Saturation point

First of all, a bit on the “Look Good, Feel Better” workshop that I attended at the hospital where I have my chemotherapy last week.  The program is available for all women going through chemotherapy, and I highly recommend it.  Cancer brings with it a lot of affronts to your self-esteem and image.  There are the extra lines that worry and fear etch into your face.  Dry skin, changes associated with menopause, which most (including myself) go into prematurely due to cancer treatment.  And of course, most people lose their hair, and this can be the biggest obstacle of all.  In my cancer support group, we often refer to cancer as “the gift that keeps on giving”, with a huge dose of sarcasm, as really, sometimes it seems endless, what it can take from your life.

At “Look Good, Feel Better”, they understand this, and over the course of a morning, they try to give you a little of it back.   You are gifted a lot of skincare and make up and volunteers from the beauty industry then spend an hour showing you how to care for your skin, and apply make up, especially during cancer treatment.  It included things like drawing on your eyebrows in a natural looking way, and although I have not lost my eyebrows, I could see what it meant to the women who had, to see their “normal” face to start to appear again, before their eyes.

Here I am after my make up session:

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The second hour, after a lovely morning tea, was devoted to the fitting, and trying on of wigs.  Two lovely ladies came from the “wig library”, with a multitude of wigs for the participants to try on.  Out of the 16 women there, I was the only one that had not lost my hair (it is rare to lose your hair during first line chemotherapy for bowel cancer), and I thought I would be at a bit of a loose end, but I had such a lovely time interacting and chatting to the other women who were trying on the wigs.  To be quite honest it was deeply moving, to see these women, their eyes shining when they looked in the mirror.  To look a little more like “them”, and to help them dream of what all of us with cancer want…a dream that there will be a life again at the end of this, and we will find ourselves, the person we used to be at the other end of it.  Very different, very changed, maybe better for what we have been through, but…..still us.  Because when you have cancer you get totally lost in it.

Reality bit the next day when I was admitted to The Alfred Hospital in Melbourne, for the first stage of my liver resection procedure.  This was a relatively minor procedure, known as a “portal vein embolisation”, which aims to block the blood supply to the “worst” half of the liver, and makes the “better” half grow, so the surgeon has more liver to work with when he completes the procedure in early December, at which time he will remove all of the right lobe of my liver, and also take one tumour from the left.

Don’t get me wrong, I was GLAD to be going in for this procedure.  The pretty much guarantees that the liver resection will go ahead, and this is  something that we have spent nearly 11 months working towards, in fact, the surgery will take place on pretty much the first anniversary of my diagnosis.  Last December I was a person with no hope, and only a small amount of time, and in all honesty, this December was not one I was sure of seeing.  Now, the end of this year could find me in remission, and with some hope to cling to.  It’s a good thing, a very good thing.  To have another Christmas, to turn my face to the sun, to swim with my girls, to learn again to face life with courage, and dream of a future that is not so finite.

This admission taught me though, that I am very near the limits of what I can tolerate mentally on this journey.  If everything goes “well”, I can just about manage, but anything outside my comfort zone sends me right over the edge.  I hyperventilated nearly all the way there in the car.  Walking into the hospital itself was a struggle, the sights, the sounds, and particularly problematic for me nowadays – the smells.  Antiseptic, hospital food, bleach….I just feel physically ill straight away.  Then I was shut in a claustrophobic room with a nurse who was doing my admission, and I had to ask her to open the door, as I was verging on a panic attack.  So, you can imagine how I felt when they sent me to the ward where I would spend an overnight, with this view.

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My roommates for the night were to be three really elderly and obviously very ill men.  If the view wasn’t enough, I just didn’t think this was appropriate, and had something of a meltdown, insisting that I could not stay there.  And for all the world,  I don’t believe I could have.  It’s bad enough that you have to spend a night away from your family and everything that gives you comfort, but to do it in a terrifying, dungeon like room, which looks like it was formally an asylum (complete with chicken wire outside the windows, to prevent escape or jumping I should imagine).  I looked wide eyed, back and forward from the nurse to my husband, and insisted about 20 times that I was NOT staying there.  It was a relief when they came and got me for surgery, and I only hoped that I could stay there as long as possible and avoid being bought back to this hell.

In theatre I was prepared for sedation and told that I might be awake for some of the procedure, as it was only twilight sedation.  Unfortunately, as my liver veins were quite complicated to block (and at one stage they thought they had done it, but when they checked there was still some blood flowing to the right side, so they had to go in again), and the procedure took just under 3 hours, I ended up being awake for quite a bit of the end of the procedure, and I think the local anaesthetic had pretty much worn off, as I could feel things going through my liver veins, like, literally feel it.  It was unpleasant to say the least.  This is the reality of what this life is really like, this picture taken not even a full 24 hours after my “Look Good, Feel Better” photo:

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I can put on my make up and put on my smile, and show the world my game face, and I can enjoy life as best I can.  But the reality is, if I want to keep enjoying it, I have to keep facing these invasive procedures, and the pain and fear and sheer loneliness that comes with them.  Thankfully, much pity was taken on my mental state, and my intention to check myself out of the hospital without staying overnight, and I was wheeled back to a female ward where I could see this:

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Here comes the sun?  I can only hope so.

Beautiful in our eyes.

In the last few weeks of my nearly 42 week pregnancy with my last daughter, all I wanted to be was not pregnant.  Four pregnancies in as many years had worn me down, I had restless legs, and shocking carpal tunnel syndrome which left me banging my hands into hard surfaces in the wee hours to get some relief from the sensation.  I couldn’t wait for it to be over.

Then, my daughter Georgia was born, and I wanted nothing more than to be pregnant again.  I would have been happy to be pregnant forever, if it meant that I never had to face what it meant to raise a child with Down syndrome.

The first 24 hours after her birth could be described with one word – agony.  As the reality set in, we howled like we were wounded, punctuated with brief interludes of conversation that continued only long enough for one or both of us to start again.  We were plagued by fears that looking back, I can only describe as irrational, and born out of ignorance that comes from having very little exposure to the world of children with special needs.

In the first hours after she was born, I emerged from the bathroom to find Gaz cradling our baby.  “Put her back”, I said.  He looked at me bewildered.  “Back in the crib?”  I sobbed…”Inside me!  Put her back inside me!  I can’t un-know this, I can’t change it, I can never fix it!  I want her back inside me, I want the dream of her again!”  A few hours later, a midwife found me, baby in the middle of the bed, me sitting on the edge, with my hands grasping the sides of my head, and covering my ears.  She, concerned, asked if i had a headache.  No, I said.  I’m afraid she’ll hear the thoughts in my head, that they’ll touch her, that she’ll know I feel these negative things about her.  The midwife assured me that she would be totally oblivious, but the guilt was all consuming.

But, as we contemplated the ruin of our lives, we didn’t know that our girl had superpowers, and she had already gone to work on our hearts.  It soon became obvious that she had a serenity that we had never seen in the three children that had come before her.  All that she required was to be held, and she sank her whole body against whoever was holding her, and sighed, a sound I had never heard coming from a newborn.  Her eyes, sightless from cataracts, still managed to convey her comfort, her ease at knowing that you had her close, and all was right with her world.

And so we realised that everything WAS right in her world.  She knew nothing of the fact that the hot tears that sometimes fell on her face where ones of sheer terror.  That people were telling us they were sorry that she was, and that words like grief, loss of hopes and dreams, and even the word “tragedy” were used to describe her existence on this earth.  And we realised that we alone had the power to change all that.  Next time someone looked at me with tears in their eyes, and said “What can I say?”  I said  “Congratulations?”  And my eyes challenged them to DARE to think otherwise.  My need to protect her lit a new fire in me.  I was….fierce.

I will never deny the fact that grief has a place when you give birth to a child who brings a set of circumstances very different to what you imagined.  Because for nine months, I thought I knew my Georgie.  After all, she dwelled in me, our hearts beat next to each other.  I didn’t know what she would look like, but I imagined it would be pretty much like what the other three looked like, and I very much imagined the sisterly relationship I would watch develop.  Yes, I hadn’t met her, but I knew her.  Until she emerged with her almond shaped eyes and her floppy muscle tone, and I felt I had been carrying a stranger, and I did not know this child at all.

Then I took this stranger that was my baby home, and vowed to raise her exactly the same as I did every other baby I had.  And before long, it was…easy.  Because it might have taken a while for me to feel like I knew her, but she knew me.  She always knew me.  She’d heard me read her stories, and her daddy and sisters talk to her through my tummy.  We took her for a walk through the house, and told her which room was which, and even though she couldn’t see them, she could feel that she had walked through them before, and she was home.  And I realised that nothing could lay waste to my hopes and dreams but my own attitude.  When you realise there is nothing tragic about a situation, it simply ceases to be a tragedy.

And so, in Down syndrome awareness month, I give you Georgia.  If you want to see something sad, best you look away now.  If you want to see the joy that comes from opening your heart to someone you never knew you wanted or needed, feast your eyes :)

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Does this look sad to you? :)

But you look so WELL!

This was me, on my 40th birthday, 3 and a half years ago.  I didn’t have cancer.

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I was the fattest I’d ever been, nudging 130kg, and a size 26.  And I was miserable.  We went to QLD for my birthday, and I remember worrying on the way to the airport whether I could still get the plane seatbelt done up, or I would have to ask for an extender.  I managed to get it done up, but it was an effort.  I could go on very few rides with my daughters as I could not get the harnesses done up.  My hips hurt all the time, I was worried I would break chairs if I sat on them, and I wasn’t living anything like a full life.  I HATED myself.  But I felt like I had done everything I could, in this lifelong battle with my weight.  Every diet, every shake, every appetite suppressant, duromine (legal speed), which stripped the weight from me and had me manically cleaning the shower at 4am in an attempt to get tired enough to sleep, but I put it back on just as quickly as soon as I stopped.  I was seriously considering a gastric bypass, but feared losing one of the only things I felt I had in my favour – my gregarious nature, often fuelled by alcohol, and long lunches and nights entertaining on the deck.  And if I didn’t have that, what did I have?  Also, by all intents and purposes, I was healthy.  I had birthed four children without any of the problems often experienced by obese mothers, and any tests taken by doctors subsequently, to try and show me the strain my weight was putting on my body, proved to be perfectly normal.

This is me today, at 43, with stage 4 cancer:

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In the two years preceding my diagnosis, cancer ate me from the inside.  The weight came off slowly, and i did not get on the scales, so I didn’t know how much I was losing.  The weight loss ramped up in the last few months before I was given the news, but again, I didn’t think much of it.  I was studying full time, raising four children, I was too busy to sit around and eat.   I also totally lost my taste for wine, which I used to drink in copious amounts on Friday nights.  That in itself should have made me realise that something was seriously wrong!

I realised something was really wrong just before my colonoscopy, when the doctor told me to get on the scales, and I realised that I had dropped 26kg from my 40th birthday weight…without even trying.  Now after a few operations, chemo, nausea, loss of appetite, and having enough intestine removed that it makes me feel like I’ve had a gastric bypass, my weight loss hovers around the 32 kilo mark.  I’ve gone from a size 26, to a size 18, and as a result,  I have developed a real passion for fashion, makeup, hair, and shoes.  I wear these things so much better than I ever could have before, and I’m loving every minute of it.

Of course, it is surreal to be told how well you look, when being ravaged by stage 4 cancer, and it’s various aggressive treatments.  But the thing is, it’s true.  Outside of operation pain, and some pretty extreme chemo sickness, I am in the best shape I’ve been in many years, and my weight caused me to feel far more shit than cancer ever did.  I returned to QLD in March and looked in awe at all the extra belt I had after I did it up.  Any chance I get to take a theme park ride with my children, I take it.  I don the bathers and I swim with them, and I soak up every chance I have to grab life with both hands.  In fact, if I didn’t live in fear of that life being taken by cancer, I’d probably be the happiest I’ve ever been.

Cancer is a formidable foe, but I am learning to make friends with it where I can.  It’s given me confidence, and most of all, it’s given me courage.  I no longer fear the person I really am.  Because chemo didn’t take my hair, I took a deep breath and had a go at a hairstyle that I have wanted to try ever since i had a girl crush on Marie from Roxette!  And best of all, it worked, and it will now be my forever hairstyle.  I’ve always wanted a sleeve tattoo, and as a remission present, I am getting one, because bugger it, the way I choose to express myself is about me, not whether it pleases anyone else.  I’ve got very little time for bullshit (though in truth, I never had very much), and there is one thing I NEVER do anymore – anything that I don’t want to!  My time is too precious for that.  I’ve developed a lot deeper friendships that I ever allowed myself to do in the past, and I have offered them a vulnerable side to myself that has very rarely been on show.  I have written about things like my experience of childhood sexual abuse, and even bigger, I have put this writing out into the public domain.  The rich reward for this was finding a solidarity with other people, finding that I was not alone in my pain, and a gratitude from some readers that they found the same thing.  I’m a far better person post cancer than I ever was before, and I am really starting to like myself.  The goal now is to stay around long enough to find out who I can become, and what I can achieve, as I’m really quite curious.

A very dear friend once told me that there are positives to be taken from all of life’s journeys, even the bad ones, and I’ve found the silver lining that has been offered by this one – a chance to become the very best person I can be.

So cancer, really……thanks.  But you can fuck off now!

Before normal walked away

A couple of years ago I wrote this guest piece for popular blogger Retro Mummy.

http://retromummy.com/2012/07/25/tell-me-your-story-julia/

I told the story of the birth of my fourth daughter Georgie, who was found to have Down syndrome at birth.  In it I wrote about the line that I felt was drawn down the centre of my life when we knew she carried an extra copy of Chromosome 21.  That it was a momentous event, with life divided by the days she was born, and the days we lived before her.  In the fraught days that followed, I remember being very haunted by a photo taken a few hours before she was born..me smiling, delighting in the anticipation of the new daughter we were about to meet…in the last hours before normal walked away, and we had to replace it with something new and find our groove again.  We didn’t know if we could at the time, but to our surprise, we thrived.

At the time, I thought you couldn’t draw a deeper line than that.  But just a few years later, I was haunted by another photo:

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I remember the moment so well.  I was trying to get a good photo for our annual Christmas cards.  No one was feeling very patient with me, and this one, with Georgie’s eyes firmly closed, was the best of about 50.  I had a keen interest in photography, and I was trying to get good camera angles, and good light, and I was laughing, and they were laughing, because I kept stepping backwards for a better shot, until I fell into a bush.  We sat there in the sun and ate some fruit, and I remember looking at them and wondering how I had produced something so golden, so beautiful….so very, very hard to ever leave.  I knew that my life could change the next day, as I had a colonoscopy booked that I was starting to realise might turn out badly for me.  It was the last day I had any relationship with carefree, and the last day I ever would again.  Less than 24 hours after this photo was taken, and I sat on the grass having a picnic with my golden girls, I heard the fateful words “I’m sorry, you have cancer”.  And a line was drawn again.  This one was cut into my psyche like a jagged scar.  One that might fade a little with time, but one I knew I could never be rid of for good.

I was surprised to find that you can find a way to live with cancer.  It’s not easy.  In it’s immediate aftermath, especially after a terminal diagnosis, the shock renders you nearly unable to function.  The gut wrenching fear when your mind takes you to places so dark you wonder how people who have gone before you have not gone stark raving mad after they have visited them.  The horror of seeing your husband literally unable to stand, rocking backwards and forwards on the floor, howling, while you stand, as though outside of body, and watch your 7 year old child sit next to him and pat him, and say “it’s ok daddy, mummy will be ok”.  The numb resignation of knowing that one day you have to tell them that a doctor said that mummy can never get better.  One day, but not that day, because that day you are just trying not to die from the sheer heartbreak of it.

You soon learn that grief is unsustainable at this intensity.  I couldn’t have normal anymore, so I learned to cling to the little bits of it that I could.  The days that I was not so sick from chemotherapy and was able to make them a meal and put it on the table.  The days that I was not so weak from low iron counts that I was able to take them out and have some fun, or let them have their little friends over.  Days when we went out as a family, and watched our children run on the beach, or at a playground, and tried not to anticipate how long it would be before we weren’t able to anymore.  Taking as many photos as we could, before I went missing from them.

Today, because of a positive response to treatment, we might find ourselves drawing another line in a few months.  The words “you are in remission” might blur the scar on my psyche that cancer put there….might make the wound a little shallower.  It’s still a good few months away from being possible, but my treating team seem to believe we have a good chance of getting there.  And if so, there will another new normal to find, that will involve living my life, for the rest of my life, in 3 monthly intervals, between scans to see if my cancer has returned.  There is a small chance it won’t, and a big chance it will, and I’ll always know this.  But I’ll also live these intervals with every bit of fervour I can muster, because I had this, and I want this again.  More than I have ever wanted anything, ever:

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And I have to believe I can.

No one here gets out alive.

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Except, sometimes they do.

It’s been an interesting week and a half.  I probably find myself in the best position medically in my battle with stage 4 bowel and liver cancer, since I was diagnosed in December last year.  My primary tumour in my bowel has been successfully removed, with clear margins and I no longer have any signs of cancer in that area.  My liver had 6 active tumours at diagnosis, and only two of these are currently showing any signs of activity.  And so, after two more cycles of chemotherapy, I will proceed to a two stage liver re-section procedure, which will hopefully remove all the remaining cancer from my liver, which will eventually, because it’s a clever little organ, grow back as good as new.  The liver re-section is a bit of a “game changer” in the fight against metastatic bowel cancer with liver spread, as it is done with what the surgeons call “curative intent”.  That doesn’t mean it cures everyone, not by a long shot, but it allows what every cancer patient, especially those at stage 4 need in their lives – hope.

I got the news that surgery will almost certainly proceed on the Tuesday just gone.  Today, just two days later, I was admitted at home as a palliative care patient, in order to access their services.  It was a strange place to find myself, but a chat to staff at the chemotherapy unit last week, about my current and future needs (counselling, advocacy, pain and symptom management being the most pressing) revealed that palliative care admission was my best way to get everything happening under one “banner” so to speak.

Last Monday, when this discussion took place didn’t find me in a very good place mentally.  The battle has been nine months long so far, and has involved a diagnosis of terminal cancer, a couple of major surgeries, a colostomy, 6 cycles of chemotherapy, 25 radiotherapy sessions, 7 blood clots, 1 naso-gastric tube, 1 MET call, 3 times where I was declared to be no more than 24 hours from death had medical treatment not commenced at that time, absolutely countless chemotherapy pills, pain medication, twice daily blood thinning injections, 2 bowel obstructions and the loss of something stupid like a metre of my intestines.  I was also being infused with the poison that I need to control my cancer, but which the time before left me grappling with the worst nausea I have ever experienced, and had me bed ridden for a week.  Yes, mentally, more than physically, I FELT like I was dying, and palliative care were not the words I wanted to hear.

However, it would seem that palliative care is about living, not dying, about having the best life you can, and how they can facilitate this, and yes, nowadays with so much advancement in cancer treatment it sometimes becomes almost a chronic disease with many years of stability – people sometimes do get out alive.

The nurse and psychologist who arrived at my home this morning were the loveliest of lovely people.  You would have to be someone special to work in palliative care I think, and these two women simply radiated this specialness.  They put me at ease straight away.

It’s a weird place to find yourself though.  My four daughters are home on school holidays, and between their noise and laughter, and an overexcited pug barking, the room was simply bursting with LIFE, and yet I sat opposite two women who on a daily basis facilitate a peaceful death for people.  And while I plan of course to be one of the people who beats the odds, I had to accept that the chance exists that one day they will do that for me.

I found the admission to be mostly a positive experience.  I didn’t cry at all, though I nearly did when the nurse took my hands, and looked into my eyes, (after listening to me rabbit on about how this was impacting on my family, and what i want done for them) and said “but what about you, what do YOU want?  This is about you!”

The thing is, I’m a mum, and a partner and a friend who used to be a listening ear for other people, and despite me being the one going through all this, I find it hard to put myself at the centre of the picture.  I still want to nurture, and protect, and shield the people around me who this hurts so much, and I try to keep the raw reality of the fear, pain, loss of identity, loss of innocence (the kind you have when you don’t know for sure you’ll live to be old, but you pretty much consider it a given) largely to myself.  I have been consumed by cancer, swallowed whole, lost in the process, fronting up like a robot, time and time again for this procedure, and that injection, and this scan, and that blood test, hooked up to the poison pump 3 weekly, and I am doing all of this against my will.  What do I want?  Well,  I want my life back.

Seeing as this is not going to happen, I have settled on having them help facilitate a peaceful lead up to the the next stage in the surgical process.  I have a couple of months which should in the grand scheme of things be pretty quiet, and I want them to peaceful.  So we have settled on several family therapies, art and music and counselling.  We agreed they will advocate for me at the hospital where I am having my liver surgeries, because the local hospital where I had my bowel surgery twice left me in an intolerable pain situation which started the erosion of my mental health, and has recently seen me start a course of antidepressants in a bid to come to terms with it, and again build some emotional resilience.  I am naturally afraid to go into two very close together surgical procedures that are about as major as you can get, but the memory of waking up from surgery last time with a failed epidural and absolutely no pain relief, and choking on a breathing tube has basically rendered me nearly unable to line up for it….but of course, line up for it I must.  The palliative care nurse has assured me that this situation simply won’t be allowed to happen again, and this in itself has made todays quite confronting admission worth it.

So, that is how today finds me.  Patient of a dedicated surgical team who are pulling out all the stops to keep me alive, and patient of a service whose main business is dealing in death.  It’s a strange place to be, but I plan to be one of the people who makes it out alive.

The Dance

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Recently, I had to take my 10 year old daughter to an “immersion day” at a local high school, where she hopes to attend an accelerated sports program.

This presented something of an emotional challenge to me. At the end of last year, I was diagnosed with stage 4 terminal bowel and liver cancer, and the “best case scenario” for time I would see on this earth did not include walking my eldest daughter into her first day of high school. The best I could hope for was to see her graduate from primary school, and although I could expect to be at the very end of my days, I might be lucky enough to see her frock up, and stand next to her peers, on the cusp of a new life, one that would be exciting, and brimming with possibilities, but also all the angst and pain of the teenage years – difficult years which I would not be beside her to help her navigate through.

In the last few months, the situation has become somewhat more hopeful. I have a brilliant team of surgeons on my side, and have recently embarked on a series of operations with the aiming to prolong, and possibly even save my life. However, I am still left with an odds on chance that none of this will work, and I will still only see two years from diagnosis.

And so, I live my life standing on a small thin wire between hope, like the feeling I got in the high school gym that day – hope that I will be able to see my daughter begin the next stage of her journey, with stars in her eyes; and despair, at the possibility that she will look around at the love and pride on the faces of everyone else’s mums on her first day of high school – and wish that hers was there. Yes, it is a very thin wire, and one that is stretched between two points over a precipice, and sometimes it seems like every minute of every day is a struggle to keep my balance.

Lying in bed some sleepless nights, in those seemingly interminable hours before the darkness becomes the dawn, I have been given to resentment of the happiness that I have known these last few years. Years where I lost an ordinary love, and found a great love. Where side by side we saw four beautiful and long dreamed of daughters into the world, and watched with wonder as they grew, and changed and wove our family more tightly together, and quite frankly gave me a stability and contentment that I never thought I would know. And now, creeping resentment because I wondered why I had been given all this, only to have it taken away. If I wasn’t so happy, would it be easier to face death?

But mostly, I have wondered if I would have done things differently if I had known. Would I have run a million miles in the other direction from the man I adore, if I knew that one day, so soon, I could have to look into his face and say goodbye? Would I have had my four girls, if I had known that one day, so soon, I may leave them without a mother?

And lately, I have decided that I still would have done everything the same. This happiness that has allowed me to embrace life with such gusto these last few years, is the very thing that won’t let me give up on it very easily. While there is still another day to feel a small hand slip into mine, to embrace a good and loving man, to talk to a friend, to turn my face to the sun, I am determined to become ever better at tightrope walking, in the great hope that one day I can plant my feel on solid ground again.

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Garth Brooks said in his song, The Dance, (this has become a bit of a song for my life),

I’m glad I didn’t know,

The way it all would end,

The way it all would go.

Our lives, are better left to chance,

I could have missed the pain,

But I’d have had to miss the dance.

 

I still don’t know how it will end, any more than the rest of us do, but I do know that regardless of this, I would change nothing. Because yes, I could have missed the pain, but I’d have had to miss the dance. And I wouldn’t have missed it for the world.