Dem Bones, Dem Bones.

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)

Blog entry preceding this one is " Week 4.25 of Radiation:".
WARNING: Icky photo warning of post-surgery pictures, past and present.


" The toe bone connected to the heel bone,
The heel bone connected to the foot bone, 
The foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,
The thigh bone connected to the back bone,
The back bone connected to the neck bone,
The neck bone connected to the head bone,
Oh, hear the word of the Lord!"  - Words (Unknown), Melody by James Weldon Johnson (1871-1938) "Dem Bones".


Lily: Apologies if the song is now stuck in your head yet when I was thinking about this post, about my upcoming operation associated with my bone disease, the song got stuck in my head and so I pass it to you as the gift that keeps on giving.
Well, on the 20th of February I'll be heading into hospital to have my first major operation in over eleven years. I'm having a maxilla osteotomy; having the bone from the roof of my mouth cut out, shaving away bone on the cheek; and moving my nose a little, for it had been pushed out of place by the diseased bone. I'm loosing three more teeth on the upper right side. This displeases me... there's only so much "freak" one person can take and to loose more teeth, not through poor hygiene or an accident but because I was unlucky enough to be born with a rare disease that weakens bone.
I've spoken about the disease before - "Polyostotic Fibrous Dysplasia" (PFD) - the following web link is probably the best and most accurate for further information should you be so inclined to know more. 
Fibrous Dysplasia.Org


This operation is overdue. I've become "aware" of the pain that the PFD is causing in my skull and when you become aware of it, sometimes it's the only thing you can focus on. Yet J.J came first. I pushed the pain aside, endured it - endure it still. In light of him becoming terminal we decided that it would be better to have the operation before J.J passes away so as not to stress Arwyn out in the wake of loosing one parent. 
I'll be having an Osteotomy - basically the bone being cut out of my face. It is all done through the mouth so no cutting of skin, yet my mouth will be stretched out in all directions and the roof of my mouth cut with the bone being dislodged and realigned.
Not pleasant let me tell you, I've had this type of operation before.


The following photos are the aftermath of past osteotomies, not many people have seen these so please...feel honoured. 

 The lying down photos were probably taken the day I got home from the hospital.

These next two photos were taken with another operation, about 2 to 3 weeks after the op. I was in my twenties with these photos, I wonder how my 30-something body will heal?

PRE-ADMISSION:

Lily: Today (16/2/12) I attended the pre-admission clinic, a five hour long appointment in which I see a member of the surgical team, the anaesthetist, a nurse, the pharmacist. They sell you on this appointment by letting you know it'll take four to five hours. Awesome! However, lucky am I, I'm in and out in under two hours. The only person I care about seeing is the anaesthetist - they are the ones who can write in my chart permission to give me a "relaxing" pill before the surgery. I'm good - usually, but on the morning of the op day, I freak out. I become a little bitch and start twitching with nervous anxiety. I express this to the anaesthetist in detail and she writes me up for at least 20 milligrammes of temazapan for the morning of my op. She even suggests that I take some MS contin (morphine) when I wake up to aid my "mellow" groove.

THE DAY BEFORE:

Lily: Sunday morning and my sister wakes me at 8:30am by sending me a text message asking if I had heard from our dad who is driving up to help take care of me, the house but mainly Arwyn. As children we are forcing him to do the twelve hour drive over two days to make it easier for him, yet of course we still worry - my sister worrying the most however, since I was quite happy to wait until lunchtime (proposed arrival time) before I started my worrying. 

My dad is turning 72 this year and he must have access to a fountain of youth drip-line since he doesn't look like other 71 year olds. I'm not saying he looks twenty or anything, but he still looks the same to me as what he does when he was 50. His hair is still black with only whispers of grey/white starting to speckle through and the hairline hasn't receded at all - he has great hair, I should be so lucky when I'm at his age.

I continue with my cleaning regime of getting the house cleaned for my dad's arrival so he doesn't feel like he is walking into a nuclear waste dumping ground. I've washed and replaced the bed sheets on my bed as per instructions from the Pre-admission nurse and mowed the last bit of lawn, praying to the gardening gods that the mower would not run out of fuel. I've changed the cat litter, so that's all fresh, tidy.

And now that I've cleansed the house with incense sticks, I have nothing to do but wait until dad arrives so we can continue with the next part of our day.

Perhaps it is time for me to pack my suitcase in the interim.

After my dad has arrived, there is lunch, going through what needs to be done and then home to sit and wait for the day to be finished. Dad draws first blood with his granddaughter in the battle of wits of Grandfather versus Granddaughter. 

Battle one:

Last night , Arwyn left her Elmo toy out on the dinner table waiting for J.J or I to change its batteries. By the time dad arrives today, the batteries are still unchanged in which my dad asks me if I was going to change it. I make some remark saying it's not high on my list at the moment and my dad says loud enough for Arwyn to hear that " Your mother doesn't care." What Arwyn heard " Your mother doesn't care about you." Ten seconds later, Arwyn is bursting into tears declaring that she doesn't like what Poppy has just said. Poppy rolls his eyes, hands up in surprise... Any attempts on my part to explain to him the reason why she's upset isn't going to help as he wouldn't understand and any attempts to explain to her that Poppy is only joking also isn't going to help for the exact same reason.

*sigh*

Winner: Poppy.

I'm not really worried about tomorrow morning... about how they are going to slice into my face.....I'm more worried about how Poppy and Arwyn are going to be together...whether Arwyn will actually get to school...whether Arwyn will walk all over Poppy and how J.J will go amongst all this. I'm more worried about the days just after I arrive home from hospital when the carnage will begin and I wont be able to rest because the three of them can not function without me. Not being the Sun here in which I think all revolve around me - it is just the role I have assumed, it is my job, it is my life that I take care of everything...and I just don't know how everyone will go without me being there to organise.

See you on the flip side peeps, I have a 4:30am wake-up call.

MONDAY, DAY OF THE SURGERY:

I'm sooooo nervous - but I can't say anything to anyone. My heart is beating a mile a minute and all I can think of is if something goes wrong, Arwyn will be an orphan. Yes J.J is alive but for how long? He has an appointment today at the clinic and I know the cancer has spread. And now I'm stripping down into a hospital gown. Shit! It's getting closer. I'm okay, I'm okay. I've been asked my name so many times - when's my date of birth? What is the operation that I am having? Hospital policy, I completely understand....just please hurry up and put me out.

I was first on the list but thanks to the sleeping tablets I have fallen asleep; I've woken up and have been informed it is time to do my surgery....I became second on the list and it is now an hour past my scheduled time. The doctors stand around me making jokes and the fucker to my left stabs my wrist with a needle while another one asks me my weight. I tell him and he says, no way you can't weigh that, you look much skinnier - I tell him I love him and then BLACK!!

AWAKE!!!

OH MY GOD I'M AWAKE....WOOHOO FOR ME - I'M ALIVE. I can't speak....my eyes are blurry and there is something on my face, get this thing off my face....get it off, get it off, get it off. Phew.....you heard me mentally asking you to take this off my face, now go and get me a cheeseburger - GO!

Damn it, she's putting a white patch over my nostrils, these are really long stitches hanging from my nose, noooooooooo not the mask again - Pain button?? I have a pain button let me just press that now.....sleeeeeeeeep.

23/2/12: - Morphine fucks you up. Tablet form, not so much, just a slight chillin to help you relax of a night time to aid in sleep.....I.V form - IT FUCKS YOU UP. Every time I closed my eyes I was in an instant nightmare. I stopped the self-medicating morphine drip as soon as I became "aware". The two long stitches I thought I had were actually tampon style nose plugs stuck up my nose - not attractive, nor comfortable. Apparently they had taken so much bone away from my right nasal cavity that the blood was freely spilling. I am told that they actually managed to clear a window in there so I should be able to breathe through both nostrils (woohoo). 1.5cm thickness of bone was cleared away from my cheek bone and they took another mass of bone from the roof of my mouth. As such my speech is worse because of the swelling, but it will be interesting to see how my speech goes once I am healed.

I feel so out of it.....and Arwyn is looking at me differently. I don't like that. She looks at me like she knows she knows it is me yet she questions it at the same time showing her doubt.

Anyway....I doubt I will be able to write much more as all I want to do is lie down. So here is a photo diary for the first couple of days. And I may update this blog post with more as I heal.

Two hours out of surgery

The nose tampon strings I thought were stitches.

Looking almost normal Tuesday night around 7pm.

Tuesday morning, after nose padding removed.

2am- Wednesday morning, the swelling begins in earnest

I hate feeling like this. Hate it, hate it, hate it. And I really want to blow my nose, but I'm not allowed to. This sucks! SUCKS, SUCKS, SUCKS!!

Okay *sigh* Moan done. going to go to sleep.


Follow up appointments on Friday and Wednesday, will be able to get much more from the doctors since I will be coherent.




What is written below was to be a separate post to accompany the week that was... of Lily's surgery - that being said J.J and I lost days, apathy seems to have taken hold... so this is a draft of what was written at the time. It hasn't been edited and J.J didn't add much during the week but here it is...

MONDAY:

J.J.:  It's going to be a long day. I already knew that, just wasn't aware of how long it was going to be. We start off by dropping Arwyn off at Hero Corrina's who will take her to before school care for us. Then it's off to the PAH for Liv's check-in and my 'routine' oncology check-up. Well, I can already feel from what my body is doing that it isn't going to be routine.

My stress levels build. I'm anxious, twitchy, alert, but distracted all the same. I imagine this is what it felt like to be in a fox-hole waiting for the action to start.

We get Liv checked in and I wander off for the routine bloodtest. By the time I get back,  Ted is there - Liv has been checked in and now its just waiting time for her surgery my appointment.

Time for breakfast.

We finally get in to see the Doctor - he's actually the head of the entire oncology/heamotology dept. He gets things done, has a bedside manner  and remembers the details of your case. In a clinic that is this busy anyone of those characteristics is enough. I like him.

He greets me with a how are you? And follows it up with a "you never complain."

"Well, today I'm going to."

"Oh?"

I proceed to explain the new symptoms. The pain down the legs, across the back, the trouble with pissing.

Within 10 minutes I'ven been booked in for an MRI - normally a month long waiting list.

Down in radiology we find that its going to be a few hours before the MRI - I send Ted home, and tell him that he can pick me up after Arwyn from school. Lots of driving, but what can be done? Ideally, everything would have been done long before - but it just isn't going to be easy is it?

2pm - MRI done and now back at the oncology clinic waiting for the docs to come back and tell me what has gone wrong now. My thoughts are racing back and forth between the cancer and wanting to check in on Liv. I want to know that she is ok. I want to be in the room holding her hand as she wakes up. I want to be able to look after her the way she looks after me.

I ring Ted and let him know what's going on. I tell him to just come in and wait after he picks up Arwyn.

Damnit!

I dont think of it until 3:10 - the plans we made for Arwyn's hair to be done!

AAARRGGGHHH.

I don't have the phone number.

I finally get back in to the docs - its a registrar this time. She tells me where it has spread too, gives me a bunch of pain relief. The other Doctor had already made arrangements for emergency radiation treatment. They want me back on friday for more discussions.

Ok- it is a case of hurry up and wait, but it is happening very fast.

That doesn't actually bode well.

Around 4pm we are finished and head up off to Liv's room. The surgeons are with her, she's been worried about me. She looks great. Tired. Sore. But she is the beautiful bride I married nearly 10 years ago.

I'd do anything for her.

She's worried about me. She knows its spread, I tell her what I know.

It's time for home, dinner, bedtime rituals for Arwyn.

I'm fucking exhausted, I'm in pain, I'm stressed.

Time for sleep.

Lily: Being sliced and diced - BLACK OUT - Fuzzy.....SLEEP! Nasty morphine based dreams.....need to be "aware".

TUESDAY:

- J.J.: Ted and I get the little princess off to school, with the help of Corrina coming in  to do her hair for us. The rest of the day is spent running around doing little errands. A bit of retail therapy.

Lunch. A phone call or two to Liv - she sounds great.

I fall asleep on the lounge.

Lily: A little it more with it...spent the day watching seasons of " How I met your mother".

WEDNESDAY:

J.J: I wake up in a panic.

It's 8! Oh god, please let her be ready for school.

*Relief* The house is empty - Ted has taken the little one to school.

I make some breakfast, shower, ring Liv - she gets to come home today! We leave straight off to go and get her and get me in for radiation. I'm trying to figure out a map and schedule.

Thank god, Liv is waiting in the foyer. Wow, she really wants to be gone and home. After all the time I've spent at the PAH over the last year I can't blame her. I get dropped of at the Mater - lots of chatting with staff over me being back so soon. They tell me how long a day it will be.

The first planning part last about an hour - nothing to do now for the next three hours.

I head off to the sushi train.

Yum.

I go back inside and the nurses give me a bed in a dark alcove to have a nap.

Lunch and a nap.

Awesome!

I have a quick chat with the radiologist - side effects, how long etc.

Treatment - lay on table, don't move, all done.

Get picked up.

Home.

Home where we all are.

I dont want her to do anything, I love having her back.

Just getting to sit around the lounge with her is enough.

Lily: I'm home.

THURSDAY:

Lily: I honestly have no recollection of today.

FRIDAY:

Lily: Seriously, my face hurts.

SATURDAY:

Lily: The weight of the world is pressing down upon my shoulders. I have reality firmly shoved into every orifice and I'm panicking. The second guessing being done on decisions I am making on behalf of Arwyn and myself for when  J.J dies is sending me around the twist. I need support. I need someone to take care of me. My face feels like it has been ripped off and stitched back on - today is not the day to place doubts upon me. What do I do? Where do I go? Why are you bringing this up now?

I am crying so much and it is forcing my face to pull apart from the stitching. Oh my god there is so much pain. Pain, Pain... PAIN!