Thursday, 16 June 2011

And the winner is...more chemo!

Soooo. Yesterday I saw my neurologist.  He is a busy man who practically runs between patient beds and clinical rooms and doesn't seem to stop. He is an oddly attractive character who wears tight shirts and has a curiously groomed moe. This is, of course, irrelevant but it helps set the scene. I suspect he also moonlights as a comedian as he possesses brilliant comic timing and loves to take the piss out of me whenever the opportunity presents itself. My partner, Wolfgang, and I agree that he is very likeable, especially when he has good news.
So. The BIZ. After the initial how-do-you-dos we got right down to it. Short story long: he feels I should do Rituximab for the next three years. I must admit I was shocked - I didn't realise we were looking at that length of time for treatment. I get it though. I had a very aggressive onset. He said he wants to see the MS totally quiescent for a reasonable period of time and I'm fine with that. I am just not ready to accept three years of chemo so I asked if we can take it six months at a time and he seemed amenable to that - especially since I am in my 'child-bearing' years. I find it hard to keep a straight face when confronted with that phrase. Regardless of the fact that it is...well, true. We discussed my general well-being, which is poor, and he attributed my propensity for illness to the chemo. It's an immuno-suppressant so what can you expect?

While Dr 'Micky' (I just decided on this nickname) was scrolling through my records he briefly brought up a profile MRI picture of a head and brain on his PC screen. I asked him excitedly if it was my brain and he looked at me seriously and flatly said, 'No. You don't have one.' HILARIOUS.
Re-enactment only. Really.
He agreed to walk us through my series of MRIs since I have never seen the pictures. Again, I got a shock. He pointed to several large white patches on different brain images. They were my very own multiple scleroses. Aww! I thought they would be little, tiny patches that had wreaked massive havoc on my body. In fact, the patches were big. Some seemed to be in the order of 1-2 cms in size. Not mms - cms. I decided that instead of spurting expletives, as is my want, that I would try to have a sense of humour about it. 'No wonder I felt so bad," followed by a lame chuckle. Ok - so maybe I said 'shit' instead of 'bad', but this is a massive improvement for me. There has been so much crap news this year that I must admit my language has regressed to that of a 13 year old boy experimenting with the feel of new swear-words on his tongue. Colourful, in a word. So what, though? I'm all grown up. NB: if you are a future employer, I don't swear at work. Much. And I am REALLY SMART.

So that's the end of that chapter for now. I can go back to having an appetite and not feeling crazy-nervous. I go back in a fortnight to see Micky to discuss blood test results and book in for two infusions of Rituximab, the wonder drug. I really need to gear myself up for it. The build up is full on and the infusion process is especially daunting. I am excited to see a new MRI of my brain though. MRIs have so far not resulted in good news for me so I'm hoping they show a diminishment of the lesions. I'm feeling quietly optimistic and I have a good feeling about it! Wish me luck!

P.S. Eyeballs look COOL in MRIs - you should google it!

Monday, 13 June 2011

The importance of being Yoshi

This is my dog, Yoshi. Yoshi is an 18 month old West Highland White Terrier. I've had the luck of knowing Yoshi since she was about 6 weeks old. She's only been in my life for this short short time, but she has had a profound impact on me. Poor little Yosh has been very sick recently with complications from knee surgery.

She's an awesome little dog so I thought today I'd dedicate a blog post to the importance of being Yoshi.

Yoshi as a puppy

 Yoshi came into my life at a very unhappy and stressful time. She made my days so much brighter and gave me a reason to come home from work every day. She gives the best greeting of any dog I've ever met! She also gave me total and unconditional love and companionship at home - I was seriously lacking that. 
She's an incredibly affectionate, obedient and funny little thing.

After her recent knee operation :(
She's been my constant companion through an unhappy marriage, a divorce, 4 house moves, many illnesses (including the MS), the floods that claimed our 'new' home, job changes, a new relationship and much more. 

When I was sick in hospital I was pining for Yoshi terribly. It was kind of embarassing actually - I think everyone thought I was losing the plot because I couldn't stop worrying about her! But we'd just lost our house and she was being shunted around the place and I wasn't around, so I know she was pining for me too.

Until I met Yosh I wasn't a crazy dog lady, but I fell in love with her and she quickly became a really important member of my family. Now I would describe myself as a Yoshi enthusiast and a huge dog lover! I'm really mozzing for Yoshi to have a speedy recovery so she can return to her maniacally energetic ways soon.

Saturday, 4 June 2011

To Ritux or not to Ritux? That is the question.

Today I started a couple of lists. In just over a week I see my Neurologist to decide the next step in the management of MS. The first list is comprised of about a trillion questions - and I know he won't have answers for all of them. For example: a) why am I sick ALL the time - is it the Ritux? b) are there any surprise lesions? c) can I try interferons? etcetera.Very soon I'll reach the six month mark since my last Rituximab infusion. I am pretty nervous about what the doctor will suggest and am scared in equal parts about taking the Ritux and not taking it. Nuts right?! It's like being stuck between a rock and a hard place. If I take it then it's more immuno-suppression and how long can you do that for without complications (don't answer that!)? And if I don't take it then I'm at risk of a relapse. It's a quandary.

 I'm acutely aware of my biological clock and knowing that we can't even think about conceiving until 12 months after my last Ritux infusion keeps me awake some nights. (I'm nearly 33 and am also blessed with endometriosis.) My partner has four beautiful kids and even though we only have them part-time they have given my life a whole new dimension that I just love. They are awesome children - they test me and more than reward me and I miss them when they aren't around. Experiencing milestones with them is pretty exciting too - tonight the littlest one lost her first tooth and I am so proud! In preparation for the tooth-loss (so wiggly but not quite there) we made pizzas and had a pizza picnic on the kitchen floor with red lemonade (a rare treat but it's a special occasion!). They really bring out the kid in me. But, I digress...I do wonder, if we had a baby, if the kids would feel threatened. But I know there is more than enough love to go around in our home, and we have dealt with trickier things in our relatively short relationship. I know my health should be my first concern, but it really is hard to ignore this desire to have a baby. Especially since I know I am with the right man (who, incidentally, is also awesome).  I suspect also that the cave-woman in me really wants to leave a biological legacy - one that merely donating organs when I'm plant fertiliser does not satisfy. You know, the whole blood-line thing. Yeah. Meh. I'm getting bored, and I'm sure you are, so I'll move onto list number two.  Oh, a side note: I'm starting to think red lemonade was a bad idea tonight...the kids are so hyper right now and it's past their bedtime.
Let's see. The second list is kind of a work in progress. It's a combination of affirmations and 'big' to dos. Stuff that I feel I need to tell myself and do to feel good about life and where I'm at. Without totally embarassing myself I will share a few items with you. After all, that's why I started this blog.

1. I am healthy and strong
2. I have MS, it doesn't have me - I'm in control
3. I am beautiful (yes, I have to tell myself this. you should try it.)
4. I deserve happiness

'Big' to dos
1. Join the Alliance de Francaise and finish the full language course
2. Run the Bridge to Brisbane
3. Go to the north pole on that giant ice-breaking ship and see polar bears and other cool stuff (I'm shit-scared of the ocean and boats so this is a scary one!)
4. Ski in the snow

There is more...but I won't bore you with the detail. Or, more like, I won't tell you because you'll think I'm totally coo-coo-cachoo. They're all legal though... So much to do, so little time.

Thursday, 2 June 2011

Breaking Bad(ness)

Ok. My first blog was pretty full-on, wasn't it? It's hard to be up-beat about my MS diagnosis, but it's not all bad.  I guess. It's hard, but not impossible. There have certainly been good things to come out of my experiences with MS. I guess you could say 'by-products" of MS. I don't take things for granted anymore. Ok, I still take refrigerated goods for granted, but the big stuff? No way. My family, my partner, my friends, my ability to make a living, my ability to see and walk. These are but a few things I give thanks for every single day. I'm not religious in any sense but I know now more than ever that I am lucky to have what I have and know what I know. That's not to say I didn't appreciate what I had before my diagnosis. But with the gift of perspective now I know that I shouldn't delay that phone call to my mum, or skip lunch with a friend to finish this work report that can wait. And I no longer slave after hours at work when I am feeling too tired to go on - my health is more important than that. If I want to sleep in, I sleep in!

It seems silly to me that this is stuff we should already know, yet for the last couple of years this is what I did routinely. I was avoiding personal issues by burying myself in work and thought that promotion and recognition at work was all I needed to feel fulfilled. What a joke! In the 12 months leading up to my diagnosis my health went really downhill. I caught every bug in the air, was exhausted all the time, I stopped running regularly and packed on the weight. And the one thing that made me feel worthwhile (work) became so unappealing to me that most days I struggled to get out of bed (it didn't help that my boss at the time was a complete nutter!). I felt I had nothing to give anyone. I got weird infections and had to have emergency surgery to remove a painful abcess. Things were just utterly shit. My wonderful network of friends and family, my beautiful man and even my precious little dog couldn't help me out of this funk. Then to cap off an already rough year, the floods and MS came along. Woahhh! My head was exploding. WTF?!

The interesting thing I learned about myself after all of this is that I am remarkably resilient. I doubt that I would be in this frame of mind without the incredible support afforded to me, but I do know my threshold for badness is much higher than I thought possible. I always thought I was a bit of a soft-touch, or a wuss. I am actually a tough, strong and smart (if not slow to learn!) woman.

When the doctor told me to 'live my life' and 'enjoy every moment and stop to smell the roses' I could have head-butted him for being so cliched and condescending. I thought 'How the hell would you know?! Don't say stuff like that because it's bullshit.' I didn't want to hear it because it was scary and I knew it was true. It's hard to hear it from people you (rightly or wrongly) assume have a perfect life. But, as cliched as it sounds, I think it should be everyone's credo.

For me, life is now a double-edged blade. While there is beauty and wonder, there is badness and ugliness. But I have realised that without the badness and ugliness you have no idea just how much beauty and wonder there is on your life. If I sound like some crazy zen hippy then too bad. Because for me it is true. While I wish like hell I didn't have MS, I am grateful for the lessons it has taught me. I am, in fact, one lucky lady.