On normality

I've been wanting to write this post for a while now but I've been too busy. Busy being normal.

From about Week 18 of my pregnancy, once the morning sickness finished and I could eat enough to get some energy and my blood pressure came up enough that I didn't feel like passing out after 10 steps, life has been resoundingly normal. And it is fucking awesome. 

I had forgotten what normal was like. Normal is going to work and not coming home exhausted. 

Normal is not needing two rest days to get through the week. 

Normal is being able to go out both days on the weekend and not feel shattered. 

Normal is feeling happy pretty much every day, instead of just when I've had enough rest. 

Normal is amazing. 

Being off my leukaemia drugs because they're unsafe to the baby has shown me just how much I've had to change my lifestyle and that what I thought of as normal really truly isn't. The 'new normal' is often talked about amongst the dealing with CML or liver transplant circles and it's taken this medication break to realise just how true that is. You feel pretty shit when you first start the medication. Lots of side effects and thing to make you feel awful. Then when that wears off after a month or half a year or however long it takes you start to think you're getting back to almost, but not quite, normal. It's amazing how quickly the brain can adjust to the new energy levels and while you know you used to be able to do more with your days you just accept it as a change. 

I've embraced every minute of normality while it's returned to me. It's so precious. I know MR enjoys having the true old me back as well. I joke about staying pregnant forever. Just second trimester though. 

Normal is beginning to come to end. A few weeks ago my feet started to swell, then my ankles and calves. Then my fingers and hands. And while I'm still enjoying the energy, I'm starting to get a bit more tired and a lot more uncomfortable, mainly in my feet and hands. My blood pressure is fine so that's good but I'm on close monitoring now due to the higher risk of pre eclampsia in someone who's had a liver transplant. Close monitoring involves lots of trips to Perth and back which are starting to get wearying and it's likely I'll have to stay down there soon, even though I'm only 31 weeks. 

My leukaemia cell levels have started to rise too, which of course is expected when I'm not on the medication. I've never actually reached 0, only getting down to about 0.027 (which is nothing you say but while there's a trace its risky to go off the meds) and it's now back up to 0.8. It needs to stay under 1 while off meds to keep the risk of it getting serious as low as possible. So I'll be back on the medication sooner rather than later. 

I've started to grieve a little bit in advance of losing myself again, it's been so nice to be back to normal. There's always that lingering hope for the miracle that it might just disappear. 

I'm also a bit worried about how I'll cope with recovering physically from birth, dealing with the sleep deprivation of having a newborn and having to go through all the side effects of the meds again and the fatigue it causes. It's not that I didn't know I'd have to go back on it after giving birth, it was that I'd forgotten what it was like to have regular energy levels. 

Regular energy levels are amazing people. Never take them for granted. 

And just so you're not feeling depressed by my post, here's a photo of my big fat baby at 29 weeks who is measuring on the 90th percentile and looking very healthy. It's all worth it. 

Run for a Reason 2014

This will be my third year entering the HBF Run for a Reason.  My sister and I have got ourselves fitbits and are trying to be inspired to get out there, get training and get a bit fitter and hopefully knock a big chunk of time off last year's effort of 37 minutes 21 seconds (for 4kms).

If you have a few spare gold coins lying around and can see your way to sending them my way, I would be ever so very appreciative! 

https://hbfrun2014.everydayhero.com/au/megan

Conquered... hopefully

It's Week 2 of Term 4 and I haven't (yet) gotten sick.  It's a miracle!  The last 3 terms have seen me sick every Week 2. Twice in hospital and once just at home.  I'm so pleased.  Now to just hold out and not get sick at all for the rest of this week and then for the rest of the term.

Because of my terrible past history I've only just signed up to go to this Light the Night walk in Bruce Rock.  I was away in New Zealand for the Perth event and MR's Mum has kindly organised this one in MR's home town.  Isn't she a champion?

For those not in the know, I have Chronic Myeloid Leukaemia.  This type of leukaemia is the one that is closest to having a cure found for it.  Currently, there are these 'wonder drugs' that mean we (usually) don't need chemo or a bone marrow transplant.  I am lucky enough that I can take these tablets and have a good quality of life.  I work three days a week due to fatigue issues but apart from a few aches now and again and a reduced immune level I am all good.  Many people suffering from blood cancers are not so lucky however and every dollar you can spare goes towards finding cures for Leukaemia, Lymphoma, Myeloma and other types of blood cancers.

So, you have exactly two days to generously dig deep for some loose change (or your credit card) and donate to my cause right here.  You could donate just $5 - like I said, every dollar really does help (and is tax deductible).

Thanks so much in advance!

Two

Today my liver turns two. 

Two years since that precious gift from an unknown young man. 

I think about him and his family as I make my traditional anniversary cupcakes. Raspberry, Apple and Cinnamon this time. Do they do something each year in remembrance of him? Or does it pass quietly, individually, retrospectively?  I feel he should be celebrated. But I understand if they are not ready yet.  

I've just gotten back from my first overseas holiday post transplant.  New Zealand.  A place I would never have had a chance to experience if not for the generosity of an anonymous family.  So many experiences I've had in the last two years and so many moments to come that I owe to them.

How do you say thank you for something like that?

Unfortunately, my leukaemia disallows me from donating organs or blood.  But if you are allowed to, you should consider becoming an organ donor or a blood donor.  There are so many people in need and it is such a amazing gift to be able to give.

Last week I wore a bikini for the first time since surgery.  My scar is still there but it is now just a part of me, I often forget it is there. Parts of it have faded a lot, parts are still pink. I don't mind. Oddly, I am less self conscious of my stomach now than I have ever been.  I'll have to take another photo soon for the records and compare.

Looking forward

Right now there's lots of good stuff to be looking forward to and about.  Both event wise and life moments.

I saw my haematologist today and my Leukaemia cells are at their lowest ever.  Last month they were at 0.057 and this month they are at 0.022 which is an excellent drop for a one month period.  My next test is in three months time now so I've got my fingers crossed I'll get another zero on the right side of that point mark.  Either way, I'm feeling very positive right now!

There's two days left of Kindy until I'm on school holidays.

I'm heading to MRs home town this weekend for a bit of time with him and his family.  He had his first week of work at home and enjoyed being busy and working with the tools again after being office-bound management for quite a while on the mines.

On the weekend there will be some quilt finishing by me and some quilt starting by MR's Mum who is making us a quilt which I think I have finally finished selecting fabrics for.

I've made plans with four friends for four different catch ups over the holidays.  Movies and lunches and afternoon teas.  And hopefully I'll manage to fit in a few more catch ups along the way.

And super exciting, we had some work done on the house this weekend just been.  It's not entirely finished so no photos yet.  The workman is back tomorrow to finish it off and I can't wait to show you what we have had done.  I am so pleased with it and it is our first big change to the place since moving in two years and three months ago.  What a long time we took to get to this point!!


Have you got some lovely things on the horizon? 

New Zealand?

There are tentative plans in our household for a visit to New Zealand during the October school holidays.  'Fabulous!' you think.  What fun to plan.  But unfortunately, at this point we are a little bit stuck on actually being able to go part of the planning phase.

You see, when you have Leukaemia and an addition dose of a liver transplant, travel insurance companies seem inclined to laugh in your face when you suggest maybe they could insure you.

Rude, I know.

I've looked at a few places so far and they have a list of medical conditions that exclude you from getting travel insurance and whilst Leukaemia hasn't been on any of them, an organ transplant is. 

Thankfully, there is an organisation called Transplant Australia, of which I am a member.  They hold the Transplant Games (fun Olympic like games for transplantees) and there is a World Transplant Games which requires transplantees to travel somewhere in the world for the games.  Of course, they will need travel insurance for such a thing and so Transplant Australia has partnered with a company that will (in most cases) provide it. (AIG Travel Insurance for anyone interested)  Phew!

I rang them today and now need to get multiple medical forms and letters from my specialists stating my conditions and the status of said conditions and then I get to fax them off and then ring to talk to the insurance company's medical team to do an assessment of whether or not I can be insured.

And then, if they decide they will insure me, we will be able to get on with booking flights and planning our adventures.

So fingers crossed.

And, where would you suggest I visit if we do get to go?  I'm thinking awesome crafty places, cool shops and lots of nature places. 

We'll be going for 10 days with probably 6 in north island (MR has lots of family there) and 4 in south.  Already on our list is glow worm caves, natural hot pools, a big flying fox and a bit of snow and lots of green.  If they let us go at all...

Falling by the wayside

A lot of things have been neglected in my world of late.  The blog, the kitchen, the tidiness of the house, friends and poor MR.

In fact, the only thing that hasn't been neglected has been my bed.  No more are the nights awake until 2 or 3am.  Now I am in bed and asleep by 11 most nights.  Sometimes even 10 or 9pm!  Unheard of, I know.  There has also been afternoon napping which hasn't at all affected my night time sleeping.

Starting back at work has been partly to blame, we're up to Week 8 of an 11 week term and Term 1 with Kindy kids is pretty full on.  I must admit though, I've got a really lovely group who are pretty independent and self sufficient for 3 and 4 year olds.  Three days of work a week is Most Definitely enough for me though, even with having a three day weekend and a day off on Tuesday I'm finding that if I do too much on the weekend I barely cope for the week.

Along with that I've had a week in hospital with a particularly nasty tummy bug back in Week 2 of term and I had Monday off this week with another one which was thankfully only a smidgeon as bad and managed to go away by itself. 

In much better and fun news, there has also been two weddings in the last two weekends.  MR's brother last weekend and the one before than his cousin (which also included a quick weekend holiday to Dunsborough for the event).  They have most definitely contributed to all the aforementioned neglected-ness.

Possibly the biggest culprit, although it is very hard to measure, is the increase of my Leukaemia medication five weeks ago.  It wasn't working as well as it should be and seeing as I was only on half of the recommended dose due to some issues with medication interactions and differing heart rhythms on ECG checks, they decided to put it up a bit higher.  I'm now on an almost 3/4 dose - 70mg of the recommended 100mg.  It's interesting how (in my mind anyhow), when I say I'm tired it somehow seems more lazy and slack than if I was to say I suffer from fatigue as a side effect from medication.  "Tired" is such a hard thing to measure.  I know that I am more tired than I was last year however, as I wasn't working this is not a good comparison.  I also know I wasn't this tired when I wasn't ill and was working full time and playing netball on weekends so therefore in my books that becomes "fatigue". 

After having a big sook the other night about how slack I have been at doing anything at all around the house lately and how everything is messy, how I am practically existing on fish fingers and a bit of salad for dinner when MR is away and when he is home he is in charge of all kitchen duties, how I am possibly the worst girlfriend ever and how MR should move on to happier and healthier pastures, I realised I needed to get over myself and sort my shit out.

I decided to reinstate my Twenty Minute Tidy sessions.  Once each day I do work and twice on days I don't will give me 2 hours and 40 minutes per week in which to tidy, clean and organise the house and garden.  My big goal right now is to do a bit more than than on the Easter weekend and get the house tidied up enough that I can get a new cleaner (our last one finished late last year), which will then decrease my stressing over a dirty house at least, if not a messy unorganised one. 

I've had two sessions so far.  The oven timer goes on for 20 minutes and off I go to work until it beeps.  After it beeps I dismiss all feelings of guilt over the state of the house and my lack of housewife skills.  I've unpacked and put away my case from my Dunsborough weekend a fortnight ago, picked up and put away all the clothes and other associated crap dumped on the bedroom floor, tidied out one drawer of my tallboy and tidied up and cleaned the bathroom basin.  Not bad for 40 minutes.  Today being a non work day, I'm doing 40 minutes - most likely in two 20 minute sessions.  I'm feeling better about it all already. 

Now I just need to work out some really quick and easy meals that do not involve fish fingers...

Best laid plans

Today was my first at home day where I didn't need to go anywhere in almost two weeks.  This is the longest stretch of 'stuff' I have been busy with since before my transplant so I was looking forward to a bit of relaxing in the morning and a lot of productivity in the arvo, with a big long list of things to do.  I even set my alarm for 9am.

Unfortunately, I didn't sleep very well, waking up in the early hours with bone aches in my arm.  Bone aches seem to be one of the few side effects I get from my leukaemia medication.  They feel a lot like those weird 'growing pains' you get as a child.  I shouldn't complain - I only get them every now and again and I know some people who get them regularly.  

So instead I snoozed until midday, had a lazy brunch of grainy toast with homemade jam and a banana smoothie and proceeded to spend half of the afternoon slothing around until my arm stopped hurting enough to do a few things.

Smoothies make everything better.  I've been a bit obsessed with banana smoothies since I've been able to drink milk again.  My favourite concoction involves two Carnarvon bananas (the sweet little lunchbox variety), a pot of vanilla yoghurt, a small handful of rolled oats, sometimes a spoon of honey, milk and a few icecubes blended together.  Yummo.

What's your favourite recipe?  I'm thinking smoothies are going to feature strongly in my diet this summer so I need some more tasty recipes!

When I'm feeling a bit woeful or too sore/tired for some craft it's time for rereading a favourite series.  Escape my world for a bit.  Have you read this series?  His Dark Materials by Philip Pullman. I think this is about the sixth or seventh time I've read these now.  You might have seen the first one at the movies, although it is that different from the book I almost didn't recognise it.  The movie is called The Golden Compass.  They haven't made a movie of the second two at this point.  I've never really read a series like it, it deals a lot with religion, but not in the traditional sense.  The story is set in a world similar yet different to ours and deals with other worlds as well.  It follows the life of a girl, Lyra Belacqua, who is destined to play a major part in the survival of the worlds.  If you do read it, a bit of a heads up - there's plenty of teary bits, particularly in the third book.  I'm dreadful at reviews so google one up if you want to know more about it. 

Are you a rereader?  I reread a few of my favourite each year.  I always get really involved in the stories so it's like visiting old friends. 

Thank goodness I have a quiet weekend ahead of me, plenty of time to get that big list of stuff done!

  

Nine months

My nine month liversary has been and gone, ten days ago in fact.  No cake baking this time, I was feeling a little bit slack.  But I did take the next scar photo in my series. 

one month, six months, nine months

 As you can see, you can hardly see the staple dots at all now, they are quite white.  A lot of the rest of the scar has faded some more as well.  I've also put on a few kilos.  Boo to that part!

I had a bit of a brain wave last night at the ungodly hour of 2am while I was beginning to drift off to sleep.  I've been thinking about what to do to celebrate my one year liversary and the idea of a cake decorating party popped in.  That could be fun perhaps.  Or I could just go the good old bbq.  The idea of celebrating my new liver with alcohol has some irony but everyone else can do that part for me.  My liversary comes exactly one week before MR's birthday though which does make it a bit difficult.  I don't know that I need a big celebration every year but I definitely want one for the first year! After the first year has passed the survival rate rises rapidly.  I like that!

In other health updating news, my latest leukaemia blood test shows that the levels have dropped from 1.77% to 0.084% since the last test three weeks before.  This is especially excellent news!!! That's the lowest it has ever been since diagnosis, so I'm very happy.  If it keeps up at this rate I'll be down to 0 before you know it... (touch wood)  It usually slows down a fair bit once it gets to the 1% and under mark so for it to drop that much in three weeks is pretty amazing. 

I started back at work yesterday and it went really well.  I got a bit sore during the day sitting down and leaning forward to write and while I was pretty tired afterwards and slept in til 11 today I didn't actually feel too tired while I was there.  Yesterday was a professional development day - no kids - so tomorrow is the real test, my first day with kids.  My side feels fine today so that is good, I imagine tomorrow it's going to get a bit more sore, what with all the getting up and down off the mat.  It will ten months since I stopped working this Thursday, can't believe I was off for so long.  It sure went quick but I am definitely glad to be getting back into normal life habits again. 

 

Sunday snippets

I'm joining in Sunday Snippets for the first time today after finally getting my Instagram act together.  I've had it for ages, just hadn't used it much or added friends or anything.  So if you want another friend, I'm threadsofhappiness, please add me so I don't feel like a total loner and have more procrastination material!

razor claws kneading my belly :: Sunday brekkie with Dad :: starting to get the hang of this knitting caper :: the face of bliss while kneading my belly :: market fare :: the neighbour's cat, Princess is Nissa's long lost twin cousin :: first of the tulip bulbs :: Winter dwarf tea rose flowers :: learning the ins and outs of pruning rose with Mum

I spent a few hours each day this weekend outside in the garden.  On Saturday, Mum came over and we did some big pruning for the green waste collection and she taught me the tricks of pruning my roses.  She also helped me work out what I was doing wrong with my rib stitch knitting I was trying to do.  Sunday, Dad came around and we went to the Wanneroo Markets (thanks for the recommendation Sally!) for some breakfast and fruit and veggies and then we planted some ground cover seedlings and I did a bit of weeding and tidying up the garden as well.  This weekend has been glorious sunny Winter weather, one of my favourite types of weather for being outside in.  I'm a bit pooped now though, after four nights in a row not getting to bed/sleep before 3am I'm really hoping I'll be ready for a midnighter tonight!

I'm heading back to work next term too, just on Wednesdays to begin with and I'll see how I go.  I'm looking forward to a bit of normality!  Also in the plans for July is getting back on the exercise horse.  I managed my 3 times a week for the whole of April but May and June were pretty bloody slack so I need to get motivated again.  Starting tomorrow with getting up early enough to make it to Liver Gym at 10am.  That means leaving home at just after 9.  It's gonna be tough so wish me luck!

Also on the cards is a birthday holiday for me.  After we didn't make it down south back in May, MR and I discussed that maybe we could go over east for my birthday present.  We've decided on Cairns so I've got to chat to the doctors this week to make sure they have no problems with me flying.  I've got my fingers crossed tight!

And finally in my mish mash of news, I found out that my leukaemia levels are doing good things again, down from 23.4% to 1.77% in just one fortnight!  Such a nice phone call to get!!




What did you get up to this weekend?  I hope you had some lovely sunny weather wherever you were as well :)

One day...

I've never really been a particularly big risk taker.  I don't really like doing potentially dangerous or painful stuff and anything that is likely to scare me is just out of the question.  But there's always been the option of doing it if I so changed my mind and decided to.

Similarly, I never quite got around to traveling the world, living and working overseas or doing anything like that either.  I did a fair bit of travel as a child but as an adult, I haven't been overseas by myself or with a friend, only with my dad and sister.  Saving is not my forte.

I am however, quite good at daydreaming and making plans.  Wild, crazy plans that don't ever really come into fruition.  Or even just big plans, that aren't really wild or crazy, just involve a lot of work.  It's the procrastinator in me.

There's always the thought of 'one day'. 

When I was in high school it was 'One day I'll be a famous fashion designer or a famous author.'

When I was at uni it was 'One day I'll save up and go and work overseas for a couple of years.'

When I started work it was 'One day I'll save lots of money and build a nice home.' and 'One day I'll go on a big overseas holiday.'  

And of course there were many small things in between.

One day I'll get my motorbike license.
One day I'll go skydiving.
One day I'll get my ears re-pierced (after they closed up)
One day, when I decide what to get and where, I'll get a tattoo.

You know, small things that you think that you could really do at any old time.  Until you become immunosuppressed with a new liver.  And then you think, should I realllllllllly be doing those things?

Yes, it's my life and I can make the decisions I want, but I don't feel like it is quite just my life anymore.  I'm not quite living for two but I feel that taking unnecessary risks is a bit careless and disrespectful.  Like riding a motorbike or skydiving.  Like putting holes in my body when my immune system is compromised and I will always be at risk of infection and always heal slower than everyone else.  I feel like I need to make something of my life.  Be useful, do good things - not just everyday good things, but big helping-lots-of-people good things.  I need to do something to deserve my new liver.

I can't imagine myself ever going to Bali, Africa, India or any third world country without feeling completely paranoid about germs, infections and dodgy food.  I already feel somewhat paranoid about dodgy food in my own house and the thought of germs when I go back to work next term seriously gives me the willies.  Now, if I'm completely honest, I never really wanted to go to any of those places anyhow because I am a very fussy eater and a wuss but now that I not-quite-can't-but-really-it's-so-risky-I-shouldn't, I have that childlike tendency creeping around my mind thinking I'm gonna do it just coz they said no.  I just can't help it.

I've been thinking of all the things I'm glad I did before I got ill and needed a transplant...

Like paintballing.  Paintballing is probably not very good or safe for relatively new livers and sensitive scars.

And climbing the Gloucester Tree all the way to its 72m tall top, by myself.  Unnecessary risktaking.

Getting my tongue pierced, also all by myself because no one thought I would do it so I wanted to prove them wrong.  Germs and infections.

Going for a ride on the back of a dirt bike over jumps, probably my biggest adrenaline rush ever.  More unnecessary risktaking.

Going to Thailand and riding an elephant through the jungle on the back of its neck.  Germs, infections and dodgy food.


Five things.  There might be more, but nothing is springing to mind currently.  Five risktaking adventures is not really very many and I'm a bit sad about that.  Not quite regretful, just like that era of my life has passed.  I'm sure that there will be many more adventures to come in my life.  And really, a liver transplant is quite a risk taking, germ and infection filled adventure in itself I suppose, just not one I would have had on my list of things to have a go at...
  



What are your 'One day' things or things you look back on and are glad you tried them?
 

 

Draining away

I swear I am going to run out of blood any day now. Today marks blood test day #12 in a row and even though its a Sunday and I'm busy doing Run for a Reason tomorrow morning, I still have to go in afterwards for tests. I try to make it all better by thinking it is better than being stuck in hospital the whole time and also by indulging a bit today and last Saturday with brekkie in Subi out in the sunshine. After all, if I have to go to the hospital on the weekend, why not stop at the fruit and veggie markets and a cafe?


You can help make me feel even better with a last minute donation to my fundraising page for the run tomorrow. The run that I am walking. 4kms and all the money I've raised is going to Transplant Australia. About $1300, or more if you can help? I'd put up links but I'm on my iPhone because I am still laptopless and MR has gone back to work with his. Luckily there is a little button just over there to the right in the sidebar which will take you straight there!!

I didn't end up making it down south unfortunately, had to go in and have an ultrasound and a liver biopsy on the day we were planning on leaving instead, joy of all joys. Hopefully next month. My medications are having a little gang war against each other and not doing quite what they were expected to and it's all just loads of fun and games in my body at the mo! It is improving though, just not quite at the point where I can have a day off blood tests yet.

drip,

drip,


drip,



drip....

Big hopes

Do you have big hopes for something? Something big? Or even big hopes for something little?

At the moment, my big hopes revolve around a trip down south this weekend with MR.  We haven't been away anywhere since January last year (not that long I know) before I got ill.  But a Whole Lot Of Shit has happened since then so it really feels like For-Eeeeeeeee-Ver.  And a weekend away is really just what we need.

Unfortunately, my liver is being a Super Poohead.  It seriously has some whinging issues.  Noooo, I don't want those drugs, I'm going to sulk seems to be its fairly constant cry.  They had to take me off the antifungal drugs a few months early because my liver just wasn't coping.  And now I've started on my leukaemia drugs and it is having quite a similar whinge.  Now, I know I really shouldn't complain because my liver is doing enough for both of us this liver saved my life.  I know.  I am Really Truly Grateful.  Even though I do sound a bit ungrateful, I'm not.  Just venting.  But I would just like a bit of a break from elevated liver function tests and blood tests.  In the past 4 weeks I have had 16 blood tests.  Two weeks of Mon-Fri tests and two weeks of three times a week tests.  I am tired of blood tests.  My veins are Very Tired of blood tests.  I managed to convince the doctors that this week I only needed tests three times rather than five, even though my ALT (which for those of you not in the know yet is part of the liver function tests and should be below 35) doubled over the weekend from 71 to 141.  Doubling is not good.  I am nervous about tomorrow's blood test results.

The lack of stability and forward planning options are starting to get to me.  I want to book our favourite bed and breakfast place in Dunsborough, Newberry Manor, but on the weekend I thought, no I should just wait and see what the doctors say on Monday at my appointments and see what the blood test results are.  And then after talking to them on Monday, now I have to wait and see what Wednesday's results are before booking.  And then depending on what they say then I will have to wait until Friday's and we want to go down south on Friday straight after my morning blood test.

*sigh*



In good news however, because life is not all woe is me, my income protection money finally kicked in, only 7 months after I stopped working (but we won't go there), and I got a big lump sum back pay.  Lovely.  I also got told I could finish up on two of my medications so now I am down to 8 tablets in the morning and 7 at night, seems like so few - oh how times change!  I got free tickets to the West Australia Ballet for tomorrow through the Leukaemia Foundation, although it is a lunchtime show so I am going solo as I couldn't find anyone interested and free at that time.  And in particularly good news, my new leukaemia meds haven't caused any nausea (touch wood) and while I have been waking up with a headache every morning and puffy eyes, those side effects are manageable and the fatigue side of things hasn't been too bad either.  I've also started doing a bit of babysitting/tutoring once a week for a few hours with a 3 year old boy who has some speech delays.  Right up my alley! So it has been nice hanging with kids again and planning some ideas and using my brain in a workish sort of way.  Providing everything is stable I'll be heading back to work next term, just one day a week to start off with and then if I feel up to it I'll put my name down for relief.  


So fingers crossed for tomorrow's blood test results.  Big hopes there too.

Moments in time

It was my blog's first birthday a week ago today and I completely forgot about it.  Poor little blog! My mind has been busy consumed with other dates and events.  A housewarming party, my sister's birthday, numerous doctors appointments, and two very other significant dates.

Firstly, yesterday it was MR's and my first anniversary of moving into our new home together.  So hard to believe we've been here a year, it feels like so much longer and yet so much shorter at the same time. The house looks much the same as when we bought it, we haven't done any renovations or painted it or changed the gardens majorly.  Hopefully now that MR is home for two weeks at a time there might be a bit more time for handyman jobs, which he is very good at! We need new gutters and I think that might be the first Big Job.  They are a yukky reddybrown colour at the moment and I do not like it one bit.  I want a nice dusky blue colour.  And then after he has done that I can have a go at painting all the decorative bits outside that are that yukky colour the nice dusky blue colour.  That seems like a job I could manage.  But before we do any of that, we need to buy a ladder!

Like the blue around the window and under the roof, but certainly not the copper gutters!

The second significant date is tomorrow.  A year ago tomorrow I was diagnosed with leukaemia.  I had a big cry last week when MR was home about the unfairness of life and how nice it would be if it never happened because if that never happened then I would have never needed a liver transplant.  The I Wish Beast struck big time as I thought about all the things we could have done to the house with the extra money we would have had with me working and healthy and MR not having to take all that time off to look after me.  I felt like I was grieving for the old me, because I am now so different from the person I used to be.

I feel like I have been dunked in a bowl full of medical jargon and come out overflowing with terms I had never heard of before but now are everyday; medication names, blood test terms, which vials they need to take blood in for each test, what tests need to be done even though the doctor forgot to put it on the blood test form.  I know the phlebotomists by name.  And I also now know what phlebotomist means.  Words with funny letter combinations that used to sound clunky now roll off my tongue with ease - imatinib, dasatinib, encephalopathy, phlebotomist, endocrinologist, azathrioprine, pretty much all my medications really.  Numbers pour out of my ears, relating to levels of liver function, kidney function, adrenal gland function, lung function, percentages of leukaemia in my body.  They change so regularly it is hard to keep track.  I should write them down, or make a spreadsheet to keep track of it all.  But that would be organised, and I am not!

Now when people say 'how are you?' I wonder if they are asking for the 'good/fine/not bad' response or if they are looking for the medical details of how I am.  How is my liver? How are my kidneys? How are my lungs? How is the leukaemia? It's not that I mind if they are asking about my health, that is fine and I am happy to share and explain all the big clunky sounding words to them, it's just another social uncertainty to add to my list.

I was hoping MR would be home for tomorrow so we could go do something fun to take my mind off it all but he isn't so instead I have invited Sarah around for a sewing afternoon.  Can't mope while you're sewing!

Out of hospital and health update

  
I'm out of hospital, they let me out yesterday, a day earlier than I was expecting!  Super yay!

I've got some new drugs to try and help my lungs, as they have gotten no better and a little bit worse in the month since I started treatment for them and if the drugs don't begin to work in the three weeks before my next check up with the pulminary docs they want me back in for some IV treatment.  So fingers crossed big time there!! I am planning to not be back in hospital Any Time Soon.  I can now also add endocrinologists to the gamut of specialists dealing with my case as the tests they ran show my adrenal glands are working and yet my cortisol is low so my hepatology docs want to consult with them to decide what to do about it.  Also, my BCR-ABL results (leukaemia concentration in blood) have come back from the February tests and show they have risen a little bit, from 5.6 to 8.8%  Not good, but not toooooo bad either.  My haemotologist said she wants to see two spikes in my levels before she needs to put me back on meds but they want to get the lungs and the adrenal glands sorted out first anyhow.  My liver count is finally back under 35 (where it is meant to be) after over a month, very excited about that and my kidneys are almost back to normal too.  They are attributing their rise in numbers to a mixture of my immunosuppressant and antifungal medications so they have lowered the immunosuppresants slightly while I get over all these stupid fungal and bacterial infections.

And that's the latest in my health news.  Ahh, I miss the days where I could wrap up health news in a sentence.  Oh, I had a cold last week but I'm better now. If only.  Now I just sound like a contender for the World's Biggest Hypochondriac.  Please God, don't let that become a new reality TV show. 

Anyhow, just a quick post from me today, I'll probably be absent for a few days because I have a housewarming party to organise and hold - whee! It certainly won't be anything like the spectacular parties I see hosted on some of your blogs.  I am making a coleslaw, a potato bake and perhaps a plate or two of nibbles.  MR is in charge of BBQ duties with whoever else that volunteers on the day and I have had six very kind and helpful people offer to bring more salads for me.  I am trying to be very casual and not my usual crazy over-catering self who thinks of lots of yummy things she could make that take many hours of preparation.  There will be no bunting, no rainbow cakes, no fancy colour themes, no themes at all for that matter.  Just a typical run of the mill Aussie BBQ.  And that is fine by me.  It will just be nice to spend time with friends and family.  MR's parents are coming down Saturday night and my Mum is coming around a bit early on Sunday to help us to get everything organised without me getting worn out.  And then all I have to stress over is making sure all our different groups of friends interact and no one gets left feeling lonely!

Looking forward to catching up on everyone's blogs when I'm back. x




A Year of Good Things
73/366 ::For Transplant Australia::
My Run for a Reason fundraiser page reached and passed it's target of $1000, I'm now up to $1045, two whole months before the event! Time for a target raising!  Thanks to those bloggy people who have donated, you know who you are!! 

74/366 ::For me::
Out of hospital on my liver's five month anniversary - yay!

75/366 ::For my meow::
Lots of cuddles and attention after being left alone (the neighbour fed her) for 3 days and 2 nights

Happy Liversary

Today, or rather yesterday seeing as it's after midnight, my liver had its three month birthday.  It felt like it should be a somewhat momentus occasion, except it wasn't.  MR being away and me staying at home the whole day by myself in my pyjamas.  So I baked it some cupcakes.  Raspberry cream cheese cupcakes.  My favourite.  My liver's too coincidentally.  Actually, it would be nice to know what my liver's favourite cake used to be.  Or  favourite anything.  You know, so I can mark the occasion in proper form. 

Also coincidentally, yesterday Curlypops gave me the heads up about the FilmLife Project as a part of Donate Life Week in February.  So I'm joining in with the Blogger's Challenge.  I'm not quite ready to put my face out there on national everything to talk about it on film.  Small steps.  I'll get there.  It's just still a bit too fresh.  You can join in the blogger's challenge too.  You don't have to have had a transplant, or even know someone who has.  We're all just doing what we can to raise awareness about organ donation.  I wouldn't be here without it.

What’s your take on or experience with organ donation, and why did you choose to take part in the FilmLife Blogger Challenge?

Until very recently, my experience with organ donation was minimal.  A signed consent form saying yes, I'd like to donate my organs when I first got my license.  A discussion with my Dad which didn't convince him that he'd say yes if he ever had to face that decision.  A discussion with my sister to encourage Dad to say yes.  Her telling me likewise.  

Until a day in September last year when I ended up in hospital with advanced liver failure.  You see, I also was diagnosed with Chronic Myeloid Leukaemia in March 2011 and the medication I took for that decided to chew up my liver.  Except I didn't notice.  Apart from feeling a bit more tired than normal I was fine.  And my leukaemia medication caused fatigue and it was the end of term at school so I didn't think too much on it.  Then, I started throwing up my medication within an hour of taking it.  Thinking it a bit odd I went off to my doctor who sent me for blood tests.  The next day I was in hospital.  

I was taken off my leukaemia medication and pumped full of many other medications to try and encourage my liver to regenerate.  Livers are pretty special, they can recover and regenerate from some pretty hard abuse.  Unfortunately, my liver was too badly damaged and within a week the doctors started mentioning words like possible transplant, then definite transplant.  By this stage I was suffering pretty badly from encephalopathy, meaning the toxins my liver could no longer process were affecting my brain and I had gone a little crazy.  I don't remember much of this time and the last two days are pretty much gone but I remember my nurse coming in really early one morning, so excited because they had a liver for me.  I was excited too but I couldn't remember anyone's phone numbers to call and tell them, or how to drive my phone and find them.

I found out afterwards that the doctors had given me about two days to survive with my liver in the state it was in and that I would have most likely have been moved to ICU that day if I hadn't gotten the transplant.  That in itself should be the answer to why I decided to join the FilmLife Blogger Challenge.  I am So Lucky that a liver became available so quickly and So Grateful to my donor and their family for making it possible for me to have another chance at life.  The ultimate gift and one that I can never repay. 

If you were to donate your organs, which one would you love to donate, and why?(nb. this question is intentionally quirky so feel free to be creative and have some fun with it)

I don't know if anyone would want my organs now, presumably if I have leukaemia so do my organs?  I don't know enough about it but it's definitely something to ask the doctors.  But for the sake of quirkiness, let's just say that I can.

I would happily leave my lungs to Curlypops, they don't have a big capacity Cam but they are healthy (minus the leukaemia) and have never smoked a cigarette in their life! Other than than I would love to donate my retinas.  I love reading and could not imagine not being able to do that.  The gift of sight is precious.  And I'd also like to see my new liver go on to another home (if that is possible?) We in the crafty world are all about recycling and vintage and wouldn't it be lovely if my liver could save multiple lives?  The regifted gift that would be guaranteed to be loved at every new home. 

Who in your family would you need to talk to about organ donation, to be sure your loved ones knew your wishes?

My Dad is now a convert to organ donation.  He'd want to be wouldn't he?  Once I find out from my doctors if I still can donate, I'll need to let my Dad, Mum, sister and MR know.  I have no doubt they would all happily sign those forms if the need ever arose.

 
 
A Year of Good Things
15/366 ::For the world::
I added my piece to raise awareness about organ donation.

14/366 ::For my liver::
I baked it some three month birthday cupcakes
 
 
  
Excuse the poor photo quality.  Courtesy of my old iphone which seems more interested in background focus than foreground.  Good thing the thing in the background is so good looking!

Good Things 9/366

::For myself::

I ate comfort food.  Vanilla cannoli.  Yum.

Find more Good Thing Do-ers here

  

  

Also, thank you to those who commented on my post yesterday.  All your reassurances were much appreciated.  In good news, while I do have to go back on medication for the leukaemia which has spiked from 2% to 16% in a month, I don't have to take the twice a day 3 hours of fasting ones.  Thank god for that.  Once a day tablets and no fasting.  Very relieved. 

I am a hypocrite

  
A total, utter hypocrite.  I don't think it's deliberate.  I am trying to fool myself too.

Do you do that?  Say something in the hope it will be true while in reality you're not quite so sure.

Positivity will get you everywhere.  Apparently.

So why am I here?  What did I do to deserve leukaemia and a liver transplant?  Yes, I totally understand I am really really lucky to have got a liver.  Really lucky.  I get that.  And I am lucky I have a form of leukaemia that is managable.  Non life threatening.  I get that.  I don't need to be told that.  Life is precious and I am alive.  I am lucky.  And I know I have probably The most perfect man in the world who has stood by me through this whole thing without batting an eyelid.  But I knew I was lucky in him already.  I didn't need this to prove it.  And neither did he.

But why me?  I wasn't one of those horrible bitchy kids at school.  I've always tried to be responsible and kind and considerate.  Sure, I've had my moments of meanness.  I'm not perfect.  But what fucked up thing did I do to deserve this?  Why have I been sitting here crying for the past 7 fucking hours?  Great work on the positivity.

And why do I have to feel guilty about wondering why me when I know I'm lucky?  Why can't I just wonder why me in peace?  Why can't I just be like any normal thirty year old wondering why they aren't married and having babies already?  That was the old me.  Back at 29.  Now I have to wonder how my body is going to cope with new leukaemia drugs.  Which interact with my anti rejection drugs.  Back to three blood tests a week.  Oh, and maybe with my heart as well.  ECG's on order before and after starting meds.  And how the fuck am I going to manage to fast for 3 hours a day twice a day.  I like eating.  Really like it.  And babies?  Well who knows.  Not for at least a year say the hepatologists.  Not until the leukaemia is in remission says the haemotologist.  As soon as possible says the oncology gynocologist.  I feel like I'm falling apart at the seams.  Physically and emotionally.

But that's fine.  I'm tough, I can deal with it.  Nothing a cup of cement and a 'harden the fuck up' can't fix right?

Positivity will get you everywhere.

If you can find it.
 

One Word

  
I have been sub-consciously musing over Maxabella's One Word for 2012 idea for the last few days with nothing really coming to me.  Until today.  It just popped into my head.  This is what I need for 2012.

 

to thrive.

my health

my life

our relationship

our garden

our home

This is the year for growth and change, development and improvement, health and love.

Positivity will get you everywhere.

A Year of Good Things


8/366 ::For myself and for Bloggers::
Today has been another day of quiet.  Nap filled to (attempt to) restore energy.  Contemplative of 2012 goals and One Word as above.  Lots of blog reading.  Lots of commenting love.  Surely that is a Good Thing in itself?  Everybody loves comments. 

7/366 ::For some friends::
Yesterday I went to MR cousin's (L) housewarming party yesterday and I organised with MR's direct family (parents/brothers) to go in together to get a Good Present.  L had been talking about how she wanted a nice big frangipani tree to go out the front of their house but of course, a tree is a bit expensive for most people to purchase, including them.  Listening to what people talk about liking so you can get them awesome presents is a Good Thing.  So together we put in and got the biggest one I could find.  The tropical version with pink flowers of course!  It only just fit in my car on the front seat floor.  I had to peer through the leaves when I wanted to turn left!  It's looking a bit windswept here but that's what you get on a windy day!  Do you like my attempt at wrapping?  A cheery yellow (windswept) ribbon around the trunk.  Is it called a trunk when it's that small?  You can't really call it a stem or a stalk?

Looking back : 2011 [ups and downs]

  
Well it was certainly not "My Year" as I had planned at the end of 2010 but neither was it all bad.  Really, apart from some rather horrible shittiness in the health department, it was quite a good year.

January saw MR and I heading down south for a holiday in Denmark.  It involved berry picking in the rain.  So much goodness, one of my all time favourite dreams.

At the beginning of the year I started up a Perth Brown Owls group with Sarah and have had a wonderful time at the meetings each month this year.  It started off small but now we are up to around 30 members with an average of around 8-10 people attending each meeting.  Nice size for quiet chats but we're always happy to have more members!  We are off to Knit on the Beach on January 21 as a part of the Summerset Festival.  Would love to see some more crafty types down there for a fun arvo out!  Knitting and crochet skills not needed - plenty around to teach! All you need is a hook or some needles, easily picked up for cheap at a second hand shop if you don't have some lying around already!

In February I started my new job, a dream job since uni, and loved it.  Working with some lovely ladies and making new friends.  Very important - 2011 was to be the year of being more social.

In March MR bought a house and we moved in together.  Our first home.  Very exciting and also on par with the plans, 2011 being the year we were to move in together.

Unfortunately in March I was also diagnosed with Chronic Myeloid Leukaemia.  Two days after moving into our new home.  Slight dampener.

There's a bit of a blur between March and September, what with dealing with a new health reality, settling in to a new home, budgetting for two, buying furniture, discussing plans, beginning to do up gardens, new job, tired from leukaemia medication.

April was our four year anniversary and we celebrated with a visit to Cirque du Soleil, another dream of mine that fully lived up to its expectations.  MR also enjoyed it enough to say we would definitely be going to the next show to come to Perth.  Yay!

August saw me turn 30.  Eek.  A slight ick moment for me, thirty feels like official old and adulthood.  Responsible styles.  Kids, marriage etc.  Not dealing with leukaemia.  But MR, my family and his put in to get me a very cool present (which has unfortunately only had a couple of uses since - I'm blaming illnesses...)

 

September 21st saw me out at Light the Night for Leukaemia 2011.  I was quite proud of myself, I raised $500 for the Leukaemia Foundation, something I want to continue on with this year.  

 

my sister and I

September 22nd saw me admitted to hospital with advanced liver failure.  Quickly upgraded to acute liver failure.  Complications from my leukaemia medication were apparently to blame and unfortunately my liver was too far gone to regenerate itself. So off I went to be added to the Liver Transplant List.  Pretty scary to go from 'tired, but dealing with Leukaemia' to 'you need a liver transplant' in the space of about 2 weeks.

Positives from that situation is that MR was truly the most awesome boyfriend a girl could ever ask for.  I am truly spoilt in him.  My family and his really pulled together to look after me, making sure I had decent food and keeping me company, even when I was a total bitch and utterly crazy from the toxins in my brain.  A few friends really showed their colours with their support as well.

And the major positive, I got a liver.  Not a day too soon.  How do you write a letter of thanks to a family who donated their loved one's organ to you?  This is something I am still struggling with and in fact, any thoughts of hospital before bedtime make for an entirely sleepless night so moving on for now.

I was out of hopsital at the end of October and geared myself up over the following two months into having Christmas at our place.  This was my plan at the start of the year and I was sticking to it!! Our first Christmas in our home together, there was no way I was handing over the event to someone else in the family!  So it wasn't the big extravagent affair I would have liked.  But it was good.  Relaxed, easy, plenty of food, plenty of rest.  Not too much caring about the things I didn't get finished in time and enjoying the things I did achieve while recovering from major surgery.

From L-R, top - bottom

I made Apricot and Vanilla Jam, as well as Summer Berry Jam :: the gorgeous squirrel ornament I received in the mail from gnome angel as a part of the Christmas ornament swap:: Cherry Meringue Mess, our Christmas dessert, also occasioning to be the first baking since leaving hospital ::  our Christmas tree alit and in daylight :: bunting and some pretty lanterns I received as an early Christmas present from MR's mum :: a cute Christmas plaque I picked up at the shops for $15 :: a selection of Christmassyness adorning the top of our speakers

Which leads me to now.  There are up days and down days.  I feel like I need to make a difference in the world now but I don't know where to start.  Small starts.  I'm looking at courses I can do at UWA summer school, I'm entertaining ideas of other options.  I want to volunteer more, raise money, sew, crochet, blog, write, read, sleep properly, get fit.  How do I fit it all in?  How do I narrow it down?

Starting off the New Year slothing on the couch seems ominous to me.  Is it a sign I am going to have a lazy year? Starting the year without MR - is that a forboding as well?  Surely not.  I shall quash any drama queen thoughts and jump up and down on them for good measure.  Likewise, all hypochrondiac inklings shall go the same way.

2012 is going to be my year.

Now if only I could convince myself.

Tomorrow I promise there will be some looking forward, some resolutions, goal setting and planning happening...