Saturday, 22 September 2012

The Nips Are Getting Bigger

Sometimes I wonder
What all these chemicals
Are doin' to my brain
Doesn't worry me enough
To stop me from doin' it agai-ai-ain
Wipin' out brain cells
By the millions but I don't care
It doesn't worry me
Even though
I ain't got a lot to spare
- The Nips Are Getting Bigger, Mental As Anything - 

 Woah-oh-ohh. What another insane week I've had. I tell you, if I was well enough I'd be drinking and the nips'd be getting bigger! The morning after my last post I wound up in hospital setting the doctors all a-flutter with excitement and trepidation by presenting with a constellation of crazy symptoms. In my last post I spoke of a weird infection in my lymph nodes that developed a week after the last Rituximab infusion. Well, I called the hospital to let them know about it and to cancel my next infusion because I was unwell. They hit the big red panic button and told me to get my arse into hospital pronto. So, I did. I spent the next 3 days there getting poked and prodded and CUT! I had the neurologists, immunologists, dermatologists, rheumatologists and just about every other 'ologist' you could imagine working overtime to diagnose me. I even got interrogated by a nice fellow from infectious diseases. I was starting to think I had Ebola or something. It was really exciting¡¡¡

At first it was a delayed reaction to the Ritux. Then it wasn't. Then it was. Then it wasn't. Then, after taking 2 biopsies [read: hole-punched in the head and leg with a torture device then stitched up] of a rash I developed, it was a drug reaction. They took what felt like a litre of my blood, stuck things down my throat, poked my groin (not in the nice way) and made me feel like some mysterious creature from the Loch Ness or The Never Ending Story, except I would be the un-luck dragon. Or something. They didn't want to treat me, they just wanted to observe me and see if I would die, heal or just stay all messed up. The upshot of all of this drama is that now they are freaking out about my next infusion. I know I am freaking out about it! The problem is there aren't many options to choose from for disease modifying drugs. And I am so so so not going to take Tysabri.Tysabri has helped a lot of people but it has a higher fatality and complication rate and I am just like, NOOOOO. Even the doctors are reticent about it. My 'medical team' (I have a medical team! Go team!) are working with other hospitals and specialists to work out what to do next. Apparently I am a medical first for this type of reaction. I always knew I was unique, I just wish I could express that uniqueness differently. Anyhoozle. I have 3 different appointments at the hospital next week to discuss their plans. There is talk of doing some desensitizing techniques (probably more prodding) and they plan to admit me to hospital for a few days during and after my infusion. I don't know if they think it is reassuring to tell me this (they seemed quite enthusiastic about it) but they reckon if I have another reaction it will be swift and severe. PHEW, I'm glad to know this. BUT I WILL be in hospital and they WILL have a really good action plan for every possible outcome. Fricking hell. I'm sure it's patently obvious I am very underwhelmed by the reassurances. That's not to say I don't believe my doctors are very skilled; I am in the best hands in the absolute worst possible position to be in. It's a rock and a hard place. A catch 22. A quandry. A quagmire. Freddy's nightmare on Elm Street. It's what Multiple Sclerosis brings into my life almost every day: uncertainty.

So, when I am better, and when I get over this next hurdle and have the perspicacity with which to better articulate myself about this mess, I will update you. I'm not a big drinker but I might make an exception then...and drink a few nips of a delicious and belly-warming libation. Will you take a nip with me when I get through it?

This is from Count Down - a much loved show from my childhood.
Post script: Wilbur is back! It's a long story...

Sunday, 16 September 2012


Dont hold back...
 If you think about it too much, you may stumble, trip up, fall on your face...
Don't hold back...

You think its time you get up, crunch time, like a sit up, come on keep pace...

Don't hold back...

Put apprehension on the back burner, let it sit, dont even get it lit...

Don't hold back...

Get involved with the jam, don't be a prick, hot chick, be a dick....

Don't hold back...
 - Galvanize, The Chemical Brothers - 

The last couple of weeks have been utter madness! My Rituximab infusion did not got exactly as planned after I started to show signs of an allergic reaction about an hour into the treatment. My beautiful nana died a few days after that. My pet sheep, Wilbur has gone missing and I now have some bizarre infection in my lymph nodes. Seriously?! I nearly chose a song with a bit of a potty mouth title just to express my complete and utter frustration at the shit flying everywhere right now! I returned from my nana's funeral in Yeppoon yesterday feeling pretty unwell. I went to bed last night with a swollen neck and feeling hideous only to awake and find that Wilbur has gone AWOL. We have spent a large portion of the day driving around looking for him but we can't hear fim respond (as he usually does) so we are worried he is long gone. It sounds like I have trivialised the loss of my nana, GG, but I assure you it's just that I don't know where to start or how to reconcile the last couple of weeks.

GG was the closest grandma of mine and she was a brilliant woman. She was a talented artist of many mediums. She was warm and fuzzy and she had fantastic skin until the day she died. There are many platitudes I could trot out here, that people always say to make you feel better, about how she is no longer suffering and blah blah blah, but it is true and she will be greatly missed.

I am sitting in bed as I type having myself a little pity party and feeling  further from well than I would like. Wolfgang's lovely sister, who is incidentally a GP, checked me out today at a family brunch and said I have some kind of infection that is expressing itself in an unusual way due to the immunosuppressant. Have you ever asked someone for their professional time off the clock, on a Sunday, pro bono? It feels awkward and intrusive but she is so lovely and I really needed some medical advice pronto. So I have to get blood work done tomorrow and I have to delay the next Ritux infusion in 3 days AGAIN. After the reaction I had a couple of weeks ago I have been...umm...less than enthusiastic about this upcoming one. They can't administer treatment when I am unwell so it's off to the docs again to sort out this infection. BLAHHHHH. Ok, this is starting to read like an online diary. Are you bored? I'm not. I could bitch ALL night about this! So I don't alienate my few readers I will abridge the rest of this post. And they all lived happily ever after, The End. OMG. That just reminded me of this:

Anyway. So the question is: do I take the day off work tomorrow getting tests and then banging my latest, and by far, greatest investment, my Tibetan singing bowl? I think we all know the answer now. I realised I really do not manage my stress levels well and that's really not good for my health. I've had trouble with yoga and meditation lately so I got this amazeballs singing bowl and it totally steals my attention from everything when I use it. Internal and external chatter just stops so I'm 5 days in and I'm hooked. For me stress just causes this incessant chatter in my mind and I tend to overthink everything and every adversity just about breaks my back. So I'm banging that bowl A LOT and it works!

So. Galvanize. I heart the Chemical Brothers. Although this song is not my favourite it's got some interesting sounds. The Chemical Brothers just do this crazy thing where they build up and up and up and then it comes crashing down around you. That's what I love about them anyway. Like building a giant leggo tower and then knocking it down. I dig it. They have one song in particular (the title escapes me right now) but it's a perfect example of that analogy. Okay. Just listen to the song.

Good night GG and Wilbur, wherever you are.


Monday, 3 September 2012

Army of Me

"You're alright
There's nothing wrong
Self sufficience please!
And get to work"
- Army of Me, Bjork -

Oh hai! It's been a while since I've checked in, hasn't it? I have been a busy little bee of late, although I still feel rather slack for not updating sooner. My fundraising event was an absolute killer success - we raised over $3000 for MS Australia and the MSRA. With no small thanks to my amazing family and friends, I might add. The sausage sizzle was a sea of red, with most people wearing head-to-toe red, some even getting their hair sprayed red to get into the fun. It was really a hoot and we caught up with lots of friends we don't get to see very often.  A dozen or so local businesses got involved donating over $2000 worth of goods for the sausage sizzle and the huge raffle. In short it was a day of laughs and lots of warm fuzzy feelings. I'm not sure how my family feels about it but I haven't ruled out doing it again next year!

I returned to work after having about 6 months off only to be made redundant by the irrepressible Can-Do Campbell Newman (our new Premier). What a massive dickhead. There will be about 15,000 other Queenslanders in my position very soon unfortunately. Anyhoo, I'm over that but I have about 4 weeks until I will be unemployed for the first time since I was a teenager. Eeek! I admit I am a little freaked out but I am trying to remain positive about new prospects and the opportunity to get more creative. Besides, work isn't everything...and I am having more chemo in a couple of days so my focus is on that right now.

My most recent MRI resulted in the best health news I've had since my diagnosis. Two of the scary lesions have completely disappeared! The remaining lesions have diminished significantly in size and Walshie, my neuro, was stoked. I didn't even know he had teeth until that day when he smiled at the good news. I guess he probably doesn't get to deliver as much good news as he does bad. Anyway. I nearly jumped on him, I was so excited. Instead, I gave him some of my favourite chewing gum and some rude post-it notes. Ours is a complex and deep relationship, you see.

I also had my first meeting with my immunologist. We will call him The Hulk. Not because he is huge or green, or even angry. On the contrary, he was quite happy. His name just reminds me of The Hulk. But, I digress. We talked about the latest findings about Rituximab and whether or not we can continue to use it to treat me. After the next two infusions I will be apparently quite immuno-suppressed and therefore even more susceptible to opportunistic infections. I'm nervous about this and frustrated at the thought of having even more frequent checkups and bloodtests. I may have to go on a long term course of antibiotic prophylaxis to avoid a strain of pneumonia that has been a problem for long term Ritux patients too. But the options are few so I'm not feeling too sure about anything and I feel a bit powerless. It's a frustrating time. Having whinged about this I should also say that I am extremely lucky to have access to these life saving drugs. Without them I daresay I would be in a wheelchair or worse today. I just would love to know if anyone else out there has had a similar experience and has some words of wisdom for me.

Regardless of all this, I will be having the Ritux in 2 days and again in a fortnight. I like to imagine the different cells that comprise my immune system as little soldiers. The Rituximab kills half of my immune system and changes some functions of the other half, but somehow my body keeps working to stay alive and well. What an amazing thing that is. Sometimes it blows my mind completely. To me it's like trying to grasp the immensity of our universe - it's just so complex and mysterious that it's hard to fathom. Our bodies are incredibly adaptive and smart so I have to trust that mine will keep doing its best to maintain stasis. My little army of me will do its best I'm sure!

I'm feeling positive about the whole MS thing at the moment. It's been nearly 12 months since my minor relapse and 20 months since I was really sick. The longer I go without getting sick the more it feels possible that I won't. That is something I aspire to without any qualification.

On a completely unrelated matter, my gorgeous little family got me a PET SHEEP for my birthday! OMG! WTF?! We named him Wilbur. He is about 9 months old and is very cute, although he also looks really tasty. JK! I'm sure there will be a story or two to tell about him in the future. A sheep!  My menagerie is slowing coming together...hehehe.

My song for today's blog is Army of Me by Bjork. I've always loved this one and I think it's a salient choice. The clip is really fun too, I think. Blogger is being a shit and won't let me upload the video to this song so here is the link instead! Enjoy.

 Army of Me