbness in my forehead in the mornings. I’d had a lumbar
puncture (where fluid is taken from my spine and tested, and chemotherapy is
put in) but it had come up with no conclusive results of what it might be, as
my doctor thought it was an infection of the optic nerve. Anyway, I guess the
vision thing has really scared me. And changes in my body, like my very skinny weak legswhich is so unusual for me. I don’t even feel like myself. I
feel like my body is failing me, that things are deteriatiIng and things are
slipping away. I feel fatigued, like I can’t do little things, when I felt that
months ago I was building strength. I spent a lot of time looking out at that
cityscape at night or morning just wanting to hang onto it, praying to anyone
out there, to help my body get through this.
After four glorious days of beauty, I
went to work. I was distracted and disengaged. I decided that maybe it was time
to give up this job. I need to focus on my health 100% at the moment. Also my
sight issues are making it really difficult. I think I just need some time to
sort myself out.
So when I finally got back to my
apartment that night, I finally got the time to go through all the wonderful
cards, letters, poems, gifts and even text messages (I’d barely touched my
phone for days) and suddenly instead of this despair I’d been feeling, I was
filled with resolve. body what to do, and it’s
going to do it, or else. I am not going to let this disease win, I need to find
control of it. It’s a philosophy that fits in perfectly with the views and
experiences of Ian Gawler, whose retreat I am going to in a week or so. If
you’ve never heard of him, Google him, he has such an amazing story and his
book You Can Conquer Cancer is
changing my life.
So I spent the weekend following my
birthday with wonderful family and friends. It was a great time. I even had a
few drinks and woke up feeling great. Sunday had brunch in the city and then
enjoyed a spontaneous football match (my first of the year) at a very sparsely populated
Melbourne Football Ground (Hawks v Suns – was almost the upset of the year but
alas no). Then dinner in Kew. It was a great weekend. I turned down tickets to Kraftwerk
in Sydney, even though I’m a massive fan, but I’m glad I did. Spending time
with my dearest and closest, especially those who had traveled from afar, was
so much better.
On Tuesday I saw my doctor and we
spoke about my sight issues. The next step will be to get an eye test and MRI scan
to see what is going on. What it might be is all speculation at the moment, but
it is worrying me. It’s just always there, bothering me, and I don’t know where
it’s coming from, what it means, whether it’s permanent … but it’s just
something I have to deal with right now. We made arrangements that I would get
the MRI when I returned from the Ian Gawler retreat in mid June. Still no
answers but at least there is a plan. I spent that day out and about doing
quite a bit of walking.
I decided to leave my Cancer Council
job to concentrate 100% on my health and get things sorted out. My last day was
yesterday, and that was a hard day. For a number of reasons. I found it really
hard going walking to work, which is only a 15-20 stroll. My legs were heavy. Maybe
it was tiredness from the day before, maybe it was something else. The forehead
numbness was bothering me. I couldn’t concentrate at work and at times I felt
very dizzy. Then I had to say goodbye to everyone, and that was hard. Such
wonderful people at that place and a piece of normality in my life that I must
put away for now. Maybe it was the stress and everything of that day that fell
on top of me and as I walked home I couldn’t stop crying, my vision felt so blurred,
and I felt so unsure about everything. I wondered if going away for 10 days to
the retreat was a good idea – what if my symptoms got worse? Is it more
important I get the MRI quickly?
More about the MRI later.
I’ll probably be disappearing into a
vortex of meditation, yoga, good food, etc etc so don’t be alarmed if I don’t
answer my phone over the next 10 days or so.
You
know what, what I’m facing is full-on. It really is. Trust me I know it. LIFE IS BEAUTIFUL but maybe
death is the real adventure.
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.
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.
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.
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.
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.
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.
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.
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| Cue blonde jokes |
"Where there's life, there's hope." It's not over yet.
Friday, March 22, 2013
Words escape me.
It's been a tough week. As some of you would know, I had a PET scan last Thursday. I didn't get a call from my doctor about the results until 6.30pm the following Friday. In the meantime, I was tied up in knots; I felt an anxiety even greater than I had ever experienced for any of my previous PET scans (all 12 of them). With good reason, it turns out.
I knew on Friday that my results weren't good. But I didn't get to discuss this in more detail with my doctor until the following Monday. This consultation was difficult. It was the first time, in my whole 17-month journey, that I was told the doctors did not believe that any treatment options for me were going to be curative.
At the moment my only hope (and I’m talking the smallest sliver of hope here) is a clinical
trial possibly followed up by some radiotherapy. But my doctor doesn’t even
sound confident about that, and he said he doesn’t want to instil me with any false hope about what I am facing here. And that’s not at danger of happening, I think that tank is running pretty low now.
In a nutshell: the good news (yes, there is some good news, hidden among this steaming, shitty pile of bad news) is that the radiotherapy worked. I have no lymphoma in my chest. No lymphoma in my arm. And the doctor says it probably won’t come back.
The bad news (and this is MAJORLY bad news) is that while I was busy getting radiotherapy in my chest, the cancer was growing elsewhere, and it wasn't holding back. As a result I have about five or six tumours across my abdomen, and a couple of them are very big, and very active, and pressing against some very important organs. One is spread below my breastbone, just outside the radiation field in my chest. One is pressing against my bowel. Then there are others dotted across my lower body. The lymphoma is still alive and kicking, unfortunately. The sub-editor in me wants to name this "Lympossible", because as my doctor has said, this cancer is proving impossible to eradicate.
So the options are running thin. Radiotherapy at the moment is not an option. The tumours are too big, and the areas too sensitive for them to use “eradicative” radiotherapy (radiotherapy strong enough to completely get rid of the tumours). Boosting my new immune system with Interferon is also not going to work. Once again the tumours are too big, and they’re not confident my immune system wants to do anything anyway, it just isn’t showing any signs of fighting. Standard chemotherapy isn’t a good option either – the doc says this could make me very unwell, land me into hospital for an extended period of time and it might not do any good. He doesn’t deem that a good use of my time, when I am basically feeling well right now.
So my doctor has recommended that I go on a clinical trial. There is a trial I am eligible for, but my platelets must be at an appropriate level before I can proceed. Last week my platelets were low but increasing, and on Monday I will get another test to confirm whether they have reached a suitable level. I will probably also need a biopsy (a simple day procedure) and perhaps a few other logistical things will need to be sorted out. At the moment I know very little about what the trial will involve. I have no idea how intensive it will be. I don't know if it will work and I am certainly not relying on it, because this is no tame lymphoma we are dealing with, this is a monster. To absolutely wipe out every single tiny little cancer cell is going to prove a monumental task and I don't know if it's going to happen.
So, psychologically, where am I at? I’m upset, obviously. It is not easy being told at 30 years old that I have a cancer that is basically impossible to treat. That I am basically at the end of the line here. But you've got to remember that I have been facing this for a long time now. Last year I was in a very similar situation, where my doctors did not believe I would even make it to my second stem cell transplant. I made it, against the odds, but now a bit less than a year later, I find myself back in the same situation, facing the full brunt of my mortality once again. I don't know how many get-out-of-jail cards I have, but I do keep in mind that anything is possible. I have thought about death, I have thought about this crazy cycle of life, the ways of the universe and what little control we have over this ... once upon a time the thought of being told by an oncologist that there is "nothing more we can do" was incomprehensible, but now I am in that situation and sometimes it feels surreal. But at the end of the day I'm not that surprised, just sad.
I have remained optimistic all the way throughout my journey, but I am also a realist. I've seen the scans, I've talked to doctors, I've been reached the darkest depths and most resounding highs throughout my journey and I have no delusions about what I am facing here. The journey ahead of me now feels comparable to crawling into a boxing ring to face Mike Tyson or Anthony Mundine, fists raised, with absolutely no boxing experience behind me whatsoever. If something works out for me from now on, then lucky me. But I also think it is important for me to accept that there is a strong probability that things won't work out.
However, please do not think I’m going to turn into some depressed, sad, shell of a person over
this. Over the past week I have felt I have had some "grieving" time to deal with the fact that my life could be over at 30. But I will be throwing everything into taking my mind off dying, and into living. I still have many things I want to achieve this year and I will be doing them. This morning I had a meeting at The Cancer Council to discuss working there as a volunteer media assistant two to three days a week. At the moment I feel like I need a distraction and a routine; something to occupy to mind as I go through this difficult period and it's something I really want to do. Last week I went into Royal Melbourne and spent some more time in the recording studio, to work some more on my song that might be featuring in a CD compilation. I have dreams of going to America this year and whatever happens, I will make it there. I have also been looking into other therapies, here and overseas, which I will be discussing with my doctors when I get a chance. I remain open-minded, within reason of course.
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| Me and the sound engineer in Royal Melbourne's recording studio |
And let's not forget the wonderful things that have happened over the last few weeks –
an amazing family reunion to celebrate 60 years in Australia (you’ve probably heard it here before, I have the
most amazing family in the world) last weekend, a trip to a friend's leafy retreat in the Dandenongs where I enjoyed awesome company and some dancing in my underwear, a free gig to go see Peter Murray (who I also got to meet backstage), provided by the wonderful RMH music therapist Emma O’Brien and early next week I am going to feature in the Q&A audience which will be filmed out at Werribee - yes I am a complete political nerd and this excites me immensely (look out for me on ABC1, Monday night, 9.30pm).
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| Me and my cousins (just a small sample) |
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| Oh hai Pete Murray |
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