Tuesday, January 29, 2013

Six Month Tysabri Results - Part One.

Hi there, long time no see.  Sorry it's been a long break.  No excuses, I am just slack!

Three  weeks ago I had an MRI because I have had six infusions of Tysabri.  Six infusions already - crazy town!!  Time goes so fast.  I have no problems with MRIs.  I’ve lost count of how many MRIs I’ve had – all I know is I have a pile of films that I have no idea what to do with.  Maybe one day I can have my own MRI brain and spinal cord art exhibition!  My kids could illustrate them.  Hmmm maybe I’ll wait until they are older, so they will know what they are actually drawing on and will have developed more of a sense of humour.  Anyways, I’m not sure if I am allowed to ditch them, I’ll have to ask my neuro in six months, but until then they’ll continue to keep the dust bunnies company under my bed.

As I mentioned I’m not concerned about MRIs.  In fact I informed the tech that I was going to get a half hour nap in while the MRI machine was doing its thing… He had the last laugh informing me the scan would take fifteen minutes with a break to inject the gadolinium contrast.  I would have to be good to get that short a nap in, which I am not.  So instead I relaxed and pondered what my results might hold. 

Six months earlier, when prescribing me Tysabri, my neurologist was adamant there would be no new disease activity; no new lesions, no new symptoms and definitely NO going downhill.  My previous MRI (when I was still the drug formerly known as “Mr C” or for those new readers, Copaxone) had shown new inflammation and activity – 5 new lesions, the most I had ever had in a six month period.  This indicated that even though I was injecting my wonderful (not!) meds daily,  my MS was active and more so than ever.   So even though Tysabri was touted as a wonder drug for halting MS in its tracks, I couldn’t get my hopes up.  What if it just didn’t work for me? 

In the meantime, I had another infusion of Tysabri.  I have to tell you there are absolutely worse things than sitting about for three hours watching a movie, texting friends or reading a book. 

Although at my last infusion I did meet an amazing woman.  Her name is Abby and she was infusing  in the bed next to mine.  She has stomach cancer.  Her medication options have come to an end as nothing was working anymore and she told me about all the alternative options she had tried.  I felt incredibly sad and helpless for her; her children are the same age as mine and she had been given just three short weeks.  My kids were with me too, for some of the time, being all boisterous and cute (or annoying depending on who you are), so I felt pretty uncomfortable.  I didn’t know what to say.  She was having a bad day – a bit teary and down.  Hell, if I was given three weeks I would be crying all day, every day.  She asked me how I was coping coming into hospital once a month, asked about how inconvenient it was, whether my medication was painful and how it was knowing that I may not have a normal life span.  This brave and incredible woman has three weeks to live and she is asking me these questions… It was humbling, humbling, humbling.  I asked her the same questions, after deciding it was more respectful to ask her outright what I wanted to know about her condition.

I told her that my greatest fear is my children developing MS.

At the end of my infusion all I could do was hug Abby.  I couldn’t make her cancer disappear, not even a little bit.  I told her would see her in four weeks’ time.   She didn’t look like she was just three weeks away from dying, so in my mind it is really hard to believe she won’t be there in four weeks.  She was hopeful, saying she’d outlived one time limit already.  I am so dismayed about her situation and how ungrateful I have been with my own life that words can’t describe how much I want her to be at the centre in four weeks. 

A week later I went into my local SKG to ask for my MRI report.  Although my family were in the car I tucked the envelope into my bag and tried to forget about how heavy it was on my shoulder.  What if the Tysabri wasn’t working, what if I had to change my medication again, what if… so many what if’s.

At home I put the envelope on the bench and tried to ignore it.  But it eventually its calling wore me down.  I am a need to know person.   I don’t do well with doubt and not knowing where my health is concerned, especially when my uncertainty can be quelled with a report sitting on my bench.  So I sat down and opened the envelope.

Ha… and that’s it for now.   Got to pick up my little darling from day care.  Check back in a few days and I’ll tell you more about what happened!!