round one done!

Taxol round one done baby! For the last three weeks I have had my weekly infusion of taxol and as it happens pretty much a weekly blood transfusion or two thrown in there too. Add in a power port insertion surgery, and it's pretty safe to say I am a hospital dweller through and through.

my pretty orange decolletage after port is put in

The actual infusions themselves have been super straight forward and have been given over 3 or so hours. The blood transfusions are longer depending on how many units - they have taken up to 5 hours in the chair. Lucky those big old plush chairs at Tennyson are so darn comfy.

Huz making me laugh at chemo

The most challenging part without doubt has been the overwhelming fatigue that has made me feel each of my cells are gasping for oxygen, and then laying down on their own individual feather pillows and declaring a strike until I can organize better air flow and working conditions. C'mon little guys! This is when I need you the most and you are totally just laying down on the job. 

Slackers.

With my normal racing around a lie down actually sounds appealing, but this kind of tired has dragged along some unwelcome companions such as boredom (but too stinking exhausted to even play music) and a side serve of mild depression. 
 
Today I feel way less tired than I have done. A little corner of my heart is celebrating, but I'm cautious as day two after chemo is always mild compared to day three and four, so I'm expecting the next couple of days to be bumpy to say the least. 

I'm planning to try a couple of new things in the next few days to detox so I'll have to see if they make any difference at all. I've been drinking warm water with lemon juice squeezed in today - really really yum. Tomorrow I'll be having an epsom salt and lavender oil detox bath and might even throw in an enema if I'm feeling brave. Just want to take things into my own hands a little more instead of just waiting around for my jolly red blood count to hit the roof.

True and Brave are about to be dropped home by Granny & Gramps, Soul is coming round with cousin L and Aunty N and also Aunty A is coming round. She only has two more days here before flying back to Turkey and I'm going to totally lose it when she goes. It has been amazing to have her here. There are no words. When a sister fly's all the way around the world to see you when you are sick you know you are loved!

Aunty A came with me to treatment and some blood tests this past week. She is such sunshine. All the nurses love talking with her and she is just the perfect relaxing companion to take along. 

I just realised though that we havn't managed to take a photo of us together since she's come. No surprise really as I'm not exactly dressing to impress these days and barely ever really feel like having a camera pointed at me, but I have to remember to take some this afternoon amongst all the crazy!

Just one more thing since the boys aren't home yet...

My 'Jesus Calling' has been so very encouraging for my spirit over recent months. A recent theme in my life is all this waiting. Waiting for results. Waiting for this pain to pass, this chemo drip to finish, this afternoon to drag on, this exhaustion to cease. Waiting.

'Waiting on me means directing your attention to Me in hopeful anticipation of what I will do. It entails trusting Me with every fiber of your being instead of trying to figure things out yourself. Waiting on Me is the way I designed you to live; all day every day.' 

Light bulb moment. 

Waiting on God is not like waiting on circumstance. Waiting on God is how I have been designed to live in hopeful anticipation. It's just how to put skin on this when I'm not able to lift my head off the pillow, and my heart is sinking and downcast and it's just all hard work and I'm searching for the sunshine or even the silver lining; I'd take that...but even the lining seems grey.

So what does it look like to trust and wait on Jesus in these times. 

I guess I'm in the middle of learning.

brave's 5th birthday letter

Dear Brave

Tomorrow you are turning 5 years old. And in your words, 'What the hecka?'

Your little baby self is in my minds eye-so little, very petite, deep eyes peering back at me, and a persistent cry reminding me that you are really the boss now that you have arrived. 

You have always had spark. An attitude of defiance sometimes, and a straight forward unapologetic view of yourself and the world. Love that.

You play hard and then crash. I've not ever seen one of the other boys fall asleep in about 12 seconds flat as soon as their head hits the pillow like you do.

When you come in with your little lips pursed to kiss my cheek first thing in the morning, or your cheeky grin (with that dimple I love) tempting me to just scoop you up for a cuddle. Your cuddles are better than medicine. They heal.

And so the dressing up continues with True. You now have your own crazy schemes and plot outlines to contribute, and the giggling and the silliness ramps up even at 6.30am, and gets me all hot under the collar as Dad and i try to steal maybe just a few more minutes sleep. And then I listen in to the banter, and I can't stay mad, can't even wish you'd be quiet, because the two of you together have the strongest bond, the deepest love for each other, and the desperate need to hang out all the time. 

You love animals with passion. We used to say that you 'loved too hard' Brave. But it's changing, and you are loving with a sweetnesss in place of the hard squeeze it used to be, and Galahad likes you. We have been wanting to get you a dog. We will, because I sense it will be one of your 'happy places' in life. One of the things God has gifted you with.

Tomorrow we have Granny & Gramps, Aunty A (back from Turkey for 10 days) Aunty S, and Nana & Grandad coming at 7.30am for a birthday pancake breakfast. You are excited about opening presents, and I am exited about seeing you gorge down your maple syrup and pancakes and be celebrated and gets lots of cuddles and to tell you how glad we are you are here in our family, how we wouldn't want it any other way, how you being here is sunshine and joy and funny sayings, and smelly pops and asking you again and again if you washed your hands after visiting the bathroom, and you are loved Brave. You are deeply loved.

This weekend we have planned a 'space party' for you in Bonython Park. We have invited the whole class, and some special friends from church, and friends from far and wide are going to help cook and run games for you and basically just lavish love and attention on you Brave. Can't wait for you to have an amazing day.

It's always hard to put into concrete words what you boys mean to me. It's vast and it's hard to wrap it up like your presents and cards sitting on my dresser waiting to be given to you. 

The words don't seem large enough, potent enough to spread out loud on this page...just in case you think that 'I love you' is just three words next to each other, and not the feeling of a thousand balloons being let up into the sky at the same time and littering the blue air with colour and joy and abandonment. You are colour and life and a spectrum of bold wonder to me Brave.

Love you Brave,

Love Mummy xx

the best thing since sliced bread

Today I sit at the cancer center, hooked up to receive blood for a blood transfusion from a person I have never met. The soothing ticking over of the machine comforts me somehow. It's measured and it's steady; following protocol. My senses are all at once nauseous and clean, taken over by exhaustion and can I please just shut my eyes for a bit?

Last week Miss J explained the infusaport to me. She hauled me over the other side of the room, taking me past the brown padded chairs, and the dark grey ones with the wooden levers right up to the chair which Doris sat in. 

Doris said I could take a peek at her port. For a $10 fee. 

And after she was hilarious and witty and at probably around seventy years old, she seemed happy enough with it. 

Afterward, I saw Huz had been talking to the wrinkled beauty next to her. White hair and gentle, she had asked Huz if I was worried about having it put in. She told him that she had fought against having the port for a long time, 'but it's the best thing since sliced bread'.

Back at my own chair, I looked across, and she waved.

Thanks Doris and sweet old lady!

Yesterday the port went in, and today in goes the blood from a stranger. I'm feeling a little more awake 3 hours into the transfusion, but it's best not to get squirmy thinking about this blood, this life, this gift from a stranger.

I am more than blessed.

a reason for hope

After the knock at the door, my friend's husband was brave and handed me the meal she had made us. He could have left quickly, with a small tight smile or a sorry expression. He asked me how I was instead, if I was feeling positive? And all at once I didn't know how to answer, didn't know if I was positive or negative or ambivalent or just really scared.

It changes.

This morning it was hope filled with hope. As big as a hot air balloon headed into a sunshiney day with just a still breeze. 

This afternoon the knots started with a simple granny knot and built up and up on themselves until they could have held a ship steady against a warf. 

I answered him, but it was a simple answer. My hope is in Jesus. Not exactly sure what I'm meaning when I say it, and fully aware that this answer could be a let down as perhaps I'm supposed to be pretending I'm not dying. Pretending that my doctor didn't just show me scans with tumors throughout my body, growing and growing and making my eyesight go strange and my legs ache. 

I trust Jesus and choose to hold His hand, but I will not pretend this means I will see my 40th birthday. If I do it's gonna be a huge celebration. It will be at Carrick Hill on those huge lawns with hundreds of my favorite people, and it will be glorious, and I will raise my glass to the extra years, the ones I wasn't supposed to have, and I will think back to the knots and the fear and the year 2014, and it will be epic and I might even have some extra wrinkles, and my boys will be older, and I long for that.

But. if it's less time that I have then I will trust Jesus knows what He is doing with my family and my life. If all my days are written in His book, then i'm really not getting ripped off like it feels sometimes. The days were never mine to have. 

I really have to work on my answer though, because as the days turn into weeks, I want to be ready with an answer for the hope I possess. 

I think it looks harder to live this from the outside than it feels to live it from the inside. 

I have a reason for hope.

a day for Soul and I

Soul and I like a nice relaxed morning around here after sending the big boys off to school. He toddles, asks for puzzles, follows me around, and just lately has thrown into the mix standing silently half hidden in a doorway until I see him. When I look, he just stares back and says; 'hiding' before running off. It's become a serious sport! Reminds me of Pat from 'We Can Be Hero's'...totally cracks me up that show.

True and Brave are getting really good at doing 'bag jobs' before school (getting lunchbox from fridge, packing up readers and sight words, remembering a hat, jumper, umbrella etc), and I love seeing their independence. Just the last two afternoons, it's been the joy of cutting one's own kiwi fruit in half to go 'halvies' with your bro and then scoop out the rest with a spoon. They love it. It's the small things!

After school True has been exhausted despite being the older of the two by 15 months...playing hard, being around roomfuls of kids all day, i totally get how tiring that is. Maybe he's an introvert too? I sure am. 

But I felt lost after they left this morning. The demands left with them, so I just sat out on our huge red comfy chairs on the deck. No more 'requests' for a drink, to scramble for the lost shoe on the way out. Just a quiet little space, and I'm left thinking about what they are up to at school...is it reading time yet? Free play? 

I love that they joined forces yesterday with True's friends, and Brave just joined in. Love brothers that play all day every day together at home and then go back for more in the school yard. 

Makes my heart warm and glad that they are two peas in a pod.

love letter

I've woken up thinking of you Huz. It's one of those evenings where I can hear crickets outside the kitchen window as I sit and type, and the quiet ebb of the gentle breeze and soft light in the house is comforting and predictable. I love this house you built me.

You keep 'awow-sing' me (!) each day we have been made to walk this slimy path that winds, and just won't be made secure no matter how much I want it to be. 

Your steadiness, your perfect questions in my appointments, your hand holding...you bathe me in love and I was able to get the injection today because you were there. Elma is not'ing to me if I have my Huz with me. No numbing cream needed. You believe I can conquer it and deal with it, and so I believe I can too.

I love that you knew I just had to ignore the sweet, but chatty admin girl as I buckled down to go to 'my happy place' while the needle went in. I love that you loaded me up with cheese and biscuits down the arm of the chair. Love that you hated walking into that infusion room as much as I did; or was it because I did?...I love that you think the cancer center's slogan is as pretentious, insulting and full of marketing madness as i do ('for us, cancer is personal'). I love that you said that if I like Miss J the crazy nurse in the infusion center then you would like her too. She does totally crack me up. I need a little spark of crazy in that place.

I don't know if Dr K would pick up on the small ways you and I communicate in his appointments. We are the masters at loving 'undercover' you and I. It might be just a quick glance, you put your arm around me, stop to clarify a question, ask the awkward question (it's a brave man who asks the Dr about his wife's ovaries!) Just you standing by me, sitting in that horrible office that has delivered us blow after blow after blow of devastating news...but there you were with me again today-my incredible lover, my soul mate and my best friend. 

You're my best thing. Definitely.

xx

she's coming to visit

This morning began with a deep sadness, and has held far more joy than I ever gave it the possibility. If it were up to me it would have been a morning alone at home, waiting on my appointment, with a knotted stomach reminding me that the Brain MRI might not be clear. 

The day that started with nausea from a concoction of drugs, the day that Brave's little arms wrapped me up tight while i tried to sleep on. The day my mind kept running ahead to what the end of my days may feel like to live in. The day that I didn't hold out much hope for being anything fun or sunny or...well, much like living in technicolor.

But then the day surprised me in all the best ways, and in all the brightest ways, and the peace is bigger than the sadness.

I'm trying to put skin on what it looks like to live this 'cancer is back' thing. I'm wrestling with it. Not even trying to be gentle with this giant that has scared me since way back in 2011. Nothing tender in my confrontation of this beast. I will look at it from all sides, I will wade in and set my spirit and sights on Jesus the author and perfecter of my faith, and in Him I will come up trumps. I will.

But the trying to put skin on it is exhausting me, and I just want to 'get my nanna on' and pull that knee rug up and drink my tea and contemplate/nap it out.

Huz wants to whisk me away. Book a flight and just go. Maybe the big C wouldn't follow. But then that just seems a little too perfect and easy and I just love the sound of it. Pity I would just be carrying it with me. That sums up the hate I have of a disease that I can't even see, mostly don't even physically know I have, and for which the treatment is going to just about make me crazy.

But the best part of the whole day was when my sunshiney sister called from Turkey. She's been doing a lot of that lately. A lot of calls, a lot of Skype and FaceTime, and a lot of love poured out in prayers and tears and whys and the bond of sisterhood is strong and intense in my pain and diagnosis. She's coming to visit. She's not supposed to be here, was not at alll schedulled to come, and has to leave my three sweet nieces with my amazing brother in law for a week to do it, but she's coming.

And now I know it, now i've stopped telling her to quit being ridiculous and just not worry - we can keep Skyping, it's fine she's so far away, she's where she's meant to be doing what God has for her, fulfilling the dream of many years ago which was so potent they left it all for Turkey last year. And now I've stopped telling her not to come, I'm desperate to see her. Totally given in to the excitement of a huge hug, of some tears together, of her strength and beautiful heart to be here next to me. I can't wait. And it's only a week away! I don't even think I can wait that long to see her I really don't. 

So bring it on. Bring on another day of whatever it may be. Not only is my brain free of cancer, but my sister is coming. Today was awesome.

cancer is back

I'm asking Jesus to help me know how to write this. He is a very present help in times of trouble. 

My trouble this past week has given me a run for my money. My faith under fire as so much of what I have feared and hoped would not come to me is now here in deafening proportions. 

my cancer is back.

The facts are pretty straightforward: Monday morning I gave my onc Dr K a call as I had some blurred vision in my right eye and thought that a referral to an opthamologist (eye doctor) might be a good idea. Within the hour he had me booked into a brain scan and told me outright on the phone that it could be my cancer had spread to my brain.

The stink of death sat in the pit of my stomach.

I rang Huz and despite me saying to him not to worry he met me there at Tennyson. I sent a quick message to some girlfriends to pray for me, and I'm so glad I did. Straight after the appointment we met with Dr K who could see some tumors on my skull. 

'What the hecka' (as Brave would say) 

what the freakin' hecka! 

That was so entirely out of the blue, such a punch in the gut, such an arrow launched at my heart.

That same morning I was folding washing, cuddling Soul and tucking him into bed, and now I am told that I have terminal cancer. 

And we almost ran out to the car, and Huz held me while I sobbed and groaned, and begged it all away.

Then came 4 or 5 more tests; bone scans, CT scans, MRI's. My arm is pin pricked and my heart is too.

All I can say is that I'm heartbroken.

My Huz, my boys...it's all I can breathe, think or know. I'm not ready to say goodbye. They feel like home and I don't want to leave.

There's more to say, but my heart is aching too much.

May your grace be enough Jesus.

unlife

The following post was written almost a year ago, but here it is a little late, but better late than never!




to my boys:


i've been thinking about the power of my words. more to the point, the power of others words over my life. especially when i'm in a vulnerable place. especially when those words linger and stay: days, months or years.

sometimes it's been a collection of words - spoken by a few people - sending a message to my heart - demanding i listen and take heed.

but not all words spoken over my life, spoken into my particular circumstance are edifying, or even true. i've got a growing collection in my conscious memory of various doctors offices where i have had words of 'unlife' spoken over me; words that do nothing to build my spirit up, and instead do their darndest to tear my fragile-tissue-paper spirit.

words of 'unlife' can mascarade as knowledge. they can hide in good reason and under the blanket of statistics. words sending a message to my spirit that it's all for naught anyway, that evil has won, that my deep potent longing for peace and truth has run dry, evaporated with ill-health, or bad luck.

an example is the often said phrase, 'if you havn't got your health, you havn't got anything'.
these words has of late produced a gnawing ache in my spirit. until 15 months ago i was in perfect health my entire life, and in ways i am only beginning to recognise, that was a 'bubble' of protection i felt i was in. well now the bubble has popped...so now what?

words of unlife have often sounded so true when they are spoken over me. a couple of times i havn't recognised them, and so have spoken the same words from my own lips. nope. still unlife in em. guess unlife is unlife no matter who speaks it. My 'health' never was everything. i might have wanted it to be, but God never says if i loose my good health it's a deal breaker. instead he says that nothing can separate me from the sweet love of Jesus. nothing. and that includes cancer.

i've found though, that living 'with cancer' is quite the opposite to what I would have imagined. I have all that I need in sickness or in health. I possess the Spirit of God living in me to strengthen me to be able to do whatever is needed. often his strength in me has released me to put aside my own state of affairs and serve others. my eyes see life in a way i never could before. His spirit in me allows me to just breathe at those times my heart feels it will break. His spirit is the cool breeze that blows over me when all i am is angry and want to have a temper tantrum. His spirit washes me with a peace so steady in my heart that it doesnt make sense when you see what is going on around me. 

 instead of believing that 'i havn't got anything' i'm believing that actually i have all i need.

this is my answer when friends and family wonder aloud how we are coping with all that has happened in the last few years. this is my answer: in myself i'm not strong enough, i don't have enough reserves. in Christ i have all that i need, and his power is made perfect in my weakness.

Jesus, i love that you know just what i need, and today i needed to get this out of my head, and onto paper.