It's Saturday lunch time, and I haven't had treatment this week.
I feel entitled to some energy, some clarity of thought, some break from the relentless fatigue.
But I'm just worn out today.
So when do I know I've got more get-up-and-go? First thing in the morning Huz and I hear Soul through the baby monitor that's still in his room. We can often hear him chatting away to himself or laughing, and when I go down to get him he's cuddling his teddies, or playing with his blankets - kicking his feet up into the air inside his sleeping bag.
And that's when I know. If I hear Soul and feel like jumping straight out of bed to get him then I must be feeling more like my old self. The me who loved to get up at 6am and go for a walk outside before coming into breakfast and to get the family up for the day. The me who used to work (from home) from 5.30-8.30am everyday at the kitchen table.
I love early mornings.
The whole day is ahead and is delicious with possibilities. It's quiet and full of anticipation and my mind is at its best: planning and hoping and thinking through the day.
This chemo has made me understand Huz who is definitely not a morning person. You know the type: the alarm (or wife) goes off and the not-morning person will groan, turn over in bed and hide under the covers until absolutely the last second possible.
Now that's me too.
The primal desire for more rest, more sleep, more time in those cozy covers overpowers.
The boys, (and in particular) True is my alarm, coming in at 7am on the dot and not often a minute later. My favourite mornings are the ones they are happy to sneak into bed next to me wrapping their legs and arms around me to keep warm, and talking in semi-whispered tones.
I love that time to be close, and have my favourite people near. Before the demands of the day get in the way and no one can find even one set of uniform pants to go to school, and there's a time out and only weet bix for breakfast instead of rice bubbles due to some offence. Before the crazy hits.
I like the quiet time before that.
But lots of time it's messy. Wee on the toilet seat and bathroom floor. Boys who make forts in their bedroom waaayyyy before morning. Arguments over who was playing with that toy first, or which of the older boys turn it is to have 'special time' with Soul in his cot. It's the messy and the beautiful intertwined, and I don't think they could be separated even if I tried.
Bottom line. I love my people. They're the best.
Naughtiest child in the house at the moment?
True. Definitely True.
It's a cyclic thing around here. Usually the boys pretty much take turns, and the boys who are not currently the record holder for naughty behaviour enjoy what Huz and I call, 'taking the high road' which usually (but not always) includes frequent reminders to naughty child exactly why they are being naughty, and to watch out because they don't want another time out believe you me, and an array of other haughty-taughty 'holier-than-thou' kinda vibes get put out there too.
It'll only be a day or so until the roles reverse. Then aforementioned naughty child is 'taking the high road' and 'holier-than-thou' child is humbled and now deemed the naughty one.
Being 6 must be pretty hard cos True has been the naughty child for a little longer than the regular 1-2 day spectrum.
It can't help that he's smart enough to at times call my bluff as I attempt to discipline from the couch (!). Suppose it only takes a little while to see that whilst Mum sounds cross, looks cross and is demanding he goes to time out…well..now…what's she really going to actually do about it. Get up? Ha! She hasn't moved for a week now! She's not likely to waste her first move on hauling my sorry self to time out he thinks.
But this time he was mistaken. oh yes. Mum moved.
Perhaps it was the pent up emotion of being on that couch for so long. Perhaps it was the cheeky smile True gave me followed up by his signature scowl. Whatever it was, I had decided the offence demanded a smack. On the hand. Right here right now. That'll learn him.
So True begs me not to. 'I'm sorry Mum, really I'm sorry'. 'It's too late' I reply. 'When Mummy asks you to go to time out you don't argue' and with that I go to smack his palm…and pretty much completely miss.
There is no satisfying sound.
There is no lesson learned.
There is still a little hand waiting for it's punishment.
There is just this feeling welling up in me wanting to burst out laughing. It's ridiculous all this being sick all the time and all this staggering off the couch, and all this failing, all this missing the mark.
All it takes is True looking at me with his big eyelashes a little confused, and my gaffawing laughter has me with head thrown back.
Poor True. He's confused. Then I draw him close and we cuddle and laugh. Just keep cuddling and we're still laughing.
Oh dear. What have I done.
Could this all be a little scarring? I mean, discipline is serious. Discipline is all about my True respecting adults and behaving appropriately, and I've just gone and ruined six years of…of…well of something important.
So that was that. Me back to my couch and True to playing with the cars.
It's such a beautiful mess this life of mine. Such a beautiful, blessed, messy messy life.
I am more than blessed.
Mayhem just walked out my front door and took with it my three sons and husband.
The sheer willpower it takes to get all three ready for school/childcare looking like their parents care about them (i.e. dressed in correct uniform, bags containing lunch, teeth brushed and hair even possibly combed) is a multilayered task that I am sure uses every skill set Huz and I have acquired with our four university degrees between us.
The negotiation and people management alone should qualify me for a high paying role in a big corporation somewhere. I'm thinking of updating my resume…
But when mayhem left so did the fun.
I listen to their chatter and footsteps on the deck, and then the 'click' of the gate and they're off. My tribe.
Now its just me here, with my water bag on my lower back, and I'm nestled in my 'spot' on the couch with the white pillow. I spend hours on this couch in the days following chemo. Technically I shouldn't need to gravitate here today. It's a week off chemo, and I should be full of beans and ready to go out into the big wide world and do all those things I've been dreaming of the past three weeks when I've been feeling so awful.
But here I am.
Maybe a bit of confidence knocked out of my sails, maybe I don't know how to be 'normal' anymore. Maybe there's just not much that I feel like doing to drag myself away from being all cozy.
I think it's got more to do with what I don't like to admit.
I'm exhausted.
From treatment, from the CT scan a couple of days ago. From appointments with Dr K, from port access and blood tests. From Tennyson Centre where I go to have all this fun. From the cough and cold that I can't shake for the past three weeks. From the ever present anaemia.
It's not just the medical stuff though. I'm emotionally exhausted from the constant processing of this diagnosis, of what it means to have breast cancer spread throughout my body, of what the images from the scan looked like with all the tumours in my liver and bones. With knowing that when my back aches it's not muscular, but instead it's the holes in my bones from the tumours that are the cause.
Yuck.
The CT scan showed that the cancer is stable. A good outcome by Dr K's standards. By my standards, it just sounds like a C+ when I was really after an A + for shrinking tumours.
I promise I will study harder for the next cancer exam.
But then, that's the problem isn't it?
Doesn't matter how faithfully I turn up each week for port access, blood work, appointments and chemotherapy, with a happy face on and a great attitude, then back home to lay on the couch with exhaustion for the next 6-7 days before I face it all again…well…look who's cancer doesn't really care.
Yup. My cancer doesn't care.
I guess cancer is a hard task master, and an unreasonable one at that. Best to not look him straight in the eye in case he gets mad. I'll just keep sneaking in the chemo to beat him back and maybe he won't get so cross in the future.
Oh my goodness, the life of a cancer patient is constantly bombarded by unwelcome, scary numbers.
I don't even care much for numbers. Maths at school was always my dreaded lesson, Dad spending literally hours tutoring me at home with his brilliant mathematical mind that left me behind daydreaming about how to escape having to ever use maths in my actual life.
Now it's my actual life.
Somehow Huz and I are still taken aback, and even shocked when tumor markers or CAT scans or MRI's come back with bad news. Yesterday it was a tumor marker of 10, 000 (a healthy number is about 130) that has skyrocketed from 7,000 even since last month, making my doctor question if the treatment is even working.
The scans I had only last month showed tumor reduction, but I'm still getting blood transfusions every couple of weeks and the numbers of my red blood cell count keep dropping, so something is very wrong.
My heart should know that this is what my stage IV diagnosis meant those four months ago. My heart should have done its crying and now understand that this number isn't 'newsworthy' as such…it's actually exactly what we were told would happen.
Treatment works for awhile and then it stops working. Tumors grow. I change chemo's. I pray it will work. I know that my God has the full picture even if my doctor doesn't.
Numbers frustrate me.
Being in bed or on the couch all day with exhaustion frustrates me.
Dr K seems baffled. He told us he's never had a patient in 35 years who has remained anaemic for this long.
I guess I'm just that special;)
Let's just say there was a fresh round of tears from me last night, and a fresh reminder that it's God who holds me and I am completely out of control at this point. It's all I can do to keep holding His hand.
Thank goodness I know He would never let go of mine.
It's a Saturday afternoon and the five of us are gathered in the living room waiting for pizza and watching the movie, 'Turbo'. Somehow I've managed to monopolise the heater (my favourite is laying spread out in front of it) and you're next to me Soul. You are busy playing with a puzzle and some sort of sorting game.
And all in a flash flood of emotion I'm looking at your little feet, fresh out of the bath, and I'm wondering where these feet will carry you in your life, the places you will go, what your passions and desires will be. And I feel it well up like a flash flood, this longing to see you grow, and have those late night conversations, and glimpse your heart, and for you to hear me tell you I love you, and for you to be old enough to remember it, know it, be without any doubt that you are deeply keenly loved by me. And it overwhelms me for a minute, so I grab that little foot and kiss it, knowing that it's not in my destiny to be here for the milestones that will gather and see you a grown man…And the ache of this takes the rest of the movie to settle into deeper places in my spirit - not gone - just put away into a safer place that won't threaten to pop out at any moment like that 'Jack In A Box' one of you boys were given.
So here I am thinking about you Soul. How I love your cheeky expression when you get your way, or your quick succession of, 'sorry, sorry, sorry mum' when you know you've misbehaved. I adore your big eyes, your air kisses and your ever growing array of sentences.
But I'm greedy.
I want to see you start school. See you join a basketball club. Help teach you how to ride a bike. I want to watch you grow into a gangly teenager who eats me out of house and home and who is much much taller than I am. I want to meet your first girlfriend, I want to be your confidant as you seek out who God has created you to be. I want to welcome your wife into our family.
Oh my goodness I want too much Soul.
And it's greedy of me because I longed with all my soul for you my darling after two miscarriages, and you are unashamedly the biggest miracle of my whole life. My joy was complete when I gave birth to you my third boy. God has big, beautiful, crazy, better-than-you-can-imagine plans for you.
I just ache because I so badly want to be a part of those plans.
So, here I am thinking of you, wanting to burn the memory of you into my very spirit, and wishing badly I could make all of the yuck that's happening/going to happen with me being sick just go away so we could always be together.
But I'll remind you as I'm reminding myself tonight that God is good and it's His hand that we hold as we go through this trial. We are not forgotten, and in the deepest part of me I am already looking forward to our family being together again in heaven.
He Who has promised is faithful.
I love you Soul.
xx
Huz and I celebrated our 'admission into the halls of highest human happiness' on the weekend! 12 years ago we were married at Blackwood Uniting Church with all of our dear family and friends by our sides. It was one of the best days of my life, and a day I will never forget as I married my one true love.
We spent two nights away at a hotel in the city and it was absolute bliss. Having Huz all to myself was unbelievable, and it was so very relaxing. With no schedule or places to have to be we just enjoyed two days of doing whatever took our fancy!
We managed to fit in a candlelit dinner at Vino's on Unley Rd, an amazing breakfast at the hotel the next morning after a relaxed start to the day, did some shopping, caught a movie, had a spa and champagne, and had lots of time for long chats and reconnecting after a hectic and stressful few months.
Our marriage has been a deeply happy one. Without a doubt I think we are the best married couple in the world. We have grown up together and enjoyed all the best life has to offer side by side. We have served together, renovated our house together, parented together, and enjoyed each other's company more than I can say. We have been truly blessed. It's a God thing.
I love our coffee's on the front deck. A chance to have a long chat about whatever takes our fancy. Huz is literally my favourite person in the world. He is an astonishingly wonderful husband, a great listener, he makes me laugh, he is loyal and kind and believes the best in me when I really don't deserve it. He has walked alongside me through thick and thin and he has my whole heart. I am deeply in love with this man.
Huz, I love you with all my heart. It's truly a privilege to have been married to the love of my life for 12 years.
You're my best thing. Definitely.
xx
