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

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.

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...

Looking back : 2012 [ups and downs]

I did a post of this title last year and it was good to go back and read it at times so I thought I'd continue the tradition.

Come Boxing Day, I am all ready for the year to be over and move onto the next one.  I start to get all antsy, reflective-y and planning-ish.  There's a bit of endofyear-itis and a chunk of limbo type feelings and I just want to to be over already. 

Maybe that won't be the case when I have my year.  You know, that elusive year where when you look back everything has (or at least most things have) gone your way and lots of good stuff has happened?  2011 was supposed to be that year.  The move to Perth, move in with the boy in our own house and starting a dream job all sounded like the ingredients for my year.  And then when my body decided to fall apart on me I had no delusions that 2012 was going to be my year.  But I am going to quietly live in hope that 2013 might be.  Very quietly.

Before I get on with the year in review, I've copied my resolutions and goals that I set for this year to see how well shockingly I did.


Resolutions
:: to do my tax on time this year. :: only one month late, we'll call that on time because it's the closest it's ever been!
:: to do a writing course in plot/character/setting development and submit my picture book manuscript to publishing houses :: writing course achieved in character but not the other two.  Wrote a letter for submission of my manuscript but never quite got to sending it.
:: to be open to new opportunities :: not sure what I was thinking of here, I'm usually fairly open to new opportunities but I can't think of anything particularly new that was accepted or turned down
:: to raise money for The Leukaemia Foundation and the Liver Transplant Unit of SCGH :: decided to alternate years on these charities, people only have so much money.  Raised $1700 for Transplant Australia.
:: to somehow become a more tidy and organised person, particularly in organising the final rooms of our home :: major fail!
Goals
:: to exercise at least twice a week (for at least 80% of the year) :: I think I managed this for about 3 months of the year.  Not quite 80%...
:: to recycle more :: fairly good, but I'm sure I can achieve even more next year
:: to at least halve my credit card debt :: actually I'm quite proud of achieving this when I wasn't working for seven months of the year!
:: to join a writer's group and attend regularly :: nope!
:: to do up a joint budget so we can save money and do some renovations to/buy furniture for our home :: no such joint budget, MR is quite against a budget currently due to its adult-like-implications and seeing as I didn't set one up for myself until I was 26 and he is still only 25 I am only making occasional suggestions here.  We did manage a joint savings account though which has been used for a couple of small things so far and hopefully much more next year!

Not too bad actually.  Cutting that credit card debt in half is worth two surely!  Money is something I am not at all good at.



So, to the year that was....

January
I was battling with an unknown origin cough and breathlessness that had been hanging around for a couple of months in January so I didn't get up to a great deal.  I did however go to the Roxette concert with my sister and had a great time singing along to old songs.  My liver turned three months old and I managed to finish off my first granny blanket which now adorns my sister's couch after gifting it to her as a housewarming present.

February
February saw me receive the lovely present of a bronchoscopy for Valentine's Day and a ten day stay in hospital when it was discovered I was growing mushrooms fungi in my lungs.  Charming.  Reason for cough and breathlessness discovered, at least...


March
Yet another hospital stay this month, this time only three days because I had my one year late housewarming party to get ready for and I told the doctors from the get-go there was no way they could have me for longer than that.  This stay was because the fungicides antifungal medication they put me on made my kidneys cross. I got out though and my housewarming party went well and was a very casual and laid back bbq affair.


April
There was a bit of gardening action this month with the planting of our nectarine and white peach trees.  Looking back at the blog I also did a fair bit of crafting and apparently a bit of exercise, well done me!  MR and I had our 5 year anniversary and my liver turned six months old.


May
Biggest thing of this month was doing the Run for Reason (at a walk) and raising $1700 for Transplant Australia.  4kms in 50 minutes, not too bad for a girl who went straight from the event to the hospital to have her 16th day straight of blood tests due to medication issues.  


June
Not much of note apart from some more crafting.  I was quite proud of this present for MR's Mum's 60th 

 
July
My liver turned nine months old and I started back at work at the end of the month.


August
I turned 31 and didn't care.  MR and I went on a holiday to Dunsborough and had a lovely time.  My sister and I went to the Hilltop Hoods concert and it was awesome.  I made a one task a day organise your home calendar which I haven't followed very much since...

found at virtu

September
Nothing of note


October
MR turned 25, what an oldie!
My liver turned 1 year old and I celebrated with high tea with friends (MR was away at work) and family and had a lovely rainbow cake to celebrate (just looked back and realised I never posted about my high tea party on here, woops!)

my cake!

I got it made for me and I was a little bit bummed that the
rainbow was out of order..

My present from my sister, a liver softie!!

November
My best friend got married down south and it was an amazing day.  I found out I'd be moving to a new school and was pleased about deciding to have my own class of kindy kids again, working three days a week next year.


December
Christmas out in the bush with MR's family with my family do's before and after the official day. 



How did you year pan out?  Was it your year?? 
  

     

Celebrating

This year MR and I are having Christmas with his family.  They have a big family Christmas once every two years with extended family and such invited. 

I got my email with all the details about it a little while ago and completely unknown to me, MR's Mum decided that the theme is purple and there will be a jar collecting money to be donated to Transplant Australia.

Isn't that lovely?

But it does bring to mind (not that it was far out of it) the fact that I still haven't written a letter to thank my donor's family.  I think about it often and practice writing it in my head but I never really come up with anything that sounds meaningful enough.  How do you thank someone for the loss of their loved one that allowed you to live? 

However, it needs to be done - it's been over a year now.  So this is how I'm going to celebrate me this year, by celebrating, and thanking, the wonderful people who were generous enough to help others through their loss.


joining up with #reverb12

  

One Year

I came across this yesterday and it made me smile

Today marks one year since my transplant.

According to the statistics, once you reach one year your survival rate goes up to 88%.  I can't find the percentage for less than a year but from memory I think it is around the high 70's.  I try not to look at statistics too much, they freak me out somewhat beyond that first year hike up.  After 5 years it drops to 83% and then by 10 years its 76% and it continues down from there.  There aren't any statistics past 20 years.  Maybe they are too depressing to list?  That's a bit scary so we won't think of that!  I'd like to think that that is taking into account everyone of all ages but unfortunately those percentages above are for 16-39yo patients at transplant. 

On a positive side however, I've had one more year now than I would have had if I hadn't have had the transplant. Every year from now is a bonus for me. 

My emotions have been a little bit all over the shop over the last month as I've been looking back at this time last year.  There was the anniversary of they day I went into hospital, absolutely exhausted, looking forward to a few days off my leukaemia meds and not having to do anything apart from rest as my liver recovered from its prescribed medication overdose.  No one had mentioned liver failure.  No one had mentioned liver transplants.  Sure, I had leukaemia but apart from this little hiccup things were going fine. 


hah.


There was the anniversary of the day they told me that I might need a transplant.  That one would be mindblowing if I hadn't already partially lost my mind to the hepatic encephalopathy (toxins secreting into the brain because my liver was too damaged to process them).  And the anniversary of the day I was put onto the transplant waiting list.  Although, I have no idea what day either of these two days actually was.  Encephalopathy became my friend here.  Being scared and worried was somewhat minimised by the fog my brain was in. 


There has been lots of remembering about how little I actually remember.  This was a hard thing to overcome as I recovered.  Little dribs and drabs of memory.  Not knowing when they happened.  Not knowing what else happened.  I don't like not knowing. 


And then, there have been the thoughts about what would have happened if I hadn't been lucky enough to receive a donor liver.  Well, we know what would have happened to me - according to the doctors I only had a couple of days left and they were ready to transfer me to ICU when the call came in.  All the things I would have missed out on, what my family and my man would have had to go through.  Unpleasant thoughts best not thought of but still they crept in.


I'm feeling much better now.  The day is finally here and I can move forward again.  I am having a bit of a party today to celebrate it.  There will be birthday cake.  And pretty dresses.  I considered a game of Pin the Bile Duct on the Liver, but we are going to be at a restaurant so it is perhaps not the best place for such a thing. 


Happy birthday liver

and more importantly, thank you to the amazing young man who chose to donate life and to his family who respected his wishes.
 

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. 

 

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?
 

 

I did it!

4 kms in just 50 minutes and 10 seconds. I say just because that is good for me! I did exercise for 3 times a week for the whole month of April and only managed to go 3kms in 45 minutes so that just shows my lungs are getting even better! (the large amount of steroids I'm on may just be helping that somewhat, bonus!)

Thank you to everyone who supported me with encouraging comments and/or donations, it was very kind of you :). I ended up raising $1715 for Transplant Australia.

Here's me at the end...

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.

On scars and healing

 
One of the first things I googled about liver transplants after having mine was scars.  I wanted to know how long it would take to heal and fade and not look so dreadfully hideous and bright red and gross.

The photos were very few and far between.  Possibly because most people who have a liver transplant are somewhat older and either not blogging or not all that keen on flashing photos of their stomaches for the world to see.  Luckily, I have no such qualms.  Which is odd, because I certainly can't picture walking around in a bikini any time soon.  Here however, it has a more medical aim.  I want to have a photo up for someone like me, who is still at the bikini point of their lives and who ends up with a big scar and is completely vain and googles it straight away.  Just to show them that it does heal relatively quickly.

I've certainly helped it along with Bio Oil, Vitamin E oil and Dermatix, especially to begin with but over the last month or so I've been a bit slack with applying it.  To begin with I was applying it twice a day most days.  Then after a few months I went to once a day, in the evening and just moisturising it in the morning with Aveeno moisturiser which I use on my whole body after showering anyhow.

I found the vitamin E oil and the dermatix really really sticky and they didn't dry for ages, which was fine if you are just sitting around at home and it's Summer so you can just sit around in your knickers but if it's Winter or you have to go out, it was ruining my clothes.  The bio oil is a lot lighter and soaks in faster but you still need to leave your top off for a while as it soaks into the fabric very quickly.  Which is why I went to just night time applications and have been wearing old daggy pyjammie tops which now all have a very lovely oil stripe down the middle.

It's hard to tell you the effectivitity of each of the three products I applied because I interchanged them all.  The dermatix is quite expensive, $60 for a tube that is about the size of your little finger.  The vitamin E oil I bought was in a little bottle about the same size and only $15 or so.  Bio oil is not too badly priced, I got a big bottle and I'm not even a third of the way through it.  The big bottle was about $40 or $50.

Now obviously everyone scars differently, but it is still nice to know that six months down the track, your scar could look like this.  In fact it could even look better than this, as I've seen one guy in my liver gym class who is one month ahead of me and his scar looked like mine does now at the four month mark. And he is not the type who would have been applying expensive creams and oils to it twice a day.

My scar now, at 6 months and 1 week old.

My belly button has almost returned to normal shape, although it is still a bit squashed at the top and oval-ish when it used to be completely round.  I also have very little feeling around my top half of my belly button and around the cross point of the scar.  I have no sensation of hot or cold there at all.  Quite strange.  My two drain hole scars haven't popped out and become all ropey like it was suspected they would, in fact they are a bit sunken which is just fine by me.  Overall I'm fairly happy with the healing, apart from that ropey part up the top near my boobs.  I hate that part.  The rest of it, well I think I've almost reached the 'proud' point I was aiming for.  To me it is now more of a war wound and a mark of what I have got through and survived rather than a stupid ugly thing. Finally.  MR is still awesome about it, it does not bother him at all.  I think that has helped a lot.  Although, as I mentioned above, I'm still not comfortable with the idea of walking around in a bikini.

My scar at 3 weeks and 4 days old.  The staples had only just come out a few days ago.

So, there you have it.  I'm interested to see what it looks like at the nine month point and the one year mark.  I'm glad I've taken photos along the way because I can't see the difference without looking at the photos.  Before taking this one and looking at the old one I knew it had faded a bit but had forgotten just how red it used to look.  I have hope though.  In that photo above of the scar in its new form, you can see my appendix scar.  It is on the left side of the photo, about 3/4 of a centimetre above my knickers.  It starts about in line with the drain hole mark and goes across about two or three centimetres in the photo, on a slight angle following my knicker line.  Can you see it? I can, just, but only because I know where to look.  Admittedly, that scar is 11 years old, but it's a good sign for the future!

More dates of note

Today is mine and MR's fifth anniversary.  For our anniversaries we have the tradition of 'doing something special'.  Most of the time this has been a holiday but last year we went to Cirque du Soleil.  This year we are thinking it will be a holiday as well, perhaps in May.  Definitely down south because that is our favourite place.

I am absolutely dying to go on a holiday.  I would love to just get on a plane and forget about silly blood tests for a week or two.  But I will settle for a few days in Dunsborough quite happily, especially if I get to have a hot chocolate from Hot Chocolatte every day.  Best hot chocolate in the world. 

Each year we give each other a card as well.  Nothing like a bit of love written down.  I feel so lucky to have him in my life.  I really got the jackpot in best ever partners. 

Tomorrow is my six month liversary! Already! My, how time has flown.  I must bake it something.  I'm thinking sticky date pudding.  Livers like sticky date pudding. With yummy butterscotch sauce and ice cream and cream.  Oh yes, they do! 
 

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

I Am Home!

Oh, the relief!

MR flew in at 10.20, got a taxi home and then jumped in the car to come pick me up.  Taxi fares are not what our budget needs at the moment but it couldn't be helped.

Now if only the Meow would come out from wherever she's hiding at Dad's house so she can come home.  MR and I looked and called twice! Once before doing food shopping and once after. 

Silly camouflauge meows.

She was not hiding here, we checked.

 

I am NOT going home today.

  
All my optimism came to nothing.

Stupid doctors.  Apparently my kidney function is up now, which they would have seen if they had have looked at my blood tests this morning when they came back.  The only one they have to wait til 4 for is the anti-rejection levels.  And why are my kidney functions up?  And how high are they? Who knows, because they didn't bother coming and telling me themselves, they just passed a message through the nurse and ran off home so they didn't have to answer their pagers for them to come and actually explain the problem to me.

I am really fucking pissed off.

As far as I'm aware, contrast dye for CT scans and MRIs is processed through the kidneys.  I've had three doses of contrast dye this week and today when I had the scan I mentioned it and the radiologist asked if I had been put on fluids to flush it out, which I hadn't.  I mentioned it to my doctor today and he said just drink lots of water.  My blood test this morning was before the CT scan. So tomorrow it's only going to be higher if that's what's causing it.  And if that's what's causing it I am going to be well and truly ropable.


Soooooooooooooooo SOOOOOOO tempted to just discharge myself.

I'm going home today!

I may still be waiting here and it's 5pm but I am going home today.  I've packed my bags and everything!

My doctor is not keen on sending me home until my anti-rejection meds level stabilises after it was pushed up by the antifungals.  Today my levels came down to 12, from 15 so I think they are pretty close to stable.  They should be around 11.  Luckily, they decided I didn't need to be on intravenous antifungals for another week, I got to start the tablet form last night.  

They got me up early for a CT scan of the head, just to make sure there are no mushrooms growing in there. (Looks all clear.)  Since then I have been waiting, waiting for this morning's blood test results to come back, they take a while to process so they don't come through til 4ish.  And then since 4 I have been waiting waiting waiting waiting for the Professor to get out of clinic, hear my results and approve my going home.

Because I am going.

See?

 

Valentine's Day

 
Happy Valentine's Day everyone!

You'll never guess what I got for V Day...

A bronchoscopy and a hospital stay.  Oh yay! Aren't I just so lucky!!!!!

(*grumble*)


I was totally dreading the bronchoscopy (tube stuck down your throat and into your lungs to have a look and take a sample of lung gunk and a biopsy if needed) but the twilight woozy drugs they gave me worked so well that I don't remember anything past putting in a mouthguard thing to keep my mouth open while they tubed me.  Next thing I remember (vaguely) is getting off one bed and onto another in my room.  THANK GOD. Of all the procedures I have had since my liver went caput that one was the one that  I was most anxious about in the lead up to it. 

So I'm stuck in hospital for a few days while we wait to see why I only have about half of the lung effectivity as I should do.  My liver has also been playing up a bit, the ALT (one of the things they test in the liver function blood test) has been rising for a week or two and has reached 280 when it is supposed to be below 35.  They don't want to increase my immunosuppressants because that will make the probable infection (I say probable because they have no idea what's the problem, even after an x-ray and a ct scan) in my lungs worse.  So here I sit. 

In other much more exciting, but rather trivial, news, I had my first 'green smoothie' yesterday.  I started off a bit wussily and only had one vegetable but that's beside the point.  It's apple, mango, spinach and lime.  It was quite yummy.  All I could taste was the apple, which is good because I really hate spinach.  I got it at some health food shop.  When I get my tax back (after I have put it in heh heh oops) I am going to buy myself a juicer or maybe one of that fancy really expensive vita mix or whatever they are called machines.  And take up a bit of a juice diet.  Not as in, only drink juice because that would be totally boring.  But as in, have at least one green veggie filled smoothie a day.  We'll start and one and if they taste nice maybe I might increase it to two.  We'll see.  Maybe I can just put apple in all of them.  Apples are green!



Are you a juicer?  Fruit or veggies?  What are your favourite green veggie smoothie combos?