Tag Archives: Bone Marrow Transplant

Stormy Skies

10 Apr

It’s one of those stormy and unpredictable nights on the Gold Coast, eerie almost.  Perhaps a reflection of my life at the moment as I consider that just as quickly as they roll in, storms fizzle out.  Maybe the thunder and lightning are even Mother Nature’s way of reminding me that powerful, violent fury can and does end, often leaving a beautiful, fresh glow.

I do hope that’s the case with my current situation.

I must point out that I’m not caught up in a terrible bind, I’m just playing with words.  However I do feel like I’ve been at the centre of my own ‘storm’ for a while now and quite frankly, I’d like it to pass.

In trying to bring about an end to a sort of stalemate with my marriage, I’ve decided to collect my two gorgeous girls and take up a room at my Mum’s place (okay – a room & bathroom + parts of her sewing room, kitchen, living, outside area….)  Paul will move elsewhere and we will rent out the apartment for the time being.

Those of you who know me know how ‘house proud’ I am.  More than that though, I truly adore living in this apartment. It’s in a great area, safe, quiet, in an amazing building, with brilliant design.  It’s also a tad luxurious.  This place is special for other reasons too.  I think of it as kind of like an elegant NYC Brownstone – but white!  The entry is through a glamorous lobby and we were lucky enough to secure one of the terrace apartments on the ground floor – so not only is there plenty of room for the girls, but there’s also direct street access.  I can walk across the road to acres of parkland, the riverfront and the ‘magical tree’ I’m so drawn to, or pop over to the banks of the private lake.  I also have a few neighbours I count as friends, who have become a big part of my life.  It’s stunning in design, yet understated in its feel.  The kitchen is just perfect for entertaining (which again, if you know me – you’ll know I love nothing more than having a house full of people to feed and clink glasses with), the bathrooms are fully tiled with beautiful travertine and I’ve decorated accordingly – continuing the earthiness with timber, leather and steel.  We’ve added a really nice black granite circle of life water feature and the timber arbour is playing host to a very healthy wisteria.  I am yet to see it flower in full bloom.

Elegant.  Sophisticated.  Home.

For the eight and-a-half months I was in Brisbane last year, I dreamed about this place. Every single day I willed myself stronger so I could return home.  I can ‘make home’ anywhere, really.  But this little apartment, well, it just feels good.  I love everything about it.  It’s the only home little Phoenix has known, where Lila loves to bail up the delivery guys and where my darling Ch’i took her final breath.

As much as I love this place, I’m not too naive to pin all my hopes on returning. I of course hope I will, but as we all know – a lot can happen in a short space of time.  We’ll just have to wait and see.

There’s heartache and disbelief to deal with first.  The reality has certainly been overwhelming these last few days, as I’ve moved some things to Mum’s, sold others and sent the rest to storage.

The emotions are running high.  It’s devastating to be honest – but I need to try and keep everything in check.  Seriously, the drama of three lots of cancer plus a bone marrow transplant isn’t enough? The destruction of my career, my marriage…and now this.  I’ve had a gut full to be honest.  What I could really do with is a break! This period I am certain, is meant to be THE most amazing, happy time of my life – as I should be celebrating the fact that I HAVE A LIFE! Courtesy of a lot of hard work by a great many people and of course, the generosity of my incredible donor. Instead, there’s more major upheaval as Paul leaves and blames the ‘cancer bubble’.

Well, fuck you cancer.  I don’t need to be around those who can’t deal with you.

Fuck you cancer, I am a grateful soul.

FUCK you cancer, I wake up happy.

 

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Home – but not as I know it.

18 Feb

….And not for too long.

I know this is only a short stay, under two weeks to enjoy the comforts of home and my gorgeous girls Ch’i, Lila and Phoenix Hope (any excuse for more puppy pics!)

  

After assessment by Physio and Occupational Therapists, I’m out of hospital with crutches, rather than a wheelchair, rollator or walker.

Good thing hadn’t planned anything else in the time back on the Coast, as I have been unexpectedly sick.  Unwell to the point where I actually packed my bag for hospital expecting to be re-admitted.  I didn’t feel sick, but all of a sudden was violently ill, repeatedly – for no obvious reason. I had one 24-hour period that is a complete blur of tumbling out of bed to the bathroom, having a ‘few moments’, before crawling back to bed in such a state I could barely believe it. I was heaving nothing, unable to keep a tiny bit of water or electrolytes down (let alone all the medication I have to take) and shaking uncontrollably. Completely exhausted, I willed the day and night to end, so I could catch my breath!

Which brings me to breathing. Ohh such a simple, critical and beautiful life-sustaining act.  Countless times, people have asked how I keep getting back up for the next round of ‘misfortune’ I’ve been dealt. To be completely honest with you, more often than not it comes down to just breathing my way through.  My daily yoga practice (sadly somewhat altered and less-energetic of late) is my most effective coping strategy (okay – that and a slightly warped sense of humour!) How do I not get completely overwhelmed, lose my cool, or drop my bundle?  By choosing to be ‘mindful’ at every opportunity. The term ‘mindfulness’ is quite en vogue, but it’s really just a modern way of describing a behaviour that through the ages and practices such as yoga, Tai Chi and meditation, can be put simply as ‘focusing on the moment’. All sounds a bit ‘new age’ to some, but it’s historical roots can’t be denied. I’m so grateful for my Nana’s influence here.  As very young children she taught us (and thousands of others who attended her yoga classes), to breathe, focus our thoughts, be calm in the decision making process and….breathe.  My deep affinity with this learned behaviour is something that I have continued to seek out in adult life through readings, classes and courses. It is most definitely a skill, an incredibly valuable one that has helped me navigate some pretty tough challenges. Don’t get me wrong – the odd meltdown still occurs, but is usually rather mild and short-lived.

This ‘hip drama’ has pushed me almost to my limit. I can’t quite put my finger on why though. Perhaps it’s a combination of the timing around my 1st birthday (on which all I wanted to do was celebrate being alive!) and the break-up of my marriage, the physical incapacity, loss of recently regained independence, turmoil of major surgery and all that entails (twice over!)…..not to gloss over the PAIN. My goodness, the intense bone-crushing pain, the searing nerve pain, the all-over hurt my body is experiencing is unrelenting. I’m on a cocktail of pain relief medication courtesy of the Palliative Care and Pain Management experts. Keeping on top of it is so tiring and the drugs are not without their own side-effects. As Pink once sang “……morpheine is making me itch!”

Soon, I’ll have a new left hip, made from a combination of steel, ceramic and plastic.  Soon after that surgery, the team will do it all again for my right side.

Time to get back on my feet. 

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5 C

30 May

I could write a book on this experience (and one day I just might), for now – I’m exhausted, but needing to try and ‘collate’ the four and-a-half months I’ve had in Ward 5C getting ready for and having my unrelated anonymous donor Bone Marrow Transplant.

The chemotherapy regime I’ve been on this time in preparation for transplant is FLAG: FLudarabine, High-dose Cytarabine (Ara-C) and Granulocyte colony-stimulating factor (G-CSF).

There’s been some horrible experiences and some hilarious.

I’ve had fluid on my lungs, pneumonia, and felt like I was drowning in my own body.  I’ve needed breathing assistance, suffered the humiliation of incontinence and worn an adult nappy.  I was moved to ‘Room 1’ which is pretty much the last stop before people check out – permanently.  Those nights the ICU Doctors came to see me.  I didn’t want to be moved to ICU, I felt safe in 5C, they were experts at looking after transplant patients.  It was certainly a challenging time.

There have been no less than five occasions where one of my treating team has stood at the side of my bed and delicately explained that I ‘might not make it through the next 24-hours’, so if I needed to say anything important, now was the time to have those conversations.  Thankfully, I’d prepared Mum and Paul for this likelihood and they were comfortably aware of my ‘final wishes’.

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Some of the drugs made me hallucinate. I was watching lavender grow from the ceiling and seeing faces in the bare white painted walls. I was talking to people who weren’t there. I was texting Mum saying I know she’s in the corridor outside taking about me and to just get her gown and mask on and come in.  Mum was at work – on the Gold Coast!

Who knows what I was saying to the Drs and nurses during this time.

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I did have a bit of respite a couple of times, staying in a unit nearby where I got to sleep uninterrupted (no obs or beeping machines), and eat what I wanted – which unlinke my pre-chemo diet was really unhealthy – chips, pre-prepared frozen meals etc.

Before too long though I was headed back to hospital.  A few times I woke in the early hours with spontaneous vomiting and a dangerously high fever.  Going through the Emergency Department was necessary – but so exhausting.  They had to take blood from my line, as well as two peripheral sites which means more needle sticks.  I’m trying to avoid any unecessary processes on my arms, as I’ve had lymph nodes removed from both sides as part of my breast cancer treatment and am therefore at greater risk of developing lymphodema – an irreversible, painful swelling of the arm.  So, I have my blood pressure taken on my leg and try to avoid those extra needle sticks when I can.

Not a fan of confrontation, I struggled with some of the side effects of certain medication.  Some made me quite agitated and I found myself fighting with people. Most of the time I caught myself and was able to stop, but there was one particularly awful exchange with my beautiful nurse Lettie.  We’re friends now, but when she found me crawling on the floor looking under the bed for my little dogs Ch’i and Lila things turned ugly very quickly.  I was crazy out of my mind on Ketamine (I can not believe people take this as a ‘party drug’!) and didn’t like her telling me to go back to bed, that she’d spoken to Paul and the girls were okay.  It was a little white lie that didn’t work.  I got right up in her face and told her as much.  Paul almost got a phone call at 3am!  It took the amazing Pete to resolve the impasse.  Boy was I pissed though.

Then there was the ‘incident’ with my central line.  Again, I blame the drugs.  I’m convinced I tried to get out of bed to go to the loo and tripped over the pole, accidentally getting caught up in all the tubes and dislodging the central line as I fell to the floor.  Others argue I ripped it out of my neck/chest, then as I bled, tried to stem the flow and clean myself up by using rolls of paper towel!  I honestly do not know.  What I do know is my nurse Tash yelled quite loudly as she entered the room ‘ Kate! it’s a fucking blood bath in here!!’.  It was, not only was I bleeding a lot (especially with extremely low platelets), I’d also snapped the food line, so there was stinky, sticky white glue-like fluid mixed in with the blood all over the floor.  There was so much it had spread through to the bathroom and when Tash and another nurse Ness started the clean-up we could hear their shoes squelching through the mess!  After making sure I was okay, Tash sat me on the end of the bed and told me not to move.  She tells the story much better.  This one will go down in history.  Dr Katherine came to remove part of the line still hanging from my chest.  I had surgery the following day to insert another line.

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Breaking down

Sweets Syndrome, Mucositis and central line yanked, then properly removed.

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Some of the complications I’ve experienced include CMV, Sweets Syndrome, Graft Versus Host Disease (GVHD) of my skin and gut and cataract.  More detail on them some other time.  Namaste.

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ROLLER COASTER OF THIS REALITY

12 Aug

So I’m back on the roller coaster of fortnightly monitoring through blood tests. I’m gaining a whole new education as I learn about blood cancer and the definitive factors which will impact upon my care – the importance of numbers of red blood cells, white blood cells, platelets etc.

Through how I was feeling physically, the fatigue, the shortness of breath, the extreme bruising plus this new understanding of regular blood tests – I could tell things were sliding and quickly.

My last appointment with Dr Kennedy backed this up.  I’d shown a marked decline in the last 2.5 months of records and he felt we should be aiming for transplant prior to Christmas. WHOAH…….. This was a shock for my family and I.  It appears I was a whole lot sicker than any of us realised.

He indicated if there was anything I desperately wanted to do, that it was a good idea to do it now, as it’d be a while before I was well enough. My first question was to ask if we could wait until after Christmas as my little brother David was getting married and it would be odd for the family if I wasn’t there.  The answer was ‘on this current trajectory Kate, you probably can’t hold on’.

Next – I asked if I could squeese a trip to New York in, in between my fortnightly bloods.  The answer was an emphatic yes!  So long as I went soon. Dr K said it was the best medical advice he could give and that I should experience the Empire State building at night.

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BONE MARROW/STEM CELL TRANSPLANT UNIT

22 Jul

First visit to the Bone Marrow/Stem Cell Transplant Unit at the Royal Brisbane Women’s Hospital (about an hour from home on the Gold Coast) was a rude shock.  The sight of multiple, massive waiting rooms full of sick people smacked me in the face like an icy breeze and I wanted to run.  It’s not been so long since I was one of those people and I’d hoped my time as such was done.

I’d been referred to Associate Professor Dr Glen Kennedy.  Luckily for me, a man I could be very direct with and enjoyed an instant rapport. He understood my ‘need to know’ and that taking the softly softly approach was not necessary – a great start given we’re talking about life and death.

I was not surprised when he delivered statistics giving me a survival time frame of somewhere between 3-9 years if my MDS was left untreated.  Learning how quickly this disease could progress to Acute Myeloid Leukaemia was troubling and my gut instinct was quietly screaming ‘pay attention Kate, this may be the path you’re headed along’.  I chose to keep that to myself.

The consultation finished with some wise words and a very strong take home message from Dr K – ‘You will see a transplant in your lifetime Kate, you won’t survive without one.’

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