Thursday, 27 October 2011

And now for something completely different...

What a week! It turns out there was some confusion with my latest MRI report. My thalamus seems stable but the old lesion is still active. The new lesion is actually in my spinal column, which is...interesting. I am yet to have the results explained to me, but the doctor's priority seems to be getting the drugs into me, so I shan't complain. On Monday this week the hospital called and said I was to be admitted on Wednesday for more chemo. Thank god my boss is super cool with last minute notice (she's a bloody gem actually), despite my hectic work schedule. I had to postpone a really important trip to North QLD for this treatment and she just shrugged, bless her cotton socks!  I was infused yesterday and today I am home resting and drinking endless cups of tea. I had a very bad feeling about this infusion for some reason and was compelled to tell everyone how much I love them constantly. MS is such an emotional and physical rollercoaster and I think my usual optimism has given way to reluctant skepticism. But enough whingeing! The infusion went really well and thanks to the generous dose of phenergan (pre-treatment) I was unconscious for most of it. My lovely mum sat by my side the whole day and it was a great comfort. Just in time for the needle to come out, my partner and his four cherubs came to pick me up. Having the kids around makes me play tough so it was really good to have them with us last night - and they all give great cuddles. Their nan came over for dinner and we had an early night. My heart pounded really hard in my chest all night but apart from that I felt surprisingly good.

I am a bit drained and weak today but I have some time off work to recover so I plan to use it to full advantage. Yoga, reading and sleeping is on the cards for today, and a visit from my fabulous sister (who will no doubt bring goodies and cheer). MS symptom-wise I am doing well. I can't ask for more really! More chemo in two weeks and then it should be check-mate for MS. Hazaar!

Did I mention that chemo makes you chemically 'hot' for a week? I can officially confirm that I AM HOT baby! Only downside is no smooches for seven whole days!

Thank you to all my friends and family for the huge love and support you have given me. I love yooooooos.

Thursday, 20 October 2011

Number 6

My neuro's registrar called me yesterday with some less than good news. I have a new lesion in my thalamus. I have been hesitant to post this today, since I am in a bit of shock, but this is part of the 'journey' (for want of a better word) I'm on. So I'm sharing the good, the bad and the ugly. I am unsure if I am feeling unwell today due to the MS, or if I am just shell-shocked. Maybe a bit of both. I feel like a puffy lump of lead. I feel like MS is trying to kill me, and I worry that it will win. I am worried about what is happening to my thalamus as I type this. It's a pretty critical part of one's brain and I really need it to work, damn it. I am terrified, in a word. I am considering writing a living will, just in case things get nasty again. We are hoping approval for the chemo comes through next week so we can get on top of it before any damage occurs. I fainted and vomited at a cafe near my office two days ago (was pretty embarrassing!). I brushed it off as low blood pressure or low sugar, but now I worry that it was my brain. Worry, worry, worry. I am looking for some positives but admit I am feeling defeated today.

If you are needing some inspiration today, all I can say is: be grateful for what you have now, because I am.

Saturday, 15 October 2011

But wait, there's more!

So much has happened since my last blog...where do I start? Welllll...

I have met with my local MS coordinator, MS nurse, MS psychologist and most recently the MS physio. I have learned so much more about MS, and I thought I had it pretty much covered. WRONG! I won't go into the boring details of my fearful reality checks but suffice to say I am now looking at my old, unwelcome visitor, MS with different eyes. It now seems more and more likely that I have had MS for much longer than these past 11 months. Looking back over the years I realise there were signs of something going on for more than 10 years. The MS nurse noted my history of illnesses and immune related issues, like asthma, endometriosis and stomach and bowel problems and gave me a knowing look that said "this is a classic story for many folks with MS." That, strangely, cheers me up and makes me feel less and less like I was hit by a steam train this year. He also gave us a lesson in MS treatments, particularly the different types of chemotherapies. I am one of a lucky few in Queensland, and possibly even Australia, that has access to these drugs because my Neuro is not very conservative. He doesn't label himself an MS specialist, but it seems that he is certainly viewed as one by his peers. And he's MINE! I will just have to tell him he is never allowed to retire or move interstate...

A couple of weeks ago I had a much deserved (and long awaited)  holiday with my lover to Koh Samui, Thailand. Those of you with MS might be thinking I'm mad for going to a notoriously hot and muggy destination, but we actually managed it spectacularly well. And besides, there is no way I will let MS get in the way of anything I want to do! We zoomed around the little island on a scooter together, shopped, ate amazing food and sampled strange local delicacies, slept, read, drank, swam and got all smoochy and romantic. It was fantastic. It was just for one week but it was the best week I have had in a long time. It got pretty hot some days but for the most part we had mild mornings and afternoons. When it got too hot for me when we were out of our air conditioned resort room I would just jump into the ocean fully clothed or in my swimsuit and jump back on the scooter. Other times in the shopping district in Chaweng I would tip a bottle of water over my head and feet and keep wandering. We cuddled tigers, leopards, monkeys and elephants and swam in beautiful waterfalls. It was a dream tropical holiday.

The following week back at work (eww), however, I started to get some crazy, new symptoms. I developed some pretty hardcore neuralgic pain in both of my legs.WTF! I tried to remain positive but it's hard to stay calm when you have seering pain that no drug like a good old nurofen or mersyndol can stop. It kept me up for two nights and I couldn't go to work. So it was off to the GP for a chat. She called my Neuro and they concurred that it was a relapse or flair-up and therefore time to visit the hospital clinic. So, naturally, I panicked. My lovely man was travelling for work when the flair up started and my beautiful mum came to my rescue and stayed with me until my Neuro appointment.  I had to take a big dose of valium to sleep and dragged myself to the PA hospital the next day. Through all of this though, I was thankful that I remained able-bodied and still had good vision. There HAS to be a positive when things are going sour, right? My Neuro was super cranky and sick with the flu so THAT was awesome (but I still love him!). After he made about 10 cranky phone calls and yelled at a few people he told me that I needed more Rituximab (chemo) and another MRI. I'm still waiting for the chemo dates but thankfully the pain has subsided and I just have a wonky/sore left leg occasionally now. I can totally deal with that. Walshie (formerly Micky, his nickname has evolved so stay with me here, folks!) theorised that my flair-up might just be due to getting too hot too often in Thailand, but he didn't want to take a risk.

Then today I had another MRI. I'm no radiologist but I reckon the pictures look pretty good so I am staying positive. I couldn't see 5 big lesions like last time and could only spot one obvious white spot. I don't get the results until my next trip to hospital, so I'm playing the waiting game again, but at least I don't have to stay in hospital and eat that heinous food! Hooray for small victories!

 The other big event for me this week was my first meeting of other folks with MS. I have been equally terrified and curious to meet someone else with MS ever since the diagnosis but I was worried they would all be sad and crippled lonely people. Of course when trying to raise funds, the MS Society of Australia will use the most disturbing images and stories and that can be hard to reconcile in your mind when you have the disease. But the comforting reality is that is only a small percentage of people with MS and most folks live pretty normal lives with the occasional interruption. So I rocked up to my first yoga class at the MS Society headquarters to find 8 other women there, ranging between my age (33) and about 60. And they could all walk and talk. Thank god. More than 50% of us had been diagnosed this year, and a couple of them had lived with MS for about 15 years. I was like a steel vice and could not talk for fear of bawling but after the yoga class we sat around and had a talk. Everyone wanted to share their stories and ask each other questions. One women admitted that she only came to see what we looked like, and if we could walk! So now the big mystery of 'others with MS' has been misspelled for me I can tick that off my list of things to do. Now I'm gearing myself up for chemo and MRI results. Please wish me luck!

Stay well  x