Monday, November 06 2017
It's been two months since I posted a long awaited update on Tracy's progress. A lot has happened in that time so I already feel overdue to write again.
Firstly the not so good news, Tracy's tumour markers have continued to rise. Also part of the not so good news is that she has not yet started on the second drug (which could be part of the reason for the continued rise). For those that haven't read the previous blog update. The nirvana of treatments for Tracy right now is a combination of two drugs. This combintation had a 25% response rate in the trial compared to 10% for the single drug that Tracy has already started. Sounds like a good idea right? The downside is the cost, the second drug is $5000-$6000 per month as it is not PBS funded. However, we didn't realise this wasn't the only thing that needed considering.
One of Tracy's gorgeous young colleagues set up a GoFundMe page for Tracy. We had felt everyone had already done so much and didn't want to ask again but she stepped in, set it up and asked for Tracy's permission to press Publish. Her kindness and enthusiasm (not to mention effort) couldn't be wasted and so Tracy went ahead. We were blown away (AGAIN) by the amazing outpouring of generosity (AGAIN) from friends and family. Along with the money I had donated directly to Tracy we had almost enough money for her to have 3 months of treament (note: I'm starting to throw some good news bits in here so it doesn't get quite as heavy as the last post:-). We were so profoundly grateful and excited and all shades of things words can't describe. It's hard to explain what having hope restored feels like. We thought Tracy would be started on the treatment within weeks. Many phone calls back and forth with the nurses trying to make a plan (but not really getting far) led Tracy to her next oncologist appoint.
Enter roadblock #1 - Tracy needed to have a barage of tests done, ECG, you name it, before she could even be prescribed the drug. Tracy had all the tests and passed ok. Phew!
Enter roadblock #2 - Tracy was told that unless she is sure she can fund 12 months of treatment she is better off staying on the single drug as it may not be effective, if she starts on the two, and then drops to the one on its own. Never saw that coming!
This, coupled with the rising tumour marker news delivered on the same day, made for a very tough appointment. Tracy was pretty low afterwards when I spoke to her. I wish I had been there with her. I would've done everything in my power to convince her and the oncologist that we would and could do the 12 months, whatever it takes, because I believe, that when you make a choice from a place of love, somehow the universe has your back, just like it has had all the way through until now. Help and hope often coming from unexpected places and in unexpected ways. And also, because I know, that if her cancer progresses further in the meantime, we can't undo that and I couldn't forgive myself if I hadn't done everything I could have. Needless to say I am booked in for her next oncologist appointment and will be having that discussion. I do trust Tracy's oncologist and know she must have faith in it being possible for Tracy to respond to the single, less expensive drug, but I just dont want Tracy to miss out on the best treatment plan unless it is totally unavoidable. By Tracy's next appointment we will have another round of tests to identify if she is is responding and that will also help her oncologist to determine likelihoods. At the same I am also watching Tracy's wellbeing from a more subjective angle and I am reminded of those months before her diagnosis, especially the month or two right before it. I always say I wish I knew then what I know now so I really want to make sure we do everything in our power, ask all the right questions, advocate for her and help give Tracy as much time as possible.
So now for more good news. You see, the universe has already been fast at work, completely out of the blue I received an email from a reporter for The North Shore Times saying they had come across Tracy's website and they wanted to do a story on her. I sent it on to Tracy and within days her story was in the newspaper. You can read it here. Since the story was published, people have read Tracy's story and jumped onto her GoFundMe page to donate. Some people we don't even know, and may never get to meet, and yet they are reaching out and offering their support and writing gorgeous messages. It's pretty incredible, actually, completely incredible. One man of a similar age, shared a little of his own story, a battle with bowel cancer. Our father died of this and many other relatives, it feels pretty special to have a bowel cancer survivor offering his generous support to Tracy now. Another lady placed an incredibly generous donation and left a message saying she had been touched by Tracy's story in the paper, hoped it would help Tracy access the treatment she needs and reminded them to take of each other. A beautiful message and there are so many more like it. Tracy's army continues to grow, even when we think it couldn't, and long time supporters are continuing to walk right along side us. Everything from $10 to $1000 and so it keeps adding up and making a difference. I hope every single person knows just how much it means to us and that they can follow the updates on this blog as a way of us keeping in touch. I've said it before, but I will say it again... if you ever want to know if the human spirit is alive and well, bursting with compassion, love and kindness, you needn't look further than here. This is where love lives. Thank you:-)
Before I go, we have one more favour to ask. Tracy's case is moving forward and the end of November though into December will be an important time. If you can please keep us in your prayers and thoughts over that time. It's really hard to have to go through all of the past 3.5 years in minute detail. It takes time, energy and a whole lot of emotional trauma especially when we consider how different the outcome could have been. However, despite the difficulty, it is so important. Mike, Sharon and I will be right with Tracy every step of the way. Having all of your thoughts with us will give us extra strength to draw from.
I will post another update to let you know when I have more news to share about Tracy's treatment and tumour markers. This time we had to take the good with the bad, next time I'm gunning for a good news post. Keep a look out for it:-)
Friday, September 01 2017
I've written countless blog updates in my head in the middle of those nights when sleep is hard to come by, but never typed them up, and somehow, so much time has gone by without me doing one. I apologise. I know you have all offered so much care and support to Tracy and want to know how she is doing. So, tonight I finally decided to just get up and type! As can be the case when it comes to the cancer rollercoaster, it has been one of those weeks when new test results snap your priorities back into focus and there has been a lot swirling around in my head. It's been quite some time since I've been with Tracy to one of her oncologist appoinments. I've had a fair bit of my own and other family needs/priorities to deal with over the past while and Tracy had been going along pretty well on the cancer trial she was on. One day that's the case, the next it's not. A drug can be working well for you but suddenly it stops doing so, the cancer builds up resistance, and when that happens, it's time to act and act quickly. When it changes, it changes fast and you have to find a way to keep up!
Tracy's test results last week showed this had happened with the trial drug she has been on for the past 8 months. So in what seemed like a snap decision it was determined she was no longer eligible to participate in the trial, and this week, we found ourselves back in her original oncologist's office. In reality it wasn't a snap decision but a very necessary one. A sharp, sustained rise in tumour markers and new lesions in her femur along with one in her liver were enough to convince me within a second that this was the right move. On the one hand it was so nice to be there in her original oncologist's office. She was incredible to all of us during those bewildering early months and took such great care of Tracy, often stepping outside of the boundaries of oncology. She takes so much time to answer every single question, and work through every single option. She is so caring and kind, whereas clinical trials can be so... clinical. They are about data and statistics and trying to get new drugs registered/approved. On the other hand, being where it all began, brought back quite a few memories about those early conversations regarding which line of treatment to try, what the pros and cons of each work etc...All pretty confronting when getting it right has such a sense of criticality? Unfortunately, it also all starts to get harder to make those choices as time goes on and treatment lines dwindle... At the start of a diagnosis, all of the options are on the table, but as you move from line of treatment to line of treatment, they start to diminish. The complexity in the points of difference gets technical, and your focus has to dial up a notch to meet the challenge. I ask a milliion questions. The oncologist boots up her laptop and patiently runs me through all of the trial data. We're a little overwehlmed and Tracy quietly whispers to me , 'I'm so glad you're here for this'. She had tried to tell me I didn't need to come. 'Clare, you don't have time, it's ok, I am fine to go by myself' she said, but she wasn't going to be able to convince me otherwise. I sat there and thought to myself, how important it is to prioritise what you need to when you need to! Time is so precious, how much of it do we spend wisely? How often do we spend it on what matters most to us in a day, and how often do we just get caught up in the seemingly endless barage of daily commitments? I know I don't always get it right, but I sat there grateful for doing so this time and for insisiting that I be there.
Obviously the fact that the cancer has progressed is very stressful. The good news is that there are still options other than 'end game chemo'. The not so good news is that they are not on the PBS (Pharmaceutical Benefits Scheme). They aren't on the PBS because they aren't approved for this specific use, mainly, I suspect, because it's a very long, bureaurcratic process to get from successful trial data to PBS listing. So, in essence, there is sufficient data to prove the drugs work in sufficient numbers to warrant their use for the purpose we would want Tracy to be on them for, however, they aren't funded for that use yet. That means, if you want to go on them, you have to pay the full cost. To give Tracy the best chance to stop this latest progression she would ideally go on a dual drug protocol. One of these is $800 per month ( I perk up immediately, start doing sums in my head and think... we can find a way to do that, this is great:-) then she tells us the cost of the second drug...$6000 per month!!! and we slump back into our chairs with deep, heavy sigh. Sensing our despair the oncologist presents the option of going on the cheaper drug on it's own. There is trial data for that and the response rate is 10% success. 10%. I quickly ask what the trial data response rate is for the dual drug protocol. 25%. Two and a half times!!! It's so hard to rationalise. How are you supposed to accept two and half less times the chance of stopping further progression when you know something better is available? The drug exists but you have to be able to pay. On the hand I know we have been so lucky that Tracy has spent 3.5 years responding to drugs that either were on the PBS or were on trial. Despite this, her medical costs have still been significant. On the other hand, I'm totally overwhelmed at what 3.5 years of $800 + $6000 per month totals in addition to all of her previous costs. Not that she would respond to, and therefore be on this protocol for 3.5 years, but, after a few more questions, I quickly understand that, unless Tracy becomes elgible for future trials, all options from here are unlikely to be on the PBS.
In my mind, running in parallel thought to the treatments costs, is the fact that Tracy has been working with a lawyer for the last year preparing a medical negligence case. I am so immensely proud of her for doing this. The harsh reality of how different her prognosis and quality of life could be if her symptoms and subsequent imaging had been reviewed more thoroughly back in April 2013, never fades. If her case reaches this just and fair conclusion then it could fund her treatment and help in so many other ways. There is comfort in this thought but also no guarantee, and the timing doesn't align. Tracy's cancer is progressing now and her case hasn't even had it's first mediation session. Ironically, this is scheduled for next week but has already been postponed once. Hopefully it does go ahead next week, but this will likely be the start of a process. It is going to take guts and bravery and will be confronting and emotional for Tracy, and for all of us, but we can only hope that the truth will be seen and that it will be worth it. Tracy and I have a brief side discussion around this, and how, if this happens it could fund her treatment. In true Tracy style, her initial thoughts are not to preserve herself and she counter states that she wants any funds to go towards giving Taya and Mike some financial security. She knows how much stress the financial pressure of the past few years has caused (even with all of the amazing support she has received) and she wants to take this away for them. I get that... but I quietly state that we would prefer her alive! This shouldn't be an either or situation. It just shouldn't.
So much new information to process all within the space of an hour and at the end of the appointment we needed to decide what drug protocol to start Tracy on. We decide on the cheaper one on it's own for now, at $800 a month. We agree that, if her case is successful, we immediately layer in the second drug and give her that 2.5 times chance of response. There is no trial data for this approach i.e. no documented cases of someone starting on the one and then adding the second one later. We also agree that we will keep a close eye on her progression and, if she doesn't respond to the single drug we then reconvene to discuss further, even if her case has not finalised. We leave feeling like we've come up with a good compromise for a plan of attack. Good. Or so I thought until I started to think and think some more and haven't stopped thinking over these past few days... how did we decide to take a compromise as an approach for someone we love so much's, chance at life? What if she doesn't respond to the single drug and the cancer 'does it's dash'? How could I live with that? I imagine the conversation I would have with Tracy about making changes so that I could fund her treatment. I'm starting work on compiling my counter arguements in my head! Yes it is a lot of money and I'm trying to find a small place for me and my kids and the housing market rise keeps pricing me out but... she is my sister and I know she will be reading this so consider this the start of my counter argument. All of Tracy's army has already dug deep and supported her so much I struggle with asking any more of our wonderful friends. We've had some fun along the way too and I don't know where we would be without all of your support.
All of these thoughts are still very raw but I can't help but think we didn't decide on the best plan but also really don't know. I've shed a few tears over this and feel I need to talk to her oncologist again. I wish we knew how and when her case will be determined but we don't. I wish the timing was better but it isn't. We still need to make the right decision wihtout having a crystal ball...
It's a heavy blog update, I know (sorry) but I'll leave you all with a happier thought... despite this post being what I thought and wrote about when I should have been sleeping last night, I'm not tired today. I'm not sad. I am feeling grateful and excited (what? you're thinking I am delerious right?). I'm not (well, maybe just a little). Seriously though, today is a special day. Our 'other sister', Lisa celebrates a milestone birthday today and my sisters and I, along with some of Lisa's closest girlfriends, get to celebrate over a long lunch enjoying the spring sunshine in the little slice of paradise where we live. Today we leave cancer behind, if only for the day:-) and I paused writing to walk on the beach and see the sunrise on the first day of Spring (picture included:-). I can thank the treatment dilema for the sunrise I would most likely have otherwise missed.
Friday, January 29 2016
It's been two years since that devastating day in January 2014. So much has happened in that time and it's really hard for anyone who has't experienced it, to get your head around what it is like to fight this terrible disease, especially in it's advanced metastatic stage. In this post we try to give a little insight into that. The good, the bad and the ugly but mostly to share how grateful we are to still have Tracy with us, regardless of what it takes. Because, most of all, we still have opportunities and that's what matters most.
Saturday, September 12 2015
Firstly, I am so sorry it has taken me so long to write another blog, but am happy to say that life got in the way J On the other hand, I must admit I have been taking my time over it as I think I have been tinkling away at this entry for far too long.
Thanks to my ‘meds’ and their side effects, some days can be a bit of a drag , but I am doing okay despite everything. Although I have been slack with my communications I can assure you that I still truly appreciate all the support I get and feel terrible that I haven’t acknowledged that for a while. The incredible help and support that I received last year by my family, the fundraising committee and friends were truly amazing and have helped me so much. Not only did it give me strength but all the donations that we received helped us financially in such a big way. The cost of my meds and scans is endless, so ‘thank you’ just doesn’t seem enough!!
Okay, I think a quick health update should come next. I have spent the last 7-8 months on Hormone Therapy to give my body a break from all the chemo last year. I can stay on these drugs as long as I remain stable, or close to it. Therefore, for those of you who haven’t seen me for a while may not recognize me (I know I can’t get used to it). Don’t get me wrong I am over the moon to have eyebrows and eyelashes again….and hair too of course, but it’s just taking me some time to get used to my dark, thick locks. The latest news is that I better start getting used to my dark hair as it is here to stay for a while. My oncologist thinks that I will probably be starting a new treatment in the next couple of months; however this will depend on my tumour markers and my monthly blood tests. Once I do start my next treatment it will be a tablet form of Chemotherapy which doesn’t cause hair loss. A medicine called Xeloda probably.
Okay, it seems once I start talking about my thoughts, it’s hard to stop…so If you want to keep reading may I suggest a glass of wine, or a refreshing cold beer and somewhere to sit with a few tissues (sorry) Ahhhh! (That’s me sipping a beer by the way) I might have lost my taste for alcohol, but I still enjoy a good slurp from time to time J BUT if you are not up for much more, thanks for listening so far.
Hope - A word often associated with life threatening illnesses…and boy are there plenty. I try not to focus on hope too much as I want to keep realistic. Having said that, I do tend give myself little life goals….for example, I hope to see my daughter, Taya turn 8 years old this year. Of course I would love even more to be there for her through Primary School but I don’t want to be over positive and then not be prepared to leave this world earlier. Being there for her 8th birthday is realistic for me, or at least I think it is. I also hope no one else that I am close to gets ill, but if it means that I am ill because they are not, and then let me have it…and bring it on!! I hope that everyone gets checked regularly and don’t let the doctors miss anything. I hope that Taya never forgets how much I love and adore her and that I will always be living in her heart, forever and ever no matter what!
Acceptance – I think we can agree that last year was certainly tough on me and my family, and you can’t help trying to think, as hard as you can…..what you did wrong. Could I have avoided this? Why has this happened to me now, when I have a young daughter who is always going to need me – just as I needed my mum growing up. What if I didn’t try so hard to have another child, and therefore avoided putting my body through 5 unsuccessful rounds of IVF! Was I too needy, and am now being ‘punished’ for perhaps not appreciating what I had and just stopping there. Well, I think we all know that a bunch of “what if’s” really isn’t good for us, and in any case I most certainly do appreciate my daughter (of course)…so much that I wanted to be able to tell her one day that we did everything we could to give her a sibling. A sibling/child that she and I still long for to this day, however having a cancer that ‘feeds’ off estrogen and progesterone has made this impossible, and I need to accept this. Easier said than done of course, but unfortunately I also need to accept the fact that I have a cancer that’s not going anywhere, and although both these things are hard, the toughest acceptance of all is knowing that I won’t always be able to be there for my little girl. How does everyone else who is in my position accept this? I feel sad about what I’m going to miss out on… you know, all those mother and daughter moments and milestones. I find myself trying to prepare her for the future even though I am fully aware she is only 7 years old. I struggle with the fact that I will most probably never get to meet the man she falls in love with, to know her as a teenager or a grown adult. To make sure that this man respects and appreciates her the way she is and to spend my senior years doting over their children. So, when I think of the future, I know I need to try and accept all these things we take for granted when raising a child will be out of my reach, and whilst I sit here thinking of my own heartache I can’t help but think of hers too.
Time – Well if you asked me a few years ago what I would be doing now, I would never have thought I’d be saying things like “Please mind my port” (and not the drinkable sort), and “Please be careful near me”, or worst of all not be able to pick my daughter up for a cuddle, or do the things she loves with her. I find myself starring at mums that have their child embracing them on their hip….I used to love that J. Now my little girl helps me count out 224 tablets into my weekly pill box.
Not knowing how much time I have is both good and bad (for obvious reasons), but either way I sometimes feel the need to prepare myself. I want to treasure every day but I find it hard to, sometimes I have good days but sometimes I have bad days where I feel very anxious, or worried, or just unwell or exhausted. It’s quite frustrating really as before I got sick I was desperate to spend more time with Taya but I didn’t have time, and now I have time but sometimes find it hard to enjoy it. Luckily that’s only sometimes, as other times I almost forget I’m sick and I love those moments. I do treasure making new memories whilst I can, as I am aware at some point things will change and that day scares me a lot.
Balance – An important piece to life’s puzzle I feel, but then again what Libran doesn’t feel that way. Getting the balance right isn’t always as easy as it may seem, in fact it takes a fair bit of mindset, organization, consideration and preparation….something most of us try to juggle everyday of our lives. So what happens if we don’t get the balance right? For some of us, maybe nothing… or so we think until it catches up with us one day. Others might get a wakeup call earlier and get a second chance, and for those people out there who have worked hard at achieving that balance from the beginning, well….turn around because I want to pat you on the back and read your book!
Fear – Okay so we all have fears and we all fear different things. Being alone, small spaces, not fitting in, snakes, spiders….dying? I’ve always said that I’m not scared to die as long as it’s quick and fairly painless. Okay, I know what you’re thinking, not ideal…right? I guess I wasn’t thinking of Cancer when I thought that, in fact back then I had no idea how much Cancer is out there. Even though we may realise how much Cancer is around us, we still hope it doesn’t happen to us – but when it does happen we have no choice but to fight back with all our might, so we can have as much time with our loved ones as possible (however long that is). This is where my fear of dying changes. First of all, it scares me how much I don’t know about Cancer. How can someone with cancer appear okay one week and then gone the next? How sick will I be when I’m at my worst and how bad will it get for how long? How will this affect my family? The last thing I want to do is drag them down with me and make everything worse or more painful. I am so scared of what’s to come - Am I strong enough?
Okay, I think I have done enough thinking for now and thanks for listening. I am not really that great at putting thoughts and feelings onto paper so I apologise for that, but on the other hand I do feel it was quite therapeutic for me. Before I sign off I want to re-iterate my thanks to my Fundraising Committee, every person who has donated their precious money or time to help me, my sisters (you are my rocks), my husband and daughter (you are the wind beneath my wings my gorgeous girl) and my Oncologist Lina who has always got my back, next to my family. It’s depressing to think that I almost ended up paralyzed in a wheel chair last year, so this year I appreciate not living that life, and take time to thank my sister Clare for being so persistent with the Doctors on my behalf, and to thank the Doctors who operated on me and to thank my sister Sharon who always accompanied me to my long chemo/transfusion sessions. I know it pains my mother to know I am sick, and I know if she weren’t ill herself she would be right by my side too. I am sorry mom (we remember you).
I like to finish off with a quote from Abraham Lincoln.
“In the end, it’s not the years in your life that count. It’s the life in your years”
I like this quote because it makes me feel prepared for myself, although I don’t really feel my predicament is about me. I am fighting for my family, and they’re worth it J I love you guys XXX
Sunday, September 28 2014
A long overdue update on Tracy's treatment so far and the summer break ahead. After what seemed like weeks of rain and with a forecast of pure sunshine ahead the timing couldn't be more perfect. And if it must rain again, at least there will always be rainbows to be found.
Monday, June 16 2014
A reflection the day after our Touched by Tracy gala dinner. A night to remember and so much more. A video snippet to enjoy and a heartfelt thank you to everyone who made the dream, that started only a few months ago, come true. Some things turn out better than you can ever imagine.